Schizophrenia: Three Moms in the Trenches
Randye Kaye
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Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Available episodes
Newest first
Oldest first
4 days ago
Schizophrenic NYC: Define Normal, Defy Stigma and Homelessness (ep 59)
*Guest: Michelle Hammer *
*Michelle Hammer is a Schizophrenia Activist and spends her time passionately fighting stigma.*
*Michelle was diagnosed with schizophrenia at 22 after a misdiagnosis of bipolar at age 18. *
*At 27, Michelle decided to use her artistic talents and fearless personality to do something that could benefit the mental health community.
She founded Schizophrenic.NYC - a clothing brand with the mission of reducing stigma by starting conversations about mental health. *
*We Ask*
*What did Schizophrenia feel like for you? What is your story?*
*How are you now, and what treatment works for you?*
*NYC Mayor Adam’s homeless initiative - thoughts?*
*What are your thoughts about involuntary hospitalization?*
*How important is coordinating discharge planning once a person is in the hospital?*
*Do you think it is wise to have cops make determinations of mental fitness?*
*The connection between homelessness and mental illness.*
*Links:*
*https://www.schizophrenic.nyc/*
*https://www.webmd.com/schizophrenia/video/video-living-with-schizophrenia*
*https://podcasts.apple.com/us/podcast/a-bipolar-a-schizophrenic-and-a-podcast/id1594381452*
*https://nymag.com/intelligencer/2023/01/eric-adams-mentally-ill-homeless-nyc-hospitals.html*
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*https://www.latimes.com/world-nation/story/2022-11-29/mayor-eric-adams-says-nyc-will-treat-mentally-ill-even-if-they-refuse*
*“These New Yorkers and hundreds of others like them are in urgent need of treatment, yet often refuse it when offered,” Mayor Eric Adams said at a news conference, noting that the pervasive problem of mental illness has long been out in the open. “No more walking by or looking away,” the mayor said, calling it “a moral obligation to act.”*
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*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
*Hosts:*
*Who:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author **(Ben Behind his Voices, Happier Made Simple**)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, **He Came in With It** chronicles her family's story and was released to rave reviews on July 21st, 2020.*
*Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is **Fix What You Can**.*
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Jan 12, 2023
Listeners in the Spotlight: Tell Us Your Story! (Ep. 58)
Seven listeners share their stories of SMI (Serious Mental Illness) in a loved one - and, in one case, in themselves.
This episode grew out of a facebook post. We had so many volunteers to share their powerful stories that we may do more episodes like this, if you find it valuable and moving. I know we did.
Show notes:
Judith Smith's Support group info:
* judithrsmith@difficultmothering.com
Look Again podcast:
https://podcasts.apple.com/us/podcast/look-again-mental-illness-re-examined/id1557736942
Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
*
*Linda's "manual":
*I’d like to share some of my manual that I’ve created along the way:*
*· Learn how to distinguish healthy language, judgement and behaviors from unhealthy or unsafe ones*
*· Listen between the lines-try to understand what’s really being communicated-even when it seems so illogical*
*· Clarify what is acceptable and what isn’t, for you, in your life.*
*· Create a ‘board of directors’ for yourself…who will you turn to for various aspects of managing your loved one’s condition.*
*I now engage only with the healthy parts in conversation especially if it starts to escalate. Ignore the unhealthy.*
*I provide what I can to keep my family member safe, fed, housed, etc.-- When I’m too burned out, I allow myself to say, sorry I’m not able to do that now. I can do it later, tomorrow, etc.*
*I’ve reclaimed my home and decide when I can interact with him and when I cannot. Keep limits clear, factual rather than punitive, and make logical sense, rather than a knee jerk reaction to frustration.*
*FInd ways to connect and love in the face of adversity, unfounded anger and blame*
*Hosts:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author **(Ben Behind his Voices, Happier Made Simple**)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, **He Came in With It** chronicles her family's story and was released to rave reviews on July 21st, 2020.*
*Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is **Fix What You Can**.*
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Dec 17, 2022
Not-So-Happy Holidays? How to Manage with SMI in the Family
What if, for families coping with SMI (serious mental illness) in a loved one, the holiday season is "the most difficult time of the year"?
The 3 Moms Discuss - Holidays past, in joy, crisis or grief - and how we currently celebrate what is...the best we can.
Some tips we share:
* Lower Holiday expectations and Marketing Myths (e.g., perfect holidays)
* Plan Ahead - even for possible disaster
* Have a Plan B - and maybe C, D...
* Include Your Loved One as Much as Possible, Especially if They Can Help
* Don't Let the "Unsqueaky Wheels" feel ignored
* Cherish the Good Moments - Find the Positives
* Be Willing to Change Traditions as Needed
* Set and Enforce Limits - Know Your Boundaries
* Imagine How it Is for Your Loved One
* Family Love Matters - You Do Make a Difference
Happy (and Realistic) Holidays to You All!
Want to Share Your Story in a Voice message?
https://benbehindhisvoices.com/tell-us-your-story/
Resources:
Look Again Podcast: https://www.bcss.org/lookagain/
Tips from NAMI: https://www.nami.org/Blogs/From-the-CEO/December-2021/The-Most-Difficult-Time-of-The-Year-Mental-Health-During-the-Holidays
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
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Nov 10, 2022
Housing That Heals: Essential for Many with SMI (Ep 56)
*guests:- Teresa Pasquini and Lauren Rettagliata, 2 California Moms on a Mission for a System of Care that Works*
*From NAMI CA website: Housing That Heals project:*
*“As two California moms on a mission, we invite you to join our journey across the state and into our future dreams for **Housing that Heals for Families Like Ours**. *
*Housing That Heals is more than a house, a program, or a room key. It is a system of care that wraps a person in all of the necessary medical, clinical, rehabilitative, and social supports that they need in order to live and die in dignity.*
*We began this journey in 2019, using years of experience as moms, advocates, and community leaders as our compass. We set out looking for solutions that would mend our broken hearts and the broken system. We were hopeful that this would be the year that California would recognize that people who live heroically with serious mental illness need more than “Housing First.” First, they need a full system of care that provides care before, during, and after homelessness, crisis, hospitalization, or incarceration. Housing That Heals is a prevention and intervention plan that will systemically flatten the harm curve for those who live with serious mental illnesses.*
*We ask:*
* *What experiences have you had that make housing so important to you? *
* *Is there disparity in your state between funding for housing for those with a Serious Mental Illness and Intellectual Developmental Disabilities? *
* *Why Housing First and Harm Reduction are not HUD principles that are tied to building affordable housing do not work for many with a Serious Mental Illness? *
* *Does Ideology drive the disparity for those with a Serious Mental Illness? *
* *Why does your paper talk about marrying the Recovery Model with the Medical Model? *
* *What criteria did you use to measure if the housing you visited was Housing That Heals? *
* *What Housing have you seen that seems to embody Housing That Heals? *
* *Is it possible for this housing to be accessible to those who are on Medicare and enrolled in their states' public system of care?*
*Links:*
*https://namica.org/community-voices/team-nami-spotlight-housing-that-heals-project-report/*
*The paper:*
*https://hth.ttinet.com/Housing_That_Heals_2020.pdf**
*Our Housing That Heals Facebook Page:
https://www.facebook.com/housingthatheals
Here is the NY Times Article:
https://www.nytimes.com/2022/02/16/opinion/parenting-adult-children.html
*
*
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/**
Hosts:*
*Who:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author **(Ben Behind his Voices, Happier Made Simple**)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, **He Came in With*
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Oct 27, 2022
What Families Want Therapists to Know About Schizophrenia (Ep. 55)
*Guest: Leah Brennan, Leah Brennan, LMFT, CADC *
*Leah Brennan is a Licensed Marriage and Family Therapist and a Certified Alcohol and Other Drug Counselor. *
*Leah got connected to 3 Moms In the Trenches through her clients. Over the past five years, she has had four different parents on her caseload who were all confronting the reality that their sons met the criteria for a diagnosis of schizophrenia. *
* Leah realized that despite her excellent training, she was not adequately equipped to help these parents navigate the challenges they were facing. *
* Leah has a lot of questions for the 3 Moms community that all center around the theme: "What Do Parents/Families Wish Their Therapist Knew About Schizophrenia?"*
* *
*She asks us: *
*How can mental health providers better communicate a diagnosis of SMI when we make it? *
*What do therapists/mental health providers need to understand about HIPAA? *
*What should therapists know about THC or other substances being used in relation to dx of SMI?*
* What should caregivers/advocates/parents look for when partnering with a psychiatrist and treatment team for their child?*
* What kind of mental health support is useful when the family isn’t in crisis/loved one is stable?*
* What needs to be taught at graduate level courses for LMFTs, LCSWs, LCPCs , etc. re: treating families impacted by a diagnosis of SMI? *
*How can/Who should therapists alert and educate in the larger communities BEFORE kids reach the age when symptoms of SMI typically start to manifest? *
*We ask Leah:*
* *What can therapy do for me as a parent of a child with a diagnosis of schizophrenia? *
* *How would you assure someone who wasn't fully comfortable engaging in therapy that it would be a good use of time/validating?*
* *
*Links:*
*Leah Brennan: *
*https://www.leahbrennantherapy.com/*
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
* *
*
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*Hosts:*
*Who:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (**Ben Behind his Voices, Happier Made Simple**)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and was released to rave reviews on July 21st, 2020.*
*Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is “Fix What You Can.” *
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Oct 21, 2022
Tell Me I’m Here: SZ Memoir Becomes a Heart-Rending Play (ep. 54)
*In 2022, the memoir Tell Me I’m Here, went from page to stage at the Belvoir Theatre in Sydney, Australia - to universal acclaim - like “a bold work, tackling difficult subject matter with empathy and insight”- and we have the playwright here with us today, with her own story to tell. *
*We are also thrilled that the theatre company used our podcast as part of their research. *
*Please welcome, from the UK, Veronica Nadine Gleeson *
*We ask:*
* *What drew you to this project? Any personal connection with schizophrenia or other serious mental illness?*
* *Tell us about the process of adapting the work to stage - and when did you begin the play?*
* *Where else did you turn for research?*
* *What did yo learn that affected you deeply?*
* *Has it been produced elsewhere?*
* *Can we bring it to the US?*
* *What’s ahead for you?*
* *
*Links:*
*https://belvoir.com.au *
*Belvoir Theatre on You Tube:*
*https://www.youtube.com/user/Companybbelvoir** *
*Veronica Nadine Gleeson representation:*
*https://shanahan.com.au/client/veronica-gleeson/** *
*Tell Me I’m Here:*
*https://www.amazon.com/Tell-Me-Here-ANNE-DEVESON/dp/0140098461*
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
*Hosts:*
*Who:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and was released to rave reviews on July 21st, 2020.*
*Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is “Fix What You Can.” *
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Sep 29, 2022
A Plan of Action for COD (co-occurring disorders): The Harris Project (Episode 53)
*A Plan of Action for COD (co-occurring disorders*): The Harris Project*
**mental health challenges plus and substance misuse or addiction*
*What comes first: substance use or mental health challenges? It can happen either way.*
*Adolescence is a time of change and challenge. It is also during this time that most mental health disorders arise. In fact, 22% of teens 13-18 have a diagnosable mental health and/or addictive disorders, and 50% of all cases of mental health disorders arise by the age of 14 and 75% by the age of 24 (MHFA.org).
We 3 Moms have been there. We share our family story in books and in this podcast, to help others.*
*Our guest has the same mission - to turn heartache into action, and to honor her son. She was recently featured in the NY times, and she’s here with us today. *
*Stephanie Marquesano, mom of Harris (who died at age 19 and had a COD, or co-occuring disorder), is founder and president of the project named for him - with a mission to change the way these two conditions are noticed and treated.*
* We ask: *
* *Tell us about Harris. If you had to tell the story of his life before the illness and after the illness in five minutes what would you want us most to know? *
* *Early signs: you said in NY times “He was crawling out of his own skin half the time.” - is there anything you wish you had known, anything you wish someone else had known or done? *
* *Can you share your journey to find psychological and psychiatric help? *
* *The combination of substance abuse and mental illness often co-occurs, and yet… not treated together . Talk to us about the “addiction treatment nonsystem” and what should replace it.*
*CODA goals include:*
* *Increased awareness and understanding of co-occurring disorders for youth.*
* *Increased early intervention for mental health challenges and substance misuse leading to a decline in incidence of youth mental health crises, drug misuse, addiction and overdose.*
* *Increased likelihood that those already impacted by co-occurring disorders will seek help and support.*
* *Raise a generation without the stigma typically associated with mental health challenges/substance misuse.*
* *Encourage youth to positively impact their peers/communities by building connections to each other and being a link to resources.*
* *
*LINKS:*
*https://theharrisproject.org/**
Twitter: @theharrispro*
* Facebook: **https://www.facebook.com/theharrisprojectCOD/*
*Instagram: https://www.instagram.com/theharrisprojectcod/*
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
* *
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Sep 15, 2022
Navigating Psychosis & Behavioral Health Systems: Against All Odds: Dr. Gary Tsai (ep. 52)
*As a psychiatrist and system administrator who grew up with a mother with schizophrenia, Dr. Gary Tsai offers an insider’s perspective on the process of seeking care for serious mental illnesses, informed by both firsthand personal and expert professional experiences.*
*Dr. Tsai is also an award-winning documentary filmmaker and author, physician who is board certified in psychiatry and addiction medicine, and the director of the largest substance use system in the nation.*
*We’ll talk about his story, his documentary called **Voices**, and the tips in his his new book titled **Against All Odds**, including:*
* *How to approach impacted loved ones and resistance*
* *Understanding behavioral health systems, policies, programs, laws, practitioners, and payers*
* *Identifying a good clinician or care team*
* *Being an effective advocate*
* *… And much more.*
*Against All Odds** offers tools and strategies to navigate the recovery journey and will reshape your understanding of serious mental illness and behavioral health systems!*
* *
*LINKS:*
*http://voicesdocumentary.com/film/*
*www.AgainstAllOddsToday.com*
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
* *
*
*
*Hosts:*
*Who:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and was released to rave reviews on July 21st, 2020.*
*Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is “Fix What You Can.” *
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Sep 8, 2022
Never Truly Out of the Woods - “Long-Haul” Schizophrenia and the Family (Ep. 51)
*Living with schizophrenia or other SMI (Serious Mental Illness) in yourself or in your family is like a game of “chutes and ladders” - you’re never really out of the woods, but there are wins (progress, good moments and memories) and hopes along the way. *
*Mimi, Mindy and Randye catch up on the latest family journeys with SZ - life-threatening crises, changes in treatment, finding hope and joy, and resilience - in this opening episode of Season 3.*
*We also preview some upcoming guests, and congratulate the production “Tell Me I’m Here” - a powerful Australian theatre adaptation of Anne Deveson’s memoir of the same name. Cast and director listened to our podcast for inspiration and understanding, and their show is getting rave reviews and increasing awareness of schizophrenia in the family. - thank you! *
* *
*LINKS:*
*https://belvoir.com.au/productions/tell-me-im-here/*
*https://www.theatretravels.org/post/review-tell-me-i-m-here-at-belvoir*
*Mindy and her book: **https://mindygreiling.com/*
*Randye and her book: **https://benbehindhisvoices.com/*
*Miriam and her book: **https://www.miriam-feldman.com/*
*
*
*Hosts:*
*Who:*
*Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)*
*Miriam Feldman - is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and was released to rave reviews on July 21st, 2020.*
*Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding. She has served on the national board of the National Alliance on Mental Illness and is the current president of her NAMI county chapter. Her acclaimed memoir is “Fix What You Can.” *
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Jul 21, 2022
Help! I Don’t Understand SSI/SSDI - Ep 50, guest: Dani Page, JD
*SZ 3 moms Ep 50: Help! I Don’t Understand SSI/SSDI*
*Guest: Dani Page *
*§ SOAR (SSI/SSDI, Outreach, Access and Recovery) certified Retired attorney. Instructor on implicit bias in the space of disability.*
*§ Juris Doctorate*
*§ Certified Family to Family facilitator for National Alliance on Mental Illness*
*§ SOAR (SSI/SSDI, Outreach, Access and Recovery) certified—for individuals with behavioral health challenges who are homeless or at risk*
*§ Presenter and facilitator on implicit bias in the space of disability *
* *
*We ask:
Clarification:
Dani would like to clarify something from the podcast in which I participated. The maximum a disability attorney or non-attorney advocate can charge is 25% of an applicant's backpay, up to a maximum of $6,000.*
*SSI/SSDI/SSA - please explain the differences!*
*Who makes the disability determination? (DDS)*
*What are the myths about SSI? Will my loved one have to stop working?*
*How to apply - steps*
*Do I need an attorney?*
*What is SOAR? Can they help? How much does it cost?*
*What materials/records do I need to gather/create?*
*And more*
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*
*Want us to cover a topic? comment to share?*
*Facebook page @Schizophrenia3Moms*
*@SZ3MomsTrenches - twitter*
*Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (**“**Ben Behind his Voices**”, “**Happier Made Simple**”)*
*Miriam Feldman – Artist, Mom, Author “**He Came in With It**”*
*Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“**Fix What You Can**“)*
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Jul 16, 2022
Pete Earley: A Father’s (and son’s) Search Through America’s Mental Health Madness
*Pete Earley is a storyteller whose books include four **New York Times** bestsellers, like**The Hot House** and the 2007 Pulitzer Prize finalist **Crazy: A Father’s Search Through America’s Mental Health Madness**.His years as an investigative journalist include six years at **The Washington Post**. Pete is a tireless advocate for mental health system reform.*
*Many listeners ask: What about the Dads? Pete Earley knows. He was most recently seen on the PBS documentary “Hiding in Plain Sight” with his son Kevin Mike Earley.*
*In today’s episode we hear their family story, and many thoughts on what we’d like to change about the system - including NAMI. We also touch on the new 988 system, and once again Judge Stephen Leifman in Florida, who envisioned a reform program that would help people reintegrate into society by helping them with housing, relationships, and health care—especially mental health care. *
*We ask:*
* *Tell us your story, and Kevin’s story - how h…
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Jul 1, 2022
“Our Son Died with His Civil Liberties Intact” - and What We Did Next
* Episode 48: “Our Son Died with His Civil Liberties Intact” - and What We Did Next *
*One Story of Bedlam - and Activism - in America’s Mental Health Crisis*
*Guests: Norm Ornstein and Judy Harris*
*You are about to meet a couple - Norm Ornstein and Judy Harris - who tragically lost their son Matthew in 2015. Matthew had struggled with mental illness for over a decade, and , as listeners of this podcast well know - that means the entire family was affected. *
*After Matthew’s death, Norm and Judy (along with their son Danny), created a foundation in his name, which you’ll learn about in the second half of the podcast. Another project of theirs is the PBS documentary film, **The Definition of Insanity** looks at one judge’s innovative efforts in Miami to prevent people with mental illness from being treated like criminals…narrated by Norm’s longtime friend Rob Reiner. *
*First, we ask them about Matthews’ story, and, as you will hear, these highly successful acti…
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Jun 24, 2022
You Are Not Alone: On Grief, Guilt, Tough Choices…and Hope (Ep. 47)
*Just the Moms, addressing Q’s and giving updates*
*We talk about:*
* *Our recent advocacy (legislation and keynote speeches)*
* *SEARCH: what families need (Support, Education, Acceptance, Respect, Communication Skills, Hope)*
* *Updates *
*
* *…and address e-mails and facebook comments like*
*Will I ever feel "normal" again? The grief and anger still take my breath away some days. I'm sorry to vent. I will start listening to the podcasts soon. Thank you!*
*How do you all prepare for when your sons get discharged from the hospital but you can tell they aren’t stable yet? I’ve listened to a ton of your podcasts and they are so enlightening- but I’d be interested to hear more of the technical details of transitioning a loved one out of or into the hospital and out of/into group homes for someone not yet familiar with navigating the patchwork of mental health services. *
*
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*What would we tell providers if we could?*
*
*
*Want us to cover a topic? comment to…
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May 30, 2022
An Emotional Response to the Hearing Voices Network: Anti-Medication ? (ep 46)
*Guest:Freddie de Boer*
*On May 17th, the NY Times Magazine published an article by Daniel Bergner, based on his book **The Mind and the Moon**. *
*The article reports on psychosis , from the point of view of Caroline, who is beset by the hallucinations of psychosis. *
*Daniel Bergner explores how to seek a deeper engagement with ourselves and one another—and how to find a better path toward caring for our minds.*
*Or - does he leave out a huge piece of the picture?*
*So many comments about the article, which seemed biased toward the Hearing Voices Network. One such response, from Freddie deBoer, has generated over 7,000 YouTube views so far.*
*Links:*
*NYTimes article:*
*https://www.nytimes.com/2022/05/17/magazine/antipsychotic-medications-mental-health.html*
*
Freddie deBoer’s response:*
*https://youtu.be/yKB6F_VYuZY*
*https://freddiedeboer.substack.com/p/my-response-to-daniel-bergners-new?s=r*
*Want us to cover a topic? comment to share?*
*Facebook page @Schizophren…
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May 24, 2022
Mental Health Crisis on Campus: Steps to Student Support (Episode 45)
*According to NAMI, there is an undeniable and growing mental health crisis that demands both attention and action. *
*Covid-19 has only made things worse.*
*Nearly **2 in 5 adults** struggled with mental health issues in 2020, compared to about **1 in 5 adults** before the pandemic. **Among adults with mental illness**, only 46% received treatment in 2020, a number that is far lower among Black Americans (37%), Hispanic/Latinx (35%) and Asian Americans (21%).*
*The crisis is especially acute among youth and young adults, as trends that had already predated the pandemic have turned even more ominous. *
*In 2020, 75% of people aged 18–24 reported at least one mental health or substance use concern. *
*In 2021, emergency department visits for suspected suicide attempts were 51% higher among adolescent girls than in 2020.*
*Today's guests are working to make things better for their fellow students who have mental illness issues.*
*They are Mindy’s cousin's daughter, Claire Orth…
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May 12, 2022
Mental Illness and Faith - How Can Clergy and Congregations Help? (Episode 44)
*When Mental Illness happens, it happens to the whole family.*
* Do families turn to their houses of faith for help ? And if they do, what happens?*
*We explore this in Episode 44- with 3 moms, one Rabbi and one Pastor. It doesn’t cover all faiths, of course, but it’s a start.*
*Guests: Rabbi Evan Schultz, Congregation B’Nai Israel, Connecticut*
*Rev. Mariah Furness Tollgaard, Pastor*
*Questions:*
* *Are you aware, as a faith leader, about mental health issues (especially SMI) in your congregants?*
* *What does your faith say about SMI?*
* *How do you, as a faith leader, respond to families dealing with mental illness?*
* *Is learning about Mental Illness part of your training?*
* *What part does stigma play in talking openly about SMI? - is it taboo to talk about it?*
* *How can we as activists/advocates help faith leaders serve their constituents?*
*According to Research (lifeway.inc):*
* *Only a quarter of churches (27 percent) have a plan to assist famil…
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Apr 29, 2022
Family Support Services - Where Can We Find Help?
*We all agree (and letters and comments confirm) - the family feels lost. Doesn’t know what to do, where to turn, to get help with:*
*Finding options and services*
*Sorting through them*
*Place to vent and share/run through ideas
*
*Our guest today provides that kind of help, and she is here today to share some tips with us. *
*
Guest, Bonnie Lane, (from Chicago area) *
*For more than two decades, Bonnie has worked privately with families dealing with mental health issues. She has counseled individuals and families as they successfully navigate the maze of care and resources available for young and older adults. Helping families in times of crisis is her mission and her passion. - The mission? - SUPPORT. *
* Bonnie will support you on your road to acceptance of the new normal. *
* *Why does the family feel so stuck and unsupported? (and need services like yours)?*
* *Do you have a personal story that led you to do this work?*
* *What are the top areas of need? (legal? s…
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Apr 15, 2022
Growing Up Too Fast: When Your Parent has Serious Mental Illness
*Guests: Karen Comba, author of The Snipers We Couldn't See: A Memoir of Growing Up with My Mother's Schizophrenia*
*And Christina Lord, mental health advocate (Canada) daughter of a dad with SZ, *
*
First, your stories.*
*How has the experience impacted you (Karen writes about life “with footprints on her back”)*
*How did writing or sharing about it help? Or did it?*
*How did your experience- and the unpacking of it - inform the work you now do?*
*What do you most want other children of parents with SZ to know?*
*What do you want others to know - teachers, practitioners, other adults in a child-of’s life?*
*How to find happier places for your mind?
Links:
https://christinalord.ca/
https://www.karencomba.com/
Books we mention: (besides our own, Ben Behind His Voices, He Came In With It, and Fix what You Can)
She's Not Herself, by Linda Appleman Shapiro (formerly published as Four Rooms Upstairs)
*
I'm Not Alone: A Teen's Guide to Living with a Parent Who Has a Mental I…
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Mar 24, 2022
Homelessness and SMI: Transforming the American mental health system through radical hospitality.
Problem: *Getting our Homeless off the Streets and into Housing*
*Many of our seriously mentally ill wind up in jail, dead, or homeless.*
*It doesn’t have to be that way - and solutions in places like Trieste, Italy can show us the way, Heart Forward.*
*Meet Kerry Morrison, and discover a cost-effective, empathetic solution that lives up to “The human right to a sense of purpose.” *
*Can a transformative care strategy, tested and proven in Trieste, Italy, work in Los Angeles, California?*
* *We hear you.*
* *We see you.*
* *You are safe here.*
* *Your voice matters.*
*Resources and links:*
*www.accoglienza.us**. *
*https://www.heartforwardla.org/podcast-season-1*
*https://www.heartforwardla.org/*
*Episode of Kerry’s podcast with Dr. Roberto Mezzina:*
*https://www.buzzsprout.com/1283882/8741627 *
*
Want us to cover a topic? comment to share?
Facebook page @Schizophrenia3Moms
@SZ3MomsTrenches - twitter*
*Randye Kaye -Broadcaster, Actress, Voice Talent, Speake…
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Mar 18, 2022
Ask the Moms: We Answer Listener Questions in Our First Live Episode!
We invited listeners to come on board for this episode, for some Q and A, and wow did they come through!
This is one of our most powerful shows ever, thanks to you. Yes, if you want, we will do this again.
We discuss:
how we wrote our books
How to help the Treatment team include us - even if they are reluctant (HIPAA, confidentiality, etc.)
Planning for when we are no longer able to help
The value of our anger, the value of our love
Lack of training for many practitioners re SMI (serious mental illness)
Conservatorship/Guardianship
SSI/SSDI
Positive life lessons for us in all this...
and much more.
*Want us to cover a topic? Facebook page @Schizophrenia3Moms
Twitter @SZ3MomsTrenches*
*Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (**“**Ben Behind his Voices**”, **Happier Made Simple**)*
*Miriam Feldman – Artist, Mom, Author “**He Came in With It**”*
*Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Le…
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Mar 10, 2022
The Value of Community: Peer Mental Health and Painted Brain
If you have a mental illness, how does isolation add to the challenges you face?
Guest (and self-described schizophrenic) David "Eli" Israelian talks about his story, and two incredible projects:
*Painted Brain | Putting Brains To Work! We're building community-based solutions to mental health challenges and the impact of social injustice through arts, advocacy, and enterprise. - *
*Painted Brain creates lasting community-based solutions to mental health challenges and the impact of social injustice through arts, advocacy, and enterprise.
and Peer Mental Health:
*Community wellness meetings
Social and Emotional Support Groups
Faith- based support groups
Workforce development
Stipend & job opportunities
links:
https://www.facebook.com/PeerMentalHealth/
https://www.peermentalhealth.com/
https://paintedbrain.org/
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Feb 23, 2022
Money and Mental Illness: The Effect of Finances on Family Mental Health
*We talk a lot about the emotional stress and shock of caring for someone with SMI, but what about the financial shock? Is debt an issue? How does your loved one handle money? How do you get services? Do the wealthy have better support? Do families have to go broke to have support, and what is the additional emotional effect of money on the family mental health?
Savannah Price, in the UK, is doing research on this - and today we turn the tables and let her interview us.
Savannah is building a company to improve the mental and financial resilience of young people with mental health problems by targeting the vicious cycle between money management and poor mental health.*
*We talk about:*
* *financial shocks*
* * the vicious cycle between poor mental health and dysregulated spending*
* * financial literacy*
* *Family responsibility*
* *And look at another, international, health system of “care”*
*About Savannah:*
*Savannah is originally from South Africa, but moved to…
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Feb 17, 2022
Advocating for the Best Available SMI Care: guest, Rachel Streiff
*Rachel Streiff: Mental Health Advocate, Mentor to SMI Caregivers, Data analyst for Team Daniel Running for Recovery from mental illness, (Dr. Robert Laitman’s organization), chemical and biomedical engineer with a legacy six sigma black belt certification - Mother of our guest in episode 22, who is currently a full-time college student.
If you enjoyed her son's story in Episode 22, hear his Mom's side of the advocacy and how she insisted on the best available care - a standard some practitioners do not follow. A very powerful hour.*
*Links:*
*rachel.streiff@yahoo.com
**TeamDanielRunningForRecovery.org*
*Clozapine facebook page*
*Team Daniel facebook page*
*SZ 3 Moms Facebook page*
*Get on the mailing list:*
*rslaitman@aol.com*
*
*
*Dr. Laitman’s Book:*
*https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X*
*
*
*New finger-prick Point-of-service test*
*
*
*Who Are the 3 Moms?*
*Want us to cover a topic? Ask us a question? Facebo…
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Feb 10, 2022
Difficult: Mothering Challenging Adult Children Through Conflict and Change
*“Does anybody have a map?...”** - a lyric from the show **Dear Evan Hansen**, sung by the parents of the show’s adolescent children.*
*If you are a “Mom in the Trenches” of serious mental illness in your child, you also know the feeling - all too well .*
*Judith R. Smith, (mother, psychotherapist, professor, researcher on women’s issues as they age) noticed that the topic of mothering challenging adult kids was a topic that had no map - at least on the bookshelves.*
*So she researched, and wrote one, and it’s available this month.*
*We ask:*
* *Why this book?*
* *What did you learn in your research and interviews with mothers of challenging adult children?*
* *What does shame have to do with it?*
* *“ Unpaid and unrecognized maternal caregiving work continues to limit women’s quality of life” - what can mothers do to help themselves?*
* *Did you learn any tips for helping or handling our challenging adult kids?*
*“**Difficult **brings to life the…
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Jan 25, 2022
Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad
* Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad, DJ Jaffe Advocate*
*Sabah has a brother with mental illness, and is an advocate for him, and more: she is legislative and policy counsel with Treatment Advocacy Center (see episode 31).
SMI is challenging enough, but what does racial inequality add to the picture? Sabah references one of her favorite quotes: "Racism isn't the shark in the water, it is the water."
Or: is it more like smog, that we can each do something to help clear?
According to evermindgroup.com, *
*“Black, indigenous, and people of color (BIPOC) are impacted both in terms of increased risk for mental health problems and in their access to mental health care. Unfortunately, systemic barriers and inequities prevent those in BIPOC communities from receiving the behavioral health treatment they need. When BIPOC communities are disproportionately affected during moments of national crisis, this problem is exacerbated. “*
*Is the syste…
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Jan 21, 2022
The Deep Dark Road: Living With Schizophrenia and Coming Back. Ryan’s Story.
* An Acid Trip in college led to “never feeling the same again” - to actions to feed drug habits, to inner thoughts of suicide and harm, a diagnosis of schizophrenia, treatment - and now, a Master's Degree and full-time work.*
*The 3 Moms ask Ryan the questions our sons aren’t ready to answer.*
* *What does psychosis feel like?*
* *What is the effect of weed on your symptoms?*
* *Do you tell potential new friends you have schizophrenia?*
* *What support helps you? Family? Friends?*
* *What are your “extended thoughts” like?*
* *Why did you ask for voluntary hospital stay?*
* *What advice would you give others with sz? What would a peer support network mean to you?*
*
Ryan says:*
*“Being diagnosed with schizophrenia was my second chance at life in a very, very weird way.”*
*“Paranoia can be a deep, dark road, especially if you’re not aware of it. ”*
*“I'm very happy with where I'm at. It's enough, where I can recognize that I have an illness and…
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Jan 13, 2022
Fellowship Place, One Supportive Community Fostering Mental Health - Ep.33
*“Housing…employment…daytime structure. There needs to be something for people in between all those medical appointments in order to really have a positive meaningful life.” - Guest Mary Guerrera, Exec. director *
*After hospitalization - what? Many people with mental health issues, and their families, struggle to find answers to that question.*
*What would true support and community look like? What is possible?*
*Fellowship Place in New Haven, CT has the following mission statement:*
*Mission Statement*
*To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.*
*Our guest today is Mary Guerrara, Executive Director of Fellowship Place.
Terms to know:*
*HUD = Housing and Urban Development*
*NAMI = National Alliance on Mental Illness*
*NIMBY = “not in my back yard” *
*We ask:*
* *What is Fellowship place? Mission and how you make it work .Wha…
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Dec 17, 2021
Channeling Grief and Anger into Advocacy and Acceptance - guest Jerri Clark
*What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?*
*What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.*
*What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it - although the refusal itself is a symptom of his illness?*
*She says: *
* **“I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious…
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Dec 8, 2021
Eliminating Barriers to Mental Illness Treatment - Treatment Advocacy Center
*Lack of involuntary treatment, hospital bed shortages, anosognosia, criminalization of mental illness, public service costs…*
*Where do we turn when we need to change the system of mental illness treatment? How to break open the barriers? How do we advocate for change?*
*The Treatment Advocacy Center is a national 501(c)3 nonprofit organization dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness. ** *
*The organization promotes laws, policies and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder. **The Stanley Medical Research Institute** is a fully integrated supporting organization to the Treatment Advocacy Center.** *
*Ex. Dir. Lisa Dailey , Treatment Advocacy Center -*
*Lisa Dailey is the executive director of the Treatment Advocacy Center, l…
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Nov 18, 2021
Purpose and Community on Recovery Road - Clubhouse Int’l - Episode 30
*Guest Joel Corcoran, Executive Director of Clubhouse International
WE are registered on Podchaser: *1JYHu8EZSiGN2dxr1Oz7
*Clubhouse International:*
*A Clubhouse is an evidence-based-practice founded on the belief that even the most disabled can sufficiently recover and improve their lives with the help of a supportive community. The Clubhouse model provides pathways to meaningful social inclusion, work and wellbeing. First developed in New York in 1948 by a small group of former psychiatric hospital patients, the model has gained international recognition, scaling to more than 350 Clubhouses operating in 32 countries and growing.*
*“We help start and grow Clubhouses globally where people with mental illness can go to get their lives back.*
*There simply are not enough resources today for everyone with a mental illness who needs help. It’s a crisis situation and the numbers are growing.*
*Clubhouses powerfully demonstrate that people with mental illness can and do lead produc…
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Nov 13, 2021
Dual Diagnosis: Double the Challenge - Episode 29
*Getting personal on this episode about the effects of addiction (drugs or alcohol) on the family - and the double challenge when it co-occurs with SMI (Serios Mental Illness) - in our sons’ cases: schizophrenia.*
*Are we ever really out of the woods? Are our loved ones?*
*What can we do? What must we let go of?*
*The 3 moms get personal here. Solutions? We wish we had some - but we do share ideas of actions and attitude. *
*Maybe you’ll hear your story inside of ours. You are not alone.*
*-----------*
*What is dual diagnosis? (Co-occuring disorder)*
*What works? What doesn’t? - *
* *“Harm reduction” treatment?*
* *12-step programs?*
*Why is it so hard?*
* *Similar symptoms - delayed SMI diagnosisGrief*
* *Grief, Lost Trust, lost time*
* *Relapse disappointment*
* *Stronger drugs now *
*What can the family do?*
* *“Trust, but verify” - blood tests, Urine tests*
* *Set your boundaries/rewards/consequences *
* *Do what works - even if your brea…
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Oct 29, 2021
Not Like the Others: Katie's Story of Mental Illness and Recovery
*Guest: Katie Sanford , blogger, "Not Like the Others"*
*“You raise expectations, and raised expectations are what people need.” - Mindy*
*From Katie's blog:*
"*Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free. "*
*Katie Sanford is a blogger and advocate living with schizoaffective disorder who uses her insights and experiences to promote a deeper understanding of schizophrenia-spectrum disorders. She details her experiences on her blog, Not Like The Others, and is also an ambassador for NAMI Chicago involved with Crisis Intervention Training. She has been a guest speaker for college classes, webinars, and podcasts, and her story has been featured on platforms like Women's Health Online.*
*Questions:*
*Tell us Your Story!*
*How does schizoaffective disorder impact you at work?*
*How does it impact your relationships?*
*Is an outcome like…
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Oct 22, 2021
I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment
*If you care for someone with a diagnosed serious mental illness (SMI) , you know that it isn’t easy to help them begin, or continue, treatment.*
*You hear “I’m not sick! I don’t need help!”*
*That phrase inspired our guest to find a way, write a book, and create a movement.*
*Dr. Xavier Amador is a world-renowned clinical psychologist & forensic expert, and a Family caregiver of relatives with schizophrenia and bipolar. He founded NAMI’s Scientific Council, helped to launch Family-to-Family, Peer-to-Peer & In Our Own Voices, and wrote the book** I AM NOT SICK I Don’t Need Help! *
*We talk about:*
* *Dr. Amador’s family story: his brother Henry, and his son, with Schizophrenia*
* *What do we do when our loved one says I am not sick, I don't need help?*
* *Listening: without judgment, and with respect.*
* *Anosognosia, and how to approach someone who has it*
* *The Henry Amador Center on Anosognosia *
* *The power of your relationship*
* *Changes - and…
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Sep 30, 2021
Better Mental Illness Outcomes through Community Collaboration: CIT
*“Collaborative partnerships between law enforcement, mental health service providers, advocates, family members, and people with lived experience.” - Amy Watson*
*Sound good? That’s the foundation of the CIT Model.*
*“I could treat people like human beings” - Amy Watson*
*Police Activity is very much in the news these days, and response to mental health crises is often left in their hands.*
*Each of us has had experience with first responders, some trained in crisis intervention and some not. CIT Training is at least part of why our sons are alive (and not incarcerated) today.*
*Our guest today is Amy Watson, President of CIT (Crisis Intervention Team) International, a leader in promoting safe and humane responses to those experiencing a mental health crisis. She is also a professor at Helen Bader School of Social Welfare at University of Wisconsin-Milwaukee.
CIT Basic Goals: *
* *Improve Officer and Consumer Safety *
* *Redirect Individuals with Mental Illness f…
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Sep 20, 2021
Schizophrenia and the Family: Is There Hope Beyond Hidden Valley Road?
To end our first season with episode 25, we present the interview that started it all: Mimi and Randye interview Bob Kolker, and are joined by fellow activist/mom Laura Pogliano.
A conversation about #Schizophrenia and the Family: Is There Hope Beyond #HiddenValleyRoad? with Robert Kolker, Miriam Feldman, Randye Kaye, and Laura Pogliano.
Kolker is a journalist and nonfiction author whose first book Lost Girls was a New York Times best-seller and was recently adapted for a Netflix film. This book is Hidden Valley Road, an Oprah's Book Club selection and an instant #1 New YorkTimes best-seller about one family's struggle with mental illness.
Randye Kaye is author of Ben Behind His Voices, and creator of The Power of Kinship programs. She is also a noted voice talent, speaker and actor.
Miriam Feldman is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and will be out on July 21st.
Laura Pogliano has been f…
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Aug 28, 2021
From Politics to Providers: Advocating for System Change in Serious Mental Illness -
*“Mom, the voices are telling me I need to kill you right now.” - *
*What can a parent do after hearing that from a child? *
*How can we educate mental health providers so they really “get” what it’s like to have a serious mental illness, or to be a family member of a loved one who has one?*
*Ever wonder what you can do to make the mental system better for others, even if you can’t help your own family member as much as you wish you could?*
*This episode is about those steps, to help make changes and fix what is so broken about the system. *
*Welcome Leslie Carpenter: Mom. and….*
*Experienced Serious Brain Disorders Advocate working to fix the broken treatment system locally, in Iowa and nationally. Effective speaker for advocacy. Recently retired early from a rewarding 34 year career in physical therapy and management, to have more time and energy to focus on improving the quality of treatment for 11.9 million people with serious brain disorders in our country.*
*…
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Aug 12, 2021
Episode 23- You Are not Alone - Stories of Family emotional Journey with SZ
Are you dealing with SZ in a loved one? Feeling confused? Scared? Angry? Overwhelmed?
You are not alone. We've been there...and how.
There are stages in the emotional journeys of families dealing with Schizophrenia in a loved one. Mimi, Mindy and Randye are now often at the "advocacy/Acceptance" stage - but not always.
In excerpts from our books, and quotes from listeners, we talk about the events and feelings in the earlier stages of the journey.
From Crisis, to Coping, and Advocacy...and the carousel keeps spinning.
And yes there is hope too.
*Who Are the 3 Moms?*
*Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (**“**Ben Behind his Voices**”)*
*Miriam Feldman – Artist, Mom, Author “**He Came in With It**”*
*Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“**Fix What You Can**“)*
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Aug 5, 2021
From Schizophrenia / Addiction, through Treatment, to Success: Carson's Story
*Episode 22- From Schizophrenia and Pot Addiction, through Treatment, to Success: Carson's Story*
*Today we talk with Carson S. , who has an inspiring story to tell, from schizophrenia/addiction to sobriety/recovery success. We talk about his life….what it used to be like, what his challenges have been (addiction/intrusive thoughts/SMI) , and how he is doing now…..and what advice he might give to others who need to have hope.*
*Mimi and I met Carson last week at a gathering at Rob Laitman’s home for his patients and families (**see episode 18**) ** *
* *What happened when you were using marijuana?*
* *Did you realize that was an abnormal response?*
* *As your symptoms progressed, what did you think was happening? Did you even suspect mental illness?*
* *Did your parents or family know what was going on? What about teachers or friends? Did they suspect anything?*
* *When was it that you finally realized you had a problem?*
* *Did you ever “hear voices”? If you d…
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Jul 14, 2021
Tools of Hope: Family Empowerment and Care Coordination in Mental Illness
*
**Today is about solutions -( we’ve done a lot of episodes about problems) - and at the end we’ll share some free resources to help you if someone in your family has schizophrenia - *
Guest: Michael Mackniak, JD
*Free resources:
**https://myfenow.com/3moms/** *
*https://myfenow.com/tools-of-hope/**
*
*Other Links:*
*https://vip.myfenow.com/*
*https://michaelmackniak.com/*
*http://guardian-ct.org/*
*https://www.facebook.com/groups/FamilyEmpowermentNOW/*
*Mike’s book : Saving Melissa*
*Michael Mackniak specializes in coaching families and fiduciaries, to help them with the ability to get the comprehensive services for their loved ones, friends or clients.*
*He wrote "Saving Melissa: The Seven 7C's for Curing the Mental Health System" . It has insight and strategies into the process of creating an interrelated service system in their community. *
* He also leads Guardian Ad Litem Services, better known as Melissa’s Project, which is a copyrighted program based on Care…
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Jul 7, 2021
Schizophrenia in Entertainment - Film, TV, Novels: Accurate or Insulting?
*Catch-up chat: re future episodes; people who call us “overbearing moms” and blame the family; patients’ “rights” vs. family caring; *
*Themes: What does entertainment media get wrong?*
* *Lack of named diagnosis - **UnReal, Girl Interrupted*
* *Inaccurate/unresearched portrayal of SZ - **Words on Bathroom Walls*
* *Madness Always Linked to Genius - **The Soloist, Beautiful Mind, Shine, Proof*
* *Mistrusting Medication and Treatment - **Beautiful Mind*
* *Lack of Diversity - often male/white - no cultural differences in attitudes/traditions represented*
* *Tendency Toward Violence - even serial killers - **The Fisher King, Donnie Darko, The Joker*
* *Hallucinations as mainly visual/romanticized - **Beautiful Mind, Words on Bathroom Walls*
* *Long/Lifetime Hospital stays - **Love Actually*
* *Blaming Family Dynamics/ Bad childhood as only “cause”*
* *Treatable with Therapy alone - meds are bad - **One Flew Over Cuckoo’s Nest*
* *Romantic Love/ A…
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Jun 9, 2021
Siblings: My Brother or Sister has Schizophrenia - What About Me?
*In this episode, we talk with our own daughters about the lived experience of the sibling when schizophrenia hits the family. The emotional toll on this group of family members is often swept aside in the wake of the crises involved in SMI. We give them a chance to speak. *
*Guests: Our Daughters - Angela, Lucy and Ali*
*PAST:*
* *What was it like for you growing up, as your sibling’s illness began?*
* *When did you start suspecting something was wrong? *
* *Did you second guess any things your parents were doing for him?*
* *Did you resent your brother for needing your parent(s) so much? Did you resent your parent(s)? And how did you work through that? (Kathy Day asked)*
*PRESENT:*
* *What is hardest for you about your brother's illness?*
* *How do your friends feel about him? How do they best support you?*
* *Has your life changed in any positive ways because of your brother?*
* *Do you see yourself as a mental health advocate? If so, how?*
* *What is it lik…
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Jun 2, 2021
Rethinking Clozapine: Should it be the First Resort to Treat Schizophrenia? - with Dr. Robert Laitman
*In this episode, we talk meds with an MD. Specifically: Clozapine. Many of us are told that it’s the “last resort” medication, “when nothing else works”. Is that really true?*
*Guest : **Robert S Laitman, MD, is an internal medicine physician at Bronx Westchester Medical Group in New York. Over the last 10 years, he has developed a practice taking care of people with psychotic disorders after his son, Daniel, received a diagnosis of schizophrenia in 2006.*
*Dr Laitman, his family, and his colleague authored the book, "**Clozapine: Meaningful Recovery from Schizophrenia**."*
*We talk about:*
*1. Why do you say clozapine should be the drug used first? Why isn’t it? *
*2. Why is clozapine used more in other countries compared to the United States? Why isn’t it marketed more here? *
*3. Why does clozapine take so long to fully kick in (a year in some cases) compared to other antipsychotics? Your son continues to improve, even after being on it for 9 years. In what ways…
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May 13, 2021
What Schizophrenia Steals - Emotions Deeper in the Trenches
*A “Just Us 3 Moms, Digging Deeper” Episode.*
*Tonight we just talk about our boys - and what we’ve lost, what they have lost.*
*Feeling even more alone than ever? Not only is your family member diagnosed with schizophrenia, but you have your own reactions and emotions to deal with - what is “normal”? What do other families feel? What are the stages of these reactions? What can be done? *
*We Three Moms have been there...are there...and we open up to share the raw truth with you. This podcast strives to explore issues, open minds, offer solutions...but we also promise to tell our truths. This is one of those episodes.*
*We touch on:*
*Anger, Grief, Helplessness, Fear, Guilt Resentment, Exhaustion - all normal feelings *
*What Siblings Lose*
*Family events - Changes in Routine (like travel) - possible with schizophrenia? *
*Grief - and how the process can differ (and repeat) with Schizophrenia in a loved one*
*The land of “What might have been…” sorrow - what ha…
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May 4, 2021
AfterWords - Stopping the Revolving Door - Assisted Outpatient Treatment
S*ometimes the best parts of the conversation happen after we press "stop" - so today we captured what happened after that. Guest is Eric Smith,* *a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT). *
*AfterWords:*
*Why does Eric advocate for AOT?*
*What about AOT for someone who isn’t as “stellar” as Eric?*
*What’s a real human right? To make your own decision to refuse treatment while your brain is ill, or to receive “ordered” treatment when you’re not yet aware that you need it?*
*Treatment, Structure. Purpose, Love - 4 elements of success.*
*“The least amount of harm and the most amount of good”*
*When families refuse to be the caretakers -what team can take over if we fight for it?*
*The pitfalls of the child-parent dynamic*
*From Serious mental Illness to Thriving in reality*
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May 4, 2021
Stopping the Revolving Door - Eric's Powerful AOT Success Story
*Guest : Eric Smith is a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT). His story has been told in the documentary **Stopping the Revolving Door – A Civil Approach to Treating Severe Mental Illness**.** He has been written about in**Bedlam**, **authored by Peabody Award-winning Kenneth Paul Rosenberg, MD.*
*Court-Ordered Treatment for Serious Mental Illness saves lives and families. Eric Smith tells his story, and why he advocates for AOT (Assisted Outpatient Treatment) *
* *Update: Mimi and Nick on **ABC news** *
* *Issue: **Miriam Delphin-Rittmon,** Biden's nominee for Asst Secretary for Mental Health and Substance Abuse from Connecticut, is not an advocate for AOT. Connecticut is one of three states without AOT.*
* *Story: A big step - to admit to “wrestling with symptoms” *
*And, with our guest,*
* *What is AOT (Assisted Outpatient…
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Apr 15, 2021
NAMI’s Family to Family Program - Mental Illness Education, Support, Strategies and More
*Have you ever wished there were a way to learn about your loved one’s mental illness, so that you can stop grasping at straws, making things worse, being always in the dark about what to do and how to cope?*
*This DOES exist - and it’s free. It’s called Family-to-Family, offered by NAMI (The National Alliance on Mental Illness) - and they have tons of other resources as well.*
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*https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family*
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*This FREE course is offered by the National Alliance on Mental Illness (NAMI) called Family-to-Family. Randye has also taught it countless times, and is one of the state trainers for Connecticut. Mimi and Mindy were forever changed (in a good way) by taking it.*
*Our guest: Suzanne Robinson, Director, National Education Programs, NAMI - will tell us all about it.*
*We talk about:*
*What is NAMI? National Alliance on Mental Illness - how does it help people, families and professionals dealing with mental…
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Apr 7, 2021
Let’s Talk about the Law - Mental Illness and Legal Matters, Part One
*Guest: Judge Lisa Wexler, Connecticut
In past episodes we’ve had the chance to talk with social workers, psychiatrists and other practitioners about the “flaws” in the system to get help for people with schizophrenia - get them off the streets, into treatment, and stable. *
*Many of our listeners have shared frustrations with the law, confusion about the process, and want to know more. Today we get the story from the other side of the bench.*
*Judge Lisa Wexler (**https://www.lisawexler.com/** *)*has been a probate judge in Connecticut since 2013. She is a graduate of Johns Hopkins University and NYU School of Law. She has practiced law in NY and CT for many years and is also a professional mediator . Lisa is also the creator of The Lisa Wexler Show, a daily talk radio show airing on WICC-600 in suburban CT and metro NY. *
*We Talk About: Part One
Commitment laws in CT and the abilities of conservators. *
* *Can medication for schizophrenia or other SMI (serious mental i…
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Apr 7, 2021
Let’s Talk about the Law - Mental Illness and Legal Matters, Part Two
*Guest: Judge Lisa Wexler, Connecticut
Many of our listeners have shared frustrations with the law, confusion about the process, and want to know more. Today we get the story from the other side of the bench.*
* This is Part Two of our conversation with Judge Lisa Wexler (**https://www.lisawexler.com/** *). *Judge Lisa has been a probate judge in Connecticut since 2013. She is a graduate of Johns Hopkins University and NYU School of Law. She has practiced law in NY and CT for many years and is also a professional mediator . Lisa is also the creator of The Lisa Wexler Show, a daily talk radio show airing on WICC-600 in suburban CT and metro NY. *
*We Talk About: Part Two: *
*CT one of three US states that doesn’t have Assisted Outpatient Treatment (AOT). Do you wish it did?*
*Need for “acute event” to be admitted to hospital. Can we intervene before it gets to that point? *
*Civil Commitment (Minnesota and some other states)*
*How hard is it to make decisions for those with…
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Mar 31, 2021
Episode 11 - Marijuana and Schizophrenia - Friends or Foes?
* Marijuana - it’s being legalized for medical and recreational use more and more, on a state-by-state basis. But for people diagnosed with schizophrenia, there are concerns.
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* *Does it “cause” or trigger schizophrenia ? Or is it’s use just a result/symptom of the illness as it helps some with the brain confusion?*
*Well, the jury is still out on that question...but, we have a spirited discussion and more with our Guest: Dr. George Realmuto, Child Psychiatrist (University of Minnesota, emeritus).*
*We also ask:*
* *Some who use after diagnosis say it helps with symptoms, and they need fewer meds. Others say it makes things worse. Any studies?*
* *.legalization.... good or bad? For potential addicts, for those of us with SZ in our families? Decriminalization issues. Should prevention be included in bills?*
*1. From a scientific perspective, what happens to the developing brain when marijuana is used? *
* 2. If a young person did not have the genetics that could lat…
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Mar 11, 2021
Rebuilding Life When you Have Schizophrenia: Rebecca’s Story, Part 2
*Rebecca’s Story, Part 2*
* *What do the intrusive thoughts (aka to some, “voices”) say to you?*
* *Rebuilding your life, and giving to others - how does that help?*
* *Psychiatrists - the good, the bad, the changes, and why it matters*
* *Relationships - How were they affected? *
* *Whether to disclose your illness? When? How?*
* *The ups and downs of recovery. how do you know when you are starting to slip?*
* *We talk about 4 pillars of recovery - treatment, structure, purpose, and love/community. Are these important, and how do you get them?*
* *What has family support meant for you?*
* *Has Covid affected you?*
* *Constructive self-talk: What words help you? What’s next in your life?*
* *What message would you give to those with Schizophrenia, their families, and practitioners?*
*Quotes:*
*“So much of this is...not only are we dealing with this illness, but we have to keep up with 50 million pills, or it may cause weight gain, or tardive dyskinesi…
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Mar 11, 2021
Rebuilding Life When you Have Schizophrenia: Rebecca’s Story
*Rebecca Lyn Phillips*
*Rebecca Lyn Phillips, 43, is a published author, speaker, and mental health advocate. She regularly shares her story of trial and recovery to help others who need hope. She wants to shine a light on a dark subject and show that life can happen again.*
*Episode 9: Rebecca Lyn Phillips, Part One*
*3 Mom Updates: *
* *When SMI peer community can be a problem*
* *Having a “mundane” problem put in perspective*
* *Periods of calm *
*Rebecca’s story: *
* *early life - filled with love, or filled with trauma? (the answer: love)*
* *"Dark Days" how psychosis started for Rebecca, what it felt like " I was tormented by intrusive thoughts and beliefs that hurt me." -- what was that like?*
* *Spirituality and psychosis *
* *“Voices” or “intrusive thoughts”?*
* *First and subsequent hospitalizations and medications: what was that like?*
* *Why go off your meds if they seem to help?*
* *Did you tell friends and other family members about…
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Mar 3, 2021
Beyond our Borders: Mental Illness in Romania
*Personal story updates include: case management team change; possible medication change; need for employment, and support to get there. (first 5 minutes of podcast)*
*Then, a conversation with Amedeea Enache, Exec. Director of Estuar Foundation in Romania, Board Member of Mental Health Europe*
*We talk about:*
* *Deinstitutionalization, esp. After break from communism in 1989, then joining European Union in 2007 - where do patients go once discharged?*
* *Disparities between the urban and rural area in terms of services provided*
* *Stigma/secrecy - people diagnosed, and their families*
* *Employment for those with SMI -importance, availability*
* *Awareness in the field, who are the main actors, and what is the families and members involvement*
* *What our countries can learn from each other*
*Links: **https://estuar.org/** (it’s in Romanian, though) - facewbook page: https://www.facebook.com/estuarclubhouse*
*Estuar Foundation was established in 1993 by Penumbra A…
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Feb 21, 2021
"They Die with their Rights On” - Our Broken System of Emergency Psychiatry
*Interview with Lynn Nanos, L.I.C.S.W. *
*If you’ve ever wondered why our loved ones aren’t getting the help they need, Lynn writes about her side of the process in the book **Breakdown: A Clinician's Experience in a Broken System of Emergency Psychiatry**. *
*Stories about her patients open our hearts, and she shares clear and valuable solutions to help fix the problems. *
*"They died with their rights on” - what’s wrong with that?*
*How do inpatient units discriminate against those who are most sick?*
*How can discrimination be curtailed or eliminated?*
*How common is it for you to evaluate people who are clearly sick enough to be in the hospital, but there aren’t enough markers to warrant hospitalization?*
*The law only cares about what is “imminent.” Why? *
*Psychiatric involuntary transfer and hold laws*
*The revolving door of cycling in and out of hospitals and jails.*
*AOT - Assisted Outpatient Treatment*
*Peer specialists - do they go too far?*
*The an…
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Feb 16, 2021
Conservatorship for Schizophrenia: Who Needs it? Why? and How?
*In the news: Britney Spears and conservatorship*
*Brief Sons’ Recovery updates, “good and bad” - and The Miracle of Ordinary*
*What is Conservatorship? - varies from state to state*
*How we did - or didn’t - get to be our sons’ conservator/guardian*
*Mindy and Mimi - Managing without conservatorship*
*Randye and Ben’s 's Journey to Conservatorship - and Why *
*Releases of Information*
*Can you get right to involuntary commitment? Right to Medicate?*
*Renewing, and Annual Reports*
*Why the Relationship Matters*
*Guardianship and Civil Commitment - Minnesota*
*Protecting Loved Ones from Being Victims*
*Protecting Ourselves from Being Victims*
*Some Myths about Guardianship*
*A few workarounds we use*
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*Quotes:*
*“My feeling about all this is: Get the Job Done.We need to take care of our kids.” -Mimi*
*“Conservatorship? I use it to protect him. I use it to be there if needed. I can save him from financial decisions he made and wasn’t equipped to m…
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Feb 8, 2021
Family Stories and Top Five Grassroots Changes in Serious Mental Illness: Dede Ranahan, part 2
* Top Five changes we Need - and More
#1 Reclassify SMI (Serious Mental Illness) as a physical/medical, not behavioral condition - we need to fund more research : and Why is there no cure for SZ?*
*#2 - HIPAA (discussed in more detail in Episode 4)*
*#3 - Repeal the IMD Exclusion (would make more hospital beds available for SMI)*
*#4 - Full Continuum of Care*
*#5 - Decriminalize SMI*
*Also : Early signs? Early Detection. *
*A state level change that is helping families in MN*
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Feb 4, 2021
64+ Family Stories and Grassroots Change: Dede Ranahan and 64 More Moms, Part 1
*Interview with Dede Ranahan, author and editor (64 co-authors) of “Tomorrow Was Yesterday...Mothers Across the Nation Tell It Like It Is“ living with SMI (Serious Mental Illness) in our loved ones. Not just family stories, but about action. Advocacy. What we want to see happen to help families like ours.
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* Author Talk: *How we got our books from idea to publication*
* *How Dede found and collected 64+ stories of Serious Mental Illness in the family*
* *Getting change on a Federal level to help families- The White House Book Project *
* *Getting Down to Grass Roots - the 5-point plan for change *
* *HIPAA reform- #2 on the list, and why it matters so much *
* *Preview of Part 2 (Episode 5) - the rest of the Five-Point Plan, and what we can do*
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Jan 27, 2021
Let's talk about the voices - What the heck is schizophrenia ?
* *What is schizophrenia? - definitions we use/hear - what it is not*
* *What do you think happens in your son’s head when symptomatic? What does it look like to you and your family? What do you observe?*
* *What changes when treatment is effective? What doesn’t change?*
* *Positive and Negative Symptoms of Schizophrenia*
* *How can we empathize?*
* *What effect do street drugs have on treatment?*
*Quotes:*
*“Schizophrenia is a serious mental disorder in which people interpret reality abnormally. Schizophrenia may result in some combination of hallucinations, delusions, and extremely disordered thinking and behavior that impairs daily functioning, and can be disabling. People with schizophrenia require lifelong treatment.” - MayoClinic*
*“The fact that he would have this constant loop of negative voices in his head, and I have no ability to fix it or help him...it’s devastating” - Mimi*
*“And I’ve heard him whisper, under his breath, ‘no, that’s just…
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Jan 20, 2021
Getting Help:Low Points, Wild Goose Chases and Lifelines
* *Q: Describe one of your lowest points as schizophrenia progressed in your son - how did you survive?*
* *Q: Were there “wild goose chases” while trying to figure out what is happening? *
* *Q: Describe a moment of hope / accomplishment - what was working ?*
* Getting Help: "*SEARCH"*
* *Support - emotional, practical - how to feel less alone*
* *Education - Books, Classes *
* *Acceptance - how to get there, stay there?*
* *Resilience - building the skills*
* *Communication skills - what helps not make things worse?*
* *Hope/Humor *
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Jan 13, 2021
Who we are, what we know, how to cope
* *Why this podcast? - a place to tell the truth about SZ in the family *
* *Our stories, sons, our books (and why we wrote them)*
* *Who were our sons ….before?*
* *Where are our sons today?*
* *What has been the hardest thing about this so far?*
* *PEOPLE ARE ASKING...What we wish we’d known earlier *
* *Each close with message:*
* *Mimi - Joy is still possible *
* *Mindy - advocate!*
* *Randye - It is what it is - savor every good moment but lower expectations*
* *How to get in touch with us *
* *Please share! And send questions you want us to talk real about*
* *Join us again for next Episode: Sharing what has helped us - tips through the trenches*
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