Getting my child help: An anonymous first-hand account of navigating the mental health system
This story is a first-hand account of navigating the mental health system and does not represent the thoughts or opinions of the Great Lakes Bay Region Mental Health Partnership, or any of it's partners.
They would tell me it was normal. “Welcome to the teenage years,” they would chuckle and say things like, “It’s only going to get harder from here,” or “Oh I know, I had two of them myself.” But it wasn’t ‘normal’ and I knew that. I began to stop trying to get people to understand what we were going through because they would literally brush it off and continue the conversation in another direction.
Her therapist had told us months before that we may get to the point where the medications she recommended to the pediatrician and therapy may not be enough to help our daughter. “There may be a time that she will need to be admitted to an inpatient facility for help,” she told us. I heard the phrase. But I didn’t fully understand what that meant, and I certainly didn’t think it would happen to us.
I am her mom, I will get her through this, all she needs is a little more attention at home and some extra love and patience and everything will be okay – those were words I would actually say to myself in the beginning of our journey.
My daughter stood in the kitchen with one of our kitchen knives to her wrist screaming that she hated me and that she would rather die than to have to live in our house another day. She yelled the most hurtful and vile things that anyone had ever dared to say to my face. I looked into her beautiful blue eyes that used to sparkle with joy when she would see me come through the door. The same little girl who would ask for “just five more minutes of snuggles mama” just a year before. She was there somewhere, but I did not know this girl standing in front of me anymore. She hated me. She hated our home and she was willing to kill herself just to escape.
I was so focused on her that it took me a minute to realize that in the other room stood my two other children, just 5 and 3 years old. The look of terror and confusion on their little faces is permanently scarred in my brain as they stood hiding behind the corner of the wall. My husband saw it, too and tried to calm them down and provide some sense of safety and security.
I knew this wasn’t normal. I knew this was not just the teenage years rearing its ugly head in my kitchen. I knew we needed help. Despite my best efforts, I was not able to calm her down. Every word I said was escalating the situation and was used as a weapon against me in a war of words that I was losing. I looked at my husband and we both knew. It was time. The worst-case scenario was here and we had to face the fact that we needed help. I gave my husband a head nod and he tucked the little ones in a corner of the couch and came to the kitchen. I turned and left the room. My hands were shaking as I called 911 and explained the situation. I wasn’t sure what the next step was. This is as far as the therapist had explained. She said to call 911 and get her admitted to inpatient, which sounded like a fairly simple thing to do.
By the time the ambulance came, the knife was out of her hand and she had calmed down a little. Her eyes still spit daggers at me from across the room and they landed right in my heart. I could feel the sharp pain with every look. My mom came to get the younger kids and my husband and I drove to the hospital and arrived shortly after the ambulance. The emergency room was packed. Covid was still running rampant and every room there was full. We had to wait in the hallway with the paramedics and our daughter strapped to a gurney. About 30 minutes later they had a room for us. It was off the main emergency area and in a spot that I didn’t even know existed until then. My daughter hid under the blankets and acted like she was sleeping, but I could see movement, so I knew she was awake. She has a history of self-harming and even though I knew there wasn’t anything in her possession when we came into the hospital, she was quite clever when she wanted to harm. I calmly tried to let her nursing staff know what I assumed was happening. When they checked, they saw that she was using her fingernails to scratch her arms and legs until they bled. They told us if she continued to do it, they would have to strap her arms and legs down. When she heard them tell me this, her anger level rose again, but she wasn’t angry at them, she was angry with me and she let the entire emergency room know. She was screaming at me saying things like “You’re the worst mom in the entire world. You act like you love your kids, but really you just care about yourself. I hate you and wish you would die so I don’t have to live with you anymore.”
Not only was I hurt, but I was embarrassed. You see, when you are on suicide watch, the door must remain open and there has to be a hospital worker on watch the entire time, right outside your door. That means every word is echoed into the halls for everyone to hear. I tried to maintain my composure, but when it became too much I quietly left the room telling her, “I love you and I am sorry.”
I didn’t make it very far outside the door before I began to sob. She was still shouting all the hurtful words and now I was in the hallway for everyone to see. I was the terrible mom and I was on display for everyone, and yes, they were looking at me. I remember sliding down the wall, trying to make myself as small as possible so that I wasn’t on display. Her nurse saw this and came around the corner to me, put her hands on my shoulder and told me, “I know you are a good mom and you are doing the right thing by having her here.”
Her words lifted a weight off me that I couldn’t even explain. It was the first time since we left the house that I felt seen and not judged and that someone actually understood what was happening. We waited in that emergency room for 28 hours until we could find an inpatient hospital with an opening for her. That was my first big wake-up call. The point where I knew that my love and attention would not be enough to help her. I could love her through it all, but my love alone wouldn't be able to get her through it.
When she was discharged from her inpatient stay 10 days later, she was on so many medications that she was not herself. She wasn’t angry and didn’t seem sad anymore, she just seemed numb. She was like a zombie, very complacent, but just going through the motions of life. The counselor during discharge told us that we would need to find a psychiatrist within the next week to help her manage her medications. She gave me a list of pediatric psychiatrists in the area and the list was short. I began calling them the next morning, but I was met with, “We aren’t accepting new patients right now,” and “We don’t accept your insurance.” It was a slap in the face. What am I supposed to do now?! Literally no one was helping me or giving me directions. I was at a loss, so I called back to the hospital that she was at the day before and explained the situation. “You will have to use the first doctor on the list,” I was told. But they wouldn’t take us because of our insurance and I tried to explain that but was brushed off and told to try again. How was I supposed to help my daughter when I was lost myself? I felt like I was standing in a crowded room screaming for help at the top of my lungs and all anyone around me would do is hand me a pamphlet on depression. I felt defeated, alone, and terrified. My daughter is going to kill herself and I can’t do anything to help her. I broke down and cried, and cried some more. Then I brushed myself off and called back. It was a publicly-funded mental health system. I explained the situation the best I could and this time I think they heard the desperation in my voice saying, “We’ll see what we can do and call you back.”
I was heartbroken when they called back. They said the psychiatrist would agree to take us but ONLY if we used their therapists. I was silent for a minute trying to process this. I had spent weeks going through the same process trying to find her a therapist that worked with adolescents. She was only 11 at the time and trying to find a therapist who was taking new patients and accepted our insurance was impossible. I was on waiting lists and calling offices daily trying to see if they had any openings to get her in.
Finally, I found a wonderful therapist who really connected with my daughter and who she was finally starting to open up to and trust. Now I had to give up that bond they shared so that I could have a psychiatrist write her prescriptions who doesn’t even know her? I had no other choice. I had to agree. My daughter was running out of medication and would be going through withdrawals if I didn’t get her more. They were meds that her pediatrician was not comfortable prescribing, so I had to get into a psychiatrist office and it had to be now. I reluctantly agreed. We were put on a waiting list for a therapist. It took a couple of weeks and we were not allowed to see her prior therapist during this time, because of insurance rules that I still do not understand and that frankly still irritate me to this day.
How can you take a child who you know is suicidal and not give her therapy for weeks after she just spent 10 days in a mental health hospital? Let alone leave her family to take care of her with no instructions, just another pamphlet. It makes zero sense, but that is our mental health system for you.
Finding a therapist
We have had to change therapists three times since switching to the publicly-funded system. Not because of anything that we have done, but because of therapist turnover. Expecting an adolescent to open up over and over and over to a complete stranger baffles me. How is she ever supposed to feel better when she can’t even speak her truth honestly to someone? The system is broken and as a parent, that makes me feel even more helpless.
For the better part of a year, we kept this all a secret. Not many people knew what was happening with our family because no one understood. If they didn’t understand before when we tried to explain her outbursts, they definitely wouldn’t understand now. Even my own father couldn’t comprehend why we would send her to a ‘loony bin’ and why we couldn’t just control her at home. She seemed fine at his house, happy even. Maybe we were the problem? Maybe it was our parenting that led her to this? When your own family judges you about the way you raise your children, it is terrible.
As a parent, I really started to doubt myself. Maybe it was me? If not my parenting, then maybe it was a gene that I had passed down? I suffer from anxiety and depression. Was it me? The circle of self-doubt was like a tornado swirling around me. Are my other kids going to grow up with this mental illness too? Even if they don’t, did I mess them up by not giving them enough attention while I was trying to keep my daughter alive? Do they feel neglected and will they need therapy because of this? I am such a terrible mom. I deserve all this sadness and guilt.
But I didn’t. Like many times before, I picked myself up and dusted myself off, because I am a mom, and that is what we do. I had advocated for help for so long with her, that I forgot to advocate for myself. I called my doctor and she prescribed medication to help me sleep and increased my anxiety and depression meds.
Within a few weeks, I felt like I could carry on and continue the fight. My husband and I were told by all of her other therapists that we were good parents, great parents even. We were told that we didn’t really fit the criteria for the parenting classes that they offered, because we already implemented all of the skills that they teach parents. You would think this would feel like a relief, but it didn’t. I wish we were the problem. I wish there was a class that we could have taken to fix ourselves and in turn, fix our child. The work needs to be done by them. As a parent, that is a hard pill to swallow. You can try your best to help them, but if they don’t want to do the work themselves, nothing will change.
We learned this with her second inpatient hospital stay, because even with psychiatrists, therapists and us being "by the book" parents, it still did not fix a damn thing. She was still acting out in school, still causing issues at home, and still self-harming and waiting to kill herself.
This time, our 911 call was sent to two police officers who came to our house. She had been fighting us over every little thing for weeks and was threatening to kill herself again. The first officer was younger and clearly new to the job. He had his little notepad of paper and his voice was shaky as he recited basic questions that he had clearly memorized. Once we explained the situation to him, he looked at us and his response was, “So, what do you expect me to do here?” The look he gave us was that this was not his job and that we were clearly bad parents with a bad kid and that we should control the situation. I wanted to scream at him, but I was in shock. He is supposed to help us, but instead his every move and every word made me feel like an idiot, an unfit parent. Thankfully the more experienced officer took control of the situation. He explained what was going to happen to my daughter and as he took my daughter to the police car for transport, he looked at me and said, “You are doing the right thing.”
Not taking no for an answer
Forty-six hours. That is how long it took for her to be admitted for the second time. I sat and slept in the most uncomfortable chair for 46 hours waiting to get help for my child. The same insults were yelled and I relived the same situation as before. This time, I was able to maintain my composure, reminding myself that I was a good parent and that this is what she needed at the time. Once she had calmed down, the person who is in charge of finding inpatient hospitals with openings came into the room. It had been over 24 hours at this point and I was exhausted – mentally and physically. She told us, “There are still no openings and she seems to have calmed down. You should go home with a safety plan. It seems to be behavioral.”
I looked at her in disbelief and told her that I would wait right here until a bed opened up for my daughter. She walked away and twelve hours later, she came back.
“I really think it is behavioral and she should go home with a safety plan and have a meeting with her therapist. The beds at the hospitals are for kids who actually need them.” These are words that were said to me from someone who was there to help us, someone who was supposed to be giving us resources and instead, she made it seem like we were overreacting to the situation and that we had no idea what we were talking about. I was LIVID. She knew nothing about the prior year and a half of what we had gone through, she had no knowledge of my daughter’s mental health standing and she knew nothing about me or my determination to help my daughter.
“Don’t come back in here until you have a room for my daughter,” was my only reply.
Being an advocate for your child is so hard. Standing up to the people who are supposed to be helping you, but brush you off is hard. Nothing about being a parent of a child with a mental illness is easy. You know there is an illness present, but because you can’t see it on the outside, people act as if it isn’t real. If my child was in a wheelchair or needed insulin to survive, no one would bat an eye to help or offer empathy. But with a mental illness that is not visible, you feel alone, isolated, scared and at times, useless. But you are not alone. I promise you. I am here. I have been in your shoes or at least something similar. This journey is hard. The professionals who are there to help you do not understand, because they have not walked the path. They have learned about it, but their shoes have never hit the pavement the way yours have.
I know you have spent countless hours on the computer screen late at night trying to understand your child’s diagnosis or looking up alternative treatment plans. I know, because I have done that, too. I know that your heart breaks when you see your friends driving their kids to sports practice and you are driving yours to countless therapy sessions that will never be posted on Facebook with pretty photos to go along with them. I know you are struggling with the school and trying to get them to understand that mental health is more important to you than your child’s grades.
My daughter’s school had never had to do a 504 Plan geared towards someone with a mental illness along with ADHD but I fought, and I am still fighting to get the resources that she needs. I know you will face the same struggles and you are not alone. You may be the first to forge the path, but you and your child will not be the only ones to benefit. Keep going. Keep pushing for changes for the countless other families that will be helped by your courage and strength. There are people out there who understand. I found my group on Facebook. Not my normal group of friends and family, but a group of parents whose children have gone through similar situations. We don’t brag and celebrate our kiddos the way that other parents do. Instead of cheering for the kid who scored the winning touchdown at Friday night’s game, or the kid with an academic achievement, we celebrate the medication that is finally working on our kids’ depression. We celebrate the days, weeks and months without self-harm. Our kids’ achievements may not be typical, but I promise you after what they have gone through, they are so much bigger and it’s something to be proud of.