Tony Mantor: Why Not Me the World
Autism is a complex neurodevelopmental condition that affects millions of people worldwide.
It is characterized by difficulties in social interaction, communication, and repetitive behaviors.
Although autism is becoming more widely recognized, there is still a lack of understanding and awareness surrounding the condition.
As a result, many individuals and families affected by autism struggle to find the support and resources they need.
Why Not Me The World podcast aims to bridge that gap by providing valuable information and insights into autism, fostering empathy and understanding, and promoting acceptance and inclusion.
Nashville based Music Producer Tony Mantor explores the remarkable impact his guests make by empowering their voices in spreading awareness about autism and helping break down the barriers of understanding.
Join Mantor and his guests as they delve into the world of autism and mental health to explore topics such as diagnosis, treatment, research, and personal stories.
Together, we can create a more informed and compassionate society for individuals with autism.
Tony Mantor: Why Not Me the World
From Diagnosis to Detention: How Schizophrenia Changed Two Lives Forever
Carly, a licensed clinical social worker and mother, shares her 30-year journey navigating her son's schizophrenia diagnosis and the healthcare system's failures that led to his year-long incarceration.
• Son diagnosed with schizophrenia at age 17, now 47 years old
• Early signs included not wanting to get out of bed, not going to school, and "odd" behavior
• Initially had periods of stability while on medication but struggled with consistent treatment
• COVID isolation marked a turning point with medication non-compliance and rapid deterioration
• Multiple hospitalizations where he was repeatedly released before being stabilized
• Baker Act attempts failed, requiring court intervention for involuntary commitment
• Currently in jail after physically attacking neighbors, with limited treatment options
• Courts cannot order medication or appropriate treatment due to misdemeanor charges
• Carly's advice: "We didn't cause it, we can't cure it, we can't control it"
• Self-care is crucial for family members – "The best thing we can do for our loved ones is to take care of ourselves"
Tell everyone everywhere about Why Not Me The World, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me? The World Podcast hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to why Not Meet the World Humanity Over Handcuffs, the Silent Crisis special event. Today we are joined by Carly, a clinical social worker who is stepping away from her professional role to speak to us as a mother. Carly's child lives with a serious mental illness. She brings a wealth of personal experience and insight that she will share with us.
Speaker 2:We really appreciate her taking the time. Thanks for coming on. I'm happy to be here and I'm glad you're here too. Really important topic and conversation that needs recognition.
Speaker 1:If you could give us a little background on what you do and your journey in what you've been trying to accomplish.
Speaker 2:I'm a licensed clinical social worker. I'm retired. My son was diagnosed with schizophrenia when he was 17. He's now 47 years old. We've had periods of instability and periods of stability, and he's been in jail for over a year now for incidences he caused due to his lack of taking his medication.
Speaker 1:When did you first notice something was off with him? I'm curious about the very first moment you realized he was dealing with some personal issues that just needed attention.
Speaker 2:When he was in his last year of high school he had a lot of those symptoms where he didn't want to get out of bed, he didn't want to do anything and or go anywhere and stop going to school. And there was also the other extreme where he was acting a little silly and goofy and odd, just odd. So I did bring him to a psychiatrist and they did evaluate him and he was originally put in the hospital and that's when he was diagnosed with schizophrenia. Somewhere along there was schizoaffective disorder, so that's where he had he kind of ranges between being depressed and having some of that mania, along with symptoms of schizophrenia where he did the paranoia and the delusions and things like that hearing voices.
Speaker 1:When he was a senior. You mentioned getting a diagnosis. Once you received that diagnosis, what steps did you take to manage it and improve the situation, even if it wasn't fully under control?
Speaker 2:Yeah, we were referred to a psychiatrist, so we started seeing the psychiatrist. Unfortunately, during that period of time he was also using drugs unbeknownst to me and that particular psychiatrist fired him because he confessed to using drugs along with his medication. We found somebody else. We found this fabulous registered nurse practitioner who we saw for many years and he did very good for a long time.
Speaker 1:When someone hears schizophrenia, they often assume the worst. So during the process, when he was on his medication and things were relatively stable, what were you going through to help keep him on that positive path?
Speaker 2:What were you going through to help keep him on that positive path? Well, then and now are like two different lifetimes right, when he's that young?
Speaker 1:Sure.
Speaker 2:It wasn't as serious as it is now. You know, when I look back, see how he is like I've never this past two years I've never seen him in such a decline, in such state where he didn't even recognize who I was. My husband and I have been in his you know his stepfather over his house weekly helping him with groceries or transportation. He's also in a wheelchair because he lost a leg due to a psychotic break he had, and so we gave him. You know, we spent time with him and when he was younger, eventually he got his own apartment we were living in South Florida, got his own apartment.
Speaker 2:He was on his medication but he was doing things like rolling town in the middle of the night, like just going out walking. I'm like Nathan, you can't be walking around at night, You're going to get in trouble. But it didn't kind of oh, I've talked to the police, they're fine, I tell them who I am. And he continued that even when we moved north. He even continued that behavior while he was still able to walk. It was just um odd behavior. Not sleeping at night, always have a hard time sleeping and managing his moods, you know he'd fluctuate from from being depressed to being manic and he's doing. He's an artist, he's a writer, he plays music, writes music, and so you know he'd be kind of like all up all night creating. He'd get in these creative. You know he'd be kind of like up all night creating and get in these creative moods and he'd be up and then he'd go the other direction where he couldn't get him out of bed to do anything.
Speaker 1:So how is he doing now? Is he better, is he worse? Is he still the same? What's his situation look like now?
Speaker 2:It's bad, I'd say. About two years ago he started playing around with his medication dosage, unbeknownst to me. I think this whole thing with him ending up in jail started with COVID. So he tends to be rather isolated anyways, but he was living in disabled housing so the people around him had some sort of disability. He did have friends and neighbors he associated with, but COVID happened. And then, just coming out of COVID there were things. There were like small red flags where I'd be like hmm, what's going on here? This is a little odd. You know he's going to change the pictures hanging on the wall because they were evil. That was a red flag. He wasn't eating. He lost a lot of weight, he was just acting not like himself. He had bed sores. Part of this all started with bed sores, where he's in bed a lot trying to alleviate that. And I went over one day. He said he was meditating but he didn't recognize who I was. He was in his bed and I called to have him. Baker acted.
Speaker 1:What happened from there?
Speaker 2:That was a big fiasco. They wouldn't baker act him, even though I told him about the incident where he did a lot of self-harm A number of years ago. He did a lot of self-harm and thankfully he woke up and called 911 himself. But even with that knowledge that he was a danger to himself and possibly to other people, I had to go to the courthouse and have him ex parte.
Speaker 1:I've heard that can be a challenge. How did that go?
Speaker 2:That was extremely stressful because this took hours. I had to leave. I'm like you, mean I've got to leave him in his house where I don't know what he's going to do, go downtown and get these papers and then wait upon the police or whoever is picking them up. It ended up being firemen, police and ambulance and I was terrified. We hear stories about the mentally ill getting shot or killed because they defend themselves. He was very aggressive, locked me out of the house while we were waiting, screamed and yelled. His nurse had come, happened to come by, screamed and yelled at us to get out and it was very scary. But they brought him to the hospital and this was 2023, in July. He was in the hospital for three weeks.
Speaker 1:Did that help him at all? How was his situation in the hospital?
Speaker 2:That was horrible. He banged his head, he had stitches and was very aggressive. He knocked over nurses. He did horrible things while he was there and I'm like, don't tell me what he's doing. And I didn't go see him. They ended up having to put him in the hospital because he needed stitches and then things got worse and they put him in a coma. His behavior was so outrageous they put him in a coma for a couple of days. I went up to see him because he was basically sleeping and I played him music. He plays. We usually play music together. They brought Bailey and I played for him and he kind of knew I was there and then when he woke up, they took him out of it. The medical director of the ICU is where they did it Said oh, he can go home now.
Speaker 1:That kind of surprises me that they was going to let him go that soon. So how did you handle it? What was your response?
Speaker 2:No, he can't. He can't go home now. He can't take care of himself, he hasn't been regulated on his medication. So there's been this history of him being hospitalized and they let him go too soon, like he's not stabilized yet, he's not at baseline yet. And so I was able to get him back into behavioral health and they didn't keep him long, at least it was a little bit longer, but he continued with the behavior of I don't want to take the medication, I'm not sick. What's the word? Anasognasia?
Speaker 1:I have a tough time with that word too. I think it's anasognasia.
Speaker 2:Yeah, so he doesn't recognize at this point that he's ill and he needs medication. So he continued and I tried, you know, putting his medication, helping with his medication, you know his weekly thing. And at this point I was going over every day for months I was thinking, you know, I had some control over this baffling and cunning disease, right, which I had no control whatsoever, but I was trying. I could see the train wreck happening and I couldn't stop. It is what was happening and he started doing some bad behaviors in his apartment that he'd live in for 17 years. He wouldn't keep his clothes on, he was banging on people's doors all night, he was taking mushrooms and weed I don't know if there was anything else but those two. I do know I did talk to him. He wouldn't listen and, like I said, we were there every week and he called me every day. I didn't see it coming.
Speaker 1:This is definitely tough on him with what he's going through, but how was you handling it? It's just as tough for you seeing your son go down the spiral, so how was you handling it?
Speaker 2:I felt, I think, in the end, that love wasn't enough. Love and caring and showing up literally wasn't enough to keep him from doing what happened. He needed. We needed social support. That didn't exist.
Speaker 2:His psychiatrist ended up firing him because he called up. He was making these awful phone calls and saying terrible, crazy things to people or writing emails. I actually got a call from he had art in a gallery. I actually got a call from the gallery owner saying do you know what's going on with your son? And I said yes, he's unmedicated, he's not doing well, and she shared with me the message she left and it was just like you couldn't even follow it. It didn't make any sense. And he was angry and she said should I be afraid? And I said I can't tell you that. I said if you're afraid, you can call the police. He's in a wheelchair, he has one leg, he doesn't have a car, but I'm not going to tell you, not to protect yourself or your people.
Speaker 2:And so you know he was back to his causing a lot of trouble at his apartment complex. So his baker acted at one time, marchman acted, another in the third one that ended up in and this is a matter of a few months where he actually attacked his neighbors which were his friends, physically attacked an elderly lady and his friend who was his neighbor. So he called me a few times. After that they released him a couple of times. He's not going to get better and you can't have a rational conversation with somebody who's not rash, right? He's calling me sister, something, like he didn't know who I was, sister, something.
Speaker 1:So, with all this going on, what was next? What happened from there?
Speaker 2:They let him go from jail twice. He got rearrested within 24 hours because he doesn't know what to do or where to go. He went back to his apartment, got rearrested there 24 hours because he doesn't know what to do or where to go. He went back to his apartment, got rearrested there for trespassing and something else. Another time we put him in a hotel one night but the next day he wouldn't get out of the room. It's like okay, we're going to go to the homeless shelter and these are the rules and this is what you have to do, and so on and so forth. Yeah, that was an arrest.
Speaker 2:So after those two releases and arrests they just kept him there and he's had several different lawyers talking to the lawyers occasionally. The social worker I would call every couple of weeks. He's aggressive and noncompliant and doesn't cooperate and I believe he's been in isolation a lot, I don't know if the whole time, but they don't basically in the jail. You know, if the patient, if the client, participant, whatever, want medication, they can't force it and no matter how many times they said to the lawyer and sent letters to the judge, he originally had three felonies which would have gotten him the help that he needed. The judge put up order. Court ordered early on, but the lawyer at that time didn't want to ask that or whatever.
Speaker 1:With all this happening between the lawyer and the judge and everyone that was involved, what was the next step? What did they tell you At this point.
Speaker 2:They're misdemeanors and with the misdemeanors they just tell me they can't court order medication and they can't court order him because he needs to be in the state hospital to get stabilized. That's what I think he needs to be somewhere long-term where we've got professionals taking care of him. They just tell me we can't do that At this point. He's a difficult placement. They could place him in a group home or there's another place that helps people with cognitive issues, but with him being aggressive he will cause problems there or maybe even flee, they don't know. So I don't know that they're going to come up with a good discharge plan that is going to really help.
Speaker 1:Now that you've been through this 2020, hindsight is always perfect. Looking back over the years you've been doing this, do you see anything that stands out, something that could have changed, or was it just destined to turn out the way it did for him?
Speaker 2:I mean I can say, well, maybe I should have done this at that time or that at that time. I mean I tried to get him Baker Act. You know you think of the Baker Act as answer. It wasn't going to be an answer if he continued to refuse his medication. He's already on this. The medication is poison. It doesn't help me. I'm not sick, I don't need it. I feel like at this point there was nothing I could do to stop it.
Speaker 1:It seems like for every solution offered he raised another obstacle. So I believe he did everything you possibly could.
Speaker 2:As much as I tried, I tried for months. Like I said, I sat there with him. I literally made a list Keep your clothes on, keep your music down, stay in the house after such and such. I mean, I'd come home and I'd go back to his house the next day and of course, it'd be crumpled up in the trash. There was a point where of no return. That was what initially I was trying, because you could see it happening and it was like if only they would keep him longer at the hospital. That's what would have saved him. But that wasn't happening.
Speaker 1:It sounds like you were doing your best to consider every possibility, so I don't think second guessing yourself would have made any difference at all. So, looking ahead, what do you see now, what do you think you have to do and what can help him to get a better, stable life for his future?
Speaker 2:a letter explaining his illness and my fears are A he's going to hurt himself, he's going to hurt somebody else or somebody's going to hurt him. He doesn't have any social skills at this point to stay at the homeless shelter. He didn't have that a year ago. He didn't have the ability, the social, his social behaviors and regulation, and what to do was out the window. The best thing that can happen and it sounds horrible is that he ends up back in jail. At least I know where he is and he's safe. I mean, it certainly isn't ideal, especially if he's in isolation and I have no control over him. And I have no control over the judge, the social workers, the people in the jail, whatever I have to say, I can say all day long, but they do what they do right.
Speaker 2:So I don't want to be not hopeful. There's always a miracle that can happen and I feel like, regardless of the brain disease, we're all on a journey, right? We're all on a journey, our own journey, and he's on his and he's on this, this pathways, and I don't know why, and I I will never know why, whatever happens, why this happened, and you know, it's his journey. It's his journey, Just like my journey. My journey is my journey, and somebody can walk along with me. I can walk along. I've been walking beside him like I'm walking beside him, maybe guiding him and supporting him. That's all I could do, and once he decided he didn't want that anymore, for whatever reason, then he's basically on his own and to whatever you know is going to happen is going to happen.
Speaker 1:Right, there's not much more you can say on that. So what advice would you offer to others who might be facing the same struggles you've been through? How would you guide them toward finding even a small sense of peace in their lives, so they're not left carrying the weight of self-blame or trapped in that pain, because, as you know, it's a very painful journey?
Speaker 2:Right? Yes, number one, we didn't cause it right. We as parents, friends, family we didn't cause it. We can't cure it and we can't control it. All we can control is our response to it and we have to make a decision, as family members or friends, what we're going to do. How can I best help this person, if that's even available? If it's available to help and have boundaries and I think people really need to know that it's okay to have boundaries. If your loved one is violent, you don't have to. It sounds awful, but if they're being violent in your home, you don't have to put up with that. Your life doesn't have to be ruined because your loved one has a brain disease that's affecting you. I think that people knowing that they're not alone and that's what of what you're doing is, you're not alone there's, there's lots of us friends and families of relatives with seriously mentally ill people all over the world. I'm sure We've all sacrificed a lot of time and energy and worry and fear and the what ifs and the sure to haves and the guilt right, we feel guilty. Well, maybe I should have said this or shouldn't have done that, or what have you, and in that it's not productive. It's not productive.
Speaker 2:The best thing we can do for our loved ones is to take care of ourselves. It all comes down to we have to stay healthy. If we go downhill, we're depressed and we're you know, we're in a bad place. We're not helping them. So the best thing we can do, the bottom line for ourselves, is to take care of ourselves. It's okay to have fun, you know. It's okay to have fun. It's okay to have fun. It's okay to enjoy your life, and we can't sacrifice our life because this is happening or happening to somebody we love. We can't sacrifice our life for them, and that's the best thing we can do is to stay healthy ourselves for them and that's the best thing we can do is to stay healthy ourselves, Absolutely.
Speaker 1:From a parent's perspective, it's all about wanting the very best for their child. It can be incredibly hard to even think about heading out to a party when you know your son or daughter is struggling. That's a deeply emotional thing for any parent to work through and it's completely understandable to feel that pull on your heart. Like you just mentioned.
Speaker 2:Yeah, definitely not saying it's easy, but I think we have to realize that it's something we have to do for ourselves. We just have to detach. So what is it?
Speaker 1:we detach with love, you know you're so right Keeping our own peace of mind is essential, because if we don't, stress can creep in and affect us in ways we might not even expect.
Speaker 2:Absolutely, absolutely, yeah. That's why the bottom line is we have to take care. So if he turns around and I don't know what happens, I want to be in a good place If we're to have a relationship. Things turn around. Things turn around 100%. He's stable again. He needs assistance for whatever apartment finding or what have you. I want to be there for him, but I also, you know, I want to be there for him, but I need to be here for myself and do those things that make me happy. Now.
Speaker 1:Absolutely. I think that's tremendously important. Well, this has been great Great information, great conversation. I really appreciate you taking the time to come on. Thank you.
Speaker 2:Thank you for having me.
Speaker 1:Oh, it's been my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.