Tony Mantor: Why Not Me the World

Colleen Scott: One Mother's Journey Through Schizophrenia

• Tony Mantor

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A mother shares her 18-year journey supporting a son with schizophrenia through mental health system failures, incarceration, and experimental brain surgery.

• Colleen Scott's son started showing signs of schizophrenia at age 17, withdrawing socially and exhibiting erratic behavior
• A prosecutor advised having her son arrested "to get him in the system" for mental health help, resulting in traumatic incarceration
• Laws preventing family commitment, alongside HIPAA restrictions at age 18, create nearly insurmountable barriers for families seeking help
• After years of struggle, Colleen secured disability benefits and eventually enrolled her son in an experimental Deep Brain Stimulation trial at Johns Hopkins
• The mental health system's integration with the legal system often criminalizes mental illness rather than treating it
• Current group home living with court-ordered treatment provides some stability, though interactions with police remain common
• Colleen advocates for better training for law enforcement and restoration of family commitment options with proper safeguards
• Organizations like the National Schizophrenia and Related Conditions Society (NSSC) offer hope through focused advocacy and lobbying efforts


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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

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 Mantua. Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Today we're honored to be joined by Colleen Scott, a resilient mother whose son has endured a profoundly challenging journey, with schizophrenia marked by countless obstacles, in the pioneering trial brain operation. She's here to offer an in-depth account of her experiences, bringing a wealth of knowledge and perspective that promises to enlighten us all. We're truly privileged to have her share her story with us. Thanks for coming on.

Speaker 2:

Yeah, well, thanks for having me.

Speaker 1:

Oh, it's my pleasure. I believe you said your son is 35 now. Is that correct? 35,? Yes, how's he doing now? Is he holding up, okay? And what does his daily routines look like?

Speaker 2:

Today he's actually in the hospital right now. Okay, suicidal ideation, which is not that common in the 18-year history that he's had with his schizophrenia, which is his diagnosis. His sister, karen, who is actually a doctor in Michigan as well, has said that, mom, I've noticed every year around the holidays, which is a pretty common thing, this does happen, but in general I think he's considered to be a difficult case or a serious case of schizophrenia. Over the years I've seen little adjectives hooked on in front of it by various doctors during various hospitalizations sometimes paranoid schizophrenia, sometimes undifferentiated things like that.

Speaker 1:

Okay. Do you see him getting this under control with the doctor's help? What's the overall outlook from the doctors on what his future can look like?

Speaker 2:

federal health agencies by conflating it with this whole recovery paradigm goal that they have, which is nice for people who have minor depression or, you know, are going through menopause perhaps, or who have minor drug addictions Not that they're minor, but you know what I mean. They're not about to pass away from overdose every night, but you know about to pass away from overdose every night. But you know, these things have been combined in these agencies, that is to say, alcoholism and drug addiction, a lot of mental illness. But the problem with schizophrenia and, I suppose, some other serious mental illnesses is that they are not really curable.

Speaker 1:

Yes, I totally understand that. Just like with autism, that is something that some people think can be cured when it ultimately cannot. So autism and serious mental illness can parallel each other. For that I think you said he showed signs of this around 17?.

Speaker 2:

That's when he first became psychotic, and this is an interesting point, because he wasn't diagnosed right away. Okay, I can go on in that point.

Speaker 1:

When you describe him as psychotic. What were some of the behaviors or actions he exhibited that made you realize he was struggling? What events led up to that point?

Speaker 2:

Well, he and his sister were one year apart in their high school at the time and both of them took the SAT test together. He actually did better than his sister who, as I say, then went on to get not only her MD degree but several additional degrees, fellowships, minor degrees in that field. But he dropped out of high school, I think late in his junior year, shortly after the SAT tests were taken. And so I'm saying that to point out that he is natively intelligent. But he just withdrew socially, which is one of the warning signs. Also, he would run away. I mean, it's not like running away when you're 12, but when you're 17, 18, running away just means couch surfing at your friends and refusing to come home, refusing to respond to parental direction, that kind of thing. He was at that time displaying some of the normal kinds of behaviors that schizophrenics will display, which is called psychosis, because they're detached from reality.

Speaker 1:

So after going through all of that, what did you do next? How long was it before you decided to seek a doctor's evaluation to get a diagnosis?

Speaker 2:

That's kind of the million-dollar question and one of the reasons I thought this podcast could be helpful to people because in our experience and I think it's shared by a lot of Americans when the male becomes schizophrenic at the age of 17, 18 roughly, and the female at 35, it's very sad for the males because at that stage in life many boys are already rebelling or trying somewhat dangerous behavior as part of growing up as a male, so it's harder to designate it as an illness, I think, and they do tend to get involved with the law, much more so than the females, who, by the time they're 35, would have maybe gone to college, had a job, had children, even have a marriage. So they've learned how to be an adult, but the males have not, so they tend to tangle with the police more. That's my understanding, what I've seen.

Speaker 1:

Well, that does make a lot of sense. At what point in time was it that he wound up getting involved with the legal system?

Speaker 2:

Well, that is the reason that your original question was million dollars. Is that it's my contention that the legal community has failed this population of schizophrenics and perhaps other people with serious mental illness so badly, in that they have gotten rid of the mental health institutions. They've also legally impeded the family's ability to commit family members. They've also introduced HIPAA laws that kick in at the age of 18, which prevent the family from even knowing what's going on if the child is hospitalized at that age.

Speaker 2:

In my particular case, there was a prosecutor in Ann Arbor, michigan, which is where we were all living at the time, upon consultation, told us that in order for Jonathan to get a diagnosis, especially against his will because many times these people have this anos, they don't know they're sick. There's a term for it he recommended that we have him arrested, believe it or not, in order to get him in the system. His quote In order to get him in the system. His quote. You know, I'm quoting the prosecutor. And then he said they would be able to introduce Jonathan to the community mental health clinic, which was kind of the replacement, about 40 years ago, to the so-called state hospital of yore, which you know I grew up with, having been born in 53. You know now we don't have those, but we do have these community health mental health clinics. Now, looking back on that, that was a huge mistake.

Speaker 1:

Actually, that was my next question. Did you follow through on that and what were the results?

Speaker 2:

Did you follow through on that and what were the results? It was an unmitigated disaster. He was incarcerated. He was subjected to solitary confinement. One has to remember that the people who operate county jails are not medically trained or particularly sympathetic to 18-year-old or 19-year-old boys in their misbehavior. It might be perceived as just misbehavior, or maybe he's high on pot or something along those lines. So it was very, very disastrous for Jonathan. He still talks about it to this day, those experiences.

Speaker 1:

Now, once you followed their recommendations and that process played out and he was actually incarcerated, what was the next step of the journey?

Speaker 2:

The next real step of this journey did not happen for a few more years. First of all, he was kept in, not exactly, but what the crime was that he was charged with was a felony, which is kind of shocking, and what this crime supposedly consisted in was stalking. But what that really was was when he turned 18, his father insisted that he go to a psychiatrist. He refused again because of the normal symptom of this disease, especially early on, wherein the patient doesn't know they're ill and thinks everybody else is crazy and there's nothing wrong with them. So at that point his father said well, then you have to leave home. He was being rather disruptive as well. This was done as sort of a shock, kind of shock technique or tactic, and at the same time this prosecutor was being consulted, because he would come and sleep on the porch of his family home every night and his father would say no, you have to go, stay in your apartment or get a job, do this kind of thing. But he had no ability to do that. He hadn't yet been diagnosed. So he was then charged with this felony.

Speaker 2:

And then somebody in Ann Arbor in the court system there, going back in 18 years in my memory, but I'm quite sure I remember the details. He was then put in a forensic center which is designed to determine the criminal's ability to stand trial. So that indicates somebody in the jail recognized there was something mentally wrong with him. But then this went back and forth. They kept saying oh, we've treated him for two months in this forensic center and we're now sending him back to the county jail so he can stand trial. Probably the people in the forensic center didn't understand how weak this case was. Regarding the blocking, I don't know. No one talks to you because now they're 18 and there's very little access or effort to include the family, which I think is another failed aspect of the current system. So that was pretty much the next step, as you asked.

Speaker 1:

Okay. So once you went through all that, jumped through all the hoops, did he actually go to trial and if he did, what were the results from it?

Speaker 2:

He was convicted he still has a felony and then, shortly thereafter, I realized how ridiculous this was and called just about every lawyer I could find in Michigan, which leads to another interesting point for your podcast theme, in that four or five lawyers I spoke with who were listed, as I forget exactly how I got their numbers and names at the time, but had worked with the mentally ill in the past all told me yes, we used to do commitments for families.

Speaker 2:

We would have to get to psychiatrists and we would talk to family members and we would commit these individuals for treatment, often against their will, because, again, they don't know there's something wrong. However, they said we no longer do this because we're not allowed to. I said what do you mean? You're not allowed to? And they said the laws have changed. I think it's because there was a Hollywood sort of scenario that was often played out, where family members would commit their spouses because they wanted out of the marriage or something along those lines, and so the courts and the judges and the lawyers that are involved with this and the laws were changed so that this couldn't be done, so that family commitment was a kind of a thing of the past.

Speaker 1:

Okay, so what happened after all of this? Was you able to get anything changed, or is he still in the system?

Speaker 2:

It's permanently that way and that is one of the flaws in our system, our big on the national level big flaw in our system. I understand why they closed down the so-called state hospitals because they were, again in Hollywood, often highlighted as being horrible places that were full of abuse, so there was a movement to shut them down. But then I've read the history on this it was actually during Kennedy's presidency where he came up with the idea of this community mental health clinic system. But then he set aside all this funding, knowing that if it wasn't well funded, especially initially, it probably wouldn't succeed. But then the Vietnam War broke out and all that money was taken to fight that war.

Speaker 1:

That's very interesting. Now, once you got through all that, jumped through all the hoops what happened after he got released, even though he's still in the system?

Speaker 2:

well, he was young enough and he had been very popular in high school so he had enough friends in our local community in ann arbor. Most of his friends had gone on to college but he did start a career of couch surfing for about two years but then even his friends sort of cut him off because he was too bizarre in his behavior and I think he may have frightened people. So at that point I desperately was and I was getting no advice at all, no counseling from any. I couldn't find a lawyer to help me and I couldn't find a doctor to help me. I had no clue what to do, and I think this is commonly the case with parents.

Speaker 2:

So I decided that I that he couldn't work, he couldn't hold up. I mean, we tried that. I took him to a few jobs and tried many times to get him trained in things over this three-year period. So I took him to the Social Security Administration and he was seen by a psychologist and it was determined that he would receive SSI benefits, which is supplemental security income, which is really quite a pittance I think it was $850 a month but that's not enough to live on. And then I eventually got him his adult disabled child social security disability stipend, which is much more reasonable. It's like the same amount you would get when you retire.

Speaker 1:

I mean, there's some variance there, but in general Okay, Now you mentioned something about a study that was performed. Can you elaborate on that?

Speaker 2:

Yes, well, I started at the beginning researching and finding out about programs and the system existed so that I could help my son and eventually I found a little post on Facebook. I mean, this was years later and I think it was posted by a member of the NSSC, which is the organization that actually contacted you. That's how I got your information and contact information and they just randomly posted. There was a study that was about to be begun at the Johns Hopkins Hospital, which is a very famous research hospital in Baltimore, maryland, and they were going to do something for schizophrenics. That was new and unique.

Speaker 1:

That's interesting. What was that called?

Speaker 2:

It's called the Deep Brain Stimulator. So I contacted Johns Hopkins. I got nowhere with them. This is sort of funny. And then the story had been written up in a journal, a research journal. So I contacted the journal directly as well Got nowhere with them either. In fact, they even have a person hired at Johns Hopkins because they do so much research. I imagine whose job it was to interface with people responding to the journal articles and in sort of an almost like a marketing, advertising capacity or PR capacity. I contacted her. I got nowhere with her either. Finally, I ferreted out the name of the physician that was in charge of it, and he's a 67-year-old, lovely psychiatrist who hails from Italy. Now, I had lived in Italy for a year myself, so I felt close to the Italians. So I felt close to the Italians, and I think that might have led to why I contacted him directly, not through the hospital at all, and wrote him a long letter in my longhand and he called me back. So then we were immediately in.

Speaker 1:

That's amazing, but I'm glad it worked out. Now, once you contacted the doctor and he was going back and forth, how long did it take before the procedure actually came to happen?

Speaker 2:

Just a matter of months. He was ready to go with his study and needed people to volunteer.

Speaker 1:

Once the procedure was completed, how long did it take for the effects to kick in, or was it something that developed gradually over a period of time?

Speaker 2:

That is a kind of an unknown, in that the doctor has told me that he has three other previous study subjects who have had the TBS surgically implanted for about three years and that it does take time. It doesn't happen overnight, so we're being very patient. It's been less than a year, regina.

Speaker 1:

Oh, so it was a year ago that this procedure was done.

Speaker 2:

Less than a year.

Speaker 1:

Less than a year. Okay, have you noticed any changes at all in the past year, or is it still something that just takes time before you find out?

Speaker 2:

Well, there's been some changes. Yes, in his schizophrenia.

Speaker 1:

Has it been positive changes.

Speaker 2:

I would, I guess, say good. Again, I'm often asked by the group of psychiatrists and neurosurgeons who work with Jonathan what my observations are, because it's useful for their study, and I hesitate to say much because I realize whenever you're doing any kind of a scientific observational study, there's so many conflicting causes for any change. It might just be the attention he's receiving, it might be various things like the month that I spent with him in the hospital while he was initially getting worked up and when the surgery occurred, so that there's been so many other changes surrounding his life during the period of this intervention that I hesitate to draw any scientific conclusion as to what the cause was.

Speaker 1:

Yeah, what do you see for him in the next year or two? Do you see him getting better, or do you see him, unfortunately, one of those that have to have a watchful eye on him for the most of the time?

Speaker 2:

The latter. I don't think that he's going to recover, but I'm hoping for improvements, but I'm not hoping for a miracle.

Speaker 1:

I suppose my main question is after everything you've been through your son's 35, navigating the jail system, enduring trials, working through the legal process, consulting psychologists, even pursuing this brain trial what's your greatest fear now, as you look ahead to his future and the possibilities that lie before him?

Speaker 2:

Well, probably that I think there's a higher percentage of suicides among schizophrenics than the rest of the population. Their life expectancy is shorter and I'm sure that includes their lifestyle. By that I mean they're often homeless, sporadically homeless, if not permanently, and just poor health due to lack of money, lack of social stability. That puts them at risk in many ways, a dangerous way, sort of traumatic injuries could result, things of that nature. Those are my fears. And then, of course, my personal fear as a mom is that I won't be here forever. I don't know if you noticed, but I started smoking again Now. I had never. I had smoked when I was a teenager. I had quit when I had my children. Now I have been terribly impacted by this. I mean incredibly, incredibly impacted.

Speaker 1:

I think you raise an important point that we should address. With so much stress at home and the uncertainty surrounding everything, how do you manage it? How do you cope? What strategies do you use to cope with the unknown?

Speaker 2:

So smoking is the only thing I can think of. It's either that or drinking, which I don't want to do because that's really bad I totally get that.

Speaker 1:

I really do. What's his lifestyle look like right now? Where's he living and how's he getting along?

Speaker 2:

he's in a group home. He's under AOT orders, which dictated by a probate judge. It's a special court. It usually deals with wills and people who are dead, but it can also deal with disabled people brought in to adjudicate their insanity, I suppose, and any other related issues that come up.

Speaker 1:

Now that a little time has gone by, he's got out of the court system. How has his life changed? Has he stayed fairly straight so that he's been able to stay away from the legal system?

Speaker 2:

Yes, except for the times when he was in a new city and wandered off and didn't know his surroundings and was arrested for vagrancy. And you know, not just vagrancy, but these individuals that suffer from this disease have very poor social interactive skills. So I can having not observed it directly, I can imagine, for instance, if they're standing in front of a business in a business district and the store owner asks them to leave because they don't want them out there. They look disheveled and there's no reason for them to be standing in front of the store for four hours, or something like that. Then of course the police are called. Then they get picked up and there's just a misdemeanor associated, but they do interface with the police at this point. So then they probably may have a court case, something like that.

Speaker 1:

So in a case like that, we're talking interaction with the police and, ultimately, interaction with the legal system. Did they work together well on that?

Speaker 2:

Well, no, they don't. Again, it depends on the officers involved. Now there are efforts to train police forces and some cities have taken up this kind of training and they have special officers designated for this kind of work. But, of course, if that officer is not on duty, call, comes in your dealer, will you know who knows?

Speaker 1:

Yes, that's a very tough situation. Lots of times, if a police officer comes into a situation that they don't know, they have to make a decision in seconds. Sometimes it can be the right one, sometimes it can be the wrong one. If they're not trained, it could easily go the wrong way, which is very unfortunate.

Speaker 2:

Very easily, because they often misinterpret the actions of the schizophrenic. They don't know the person, so they just keep being obstreperous or maybe high and therefore dangerous. So they are afraid too, and I sympathize with them.

Speaker 1:

Sure, sure, absolutely. It's a tough road for everyone involved. People have to understand that not everyone handles the situation perfectly, which can make things challenging to navigate. The key is finding ways, hopefully, to improve it so that everyone involved can emerge with less harm, fewer problems and the ability to move forward more easily.

Speaker 2:

Yes, and that is one reason that, out of all the groups I've seen over the years, including NAMI been around for many, many years. It stands for the National Alliance of Mentally Ill and it claims to advocate for the mentally ill. It doesn't do anywhere near an adequate job. I think the NSSC has a focus and ability to do some direct lobbying, which is why I signed up with that group, because I'm hoping to do that.

Speaker 1:

Yeah, it's a very tough situation. The average person has no clue of what people go through on a daily basis because they're not associated with it, so it's really tough, for sure.

Speaker 2:

Absolutely, and the families and the fear. It's absolutely overwhelming for families and maybe the commitment procedure of old was flawed, but to me it's like throwing the baby out with the bathwater, because it is needed. We need the ability to bring that individual in some way in conjunction with the community mental health clinic or something, so that they can find a neutral place so that the person could be interviewed. There's some I can imagine some way of dealing with this better than the current situation.

Speaker 1:

I agree Things do need to change. The biggest thing, I think, is understanding. I think all the people within the legal system and not in the legal system need to understand what's going on.

Speaker 2:

Very true. There was a congressman a few years ago I can't remember his name right now, he was from down east who was hit over the head by his schizophrenic son I think he was maybe 19 or 20 at the time having an hallucination, probably thinking his dad was a cyborg or something. I mean, I don't think he was a truly malicious child. This poor congressman kind of kicked this mission up to improve the situation that you and I are discussing right now, because he was shocked and even said in a statement you know, here I'm a congressman, I can't get anything done for my son and then I ended up getting hit over the head, which he survived. The attack it wasn't you know, but it was pretty awful.

Speaker 1:

Yeah, yeah, I mean. Anytime that a person has an event when they lose control of their focus and their mind, it's really tough on everyone involved. So bringing more attention to it, raising awareness and hopefully fostering a better understanding could make a difference. With that said, this has been a great conversation, great information. I really appreciate you taking the time to come on and talk with us.

Speaker 2:

Thank you so much for having me.

Speaker 1:

Oh, the pleasure has been all mine. 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, 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.