NAMI’s Family to Family Program - Mental Illness Education, Support, Strategies and More (Ep. 14)

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.

https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family

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 illness?

Our stories: some increase in awareness of symptoms? Maybe.

Randye’s son Ben: “When I’m not on my meds, I wrestle with symptoms” - First time ever saying that - did he mean it?

Mimi and her son Nick (!)  on ABC news talking about his schizophrenia.

Suzanne’s story as a sibling   and child of someone with mental illness. We aren’t all parents.

What makes NAMI programs different?  -  Peer education approach (lived experience)

What is F2F? (Family-to-Family)? How did it begin? What is covered? How many have been helped?

The rapport   and support that happens and grows in the course of the 8 weeks. 

What changed with the new version (6th edition) released in early 2020

Is it now available online? - COVID and pivot to programs offered online

What other resources does NAMI have for families and people experiencing mental health?

Quotes:

“The lightbulbs went off for me in Family-to-Family...that moment when I really learned ‘oh my god, it’s not my son’s fault’ was so powerful.” - Randye

“My golden nugget was to learn what (my son) Jim still could do. “ - Mindy

“Some people want to talk about how they feel...others are like: give me the information so I can take action. Teach me something so that I have the background, the understanding and the growing empathy.” - Suzanne

Transcript

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SPEAKER_01 0:01

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 Kaye. Today we're going to explore something that had an impact on all three of us, and I guess actually all four of us, including our guests, will learn more in a minute. It's the NAMI Family to Family Program. And for me, support groups were a start, but I was really lost until I took this class. And since my book came out 10 years ago, as I've traveled to talk with groups about our experience, I'm amazed at how many don't know about NAMI at all, or especially about family to family. So today, we all four of us want to make sure that you know about this class, that you know about some of the other things that NAMI offers and get to hear another family story as well. Family to Family is a free course. It's offered by the National Alliance on Mental Illness. Um, Suzanne, is it NAMI or NAMI? What do you official people prefer? Typically we say NAMI. Okay, so that's what I'll say.

SPEAKER_03 1:14

And Randy, I just have to say here in Minnesota, I've noticed it's an East Coast, uh, rest of the country type thing. Um, because and we we in Minnesota say NAMI rhymes with mommy. You know, um Suzanne will tell us that mommies started NAMI. And so that's how we remember it here. But I've noticed that people on the East Coast say NAMI. So I think it's a potato potato thing. So I'm glad to hear from Suzanne what thank you.

SPEAKER_01 1:42

It's officially NAMI and like NAMI mommy, that's what I'll remember. And you know, last week we talked about conservator, conservator. So we're trying to fix everything here. Um, I just wanted to, before we get into your story and Nami story, Mimi and I were talking before you guys came on, and just we we each have kind of interesting updates about our sons. If you're a new listener to the podcast, each of us here have family members with schizophrenia. And um our our sons are all in their 30s and 40s. Suzanne, we'll get to your story in a moment. My son is in group housing, as you guys know, and you can hear the story in my book or in in on my blog. But where he is right now is in housing after a high five and a half month stay in the hospital. And he has never, ever, ever even said he has schizophrenia. So that's common. We're trying to get his social security disability back, and the psychiatrist is asking him questions, a psychiatrist who doesn't know him at all because he's brand new. So my son, Ben, is the name we use, called me today and said, Mom, I don't know if I answered the questions right. And I said, Well, what did they ask you? Because they're trying to determine if he has a disability. We all know he does, but uh they asked him if he can do a simple task. And he says, Of course I can do a simple task. I said, Yes. Um what did you say though about when you can't do a simple task? He said, Well, what I said was, when I'm not on my meds, I wrestle with symptoms. And he has never in the 20 years since his diagnosis even said that. He also said they asked me about if I talk to myself, and he said, I said, I do sometimes, but when I'm at work, I keep it under control. At which point I said, You realize that when you were working, you were taking your meds every day, right? Yeah, yeah, yeah, yeah. I don't want to talk about that. So that's as far as it went. And of course, I called the team, and he never said that at the meeting. So he told me that he told them that, but he didn't tell them that. But I just kept saying, you know, I guess if that's what you remember saying, that's fantastic. Like I kept it. So I don't know what's going to happen, but I just thought that was a big step for him to even say to me when I'm not on my meds, I wrestle with symptoms. Only I don't know why he didn't actually tell the psychiatrist that. So that's a bit of our update. Mimi and her son were on the news last night. Can you fill us in?

SPEAKER_02 4:16

Wow. Yeah, it's very exciting. I was contacted by a producer at ABC News who had, I guess, read the article about my book in Huffington Post. And they were doing a piece about mental illness, but specifically focused on the interactions with the police and things like that. But they wanted to include in this piece a portrait or you know, a picture of a family. So they came and they interviewed us yesterday. They were here all day long. Both of you, you and Nick. Me and Nick. And you know, Nick has never spoken publicly to anybody. Nick also only in the last year or two will even say the word schizophrenia. He sat down with this guy, his name was Trevor Alt. He's this handsome young uh newscaster for ABC News. He sat down with him on our front porch, and I sat there dumbfounded and listened to Nick talk about his symptoms, his medication, the amount of medication he takes, how his art helps him in his schizophrenia. I mean, Craig and I were looking at each other, like, who is this kid? It was really scary.

SPEAKER_01 5:28

Your boy, come back for a minute.

SPEAKER_02 5:30

Well, you know, it's the cause of pain. It's the cause of pain. You know, a year ago he wouldn't even have a conversation with a stranger.

unknown 5:38

Wow.

SPEAKER_02 5:38

So it's pretty, pretty great. And I'll let you know, it's it's on the ABC streaming news platform. So I will send you guys the link and maybe we can put it out there.

SPEAKER_01 5:48

Absolutely, we'll put it in the description. Please do. That's fantastic. So that's a bit uh Mindy. Unless you have anything earth-shattering updates to share, should we just get into it? Or nothing like that. So why not just get into it?

SPEAKER_03 6:02

Okay. Have Mimi's or yours.

SPEAKER_01 6:04

So I want to welcome our guest. She is now the director of the national education programs at NAMI, and welcome, Suzanne Robinson.

SPEAKER_00 6:13

Thank you.

SPEAKER_01 6:14

Can you start by telling us your story and how you got involved with NAMI in the first place?

SPEAKER_00 6:19

Sure. As many of us, I got involved first as a volunteer, started out as a family-to-family teacher, trained way back in 1998. And then I ended up taking a job with NAMI, Ohio, because I'm based here in Columbus, Ohio. So I was there for about 14 years, then went to the national office in 2013 to work on curriculum development, that sort of thing. But what brought me to NAMI in the very beginning is the fact that I'm a family member myself. My mom has bipolar disorder and my brother has obsessive compulsive disorder. And for both of them, they're we're very fortunate that they both have had um been pretty responsive to treatment once they found the right one. It's worked pretty well. But there, that that, as we all know, is a journey finding the right thing. And I think for me, because I'm I will tell you, I'm 54 years old. So for me, it's been my whole life. So it's because my mother, it's my mother, so that's 54 years of experience. And then my brother is, he's a little younger than I am, he's 51, but he was diagnosed with what we've what they first thought was depression when he was about seven years old. But we look back now and realize it was probably always OCD. He was an anxious little guy, had a hard time in school, got picked on a lot, was kind of small for his size, all these things. But how many years between you and your brother? How many years between you? Two years, 10 months. So just under three years.

SPEAKER_01 7:38

Okay.

SPEAKER_00 7:39

So he's a little younger than I am. So I'm in an interesting sandwich with my mom and my brother. But in my family, I think one of the things that was most helpful to me is my mom and my dad were both very open about what my mom was experiencing. So they always said, you know, mommy's having a hard day today, she's very angry, but don't, you know, it's not your fault. And I think the way they talked about it, and because in my family it's very much dinner table talk, um, my brother and I, we believed what my mom said. And I have endless stories that are kind of amusing. Some are kind of sad, some are difficult, because certainly when you are um, I think it was about seven or eight years old, which would have made my brother five or six, when my mom was hospitalized for the first time. She didn't have her official diagnosis till she was into her 30s, but she had things happening very early on. I mean, her parents took her to a psychiatrist when she was three and a half. She is 83 years old. So that's way in the beginning. But they just didn't know what to make of some of the behavior she had and the responses she had and some of her, just what was happening with her. So she um managed to navigate through life. Um, met my father, they settled in Columbus, Ohio when my dad took a job as a professor. But that meant that moving to Ohio, she didn't have a support network around her. So I think that's when it got a little more challenging for her. So she was hospitalized, as I say, when I was a little kid. And I think that's not an easy thing because back in those days, you know, families weren't didn't come, certainly children did not go to psychiatric facilities to visit their parents who were hospitalized. So I think that was a hard thing. But um, my mom is she's an amazing woman, very tough, very courageous. She has, of all things, a master's in social work. So I always found that to be incredibly amusing because anyone who's working on treatment with her, she read all the same books they did and likely got better grades than she did. They did too. So she could kind of, hey, you know, she knows what what the game is, but she's also very much tuned into um what it means when she's not getting the treatment and how she feels when she's not getting the treatment and how her interactions work with other people. So for her, she's very much it works for her, she likes it. She's a retired special education middle school teacher, um, married to my dad for 52 years. So um a very rich and wonderful life, but certainly not one without struggle. And I think the same is true for my brother. He's got his um, he was an art student and he does design, graphic design and illustration, and he has children of his own. But it's we're we're very fortunate because we had the really the privilege and the access to treatment. And then we were fortunate that both of them were relatively responsive to treatment and when things didn't work, kind of try new paths. But I think that there is um, you know, everyone's story is different, and how people respond, I think, to treatments and what is accessible, what works for them is so varied. So again, serious mental illness, but very fortunate that a lot of very responsive to the treatments and able to find treatment that worked.

SPEAKER_01 10:41

Right. And and as we've mentioned on this podcast, and it's right on our title, Schizophrenia, Three Moms in the Trenches, we are kind of representing the parental point of view and specifically schizophrenia, which can be much harder than the mood disorders. However, it part we are trying to bring all kinds of stories. So, you know, you as a child of someone with bipolar and the sister, one of these days maybe we'll interview all our daughters about what it was like for them and talk about the sibling experience. But all of that, and I learned all this because I took family to family. So tell us a bit, just a bit of a background about Nami for someone who doesn't know what it is. And then I'm just going to turn it over to Mindy or Mimi. This is very loose here, and just maybe they'll tell you a little bit about what family to family meant to them and ask some more questions. So, you know, how did it all start?

SPEAKER_00 11:30

Well, it it goes way back, and of all things, it's two moms at a kitchen table, two mothers of young men with schizophrenia, who said, surely there is more to life than this, than medication management, group homes with no sort of social anything. And I thought these two young men deserved more than that. They were frustrated. They are what we call, just like uh Mindy was saying, the NAMI mommies. They are the original NAMI mommies. And so much of what NAMI was formed on is based on the energy of these NAMI mommies who really just sort of made, kind of started to raise their voices and beget built something in Madison, Wisconsin that became a national movement. These groups of families found each other all over the country, had their very first conference in Madison, Wisconsin. And so NAMI as a formal entity came to be around 1979, so about 41 years before social media made it easy, right?

SPEAKER_01 12:29

Darn right. Yes.

SPEAKER_00 12:30

And I think even the same thing with all of our courses, including family to family, all these things were put together. This was a gathering of multiple pieces of information and putting them at one place because certainly we could all there was there was one, yeah.

SPEAKER_03 12:42

I would just like to insert here. There were a couple of mothers that went to that Madison meeting we've learned in Minnesota that had a group before NAMI that they called Fed Up. And then it be they, you know, went and worked on the real NAMI, but that was their name, and I think that's appropriate too.

SPEAKER_00 13:00

And that's the story that's all over the country. There were these pockets of individuals saying, This is not okay, and really, and then finding each other, like you say, pre-social media and creating this movement. So the movement started more as a as um family members, but it has since expanded. So it includes a large part is um individuals who experience mental health conditions, whether they have a diagnosis or not. So we have programs that are run by and for people who um have these conditions and diagnoses as well, and also providers who have interest in this. And so there's a lot of different opportunities to get involved with NAMI, but also to get support and education from NAMI. So whether it's the classes, support groups, presentations, all very helpful. But one of the core elements for everything NAMI is the fact that all that we do is peer-based, meaning it's people who have the lived experience working with others who have that lived experience. So what qualifies me to teach family to family is certainly that I took the course, I got the training. And while I do have a master's in social work, that is not what qualifies me. It's my lived experience. So the lived experience is such a key element, and it's really the heart of everything that NAMI does is that notion of that peer experience is the most important thing. So for folks who have teached the class, like like Randy and I do, it's that we are, we've walked it, we've lived it, it's part of our journey. And it's what makes for the participants who come to our classes, part of what we do as teachers is share a huge part of ourselves and our stories to make that feel um more comfortable for people. They then share their stories. People have this common language. One of the things I really love about all of our education programs is the fact that when you come into the room and sit down, I get a family-to-family class, somebody says, Oh, my, you know, my sister has schizophrenia. I'm like, my brother has OCD. Come sit with me, let's have a conversation. And you can speak in shorthand. The shame kind of goes away. Because I think, especially, and I think for the three of you, I would not be surprised that because I know it's a challenge for my mother too, with my brother having a mental health condition. First of all, for her, she wanted it to stop with her and it didn't. And that's a hard thing for her to accept. But I also think for parents, they often feel this extra burden because people look at them and say, You and your parenting, what did you do wrong? And it's one of those things that, while ridiculous, it's something that can get internalized pretty easily. And I think the same that that happens for parents, it can happen for partners and spouses too, where you think, I married this person, I connected with this person, we were to be partners, and yet I feel like I'm parenting someone who's in my own age range. And it can also be challenging than for siblings too, where you're you kind of can miss out. I'm really fortunate, I'm very close to my brother, but I know it can be challenging if he's symptomatic, then we our conversation becomes something very different, where it's more of a can be a caretaker role or a role of concern, which is very important, but it also changes the dynamics. And I think that's part of the problem and challenge with all of this. But again, the core elements of family-to-family is that peer notion. And we focus on education, support, um, and awareness are the key things and advocacy too. So helping um people find their voice so that they can get the help that they need or the help that they want their um loved ones to be able to access. So I think that's really the the most important part is that kind of peer connection. More important than all the manuals and everything else we can get is to connect people with each other.

SPEAKER_01 16:38

I think is really I agree, but I will say that for me, for me, family to family was much more empowering and helpful than the support group, which is peer-based as well. Because for me, I needed that education, I needed that format, and we'll talk about this in a second. But um, when I took family to family, it was 12 weeks. Same for you, Mimi. Yeah. It was a 12 week. Now it's eight weeks, and we'll talk about that in a second. And I think it's great, it's been condensed in a very good way. But the light bulbs went off for me in Family to Family because it isn't just peers sharing their experience, they are guided by Joyce Berlin's very well-researched curriculum, a lot of which is read out loud by the leaders or the participants to make sure they get accurate information and update it every year. So the moment for me when I was like, that's what schizophrenia is? I mean, I had read it in a book, but to learn it in a class, I went, oh my God, it's not my son's fault. Like that's what family to family did for me. And Mimi, yeah.

SPEAKER_02 17:53

Yeah, can I just add to that 100% what you're saying? And for someone like me, now I would go to a support group. But back then, when all that was starting, I was I'm not a support group kind of person. And I wasn't interested in it because to me it was like, oh, I don't want to sit around and whine with a bunch of other people. Um, but when I heard about family to family, then that I was interested in. And I, by serendipity, heard about this and ended up in family to family right at the beginning of all of this, and it changed everything because all of a sudden I had tools and I had understanding and I had an idea of what to do and what not to do, and it was 12 weeks, and I mean I could have kept going for a year. It it really, really made a difference. And I think that it brings in people who maybe wouldn't go to a support group.

SPEAKER_03 18:46

And for me, my grandmother had schizophrenia, so I did minor in psychology for both my BA and my MA. So I had a lot of the fact facts, and I certainly knew what schizophrenia was. But for me, um, the biggest part was learning the new things that hadn't been there. You know, I had gotten all my information 20 years before Jim got sick. And so the first class that I remember, the assignment that I just took away as the most important thing that I got that I still use from family to family, was the chart and the discussion of what does the person who has mental illness, what can't they help, and what can they be accountable for? Because I think our first reaction is just to kind of protect and, you know, think they can't do anything. And that is so wrong. And so Nami's family-to-family class, my golden nugget was to learn what Jim still could do. And that really informed our whole philosophy about him. He could still do a heck of a lot and he could he could work, and he we wouldn't buy that that he should just never do anything productive because he had couldn't have stress, you know. But Nami taught me to stand up better for my son. And then I actually want to hear why we went to eight weeks because I loved, we all mourned when the classes were over. We didn't want to stop. You know, it was a small group, 18 or 20 people. One of the women that was in that group is still one of my best friends. We're both on our county adult mental health advisory council. We took a trip to Mexico and she's actually a whole chapter in my book, and she shows up other places. She came to Jim's mental health court graduation and so forth, all because we met her there. And she's not someone, like Mimi said, to sit around and moan about. We laugh and we have fun and we talk about what our sons can do because we became um educated. So I I so love that curriculum. And I was so glad I got to meet Joyce Berland when I was um on the National NAMI board. She was still the staff person. Are you Joyce Berland now, Suzanne, or do you have a different title?

SPEAKER_01 21:08

So let's explain who Joyce Berland is for someone who might not know. Yeah, I'll let you do that, Suzanne.

SPEAKER_00 21:13

Happy to do that. Yeah. Joyce Berland is actually really the ultimate NAMI mommy. She is the person who wrote the family-to-family curriculum, but she's also someone who has her sister had schizophrenia, her daughter has schizophrenia. And for her, she very much felt that same kind of thing that I think we all have, where this is not acceptable. It's not okay that people are treated this way. And she got so irritated that she went and got her PhD in clinical psychology and really sort of because she wanted to be at the table to make that noise. And she put together this curriculum, which really she had the foresight to think about trauma informed care before it had a name. So she really looked at the impact that trauma has on all levels the individual who's experiencing the symptoms, their family, and all of that, and created this amazing curriculum that. At the time, it was 12 sessions long, and again, created way back when 1991, it was gifted to the national office NAMI in 1997 when it took its new name of family to family. So it's been around for quite some time. And it and just to touch on something you were saying earlier, I completely agree with you, Randy, because I think that different people want something different in the moment. Some people would like to go and talk about how they feel about this and understand that part. Other people like, give me the information so I can take action. And I think what we have can appeal to different people at different points. But there are plenty of people who are like, I'm never going to be the feelings person. I feel something about this, but I will talk to my own people about that. I want to know more. What action can I take? So teach me something and give me the information. So I have the background, the understanding, and the growing empathy. And I think that's a key part of this. But with this shift from 12 weeks to eight weeks, a lot of the core elements remain because the evidence that the 12-week version is an evidence-based program. There's research into the efficacy of that. A lot of those core elements that got us the evidence-based status stayed with the eight-session version, problem solving, communication, different relative groups. We talk about what does it mean when I'm a sibling and I'm experiencing this? What does it mean when I'm the adult child of someone? What does it mean when I'm the spouse? What does it mean when I'm the parent, the grandparent, whatever it is? So we still do those core things that I think people found profoundly and intensely moving and life-changing. And certainly the chart that you talk about, the emotional, the various emotional resistance, the stages of emotional for us and for our loved ones.

SPEAKER_01 23:39

Yeah.

SPEAKER_00 23:40

Those pieces are all still there. Some of the elements that were removed, we had we used to have a class that was about advocacy as a standalone class. And now we've kind of inserted advocacy across the course because back in the day when we didn't have the great Google and other ways to kind of find information immediately, and we didn't have the movement that we have now. We have a very much more active group of people because they, you know, they join the NAMI, they become a board member, they get, they kind of do these other things. In the old advocacy class, we had people sort of start their own committees, and now with working boards, that made less sense. We did some combining of information. We have some other courses at NAMI that are six sessions in length. There's one called NAMI Basics for Parents of Young Children. There's one called NAMI Home Front, also six sessions, which is for military veteran families. And we sort of looked at between a 12-week length and a six-week length, what might make sense. So we landed on eight weeks kind of randomly, but eight weeks just because that seemed like a decent balance. Because you're right, there are people who absolutely say they start at 12 weeks or eight weeks and they say, This is so long, I'll never get through it. And then as they come closer to the end, they're thinking, what am I going to do with my don't end, don't end. Right. And we and I think one of the things we have found in our modern times where people are pulled in so many different directions, that um having it a little shorter than 12 weeks seemed to make some sense. So again, those core elements remain, but it is a little, it's still two and a half hours each session, but it's now just eight, eight sessions total instead of 12. So that there are opportunities for people to sort of continue by maybe joining a support group or doing other things. And we certainly have groups who say, hey, let's do a class nine because we want to bring in some speakers about this topic. We still bring in a speaker too to uh talk to the class members about um somebody who has a lived experience with an illness and a diagnosis to share their story too.

SPEAKER_01 25:44

I have to say, and I want to share that I obviously all of us took it as a 12-week class, and and there is a certain amount of bonding that is never forced, but begins to happen because everybody's learning together. In fact, and I don't think I'm giving away a big secret here, I was amazed that nobody tells their story until week three.

SPEAKER_00 26:06

Right.

SPEAKER_01 26:06

And I was like, Well, uh, I need to whine and complain. Like, like I need to tell my story. And but you know what? The way stories were told at the end of week three, after everybody had three weeks to get to know each other and care about each other, and everybody had gained some knowledge and facts to put their story in perspective, it meant a lot more. I learned after I took it and taught it probably 20 times how beautifully constructed it really was. I thought, oh, she didn't know where to put this, so she stuck it in week three. And I'm like, no, she's, you know, just PhD, she knows what she's doing. So it it really is beautifully constructed and how so many of the facts are given at the beginning with time to talk about feelings, but you don't really get deep into the weeds of the feelings until week six or seven or eight. And and it still happens. So I have taught the eight-week version, I have to say, and it works beautifully.

SPEAKER_00 27:02

And we still do stories at three three weeks. So you give people that time to build some rapport and some trust and to understand that these the leaders of the program, the teachers, are going to share just as much of themselves as they're gonna ask of a participant. So you kind of find that balance and that back and forth too.

SPEAKER_01 27:20

Right. So we have an eight-week. Can we talk a bit? Believe it or not, we're almost at 30 minutes. So I I I want to, and we can go a few minutes over, it's fine. I'd like to ask you about COVID. And and what has happened since 2020. Now, in the past, it was like you you had to rent a room and get people to come to the room and worry about weather and snow and all those things. Obviously, COVID came and we all were in lockdown. So, how did NAMI uh NAMI, sorry, adjust to that? And what is happening in obviously we've gone virtual, but how's that going?

SPEAKER_00 28:02

It's actually gone pretty well, unexpectedly. So it could, as everyone has had happen with COVID, it's the great pivot, where we all had to pivot this way and that way. It changed how we all celebrated holidays in 2020. It's all these things. But what we ended up doing for the education team where I'm based, um, we came up with some guides to help people make that shift. What kinds of things should we think about in terms of maintaining confidentiality and the sense of comfort and safety and camaraderie that happens in an in-person class? And one of the things that I think is really interesting about having to do things on Zoom or otherwise is that all of a sudden we have a window literally into somebody's home. And in some ways, it's created this different type of intimacy because maybe the person who the the if you're coming to a course because of your you've got concerns about your partner or husband or you know, wife, whatever, maybe that person's in the other room. And it does create this interesting dynamic, it creates challenges there too, because it means it's all about the headphones and maybe you can't say something in a certain moment. But I think um it has been the wonder of it, the benefit of it is it has allowed, I know in in many cases, it's allowed families to take the class at the same time, despite the fact that they're across the country from each other. So they're they're meeting on behalf of the same family member, but they're taking a class, they're all joining the class in Idaho because that's the time zone that works the best. So, in that sense, it's been really kind of amazing. It's also allowed us to meet people and engage with people who otherwise wouldn't have been able to take a class because now all of a sudden they're not wedded to 6:30 on a Tuesday evening and my time zone doesn't work. But three time zones over, hey, the class in Hawaii or whatever works great for my timing. So, in that sense, it's been really wonderful. But I'm also painfully aware of the fact that everyone doesn't have that opportunity with um internet and bandwidth and all those things. So there's a group of people who kind of been sliced away, and we've got to be able to probably have an opportunity to reach them once things settle down again. But I really do believe that um, I don't know that anyone, NAMI included, is completely going to go back to only one way of doing this. I think this is gonna continue to be an opportunity for us, especially in states that we call frontier, like your Wyoming's or your Nevadas, where only on the West Coast are there highly populated areas. And now we can reach people who are way out on reservations or just in very rural areas in a way we never could before. So I think there's there's great pain, obviously, with COVID, but there's also the concerns that have COVID has raised of isolation. So for people who already had diagnoses or were already dealing with pretty serious things and the isolation that came with that, but also people who are very new to this mental health challenge arena and are finding NAMI for the very first time. So certainly we have a helpline. It's not a hotline, it's not 24-7, but it's a helpline. And of course, calls and reaching out to that have spiked tremendously. We have um information on our website, nami.org, if folks remember nothing else, other than nami.org, n-a-mi.org. We have COVID resources that um direct people to resources from all over the country. We have resources in English and Spanish that are COVID-specific, but also just general mental health information. So I think that people have um traffic to our website has grown tremendously in this time. So I think there's a lot out there that can kind of meet people where they are. So again, if you're interested in a support group, there's that. If you're interested in the class, like family to family, there's that. If you just want to be able to read information, there's that. If you want to speak to someone about a very specific issue, there's the helpline and other resources that are beyond just NAMI. So we connect people to those resources as well.

SPEAKER_03 31:55

Suzanne, could you tell us a little bit about you? Mentioned we can now reach people in rural areas and so forth. What kind of saturation do we have with the number of families that have the potential to take family to family? How many would you say have actually had a chance to take it?

SPEAKER_00 32:13

I know that our numbers and probably pretty undercounted. We've got to be nearing about the um half a million mark of total graduates. But we also are aware that sometimes people are so focused on offering the course that they're not necessarily giving us data. We guess that we're probably getting about 60 to 65% of data in terms of the number of people who complete the class. So it is a large number of people. It's reached a huge number of people. But again, if we talk about the numbers, the accepted numbers around mental health conditions are about one in five adults experiencing a mental health condition in a given year. One in six youth ages, I believe it's 10 to 17. So that's a lot of people who have mental health conditions in their families or know someone who's been um is dealing with a condition or symptoms, um, whether it's on the support side or the having the diagnosis themselves. So I think that there is plenty of work for all of us to do and more people to reach. So um, because I think that again, while the numbers and contacts to the NAMI website, the traffic has increased, there are more people who still don't know anything about it. So it's a lot about volunteers and people like us reaching out and letting providers know, hey, recommend this. And teachers providers, yeah.

SPEAKER_01 33:31

And having teachers trained. I I might point out that this course is free and that the teachers are volunteers.

SPEAKER_00 33:38

Yes.

SPEAKER_01 33:39

So when we teach it, we we we take a training and usually we don't have to pay for the training, so that's nice. But uh we we teach two and a half, three hours a night for eight weeks, used to be 12 to help others get the help we got. I I'm curious before we close about I've I've shared a bit about what was so powerful for me about family to family, and of course, having taught it so many times, every time I teach it, my son's in a different phase of crisis. So there's always more to learn. And you can always take it again, by the way, if you ever need to take it again. I think two of the most powerful things for me was, as I said, recognizing that this was an illness, just getting all the facts where I could come to that own conclusion myself and that it wasn't my son's fault. I got a clear idea of what to do in a crisis, which I never knew before. And I learned to have empathy for what it must be like for my son. And believe me, that made me cry and still does, but that was powerful. Mindy or Mimi, what was do you remember anything that really hit you in that chorus?

SPEAKER_02 34:48

Is well, you really nailed it for me in the I don't want to talk about what they exactly do in the group, but there's an exercise where you get to experience what it's like for your loved one with schizophrenia. And I'll never forget that. I mean, I wrote about it in my book, even it just and to this day, and I've been, you know, we've been doing this for 20 years now. There are times when I have to just slow down, remember what that was like, so that I can deal with him because it allowed me to understand how he was perceiving the world world, and that was profound.

SPEAKER_03 35:28

And I already shared what was most impactful for me. So I'm gonna say um my daughter took the class as well. She lives in Washington, D.C., and she drove quite a ways into Virginia, halfway down the state, 12 weeks after her work day, to take this class. So she was very dedicated. And her takeaway, um, which I'm not sure was is totally healthy for her, but it but it's helpful, it's helpful for us parents. Um, her takeaway was, I think she was in with a lot of parents, and there she was the sister. Uh, her takeaway was how hard this was for parents. And so she's be she immediately became a caregiver, you know, for Roger and me and um what we were going through and kind of subjugated what she was going through. She does this to this day, and it's helped for her to then be our son's trustee when we die, and she's when we took a vacation once out of the country, she took over and called wherever he was and checked up on him. So um, we became more partners in this because she took not uh family to family.

SPEAKER_01 36:36

That's that's huge. So I would mention again that we've been in the trenches many years, and if you're listening and you're just starting on this journey, or you have a school age child and you feel confused and you don't know where to begin or what to do, or that there's something in NAMI for you. So I'm gonna let Suzanne give any final words. What should somebody do if if they need help? What does NAMI have for them? And how do they find out about family to family? Either it used to be had to be in your town, but now it doesn't. So what how what are the steps they need to take?

SPEAKER_00 37:16

Probably again, the easiest thing would be to go to the website. There's a feature on the website where you can put your state in, find where your state office is, and find the affiliates within your state. In Ohio, where I am, we've got a Nami, Ohio, and then there are about 35 affiliates all around the state. So if you want to try and find something that's local, because one of the benefits of going to the local class in your community or in your general area is they're going to talk about a lot of the resources that are local because other people in the class will be local. But if that's not an option, there's still the ability to find classes elsewhere and join those. So I think that may be the easiest way, and you can explore what's available in terms of the different types of classes or presentations or support groups by kind of looking at the website, finding out what they are. There are specialty groups, there are groups that are very general in terms of support groups. So there's something for everyone, I would say. So there are a lot of resources for um all folks, no matter what point they are in at the in their journey. And I think one of the other things for me personally with the course was the communication strategies and reminding myself to use I statements was a big one and a reflective language as opposed to assuming that I understood what my mom or my brother was saying to me or asking of me. I would make a lot of leaps and bounds and to kind of slow myself down and really listen made an enormous difference. So that was a big part for me.

SPEAKER_01 38:37

Still does for me. So it's nami.org, n-a-mi.org. You may probably have a separate website in your state as well, but nami.org will link you to that. And family to family would be found under usually the education tab or support and education. Look for classes. You'll find it, just dig down. And if if there's no convenient one in your state at the moment, they're all virtual, so you can check out other places as well. Suzanne, thank you so much for joining us today. It's it's been a pleasure, and and thank you for letting us know more about Nami.

SPEAKER_03 39:12

Thank you for you for what you do. NAMI is the best.

SPEAKER_01 39:17

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.