A Father's Insight: Supporting a Son with Schizophrenia

When his son was diagnosed at the age of 19, this father embarked on a relentless search for solutions. But the road ahead was filled with uncertainty and challenges. 

After many years without a solution, he found Family and Children's Services NAVIGATE program – the key that unlocked a brighter future for his son. And with a clear diagnosis and access to specialized support, a transformation happened.

Join us for this special episode as a father bravely tells his story and provides valuable insights.

We've chosen to record this episode anonymously because we want to create a safe space for sharing honest experiences.

Check out these other complimentary episodes: 
Episode 11: FCS's supported employment program is tailored for individuals grappling with serious mental illnesses such as schizophrenia. 

Episode 12: Learn more about FCS's NAVIGATE program which focuses on early intervention for individuals encountering first-episode psychosis. 

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Thank you once again for accompanying us on the journey. Until next time!

Transcript

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Welcome to OK State of Mind a podcast by Family and Children's Services based in Tulsa, Oklahoma. This podcast seeks to satisfy inquisitive minds eager to delve into the realm of mental health and overall well being. Join us on a journey to gain insights into the intricacies of the human psyche, drawing inspiration from stories of resilience and hope. Together, we'll unravel the fascinating science, the invisibilia, that underpins our behaviors, Shedding light on the whys behind our behavior and our overall mental health, our goal is to empower, educate, and inspire you with actionable insights that you can immediately use in pursuing your own mental well being. In our last two episodes, we spoke to leaders from FCS's supported employment program tailored for individuals grappling with serious mental illnesses such as schizophrenia. And we also spoke with FCS's Navigate program, which focuses on early intervention for individuals encountering first episode psychosis. Navigate aims to deliver personalized care that fosters recovery and long term wellness. These two episodes can provide our listeners with background information about today's conversation with a very special guest, a father who has walked a difficult path of navigating his son's journey with schizophrenia. When his son was diagnosed at the age of 19, this father embarked on a relentless search for solutions, but the road ahead was filled with uncertainty and challenges. After many years without a solution, he found Family and Children's Services Navigate program. For this father, Navigate became the key that unlocked a brighter future for his son. And with a clear diagnosis and access to specialized support, a transformation happened. I'm your host, Dee Harris, and today we'll delve into his journey exploring the highs and lows, and uncovering the power of perseverance and the importance of finding the right support system. So we've chosen to record this episode anonymously because we want to create a safe space for sharing honest experiences. Welcome to Okay State of Mind. Thank you. Glad to be here and talk with you today. Yeah, so great to have you. So first of all, tell me just a little bit about your journey into this space of not really understanding what was happening with your son? You know when we got the diagnosis, my son was about 19 and a lot of lights turned on and dots connected for symptoms that went back to really elementary school that presented as maybe ADHD, Maybe just an angsty preteen who, you know, didn't want to do what his parents said, you know, a lot of those things that just look like other things, things that might not be as severe or as challenging. And so, we began, I think as early as maybe fourth grade. talking with school counselors and teachers, with talking with therapeutic counselors, with trying different types of medicine. I think ADHD was the first condition that we sought meds for. And went through a series of different therapists and a series of different psychiatrists for medication. And nothing really worked because we probably, well, we were not treating the underlying issue. So although, schizophrenia typically sets in in the late teens, early twenties I just wonder if some of those things were earlier for him or if, it's a spectrum, you know, it's never just an on switch. It's, when do things start presenting? And for him, it was very early on. So. We, at some point I think he had finished high school and it was really starting to hit him, the illness. And he just got to a point where he said, I'm, I'm tired of feeling like this. And, he sought help and he came to his mom and I and said, you know, I'm ready to do something different. And so we went and got an evaluation at a, local mental health organization and found out that it looked like it was probably schizophrenia. They initially had someone who ruled him out for that and we sort of found out later that, maybe the symptoms weren't as strong, whatever the case may be. And so another year or so went by. And I reached out to Family and Children's Services and said I don't know exactly what he's got. He's, was considered for schizophrenia, considered for bipolar, sort of a host of different things. And found out that there is this wonderful program here called Navigate that's a, tremendous wraparound. services program and for him, it was the thing that made all the difference. It was the key. Having, an actual diagnosis and then having a program designed for young people with schizophrenia just like him started turning things around. So that's sort of it in a nutshell. Navigate has been part of the FCS. group of programs since 2016, it is a first episode psychosis program. So it's for like ages 16 to 30 for individuals that experience first episode because the way I understand it, is that if you can diagnose it early enough, you can Treat it to the degree that you can live with the symptoms or manage the symptoms. Because there's a lot of mental health disorders, that are treatable and curable in a way, but schizophrenia is not one. Right. He'll have this forever. And so his goal and our goal is to ask the question and then move towards what does his best life look like for him. And I'll tell you the short answer for those who are either dealing with this or wondering about it or maybe know someone. schizophrenia is not what you necessarily see in the movies. If it's untreated it can be a very unpleasant experience for that person and their loved ones. My son today on medication consistently and in therapy. If he didn't know he had schizophrenia, I'm not sure that you'd know. Right. So. Well I'm a parent and I know how difficult and emotional it is to have a child that might be sick or feeling unwell or you don't understand the symptoms or you get a misdiagnosis. I know that must have been a rollercoaster for you and your family. I'd like for you to talk a little bit about that piece of it, how you finally got there from fourth grade on and then got help and what did that look like for you personally? Well, Thinking back if it was around fourth grade and then diagnosed at age 19, you're looking at roughly a 10 year period or so and at some point in probably middle school, it was a level of frustration. Particularly high school where it was really starting to set in a little bit more, probably. Where you're just sort of at your wits end as a parent, but you don't know what it is. And so a lot of what schizophrenia, you know, one of the symptoms or parts of it is that people with this condition have a hard time seeing the big picture. So in other words, if I don't do this, then here's the consequences if I don't study or if I don't, you know, whatever it is. And so as an example, I think one of the coping mechanisms he developed early on was just flat out lying about things because he constantly had authority figures parents, teachers, coaches, whatever it may be, saying you didn't do something you were supposed to do. And so, again, I said before a lot of this presented as just an angsty teen who had issues with authority. And for us, You could just pull your hair out with frustration dealing with some of this, dealing with emotional outbursts and dealing with, a kid who was in the gifted and talented program, but then would have an F on an assignment where you're just, you know, he's intellectually capable of better but for some reason didn't do what was needed to be done. And so, it's hard to get to a place where you just give up on a child. And we didn't get there, but there were many times where we felt close. And I think, during those teenage years, a lot of what I thought was he's going to grow out of it. He's going to grow out of it. We're going to find, you know, just keep trying, keep trying switch therapists, switch meds you know, whatever it might be, or he finishes a school year and barely makes it out. And we go, okay, we're going to have some conversations this summer and next year, next year's the year we're going to pull it together and learn how to stay on top of things. And just never really got there consistently because he wasn't getting proper treatment. Right. Yeah. So it was an epiphany. A lot of people, when I share openly that my son was diagnosed with schizophrenia a portion of people give me condolences, I'm so sorry to hear that. Oh my goodness. And what was that like? Oddly for me, it was 95 percent relief. Sure. Because now we've got a name for it. Now we know what it is. And we can start, working on the solution. Absolutely. Navigate early episode psychosis treatment is really a game changer for so many families in our community. But, I know that you talk about when you say to somebody my son has schizophrenia. There's all kinds of perceptions and judgments and stigmas. From your perspective, what do you think it is? I think it, you know, my gut reaction, it's two things. One, there's still a stigma around mental and behavioral health where we're afraid to talk about it which is very unfortunate. We can come back to that in a minute. I think the other thing for me is that I think pop culture from Hollywood to books to whatever it might be. tends to take a caricature of a certain condition. We'll use schizophrenia as an example or just mental illness. And we can all probably think back in our minds to, you know, scary movies, TV shows, books, whatever it might be where someone with a mental illness is you know, I'm, I don't want to stigmatize people and use these words, but the characters they create they might not be completely fictional, but they are the most extreme, worst case scenario of that condition. And just the way we do with race, gender, ethnicity, you know, whatever it might be we're, slowly, painfully learning a lot about how we've characterized people in groups and cultures. And so as I have shared this with people I just decided I was going to be open about it so in social circles and even in business settings, when it's relevant, I reference that my son has schizophrenia and here's what we're doing and we've learned a lot and with right treatment, life can be great. Not only has no one reacted negatively, I'm surprised how many people are more than just empathetic, but share some similar lived experience that they have with some kind of mental illness with them or with their family. So yeah, I think the more we can talk about this and the more we can all be open about it because everyone's dealing with this, either ourselves, I have an anxiety disorder and I take medication for it. And I've learned that I'm better. You know, some people have depression, some people have bipolar or more significant things like schizophrenia. So I think the more we talk about it and the more as we've done with other social movements and Hollywood and whatnot, the more we can portray people and cultures accurately instead of the worst case scenario of that, the better we'll be. I'd love to hear more about your experience with the program itself. Yeah. Well, it's eyeopening because the program has multiple components for both the patient and their family. So for the patient, there is a therapist. There's a psychiatrist who provides meds. Those two talk together as needed to dial in either the therapy sessions or medications so the right hand knows what the left is doing, so to speak. And there's also an educational and vocational coach that can help find ways when they're ready for the patients to explore, you know, career and job opportunities. And all of those people talk. The fourth component is a therapist who's available for the family to talk with, because it's difficult for the family as well just like any other, you know behavioral or substance abuse issue, whatever it might be, those of us living with and, and loving these people have our challenges. So, when you think about it, to me, the structure of Navigate is so obviously beneficial that I'm surprised that it hasn't been around even longer than 2016 or, or the year that you mentioned. At least in Tulsa. Yeah, in Tulsa, you know. Yeah. Again, I think I have told people over the last few years as we've dealt with this that it's remarkable as a society, we are so far behind with mental Health in our awareness of it, our empathy towards it and even the services as great as Navigate is. You know, I always, jokingly say we can land robots on Mars, but. We drive by someone sleeping on a bench or under a bridge and say, well, that guy just needs to get a job, you know, and stop being lazy or a number of other examples. The empathetic piece of understanding where somebody came from and what I love about the name Navigate by the way is it actually was named that to convey the goal of helping people or guiding people. With first episode psychosis towards functional health and providing them with services and all the things that they needed so it was this Guiding principle, which I think is a really lovely concept, too Yeah, and I think what I have seen is if you can take someone dealing with an SMI, Severe Mental Illness and get them a little bit stabilized, get them on track for treatment, feeling a little bit better, even when they're medicated properly and having good therapy. It's, still going to be a little bit of a stretch for that person to go find a job. So for a program like Navigate to say, okay, you're ready. You're doing well. Therapy's going well. Meds are going well. Let's go to a job fair together, which is what happened with my son, among other things. But his job coach actually went to a job fair with him, walked around to the different employers, introduced him. He at the time had been living a bit like a hermit with mom and dad kind of back and forth between our houses. And you know, got into a spiral where he had some social anxiety about even just getting out there. So even though he was on anti psychotic and going through therapy and understanding himself and others around him much better, that next step of, okay, now you got to go apply for a job. That was a scary thing. I think it's a scary thing for so many people, even not dealing with an SMI. It's like just another hill or mountain you have to climb over and just being so brave in that. Absolutely. And when you have someone with navigate saying, okay, I'm going to go with you and I'll approach these people first and then introduce you to them. When he told me that, he's like, dad, she's going to go there and talk to them first and kind of get things ready for me. I mean, I could just see a world of weight lifted off of his shoulders. Wow. And following up on that not doing. Total applications and interviews for him, but reaching out to employers by telephone and saying, Hey I've met with this guy. I think you can really like him, here's what some of his skills and interests are What ended up happening was he got a job. Excellent. And now he's filling a role with a local manufacturer who needs workers. So he's making money and he's paying taxes and he's buying probably more drive through meals than we think he should. But you know, Hey, it goes to the tax base. He's buying gasoline. And so, now he's being a productive member of society and without navigate, that wouldn't have happened. There's no question in my mind. Wow. So yeah, I'm sure that he was fearful of judgment. Do you talk about that with your son or is that something that is just part of it now at this stage of the game? You know, he was afraid of mental health judgment as well as just someone who hadn't worked for a while. Right. And so at this point. He's very self aware and things are what they are and so he talks about his psychoses, talks about his meds he's an open book. And an interesting thing for him that has happened that I've noticed has increased after getting involved in Navigate and just being more well than he was before. He writes music and plays and records on guitar, ukulele, piano. And for him, you know, we all have our different outlets. For some people it's journaling, for some people it's talking with a friend, whatever it might be. For him, he's even more open about his condition with his music. And he might be even with me who I don't think he's uncomfortable with. something about putting music to lyrics that lets him get a little bit more descriptive, a little bit more detailed. So that's great to see him doing that. No, it's really great. I mean, art is such a wonderful outlet I think there's so much science behind just how it helps the brain. I just love that. Yeah. Okay. As a parent, and you're seeing your child not feeling well or exhibiting certain behaviors, you don't know exactly what's going on. You get to the point that you did, you get a diagnosis finally. And so what advice do you have for other individuals who might be dealing with something like this One for myself personally, I tried as long as I could to resist getting medication for my anxiety and I wasn't fully aware at the forefront of my mind about it, but it was my own stigma. about being quote unquote medicated. I didn't want to be that guy. And so I tried therapy. I tried reading books. I tried to just be more self aware. And at some point, I don't know what the tipping point was for me. I just decided I'm gonna go see, if medication might help. I thought I had depression and it turns out it was anxiety. I got on meds for a few years. I decided to maybe to try not taking meds and it wasn't good. And so what I tell people, because I still hear a lot of, Oh, well, if you're not on meds, that's a good thing. Or, you know, there's this fear about it. And I'm all for trying some naturopathic remedies, or therapy, or other things and letting medications be last resort. But don't be afraid of it. Try it. I don't take the largest dose. You might not need that either, if you're someone who could benefit from medication. For me, Nothing has helped the way meds have. With my son taking an antipsychotic, nothing has helped the way the meds have. So the first thing is don't be afraid of that. I can't change people's belief system who are just anti medication, but I would hope that maybe people would open their mind just a little bit. The second thing would be, you know, there's all these things in life that you think, well, that'll never happen to me or that's not me, right? And I, again, because of pop culture, because of people not talking about it, I never in a million years imagined that, someone in my family much less my son would have schizophrenia. And so it wasn't that I was aware and resisted. It was just so big and so different and so scary of a diagnosis that it'd be like asking me if I think I could ever go to the moon. I just would have never imagined it's not even on my radar. So I think if you're dealing with things and you're several years into struggling and you've tried different therapists and different solutions, you might just open your mind that, Hey, this might be bigger and more severe than what we're thinking. And. That's not the end of the world. Right, You know, if it's, you know, we hear schizophrenia, bipolar, some of these other, psychotic depression, some of these other terms and they sound, I promise you, they sound way scarier than they really are So how has, how has life changed now that your son has been diagnosed, has a job. I know you've touched a little bit on it, but has your life changed in how you approach life or how you approach the world or other individuals? Yeah, you know not only is it different for him and how we talk, I think one of the things that's important with some of these conditions for the families and, and friends and loved ones is changing your expectations, of how that person views the world and the things that matter to them. And so because I think with my son, even on medications and staying in therapy, every day isa struggle for him And so I find I'm far less, reactionary to him as a father, as a disciplinary So it's allowed me to kind of meet him where he is and love him for who he is. You know, he made cookies today and they were delicious and, you know, sprinkled confectioner's sugar on them. And I mean, a couple years ago before Navigate, he had a hard time leaving his bedroom. He's, he's being productive and creative with food as well. But your other question, how it has changed me separate from him, I see society very different and people very different. There are public things that happen that are a result of, I'm going to say, so you mentioned you're not a scientist. I'm not either. I work in a totally different career, so I'm not a therapist and I only know what I know as a family member and a patient myself. But, you know, a very extreme example a year or two ago at the Oscars, Will Smith famously slapped Chris Rock on stage. And so I don't bring this up to kick a man while he's down, but, prior to my son's experience and my own experience with mental health issues, I probably would have thought, oh, what a bizarre thing to do. But in my journey, the moment I saw that, I saw trauma. I saw someone with probably whether it was you know, childhood or whatever it is, just, just issues, you know, mental health is a combination of nature and nurture, as they say. And for my son and it's probably both for everybody. For my son, it's a lot more nature. There's different chemicals going on in his brain than for the rest of us. For what we saw at the Oscars. That might have been some life experiences. You know, we all have worked with maybe a coworker who people just roll their eyes and think is kind of a toxic person or, you know, whatever that is. Maybe it's a family member or someone in a friend group that, you know, people who aren't close enough for us to really engage and go, what's going on with you? And it lets me see that behavior a little bit differently. I don't excuse it. You know, bad behavior doesn't work. There's a reason you can't just break the speed limit or whatever it might be. But I can see that now and hold a little place in my mind and my heart for grace for that person or those people. And that feels really good. Oh, I bet. It's like stepping into somebody else's shoes. It's knowing that you don't know what somebody else has experienced in their life and why they are where they are. What you're saying is what's really important here. And the only thing that's really important is that you love your child unconditionally and that means allowing them to be who they are, whoever that person is. That's right. I've always loved my son, both of my children. But for a lot of years before we were on a path to wellness for him, I wanted him to fit in the mold of, The things you typically think of for a son, you know, pick up after yourself, help with chores, do well in school be polite when we go out to dinner, you know, whatever those things are as we raise our kids. And a lot of those things were really difficult and it was frustrating for me to not be able to get him in that mold that I wanted him to be. And I think it took something that's extreme for me to just go, okay, I can now sit on the couch with my son and just talk with him about what's on his mind or whether it's, you know, watching a football game or the news of the day and just talk. And it's great. Although I couldn't have been there before the diagnosis, and although there was a mental illness making a lot of that much more challenging I just think. We all have something to learn from that type of experience, whether it's friends or family members or a stranger on the other side of a counter at the airport, you know just being able to let go of and change expectations and appreciate, admire, and at times even love people for who they are and where they are. Just listening to your story, I'm learning a lot about you know, grace seems to be kind of the key component here. What can navigate the program itself teach us? Well, I think first of all two things on a social and personal level, it can hopefully teach us that there are a lot of people dealing with severe mental illness. who have so much more to offer themselves, the world, their families and friends than you might think. And so give them a chance, help them find, the help and the services they need. But I think, you know, the other piece to me, even if you have no empathy for people dealing with this, There is a societal and economic message and lesson to be learned here where I just wonder how many other people like my son are out there who are struggling, not working, a bit of a strain on themselves, their families. And with the right help, they can fill jobs, contribute to the tax base, as I was saying. And so, as great as this program is, and I don't have data on what additional need for things like this are, but I would say we need more of this. We need more Navigate. We need more wraparound services. We see this in other areas like homelessness and things where, it's sort of a blend of solutions that help a person move forward. It's not just one thing like navigate, it's therapy, it's meds, it's vocation and educational. coaching. So the more of that that we can be open to the better. If you're someone listening and you're in the mental health space, but you're not with family and children's services and you've got psychiatry. If you're a vocational coaching organization, find a partner, whether it's family and children's or someone else, bring all these things together. The other thing is that I would think employers could Look at this just the way we've looked at members of the military as a very employable source of people that maybe they haven't filled this particular job description, but they have lots of transferable skills from serving the military. That's a topic I think we're more accustomed to than hiring people who are in treatment for severe mental illness. Sure, not everybody is going to stay in that job. You know, people might last for three, four, six months and not be able to keep up with it. But a certain portion of them will. And if you exclude them completely, you're missing out on workers, so take a look. And really good workers. Absolutely. And there are programs like Navigate who can, I, think help. as an employer with some minor, not significant, but some minor accommodations that might be just a little bit more than the general employee population. How to not just recruit, but keep and train. My son has been on several different occasions promoted and learned new skills and moved from the floor to running equipment. he's wanting to get certified to run a forklift now, you know, that's his own idea. There's a self esteem piece too. I know that with our women in recovery program, for example, the employers that hire the graduates there. Say that they are the best employees they've ever had When you have somebody that really wants to have that independent lifestyle and it's become stable enough to be able to do that There's a self esteem and there's a pride in the work that they're doing. That's right. Gives them a reason to out the door every day and enjoy what they're doing. You know, the flip side of that is that I have no idea how many employees on average with a large employer might have some mental illness or behavioral health condition that's not being treated. So, looking at a population of people who are seeking and receiving and benefiting from that support and improving from it you've got workers there. So take a look and consider it. It's been great for my son and will continue to be. And I think there's an opportunity there for employers who haven't considered it. Great advice. So this has been so enlightening for me. Is there anything else you'd like to add as a closer? Well, as a closer, I want to give thanks to, navigate to family and children's and even outside of this organization, everyone in this space who is, either working you know, if you're a case worker, clinical worker, therapist, there is a certain call that you have. And. Those people are so special There's also volunteers who just do this out of the goodness of their heart and they're worth their weight in gold. And there's also those who fund these programs and whether it's a corporate or non profit foundation that is giving dollars to this. It's not just making people's lives better. It's making our communities healthier and stronger. So, If you're listening and you're part of this in any way, I might not know you, but I'm talking to you. So thank you for what you're doing. Please keep it up. And thank you for sharing your story with us today. Thanks for having me.