Colleen Scott
Appearances
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Today, he's actually in the hospital right now. 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, he's...
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Just a matter of months. He was ready to go with his study and needed people to volunteer.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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 for John.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Less than a year.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Well, there's been some changes, yes, in his schizophrenia.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Well, probably, 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...
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Social stability, you know, that puts them at risk in many ways, you know, dangerous way, you know, sort of traumatic injuries could resolve 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
I had quit when I had my children. Now, I have been terribly impacted by this. I mean, incredibly, incredibly impacted.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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...
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Very easily. Because they often misinterpret the actions of the schizophrenic. They don't know the person. So they just, they keep being obstreperous or maybe high and therefore dangerous. So they are afraid too. And I sympathize with them.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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, and 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. Families now perhaps could be more tightly controlled by a court, but maybe have three psychiatrists interview your individual child.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Well, schizophrenia, I think, as an illness, and as far as the public perception of it as an illness, has been damaged by SAMHSA and other federal health agencies by conflating it with this whole recovery paradigm goal that they have, which is nice for people. People who have minor depression or, you know, are going through menopause, perhaps, or who have minor drug addictions.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Thank you so much for having me.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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, 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
That's when he first became psychotic. And this is an interesting point because he wasn't diagnosed right away. I can go on in that point.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
But he dropped out of high school, I think, late in his junior year, shortly after the SAT tests were taken. Yeah. 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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...
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
At that stage in life, many boys are already rebelling or trying somewhat dangerous behavior. It's 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
So they've learned how to be an adult, but, you know, the males have not. So they tend to tangle with the police more. That's my understanding, what I've seen.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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 mal-illness so badly that in that they have gotten rid of the mental health institutions. They've also legally impeded the family's ability to commit family members.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. 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,
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. You know, I'm quoting the prosecutor. And then he said they would be able to introduce Jonathan to the community mental health clinic.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
He still talks about it to this day, those experiences.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
The next real step in 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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, you know, shock, kind of shock technique or tactic.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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, you know, 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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 at the jail recognized there was something mentally wrong with him. But then this went back and forth.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
He was convicted. He still has a felony.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
all told me, yes, we used to do commitments for families. We would have to get two 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?
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
It's permanently that way. And that is one of the flaws in our system, 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. So I decided that he couldn't work. He couldn't hold a job. I mean, we tried that.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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 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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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. I mean, there's some variance there, but in general.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.
Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
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.