What Happens When My Child/Teen Goes to the ER for Psychiatric Care? (Post 1 of 3)

I am part of a private Facebook group for parents of children and teens who have bipolar or other mood disorders. Many caregivers post a frantic cry for support when their child goes into psychiatric hospitalization. I've also received emails, texts, and private messages from friends and friends of friends asking what to expect or looking for reassurance. I've decided to create a series of three blog posts covering some of the most asked questions and offering information to help educate and dispel some of the mystery.
The three posts will cover what to expect when your child/teen is in the emergency room, what acute/short term hospitalization looks like, and our experience with long term/residential treatment. Please share these posts with anyone who can use them!

What To Expect When Your Child or Teen Winds Up in the Emergency Room For Psychiatric Care:

You've found yourself at the ER with your child seeking psychiatric intervention. There are many ways this can happen: Your child is out of control, or has what the system calls "suicidal ideation", or is self harming, seems delusional; the list is endless. They may arrive by ambulance, in a police car, or under police escort, or simply in your personal vehicle. We have been to the ER many times and have arrived in my car, in my car with police escort, and in an ambulance.

Here is what you need to know:

First- don't forget to breathe. I'm very serious. I know that it's scary, and unknown, and heartbreaking to find yourself in this position, but you have to dig deep and stay calm. Your child needs you more than ever and you will need to be able to rationally answer questions, give accurate history, and most likely, spend a lot of time with your child just waiting. Staying calm might be the most difficult thing you do during this experience, especially if you came to the ER due to any violence or destructive behavior directed at you or your family. Anger is the natural response to that, and yet, for the well being of all of you, you must find a way to momentarily compartmentalize those emotions and be a calm presence for your child.

Be prepared to wait. And then wait some more. This can be an incredibly frustrating part of the process. Many hospitals have specific rooms for mental health patients, and will only utilize those rooms unless it is a life or death situation. With the continually growing mental health crisis in our country, this often means that when you arrive, the rooms are already occupied- leaving you and your child in the waiting room- many times for hours on end. Our longest stay was 27 hours from start to finish- but part of that was waiting on a bed to open up in an acute psychiatric hospital (more on that in the next post).

When you arrive and check in, you will register, give proof of insurance if you have it, then you will wait for triage. After triage (where a nurse asks you why you've come and checks your child's vitals) you will probably be sent  back to the waiting room. Your child may be called again for a blood draw, and if so, once again, you most likely will be sent back to the waiting room. Once called into a room you may notice it's different than other rooms in the ER. It may even be in an area that is closed off from the other rooms. Many rooms used for mental health patients have been prepped- often stripped of any extra instruments or objects that you'd see in other rooms to protect patients from potentially hurting themselves or others.

You can expect to see a nurse, a social worker or mental health worker, hospital registrar, and doctor at a minimum. Each time, your child will be asked if they are having thoughts of harming themselves, and if so, if there is a plan. This is tedious. It feels traumatic to have to answer that over and over, or watch your child have to repeatedly answer those questions. Just remind yourself it's part of protocol. There may be police presence. At our local hospital, there is an officer who sits outside of the mental health rooms. This is again, preventative and for protection, but I'll admit, it can make the process feel further stigmatized and removed from 'normal'.
Your child will be under a strict one on one instruction- meaning, they won't be allowed to be left alone. You will have to stay with them the entire time, and they will have to ask to use the restroom. If your child doesn't want you with them (which happens, and you will have to find a way to stand up under the weight of that pain somehow knowing they aren't well in that moment) then they will have a nurse with them constantly. If they are overly agitated or anxious, your child may be offered something to help calm them.

Prepare yourself to know there won't be a diagnosis in the ER. There will be no 'problem solved' or magic bullet. It can feel anticlimactic after the chaos that sent you there. It can be exhausting in every way, and you will likely experience a myriad of emotions. If you know some of this ahead of time, it can help you adjust your expectations so you don't wind up feeling discouraged.

Generally the goal is to create a plan going forward in order to discharge your child. This may be for your child to return home with instructions to follow up with a psychiatrist. Or, it may be that the next step is acute hospitalization at a mental health facility. In the state of VA where I live, you are no longer allowed to self-admit. You must have a medical clearance first- meaning you and your child may know that he/she wants and needs hospitalization, but you must still go through the red tape of the ER visit to justify it. If hospitalization is the next step, you will be waiting again. Hospitals are packed full and many times you are stuck waiting for a bed to open up at a facility. Often those facilities aren't local to you. The younger your child, the fewer options there are, which can mean a longer wait and possibly a facility that is a longer distance from your home. In our state if you are stuck in the ER waiting for more than 24 hours for a bed to become available, they usually admit your child to the hospital while you wait- putting you in limbo until there is space.
While this is frustrating, and shines a spotlight on the scale of psychiatric care needs, it is normal. Discouraging, yes. But sadly, normal. Most of the time a trip to the ER is a marathon, not a sprint. Try to relax if you can. I've told my son jokes, showed him vines on my phone, watched him try to sleep, played music, and calmed him when his anxiety from the wait overtook him.

The good stuff: Remember your child is in a safe place during the visit. That may be the only consolation for you in the moment, but don't discount it. Breathe it in deeply. If this is your first trip to the ER for this level of care, you are now in a good position to continue to advocate for your child in other arenas; school, counseling, testing, possibly ABA therapy or OT (for children with Autism or sensory issues), the option of getting an advocate or case worker; you have now reached a level of need that makes it obvious how desperately you need a support team. Take advantage of this reality and ask as many questions about available resources as you need to before you are discharged.

Finally: I know you feel utterly alone. You may feel as though you've failed somehow. This is a normal reaction, but it's not true. Many of us have been through this with our children- you don't know only because we aren't posting pics of them in the hospital bed on Facebook and Instagram the way parents of physically ill children often do. We're hidden in plain sight- but trust me; you are not alone. Also, you have no obligation to share information with anyone. You don't owe anyone an explanation, and you don't have to try and defend your choice (or, forced action if others were involved). As hard as it may be, find a way to stay calm and set boundaries. Privacy and space is rightfully yours and you are permitted to take all the time you need to decide what (if anything) you desire to share with anyone other than those intimately involved. You are going to get through this- and you, sweet parent or caregiver- are an amazing and loving person who is doing an incredibly difficult and compassionate thing. Much love!

Labeled

Healing and growing take work- often painful, gritty, I'd-rather-run-away than face this stuff kind of work. But, as with most anything of value, it's always worth it.

A couple of weeks ago, Samuel and I returned to the doctor's office where he had done the ADOS assessment for autism. We were there for the results and to go over the full report from the clinician's observations of how he completed tasks, how we answered one bazillion questions about his development, behaviors, understanding, and communication, and his medical history.
She handed both of us copies of the full report which spanned four pages. We flipped through the papers and scanned the medical description of what has been plaguing him and our family for the better part of 13 years. Her conclusion was Autism Spectrum Disorder (high functioning), and Bipolar I.

The black ink that bore his diagnoses swam in front of my eyes as tears formed. I wasn't so much upset, as relieved. He's had both of these diagnoses before- however- never both at the same time. He was given the diagnosis of bipolar when he was just three years old. It was shocking to me then. It seemed too big of a struggle to lay on shoulders so small, yet, the behavior and moods we'd experienced fit well within the perimeters of the disorder. But, when he was given that label all those years ago, it wasn't enough to explain everything we were dealing with. I knew in my gut there was more to it, but his young age made it difficult to tease out what was going on.
At that age, he'd been hospitalized for the first time. When we were discharged, he left with BP as the main diagnosis, and we were thrust onto the path of psychiatric care. What followed was years of running into dead ends. Psychiatric care is overwhelmed by the demand and not enough providers; psychiatric care for children is even harder to find, and children under the age of 8 are often refused service by doctors. It's not considered 'good practice' to diagnose children with such a heavy label, and for the next 5 years, we were given a myriad of other diagnoses instead- all of which essentially were symptomatic of bipolar. Right when he turned 9, we saw an incredible doctor at UVA. She was highly sought after and we quickly understood why.

Her ability to draw out what she needed from her patients, compile information given to her, and her uncanny skill in understanding family and behavioral dynamics, allows her to dig through unnecessary detail and identify the underlying issues. She diagnosed him with autism. I was relieved. I stopped taking him to the less than helpful psychiatrists. Instead, we stayed with Dr. Anderson (developmental pediatrician), traveling several hours one way for appointments regularly, and she helped us with med management, recommended therapies, and education about autism. I'm embarrassed to admit that because I was keenly aware of how autism was more 'glamorized' (for a lack of a better word) than the 'run of the mill' mental illness, it was easy to latch onto the autism diagnosis and forge ahead. Autism had risen into the collective awareness of our communities, and explaining to outsiders that questionable behavior stemmed from autistic struggles was more easily understood and accepted than sharing the painfully stigmatized information about mental illness. Dr. Anderson was incredible for us. She found a combination of medications that helped immensely- though our lives were anything but 'normal'. Still..... I knew there was more.

To get this combination of diagnoses; explanations of why and how his brain works the way it does, and education on what to expect, how to respond, and the types of support we need was ... a huge relief. The two together answer so many questions. They make life hard. For him, and for the rest of us. The two disorders buck up against one another and can exacerbate many of the symptoms he wrestles with. It's a sobering diagnosis- one that will require him to be diligent for life in taking his medications, eating well, resting and sleeping enough, exercising, and intentional social interaction balanced by intentional solitude. It's a lot for anyone- and certainly for a kid who is weeks away from his 16th birthday- and yet, there is relief. Comfort. Words given to years of hardship and confusing moods and responses. A real, tangible explanation as to why this has been so hard and so traumatic for all of us. Validation that he's not a bad kid, I'm not a failing mother, and our effort to push back the weight of this hardship has been nothing short of heroic.
He's one of the strongest people I know. He's had to live through being my first child- and my early years' lack of understanding about the brain and mental health and illness. He's had to endure my anger, fear, grief and inadequacies as I suffocated under the weight of scathing judgment heaped into my lap by doctors when he was young, and some extended family (who are no longer involved in our lives).

We've grown so much together. I have learned to trust my intuition. I never stopped seeking, begging for help, researching, trying everything I possibly could with the knowledge I had- but I also took on the burden of judgment from others who had no idea what life looked like for us. I allowed ugly words spoken in ignorance take root in my heart and spirit and regrettably, I mothered all of my children from that place of wounding for too many years.

We are survivors. He's done incredible work in the program he's been with for the past 4 months. He's talked, journaled, asked questions, read, participated in specialized therapies, gotten upset, angry, sad; he's engaged in vulnerable conversations with me that are hard to digest, yet powerful in their sharing. He's not a statistic. He's not crazy, or broken, or out of reach. He's a mighty powerhouse of talent, intelligence, ability, compassion, and maturity that comes with walking through the darker places of life.
I'm so proud of my son. We are the faces of people living with special needs and mental illness. We are warriors fighting a broken system, a challenging chronic health problem, and navigating a world that sees mental illnesses as excuses, or humanly inferior, or frightening. Neither of us would have chosen this for him. But it was chosen for us. And both of us are passionate about sharing our experience with the world- to offer hope, understanding, education, and connection.
I'm grateful for his tenacity. And I'm honored by his willingness to pull back places he struggles and share those vulnerabilities with me and others. He's something else- that kid of mine. And I have no doubt that he's going to change the world.