Mental Health Awareness Month, for Caregivers too

Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year...but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!

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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.

Loving through mental illness: "It's like he disappears..."

Sometimes we say things, and they stick.  Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you'd said it? That's how interviews are sometimes.

Two years after Ben Behind His Voices was published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book's journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey - or where they hope to be. Others simply like its message of resilience, strength, and hope - regardless of the cause of the challenge.

Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.

Here is Lisa Capobianco's story about it in the Plainville Observer, including the quotes I'd forgotten I'd said - to which I added my own italics...

Author to share story of coping with son’s mental illness

November 8, 2013

By LISA CAPOBIANCO
STAFF WRITER
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.“
This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him", said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”

From the time, Ben developed symptoms of gradual onset schizophrenia to the time he received treatment, Kaye said she struggled to support her family as a single parent with several jobs. When she quit her job as a radio station host, Kaye had time to reflect on her family’s experience, and decided to write an account of Ben’s battle with schizophrenia in her own book called, “Behind Ben’s Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope.” In her novel, Kaye said she provides a better understanding of mental illness and the people who struggle with it.Kaye will share her story with residents at Plainville Public Library, 56 East Main St., on Tuesday, Nov. 12, at 7 p.m., reading passages and answering questions. Through her story, Kaye said she hopes readers will gain a greater understanding of mental illness, and how to gain acceptance, resilience, and strength.Kaye also said she hopes not only to spread awareness, but also to break the silence among other families who may be struggling with a mental illness so they may become a sense of comfort for each other.“We need to understand that we are not alone—there is hope,” Kaye said.Kaye said her son, now 31 years of age, has developed stability in his life. Although he continues to take medication, Ben now takes college courses and holds a part-time job while starting a social life.“Parenting comes with adjusting your hopes and dreams,” Kaye said. “If your child develops a mental illness, you have to switch gears and still see what is good.”Kaye’s book will be available for purchase during the event, and is also available online at www.benbehindhisvoices.com.

Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

Dear Reader:

earlier drafts…

The first draft of Ben Behind His Voices was a full 100 pages longer than the draft that eventually got published.  Once in a while, I plan to post some of the "lost" passages that wound up on the writer's version of the cutting room floor.

This chapter describes a trip that I took with Ben and Ali, right after Ben returned from his period out West which began with great promise (and success at becoming pot-free), morphed into homelessness, and eventually got him back home  for treatment.  At this point in the story, we still didn't know for sure what kind of mental illness Ben had. Even now, we are the observers of symptoms, always watchful for their return, always hopeful they will not, or that they can be explained away by something other than the illness.  

Here is what happened:

"We took a weekend trip to Maine, just the three of us, right after Ben had finished his summer at the day camp. But Ben was acting very strangely again.

He had his backpack with him, always.  Forty pounds of spiral notebooks he just couldn’t leave behind – even if we were going to the beach, or walking near the sea cliffs.

He talked often, but not of ordinary things. His favorite topic that weekend was bragging to us about his “psychic powers.”  Often, he looked at me or Ali and said “I know exactly what you’re thinking. I can read your mind.”

The first few times, we played along.  He was never right, but would say that we were simply lying, that he must know more about what is in our minds than we did.

The three of us went to see a production of Joseph and the Amazing Technicolor Dreamcoat at the Ogunquit playhouse.  Ben, however, often seemed distracted.  We caught him “watching” the show with his eyes completely closed.  He looked as if he were trying to go into a trance.

“What are you doing?” Ali asked him.

“I just enjoy the music better this way sometimes,” he said.

It was weird. It looked weird and it seemed weird. He seemed stoned – but there was no other evidence of that at all.

How many more days before we can go home?

And it was only a weekend vacation.

Ben spent the entire five-hour ride home talking. And talking. It was another non-stop monologue, mostly about his ideas and concepts. It seemed as if he simply could not turn off his brain.

We made it home, finally, and retreated to out quiet and separate corners.  I was worried. Does Ben need to increase his dosage of his medication?

Have they suddenly stopped working?"

Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?

Amanda Bynes is in the news - again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis.  I mention this to Ben, and he says, "Hmmm. Interesting." This story will not, I suspect, make a dent in Ben's insight into his own illness - not now, at least. Patience is key when you love someone with schizophrenia - along with many other qualities.

But we follow the story, to see what the media does with it.  I see Hollywood Gossip report she is on a "drug cocktail" and comment:

"I'm so glad to hear that Amanda is responding to medication (not "drugs"...these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see "anosognosia") but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support."

My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on NPR that is business-oriented, and they have invited me to be part of a show  (coming up this week) on the topic of conservatorship, with Amanda in the news and all. This same issue came to light in when Britney Spears' parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well.  At that time, I was booked to appear on Dr. Drew's HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.

I am Ben's conservator, but it doesn't mean I run his life, or control him. I am simply allowed to help him when he needs the help - and, yes, sometimes when he doesn't know he needs that help. (when schizophrenia symptoms take hold.) It's a safety net. And we need it.

Watch this blog for updates!

"Hearing Voices" Movement...Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben's symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only "understood" their origin?

Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  "hearing voices" movement - or, in the US, something called Mad In America. I'm glad it has worked for some - but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist "voice hearers," as some wish to be called. Unfortunately, most of these groups don't want to recognize the very different needs of people with severe mental illnesses.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.

Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.

My comment to her post follows. A slightly shorter version appeared in HuffPost.

What do you think?

We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.

Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.

My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.

Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.

The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.

Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.

We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.

Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope

Lost chapter: NAMI Family-to-Family, Experiment

Between the first draft of Ben Behind His Voices and the final one that went to publication, a few chapters (well, about 100 pages) were on the literary equivalent of  film's "cutting room floor."    

Here is one of the "lost" segments, from a NAMI Family-to-Family class I was teaching at the time.

May of 2004

I’m teaching my fourth Family-to-Family series, and this group decides to try something different. They vote to invite the “ill relatives” we’ve been talking about for nine weeks to attend the class on Recovery and Rehabilitation, where a guest consumer speaks.  They want their relatives to hear the stories. This is unusual, but this class wants to do it; so tonight we are joined by about five of the people we’ve only heard about since February. Ben is one of them. It feels odd, their presence in the room – one of the most effective things about F2F is that, for once, the family members get to be open about themselves, honest about their own sorrows, frustrations, and hopes.  This is the one place where they don’t have to be conscious of how their words will sound to the person whose illness has caused all those emotions.

I, too, feel self-conscious with Ben in the room. Does he disagree with what I’m saying?  Will he rebel against the idea that I hope for a “recovery” from an illness he doesn’t yet accept?Will this help him, or set him back?

I watch our guests during the class. Most are young adults, but not all.  They listen to our speakers, ask some questions.  They offer some insights, and also some resistance. We are, in reality, not expecting to “convince” them, but we’re still hoping something may sink in sooner or later.  I know I am. You never know.

The best part of the evening comes, unexpectedly, during the break. While all the family members are inside the room, talking with the guest speakers around the snack table, our relatives have taken their snacks into the hall and are talking to each other.  They’re in a circle, and they are talking.  I don’t know what they say to each other, but I do know that my heart lifts at the sight.

They are not alone; they are not so different.  They need more of that comradeship. They need each other.  There are so few support groups for teens and young adults with mental illness, unless they’re in the hospital.  Perhaps, like all young adults, what they need most of all is a healthy peer group that can make them feel like a part of something, and can inspire them to take one more step in the right direction.

I plant seeds. I plant seeds of insight and I hope someday they will grow.

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.

Mental Illness Treatment Laws: Does Connecticut Lag Behind?

The nation weeps

Weeks after the tragedy in Newtown, though facts are still to be confirmed about Adam Lanza's history, we struggle to understand how it might have been prevented - or, at least, how to help prevent it from happening again. 

First, some facts: Court-ordered hospitalization for mental illness is authorized in every state, but each state’s criteria for involuntary treatment is different. Connecticut's report card? Not so great.

“Connecticut's civil commitment laws are among the most restrictive in the nation when it comes to getting help for a loved one in psychiatric crisis,” said Kristina Ragosta, senior legislative and policy counsel for the Treatment Advocacy Center, who serves as the organization’s expert on Connecticut. Ragosta said the law is restrictive in three ways that differentiate it from states with stronger laws.

1. An individual needs to be dangerous before intervention is possible. The standard requires that the individual be a danger to self or others or a danger due to grave disability before commitment is possible.

2. The law provides no option for qualifying individuals to receive court-ordered treatment in the community. This makes Connecticut one of only six states that does not provide the option of assisted outpatient treatment (AOT) as a condition of living in the community.

3. The state’s standard does not take into consideration an individual’s past psychiatric history, such as repeated hospitalizations, and/or symptoms of psychiatric deterioration that could culminate in violence or other consequences of non-treatment."

Here is my letter to the state's bipartisan task force

Dear Committee:

I am the mother of a beautiful son who suffers from schizophrenia. "Ben" is now 30 years old, and with treatment is both a student (Dean's List) and taxpayer (employed in season at a Connecticut tourist attraction, where he interacts beautifully and appropriately with the public).

Without treatment, or when services are cut, he is a patient instead- wandering aimlessly through the halls of a psychiatric hospital until he agrees to go back on his meds. This has happened three times since Ben began his recovery phase - and each time we face the fact that he may never return to us, as there is no mandated treatment, no assisted outpatient treatment, and we his family are left holding the bag and guessing how to help him.

We have struggled to get our adult loved one help and been thwarted by the restrictive mental health treatment laws in Connecticut.

We were fortunate to get educated and supported by NAMI-CT, but other families are not so informed, and eventually feel they have no choice but to give up - and their loved ones wind up homeless, in jail, in a nursing home, or - worst - threatening others and/or acting upon delusions that are very real to them, and may include violence.

treatment works...when you can get it

While I understand that it is unclear what led to the events in Newtown, it is clear that our civil commitment laws are in need of reform.  Nancy Lanza, I will venture to guess, was left with no help, no legal right to mandate help for her son - and ended up guessing how to bind with him. In her case, she must have chosen the only thing she knew from her own childhood: target practice.

Mental Health treatment could have made all the difference.

Too many families, like ours, are left feeling helpless and unsupported. Eventually, our family was able to make educated guesses about how to help our son, because of NAMI, memoirs, and other sources of information. But not all families know how to find this info, and even we sometimes guess wrong. Trust me, no family should have to do it alone. We wind up broke, scared, frustrated, and grieving for the loss of hopes, dreams, and someone we love.

Mental health services make all the difference, and these are woefully underfunded, confusing to find, and difficult to maneuver.  The cost of not providing these services, as we saw in Newtown, is so much higher than funding them, both emotionally and yes, bottom line, financially.

The last time my son had a relapse, the government wound up paying for a seven-week hospital stay instead of part-time residential staffing that would have helped him stay stable.

You add it up.

Let's vote for our futures, and for the one in four families left dealing with mental illness all alone, and for the possibilities that can exist for those who receive treatment (assisted as needed) and support services.

We need a Kendra's law in Connecticut. It might have helped us so many times - and it might have helped those in Newtown.

You can read more about our story in my book, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope. or I will be happy to come and tell you in person.

Thank you.

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

The Refeathered Nest: Not So Empty. Not Just Us!

As we near the end of National Family Caregivers Month, I've been thinking about the less obvious form of caregiving: the fact that so many of our kids return to their old twin (or larger)  beds in the family home, long after we'd imagined we'd have a nest empty enough to turn their old bedrooms into, say, a workout room. Ha.

Sure, my son Ben relies on us more than your neurotypical 30-year-old, because of the different life path affected by schizophrenia.  But my other children, too, rely on us a lot more than I did my own parents when I was in my twenties.  Financial help, washer-dryer privileges, family vacations.  But this seems to be the norm.

Are your kids back at home after college too? Here is why: (thanks to Hannah Peters, and collegeathome.com)Just, sayin' : we are far from alone!

The Parents Network: Eyes, Ears, Heart and Soul

Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)

Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.

Here is the episode of the show where you can download or hear our conversation.

We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.

Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.

This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.

Together we can make a difference. My favorite cliche - because, like many cliches, it is true.

January First Review: Yes, Childhood Schizophrenia is Real

January First: A Child's Descent into Madness and Her Father's Struggle to Save Her
by Michael Schofield

My rating: 5 of 5 stars

It's such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia - only my child was in his mid-teens when symptoms began. Jani was only - well, in hindsight for this loving, confused family, she was a newborn when her "differences" became apparent.

But, like our family, the Schofields thought, and hoped, that love - and disciplined, creative parenting - might just "fix" the problem. Not the case if your child has schizophrenia, trust me - and not easy to accept for either parent.

This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can't do it alone. Then, we have to find the right people to fill out the team. This, as you'll read, is a long journey.

Many had thought "childhood-onset schizophrenia" was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.

Bravo!
Randye Kaye, author "Ben Behind His Voices"View all my reviews

Surviving Stigma: Families Speak Out

This training video for NAMI, the National Alliance on Mental Illness, is used to help family members of those with mental illness cope with stigma.

This was produced by Danolas Productions, and I was proud to be part of it. Families who survive stigma can be more helpful partners in recovery (and if the stars align just right...) View the trailer below.

Book Tour Continues: Trains, Planes, Automobiles

Catching a train to Boston today, then a drive to Marlborough, Massachusetts to participate in the Parent / Professional Advocacy League (PPAL) 2nd Annual Conference & Celebration as keynote speaker, then a car to Logan Intl airport and a plane to Los Angeles for a US Psych Congress regional event. Presenting about partnering for best recovery outcomes in mental illness by sharing our story as told in the book - and in the year since its publication.

After a book-signing, it's back on the plane home to Ben and the rest of the family. After one day together, I drive back to the Boston area to speak with pharmaceutical reps about how more medication options can keep hope alive. Then home, then back to the airport Wednesday - this time to Seattle, to present with Susan Inman, author of After Her Brain Broke, at the NAMI National Convention.

So many are working so hard to increase understanding, reduce stigma, foster respect, advocate for the right to mental illness treatment and better research in the field.  I am so grateful for the opportunities to be one of them. And grateful that the rest of my family is here for Ben, as I travel to hopefully inspire others to become part of recovery in any way they can.

Diagnosis at last: Grief and Relief

It's Mental Health Awareness Day, and HealthyPlace.com (host of my Mental Illness In the Family Blog, and lots of great info, encouraged me to do a video post for the "blog party" -

So here it is - one minute about the "moment of truth" when a diagnosis is finally shared. So many emotions.

Living with Schizophrenia: Your Family is not Alone

Best Mothers' Day gift ever: the Miracle of Ordinary.  Just a simple family dinner for 5, out on the deck, with everyone trying hard to do it all without my help (and me trying hard to stay out of the preparations, not always successfully but close!)  Cute. Sweet. In a MasterCard word: Priceless

Why? So much to be grateful for - happy marriages for both me and my daughter, the end of school finals (i.e. stress) for my son-in-law and son, sunshine, food on the table, etc. - and another Mothers' Day with my son with us instead of in the hospital.

In the past few weeks, I've met many amazing Moms. One of them is Claire, whose daughter Rebecca also lives with schizophrenia, as does my son Ben.  Their story is included in the documentary Living with Schizophrenia (click to view it for free), which is one of Hope and Recovery - when treatment includes the right medications, love of family and community, and healthcare providers who treat the human being, not just the illness,  in a partnership of open communication.

I had the privilege of meeting Rebecca and Claire at the National Council Conference last month in Chicago, along with Dr. Rebecca Roma (also in the film). All of these wonderful women inspire me, and I hope they will inspire you too.

Claire is currently reading Ben Behind His Voices, and says:

Rebecca, Claire, Randye at National Council

I am delighting in your book even more now that I know the author!  Your book is amazing... I like the boxes with information in each chapter...I applaud all your hard work to get this book written.  It really is a great resource .

Thank you! and thanks to all who have shared their stories with me, and the world, so that no one has to feel alone.

Also in the film, also an inspiration, are Josh and his family, Ashley, and Dr. Xavier Amador, the author ofI am Not Sick I Don't Need Help. Read it if you still think you must "convince" your ill relative that they have an illness before anything can be done. It, and this documentary, may change your mind - and help you to be a partner in a loved one's recovery journey.

I am a proud M.R.G. (Mother who Refused to Give up). Because of the support, education and inspiration I've gotten from people like Claire and Rebecca - and the others in this film - the choice to remain beside my son in his journey has been easier, more hopeful, and more successful.

Resilience: Bouncing Back...Bolder

One of the letters in "SEARCH" - the acronym I created and present re what families need when mental illness strikes (or, really, we all need for most challenges) stands for:

Families Have Recovery Process Too

R = Resilience

I wrote about resilience in an article about happiness called Bouncing Back Bolder -because the way we deal with setbacks can strengthen us. We all have them, of course - but sometimes the road when dealing with mental illness seems particularly full of detours and pitfalls.

So when I was asked to be a guest on Angel Tyree's radio show, Bouncing Back to Your Brilliance, I figured it was karma! Angel was a terrific, well-informed and empathetic host. You can hear the half-hour show here.

Here is an excerpt from the article, too:

Confession: I don’t really like lemonade all that much. And, I also think that lemons have their place in this world without being sweetened and liquefied: to balance the strong flavor of swordfish, add tang to a glass of water, keep apples from turning brown.

This much, though, I know is true: if life hands you lemons, and you choose to make lemonade, you have the supply the sugar yourself.

Mental Health Awareness Month, Mothers' Day, and Memoir Readers

May is days away - bringing both Mothers' Day and  Mental Health Awareness Month. This has me thinking about wonderful readers who have taken the time to share their thoughts with me - and not only those who are affected by mental illness in their families (one in four families, btw- we are "the 25%"), but also those who see Ben Behind His Voices as, to quote the Library Journal review, "a darn good read for memoir fans."

Sure, I wrote the book to open eyes to the issues surrounding mental illness and the family, and to help others going through it - but under it all, it's also the story of a mother (and a sister) who refused to give up on someone they love. I don't have to have shoveled coal to appreciate Angela's Ashes. And I'm glad that many family members in "the 75%" not directly affected by mental illness in a loved one are still writing to say how much the story of family love and strength means to them.

a gift from Ben, Mothers Day 2011

Here are some recent comments. Thank you!!!

Randye Kaye has touched my heart with this book. It's not just about battling a disease, it's about a mother's love for her family and her relentless crusade to help her children to be the best that they can regardless of what obstacles in life are placed in their way. Randye brings you into her family circle and writes with such emotion that you feel that you are experiencing every high and low with her. It's a story of courage, of never giving up, of hope. It is a story of inspiration that leaves you feeling that although life does not always turn out the way you hope, it can be ok. This book is not just for families of children battling mental illness, it's for all parents who face different challenges with their children. I could not put the book down once I started it. Such an incredible story. I hope there is a sequel so we can see how Ben is coping a few years from now. Great book for all, I would highly recommend reading it. - ESM, latest customer review on Amazon

It isn't often that I spend a little more than a day finishing a book. I usually have 2 or 3 books going at once and I finish them as the spirit moves me...I was truly moved by your story. - MS, Chicago reader

What strikes me most about the story is the reserve of human endurance and the depths of love and resilience of the family...And Ben: how courageous he is and what it takes to manage the disorder comes through on the pages. Randye Kaye's resilience, determination and courage are inspiring to anyone who must go down this difficult road of schizophrenia or any other chronic illness...this is a painful situation and yet the reader is left hopeful because of the power of hope and love. It shows what it means to be human. - book club reader, Syracuse NY

What can you say about a book that chronicles the descent of a sweet child into mental illness? This is an excellent book, which everyone should read. Mental illness -- and especially schizophrenia -- is so stigmatized that people are afraid of those who are ill. It is sad to watch, with the author, as her sweet, bright son deteriorates before her eyes, and the years of seeking it took before someone correctly diagnosed his disease. And her reactions -- not wanting to be with him, but wanting to protect him; hating him while loving him; missing the beautiful child he once was -- are heartbreaking. I highly recommend this book. - Laura Nichols, Goodreads reviewer

A truly inspiring story of the struggle against mental illness has recently come to my attention. Written by the mother of an individual suffering from Schizophrenia, "Ben Behind His Voices" is a truly illuminating tale of one family's long term experience with the various trials and tribulations that go hand-in-hand with mental disorders. - from Max Ingram, blogger at Runic Realities: