Do you remember the Tom Hank’s movie, The Terminal? It is based on a true story, about a man that was literally stuck at JFK airport because he was denied entry to the United States and at the same time is unable to return home because of a military coup. Most of us can’t even imagine being put in that situation, so much waiting, uncertainty, frustration, confusion, fear and occasionally, a little bit of hope. I experienced a different yet similar situation last December only it didn’t take place in an airport but instead inside of a children’s hospital.
When you hear the words children’s hospital, immediately you feel sympathy and compassion, those two words almost feel wrong, like they shouldn’t even be used together in the same sentence. You may visualize a little one that doesn’t feel well and has a spiked fever, a child diagnosed with cancer, a child getting their tonsils out or maybe they fell off a slide and are getting a cast for their broken leg. Any of these images evoke empathy and are understood as hard moments not only for the child but also for their loving and concerned parents.
So, what was wrong with my child? How did we find ourselves at a children’s hospital in Plano, Texas three days after Christmas? Our story began a couple of years earlier, and during those years involved hundreds of appointments with specialists, school administrators, therapists, psychiatrists, counselors, doctors, social workers, case managers, patient advocates and unfortunately with probation officers. For every appointment, there was at least one phone call to schedule it and sometimes to reschedule it when things weren’t going well. For every new appointment, it meant filling out mountains of paperwork and explaining and reexplaining how we got to whatever office we were currently in. In between all those appointments we had experienced multiple visits to the emergency room, several acute residential program placements, two outpatient programs, filed at least twenty missing person/runaway reports, two arrests, countless trips to the juvenile detention center and a partridge and a pear tree.
The events that brought us to the children’s hospital had almost become normalized to us. My daughter, who lives with Bi-Polar 1 disorder and Disruptive Mood Disorder threatened to hurt herself, this time she had taken a few pills. We promptly took her to the local ER, they examined her, talked to her, and per usual believed she needed to be observed for at least 24 if not 72 hours. We of course agreed, leading up to this we had been actively trying to get her into any program that would help her. Like every specialist we met with, we knew she needed more support and help then what we could give her or were qualified to give her at home and there weren’t enough therapists or days in inpatient or outpatient care in the world that would give her the tools that she needed. Every specialist, therapist, doctor, counselor, social worker, everyone agreed she needed more. But understanding that and finding a program that would meet her needs, that she qualified for and that had space were two totally different things.
This time the trip to the ER went a little differently though. When they ran the usual round of blood tests, one of her tests came back a little off. They said because she was only at the time 16, they thought a children’s hospital would be the best place to monitor her for self-harm attempt and continue to monitor her bloodwork. I followed the ambulance from the ER to the children’s hospital late that night (these kinds of visits never happen during normal daytime hours). We arrived, got checked in, and they left me with a pile of paperwork as they took her back to her room. Once I completed most of the paperwork, I waited in line to turn it in to the sweet, bubbly nurse behind the counter. I was in a waiting area at the hospital with a sea of other parents, all worried about their children, hoping it wasn’t the flu or RSV. As the nurse reviewed my paperwork, it quickly struck her why I was there with my child and she said in a very quiet sympathetic voice, “ Oh, you don’t need to wait out here, we can have you go back, don’t even worry about filling out the rest of this, we will figure it out once you guys are settled.” She was a breath of fresh air, she understood the weight of this paperwork felt like a ton of bricks, keeping in mind I had just filled out over twenty pages of paperwork at the ER a few hours earlier and had been asked all of the same questions. She grabbed another nurse and asked him to take us back to the room, he looked at me and then at my daughter’s paperwork and chart she had handed him and when our eyes met, it felt like he was saying “I am so sorry you’re here.” He escorted me back to the room she was in.
A normal room in the ER is nothing fancy but a room with a child that has threatened to hurt themselves is basically a blank canvas. They remove everything in the room that could be the least bit harmful, down to the clock hanging on the wall and the tiny nail that holds it there. We sat there for hours, watching movies and talking to nurses until finally a doctor came in and announced that they wanted to keep her to monitor her bloodwork and her safety so they would be moving us upstairs to a room as soon as it was ready. Soon there after we were whisked away to a room on the 5thfloor of the hospital. This floor had wreaths on almost every patient’s door and a beautiful giant Christmas Tree near a sitting area in the lobby- which would soon become my home base for the next 3 days.
As soon as we were checked into our room, my daughter became very irritable, yelling at me and the nurses. I could only apologize to them, and after answering what felt like a hundred more questions about her and her history and conditions, we all decided it would be best if I left the room for a bit to give her time to settle in. As I sat in the heavily decorated sitting area, an older man came up to me and asked if he could join me. He sat down and let me know he was a social worker for the hospital, he had more paperwork for me and asked me even more questions. He let me know that the goal was to get her into a short-term residential care setting as soon as the doctor released her. I agreed and let him know the places we had already been. He looked baffled, and said “why hasn’t anyone recommended long term residential treatment for her?” I quickly explained that everyone had, but anywhere we applied, we had been denied. Either they had no space, they had too many other children that were at her same “level” or they only had room for boys, not girls. I had learned by then that at most residential facilities they can only have so many children on each level, meaning how acute they were. During the past 2 years I had called, visited and emailed dozens of long-term treatment centers for mental health care. I had emailed, faxed (yes some of them only accepted faxes even though it was 2019) and called and called again to check her status on the waiting list only to be told each time they could or would not accept her, others would just ignore my calls knowing they couldn’t help us. We looked in state- which is almost none in Texas, out of state and even at a couple in Canada just for good measure. Up until two years ago I was a person that literally knew nothing about mental health care. Nothing. So, navigating all of this was beyond overwhelming. And just like the other social workers that had come before him, this man told me he would help me figure it out and that we had done everything we could have possibly done.
The next morning, her blood tests were all normal, her doctor came in, visited with us and discharged her. But here is where it got interesting, and where I began to feel like Tom Hank’s in Terminal. She was released from the children’s hospital, but the social worker had not been able to find her short-term residential care, so we were stuck. Can’t leave the hospital even though she is medically discharged because she is still not mentally well enough to go home. When he came in to visit with me about this, he handed me a list, one I had been given before that had a breakdown by city of the acute short-term residential centers that accepted teens. In case you are wondering, there are very few. He had written by each one the status- FULL, ONLY ACCEPTS CHILDREN UNDER 12, ONLY HAS SPACE FOR BOYS, and DENIED. The ones that said DENIED were places she had been before, or sister companies from those treatment centers. Because of her behavior at one, she had been black balled by all of them. There were several he had not reached, I offered to help him contact them, and that is how I spent the rest of my day. That evening, when no accommodations had been made, we branched out of the DFW area and started looking at places in the entire state of Texas. Texas is a giant state, one would think there would be a lot of places to call. The list was dramatically short, and we were coming up with the same answers- there was no room at the inn.
So, we stayed another night at the children’s hospital, and another night after that. Finally, late the next evening our social worker came in and said he had found a place in DFW that would take her, but we needed to leave immediately. Cue me following behind yet another ambulance, an hour drive to this facility that could best be described as sub-par but quite frankly, they all had left a lot to be desired. When we arrived, we were placed in the waiting room, given more paperwork and asked to hang tight. I looked around the room, a scene I had become all too familiar with, a room full of worried looking parents all wondering how they got where they are now- admitting their child to an acute facility for mental health. The facilities all, always looked the same, vanilla rooms, rounded corners, nothing you can pick up to throw. We were finally called back, at this point my daughter, partly from her condition and partly because no one wants to be sitting in a waiting room at midnight had grown incredibly irritable. Threatening to hit me, refusing to stay in the room they had moved us to while we waited to speak to a nurse and cursing at everyone that she encountered. After completing the paperwork, visiting with the nurse and a case manager, she was checked in and I was free to leave.
The drive home is always the worst. You are relieved she is somewhere safe but terrified that she won’t be treated well, or she will end up hurting herself or someone else. You question every move you have ever made as a parent from the food you feed her when she was a baby to the times you had to travel for work to not having enough boundaries, or maybe having too many. A pattern of thinking that I knew would lead to nowhere because at the end of the day, none of those things were the cause of this condition. My thoughts would then always lead to how to fix this very broken system, that we couldn’t be the only parents, the only family dealing with this. Who could I call, what Senators to visit, how to make it easer for other parents and how to educate people that this is an issue to begin with? Again, two years earlier, I had no clue how any of this worked, and now, I realize how it works, and how it works isn’t working.
This is one story about our experience with the mental healthcare system. I have too many stories to count and our experience has not yet ended, it never will but hopefully it will get better. For two years I have stayed very silent about our struggles, a few close family members and friends know but overall no one would have any idea what we have been through. In part because I didn’t want my family or my daughter to be judged. I didn’t want her, even though I am not using her name, to be known for the child with the mental health condition because she is so much more then that. In part, because I was waiting for a finale or conclusion so we could share this transformation of our journey from not knowing what was wrong to how we helped her get better. But I recently realized that I have an obligation to share our story. By not sharing, I am continuing this trend that other parents and families go through, isolationism (if you’ve invited me to a party that I didn’t attend, now you know why) guilt, and shame.
This is just the first step in my sharing this story with you, this is a tiny pin prick in a giant circle of our journey. My hope is that if you don’t have a child or loved one with a mental health condition that you will have empathy and maybe do a little research. My hope if you do have a child with the same struggles is that you know you are not alone.