It's been 11 months since my first experience with the psychiatric emergency room. Eleven exhausting months and a merry-go-round of hospitalizations. We are still managing a mental health crisis that seems like it will never end.
Although it would have been impossible for the hospital to have adequately prepared me for the year to come, if I could go back and write a letter that the hospital would have delivered to me (and countless other parents) at our first visit, this is what it would say:
We want you to know we will do our best to take care of your child that you love so much. We know that when your child is on our unit and not in your home, you feel both an indescribable emptiness and deep sense of relief. You can sleep because your child is safe. You can't sleep because of everything your child is going through. We will do our best to take care of the child that you love so much, but we need to be honest with you, now, right up front. It won't be enough.
In the beginning, you will scorn the mental health system feeling that parents can only get help for their children if their child attempts suicide and is not successful. Over the course of the year, you will talk to so many parents and you will realize even when a child is taken to the hospital because of an active, unsuccessful suicide attempt, help is still not guaranteed. These children can still be turned away. Then you will go on to experience it first hand.
At your first psychiatric admission, we know it almost certainly will not be your last admission. We know the system is broken. We know there is no way to access the help you need. We know you are and so many others are fated to repeat stays because of the breakdown in care and the lack of available resources. No one will say this out loud, and the system will try to trick you into believing it is your fault and the fault of your child. It's not. Don't be fooled.
Because inpatient is set up to be acute stabilization, your son will be discharged before you have secured the proper (any?) outpatient services. We are sorry. It's not our fault. We know the wait for an outpatient psychiatrist is months and months long, but we can't keep your son here.
When we discharge your son, we will give you a handy chart that outlines your safety plan. Green means go. You are good! Yellow means you should keep watch. Red means warning. You are in danger of needing to return to the hospital.
We will hand you this chart and you will shake your head and refuse to take it home. (Honestly, we are a bit surprised you didn't rip the chart up and hand it back in pieces given your disposition). "It's meaningless!" you will demand. We will listen and nod our heads, but it is all that we can do. You will continue, "Right now, on the day that you are discharging him, he is in the red zone!"
We will try to comfort you by telling you that you can bring him back to the emergency room if you are worried. We will assure you that the emergency room is open 24 hours a day and 7 days a week.
We will offer you this encouragement each time we see your son, and then we will try to turn you away from this service too. One of our doctors will candidly ask you if you could try to stop bringing him back in. Now, at the beginning of this journey, this may sound unbearable, but we are here to tell you that by the time this happens, you will be unshakable.
We won't mention to you how many nights you will end up sleeping on the emergency room floor because of all of the times to do have to bring him back. Honestly, at first admission we should encourage every parent to invest in a small inflatable air mattresses, but we won't mention it. It would require that we admit, upfront, how many kids cycle in and out of psychiatric services without getting the help they need.
This is going to be exponentially difficult because your son does not have the correct diagnosis. There will be many disagreements over the correct path forward, and there is an overall lack of availability of appointments with specialists so you cannot schedule the evaluations you need anyway.
Perhaps the biggest reason this will be a nightmare is because there aren't treatment plans or programs for kids like your son (and the sons and daughters of so many others). Your son will be pushed through mental health programs that don't meet his specific needs. He will be shamed for not doing more. He will be told if he really wanted to get better he would be different. But he has a neurodevelopmental disorder. He can't help the way he sees and interacts with the world.
Even if he did not have this disorder, mental health disorders are just as real. People do not choose to be sick with mental illness, but your son, and the sons and daughters of so many, will repeatedly be treated like it is their choice and their shortcomings.
You will almost never agree with the hospital's discharge plans, and we are truly sorry, but we cannot offer you services that do not exist. We have a feeling you will figure out how to cobble together a treatment plan that does meet your son's needs but it will be an overwhelming, all encompassing process. It will take everything.
Over time, only 3 of the 10 adolescent psychiatric hospitals in the state of Michigan will even consider placement for your son. But before that time, you will refuse beds that do not have the correct care providers on staff, and we will threaten to call CPS and report you. After all it is neglectful not to accept psychiatric care for your son!
What did you want us to do? There was already an ambulance on the way to transfer your son. It would have been so much easier for us if we could have just transferred him and moved both of you out of our waiting room. There were people that needed the chair you were sitting in.
The mental health system will fail you and let you down over and over again. As much as you will fight with the systems, you will also develop incredible allies in unexpected places. Your case manager at your insurance company will become one of your fiercest allies along with individuals at specific advocacy groups. They will help you get through this.
We want you to know that despite the heartbreak and despair you will go through over the next year, there is also a gift. When we see you, yet again, months from now, we will tell you that you are doing a great job. Even though we sometimes go head to head on discharge plans, we will tell you that you are doing an amazing job advocating for your son. In the months that follow, not only will you come to know that we believe in you, you will believe in yourself more than you ever imagined possible.
Although you will continue to be surrounded by love and support, you will also feel alone battling a system that cannot and will not understand. You and your husband alone will stay up and night keeping your son safe when the treatment providers that have promised to help are home asleep, unreachable by phone or text.
It doesn't mean that no one cares. We all care. But in the darkness of night, this is your son and your fight. None of us want this breakdown, but none of us are in a position to change it.
After everything you have been through though, there is a chance that you alone will rise and change the system. You may very well become the one you are waiting for.
We look forward to seeing all the ways your love, strength, and advocacy help your path, and the paths of so many others, unfold.