A Tragedy in the Family – My journey as a mental health advocate

by Steve Boczenowski

Early last year, my wife of 40 years, Deb, & I, who have lived our entire lives in the Commonwealth of Massachusetts, moved to New Hampshire.  After taking some time to set up our new home and get acclimated to the neighborhood, I started to venture out to make connections into my new state’s mental health community.  Last month, I found myself testifying to the state Senate Health and Human Services Committee in support of legislation which would increase access to mobile response and stabilization services.  Here is how I began my testimony: “My name is Steve Boczenowski and I’m a regular guy.  I love the Patriots and the Red Sox.  I love my wife and children and grandchildren.  I go to church most Sundays, exercise regularly, and love to work in my yard.  I’m just a regular guy.  But this regular guy’s life changed very dramatically on December 1st, 2009.  On that day, my 21-year-old son, Jeffrey, took his own life.”

This is just the latest step on my journey as a mental health advocate.  I was reminded recently of the first step that I took on that journey.  It was an evening in May, just six months after Jeffrey had died, when Deb & I and a group of friends organized a forum as a community response to the tragedy that had befallen us.  Jeffrey’s death was still very fresh to us that night and this is how Deb & I chose to describe our beloved son in that moment:

As a child, Jeffrey was full of life.  He had a mind of his own and a jolly laugh that just made you smile.  He could be intense, or he could be pensive, but he could also seize moments with a sense of joy and wonder.  He was always an independent thinker and exhibited true bravado, but he also always deferred to the wishes of his older sister.  Jeff was a sensitive soul, a bit quirky, but was a very charming young lad.

As Jeff grew older, he kept these same traits, but his sensitivity proved to make his life painful at times.  In the 3rd and 4th grades, despite being a good student he would ask repeatedly if he were going to pass or be kept back.  As a ten-year-old on his first real baseball team, his coaches thought he showed promise so they batted him lead-off in the first game; but after striking out four times, he was devastated and didn’t swing the bat again for many games thereafter.  He hated family disagreements, and worked hard to please his parents.

As he entered puberty, his moods turned darker.  He dressed in black and brown, grew his hair long, and his moodiness increased.  Always a shy boy, Jeff turned even more inward; he lost his love of sports and would frequently question the motives of his teachers.

Throughout all this, we, his parents, stayed involved in his life: Deb led a Camp Fire group and taught Sunday School classes; Steve coached him year after year in basketball and soccer.  We had dinner together most nights, helped Jeff with his homework, and always stayed in touch with Jeff and his friends.  We participated in many family activities including church, visits to grandparents, and family vacations.

Despite our best effort, Jeffrey took his own life late last year.  And we are left to ask ourselves why.

We mourn the loss of our son.  We have many unanswered questions.  But in the final analysis, the answers to those questions will not bring Jeff back to us.  And while we miss him terribly, it is our hope that Jeff’s death will not be in vain.  We hope to use his story to help to educate parents and their children so that they might pursue appropriate treatment if they experience mental illness.  That’s what tonight is all about.

The goal of that well-attended forum was to provide useful, practical guidance for parents.  We spent a lot of time figuring out how to best meet that goal and we decided that Deb & I would share anecdotes from our experiences with Jeffrey to identify obstacles that we encountered in getting Jeff the treatment he needed.  We also recruited two local treatment providers who discussed the obstacles we described and then proposed solutions that parents could employ.

Our group of organizers got together a few days after the forum to debrief and we were all quite enthused at what we were able to accomplish.  We decided to keep working together and we named ourselves Teenage Anxiety and Depression Solutions (TADS).  All of our group had some connection to mental health: some as parents, some as school guidance counselors, first responders, an emergency room mental health triage, and a clinician in private practice.

Meanwhile, Deb & I were doing the work of managing our grief.  We attended suicide loss support groups and did some reading.  We also reached out to the Massachusetts suicide prevention community, the Massachusetts Suicide Prevention Coalition (MCSP), which provided us with a good deal of education and support.  Through our participation with MCSP, we were able to make very good connections, which informed our work with TADS.  Nine years later, I realize that my work with TADS was an important part of working through the grief of losing my son.

But in those early days, we needed to figure out how to shape our work with TADS.  (We also took the necessary steps of becoming a 501(c)3 non-profit organization so that we could raise funds.)  We knew we wanted to leverage our story to help people, but I felt strongly that just telling my story was not enough.  Sharing a story raises awareness, which is helpful, but there is more to addressing the problem than just raising awareness.  From my perspective, parents are largely ignorant about mental health issues.  What does depression and anxiety look like?  What are symptoms that we can observe?  What’s important and what’s not?  So, beyond raising awareness, from the beginning I felt that it was important to help educate parents.  For several years, I would insist on sharing my story only when accompanied by a mental health professional.  (After listening to experts for a few years and attending several seminars on mental health, a widely-respected clinician assured me that I had developed sufficient background to provide the education piece myself.)

Also, from the beginning, Deb, an 8th grade math teacher, felt strongly that we needed to help middle schools and high schools educate their students about the perils of mental illness, including (but not limited to) suicide.  In those first few months of participation within MCSP, we encountered an organization called Screening for Mental Health which had developed an evidence-based suicide prevention curriculum for middle schools and high schools known as Signs of Suicide (SOS).  (Screening for Mental Health has recently been renamed to MindWise Innovations.)  Beginning in September, 2010, TADS annually hosted free one-day suicide prevention training for educators by hiring trainers from Screening from Mental Health.  More recently, Deb & I have received training to become certified trainers for the SOS curriculum and provide the training ourselves.  Over the past nine years, we have trained over 500 educators.

But awareness and education were still not enough.  The message that I would provide parents went something like this: Here’s what happened to our family; if you see these signs in your child go and get help!  But go and get help is a really difficult task for parents.  Because of the stigma associated with mental illness, it is not part of our public discourse.  I would tell people, if my son had a knee injury from soccer, I could go to the school bus stop and ask for recommendations for a good orthopedist; but when your son has depression, you don’t feel comfortable asking other parents for a recommendation for a good therapist.  Consequently, we struggle.  I remember accessing my insurance company’s list of therapists – names and contact info for local therapists, but with no other information or details.  As I stared at the computer screen, I wondered if I could trust any of these individuals, unknown-to-me, with the health of my child.  Recognizing this shortcoming, the newly formed TADS board started to discuss the best way to compile our own list of local therapists.  We were aware that compiling such a list would be difficult and it would soon fall out of date.  And we wondered if such a list would be sufficient – would it aid parents in finding a good match for their child, which is critically important in providing quality mental health care.

Then one afternoon, Deb & I were helping out at a local mental health fair and we encountered an organization that had already performed much of this difficult work and provided a telephone service to make quality mental health care referrals.  This service, INTERFACE, was provided by William James College, a graduate school for psychology majors and used graduate students to staff the telephones.  (INTERFACE is available only in Massachusetts.)  In a nutshell, the INTERFACE Referral Service provides personalized counseling referrals matched for location, specialty and insurance.  No fee is charged to the individual making the call, but the community licenses with William James College to provide this service for their residents.  Over the next few years, TADS raised funds to pay for this service for several area towns, and then convinced the local municipalities to pay the annual service fee with public funds.  We also advocated on behalf of INTERFACE to other cities and towns in Massachusetts.

Thus, our mission was complete: TADS addresses mental health issues, especially among young people, by raising awareness, providing education, and enabling access to care.

In subsequent blog posts I will describe some of the highlights of our work with TADS and where our journey has led us.

 

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