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.

Tags: behavioral health, CBHI, Children's Mental Health, children's mental health week, families, mental health, parent, stigma, suicide, Yolanda's Law

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Growing up on medication

April 30th, 2012

Most parents know that the topic of psychotropic medication is charged with emotion.  Everyone from your friends to the anchor on the evening news seems to have not just an opinion, but a judgment.  This month a new book, Dosed: The Medication Generation Grows Up hit the bookstores.  Kaitlin Bell Barnett, the author, argues that American society needs to start listening to the people with the most credibility — the generation who grew up taking these medications.  She says we need “to stop bickering about whether or not kids were “overmedicated” and should, instead, listen to the people best positioned to comment on the subject – the generation of young adults now in their 20s and 30s who spent their formative years taking the controversial drugs in question.”

For her book, Ms. Barnett interviewed several young people in their 20s and 30s.  She tells their stories and explores some of the issues they face, including the impact of medication on a developing child’s sense of self and the toll taken by medication trials and side effects.  Some felt they had little input into the process of deciding to use medication or weren’t told why they were being given a particular pill.  Some grew up to reject medications while others continued taking them.  There is no single experience and there is no consensus.  However, there is a strong, compelling voice added to the debate whether the benefits of medication outweigh the negatives.

Several of the points made in Dosed reminded me of the 2008 PPAL study on psychotropic medication.  While we were going to survey only parents on this topic, we were also able to survey almost 70 youth and hold three youth focus groups.  These young people were 12 to 19 years old, younger than the group interviewed by Ms. Barnett.  But some of their worries about side effects and frustration with unclear information were very similar.  Parents who were surveyed also reported that their insurance was more likely to cover med checks (76%) than therapy visits (53%).  Ms. Barnett also makes this point.  She says that Medicaid and private insurance are “both eager to keep costs down, and therefore preferred relatively cheap psychiatric drugs to long-term talk therapy (despite a growing medical consensus that the most effective treatment for most psychiatric conditions was a combination of medication and therapy).”

For the first time, there are millions of young adults who took one or more psychotropic medication during their growing up years.  In the 9 years between 1987 and 1996, the number of youth under 20 taking at least one such drug tripled, going from 2% to 6% — an increase of at least one million children nationwide.  In 2009, 25% of college students were taking psychotropic meds, up from 20% in 2003, 17% in 2000, and just 9% in 1994.

Many parents report that their children vacillate from opposing meds, to reluctantly trying them, to seeing the positives and negatives and then back again.  Parents, too, often have mixed emotions.  They seldom make the decision to use psychotropic medication for treatment in a neutral, stress-free environment.  They receive conflicting messages not only from their children, but from their extended families, schools and society at large. 

Kaitlin Bell Barnett offers advice to parents, garnered from her own experience and observations. Strong, clear communication is essential, she writes.  Even more essential is taking the time to listen to your child’s feelings and thoughts about medication.  She urges parents to explain why the medications are needed and include them in decision making as much as possible.  She counsels parents to listen to their children’s worries and attitudes about medications and find a therapist who is willing to talk about this topic.  She notes that resisting or rejecting medication is common but parents can mitigate it by having a trusting relationship with their children.

I’ve often said that the most important thing parents of a child with mental health needs can do is nurture and value the relationship they have with their children.  In our medication study, youth told us that while they like speaking directly to their prescribing doctor, they relied on their parents for information and a better understanding about medication. It’s still a highly charged subject.  The best thing we can do is to listen to each other.

Tags: behavioral health, Children's Mental Health, Dosed: The Medication Generation Grows Up, families, insurance, Kaitlin Bell Barnett, mental health, mental illness, parenting, psychiatric medication, psychotropic medication

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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.

Tags: behavioral health, Children's Mental Health, families, health, mental health, mental illness, parents, stigma

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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.

Tags: behavioral health, children, Children's Mental Health, church and mental illness, families, mental health, mental illness, parent, parenting, parents, religion, stigma

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Life Skills vs. Social Skills

February 16th, 2012

I remember learning to cook as a small child, helping to bake cookies and enjoying the time that I spent with my grandmother as she made cookies to bring on vacation with us. It was fun, it was important and most of all it taught me skills.

I also remember as a child going to buy something , not having enough money and having to put it back on the shelf. Sometimes I went to the local corner store and bought milk and bread. It was a great feeling when I was the kid chosen to go in alone.  It was a game to see who would get to go walk a mile to go get the milk  and if you were given that level of trust.  If you walked, you could also get a piece of candy. My mom and grandparents were crucial in teaching me life skills at a young age. If anything, I was taught more and at a younger age than I teach my own kids.

When you have children with special health care needs, life skills and social skills come only when it’s time. It is hard to determine what to teach when. I continue to look for that elusive manual that tells you when to teach your child how to go in to the store alone and trust that they know enough not to eat the candy that they do not have money for.  I continue to wonder when to teach my son how to go into the post office and buy stamps alone and add up how much it will cost. He looks at me and says, “Can’t you just buy them online and it will add it for you?” Yes, of course, but I am trying to teach life skills, not the skill to google the world. That is taught enough.

There are wonderful authors who have written about life skills and social skills and you can download lots of ideas.  But it’s hard to teach the emotions, behaviors and understanding that it takes to make a cake, do the dishes, know how to complete a recipe, or clean the kitchen. It is even harder to teach going into a store alone, the post office, bank and/or ordering pizza in person or on the phone. It takes skill, practice and a lot of repitition for any kid as well as clear directions and teaching of the steps.

It has been an eye opener for me over the past few months. My son moved home from residential. His emotions are in check. He is able to talk and let me know when he feels I have not heard him. For social skills and emotional regulation, he gets a B plus.  He continues to struggle with being able to go into stores to get milk. We’ve discussed where the coolers are so that he could remember. He has refused to order a pizza on the phone because, well, that is just too hard. Life skills continue to be a struggle daily. But with practice he will catch up . He is determined and so am I.

My middle son, the community child, has done an amazing job learning life skills. Ordering a pizza is no problem, cooking dinner- no issue, and clean – got it! He makes complete dinners and has for the last 4 years. Loves cooking since age 11. He can also do the stamps on the bills and knows where to put the stamp- that is a life skill too! He continues to put the family’s needs ahead of his own.  But the anger, the emotion and the connection to allow friends and family members to give suggestions or have a conversation is hard. Social skills continue to be a struggle in his life.

Finally, there’s my daughter.  She is developmentally about 10 years younger than she is chronologically. She works on life skills and social skills daily. It is a daily routine in our house to do, learn and teach each other. I am a lucky mom to have three sensitive and caring children. My challenge is getting them ready to spread their wings. It will happen in its own time and mine. What won’t wait is the society around them. The world is not a patient place sometimes for our kids. It takes time for many to remember that kids are kids and teens are teens.   

So as you go into that store and see a teen or adult looking for the milk – ask if they need help. They just may need a little direction to allow them to gain a skill.  Remember both my sons and daughter have had many challenges, triumphs and teaching opportunities as they have grown but it may take your kindness to help them “get it”.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

Tags: behavioral health, children, Children's Mental Health, families, life skills, mental health, parenting, social skills

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