Tag Archives: emergency room

Asking “Do you need a toothbrush?” can be a small bridge to support

February 7th, 2017

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.

 

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Emergency rooms, security guards and silver linings

May 1st, 2016

silver liningAs Children’s Mental Health week begins, I find myself thinking about my journey into the mental health world.  Almost 17 years ago, my husband and I adopted triplet sons. They were 2 days old the first time we held them.  Their birth mother handed them to us on Mother’s Day.  Since that day, I have always proudly proclaimed, “You will never meet anyone who received a more incredible Mother’s Day present!”  I still believe this.  What I didn’t know then was what an adventure the coming years would be!

From birth, my sons have been high need.  They were 6 weeks premature and were delayed reaching their milestones.  They displayed signs of sensitivity and hyperactivity very early on and were all diagnosed with ADHD combined-type before the age of 3.  In preschool, we noticed that they were not typical learners.  They were all diagnosed with dyslexia prior to the start of first grade.  Since then, they have all been found to have dyscalculia, dysgraphia, delayed processing, short-term memory deficits and, two have Tourette Syndrome.  We began advocating for their educational needs very early on and continue to do so almost every day.

They were also followed by a behavioral pediatrician who prescribed various medications for their hyperactivity and focus.  These helped sometimes and other times, the medications just exacerbated their behavioral problems.  Children with learning disabilities often experience anxiety and depression and this was the case with 2 of my sons.   Tourette’s has also caused “rages.”  Throughout the years, I have sought help from mental health providers who, at best, were unable to help and, at worst, just stopped returning my calls, leaving me feeling frustrated and helpless.

Three years ago, as my sons were dealing with adolescence, things began to unravel and eventually “blew up.”  One of my sons went into a prolonged depression, refusing to go to school, rarely eating or talking.  I desperately tried to find some help for my son.  His behavioral pediatrician felt she couldn’t adequately support his rapidly escalating mental health needs any longer.  Finding  an outpatient psychiatrist became an insurmountable task.  Most providers did not accept our insurance and the few that did, did not have openings or had very long waiting lists.  My son continued to deteriorate and when I feared he might hurt himself, I ended up taking him to our local emergency room.  It was a nightmare—the first of many that we have endured since. I am an RN who has worked in hospitals providing direct patient care for 40 years so my sons’ ER visits are viewed through this lens.

My son was 14 years old at the time of this incident. He was depressed and withdrawn.  In the ER, he was required to remove his clothing, including a sweatshirt that he always wore for comfort. He was placed in a “psych room” which was stripped down to a stretcher and a TV which was covered with a mesh screen.  We had no way to turn it on.  There was a camera in the room which was monitored by the hospital security team.  His room was directly across from the bank of screens for the psych area.  Hospital security used this area to socialize with other employees, often being loud and making inappropriate comments.  We heard them making fun of other patients– one of whom was a very young child who had been removed from his home by DCF and they laughed as he painted himself with feces.  I witnessed security guards allowing a housekeeping employee to watch while they all talked about the patients.

When I told them we could hear them and asked them to lower their voices, I was told to return to the room.  When I was leaving the room to make a phone call, the head of security made an inappropriate joke to me about a patient, and, when I gave him a dirty look, he insulted me. When I couldn’t take it anymore, I sought out a nurse and asked her how to get in touch with the Patient Advocate.  Instead, she told the Head of Security I was going to complain.  He then proceeded to follow me around, making rude comments.  I did eventually meet with a nursing supervisor, who admitted that she had no control over security but promised to try to help.  We were moved out of that area but felt intimidated by the security guard who was now posted at my son’s door.

We spent three days in that ER room awaiting a placement for my son.  I still shudder when I recall that time.  Unfortunately, every time one of my sons has had a mental health crisis, he has been taken to that emergency room  and had similar experiences.  I always fear retribution by the security team. There have been many times that I have not called emergency services out of fear that they will call 911 and force my child to go to that ER. Usually it ends up being a very expensive ambulance ride followed by discharge shortly after.

Living in the Boston area, we are very lucky to have some excellent teaching hospitals.  On several occasions, I brought one of my sons to a well-known pediatric hospital but, honestly, our experience was not much better.  One time, after finding my son had destroyed his room and was in his closet and would not respond to me, I called his behavioral pediatrician.  She advised me to bring him to this pediatric hospital to be evaluated (after I refused to go to the local ER).  Instead of helping, I was asked over and over and over by multiple staff members why I asked my son, “Are you safe, are you going to hurt yourself?”  I kept saying that I was concerned for his safety, as was his doctor.  Their focus was entirely on me, not my son….I was confused and scared.  They kept asking me to leave the room and, even before I was out of hearing range, I could hear them asking him if I he was safe with me. At one point, the room had 4 staff and again, they asked me, “What would possess you to ask your son that?”  I responded, “The pediatrician told me to ask him, besides, I’m a nurse and we ask patients that question all the time.”   They all said, “Ahhhh, she’s a NURSE….”  Apparently, that was his diagnosis, “his mother is a nurse” since he was discharged shortly after.   I just wanted to get out of there since we were not going to get any help.  We have had other visits there that were similar.

Most recently, the second born triplet began experiencing a lot of issues as well.  He has also done the ambulance to the local ER scenario, followed by being put in the room across from the security screens…aka the staff’s comedy show.  Nothing has changed, nothing ever helps.  When I brought this son to an appointment at an adolescent clinic to deal with misuse of electronics, he became very agitated and was saying he was going to “hurt his brothers.”  The doctor warned him that he should not be making threats but he wouldn’t back down. (He was mad but he has never intentionally hurt anyone.) The doctor decided to section him and send him to the ER for further evaluation.  Instead of telling me this, they had me leave the exam room under another pretense. When I tried to leave the room I waited in, I was shocked and horrified to see my son being paraded out of the exam room with several security guards, several Boston police and EMTs and put on a stretcher then sent by ambulance to go across the street to the ER (cost= $850!!). His head was down and he looked totally humiliated and defeated as he was paraded in front of dozens of supposed professionals, all gathered around, pushing forward and craning their necks to see “the show.” None of them needed to be there nor should they have been.

In 40 years of nursing, I have never done such an unprofessional, demeaning thing to a patient and I work with adults–not immature, fragile adolescents in an adolescent clinic.  The ER staff was respectful.  I learned later that the doctor who my son was seeing had called ahead to explain the situation and that was why he had not been able to warn me.  Security, on the other hand was invasive– literally leaning into the room and joining in on conversations between my son and I.  Also, to his credit, the clinic doctor e-mailed to check in the next day and, after I told him what had happened with the clinic staff, he said he was planning a staff meeting to review the incident to try to prevent such behavior in the future.

I can’t possibly describe all the visits and interventions.  In general, I have found emergency rooms are NOT helpful but, when growing teens get out of control, I have no choice at times (with police comes the ambulance).  We have been lucky enough to have some very supportive in-home therapists but the turnover is frequent.  We have also had some positive interactions with emergency services though, as my boys have gotten bigger and more destructive, they usually will not come to our home.  I try to avoid calling them as on a couple of occasions they called in 911, forcing my son to go to the ER.

I wish I could say that things have stabilized but they haven’t.  As my sons race towards the age of 18, I worry what will happen when they are considered “adults.”  We are debating medical guardianship and other options.  I research and read and worry.

So, as Mother’s Day approaches, I think about the past 17 years and, yes, it has been a lot of work, and tears and worry but…..I have 3 sensitive, funny, loving wonderful boys who are growing into awesome young men.  I get through the bad times by looking for “silver linings” when things go wrong. This is my version of resilience.  The ill-fated visit to the adolescent clinic happened on a late afternoon. As we were driving into Boston, I was mumbling about the terrible traffic which was only going to be worse on the way home.  I was whining about all I had to do that evening and how long it would take to get home.  Driving home later that evening, after spending many hours in the emergency room, my son, who had been through quite an ordeal turned to me and said, “Hey Mom, I have a ‘silver lining’ for you.  We missed rush hour traffic!!”  I love my boys!

Our guest blogger has chosen to remain anonymous.  She is the mother of three teenage sons, loves music and hopes her story helps others.

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