Tag Archives: Randye Kaye

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:

Encouraging Treatment: Loving Parent? or Cruel Dictator?

(repurposed from my final blogpost on “Mental Illness in the Family” on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself. Continue reading Encouraging Treatment: Loving Parent? or Cruel Dictator?

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!

WSFA.com: News Weather and Sports for Montgomery, AL.

Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

The stage on rehearsal day
The stage on rehearsal day

I’ve just returned from Warsaw, where I was honored to have the chance to speak to a global audience

With Pete Earley
With Pete Earley

about our family experience with schizophrenia and recovery in my son Ben – and to have shared the stage (well, one at a time…) with the wonderful Pete Earley, author of Crazy: A Father’s Search Through America’s Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.

So, for newbies to this site, here is a “nutshell” version of our path so far. I wrote this to send to NAMI, for possible media interest.

So – the “movie trailer” version of where we’ve been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well – but it has been a long road, and we almost lost him several times – so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves – to make sure things continue to go as smoothly as possible.

Update: Two More Years into Schizophrenia Journey

snow...like the symptoms that can coat Ben's thoughts
snow…like the symptoms that can coat Ben’s thoughts

Yesterday I was alone with Ben all day.  Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow.  Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben’s company.  Here is what happened:

  • Ben helped me shovel the driveway – I mean really helped, as in he did 75% of the work.
  • Ben cooked us a delicious homemade pizza for dinner.
  • We watched an animated movie – well, parts of it – during the required “watchful time” after he takes his meds.
Any parent of someone with schizophrenia will tell you that this is a day to be grateful for – and I am, believe me. No, life isn’t perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.
I’m also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into “independent living” for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our “journey from chaos to hope” remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).
Truly honored and grateful…all of a sudden, three new 5-star reviews for Ben Behind his Voices: 
1 -“I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye”
2 -“As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book.”
3- “I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos”also came across this one, though it was in the form of a comment on another blog, and I can’t find the author’s page…(ah, Google Alerts)…

“Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion.”

You have truly made my day, readers. THANKS!

“Making Money Off My Son’s Illness”? A response

This post started out quite differently.

I write another blog called Mental Illness in the Family, which appears on HealthyPlace.com, and though I usually keep these blogs separate from each other, I often wonder why.

Today’s post on Healthy Place has to do with a topic I often – sadly – must revisit: relapse, or the return of symptoms. in it, I write:

I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities. Continue reading “Making Money Off My Son’s Illness”? A response

“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)Cornerstone Concept
  • 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.

socializationThe 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.”

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

Dear Reader:

BBHV audiobookcover
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. Continue reading Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

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

BynesAmanda 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 marketplaceNPR 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.
safety-net
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!