Tag Archives: children’s mental health week

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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Remembering Yolanda

May 11th, 2012

For countless reasons, May has been and still is my favorite month of the year. It’s filled with dance recitals, school plays, field trips, field days, lilacs, graduations, May day walks and Maypoles. With longer, warmer days we also enjoy baseball games, ice cream trucks, bikes, pogo sticks, swingsets,  hopscotch and marching in or watching memorial day parades.  They are all great things that speak of May to me.

School is coming to an end and then there are the “firsts” of the year. First communions, first trips to the beach, first swim, picnic and cookout.  They all happen in May and remind me of new beginnings, happiness, pleasures and the hope that there is so much more to come.

My May memories are filled with commencements, summer jobs, weddings, vacations and my youngest daughter’s birthday on May 12. Often it would fall on the same day as Mother’s Day. This youngest of my three girls, from her first recognized day, celebrated in a very BIG way. There was her third birthday when everyone gave her the LARGE bag of Lays potato chips because it was the only thing she asked for, and made her the “happiest girl in the world.” Then there was the third grade birthday party where, despite the fact that we wrote out invitations for her entire class, she extended verbal invitations to the entire school (kindergarten to fifth grade) and many of these invitees showed up as well. I also remember her sweet sixteen pool party where all the boys brought her roses.  There were so many that the last boys to arrive gave them to me!  My May baby added to my list of all the reasons I love this month.

As the years went on, our family also celebrated Children’s Mental Health Month in many different ways. We did NAMI Walks together, attended legislative breakfasts, went on advocacy trips to the State House. 

My May baby, along with her two sisters, sometimes suffered from mental health demons.  However, she always had a special empathy for others with struggles like her own.  As I worked as a family supporter, even before her diagnosis, she would often ask me to speak to a schoolmate’s parent because, as she said, “They don’t know how to do it.”  The “it” usually meant to advocate at the school level.

This May we will celebrate our daughter’s 21st birthday.  It seems impossible but she will not be here to celebrate with us.  My baby, the child of so many talents and strengths, with physical and spiritual beauty and emotional challenges that sometimes tore at my heart (and other times frustrated me more than I imagined any child could) took her life four years ago.  It was just months before her 17th birthday.

I wanted to write this blog for several reasons.  The first and most primary is to honor Yolanda.  As her parents, we think about her, laugh at fond remembrances and painfully miss her every day.  I don’t think that will ever change.  But we have faced the unimaginable and learned much.  I know my daughter would want me to speak to others in her name.

In many ways, we have come so far in the past 20 years in children’s mental health.  Early diagnosis, treatment, appropriate interventions and a growing recognition by schools of mental health challenges have all improved.  Yet, not all children and families benefit from these improvements and many children are still “pushed through” from  grade to grade.  While some people are leading the charge in their part of the system, there are still children and families who do not get what they need and are not treated with understanding and respect. Through the CBHI initiative, the state has put in place pioneering efforts to try to rectify some of these problems.  In many cases, some things are improved and children and families are doing better.  But, despite all these efforts, other kids are “still stuck.”

We have come so far, yet there is still so much more to do!  I ask you today, for all of us and our children, to continue to challenge the barriers and work to take them down.  In whatever way you can, be aware of how much impact your voice and presence make.  A little righteous indignation can go a long way and can bring about improvement and change. It may well be the most exhausting work you will do or have ever done.  It is not often applauded.  We don’t get the big bucks, accolades or the recognition of a job well done.

We are fueled by passion and hope that tomorrow can be better for our own children and the others that follow.  With HOPE that they can attend school in an environment where they feel safe and happy.  With HOPE that they can have friends, enjoy play and be respected.  With HOPE that they can do the best they are able to do and get the help they need to do it.  And with HOPE that not one more child has a week, a day or a minute where they cannot imagine living another moment.

I HOPE for many merry, merry months of May for us all.

Mary Ann Tufts is our guest blogger.  She is a fierce advocate, a wonderful mother and a strong voice for children’s mental health.  The Children’s Mental Health Law was named after her daughter Yolanda.

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Why we need awareness week

May 1st, 2011

In the mid 1990s, I went to a conference held by the National Federation of Families for Children’s Mental  Health and heard for the first time about children’s mental health awareness week.  A group of parents from Missouri had come together and decided that the best thing they could do for their children was to work on stigma.  They thought that stigma was as large a barrier for parents whose children had mental health challenges as access or lack of effective treatments.  It probably still is.

One of the reasons I was so drawn to this new campaign called children’s mental health awareness week was that my son and I had had our own jarring experience with stigma.  When Matthew was 7, he had his first hospitalization.  It was preceded by months of being withdrawn, often unable to leave the house and ultimately an attempt at suicide.  When he came home, he went around the neighborhood to his friends’ houses and announced, “I was in the psychiatric hospital but now I’m better so I came home.”  Most parents responded, “That’s nice, Matthew.”

One mother, however, immediately called me.  She said she no longer wanted my son to play with her daughter (who had been one of his close friends) and further, she didn’t even want him to come onto her property.  I was stunned, hurt and bewildered.  I was sure this wouldn’t have happened if he had been hospitalized for almost anything else.

Current studies show that human brains prefer data that support what we already believe. A 2007 study by researchers from Indiana University, University of Virginia and Columbia University shows that Americans believe that children with depression are likely to be violent.  In the same study, 82% felt that doctors were overmedicating children and 56% felt medication prevented families from working out their problems.  An additional 45% believed that rejection at school is a likely consequence of getting treatment.

Parents are experts at determining risk-benefit ratios.  While we are all committed to standing up for our children and fighting stereotypes about children with mental health needs, we also know that stigma still packs a powerful wallop and can be deeply rooted in society’s beliefs.  One mother commented recently, “Sometimes the stigma can be worse than the illness.” As many as 79% of families whose children have mental health needs avoid seeking treatment for their children due to stigma.

That’s why we need children’s mental health awareness week.  We need to educate people about what works to displace what they “think” they know.  We need to call them on their ignorance and replace their beliefs with new ones.  We need to show support for children, youth and families who are seeking the care they need to counter public opinions on treatment.  Most of all, we need to say that stigma is socially unacceptable.  Stigma diminishes all of us — it lessens our possibilities, narrows how we view health and limits our future. 

In America, we fund treatment and research for people with illnesses who we see as most similar to ourselves.  Nearly everyone has a relative who is a cancer survivor and is willing to say so.  Many people have family members and friends whose children have mental health needs, but stay silent. Awareness week is a chance for all of us to speak up and speak out.

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10 Things Families Want Residential Providers to Know

June 20th, 2010

A little over a month ago, 5 fearless parents and I conducted a 3 hour workshop for residential providers from all over the country. Their national conference was held in Boston and we were the only workshop with an honest-to-goodness parent panel. Some of the other workshops included youth speaking about their experiences, but we were the lone parent voice. We used our time effectively, recounting experiences and giving advice.

Residential care for children with mental health needs is slowly changing. This is partially caused by changes in funding and certainly influenced by a new understanding that out of home care must be seamlessly connected to a child’s family and community. The Building Bridges Initiative recently held its 3rd summit in Omaha and continues to promote practice and policy to strengthen partnerships between families, youth, community and residential based treatment. There are some truly innovative and exciting programs being developed. It should go without saying that any new policy, practice or design needs to include input from parents.

With this in mind, our presentation also included a top ten list called, “Ten Things Parents Want Residential Providers to Know.” This list is a result of many heartfelt conversations, moments of humor and often exasperation shared by dozens of parents over the years.

Number 10. See me as part of the solution, not just part of the problem. Let me know what you’re finding is effective and what isn’t working – I’ve been through failures before and I know they are part of the process.

Number 9. I know things about my child’s history, strengths, responses and culture that no one else does. I’ve known my child since he/she was an infant and I know things no one else in the world knows. Sometimes I worry that some of the information in his file might be wrong.

Number 8. While you are making decisions based on my child’s needs, I am making decisions based on my family’s needs. With each decision I think about the impact on my entire family, especially the other children.

Number 7. When we have a difference of opinion about what to do for my child, remember I am an expert too.

Number 6. Don’t call me Mom (or Dad).

Number 5. I want to know that you see my child as a special and unique individual. As one parent told me, “Just for the length of this treatment meeting, I want my child to be just as important to everyone else as he is to me every day.”

Number 4. I am tired and frustrated by everything we have gone through to get to this point. There are days when I don’t feel successful at parenting this child. At our first meeting, I was probably at a low point.

Number 3. I really value good information. Getting useful information to help me understand my child’s diagnosis and how to access treatment for him has been very hard to come by.

Number 2. Regular, detailed communication is important to me. I want to hear about my child’s progress and help develop strategies to build on successes. I appreciate all forms of communication (phone, email, newsletters)

Number 1. Please train your staff on the principles of family-driven care. I am getting tired of training each new person myself!

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Go Green! It’s Children’s Mental Health Week

May 5th, 2010

This week is Children’s Mental Health Awareness Week and there are events all over Massachusetts. Some of them are splashy — such as dinners and photo exhibits — but most are low key events organized by parents and those who want to do something about the stigma still attached to mental health disorders. The governor and many mayors issue proclamations, posters and flyers are put up in communities and everyone is urged to wear a green ribbon. I’m wearing one right now; are you?

What I love most about children’s mental health week is that it still belongs to the families who started it. In November 1995, I went to the annual conference of the national Federation of Families and heard a presentation by a passionate, funny and articulate group of families from Missouri. They had come together and decided that the most important thing they could do for their kids was try and reduce stigma. “This isn’t a casserole illness,” one said. “No one comes to your house with lasagna or a casserole when your child goes into a psychiatric hospital. Instead, they either don’t know what to say, or worse, act as if this is somehow the parent’s fault.” So they started a campaign to raise awareness, reduce stigma and celebrate their children. It’s still going strong in Missouri to this day.

After the conference I brought all their materials and suggestions back to Massachusetts. In May 1996, two friends, Nancy Collier and Marian Butler, and I launched Children’s Mental Health Week in our state. We created posters, a tool kit and took a stab at writing public service announcements. Our coworkers and friends gave us small donations to help with printing, mailing and glueing ribbons together. We met each other in McDonald’s parking lots and handed off materials. We were determined it was going to be a success. Parents loved it and put up posters in libraries, supermarkets and schools. And proudly wore their ribbons.

We got technical advice from the family organization in Missouri along the way. (I’ll never forget the phone message from one staff person, after we had had a few days of telephone tag. He was trying to connect to get some information to me and kept saying, “I want to git with you so I’ll keep tryin’. I’m gonna git with you all in Massachusetts.”) They were so pleased to see families in other states mirror their efforts.

Next year will be the 15th year we have had Children’s Mental Health Week in Massachusetts. Children’s mental health issues are more often in the news (both positive and negative coverage) and our awareness has increased. Parents still emphasize the impact that a child’s mental health needs have on everyone in the family and sometimes it’s heard. We’ve made some progress but there’s still a lot of ground to cover.

Guess I’ll keep wearing that green ribbon!

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