Sharing the Message: Interviews, Reactions, Reviews

I had the pleasure of being interviewed on WBAI  in New York by Armand DiMele, for his popular broadcast "The Positive Mind" .  The show aired on August 23, 2011, but you can listen to the archived show here:

If you'd like to read more about Ben Behind His Voices, I've had the pleasure of being interviewed by several writers recently. Here are a few links:

Review and Interview

Oakland County Moms Interview,

Schizophrenia - Parenting Mental Disorder

Touching lives, opening eyes...hopes for the book

About four weeks until the actual book release, and yet the most amazing gifts have been coming my way in the form of e-mails, on-line reviews, and blog comments from those who have already read it, via pre-order.  These reactions warm my heart, and bring tears to my eyes - because they resonate so much with the reasons I felt the story had to be told.

Meanwhile, my Ben has actually asked to hear a bit from the book. First time ever. I think he is starting to accept that it can be of help to others. The road to this acceptance is his journey to take, at his speed. Locally, some people have slipped on occasion and called him "Ben" - which is not his real name - and he laughed about it. Whew. Trying to honor his privacy, and also keep the door open. He did give me permission to write this memoir, as long as it was clearly from my perspective (which it is) - but I'm still releived to see that he still seems supportive of it, even now that it is real: a book you can hold in your hands.

Among the comments:

"It truly is extraordinary. Your writing style is fresh, captivating and riveting. Your vulnerability is inspiring and wonderfully raw. As someone who has been immersed professionally and personally in the world of mental illness, thank you."

"I find your book a miracle of persistence, strength and love. It is a great book, in particular, I think, to give a view of what parents go through."

"I just finished reading this book for a review.... I just wanted to say that I am both incredibly overwhelmed and in awe of your strength and your family's. I fell in love with Ben through the story; felt the sorrow, the fear, the pain, the anger... I am so blessedly thankful I get to have a chance to share this story with all of our readers."

" I couldn't put your book down because I could relate to your stories and all the stages of acceptance that you went through and are continuing to go through."

Thanks to all for taking the time to write, and comment.

Another theme is developing as well, as I read your comments -- many who have been educated in the fields of psychology are telling me that it has really opened their eyes to early symptoms of mental illness - and that (shock, to me!) there was no requirement to study these signs as part of their curriculim.  I have been told by fellow author Susan Inman (After Her Brain Broke) that this is often true in Canada -but I always assumed that here in the U.S. our providers were adequately educated about mental illness. 

If you are a therapist, school psychologist, social worker, etc - were you taught about these illnesses?  Were you educated as to early symptoms to faciliate early detection, and to help families participate in treatment? 

If you are a teacher, professor or college administrator, are courses in the major mental illnesses part of the curriculum in these fields? Why or why not? 

Just asking.

Laurel House announces "Ben Behind His Voices"Book Launch Event!

Laurel House

Details have just been announced for the book launch event for "Ben" - and I couldn't be more proud to be associated with Laurel House, who will be the event partner.

Want an invite?

Here are the details:  Book Launch with a cocktail reception and reading, September 20, 2011

Laurel House stands as an amazing example of what can happen when those diagnosed with mental illness receive the respect, support, and opportunities they need. Please take a moment to visit their website to see what they do, and read some amazing stories.

I spent a wonderful afternoon last visiting touring Laurel House, and was so inspired by what I saw. This quote from their materials sums up what they do - and what is, still, so sorely needed for others who have not yet found a place like Laurel House.

"Laurel House restores hope by giving people a chance to regain what they have lost: employment, education, housing, companionship, health, ties to their community. Self-respect."

Laurel House is based on the "Clubhouse Model" that is, thankfully, a growing field - but still greatly in need of support.  My hope is that Ben Behind His Voices will help spread the message that recovery is possible, and that the costs of such support for recovery far outweigh the much more expensive cost (financially and emotionally) of untreated mental illness.  (over $100 billlion yearly in the US alone).

Come and celebrate!

Book News! Audiobook Release, Book Launch

BBHV audiobook CD - or will be available via download as well

Thrilled to announce that Spoken Word, Inc - a wonderful young audiobook company in California - has been selected as the publisher, producer and distributor of the audiobook version of Ben Behind His Voices. You can find out more about them at Spoken Word Inc - and another recent release from them will be the timely Wikileaks And The Age Of Transparency, by Micah Sifry.

I'm in the process of recording the narration for them. Previews soon! As a voice talent, I blog about the process on my voiceover blog. We're in full speed mode, since the audiobook is slated for release the same day as the book's official launch: September 15, 2011. Look for the audiobook soon on Amazon and other outlets - but in the meantime the print version is shipping now from Amazon - and I just noticed they are promoting a special price right now on Amazon for BBHV.

Now - the book launch party!  Laurel House in Stamford CT - an amazing resource in that area for those with mental illness - is hosting an awareness raiser on September 20, 2011 (Tuesday evening) and I will be the featured speaker. I'll read from my book, sign copies, and there will be lots of good food, drinks, and info about Laurel House at a great location in Norwalk CT. Want an invite? Contact me at randye@benbehindhisvoices.com, or visit Laurel House website .

Another fantastic, smart and caring organization - Melissa's Project and Guardian Ad Litem Services will hold their gala event on October 6, 2011. I'll be there - and so will the fabulous Jocelyn Maminta from WTNH-Channel 8.

After that?  Fairfield Library and the Fairfield NAMI book club will host an author event on November 17, 2011.  There is more to come, thanks to you and your interest in Ben Behind His Voices.

And thanks for your caring about Ben, as always. Happy to tell you he's thriving, one week out of the hospital. Back at work, starting fall college classes soon. The goal will be to continue this success - one challenge at a time. One day, one phone call, one plan at a time.

A Good Day: Ben Comes Back

Ben is on the phone in the other room right now, talking to his friends and explaining that he hasn't been able to call because  "I didn't take my meds and so I was in the hospital for six weeks." Hey! That's way more open than he was with the psychiatrist this afternoon. Very interesting. But - he sounds alive. Happy. And I can breathe once again, while my to-do list grows with ideas to try and prevent this last relapse from happening again.

But today - we celebrate. Sure, "what-ifs" can always crowd out the joy, but short of the actions we can take today, and plan for later, there is nothing left but the choice to be grateful. That's where we are right now, and boy does it feel good. I have never regretted letting happiness win, not once. Whatever else happens - or could happen - we are, and will be, able to handle it somehow. (That's one of my favorite "momentary mantras"...I have seven of them that will form the heart of my next book, Happier Made Simple)

And there's more! This is a really cool day.

the first copies! Photographer: Ben himself

1. A package arrived from Rowman and Littlefield: my six "author copies" of my book! And - amazingly - the first one to see these copies was Ben. He's the one who took the picture you see here.

2. Author appearances are building. The latest: a collaboration with the wonderful, devoted, brilliant folks over at Laurel House in Stamford, CT. Watch for more details, but it looks like the book launch party will also be an awareness raiser for the issues we all care about (and solutions, such as the ones exhibited at Laurel House). Save the evening of September 22nd and e-mail me if you want an invite!

3. Thrilled to announce a new partner for Ben Behind His Voices, this time for the audiobook version. I start work next week on the narration for Spoken Word Inc., and it will be available in both CD and downloadable versions. So excited! - This company is dedicated, passionate, thoroughly professional, and as excited about the book as I am. Watch for more on this, but you can always go to facebook and "like" their page at SpokenWordInc, and/or the Ben Behind His Voices, audiobook page.

audiobook version of "ben"

4. Ben's employer - the best ever - is welcoming him back to work after this six-week absence. Before this episode, they had no idea Ben has schizophrenia. Now they know. And they are still giving him back his job - with a willingness to adjust his hours to whatever the Doctor suggests. Now that's another miracle. Ben starts back to work tomorrow.

And, while you're on facebook, the published version of "Ben" has both a group and a page. Thanks!

Yes, a very good day. My family feels complete again. I'll take every day of that I can get. And now - to figure out the next best steps. Ben's stay with us is only a "visit" so we can get the transitional pieces into place.

Families on the Treatment Team- and book reviews

First two official reviews for Ben Behind His Voices: exciting! Every positive review, from official sources like these and from readers, will help spread the message of respect, empathy, truth and the need for supportive services for those with mental illness and the people who love them.

From Kirkus Reviews and Library Journal:

An illuminating portrait of a parent coping with the guilt and heartbreak that come from feeling like one can’t “fix” one’s child. VERDICT: Recommended for anyone who is involved with teens or those with mental disorders, and a darn good read for memoir fans.-Library Journal

A mother wrestles with the advent of her son’s schizophrenia and its long, painfulunfolding….The author….is eminently helpful, particularly in the matter of self-medication,which so many of the mentally ill prefer to taking the medications that have been prescribed for them….Heartfelt and surely of help to those new to living with mentally illloved ones of their own.-Kirkus review, June 15 2011

Thank you so much for "liking" BBHV's facebook page, following this blog, calling your libraries to ask them to order the book, and especially now for this: your comments of support re Ben's recent relapse, and your agreements in outrage that transitional services are greatly in need of improvement. Ben is currently, thankfully, still safe in the hospital while I scramble to try and figure out what options there are for after his release.  This I know: if proper plans are not made, he'll slip through the cracks again and will re-relapse. There needs to be the "Person-Centered Treatment" he was receiving in his group home - and that's in opposition to the current team's assessment that Ben doesn't need that type of supervision anymore.

NAMI meets in Chicago

The theme of this year's NAMI National Convention was "Together We're Better." Yes, indeed. I learned so much last week, from so many who are advocating for our loved ones, and will do my best to share with you.

Here's one: Treatment Advocacy Center. Their goal? "Eliminating Barriers to the Treatment of Mental Illness." Check them out - they have a great video there as well as tons of resources.  I also met Canadian Susan Inman, who wrote After Her Brain Broke, Helping My Daughter Recover Her Sanity. I recommend her book and articles as well. Now, with Ben hopefully back on the road to medication adherence, it's only because of my insistence - and my official role as conservator - that information is shared with me as to his treatment plan. While I do realize that Ben's recovery is his own journey, I'm not about to let him be totally in charge at this point if I can help it. There is always that balance between stepping in a letting go. In one article called "Help Us Help Our Children" , Inman says,

"This notion of the overly involved mother is especially persistent and pernicious. Common sense tells women that their currently ill children need their assistance, while mental health professionals are too often quick to label their efforts as intrusive and pathological."

Yes, Together we are Better. Families should be included in treatment info and plans whenever possible. Let's work together for "Person-Centered Treatment" that respects the individual but does not close its eyes to the realities of how brain disorders can affect judgment.

In the Dark about Mental Illness? Great Resource

We have, at last, the official publication date for Ben Behind His Voices: September 15, 2011. It's on Amazon right now for a peek, and my thanks to those of you who've told me you're eagerly awaiting the chance to read more. My hope is that the book will help others by sharing our story, both the trials we experienced as and the hope we eventually found. Meanwhile, I hope this blog can continue the work of sharing useful information and resources while providing updates. So - in that spirit:

Just learned of a great entry on Psychology Degree.com -25 Q&A Sites on Mental Illness

It's chock full of amazing links. Thanks to Patricia Duggan for sharing it with me.

Also, healthyplace.com (where I also blog about Mental Illness in the Family) is a terrific resource for many health issues, with a fine section on mental health.

There's plenty of guessing where mental illness is concerned, I know. All I have to do is look at Ben's current relapse to know that even some providers, unfortunately, do their share of guessing.  In some cases, it's because research results are so contradictory, or budget cuts and legal issues create confusion.  In other case, as you know from this blog, much info is available just by taking the time to listen to the family and/or prior caseworkers.

Joyce Burland Ph D

When Dr. Joyce Burland created NAMI's Family-to-Family course, she knew that families craved good information, and that by becoming educated they could be better partners in their loved ones' recovery, and  more able to take care of themselves as well.

One of the elements of recovery for people like my son Ben is a family educated in the facts of mental illness.  Believe me, it can make all the difference. Not a cure (sorry, I wish I had the magic), but by staying informed we can all partner better for the best possible income.  So I'm happy to share the above resources with you.  I hope it helps, even a little.

Thanks to all of you for your comments, insights and support re Ben's current relapse.  Now that we''ve absorbed the change a bit, and done everything constructive we can possible to with our anger at the mistakes that could have been avoided, we are taking this new chapter one step at a time.  Ben is safe for now, his hospital team is far superior to the case management team who screwed up (sorry but it's true), and we are back to channeling hope and faith as much as possible while staying alert to anything, any action, that might help bring Ben back to the life he's worked so hard to recreate. Right now it's all about the meds, and his "right" to refuse the only one that really works.  Grrr. Will keep you posted. Thanks again.

Family Matters in Mental Illness and Recovery: Sharing

Since this is a new home for the blog I'd previously shared as "No Casseroles for Schizophrenia" on blogspot, Technorati has asked for my verification, so here it is: 295NHGGCAUTX

Meanwhile, thanks again to you: for following, sharing, and caring.  I hope to continue the dialogue for all of us - one in four families - affected by a major mental illness in one of our own: child, spouse, sibling or parent.

Other excellent forums exist as well, such as:

• healthyplace.com (where I also blog about Mental Illness in the Family)

• NAMI

• NAMI Family-to-Family (its effectiveness documented here in this Psychiatric Services article)

• NAMI groups on twitter, facebook, linkedin

• BringChange2Mind

and many more.

I'll try to keep you posted right here, and hope you'll do the same. As always, please feel free to follow, subscribe, comment, tweet- and tell others that we're here, and they are not alone.

If you are going to the NAMI National Conference, stop by and see me on Friday July 8  (Poster Presentation around noon) to say hi - and  for a free bookmark with book info and alsohelpful tips on family matters!  

Parenting with Challenges: Sense of Humor Required?

interview, "Family w/ Schizophrenia finds Hope

With the official launch of Ben Behind His Voices less then three months away (OK, by one day, but still...), interest is growing and I've been lucky enough to appear on a few talk show already.  One interview, longer and more serious in nature, is on the HealthyPlace.com website.

A few days prior to this web interview, I appeared on Jaki's Buzz with Wendy McGee, talking about balancing motherhood with a career in broadcasting,acting, and writing.  This is a fun interview with great reaction so far, but one viewer did comment that he thought the subject of  "parenting when schizophrenia hits" was treated too lightly here. 

Seriously? You know, when someone in your family has a mental illness, it does suck the sense of humor right out of you at first. You're too busy reacting, and coping, and trying to fix things. But you know what? After a while, you've got to find yourself again.Sure, you've got to take care of what your loved  one needs, as best you can. But after awhile you realize there's only so much you can do - at least for the time being. And then you've just got to take care of yourself - and, yeah, there's the rest of your family and others in your world who need you to be yourself too.

taping Jaki's Buzz

While Ben was developing his illness, I was a morning radio personality. Make 'em laugh. And you know what? Some mornings - coming in to work fresh from an all-nighter at the hospital Emergency Department admitting Ben for yet another stay - it was no small feat to find the sense of humor I needed to be entertaining on the air. But each and every time I had to do this, it helped me. It helped me to remember that there are parts of life that go on, that are enjoyable, even when heartache lurks around the corner. It reminded me that I was more than just the mother of a son who had just had a psychotic break.

So bring the laughter on.  Believe me, when you need to get serious, you will. You need all sides of you to be the parent, wife, sibling, child, friend or professional you need to be. Take care of yourself too. Sometimes it's all you can do.

Supported Housing: One Giant Leap for Ben

I'd always been under the impression that when Ben was ready to leave his group home, he'd be gradually weaned off the 24-hour staffing to, perhaps, 16 or 12 hours of supervision. But no. Ben's recent accomplishments, notably lasting six whole weeks at his new job, have forced the issue of getting him "graduated" from supervised housing to the next step. Evidently, there is no middle ground in our state. The next step is living alone. Yes, he qualifies for a med nurse to show up twice a day and carry out doctor's orders for supervision of meds.  Yes, there is help "if he needs it" in the office a few blocks away.  But still. While I share and applaud Ben's accomplishments to qualify for this next step, I am also as concerned about this change as I am happy for him.

Tomorrow, he moves. First and last month's rent? He only has part of it.  Most of his benefits were withdrawn almost as soon as he received that first paycheck.  So guess who has to make up the difference? What do people do who don't have parents to help them?

Furniture? He needs a bed, a table and chairs, the basics of life.  So much need, so soon, with nothing in the bank to pay for it now. What if he had no family? What do others do? I think we'll be making daily visits to Goodwill for awhile. Our family has unlimited love to give, but definitely not unlimited funds. Far from it.

Ah, the thrill of the challenge. But finding furniture, and stocking Ben's fridge, will be the easier part. How do I stay away from the fear: What if it's too much for him? What if, after seven careful years of building his life back up, this is too much independence, too soon?

What if Ben crashes? I try not to think this way, but it sneaks into my head when I'm not looking.

After seven years with the safety of all-day staffing, Ben will be on his own in so many ways. He is thrilled beyond belief. I am happy for him.  I am, also, scared. I want to believe that his recent accomplishments - doing so well in part-time college classes, landing and keeping this new job, racking up years now of sobriety - are proof that he is really growing up at last, chipping away at the years he lost when his illness was in the forefront.  I will behave as if I have complete faith in his ability to thrive in this new phase.  And maybe - just maybe - it will all work out wonderfully.

Ben has certainly earned this chance to prove himself. There is little I can do now except be happy for him, support his independence, and - between you and me - keep my eyes wide open for signs of relapse, and my arms and heart wide open to love and congratulate him.

Thoughts?

"Hope, Respect and Dignity" : One CT Doctor Writes about Mental Illness

Bridge House, CT

In a recent article in the Stamford Times, Dr. Michael Basso writes about the need for those non-medical elements in treatment for mental illness. Things like Hope. Respect. Dignity. And, yes, even Humor.

He spoke at a mental health day center, where many in the group were homeless. He found that the above elements created an interactive, respectful, fun session. Here's what he had to say about humor:

"I cracked as many jokes as I could before and during the talk and got the patients engaged in having fun. They were also encouraged to make relevant jokes -- perhaps the most important innovation of all. The laughter put them further at ease and the jokes engaged them in ways that helped return control back to them -- called having an internal locus of control"

Lionel Ketchian, Happiness Club

This reminds me of the Happiness Club, which began in Connecticut but now has spread internationally. Lionel Ketchian, its founder, runs a meeting at Bridge House ("a Clubhouse which is modeled on the Fountain House model of psychiatric rehabilitation. The men and women who attend assist with the running of the program, which helps to restore their sense of purpose, dignity and self worth. Members also work at part time jobs, with staff providing intensive supports") 

Lionel says he always gets much more than he gives.

I've had the privilege of participating in one of the Bridge House Happiness Club meetings. Truly amazing.

Hope. Respect. Dignity. Humor. Yes, please

Spreading Hope: Speaking and Submitting 28UFDXR7Y75H

My potential book publicist just described Ben Behind His Voices, and its message within, as "a beacon of hope" for those who are going through any similar challenge with a disability in a loved one. I hope so. Oh, do I hope so. That is my dream for this memoir, and for this blog: to spread hope, to reduce stigma, to open dialogues, to increase understanding and respect for those with mental illness and for their families.

I've submitted this blog to Technorati so that others can find it. To do that, I must include the code here: 28UFDXR7Y75H.  (It's in the title too - just in case)

Meanwhile, on June 9th, I will be the keynote speaker for Fellowship Place in New Haven, Connecticut.  Fellowship Place is a shining example of how important community is to those in the mental illness recovery process. NAMI reminds us that essentials for recovery include, among other elements:

• a safe and stable environment

• an educated, supportive family

• something to get involved in: work, community, advocacy

• sustaining hope and a vision of what is possible.

My Ben would not be where he is without his community - his job coach, caseworkers, house supervisors, doctors, family a friends. It takes a mental health village.  Kudos to all who serving as a beacon of hope, and to all who are absorbing it all so they too may someday advocate as well.

Fellowship Place Community

NAMI Family-To-Family: Happy 20th Anniversary

My son Ben is two weeks into a job. An actual job, with paychecks and everything. And by “everything”, I mean a reduction in benefits which almost wipes out the money he’s earning…but that’s another story. The main thing is that Ben is earning this money, and that feels completely different to him. The change in his self-esteem is astonishing. He has something to say when people ask him, “So what do you do?”

As the publication date of Ben Behind His Voices approaches,  I find myself thrilled that its launch will coincide with the 20^th Anniversary of NAMI’s Family-to-Family Program, because that is the course that saved my family by teaching me what I needed to know to cope with my son’s mental illness. NAMI helped me, and then I had the tools and the support to help my family – including, eventually, my son.

In January of 2002, I walked into my first F2F meeting – and I walked out completely changed. Although NAMI support groups had thrown me my first lifeline out of the hellish confusion of my son’s symptoms, I needed more. F2F was different from the support meetings in that it was a structured, once-a-week, course that was more educational in nature. In twelve weeks, I could learn about mental illness and its effect on the entire family, including the person who suffered from the illness.  This was taught by other family members who were trained by NAMI to implement the course. And – it was free.  All that was required was the commitment to attend all twelve classes, one evening a week, for 2 ½ hours each class.

What did I get?

Clarity.

Clarity can bring many other things along with it: Understanding. Mourning. Hope. Anger. Grief. Bonding.

This, I think, was a clearing of my future path to acceptance and action.  It was a start, and a glimpse.  Without this knowledge, I might very well still be fumbling blindfolded through the woods. Sometimes I still am – but since F2F, I always have an idea how to find the path once again.

The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered.  And now, the program has grown and keeps growing. 
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy.  In fact, it was never easy.  Most of that clarity came at a cost. Understanding teamed up with guilt.  Information came along with fear.  Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.

Family-to-Family’s greatest gift was this: I stopped hating my son.  I learned new ways to cope, new ways to communicate with Ben. The course took us from painful realization to empathy for our relative’s experience and the hope that our families could someday absorb these new truths and progress to acceptance and advocacy.  But the only way to the final stages of emotional response was through the pain.  No shortcuts to the stage of acceptance.

There was so much I had learned. And still so much I didn’t know.

But now, armed with all this new and overwhelming information, I felt I could at least talk to the professionals on a respectable level. It empowered me. The class members  empowered each other.

In the past, I had been trying not to react.  Now, at least, I had some tools as to how to react, and some empathy for what life might be like for Ben.

I was going to need it all.  Many crises lay ahead in the next few years. Without NAMI, I don’t know how we would have survived it. Even with NAMI, I don’t know how we did it.

Happy birthday, Family-to-Family.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at a local tourist attraction. Twenty people were hired, and one of them is my son Ben.  Why is this such a big deal? Because Ben hasn't been hired for a job in over eight years, since before his first hospitalization for schizophrenia. I am so overwhelmed with surprise and pride at this news that I realize I hadn't even dared to dream that this could happen yet for Ben.  In recent years, he'd begun to succeed in college part-time (the fact that he is starting to know what he can realistically handle is a huge step in itself.)

So much of Ben's growth in recovery has happened in these small steps that this huge leap into the work world scares me a little - yet I know (and keep reminding myself) that this is Ben's journey.  My questions - will this be too much stress for him? will he be able to wake himself up every morning when he has to get to work by 8:30? will his schoolwork suffer? - are ones I must keep to myself, and trust my son and his team of caseworkers to handle the answers without me.

But - over-riding all this is the wonderful pride I see in my son's eyes.  The value of having an actual job, of feeling useful, of being wanted for what you can offer: yes, indeed, priceless.  Ben, who while in the throes of the onset of his symptoms wrote that work was a "government plot designed to enslave us," has now changed his mind.  This week he wrote this:

If I were to give one piece of advice to the reader of this 'message', I would say that in order to get to where you want to be in life, what you have to do is walk the path.  Now, I understand that this probably sounds easier said than done, and - I won’t lie- it is. I now have goals for my life, and I must be willing to actually perform the steps that the goals require. One way to make this easier is to learn from one’s past, and embrace the lessons which will make walking the path easier. - Ben, 2011

A huge question, though, is one that no one on his team seems to be able to answer correctly - what, exactly, will be the effect of this minimum-wage job on Ben's benefits?His job coach says he is an "employment specialist", not a "benefits specialist," so he doesn't know. Ben's group home staff members ask his agency caseworkers, who ask their supervisors.  Wrong answers abound.Finally, I find some answers. Tips to help you, if you are in similar circumstances:

• There is a "benefits specialist" somewhere in the system.  Hunt and find.

• Social Security has a "Ticket to Work" program designed to help those receiving disability benefits as they take steps to self-sufficiency. Go to www.socialsecurity.gov/work for details

• There are different rules for SSDI, SSI, and any additional benefits you might get on a state level.

Ben is walking his path. Today. And someone has finally noticed - enough to hire him. I, as always, have my fingers crossed and my gratitude high. Having a job to go to is so the most amazing boost for Ben's dignity. Is it that way for you, or your relative with mental illness?

Ticket to Work: The Road to Self-Sufficiency, fingers crossed.

Ben has a chance at a job. A real job. Minimum wage, yes, but for him to make it to a second interview, and then to a possible job offer for the summer...well, the tears I feel remind me that I hadn't really even dared to dream this for him.  Ben hasn't had a job in eight years, since he was twenty years old.

He is so excited - it's the validation, the possibility he may be able to earn money, be useful, have something to say about his life other than "I live with roommates and do volunteer work" and - lately - "I go to school part-time", a miracle in itself .  He is also facing, suddenly, questions like:

• What will come up in a background check? Will the employer know about my hospitalizations and diagnosis?
• Will I lose my SSDI? SSI? State help? Medicare? Medicaid?
• What is a "Ticket to Work", and do I have one?
• Will I lose respect and the chance at this job if I reveal my diagnosis?

Practically, I was able to find answers by calling Ticket to Work, and by visiting the Social Security Work Website
The emotional questions are the ones that are more difficult to face
- but Ben is asking those questions, and setting his limits as to how much he wants to, or has to, reveal.  His dignity is so at stake; still, I'm amazed and proud at what he's doing: calling his job coach himself, contacting other so-called "experts", formulating exact answers to the questions that may come up.  He has more than risen to this occasion.  Again, the happy tears.

And the fears, which I am trying to ignore.

Will this be too much for Ben? Will he be able to get to work at 8:30 AM each day? Will the no-smoking rule cause problems for him, even though he says it is not an issue?  Will the stress cause a relapse? Shouldn't he take a lesser, part-time position?

But these are Ben's decisions, not mine,  All I can do is help with the research and share the information with him and his providers. Then let go. And have faith: faith that he can handle 32 hours of work each week, and still keep up with 6 college credits. And not break under the stress.

Nothing would make me - and Ben - happier.

Author Reflections: "Ben Behind His Voices" launch date set

It's real! The official publication date for Ben Behind His Voices is September 16, 2011.  When you search on Amazon or Barnes & Noble, there is a listing.  As a first-time author, I have to admit that this is even more exciting than my first kiss. Yep. At least I think so - the first kiss was so unexpected (another story for another time), while this listing is the culmination of  years of writing, rewriting, query letters, bouncing back, trying again, and finding and reconfirming my own faith in the book's value to others.

Yet this is nothing - nothing - compared to the challenges Ben himself has faced in the same period of time.
In a way, the timing of Ben's publication couldn't be better, for when I first sat down to write our story Ben was just a few months into recovery.  Now, he has logged over five years (knock wood) hospital-free, and we've been able to see how recovery can progress when psychosis is avoided for longer periods of time.  So, because of this long journey to publication, I hope that our memoir will offer even more information and hope to its readers, as I've updated Ben's progress frequently as the drafts piled up.

Here is the description from the listing (image and "search inside" features will come later, but you can pre-order) - it contains my hopes for the book's effect: to increase understanding and respect for those with mental illness, and for their families; and thereby reduce stigma.

"Ben Behind His Voices is the gripping story of one family's challenging experience when their firstborn is gradually struck down by schizophrenia - and how they learned to love and support him throughout his eventual steps to recovery. This page-turning narrative will inspire and educate any family going through hard times with the mental illness of a loved one. It also provides valuable insight for others who want to understand how families are affected when mental illness strikes."

For any families in the same boat: there are guidelines of info and resources at the end of most chapters. I hope you will fall in love with my son Ben before you get to the part where his illness takes hold. He is there, behind his voices, all throughout the book - and he still is. As is your loved one. Hard to see sometimes, I know. but love helps. So much.

Legislative Social: Where were the lawmakers?

Here in Connecticut, it's fix-the-state-budget time, and our local NAMI affiliate arranged an event last night that was powerful, organized, and well-attended - except for the state legislators who'd promised to appear. The speakers were inspiring; they had progressed from homeless to productive, from hospital patient to independent citizen, from dropout to Masters Candidate -all with the help of (a)integrated treatment and (b) community. If services are cut for these speakers, they will lose all they have gained. I wish Ben had been there with me to hear their stories; I hope that, someday, he might be willing to share his.

If services are cut, the true cost will be great.
How much more will it cost the state in the future - and, more importantly, how much will be lost in the lives of these speakers and others like them - if we take away the support that helps them now? Without access to a supportive community and proper treatment - including essential medication - my son, all those inspirational speakers and countless other citizens like them, are likely to wind up in hospitals, homeless shelters, the streets, or in jail. That would, indeed, be pound-foolish - and devastating to the lives of courageous individuals who have already accomplished so much.

Where were our state reps? How can they hear the message? It falls to us to speak up for ourselves, for our loved ones. But no one can tell the story the way it was told last night. And too many were absent. Kudos to the 2 state reps who did find the time. Thank you.

Another family's schizophrenia story

Before we found our publisher for Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope, my agent and I received several quite lovely rejection letters, stating how much they were moved by the story and by the writing - but that they feared it "just wouldn't sell" because of the subject matter.

Now, coming out very soon, another family's story, called Henry's Demons. This is by Patrick Cockburn, his wife, and his son - a UK family, each telling their part of the experience.
Reviewed by the NYTimes, moving up high on Amazon. I've just ordered it, and hope to connect with the family someday. Yes, this subject does sell - and it needs to be heard.

Is this "competition" for my book? No! It is a partnership. The more families that come forward to tell their story, the more we can all work together to increase understanding, reduce stigma, and increase respect. Bravo!

Creative writing, then and now

Ben is taking two classes this semester: Directing 101 in the Theatre Department, and Creative Writing. The directing class requires a lot of him, things that his illness have compromised: insight into one's own emotions and the feelings of others, social awareness, stillness, complete connection. Do I tell the professor that Ben has this illness, so she is aware she needs to grade him in accordance with his disability?

And...creative writing. Ben's writing used to look like this:

- and that was before it began to look even more scattered and illegible. Now he is writing haikus, and keeping up with assignments. 200 pages of reading assigned between classes, I fear, may cause him too much stress; yet, it is his journey to complete. He is getting assignments in on time, so far - even, in one case, a day early. That requires a connection of cause and effect I haven't seen in years. Still, I want to make sure he gets a fair shake...do I write to the professor?

Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.
She writes this, in The Guardian:
"So the main reason I wanted to write was to say sorry. I did the best I could with you and for you at the time, but it wasn't good enough and I ultimately failed to protect you and keep you safe. I wish I could go back in time and do things differently."

Maybe with support, and without the stigma, her son's life could have been saved. Here is the link to the letter, which breaks my heart:

http://www.guardian.co.uk/lifeandstyle/2011/feb/05/letter-to-my-late-son-who-had-schizophrenia

Ben Behind His Voices this summer!

The cover design has been chosen at last, and it makes the upcoming publication finally seem real. The exact date of publication is still tbd, but it should be in bookstores in August 2011, and available for pre-order at the end of June or by July. There are more updates available by either joining the facebook group "Ben Behind His Voices, the book", or by joining my e-mail list using the link on the home page at https://randyekaye.com/ - just specify the "Ben" list when you get to your choices.

Here are some advance comments, though!

Poignant, stark, and the energy of the scenes are set up really well. This work has screenplay written all over it. The dialogue is wonderful and the pace of the story moves briskly.
– Nancy DeRosa, author of A Penny’s Worth, and There’s No Place Like Home

What I find most compelling about Ben Behind His Voices is the author's honesty as a mother about her true feelings. She connects with her readers because she allows herself to be human and vulnerable and share both her struggles and triumphs.
– Amy J. Barry is author of A Child’s Grief Journey and writes an award-winning parenting column, A Parent's Eye View.

Should be required reading for all psychology professionals and students, as well as anyone who loves or cares for someone suffering with schizophrenia. Incredibly well-written, profoundly honest and, perhaps, most importantly, Randye Kaye offers help and hope to thousands of families needing to hear her story. I sat holding my breath as I turned each page. The author is not only a survivor and an incredibly loving mother, she is - by any standards - a gifted writer.
– Linda Appleman Shapiro, psychotherapist/oral historian/author of Four Rooms Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness.