Tag Archives: stigma

We don’t tell you and here’s why

December 19th, 2012

The best way to get help for your child with mental health issues is to talk about what’s going on.  But most of us don’t, especially not at first.  Adam Lanza’s mother, Nancy, was reportedly quiet about his problems.  She was happy to talk about gardening, the Red Sox and her hobbies.  But she was quiet (publicly at least) about her son.  I have been, too.  We learn to be.

Even among parents who have kids with mental health problems, many cringe at the idea of exposure.  Liza Long’s stunning post,” I Am Adam Lanza’s Mother”, has prompted many parents to worry that she has exposed her 13 year old son to public scrutiny and taken a terrible risk.  Other parents pour out their own stories, feeling the risk is nothing compared to the pain of dealing with mental illness all alone.  I have been both kinds of parents – the one who keeps quiet and the one who shares her child’s story.

When my son was in elementary school, he was sometimes violent, explosive and unpredictable.  His mind, his focus and his mood would shift and nothing could interrupt the explosion.  Believe me, I tried.  All I could do was send his younger brother to his “safe spot” and manage things the best I could. For reasons none of us understood, his brother was often the target.  I worried for years that I would get a call that the state had removed my younger son because his older brother broke his arm or hurt him grievously.  I went to all the best experts who speculated that maybe he was angry because his brother was “normal.”  Why then, did he attack me too? And why did he also harm himself?

No one was ever sure about the why of it and we learned to live with the mystery and uncertainty.   When he was a little older, my son was able to tell me that every day he woke up feeling emotional pain and most days it was simply horrible.  When he exploded or when he hurt himself, it was like bursting a balloon, he said.  The pain went away for a while.   As he grew older, he hurt himself more and others less.  He reasoned that it was morally a better thing to do.  As his mother, I was still anguished.

When this first began, I told other mothers about it.  They were the parents of his friends and had known him since he was a baby.  Some of them would try to make me feel better.  “All brothers fight” they’d say, “Yours are just more intense.”  Some would look at me with horror or, worse yet, tell me to try things that I’d done long ago and found pretty worthless.  It was clear that they thought it was either my skills or persistence that needed shoring up.  I learned to avoid these discussions and got pretty good at deflecting questions. I learned to be quiet.

It isn’t just friends you are careful with. It’s your child’s teachers, his pediatrician and many others in his life.  We all live in a society where the stigma around mental illness can stop us in our tracks.   It’s far more serious than a lack of understanding. People repeat things to you that cut you to the quick and you learn not to tell them what you are going through.  Instead,  you talk about the Red Sox and gardening.

Then we turn to the mental health professionals, who we think, have seen all of this before.  We learn once again, that we are often on our own. Insurance pays only for short visits with lots of paperwork requirements.  There is  a shortage of mental health professionals with expertise on the most “serious” kids.  Parents like me are told, “I’ve done all I can for your child” and we observe he is not much better. We learn to manage the crises, lower our expectations of help and keep going because we know the burden falls on us in a way that would be unthinkable with another kind of illness.  I’ve read that Adam Lanza’s mother found that only she could defuse his crises. I’m sure that’s what she did until she couldn’t any more.

Finally, if we are lucky, we find other parents like us.  For many it’s both difficult and a relief to say my child is out of control or hurts himself or can’t seem to succeed.   But this time the other person says, “Yes, I know.  It’s like that at my house, too.”  We share, we cry, we laugh.  We applaud each others’ successes and commiserate over the failures.  Most of all we brainstorm, we point each other in the right direction and we slowly make progress.  And we are not quiet.  At least not until we leave the room.

After a profound tragedy such as the shooting in Newtown, Connecticut, talk turns to ways to identify the next Adam Lanza. To do that, we need to be able to talk about our children and our families and receive back compassion, understanding and good advice.  Until that happens, many of us will stay quiet.

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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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Being more than that

March 27th, 2012

I was first diagnosed with a mental illness when I was fourteen. I had been depressed, anxious, and experiencing hallucinations for about two years, but I started reaching out for help when I started hurting myself. When going through the tumultuous journey through many a crisis, med changes, and mood swings, it’s hard to keep people from finding out that you’re going through hell and even harder to keep them from judging you. Before I had been admitted to a psychiatric hospital (and it seemed like everyone in my entire school found out), I wasn’t very popular, but I wasn’t a target for harassment either. As soon as my peers got wind that I was the least bit different however, it was open season.

I remember my first day back to school after having been in the hospital for three weeks. My close friends had known my whereabouts while I was away and I had trusted them not to blab that information to the entire middle school, but of course being adolescents who were bent on popularity, they did. I walked the halls to my classes that day, and everyone stared. Some people quietly giggled, muttered words like “crazy” and “insane” while others just plain laughed in my face. Just weeks before I had been one of them, but in an instant, I became an outsider.

Eventually my friends started slipping away too and I pushed away the ones that remained because they just didn’t get it. Because of the stigma surrounding mental illness and people’s unwillingness to learn how it can affect you, I decided that I was a monster who was undeserving of friendship and support. If people hated me because I was something they didn’t understand, well then you’d better believe I was going to hate them too! That was my mindset for at least three years.

My parents were and remain my biggest supports, despite my father’s untimely death last April. When I wanted to quit school because I no longer wanted to be around people who couldn’t even begin to comprehend what I was going through, they pushed me to attend an alternative school instead of the overbearing charter school. When I wanted to end everything because I was convinced that my life would never get better, they sat with me for countless hours, lending me their ears and shoulders. And when I cursed myself for being mentally ill, they uttered the same mantra over and over, “You are not your mental illness.”

Out of everything– all of the medication, hospital stays, forced respite care– this stuck with me the most and I started exemplifying what my parents had etched into my skull. I was not my mental illness, but merely lived with it. This life changing realization made me view stigma in an entirely new light.

Stigma will always suck. Being judged for something that’s completely out of your control, whether it be mental illness, physical disability, gender, nationality, or anything else, will always negatively affect those who are being stigmatized. It is exactly that ignorance that makes it hard to be different and accept yourself for it. Who wants to be different when it’s not acceptable, right? What I realized after my parents continuously told me that I was not my mental illness was that I was a person. A person with a name. And feelings. And a family. And pets. And hobbies. From that point on, my resiliency has only gotten stronger, and even though stigma is a part of my life, it does not embody me.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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Have a little faith

March 12th, 2012

When my son was in elementary school, we decided to go back to church.  We had belonged to a church when he and his brother were very small.  I taught Sunday school, mostly for preschoolers, so I could keep an eye on him.  We were part of a small but vibrant church community and we valued that.  Then he took a nosedive into a series of mental health crises.  Getting anywhere was a challenge and church fell by the wayside.

We moved back to Massachusetts and decided to try church again.  We asked around and chose a church with a reputation for being welcoming and accepting.  My sons began Sunday school and I looked forward to an hour each week when I could be part of a supportive community.  It went pretty well the first week.  By the third week, the Sunday school teachers were coming to find me and ask if I could come help them.  My son had a hard time sitting still, they said, or focusing.  He seemed extremely fearful some of the time and “wired” at other times.  They simply had no idea what to do and felt pretty frustrated with him when their strategies didn’t work.  Welcome to my world, I thought to myself.  We lasted only a few weeks longer. 

A study published in June 2011 by Baylor University examined the relationship between mental illness and family stressors, strengths and faith practices among nearly 5,900 adults in 24 churches.   The study found that mental illness in a family member can destroy the family’s connection with their religious community and many affected families leave the church and their faith behind. The results found that 27 percent had mental illness in their families, with those families reporting double the number of stressors, such as financial strain and problems balancing work and family.  In addition, those families said support and assistance was very important to them, while their congregations seemed to overlook this need entirely.

I have continued to hear stories from families about the disconnect between what they hope for from their churches, synagogues and other faith communities and what they actually receive.  Some have been advised to discipline more, to love more, to seek a therapist (most already have) and to be patient.  Many are told that “God doesn’t give us more than we can handle.” Most parents, however, are not looking for advice.  They are looking for support, acceptance and a place to belong. 

A few years after I had stopped attending church with my sons, I was running a support group for parents like me.  While some had managed to stay connected with their religion, many more had had negative experiences.  One mom came week after week and described how she was trying to get her daughter confirmed (they attended Catholic church) and how it was very important to her.  She had made a hurculean effort to bring her daughter to class consistently.  She had coached her, steadied her and intervened for her.  At the end of the confirmation classes, her daughter was required to attend a weekend retreat.  The church staff said they absolutely could not oversee or administer medication and she knew her daughter couldn’t go without her meds.  At first, they wouldn’t allow her to drive out with the medications and all seemed lost.  She pushed, she insisted and ultimately was allowed to drive out each morning and evening to bring the medications.  Her daughter made it through the weekend and successfully completed the retreat.  But she had to fight to make that happen.

We’ve made strides in ensuring that children and youth with mental health needs are included in school activites and community events.  Parents find the one cub scout pack that welcomes boys with ADHD or the only pottery class that is fine with anxious girls.  However, many simply walk away from the religious community they grew up in when they find their children are not accepted and they feel judged as parents. 

Parents whose children have mental health needs want and deserve supporting, accepting and welcoming religious communities.  Here in Massachusetts, we have made a committment to providing treatment and services in the community whenever possible.  We encourage wraparound teams to identify and seek out natural supports and churches, synagogues and mosques are often used as examples.  But most places of worship need training and education for their staff and volunteers, who often hold the same stereotypes as others who don’t have a family member with mental health needs. With a better understanding of how they can help and concrete steps to make it possible for families to be part of a faith community, the connections can be strengthened and renewed.

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Saints and survivors

July 4th, 2011

We’ve all heard the statistics about the numbers of children who have mental health diagnoses, how they can lead to formidable problems in school as well as impact their relationships with friends and family. For some, the result can even be suicidal thoughts or acts.  It’s unsurprising that many parents can find these facts frightening and veer from disbelief to trying anything that might fix things.

I’ve known hundreds of families who attempted everything they could dream up to avoid having their child diagnosed with a significant mental health disorder.  Diane, a mom of four, had read that endorphins could counter depression.  So she went to Costco, bought a large trampoline and insisted her teen son work out on it every day.  He got fitter, but his depression got worse, endophins or no endorphins. Other parents have tried diets, herbal remedies and star charts hoping that a simple solution will fix an often complicated problem.

In the midst of dealing with all this upheaval around their child’s mental health needs, parents often find their marriage, financial health and ability to hold a job takes an enormous hit. While the data about children with mental health needs is sobering, the impact on their parents is equally appalling and very little attention is paid to it.  They face the steepest challenges of any group of parents, but get the least recognition and support.

This isn’t simply a result of stigma, though it certainly does play a part.    Parents of children with mental health needs have the highest divorce rate of any group of parents whose children have special needs.  A 2008 study reported that couples who have a child with ADHD are almost twice as likely to get divorced before their child is eight years old, compared to parents of kids without ADHD. In addition, among the two groups of couples studied who had divorced, the marriages with children diagnosed with ADHD were shorter than the marriages without children with ADHD. 

Other national surveys of children with special health care needs indicate that parents of children with mental health needs are more likely to lose their jobs or live in poverty. Up to 24 percent of families of children whose special needs had a major impact on their family reported that at least one parent had to stop working or cut work hours to care for their children.

Parents also report that their health insurance benefit is inadequate for their child’s mental health treatment and have to pay out of pocket for necessary services. PPAL’s 2010 report, Overcoming Barriers in Our Community, found that 32% of respondents said their child needed a treatment their insurance didn’t cover and 30% said that the copayment for therapy was difficult to afford.  In addition, almost 25% found it was difficult to pay for their child’s medications.

Many parents of “typical” children might find it overwhelming just to get up in the morning and face all this, let alone successfully navigate or manage it.  Parents of children with mental health needs ought to be seen as saints and survivors.  Our hats should be off to them.  Instead, they are often blamed and undervalued. 

While government and private foundations find money to invest in researching the causes of autism or childhood cancer (as they should) there is an assumption is that poor parenting choices, drug company conspiracies or shoddy diagnosis are some of the reasons for a child’s mental health needs. Parents of a child with a psychiatric diagnosis are more likely to be judged by others than parents of a child with developmental delays or chronic medical conditions.  They are also less likely to have the social supports and community connections that helps to support their family.

In spite of all this, parents whose children have mental health needs have created something amazing in this state and nationally.  There is strong family movement in children’s mental health led by those same parents who are trying to keep their marriages together, hold down jobs and be the best parent they know how to be.  It’s growing each day, one parent at a time.  Let’s give them the recognition they’ve earned.

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