When you take your child to the emergency room in any part of the state, you know you’re there for a bunch or reasons: unavailable doctor hours, urgency, crisis, and most of all, acute evaluation to get you connected to admission. For parents, it feels pretty overwhelming the minute you step through the door. You are scared, devastated and shaken and it feels like you need everyone there to get you through it. If your child needs to be admitted to an inpatient bed, you also look to connect to the doctors, nurses and staff. Sometimes, you begin to trust and lean on them.
That is especially true for psychiatric emergencies. Here in Massachusetts we have mobile crisis and community supports to hopefully guide the process. There might be a family partner, a person with lived experience, who knows what this all means and can explain to you or support you as you walk through it. That person can listen, increase how comfortable and connected you are.
Emergency rooms and hospitals can be a pretty different experience, especially when you have a child with mental health needs. When your child is a young adult over the age of 18, it’s even harder and there is extra anxiety and fear. I remember sitting with my son who had requested that I stay with him as he was being seen. He had turned 18 and I wasn’t allowed in – unless he asked me. Fortunately for me, it was a time when he was not in a psychotic state and could invite me to support him. My fingers were crossed and I was thankful his level of paranoia and hallucinations was low so that we could remain a united front — a family of an adult child with an adult mom.
It was different and it was scary. Adults who had overdosed were there and some were detoxing. Adults with acute psychiatric symptoms were there and some were screaming or violent. Some people had been waiting for days for help. There were 2 or 3 who were locked in another room or tied down and medicated to be quiet. They were being managed, but not treated. Where do you go? What do you do?
I felt like I was reliving the noise, visions and memories that I’ve had when I have supported families across the state who need mental health treatment for their child. But here, it was so hard to make the connection with people so they’d understand that the reason that they were waiting 7 days, 10 days or even more in an emergency room for care wasn’t them. It is the lack of beds and the multiple other people waiting to get treatment too.
As a parent you wait, sleep and walk back and forth trying to count down the time that is passing. You are trying to remain the strong wall for your child. You are there. You crave conversation, you crave a break, you have to ask many times for a toothbrush, food, water and to use an outlet to charge your cell or use someone’s phone to call and check on the rest of your family. You wonder why they make waiting so tough on parents.
If you are in the emergency room for medical care, you are offered these things. When you are there for a psychiatric crisis, it’s different. Mental health has stigma, blame and judgement woven into the approach sometimes and it spills out on the young person and the parent. I smile when people talk about “complex children.” Myself, I call them the ”unique children” who need support and so much else.
Who are they, these unique children and their families? They are children and youth with autism, violent behavior, eating disorders, gender identity concerns, and sexualized behaviors. They are children who are sometimes hard to treat successfully. They are children who burn out their parents and often their siblings. They are the children that need support ASAP, not waiting in the hospitals until someone or something is asked or pushed or goes the extra mile to get that kid in.
When I first began to advocate for my child’s education program, I never thought I would have to learn the special education laws or strategies to use them. When I first brought my child to treatment, I didn’t realize I would need to learn to call the insurance company and even appeal. Most of all, I thought that if I could get medical care for my child with mental health needs it would be much easier to get care for his brain!
In Massachusetts and across the country, we are talking about integrating medical health care and mental health care to create a brave new health care world. This is exciting. It’s going to be quite an undertaking and will need the voices of youth and families to work and tackle the problems. It also is going to need all that stigma and judgment and blame to go away and have real empathy for what families go through and that the heart and brain are equal in care.
One way to start is that if your see a family waiting with their child or young adult in the middle of a psychiatric crisis, show that caring right now. Ask, “Do you need a toothbrush, a phone charger, some water or something to eat?” We have to start somewhere to make this happen. Let’s start first in treating all people like humans in the emergency room and teach the system that the brain deserves respect and understanding. The parents, youth and young adults do too!
Meri Viano is our guest blogger. She is the parent of two sons and a daughter who continue to inspire her blog posts.