Pete Earley: A Father’s (and son’s) Search Through America’s Mental Health Madness (Ep. 49)

Pete Earley is a storyteller whose books include four New York Times bestsellers, likeThe 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 have things changed since you wrote “crazy”?
• 988 is rolling out - comments?
• What has been your experience as a “Dad in the Trenches”? Do you think it’s different from the way Moms tend to handle mental illness in the family?
• Did your book, Crazy, inspire any changes in the mental illness/prison system?
• What are your thoughts on the recent direction of NAMI? Are there other organizations who are more about SMI (serious mental illness)?
• Tell us about Hidden in Plain sight and what that experience meant for Kevin - and for you.
• What are the most pressing issues today that you are fighting for?
• What would you most like other Dads to know?

Links: http://www.peteearley.com/

Judge Leifman speech:

https://www.youtube.com/watch?v=UFbyI6I0Mlk

The Lifeline and 988 - https://988lifeline.org/current-events/the-lifeline-and-988/ 

NPR 988 story:
https://www.npr.org/sections/health-shots/2022/07/15/1111316589/988-suicide-hotline-number

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“)

Transcript

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SPEAKER_02 0:00

Today we chat with Pete Early, a storyteller whose books include four New York Times bestsellers, like The Hot House and Crazy. His years as an investigative journalist include six at the Washington Post. He's a tireless advocate for mental health system reform, and I'll tell you why. A lot of listeners ask, what about the dads? Well, he knows, and he was most recently seen on the PBS documentary Hiding in Plain Sight with his son, Kevin Mike Early. So today we hear their family's story, lots of thoughts on what we'd like to change about the system, including Nami's current focus. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy K.

SPEAKER_05 0:54

I'm a little late because I've been looking through my bookshelves for everybody's books, and I can't find I loan a lot of them out. Uh, and you know, I need to start keeping track of whose book went where. So sorry about that.

SPEAKER_02 1:09

It's okay. I had to go looking for yours, and there's a little post-it note down that says, write to him website.

SPEAKER_03 1:17

Your book was the first book I ever read when Nick got sick. It was the first one that it was like, oh my god, somebody else went through this. Yeah.

SPEAKER_02 1:28

Well, Pete's got like 21 books, I think.

SPEAKER_05 1:31

Yeah, my last, hopefully, my last one comes out in March. So that'll be 22. I figure I've had my say after 22 books starting to uh in a lot of.

SPEAKER_04 1:41

I since then read The Hot House, which then that really made sense then. Why you you know how you were able to get in all those prisons and do all that research. And yeah.

SPEAKER_02 1:52

Welcome to um episode 49. A lot of our listeners have been saying, okay, your mom's what about the dads? And uh so we have a one very special dad on today, and we're gonna be talking, we have so much to talk about. Pete Early was most recently seen on the PBS documentary with his son, proudly using his real name, Kevin. Now, hiding in plain sight is the name of it, right? And Kevin Mike Early is his son, but way before that, both Mindy and Mimi and I all read his book, Crazy, A Father's Search Through America's Mental Illness, Madness. And Pete has been a tireless advocate for his son, and as an investigative journalist of so many years and author of soon to be 22 books. As you say, you have a lot to say. You've got a fantastic blog, and you've been very supportive of this podcast and of us as authors, and we so appreciate you. And last time, I think I saw you, Pete, you and I were in Warsaw, Poland.

SPEAKER_05 2:57

Yeah, that's pretty wild, isn't it? Yeah.

SPEAKER_02 2:59

Wait a minute, let's hear a little more about that. We we were present, I think I was your warm-up act, or you don't think so. No, whatever. Anyway, we were both presenting to a pharmaceutical company uh meeting of their sales reps in Warsaw, and we each spoke about our stories and then told them please keep making more medication that works and please sell it so that people can use it. And it was a it's a great experience, and we got to to chat. So yeah, that was quite a while ago, but anyway, so welcome. And just before we get into, we're titling this episode the same as your book, A Fathers and Sons Continuing Search Through America's Mental Health Madness. But I do want to mention that today we've been talking about the 988 crisis line, and NPR did a wonderful story on it today, including two happened to be moms, one who lost her son to police shooting because they didn't know how to handle a crisis, and one whose son got immediate help when a crisis unit was set, was sent out, spoke to her son with respectful tones and words, and got him straightened to a crisis center. And so the hope for 988 when it rolls out is that instead of just calling 911 and getting police who may or may not be equipped to handle a crisis or trained to handle a crisis, you will get a crisis, a mobile crisis unit. And it's also a suicide hotline. So 988 rolling out fully soon, but uh you may want to catch the NPR story on it, on all things considered, because it was it was great. So welcome, Pete Early. You've got a fantastic, very active blog, and you're a tireless advocate.

SPEAKER_05 4:53

That's very kind of you. Yeah, crazy refers to our system. I always like to point that out because crazy is one of those words that kind of the red flag word that gets people upset. But uh I used it intentionally to refer to the system. And uh when you're talking about 988, you know, I was on the federal federal panel that really started pushing that, and the the idea is brilliant. You have somebody who can triage calls and say immediately, okay, this person uh needs to have a therapist. And ideally, the operator can say, okay, I've used my electronics connections and you have a therapist, and you can go in and see that therapist uh next Tuesday. I've already made the appointment for you. And then you have someone who calls in, they say, Well, you need you need to be evaluated. We're dispatching a mobile crisis response team. And then you have someone who calls in and you go, Wow, you need a little, you need to go to a drop-off center, or uh, you know, here's how you get there, and how how can we facilitate that? And then in the end, you know, of course, is uh we need to send uh the police to come in. Now that's the ideal structure. They've had luck with it down uh outside Phoenix, Arizona. Um but as with everything in mental health, the ideal and then getting it actually to happen on the trenches where you guys are is such a wide, wide gap. And uh I didn't hear the NPR thing. I'll look it up right after this program, but I did see uh I know that many states they they don't have the access, they don't have those services. You know, Fairfax County is one of the richest um counties in the United States. I mean, the average household income is about 165,000 a year, uh, you know, compared to the national average household income, I think is around 60. So it's three almost three times that. And yet we only have two mobile crisis response teams. They don't work 24 hours a day. It's a county of five uh of two million people. And how can how can you possibly respond when the police are getting uh you know averaging uh four to five hundred calls a month? And you know, so it gets frustrating.

SPEAKER_04 7:17

That's the same problem we have here in Minnesota. So our state NAMI is not publicizing it very well. They are doing a soft education, it was you know on Facebook, and but there are no big billboards and ads because of not building up expectations. Because if you call and then there's nothing to send or no place if someone is sent for them to take you, what good does it do?

SPEAKER_05 7:42

Exactly. And that's the you know, that's the problem when we fought so hard to get um jail diversion, crisis intervention team, trained officers, um, mental health courts, and all these things, the uh sequential intercept model, identifying when you can get somebody uh who's in crisis, who ends up in jail or prison, how you can get them into services. But then when you have no housing, you have no transportation, you have no job facilities. I mean, I I look at my son's story, and what really helped him were services. It wasn't me, it was services and a really great social worker.

SPEAKER_02 8:30

Well, so let's let's let's get to that. And you know, we could talk about 988, and we'll probably in the future devote a whole show to it because you're correct, Pete. I mean, if it's great to have a number, but if there's no services to send out when somebody calls that number, I think that's why they're rolling it out so slowly. So we all love the idea and we need it not to be crazy and make it work. So thank you for for pointing all that out. That's that's so important. We all know what the wait lists are, um, waiting times for therapists and evaluations. So one step at a time, but let's back up a bit. And uh first of all, if if this is the first time you're listening to our podcast, because you're a Pete Early fan, and uh Mimi and uh Mindy and I are each moms. We each have a grown son with schizophrenia, and we're each continuously facing our own challenges with that. But we are finding some solace and some purpose in advocacy and in having this podcast. So we're happy to be here with Pete, who is also the parent of someone with a serious mental illness. And we want to hear about the father's point of view as well as the investigative journalist point of view. But let's start with the dad part. So if somebody doesn't know your story and didn't read your book crazy, um, tell us about somebody called Mike in the book, but now who is proudly using his name, Kevin. Tell us a bit about your story and what it was like for you as a dad.

SPEAKER_05 10:05

Well, first, thanks for having me on. And my heart goes out to you because schizophrenia, as we all know, is in my opinion, the absolute worst mental illness and the toughest to deal with. Um so my son's mental illness came without warning. He was an art student at the Pratt uh Institute in New York, and we talked every Saturday. I live outside Washington, D.C., and we talked every Saturday, and one morning he says, Dad, food doesn't taste good. And then he said, Dad, uh, I took four homeless people to breakfast today. And I said, Well, what? And he says, Dad, I'm having trouble. I can't tell the difference between whether I'm dreaming or awake. So I rushed to New York. And um, now this is an important point. He went willingly with me to see a psychiatrist, and that is such a wonderful opportunity when they have that first break to get them in because they want to know what's going on too. Uh, but what happened? We went to see a psychiatrist, and he said, if you're lucky, your son is using drugs. If you're not lucky, he has a mental illness, bipolar disorder. And I thought, what? Lucky if he's using well, a blood test showed he wasn't using drugs. So I said, bipolar disorder. I, you know, I vaguely, what it what he said, your son has an incurable disease. He will be sick all of his life. He will have to take medications that probably will make him gain a lot of weight, make him prone to diabetes. It's unlikely he'll really be able to hold down a job. It's unlikely he'll ever be able to get married. Uh people with bipolar disorder often end up in encounters with the police and end up um, you know, in jail or homeless, or and he said, I gotta be frank with you, people with mental illness die 15 to 20 years faster or quicker than the normal people, uh, you know, people without mental illness. And I walked out of that and I thought, man, this this is my son. This guy's this guy's way off. And uh he prescribed medication, and Kevin did well for for uh several weeks. And I thought, see, that guy was just a quack, you know, he was over traumatic and everything's fine. Well, flash forward a year and I get a frantic phone call. Uh Kevin is wandering around Manhattan, he hadn't slept for five, he hadn't eaten for five days, he barely slept, he was sure God had him on a secret mission. I raced to New York, convinced him to get in the car, drove four hours down. I didn't know where to go, so I went to head into an emergency room. And during that ride, he would laugh one minute and then begin sobbing the next. And he was seeing secret messages dog is God. And we went in the emergency room, and uh the nurse rolled her eyes and while he was talking nonsense, and they put us in a room and we waited and waited and waited and waited. And after four hours, Kevin said, I'm gonna leave. And I literally raced out and I grabbed a doctor. I'll never forget he came in with his hands up as if he was surrendering, and he says, I can't help your son. And I said, What? You haven't even looked at him. He said, Virginia law is very specific, unless you're an imminent danger to yourself or others, you can't be required to enter treatment. And the nurse told him Kevin thought pills were poison, he didn't want to take any, and we'd been there four hours. So then he turned to me and he said, Look, you seem like a concerned dad. Bring your son back after he tries to hurt you or someone else.

SPEAKER_04 13:33

Yeah.

SPEAKER_05 13:34

So I took my son home, and 48 hours later, he slipped out of the house. He broke into a stranger's house. Luckily, no one was there. He broke in to take a bubble bath to wash away his sins. It took five police officers and an attack dog to get him out. And my son became one of the 2.2 million people who are booked into jails every year. He was charged with two felonies. Um, I've kind of cut that short. Let me add just one other thing to this, and then I'd like to talk about uh eventually his recovery, if we if we have time for that. When they got him, they took him over to the mental health center, and I raced over, and a policeman was outside, and he said, Let me give you advice. Unless you go in and you tell that psychiatrist he's threatened to kill you, he will not be committed. Uh, he will not be held involuntarily. Uh and I said, Well, he hasn't threatened that. He said, Okay, well, let your conscience be your guide. So I went in and I lied. And that was getting good enough to get him held for 72 hours. Um, and I thought, finally, he's gonna get some help. Well, 24 hours later I got a call from his doctor. Um, the insurance company was saying he didn't need to be in jail, they weren't gonna pay, so the hospital is gonna discharge him. Uh, and I got nowhere until I mentioned that I used to work at the Washington Post and I knew Mike Wallace at CDF. Good for you. And Mike Wallace actually called and said, Why is Pete Early's son being discharged before even the 72 hours? And and they went, Oh, oh, oh. And all of a sudden, my son was allowed to stay for 14 days in that hospital. He he voluntarily committed himself. And that's when I found out he was being charged with two felonies, breaking, entering, and destruction of property. I was so frustrated because the law had said I couldn't intervene and help him, but now wanted to punish him. And I just thought that was outrageous. And then I learned that uh, you know, 365,000 people with mental illnesses are inner jails and prisons. Uh, they stay um much longer than anyone else, they cost more. It's just a nightmare, but those are where we're sending our people. And because of that, I went to Miami Dade for um 10 months. I'd go out for several weeks, then come home. And I followed people through the system to see what happened to them because I wanted to see that before I talked to all the experts. Meanwhile, you know, and I'm sure you all three of you have been through this. Um, Kevin got better, medication really helped him. He did great. And then um he stopped, he was on probation two years, then he stopped taking his meds. And so I thought, you know, God, I'm a pretty smart guy here. Um, I can handle this. So I tried logic and um I divided a legal pad in half, and I said, Oh, look, this is when you're doing well, and oh look, this is when you're not, oh look, this is when you're on meds, and this is when you're not. Well, I found out you can't talk logic to someone who's not thinking logically. So I tried bribery. I said, I'll pay you 50 bucks a week, Kevin, if you take your medication. And he looked at me and said, Dad, I'm not a prostitute. Then I tried duplicity and I ground up his medicine and I put it in his breakfast cereal. And he was suspicious when he got up. Well, why did you fix me cereal? And what we discovered was he was taking depicot, and the hard pink shell floats. And so he knew immediately, and he accused me of trying to poison him. We had a huge fight. I told him, I did the dad card. If you're gonna live here, you have to take and he called me names and I had to drive him to my ex-wife's house. He was so furious, he jumped out of the car, and then I thought, okay, I gotta get professional help. So I called the mobile crisis response team, and I got the dispatcher, and I said, My son's off his meds. Um last time that no, you can't judge him what happened last time. Call us if he's dangerous. Two nights later, my ex-wife was locked in the bathroom calling me frantically. I went over, Kevin chased me out of the house like Rocky, raising his hands. I called the dispatcher and I said, This time I knew what to say, you know. And I said, Please come, my son is violent. And he says, Wait a minute, is he dangerous or violent? And I said, He's violent. Oh, we don't come if he's violent. So the police came and shot him twice with a taser and took him away. So that of course I just broke my heart. And I'm sure, like you, and I only admit this to people who have um have loved ones with serious mental illness. I remember seeing him laying on his belly, hands handcuffed, chained to his feet, officers making fun of him, baiting him on, and me thinking, is this his life? Would it I actually thought it would have been better if he had never been born? Well, let me tell you that, and I know I'm taking a lot of time, but let me tell you uh what eventually happened. After five hospitalizations, six years. Uh, last time he went off his meds, it was uh Thanksgiving, he could tell that I knew he was off his meds. So he bolts out of the house, he jumps in the car and he starts driving my calling, he answers his cell phone, and I say, Where are you going? He says, Heaven, and hangs up. Well, he ran out of gas in North Carolina.

SPEAKER_02 19:21

Wait, when was this last incident?

SPEAKER_05 19:24

This was six years after his first break.

SPEAKER_02 19:26

Okay, so how many years ago is this?

SPEAKER_05 19:30

Actually, uh, we're just celebrating, and I was gonna get to that, and we're just celebrating our 12th year of him doing great.

SPEAKER_01 19:40

Okay, great. So this is six years after, okay.

SPEAKER_05 19:43

Yeah, so we've been through this five hospitalizations, the taser. He's down in North Carolina out of gas, and he calls me and he says, I'm out of gas. And I said, Well, go get some gas. He says, No, Dad, you don't understand. The voices are telling me that if I step out of this car, I'm gonna die. And he was terrified. So I arranged for him to get gas. He drove completely psychotic up I-95, went off the road twice, came home. Well, by that time, I talked to Tom Insel, the former head of the National Institutes of Mental Health, and he told me you have to partner with your with your kid. You can't be the parent, you got to be the partner. Uh that's that's a wonderful phrase. It's pretty damn difficult to do. But I said, What do you want to do? And he said, There's a safe house. So I took him to the safe house, checked him in, left. He got up in the middle nine, took off all his clothes because you know, when you take off your clothes, you're invisible. And he went walking out. Now, this is the part of the story that gives me such hope. A CIT trained officer spotted him. He said, Let's go to the emergency room. Um, you know, get you checked out. And Kevin said, Don't handcuff me. That's when I got tasered. I'm not a criminal. And the guy used his discretion, just put him in the back seat. Then the guy said to him, What kind of music do you like? And Kevin said, Wow. And so he turned a wrap station on. Oh, it gets better. They got to the emergency room, and he Kevin said, Well, this is better than a taxi ride. And he shook his hand, and the officer said, No, I'm gonna stay here with you. And the doctor came in to see him, and the doctor said, Well, it's not dangerous to be walking around naked in Fairfax County. That's not enough to get you on a hold you here because it's he hasn't done anything. And the officer looked at him and he said, Oh, Dr. Smith, okay, I'm gonna look up where you live and I'm gonna drop him off on your front lawn. And all of a sudden he was admitted. And that was the beginning of Kevin's recovery. The key point was Kevin, um Acknowledged finally that he had an illness. And I'm absolutely convinced until you have someone who admits they have an illness, you can't get them, you can't lead them to the water. It's just this ongoing fight. The next thing was the social worker said, you know, you can't, you're too old to live with your dad. Uh he was 30. Um, so she put him in a housing project with two people with schizophrenia. And I thought that was silly. It was the greatest thing because he had self, you know, respect. He was responsible. Then she said, What are you gonna do? I can't do anything. I, you know, I I haven't been ill since she said, No, control the illness, don't let it control you. And he got a job. My college-educated son, high IQ, was the guy at Home Depot, picked up carts, and he got depressed. And his social worker saw him said, You're doing great. And he thought she was mocking him. And then she said, No, come to one of my groups, and he did, and he found out he was doing great, and he liked it. Uh, and she said, I have a perfect program for you, which is peer-to-peer, a person with mental illness helping people. And my son went from someone who needed help to someone who was going to help other people, and that was another step in his recovery. He got certified, and now I got to tell you that uh it's been a year now. My son just graduated with a master's degree in social work, he works full-time as a peer support specialist in Arlington County, and he was on the helping. And I realized that we are so fortunate because it, you know, we finally got the help that enabled him to go forward. And I forgot one last thing, and then I'll shut up here. Um, you know, my son has had seven psychiatrists, only two have ever bothered to learn anything about him except his name and his diagnosis. And that's because they're gonna get paid for a 15-minute med check and shove him out the door. He finally got a doctor who listened to him, treated him as a person, and they worked together to get a medication that had few side effects. And it's it's just getting a pill isn't the answer. And it's so dehumanizing to go see a doctor and they don't care about anything. I mean, he wanted to talk to him about why he felt this way or this, and it, you know, no, I got 15 minutes, just take your pill and leave. That was key too, to have a doctor who cared. So I'm sorry for the length of that. You can edit it out.

SPEAKER_02 24:41

I mean, there's so much in your story, and I do want to point out to the listeners that bipolar is a is a very different illness from schizophrenia. However, when you get to a place of psychosis, psychosis is psychosis. So when your son got to that, and that was in the NPR story today as well. Um, when he got very, very manic and didn't sleep, and you know, in the mania, in the psychosis, it feels like the way schizophrenia feels to us for our sons. Um, I don't know the statistics, but I believe that golden moment when your son realized that he did have an illness that could be managed is a little harder to come by in schizophrenia.

SPEAKER_00 25:28

Absolutely.

SPEAKER_02 25:29

And and frankly, in the hiding in plain sight, I found that piece woefully missing.

SPEAKER_00 25:34

Yeah.

SPEAKER_02 25:35

All of those wonderful, wonderful kids, most of them were kids, talking about their illnesses. I'm so happy for them that they they had the insight and that they found each other and that they found the respect.

SPEAKER_05 25:48

But I understand your frustration.

SPEAKER_02 25:51

Yeah, there was no mention of what about the people who who were who are where your son was before realizing I'm not sick, you're the one who's sick. So that is just but but I I love your story because there are similarities when your son was in psychosis, absolutely. But I just want to make it clear to our listeners that we know that it there are differences as well.

SPEAKER_05 26:14

Absolutely.

SPEAKER_04 26:15

What I want to ask about is the fact that you are a dad compared to a mom. And um, you know, the we always think as mothers, and I've noticed this when I was in my 20 years in the Minnesota state legislature. A woman could this was a joke amongst us women legislators. A woman could say something in the caucus, you know, make some very important points, and then sit down, and the men would just kind of you know talk amongst themselves, and then some man would stand up and say the very same thing. And then all of a sudden everybody's like, oh, what a great idea, what a great idea. And so when you're you as a dad, your you your Kevin's mother was involved when she had him, you you know, we're divorced, but you were working as a team, as I recall from your book, or communicating anyway. But when you know, you could call um uh Mr. Wallace and Tom Menzel, and you had your connections with the Washington Post, and people are afraid of publicity in the mental health system. Right. Um, you know, I've I could say I'm gonna call the attorney general, and I knew him on, you know, I could have could call him on a first name basis when they weren't gonna cover the insurance anymore, and then they would, you know, but that's the dirty little secret about the mental health system, never mind about mothers versus fathers. You know, if you have power, if you can say you're going to expose them, then they do hop to and do different things than they would have if uh if you weren't speaking out. And so you have families who are you know afraid to talk about their child's mental illness or they don't want to ruin their future, and then they don't have that kind of power. But the father voice versus the mother's voice, could you talk about that a little bit? Um, you know, a lot of mothers talk about that a lot. You know, the men can be listened to, but yet we're the ones doing everything. You're a rarity that you're doing all of this. I never hear anything about your ex-wife, you know, in the media or anywhere else. So, what's your perception of the city?

SPEAKER_05 28:25

Well, you know, I've I remarried my I remarried, and my uh Kevin's stepmother has been very, very active in his. Let me make a couple comments. Um, I agree, and I know that some people get frustrated because they say, Well, your son's doing well, and uh it is different. Uh, although Kevin was diagnosed with early schizophrenia, but because these doctors base it on a 10-minute interview, and you know, they just how that person presents. I mean, they imprecise of this. And schizophrenia is a whole different animal. I I understand that. Uh, but before you say that I had it easy, think about this. Uh I knew I knew, no, I'm I'm just saying if you're if you're listening to that.

SPEAKER_02 29:14

Yeah, there were advantages.

SPEAKER_05 29:15

I I knew all these people. I still couldn't get my son helped, and he ended up getting tasered, and he ended up, you know, repeated hospitalizations. It's difficult to get in the system. It's more difficult if you have schizophrenia because they're even more bewildered about how to help someone with schizophrenia because that is such a different disease. I mean, bipolar is a mood disorder, and medication usually works very, very well uh in and working with the different moods. Schizophrenia is a thought disorder, and that is much more difficult to handle. So again, my heart goes out to you uh because of that. I, you know, I don't, it is frustrating to me that so few uh that you often don't see many fathers stepping forward. And I think that's partly because mothers um how to I offend a bunch of people, but I think mothers are used to taking on everything that their children uh have problems with.

SPEAKER_04 30:22

And uh again, that's we're not offended, we think that too.

SPEAKER_05 30:26

Yeah, I mean NAMI was started by mothers, it wasn't fathers running up there, and I think a lot of fathers uh are embarrassed or they feel like they've somehow failed, and you know, I I think that's ridiculous. You know, this is an illness, there's nothing to be ashamed of because you know, people get illnesses. Um, I do think that some of the same things that help my son have been proven to help people with schizophrenia. If you can get a doctor who's knowledgeable about schizophrenia, and that's going to be difficult, and you can get medicines like clozopine and ones that that you know may help if you can get that right cocktail, and you can get that person then into housing, or you know, um I went out to Denver, Colorado. They have a fabulous program out there. Uh it's based on the fountainhouse model where you can have a job, but you may only be able to work for two hours, and then somebody else comes in. And there was a guy there, it was a recycling plan, and the guy there had schizophrenia and was hearing voices, but he was working his two hours. It gave him, you know, I mean, I I don't believe it's possible to get better unless you, you know, you have some something to look forward to in life.

SPEAKER_02 31:55

I absolutely absolutely agree. And and even though the illnesses are somewhat different, I and Mimi has a question next, so I'm gonna make this short. Um I think there's so much that you brought up in your story that is necessary for all of us from the very vulnerable and deep feeling that we've all had, which was what's the point of his life if this is what his life is is going to be? Like I I have felt that. I yeah, in the down moments. And then in the good moments, you're like, Oh, we had another day where we made good memories, you know. So that's there, and the need, the need for services and the need for respect, and the need to be treated like a human being being. So even though your son's illness may be sort of a you know, another branch on the tree, you brought up a lot of important issues. And and in our after Mimi asks her question, we'll bring it to issues and and what we want to talk about. So, Mimi, you're on.

SPEAKER_03 32:54

Okay, well, you know, when I you said something about, you know, you wish more men would step up, and uh, so do we. Um we can't even get our husbands on this program. Yeah, and you notice uh Pete, we have to get the man's perspective by having you on. You don't see any of our husbands here, and that's that's where my question uh lives is I've run into so much um frustration dealing with uh his father, my husband, and he loves his son as much as I do, but there seems to be an inability to look at this and see it. And I just I think a lot of women, a lot of the mothers have the same experience. You go to NAMI meetings, I go give talks, it's always 90% women.

SPEAKER_00 33:52

Yeah.

SPEAKER_03 33:53

What's up, Pete? Why aren't the men around?

SPEAKER_05 33:56

Well, I wish I had a good answer for you. I know many men who are actively involved, including those in NAMI. Um I but I can't answer that. I don't know why, you know, men, a lot of men are embarrassed. I I have no idea. Uh you know, all I know is that this was my son, and um, I wasn't a doctor, uh, I wasn't a professional, I didn't know much about mental health, and uh, but this was my son. I mean, what can you do? It is your son, and I don't necessarily think that's uh uh a feeling that uh has to be divided between females and males. Uh, I mean, if your kid's hurting, you want to step in, and maybe it has to do with empathy, maybe it has to do with knowledge. And I mean, everybody has their own, you know. But I must I want to say something because it the whole thing about schizophrenia, I it is a much more difficult road, I think, than many mental illnesses. Um, but you look at Ellen Sachs, I mean you gotta look at the who wrote The Center Cannot Hold, who, you know, or you look at Fred Freeze, I don't know if you remember him or not, who you I served with him on the National Nami Board who was written off in a back ward. I you know, there are stories out there, and as a parent, I found that I just so badly wanted to hear a story of hope. I mean, when I was in the jail in Miami, I'm going through this horrible, prehistoric, medieval type jail situation. Here's a cell that's built for two people that has six people in it. They're all naked, they're all psychotic. And I I look down, and under one of the bunks, there's a guy eating orange peels all curled up under there. I kept thinking that that's my son. And I I just got so, so down. And then I'd meet somebody like Fred Freeze, or I'd meet somebody in NAMI, and I have my own issues with NAMI, but I'd cling to those stories, and that's why your books that you guys have written, and what I tried to do in my book is say, you know, I think you gotta have hope because if you don't have hope, um, you know you're not gonna fight. No, you're not, you're not gonna fight. And I I'm not naive, everybody's not gonna get better, and we're gonna lose people, but you have to believe that everybody can get better, otherwise, nobody ever will. And we don't know. I, you know, I served on the board of Corporation of Supportive Housing, which finds housing for people with mental illness, and I was out at the Lamp Project in LA, uh, which works with street people. And if you saw the soloist, that's you know, that's that uh that's that program. A guy 20 years homeless on the streets, psychotic, comes in and he finally wants to get help. And you know, so it's there, and they had that opportunity. Now I can't speak to your son's situations, uh, you know, and I I don't, you know, I think it was B.B. Moore Campbell who wrote a book about how she never blamed anybody who also gave up because these, I mean, it's hurt my family, and these are not easy on family dynamics, but I just, you know, you gotta have hope. That's that's all.

SPEAKER_04 37:33

Since you just real quickly, since you dropped that line, I have to follow up. What are your issues with NAMI? I think we all have some, but what are yours?

SPEAKER_05 37:41

Well, you know, we talk about serious mental illness, and traditionally that's been schizophrenia, bipolar disorder, and severe and persistent depression. Well, in the last decade, NAMI has expanded the Big Ten. And they've said, no, we're gonna take it started with uh uh borderline personality, but if you look at the DSM 5, it has 400 different types of mental illness, and quite frankly, it's because psychiatrists want the biggest net possible so they can bring in as many people possible. They don't want to deal with someone with schizophrenia, they want to deal with somebody who's the worried well, you know, somebody who's been divorced, who can't get along, and has good insurance. But how do you define serious mental illness based on all this? And I think, Randy, that was one of your frustrations with uh hiding in plain sight. I mean, they're throwing in eating disorders and everything else. But the problem is when is something a serious mental ill? So if you have a 14-year-old girl who's being bullied and she starts cutting herself and then ends up just taking her life, is that a serious mental illness? Now, I I think that this is also blended into the recovery mode movement, and I think it's frustrating for a lot of parents. Uh, I call it the um beautiful mind syndrome, which is oh, if you just love somebody, uh they will get better and they'll they'll heal themselves. And uh, you know, you're a bad parent if you just don't you just don't love them enough. I mean, I think that's where a lot of the guilt comes in. Absolutely. And it there's something wrong with you. You know, I had a mental health professional tell me, oh, the apple doesn't fall far from the tree. If you look at the parent, you'll see why people have mental health. That's before he knew I had a son with mental health. Right. Yes, but there's that attitude out there. There is that that's still there. And you know, NAMI started as the NAMI mommies, and everybody made a lot of people made fun of them because they were trying to be controlling the schizophrenic mom. I mean, that's that whole thing that mothers cause schizophrenia. And you know, I don't, I'm not an expert on all the subtleties and all that, but I think NAMI has needs to rethink its real dedication to serious mental illness. And I think it also can do the other, but I think it really needs to address that. And I think it also needs to be when you start getting millions of dollars, which it's done, its budget's 17, 18 million dollars now, it's grown tremendously, and it's you know, written, it has NFL players.

SPEAKER_02 40:27

That's the wide net.

SPEAKER_05 40:28

I mean, that's yeah, it has NFL players now, and uh, but what happens then is it dilutes your message. It also makes you reluctant to, for instance, NAMI initially with Fuller Torre was all about assisted outpatient treatment. I mean, that was a big thing they pushed. Now they barely mention it.

SPEAKER_04 40:49

Now they shy away from it. Yeah, and we I'll speak for myself, but maybe the others would chime in. I absolutely agree with you. And I've been on the national board, our state board. I just finished a term as affiliate chair president, and um that is my beef with Nami too.

SPEAKER_05 41:07

And you know, another thing that's happened, and this is where I get people with uh a loved one with schizophrenia get upset with me sometimes, is my son's a peer, and there's a strong feeling, oftentimes with parents with schizophrenia people with schizophrenia, that peers are uh because peer groups are anti-AOT, and that oftentimes a peer is useless, it's not gonna help someone with schizophrenia. I disagree with that in the sense that if you can get a peer like my son, there was a fellow with schizophrenia in his parents' basement over 400 pounds, never came out. My son went over and met with him every day. And just having a friend, I mean, having people with mental illness are the most isolated people in our country, and nobody wants to have anything to do with them. I'm sorry, but that's just the reality. They don't want to date them. I mean, my son, you know, he's he would love to find somebody, but as soon as the mental illness comes up, and he's well known, it's whoa, you know. Yeah, these are some of the frustrations. So just having a friend, you know, one of the things about hiding in plain sight, my son went out to Billings, Montana, where the therapist in that um uh documentary is based, and they had a two-night premiere. And he came back and he told me the same thing I heard from Jesse Close, actually, which was it was just so relaxing to be with people who are ill, who are dealing with this, that you don't have to put on the show. I remember Jesse Close told me she was at McLean Hospital.

SPEAKER_02 42:47

And that's just for our listeners, Jesse is um she is Glenn Close's sister. Uh she suffers from bipolar, I believe. And her son has had schizophrenia as well. So I've met Jesse too, but that's just who we are referring to. And AOT is assisted outpatient treatment, which we've done an episode on. So good.

SPEAKER_05 43:06

So Jesse said that it was just when people came to visit, it was very stressful because she had to act a certain way when she was dealing with her illness. Where just being with somebody who you could let your hair down and you know, you hear a voice or somebody babbling, you're not going to be judgmental because you've done that, you know. But it's hard to develop those relationships.

SPEAKER_04 43:32

I I actually feel that way too, you know, with people with mental illnesses. It's very relaxing if you go to a clubhouse or something. Right.

SPEAKER_05 43:41

And I think you know, there's I think I'm big on fountain house, I'm big on clubhouses. Different programs are, I want everything because you don't know what that person is gonna need or might help them at that time. And um, you know, I think it's a crime that we don't throw money and and well, we throw money, but not necessarily at the right program. Just looking at trying to help a person have uh social connections. Um, because I think people with mental illness want three things. They want a safe place to live, they want someone to love, and they want to have a purpose in their life. And I don't think that's any different than what all of us want. It's just they have more barriers to overcome.

SPEAKER_02 44:30

Right. And treatment helps as well. Good treatment, throw some money at finding a cure, all of that. There's so many issues you brought up, and we only have a few minutes left. So I want to just make sure. No, this is great. I mean, everything I was going to ask you, you've already spoken about. So that is, you know, this isn't a question and answer session, it's a conversation. And so I'm so enjoyed, even though I knew your story, you brought up other things I hadn't thought about. So I want to give Mimi one more chance to just see if there's anything you haven't had a chance to say, and then um then we'll just do a closing question. So, Mimi, anything?

SPEAKER_03 45:06

No, I I really don't have anything. I'm just very interested in hearing what Pete said. It's just how okay.

SPEAKER_02 45:15

So I would just say there's so much in your story that you brought up. Today, Pete early today, Pete and Kevin early today. What are the issues the most pressure pressing issues you're fighting for? And what would you like other dads slash parents, relatives, what would you like people to know?

SPEAKER_05 45:41

Well, there's a lot of specific things I'm fighting for. I'm fighting for better HIPAA laws so that parents can be involved. I'm fighting for families being included when doctors are involved and those kind of technical things, 988, blah, blah, blah. I think the biggest lesson I learned as a dad is when you ask somebody, What do you want for your kids? You say, I want to be happy. That's the one thing you can't do. You can teach your kid good manners, you can teach them money, you can teach them good morals. You cannot make another person happy. And the hardest thing for me as a father was stepping back and realizing I couldn't save my son. That I could do everything I could, but these are serious illnesses, yeah, and it would rip your heart out. But you have to realize your own limitations. There's only so much you can do as a parent, and you can go the second, third, fourth mile, but you have to realize these people, these people you love, like my son, are on their own path. Yeah, and and that's a hard, hard lesson to learn. It's a very hard. And my biggest fear, of course, is that my son's meds will quit working. Uh, and and I'm dealing with a parent right now called me where 20 years all of a sudden the meds aren't working, their kids end up in jail.

SPEAKER_02 47:07

So I I read something, I I think it was somebody's meme on Twitter. It doesn't matter, but she she said that she spoke to a woman who happened to have Alzheimer's, but they were they were taking walks together every morning. And at one point, she asked the woman, I know you were a parent, that you are a parent. What would you say is the most important thing about parenting? And the woman said, I think the greatest gift you can give your children is to make good memories together. And I to me, that was so profound. My son is on a time release medication, and some visits are better than others, depending on the timing of the medication. And when we have a good day, I have learned to say, All right, we made some memories today.

SPEAKER_05 47:55

Good. That's beautiful.

SPEAKER_04 47:57

And then I think it's a big yeah, a big it is a big fear to have the med stop working. And since you read my book, Pete, you know that Jim's clozepine, he got a granulocytosis and had to go off of it. So the meat of my book is those 15 years when he couldn't have a med that really worked, and then he's now back on it. And I'll just say because we you haven't we haven't talked since the book came out, it's almost two and a half years now. He's back on clozapine and he's doing really well. So the fear of meds that work not working, I know that up close and personal. It's the huge fear.

SPEAKER_02 48:33

Parenting is scary whether your kid has a serious mental illness or not. I mean, you can't make anybody happy, really. So it is their journey. And I remember someone telling me that. So I want to make sure you get a chance to tell people your latest book that's coming out, the name of your website, remind us about the documentary, and then we'll close with final words.

SPEAKER_05 48:57

Well, I don't, there's no point. The book that I've just finished is not about mental health. So uh, you know, I do devote about 60% of my time to mental health. I've cut back a little on my blog, but I welcome stories by parents. Um, my blog's at www.peterly.com and the most well read, I've had 240,000 readers. I average about 18,000 a month. I've kind of tapered off and I'm relying more on parents just telling their stories. Um, because I find hearing from other parents and your books just really helped me because you realize you're not alone. And uh, you know, I and I you talk about NAMI. To me, NAMI is are people like you who you go into their community and you see them working hard to change the system. It's not the national office, it's not the lobbyist, it's not to me, it's the individuals. Tom Melsell said to me, we were at in the White House at hiding in plain sight, because he's in that. And he I said to him, you know, I've been doing this 17 years, and some of you guys have been doing it longer than that. I said, I'm getting burned out, and I hate to admit that on your show, but I I feel like we're not moving the needle. Yeah, I feel and and he said, Yeah, it's disappointing. We we we just seem, I mean, the same number of people are in jail as when I started, you know. And then I had a thought. If you change one person, if you help one person, then you've accomplished a lot.

SPEAKER_04 50:38

Throwing that starfish back in the ocean.

SPEAKER_05 50:41

Yeah, I maybe you never know what your words are gonna do. I wrote a piece about psycho donuts, this place in California that I thought was just awful. And the local paper said, Oh, he's getting all been out of shape, they had no sense of humor, blah, blah, blah, blah, blah. Five years later, I got a note from a mother who said her son came in and asked for treatment. And he'd been homeless for years. And when they took emptied his pockets, he had the clipping that I'd written, a piece of it that said, people with males are not to blame. Uh, and he'd circled that over and over. Now, that's not because I'm such a good writer, that's because you never know what your words might do to help someone else, which is why I appreciate being on your podcast. We got to speak out. You got to write books, you gotta speak out.

SPEAKER_02 51:38

Awesome. Well, on that note, I just want to thank you so much, Pete, for sorry, it's not COVID, I swear. I just want to thank you so much, Pete, for joining us today, sharing your story, and for everything you do. We'll keep on fighting the good fight.

SPEAKER_04 51:56

But keep on, keep on, because there aren't enough dad voices. You know, I hope you didn't take away from this that we don't want your voice. We do. And uh, if you can be heard and you're doing good for our sons, then thank you very much. I've always appreciated the fact that you are included in a lot of these national things and you are a male voice because I want somebody, some parent to be listened to.

SPEAKER_02 52:20

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.