“Unfortunately, the money is in substance abuse, not mental health for children. If your child needs a drug rehab I can find hundreds.”
That’s what my major insurance carrier told me empathetically today as I called for information. After telling my situation emotionally for the umpteenth time, I felt a bit of hope when the behavioral health representative said, “If a facility is in-network, it’s covered 100%.” My hope was short-lived, however, as I waited for her glitchy system to sort through facilities.
As she searched for children’s mental health residential facilities, I held my breath. After hours of research, I had a list. A list of reputable places. A checklist of what they offered. A pros and cons list to help determine the best of the best.
But then she searched. “Let me look for children’s facilities in New Jersey. (Pause). Oh wow! There aren’t any. Okay, I’ll expand the search to 100 miles. Oh my gosh, there’s still nothing. It’s okay, let me go to the national database … I’m so sorry, but nothing turned up.”
That’s right. My major insurance carrier covers child psychiatric residential stays at 100%. But there is not one facility in the country that is in-network. You may want to read that again. Why do we have to wait until mental illness manifests into something worse before treating it?
My daughter, Grace, has always struggled. For as long as I can remember, she has had difficulty with emotional regulation, socialization, and communication skills. So I read books, articles, and blogs. I took her to every doctor I thought may help. We started with a developmental pediatrician, individual, and group counseling. Then we switched to a psychiatrist and have tried multiple combinations of meds. When she hit puberty and her condition worsened tenfold, I tried an endocrinologist and a specialist in pediatric menstruation. I’m still searching for answers.
Grace gets agitated. After about three or four hours in the same location, she gets restless. Restless isn’t the right word, but I’m not sure even Webster’s Dictionary has a word to describe what happens to her in this state of mind. She paces, she laughs, her affect changes. Eventually this leads to her feeling the need to escape her current situation.
In a school setting, you can imagine the safety concerns. The first time she was restrained is a trauma that is burned into my memory. I’m not sure what exactly died inside of me that day, but I experienced the purest form of grief. I keeled over in pain, I screamed from the pit of my stomach, and I wept for hours.
Unfortunately, she began to experience this intense agitation on a daily basis. Her coping mechanism has become seeking out restraint as the only way to get her body under control. So in the community, she sought out police who knew her story well after repeated incidents. In her new therapeutic school, she pushed the boundaries of safety for the same purpose.
I am not dealing with a typical preteen who needs discipline. I am dealing with a child with a severe mental illness who needs more treatment than I can give her at this time to stay safe.
Recently, for example, she began punching a concrete wall repeatedly. Later that night I rushed her to the doctor to learn she had broken her hand. A few weeks later, the cast came off. On her first day back in school, she used the same hand to again start punching the wall until she needed to be restrained for her own safety.
During a particularly difficult two month period earlier this year, she was hospitalized three times a week by ambulance. The scene played out like clockwork each time. When we arrived at the hospital her legs and arms were bound by hard restraints (she had broken out of the soft ones). Still it took several bodyguards to transfer her to a bed.
Immediately the doctors would give her the standard sedative of three different drugs, shots in the leg. My 12-year-old daughter wouldn’t even flinch. Her nervous system was so heightened, they then had to give her a dose of ketamine. Still she would show no signs of calming down. She kicked and fought and yelled. Next they would give her poor little body three times the original dose of ketamine. This would finally stop her from resisting and she would fall asleep loopy. I would stay up those nights watching her chest rise up and down, up and down, up and down, knowing these sedatives can interfere with breathing.
I have countless stories about living through one crisis after another unimaginable crisis. Countless stories where her mental illness affected not just Grace, but her fraternal twin sister and brother who show no signs of mental illness. Finally with the guidance and urging of many many professionals, I have made the most difficult decision of my life. My daughter will be going to a residential facility to get the help she needs. I spent the last year telling myself I could deal with this at home, I should be able to handle this at home. But I’ve come to understand it’s not about “handling it.” It’s about what’s best for her. One therapist asked, “If your daughter had cancer would you feel badly getting her treatment? This is just as real.”
I am working with the state and a county case manager, but it’s been an extremely long process with many hurdles. That’s why I originally reached out to my insurance to see if they could help. After all, I work hard for good benefits. I guess that’s not enough. If a child and family are in crisis, why would they have to wait months and jump through hoops for help?
Now that I’ve come to terms with going through the state system, it turns out there are even bigger obstacles to face at this point. She has been approved by the state for an intensive level of care facility, but the waiting list is nine months. There are private facilities, but their fees are massive. I am taking it day by day, and fighting through it.
I am a teacher with two masters degrees in education, and I have spent the last several years fighting. Fighting against doors that won’t open. Fighting for hope that seems to move a little further away every time I get near it. I fight with my relentless phone calls, my unending questions at meetings, my constant research, my insistence on speaking to the supervisor, and my swallowed tears behind a brave face. Most of the time I’m fighting a losing battle. And my career is working within the system of caring for children. If it is this hard for me to get my daughter help in crisis, how do people who don’t know the ins and outs manage?
For the majority of parents, it must be hard to understand the decision to place my daughter in a residential facility for months. Six months ago I would not have understood this choice for anyone. But I’ve come to accept (most of the time), that I am not dealing with bad parenting here. I am not dealing with a typical preteen who needs discipline. I am dealing with a child with a severe mental illness who needs more treatment than I can give her at this time to stay safe … to get to the root of the problem and finally find the right combination of medication and therapy for her.
Because I have scoured resources and the internet for guidance, for a road map, for someone with a similar story and found very little. Because I have reached out to countless organizations for guidance and found very little. Because as the details of my story leaked out in my personal life, I was shocked at the number of people who came to me privately to share they have been through similar struggles. Because I believe it will be an important (although terrifying) step in getting past my own shame and guilt. Because of all this, I have decided to start telling our story, with my children’s blessing.
During a particularly difficult two month period earlier this year, she was hospitalized three times a week by ambulance.
I tell our story so that when those who come after me are scouring the internet with their own questions, hopefully they will find my story and know they’re not the only one. So that those who don’t deal with mental illness will understand the personal meaning of the statement: “Our country is in a mental health crisis.”
I have no professional expertise, and definitely don’t hold the answers. But because I will continue to search for those answers and fight for my child, I believe our story’s ending will be a happy one. I believe we will be able to look back on these posts one day as a reminder of how far we’ve come and how much we’ve overcome.
Until then, feel free to join me as I expose what has felt shameful and secretive for too long. I am a parent of a child with a debilitating mental illness, but as of right now, the help she needs is nowhere to be found.