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.

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.

Finally, he got stronger and he was able to get out and had all the right meds that would help him. It all changed and life started to get brighter. One small change would lead to the many that would come next. This changed his attitude, his behavior, his mind and allowed it all to change for a “good” portion of the time.

If it wasn’t for that medication and all the help that he received no one would know the nice, kind and strong boy who came out, the boy that he was and whom he continues to be. That young boy has now turned into a young leader, a teenage youth and an inspiration.  He is also the one that has moved home after 7 hospitals, 3 years of residential and over 25 different medications.  Finally after this journey this young youth would become a youth voice for change in both the foster care system and mental health system.

This journey is mine and I continue every day to make it.

—Nico, 16 years old

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.

Unfortunately, not having learned basic life skills, which I think should be taught in every high school whether it be public, private or alternative, my life came to a complete halt after graduation. I was afraid to get a job because I completely lacked the social skills needed to sit through an interview. The thought of having to sit in a room with someone I didn’t know not only made me want to jump out of my skin, but it also made me physically ill. And forget college. I had become so used to being in a school that basically sugar coated life for me that I couldn’t bring myself to try to further my education for fear of being stigmatized by peers and professors due to my disabilities.

Things did eventually get better for me with a lot support and time. In 2009, I started going to college. I started off slowly and only attended online classes. I had an in interest in getting out of the house and volunteering, so I went back to PPAL to volunteer as youth mentor for the youth groups I had once attended as a youth who needed a connection. And last year, I got my first official job as a peer mentor, attended a class on campus at school, and even got my driver’s license.

It’s not impossible for youth and young adults living with disabilities to live fulfilling lives. If taught the right skills, they can strive and be successful and happy.

— 24yr old young adult

One is very loud and you know he’s there, even if he’s in a crowd. The other hates to have attention called to him, being very quiet overall. They both are searching to find themselves and define what they want life to be as they should during those high school years.

Both are incredibly bright, capable and smart. Both have the potential to be very successful in life.

One is driven to take honors courses, is involved in student government and sports and is looking forward to college. He has been working from the first day of high school to identify what will look good on his college application.

The other does not want to go to college but wants to work in an industry that has been his lifelong interest. When this child is presented with the many options high school presents, frustration sets in. I watch and see that when he is taught about possible options, listening comes to a stop.

Both are very stubborn and set in their own thoughts of what is right for them at this point in their lives.

One of these children has significant mental health needs. As a parent, I wonder, Will he be able to meet the potential that I know is there? Will I be successful in teaching the skills he needs to live and work independently? The potential is there, but I wait to see how the cookie crumbles.

Then I wonder about my other child. Will he graduate with the skills that he needs to be successful? Or will he lose his drive that he has when faced with the hard work? Will he meet his own potential?

At home, they seem very close. Always in the same area, asking each other questions and clarifying answers. But things change when they leave the house. They go to the bus stop at separate times, refusing to go with each other. They go through their school day with limited contact. One is so embarrassed and angry when approached, even in a positive way, by teachers who acknowledge his relationship with his sibling. When this happens, he feels singled out. When the two of them meet in the hall, one is so very happy to see the other, loudly greeting him. Once again, my quiet child feels singled out and embarrassed. The sibling that he accepts at home is not accepted in the high school community. He is embarrassed that he is related to him and would rather there is no contact. But at the same time, he brings home feedback on how his sibling is viewed at school – who accepts him and who does not.

—Mom of several children with mental health needs