After Mental Health Treatment - What? Fellowship Place Gets it Right

Ten years ago, I toured a community with the following mission:

To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.

This community is called Fellowship Place, and it represents what can happen when people come together to look past medical treatment alone - and add housing, purpose, structure, and community to the picture.

At the time, I wished Ben might be interested in living in such a caring, well-thought-out community. He wasn't. But now, ten years later, he is open to the idea.

The only problem is: it could take a decade before a place opens up. I wish I'd put him on the waiting list ten years ago. It might take that much time.

We need more places like this.

Hear why: 

Out of the Hospital, Not Out of the Woods

It has been almost four weeks since I picked Ben up, curbside delivery (not allowed to enter the unit due to Covid) from his over-five-month stay in a “behavioral health center” (AKA psychiatric hospital). He was so full of hope, the day so full of promise - but we family members know to enjoy the moment, and prepare for a fall.

Man, I hate to be right about this. But I knew  - I knew - he was on the wrong medication, and it was only a matter of time.

Timetable of deterioration:

(first few days covered in more detail in the earlier post):

It doesn’t take long to lose ground

Thursday, Feb 4th - pickup, home to pack, delivery to new housing I’ll call B Home (very very grateful for that arrangement, don’t get me wrong). Ben seems excited and open to his new life.

Friday, Feb 5th - I drop off a few items he forgot, and already Ben seems off. He’s on a time-release injection of Haldol, and wasn’t kept in hospital long enough to observe how to time the next needed dose.I call to inform the psychiatrist via Ben’s case manager (who can ever get the actual doctor on the phone?) and am told he’ll get back to us on Monday. That’s three more days that Ben can deteriorate. 

Monday, Feb. 8th - the doctor has done nothing. No oral boosters prescribed, no change in the next injection date. Ben seems not much worse, which is good, I guess - but he is still not good. Families know. 

Thursday Feb 11th - I drop off a few shirts to Ben at B Home. He holds it together enough to talk to me through the car window.

Good news: he is wearing a mask. 

Bad news: he has gone on a shopping spree for hoodies. He has about 60 hoodies already, folded neatly (by me, while he was hospitalized) on a shelf in his old room.  

Man, I hate to be right about this. But I knew  - I knew - he was on the wrong medication, and it was only a matter of time.

He is stable (ish), but it’s like the nine years he spent getting off Disability and working up to full-time employment have been erased completely, like an extended version of the plot of Groundhog Day. 

We still have not heard a peep from his psychiatrist.

Feb 15-19 - I am so grateful that Ben is in B Home, and not with us. I think my heart would break every day seeing him like this. Texting and phone class, even facetime, are helpful. He’s pretty good on the phone.  

I do have a long conversation with the B Home Social Worker, who seems caring and informed. She actually listens to me as I share Ben’s medical and work history. She is amazed that he used to work full time. I’m sure she can’t see that possibility in him, the way he is now.

Meanwhile, the money questions pile up. Did Ben have Social Security reinstated? I’ve been working on this since October.

I speak to Social Security, to DSS, to his benefits manager, to the residence staff….and everywhere there is a different story. 

Ben lost medical coverage...no, wait, maybe he has it.

Who will pay his rent? 

Are his medications covered? Yes, they are. No, wait, they aren't. 

One system says yes, the other hasn’t gotten the memo. 

This is a SNAFU paperwork nightmare. 

I am told that if Ben weren’t on the “fast track” these decisions would take two years. Two years! 

Feb.20-24.

A new wrinkle.

Ben’s case management team is suddenly being disbanded. He has been within them for 18 years.

Now, a whole new team to train. I hope they’ll hear our story. I hope they are better.

I hope the doctor is more attentive, knowledgeable, helpful, caring. 

I am wishing for a lot. As ever.

Meanwhile, Ben’s “rent” has not been paid because no one knows where his benefits stand. I write out a check for almost $1200 and mail it in to B Home. I cannot afford this. But of course I pay the bill.

And, Ben is failing. The B Home staff tells me he is twitching, gesturing with his hands, mumbling, eyes darting off to the side. Also, He’s isolating in his room whenever he can, listening to his music. 

This, my son who waited on a full station of tables just a year ago and kept it all straight and came home full of joy about the social interactions.

I know these signs. The voices are getting louder. 

God, please help my boy.

The psychiatrist has yet to order oral Haldol boosters or move up the injection.

This didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Feb 25 - finally, Ben is scheduled to get his next long-acting Haldol injection. It’s happening tonight.

But no.

At 7 pm I get a call from B Home. The pharmacist doesn’t see any medical coverage and won’t fill the prescription. This just becomes a thing at 7 PM? 

“Don’t worry,” they say. "If he gets more symptomatic we’ll just get him back to the hospital."

What?

But no one even knows if he has medical coverage. The case is still being “decided”, according to the DSS case manager I spoke to yesterday. This has been going on (I repeat, sorry) since October.

And this didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Many many phone calls later (bright spot: the benefits manager calls me back even tho it’s past her workday hours), I am assured this will be straightened out by morning. If Ben gets through the night without full-blown psychosis.

If.

I hold my breath. But I do sleep. The benefits manager told me to.

Feb. 26 (today)

We think he’ll get the injection today. We think it has been straightened out, that the pharmacist will fill the prescription, that the nurse will arrive, that Ben will not run away from her (that has happened before)..

I’ll believe it when I get the final word. 

No, out of the hospital does not equal out of the woods.

And so many others have it so much worse. At least Ben has a roof over his head, staff to manage his care, a family that loves him.

But it could be so much better.

Quoting Willy Loman (again, and just as fruitlessly it seems) from Death of a Salesman:

 Attention must be paid.

NAMI Palm Beach Keynote - Support, Education, Acceptance

Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL - a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!

The full version of this keynote is available on YouTube. Here, however, are just a few highlights:

What's the Difference When Your Child's Illness is in the Brain? "Sympathy"

60 minutes recently did a segment on the plight of families dealing with mental illness.  They interviewed many families and healthcare professionals in Connecticut, on how our system fails our Mentally Ill Youth in Crisis.

Deeds: “The system failed my son”

Virginia State Senator Creigh Deeds speaks out about how he was attacked by his son Gus, who suffered with schizophrenia. Virginia state senator Creigh Deeds suffered multiple stab wounds, and his 24-year-old son Gus died from an apparent self-inflicted gunshot in what police are considering an attempted murder-suicide.

Read more: Virginia State Senator Creigh Deeds' Son Evaluated and Released Before Stabbing | TIME.comhttp://nation.time.com/2013/11/19/before-senators-stabbing-a-shortage-of-psychiatric-beds/#ixzz2rzmupJD6

Connecticut families, in the continued aftermath of the Newtown shootings, still face the same issues of lack of beds, a revolving-door mental health system, and lack of support and help.

How I wish they had interviewed me, too - but the stories of Deeds and the other families are heartbreakingly similar. Sadly, the story in my book is not unique. Many suffer the same issues we do, every day, without support or even understanding.

In the "overtime" segment about stigma, a group of families shares the effect of stigma on their experience, and how a broken leg can bring casseroles, while a mental illness can bring warning letters from the lawyers of your neighbors.

What's the difference, according to one of the parents interviewed? "Sympathy."

Watch the clip here: http://www.cbsnews.com/videos/nowhere-to-go-mentally-ill-youth-in-crisis

"Socialization Over Isolation": Jani, Ben and Community

I am a firm believer in the possibility of Recovery in Mental Illness.

Does "recovery" mean "cure"? How I wish it did - but, at the present time, it means management of symptoms, and it means rebuilding  - of one's life, and also of neural pathways.

I have watched and guided my son Ben through a decade of recovery - the ups and downs, the crises and the careful restoration afterwards.  What this has taught us is that there are four cornerstones to the foundation of the recovery process:

• Medical Treatment (whatever that means for each individual)

• Structure

• Purpose, and

• Community. Love.

Since the publication of Ben Behind His Voices two years ago, there have been three additional steps in Ben's recovery process. One is that he now is employed, and has been for over two years. I've written about this in past posts if you want to know more about that (but it has strengthened the Purpose and Structure cornerstones). The second is that he now rents a room from us, his family. After eight years in a group home and then system failure (also a subject of past posts), home is the best place for him right now, as we continue to hold onto support systems for case management and the path to greater independence for Ben in the future. This experience has also added strength to the Medical Treatment (we supervise meds) and Community/Love corners.

The third change is the one that has also been a surprising boost to that cornerstone of Community. Ben's life now includes friends - including one that currently also rents a room from us, someone Ben met at school. This friendship had brought out a lot in Ben that seemed limited before: talking about relationships, taking bike rides through the woods, hiking, playing card games and video games that are not solitary.  For the first time in over a decade, I hear the sounds of  laughter, cheers, and cars in the driveway as other friends come over to hang out. And, yes, at last, with some of these friends, Ben can say "I'll be right back. Just gotta take my meds with my Mom." A miracle.

Wow. Socialization over Isolation. Yes, please.

The Jani Foundation is championing this cause by planning events for children with SED (serious emotional disturbances) to relate to each other - to provide community where they don't have to feel isolated. (Jani is the subject of the book January First (written by her father, Michael Schofield), and the follow-up airing of "Born Schizophrenic". They have created this t-shirt which echoed my feelings about Ben's recovery. Socialization, especially in places where you don't have to always feel "different", is vital to the process. I learned this in 2001, when I was allowed to attend a meeting of Schizophrenics Anonymous.  This excerpt from Ben Behind His Voices tells the story: 

"I once attended, in 2001, a meeting of Schizophrenics Anonymous. This group is based on principles similar to the twelve steps of Alcoholics Anonymous. After a lengthy conversation with Charlie, the founder of the local chapter, I was granted permission by the group to sit in. The week I went, there were about seven or eight people attending, in various stages of recovery. They asked me to share my perspective as the mother of someone with schizophrenia, and they spoke of their own paths toward recovery. Afterward, we all went out for pizza—because, as Charlie told me with a smile, “We need to practice socializing, you know.” They got the joke. “Besides, the pizza’s only two dollars a slice,” said Bill, another group member. I loved these people. They even joked about their past. They shared a genuine laugh over things they had once believed about themselves: that they had “known everything,” that they were meant to be elected president. This was the first time I had ever heard these stories told with any humor inside the tragedy. It felt like the ultimate acceptance, being able to laugh with each other about it. They had found community, and they had found laughter."

The feeling of community can also happen in Clubhouses,  programs where members are given purpose, and not just a "place to go". People with mental illness, like all of us, have times where they need to be alone and regroup. But too many are isolated too often - as are their families. I have spoken with Jani's parents, and even though we have never met, we share a bond. So do Jani and Ben. They just may not know it yet.

NAMI: How Strong Can an Affiliate Be?

The answer: Very Strong.

NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national.  I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.

And, as a speaker and broadcaster, I've had the honor and privilege to see NAMI in action, in so many ways.  As a family member, I know that NAMI helped me to:

• learn about and accept my son's illness

• know that I was not alone, and

• find ways to turn our grief into advocacy and action.

Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness "consumers", others say "clients", or "patients", or "individuals"...and the debate on the right term may go on.  However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.

Keynote on Mental Illness: From Chaos to Hope

Last week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed "From Chaos to Hope." So close to the subtitle of Ben Behind his Voices...it had to be fate.

When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.

The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social work professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening's Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.

I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it's properly supported.

NAMI Educational and Support Programs, and Beyond

NAMI Summit County, in addition to providing the Educational and Advocacy services we often associate with a NAMI Affiliate (support groups, speaker series, Family-to-Family, Basics,  and other educational programs), offers assistance to those who are striving to cope with a brain disorder. These programs include:

Housewarming

Housewarming provides new, basic household items to assist persons who can now live independently. Since the program’s inception, over 1,000 requests were filled (207 in 2011, alone), aiding in the transition to leading and independent life.

Needy Soles

Needy Soles footwear provides shoes, socks and other footwear to those who cannot afford to buy their own. 664 pairs of shoes were provided in 2011 via vouchers provided through our local Community Support Services organization.

Hair Care Program

Limited income can mean sacrificing basic personal care. A trip to the barber shop or salon promotes self-confidence while providing a basic need. Clients may obtain a voucher redeemable at the Akron Barber College. 608 haircuts were provided in 2011.

Creative Kids

A scholarship program offering the opportunity for kids in Summit County with Mental Health issues to participate in extracurricular activities such as art, drama, martial arts, music and more. 

Recovery in mental illness is a community process, and I am grateful to NAMI Summit County for showing me yet another example of what can be done when someone has a vision, and many work together to make it come true. That, indeed, is the path from Chaos to Hope. No one does it alone.

Thank you!

Why Be Open About Schizophrenia?

Let's talk about the question I get quite often, via reader e-mails, keynote Q & A, or sometimes in the form of a critical tweet or two accusing me of "exploiting" my son Ben by being open about out family's experience with his illness: schizophrenia.

Am I  "Exploiting" my Son by Sharing Our Family Experience with Mental Illness?

No. Because Ben has graciously allowed me to speak.

First of all,  Ben has given me permission to share our story, as long as I changed his first name, relay any messages he asks me to, but respect his privacy by not using adult photos or expecting him to go on the speaking circuit with me.  These things, I have gladly done.

While not willing to talk about schizophrenia (or even, frankly, agree that the diagnosis is correct), Ben does realize that by speaking (from my point of view as parent), we may be helping other families to cope, understand, and sometimes  come back together.  So this is something we have done, together, each in our own way.

Why be open about mental illness?

To reduce stigma by increasing understanding.

This video, produced for the "Stand Up for Mental Health" campaign at Healthy Place, explains how "through stories, we get the human face of any condition" and "fight for:

• Respect

• Advocacy, and

• Equality"

Please share, and check out the other videos there, if you know someone who may need to feel less alone.

The Tragic Newtown Shooting: Attention Must Be Paid

The horrors of 9/11 got us into wars overseas, and the memories continued to be used to justify our involvement there. Will the tragedy in Newtown get us into a war against easy access to assault weapons, underfunded mental health services,  stalled research, and lack of support?

Never Forget. Act to Prevent.

Details continue to unfold about what might have contributed to the horrific incidents Friday in my neighboring town of Newtown, CT.

It is beyond comprehension, yet we struggle to find some threads that might prevent a repeat of it.

Many will, I hope and pray, start to listen and make changes to some of the issues involved: smarter gun control, earlier detection of mental health problems, and more access to (and insistence upon) treatment for those problems.

As we struggle to "search for solutions" (this week's topic on Good Morning America), I hope we also get to find out what Adam Lanza's mother, Nancy, had struggled with.

• Did she try to get help for her son, only to be denied because he was "legally an adult, and there's nothing we can do now"?

• Was she left with no choice but to home-school her son after he dropped out of high school?

• Was she lost in a desperate attempt to hang on to some sort of bonding with a son she loved, but was losing to mental illness? (in her case, by teaching him about guns, taking to shooting ranges)

• Did she even know how to navigate the confusing world of mental health services, only to find no road map, no support, no funding?

• Did the stigma and blame of having a son with mental health problems keep them isolated and feeling there was no community left for them?

All of these things were true for us, at times. We had to, have to, fight every step of the way to get help, support, understanding. We are lucky. Ben's nature is sweet and peace-loving. Even his "grand delusions" when in psychosis were about writing the perfect poem that will create world peace. Also, we found help and community in NAMI, and Ben got support from an ICCD clubhouse, a residential facility, outpatient treatment, and newer medications that had not existed decades ago.

But the truth of the matter is that too many familes (like, I suspect, the Lanzas) simply give up before they can find help and support. They are left to "fix it themselves." Too many families are wiped out financially (as we were), emotionally (as we often were) and socially (as we sometimes were) before they find new paths to recovery. To help these families, I wrote our book, "Ben Behind His Voices", and advocate for the kind of help that might have prevented Adam Lanza from committing the most horrific crime the world could ever imagine.

I don't "know for sure" (Oprah phrase) that this tragedy could have been prevented. But, as the mother of someone who has a mental illness and has managed to find hope, I can't help but wonder - no, suspect - that the answer is yes. This did not have to happen.

We must all fight for understanding, research, funding of services, turning stigma into treatment, and supporting the families who are, too often, ill-prepared to fight mental illness alone.

NAMI in the Community: Lifeline for So Many

This video, created by Barmont Productions for NAMI in Connecticut, shows in seven short minutes a smattering of some of the ways NAMI has made a difference in the lives of people living with mental illness, and their families and friends. In it, you will hear a small taste of why Ben Behind His Voices is dedicated in part to NAMI's wonderful work: education, advocacy, empathy and more.

As the host of this piece, I got to interview so many amazing people, and can only wish that the hours of footage we got might someday get re-edited into a documentary of 30 or 60 minutes, to pay homage to the many stories courage and love that I heard that day. Meanwhile - watch and enjoy!

http://www.youtube.com/v/zgPN7vnOd-Y

Ben Behind His Voices: One Year Into a Book's Life

Hard to believe that the book launch party for Ben Behind His Voices was over a year ago now. The "new book smell" is gone. How are we doing?

Perhaps writing a book is like being pregnant: you're changing your life, making plans, working hard - yet have no real idea of what is coming into your life. Publication is like giving birth, perhaps - ah, here it is!, maybe the hard part is over.

Tend the Garden of Success Each Day

If that is true, then launching your book out in to the world is like raising a child. You have to work at it, every day - and, even so, there's much that is not truly in your control. You do your best, you try things from every angle, and then you hope that child will grow well, and touch the lives it/he/she is meant to touch.  Keeping book interest high is a garden authors must tend every day - and, like a garden, the seasons are ever-changing.

So - here we are, one year in - and the biggest discovery for me, I think, is that people are still discovering the book.  Unlike a flavor-of-the-month flashy new novel, the memoir seems to be more of a turtle than a hare - and that's just fine with me.

Sure, no Oprah appearance yet. Was booked onto Dr. Drew, but bumped by Hurricane Isaac updates. Ah, show biz.... Still working toward that "magical National appearance", perhaps - but there has quite a lot of press on the local, state, and Public Broadcast level. And, the book is young, and so far very well-received, both by reviewers and by readers who reach out to me.  So I don't think the chance is gone. At least, I hope not.

My publisher, who has had to move on to the new releases, seems to have noticed that book sales are growing instead of fading, as I got a note from my editor: "It’s great the book is still garnering interest.  Usually things really trail off after the first year."

Not if I can help it! Not when I'm still receiving letters from readers like this one:

Your book has been so very helpful to me. I am not done reading it yet, but so far this book mirrors my son's symptoms that I have been explaining away.

Thank you for sharing your experiences with me. Without ever knowing you, I feel very connected to you and your son. Thank you for helping me along my journey.

So, when my editor adds, "Great job!  I wish all my authors were as into it and on top of it as you.  I wish they would get the message that this stuff can help drive sales and recognition." - what does she mean?

Sure, book readings at Barnes and Noble are done - that's so last year. But there's a lot that still works. Mostly it's about finding new reasons to share the story - and there are so many things to fight for, to increase awareness of, in the world of mental health. So the work now is in topics, in the platform:

Keynote at Univ. Mount Union

• Increase respect

• Shift perspective from stigma to stability

• encourage therapeutic alliance for recovery

• see potential and strength

• care for the caregiver

• educate families so they can be allies,

• advocate for services from housing to supported employment and education,

• hear the many voices of people living with mental illness - and their families....

...and on. Hence the speaking topics I offer, and the gratitude for the places I've been invited to deliver them.

The book may be a year old, but the topic is timeless. Where to open the conversations? Everywhere.  This week it was a keynote called "From Stigma to Stability - Changing Minds about Mental Illness"  at a local Rotary Club. This weekend it's a presentation at the US Psych Congress in San Diego,. then a keynote atNAMI NYS conference.  Also getting involved in advocacy with the ICCD (Clubhouses for mentally ill members) to talk about how helping someone with mental illness helps the family too...Hospitals, Universities, Medical Schools, Nursing Programs...and then there is twitter, facebook, my blogs here and at HealthyPlace.com...

Remember - one in four families deals with mental illness in a loved one. That's a lot of folks who need to hear they are not alone.

Year two, here we go! and thanks for your support so far.  I hope you'll continue to share, tell others about this memoir and the work it is inspiring. There's so much still to be done.

And if you happen to know Oprah, well.....that'd be awesome too.

Living, and Sharing, with Mental Illness

Sharing Can Shape Our Lives

Before Ben Had a Job, He Took an Art Class and Made These Beads for Me

"For what we are, we are by sharing...and it is by sharing that we move toward the light." These words come from my temple's prayerbook for the Jewish New Year, and they never fail to re-ignite my sense of purpose each year.

Some seem to need this sense of community more than others, perhaps, but the fact is: we are all on this earth together. All of us. Healthy, or living with an illness or disability. Young, old, in between. Introverts and extroverts. Men, women. Different backgrounds, families, sexual orientations, strengths, challenges.

And what we are, what we become, the mark we leave on this world someday - it's a journey made meaningful by the sharing. And for that, we need each other.

How Stigma and Self-Stigma Can Lead to Isolation Instead

I recently participated in a wonderful panel called "Self-Stigma Solutions", alongside three people who live not only with mental illness but also with the stigma that can come along for the ride - both external and internal. Each person shared how they were either told, or told themselves:

• "your life is over"

• "you'll never amount to anything now"

• "you'll never have friends"

• "you may as well just give up"

Well - these people did not give up. They were down, but came back up. They not only refused to believe the stigma, they learned to change the messages they were giving themselves.  Yes, even with mental illness and all the stigma that comes with it, sharing is possible. One of my fellow panelists is now a lawyer, one a therapist, one a counselor - and all share their stories to help others living with mental illness, and their families. Thank you.

As for Ben, he spent years feeling unemployable - which wasn't easy. How do you answer when people say, "and what do you do?", when it's all you can do to stay out of the hospital? Slowly, though, he began to build upon the sharing he was doing: chores at his group home, a commitment to "Anonymous" meetings, volunteer work, helping us with household chores when visiting. He needed to share, to feel needed. And, eventually, he not only returned to college- he also has been employed part-time for almost 18 months. Ben has a bigger playing field, and a clearer structure, for sharing - and it has added to his recovery in so many ways.

Steps Away from Self-Stigma, and Toward Sharing

Three Steps That Can Help Erase the Negative Messages:
1 - Consider the Source of Negative Messages (they may be ignorant of the facts)
2 - Hang On to the Positives (past success, others who believe in you)
3 - Replacement Messages (e.g. eliminate the word "just" or "only" when you describe what you do)

Yes, this takes patience. Yes, it takes rewording your doubts until they look like problems to be solved instead of obstacles that prevent.  Yes, it takes work, and time. But each of them now share their lives, as does my son Ben.

Share Your Light

However we find community - a group home, a clubhouse, volunteer work, a meeting, your family - we each have something to share. And, by sharing, we let our own lights shine as we move toward the greater light we all create together.

See the person, not the symptoms.
See possibility and promise. It's there, with treatment, respect, patience, community, and hope.

Beyond Hope, to Promise: Treatment Works

For the first time in years, Ben has spoken to me about goals - and he actually has some, that he is willing to share with me.

When you have a goal, it can be risky to say it out loud. What if you fail? What if your dreams don't come true?

Treatment, the Foundation for Progress

For so long, Ben has been busy getting his life back to where it might have been had his progress not been interrupted by psychosis, hospitalizations, and regrouping. Step by small step, he has returned to college part-time, and recently celebrated a full year of part-time employment. But we have not dared ask, "where will this all lead?" or "What are your plans when you get your degree?". We didn't dare. It has been enough, the reality of these first steps. We tend to stay focused on today.

But Ben must be gaining confidence, as he now talks about wanting to "give back to the world" - as a teacher, perhaps, or an author. Will he get there? He just might. But, not all overwhelming goals, I am encouraging him to take one step toward each one and re-assess as the view gets closer.

But none of this would be possible without the treatment he is receiving for his schizophrenia. None of it. Without treatment, he would most likely be homeless, in jail, in a nursing home, or - let's just say it - no longer alive. Now, with treatment (medical, and also emotional and structural),  we have hope, and have taken one more small step:  his life also has promise.

Treatment is too often denied, not funded, not mandated - and that is a shame. Watch this video from the Treatment Advocacy Center about how Treatment Makes a Difference. Because it does. And we must keep fighting for it.

CIT International: A Mother's Gratitude

I have just returned from the CIT International Conference, where I met so many who are passionate about their crisis and mental health work - and though I came there to share  the family view, I learned so much more than I offered.  And yet - everyone who met thanked me for being willing to share our story, and the family point-of-view when crisis hits. Wow. (No, thank you...)

over 400 books personally signed with thanks to CIT folks!

Who was there? Police officers, mental health workers, detectives, Police Chiefs, Psychiatric Nurses, Psychiatrists, corrections officer, security guards, consumers, and family members like David Kaczynski, who spoke about his sibling experience as  brother of the so-called "Unabomber" - though that relationship had so much more to it. David's love for his brother was clear, as was his agony over his brothers' illness: schizophrenia.

When my son Ben was in the first stages of recurring psychosis, when we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this), we had many encounters with our local police officers while Ben - and we - were in crisis.

I am so happy that these officers were trained in crisis intervention - for their kindness and empathy toward Ben, Ali and me made our traumatic situation more bearable.  And - even more importantly - their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.

Lucky for us, we did not have to experience needless "super-escalation."

Lucky for us, our town's officers were either CIT-trained, or listened to the feedback and tips of those on the force who were.

To those who have taken the time to learn and choose Crisis Intervention Techniques over "Power" actions that are also an option, I thank you.  Your kindness and willingness to empathize has made all the difference for this family.

Here's a radio news story on CIT in Connecticut (my home state) from NPR affiliate WSHU - where I sometimes work as classical music host or newscaster.  Mark Herz also did an interview with me on Ben Behind His Voices.

Becoming a Best Seller: The Real Reward

Okay, so not quite a best-seller yet...unless you count being pretty consistently in the top ten in Amazon's Best Seller list in the category ofHealth/Mental Health/Schizophrenia.

Still, the news from my literary agent (Claire Gerus, who is amazing) today, about a year into the book's published life, is a surprise: She actually has a royalty check for us!  This, from the woman who jokingly said to me not long ago (at least I think it was jokingly): "Royalties? What are those?".

So. This means the book is actually making a profit for Rowman and Littlefield (after reimbursement for  their publication expenses), and hence for me and Claire as well.  While this check is hardly large, to be honest, it is a delightful surprise in its symbolism: people are buying, and reading, Ben Behind His Voices.

It also means that more and more opportunities are opening up for me to speak to audiences in person, to meet and collaborate with readers and potential readers - families, providers, doctors, nurses, faith leaders, legislators, media, PAMIS (people affected by mental illness.

Someday!

And at least it's a start. Someday, I still hope to see the book on the USA Today or New York Times Best Seller List (hey, it can have universal appeal, right? Library Journal called it "A darn good read for memoir fans"...), for now the fact that it is getting into the hands that I suspect need it most is the best reward.

I got a Facebook message yesterday from a woman whose son had suddenly experienced a psychotic break - out of the blue.  She said, Someone sent me your book, and I sat and read it during the 5 hour wait in the hospital emergency room while waiting for a bed to be available for my son. Thank you for sharing your journey. We are struggling, but your book has helped me.

Now,  that means everything to me. That is why I wrote the book; that is the real reward. The fact that someone I have never met was helped by our story, and then passed it on to another "stranger"  who might need to feel less alone and have an idea of what to do next...well, it helps me feel that the messages in our story are getting a life of their own, like a child going out into the world.

So, if you know someone who needs "Ben", please share. You are the messenger. Thank you. With your help, the book will get into the hands of those who will benefit from its story and tips - and maybe, just maybe, get it to the bigger "Best Seller" lists. For then, I will know that the increased "Sales" means that more people will have been touched, enlightened, and perhaps helped by its messages.

Touching Lives : Grateful for the Chance

Mental Health and Disability Issues Affect Us All

Keynote: Educate. Collabeate. Advocate

Last month, I had the opportunity to speak about to the wonderful folks at PPAL, the Parent/Profession Advocacy League ("The Massachusetts Family Voice for Children's Mental Health") at their annual conference.  Our family story wasn't the only one presented; there were also two adults who had, as children, survived trauma and illness and abuse to come out stronger and smarter. Their stories inspired me, and I was challenges to honor their experiences by connecting our family's journey to theirs.

Courage is everywhere.

Support is essential. Sometimes the one right word, at the right time, can change a life.

My hope, always,  when I speak about our family's "chaos to hope" with Ben's schizophrenia (and also in writing the book)  is that some of our words will be those "right words" for someone else who may be listening to or reading them.

So happy, therefore, to have heard the following feedback from the fine folks at PPAL:

"96.3% of those who completed an evaluation stated they were, "very satisfied" with your information, preparation and understandability. In addition to the ratings, I thought you might like to read some of the written comments attendant to your presentation and I have listed them below.

o "excellent presentation"
o "she was very inspiring and incredible...have her come back again"
o "loved how she shared the journey of her son...realistic, well done"
o "empowering"
o "I loved her sense of humor"
o "outstanding speaker and presenter"
o "Very well spoken. I'm really happy to have heard her speak."
o "empowering/full of empathy"
o "awesome speaker" o "Very informative and inspirational."

Once again, please accept the sincere thanks from all of us at PPAL."

Thank you!! There is no speaking without a listener. My thanks for the opportunity to connect with all of you at PPAL and see the awesome work you do.

Mental Health Links of Hope and Understanding

There are so many working to increase awareness, reduce stigma,  advocate for proper treatment and services for those with mental illness - and their families. Sharing stories, spreading the word, creating events, producing documentaries, writing letters, speaking to legislators - we are everywhere.

Here are some terrific links I hope you will check out and support - and that they might be of some inspiration to you as well.

Check out this trailer for a documentary-in-progress called Voices. ("A documentary about people who live in the shadows of society") Gary Tsai, a resident psychiatrist in the Bay area, is one of its producers.

Why this film? (still in post-production, not yet released, but there is lots to see on its website)

"Some have been living on the streets for decades, others are now housed, but all are connected by their struggles, and successes, with mental illness. By shining a light on their experiences, we aspire to give them a voice and to humanize their experiences so that they are defined not by their disability or homelessness, but by their unique and compelling stories."

Here is another documentary, which has its first hometown screening tonight in Chapel Hill, NC.

view the trailer here

According to producer KevinCullen, “A Moment of Clarity” is an intimate documentary providing true insight into the world of bipolar disorder told through the life and art of emerging painter Isti Kaldor...Hospitalized during a manic period at UNC Hospital, Isti started to paint. Never having painted prior to his manic break, something in his mind was awoken, the results of which were evident in the dynamic expression of his artwork...(and Isti)has arrived at an unforeseen destination. A place where he can finally do what he dreamed of years ago. Touch peoples lives."

And here is a story of love and friendship:"

Schizophrenia Makes Finding Love Difficult, But Not Impossible"

Another wonderful source of "Links of Hope" come from the readers of Ben Behind His Voices. I am so grateful to you for reaching out to share your stories with me, comment on the book, and continue to spread the messages of understanding and possibility.

One such call led to a chance for me to see a newly-recovered side of Ben's empathy and progress. I blogged about it at healthyplace.com

Together we can truly make this particular change, one story (and, hopefully, solution) at a time.

Thank you for keeping the dialogue going.

Stop Stigma Now!: It May Save a Life

Last night I had the pleasure of being the keynote speaker for the Kennedy Center Inc Annual meeting. The theme was inspiring:

Create Hope, Celebrate Potential.

The Kennedy Center staff does so much to do just that, from educational programs to support services like job coaching, to residential programs and more, helping families when hopes and dreams have to be adjusted due to a disability diagnosis - in utero, at birth, because of an accident, or (as in our case) as a child develops.

Decorated books! for the centerpieces

We cry our tears; then, if we're lucky and well-guided, we wipe our eyes, pick up the pieces, educate ourselves, find a new community, get some support and new knowledge, and learn to understand our "new normal."  Then we adjust. And accept. And, eventually, appreciate the joys in this "new normal."

None of this happens overnight. It takes time (and the "SEARCH" elements I talk about - support, education, acceptance, resilience, communication, and hope/humor) to get to that new place.

And it takes time and patience.

But none of this - none of it - can happen without first addressing the problem of stigma. Especially where mental illness is concerned - because we can't always bring ourselves to see it, visually or emotionally.

Kenton Robinson of the Eastern Regional Mental Health Board wrote a beautiful, heartfelt piece about his experience with family stigma that almost had tragic results for one of his former 7th grade students:

he says:

Depression, bipolar disorder and schizophrenia are illnesses, just as diabetes or heart disease are illnesses, but they are still viewed by many as the victims' fault. That stigma makes people ashamed and afraid, and it prevents many from getting the treatment they need.

I responded:

Shame was part of our initial reaction until we learned better, through NAMI (I became a family-to-family educator and trainer) and through hearing stories of others. I wrote our book hoping it might save a family as ours was saved - and, possibly, save a life.

Thank you for a wonderful article!

CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

COME AND CELEBRATE! I am thrilled to be one of the speakers at this event, but the real stars are the young adults touched by mental illness, and their art and writings. After that, I will meet and speak with member of Families Anonymous in Connecticut. Sharing is healing.

VOICES ART EXHIBIT SEEKS TO RAISE AWARENESS AND CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

The National Alliance on Mental Illnesses of Connecticut (NAMI-CT) and Young Audiences of Connecticut/An Affiliate of VSA join hands to raise awareness and reduce the stigma associated with childhood onset mental illness through the art exhibit, Voices: The Art of Children, Adolescents and Young Adults Touched by Mental Illness. The exhibit features the work of more than 30 artists between the ages of 8-21, all of whom are either living with or are a family member of a young person living with a mental illness. The Voices exhibit will provide these courageous individuals a venue in which to express their feelings and a window into which others can gain access to their personal lived experience. Several of the youth will be present beside their artwork to share their story of how the illness has been a challenge, as well as an opportunity for personal growth and increased self-understanding.

The exhibit will take place from April 2-13th at the Legislative Office Building, 300 Capital Avenue in Hartford between the hours of 9 a.m.-5 p.m. Monday-Friday.

The Artist Reception will be held on Tuesday evening, April 3rd from 5-7 p.m. and will feature several speakers including Randye Kaye- actress and author of the book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope and Deborah Mendoza and Jana Pietrzyk- two Voices artists and inspiring advocates.

For additional information on either the Voices exhibit or reception, please contact Ann Nelson, NAMI-CT, at either 203-927-1541 or familyresearch@namict.org.

Mental Health, Community and Potential:The Clubhouse Model

Last week NAMI-CT's Fairfield Affiliate hosted an informative and inspiring Legislative Social - over 100 in attendance, including about a dozen state legislators, all there to hear about programs and services that help those affected by mental illness live fulfilling, purposeful, hopeful lives. I wrote about it here as well, on my Mental Illness in the Family blog.

My point there, as expressed in my comments at the meeting: don't let the success of these programs and the amazing young adults participating in them lull you into a false sense of security that continued funding is not necessary. It is. Oh, it is. In this climate of budget cuts for the look of the bottom line, never forget that treated mental illness is always way less expensive than the cost - financial and emotional - of untreated mental illness. Keep funding what works!

And here is something that works: the International Clubhouse model. Fountain House in NYC, Laurel House in Stamford CT, Shore Clubhouse in NJ, many others, and here an example from Bridge House in Bridgeport CT. This video was written, produced and voiced by the young adult members at Bridge House.

Possibility, Respect, Understanding. Here is the video. Enjoy.

Crisis Intervention Team Training Makes a Huge Difference

Officer Newkirchen, Deputy Chief Lyddy, Captain Smith

Early this month I attended the annual speaker meeting of NAMI Fairfield, a very strong affiliate in Connecticut.  Our guests? Members of the local police force, one of its eight officers trained so far (as of the end of this month) for the CIT (Crisis Intervention Team).

Here a few things I learned:

1. All Police Academy graduates have had some training in Crisis Intervention. The CIT-trained officers, however, are have advanced knowledge and skills. Kind of like getting the heart specialist instead of the general practice doctor.

2. Police Officers really do care, and want to prevent crime rather than have to make arrests after the fact.

3. Police force hires only about 1% of those who apply. Wow.

4. Those with mental/emotional needs 7 times more likely to encounter law enforcement

5. CIT Actions now include follow-up with the families after an incident to gather key info and make sure they know about resources. Many are unaware of support groups and other places for info/help.

6. Families can pre-register information for the CAD (Computer Aided Database) in case of future incidents.

7. "No one likes to make arrests."

8. CIT Training helps us all. And these officers deserve our thanks. I know, personally, that without the empathy and understanding police officers showed when Ben was confused and symptomatic, his current life might be very different. Officers in the know took him to the hospital, took the time to call me for information, and handled Ben with respect and care. Thank you.

9. Any dollars spent on CIT Training saves lots of taxpayer dollars later. Untreated mental illness has a much higher cost, financially and emotionally, than treated mental illness. Ask my son, who is earning a salary instead of costing the state money for a long-term stay in a nursing home. Prevention works, and saves lives.