Colleen Scott: One Mother's Journey Through Schizophrenia

Welcome to Why Not Me the World? Podcast hosted by
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make you laugh, some will make you cry. Real life
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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 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, Yeah, well, thanks for having me.
Oh, it's my pleasure. I believe you said your son
is thirty five? Now is that correct?
Thirty five? Yes?
How's he doing now? Is he holding up? Okay, and
what does his daily routines look like today.
He's actually in the hospital right now, Okay, suicidal ideation,
which is not that common in the eighteen 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 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, 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?
Well, schizophrenia, I think as an illness and as far
as the public perception of it as an illness has
been damaged by SAMSA and other better all 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 bits,
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 durable.
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 seventeen.
And 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.
When you describe him as psychotic, What were some of
the behaviors of actions he exhibited that made you realize
he was struggling. What events led up to that point.
Well, he and his sister were one year apart in
their high school at the time, and both of them
took the SAT tests 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 twelve, but when you're seventeen eighteen, running
away just means CouchSurfing 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.
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.
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 seventeen eighteen roughly and the female
at thirty five, is very sad for the males because
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 thirty five would have maybe
gone to college, he had a job, he had children,
even have a marriage, 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.
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.
Well, that is the reason that your original cisnion was
million dollars is that it's my contention that the legal
community has failed this popular of schizophrenics and perhaps other
people with serious amount owness 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 hippolaws that kick in at the age of
eighteen with 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 Annabura, 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, 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, which was kind
of the replacement about forty years ago to the so
called State Hospital of yr which you know I grew
up with, having been born in fifty three. You know,
now we don't have those, but we do have these
community mental health clinics. Now, looking back on that, that
was a huge mistake.
Actually, that was my next question. 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 eighteen year old or nineteen year old
boy in the misbehavior it might be perceived to just misbehavior,
or maybe he's high on pod or something along those lines.
So it was it was very, very disastrous for Johnath.
Then he still talks about it till this day. Those experiences.
Now, once you followed their recommendations and that process played
out and he was actually incarcerated, what was the next
step of the journey?
The next real step in this journey did not happen
for a few more years. First of all, he was
kept not exactly but what the crime was that he
was charged with was a felony, which is kind of shocking.
And what his crime supposedly consisted in was stalking. But
what that really was was when he turned eighteen, 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. It's sort of a you know, shock
kind of shock technique or tactic. And 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, and then somebody in
ann Arbor in the court system there going back in
eighteen 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 criminals ability to stand trial,
so that indicate somebody of 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 walking. I don't know.
No one talks to you because now they're eighteen, 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.
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?
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 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 were had worked with the
mentally ill in the past all told me, Yes, we
used to do commitments for families. We would have to
get to psychiatrists and we would talk to family members
and we would commit these individuals for treatment. Often again
there 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 ports and the
judges and the lawyers that are involved with this and
the laws were shamed changed so that this couldn't be done,
so that family commitment was a kind of a thing
of the past.
Okay, So what happened after all of this, was you
able to get anything changed? Or is he still in
the system.
It's permanently that way, and that is one of the
flaws in our system, or big on the national level,
big flaw in our system. So I understand why they
closed down the so called state hospitals because they were
again in how they were 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 Covinity 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 Vietnam War broke out and
all that money was taken to fight that war.
That's very interesting thing. 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.
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 promonly the case with the parents. So I decided
that 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 turn 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 RECEIVESI benefits,
which is supplemental Security income, which is really quite a pittance.
I think it was eight hundred and fifty dollars a month,
but it'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. 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.
Yes, well, I started at the beginning researching and finding
out about programs and the city 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 NSC,
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.
That's interesting. What was that called.
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. Here finally
I ferreted out the name of the physician that was
in charge of it, and he's a sixty seven year
old lovely psychiatrist who hails from Italy. Now I had
lived in Italy for a year myself, so I felt
close to these gaiants and I think that might have
led to why I contacted him directly. I'm not through
the hospital at all, and wrote him a long letter
in my long hand and he called me back, So
then we were immediately in.
That's amazing, but I'm glad it worked out now. Once
you contact to the doctor and he was going back
and forth. How long did it take before the procedure
actually came to happen.
It's a matter of months. He was ready to go
with his study and needed people to volunteer.
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.
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 GBS 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.
Oh, so it was a year ago that this procedure
was done.
Less than a year.
Okay, have you noticed any change
at all in the past year or is it still
something that just takes time? Before you find out.
Well, there's been some changes, yes, in his schizophrenia.
Has it been positive changes?
I would I guess say good again. I'm often asked
by the group of psychiatrists the neurosurgeons who work with
Jonathan what my observations are because it's useful for their study,
and I hesitate to say much because I realized, 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, Godsmas, 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 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.
I suppose My main question is, after everything you've been
through your son's thirty five, navigating the jail system and
during 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.
Well, probably that I think there's a 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 you know, poor health due
to lack of money, lack of social stability. You know
that puts them at risk in many ways, you know,
a dangerous way, you know of traumatic injuries, could resolve
things of that nature. Those are my fears. And then,
of course my personal fear as mom, is that I
won't be here forever. I don't know if you notice,
but I started smoking again. Now I had never I
had spunk 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.
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?
So that's smoking zillion 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, I really do. What's his lifestyle
look like right now? Where is he living and how
is he getting along?
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.
Now that the 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.
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 vacancy. And you know, not just vacancy,
but these individuals that suffer from this disease have very
worse 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 asked them to leave because they don't
want them out there. They look dishoveled 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 association. But they do interface
with the braces at this point, so then they probably
may have a court case something like that.
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.
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,
you deal, will you know who knows.
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.
Very easily, because they often misinterpret the actions of the
schizoph They don't know the person, so they just they
keep being obstruporous or maybe hy and therefore dangerous. So
they are afraid too, and I sympathize with them.
Sure, sure, absolutely, it's a tough road for everyone involved. Yeah,
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.
Yes, And that is one reason that out of all
the groups I've seen over the years, including NAMMY 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 lobby, which is why I find up
with that group because I'm hoping to do that.
Yeah, it's a very tough situation. The average person has
no clue of what people go through on a daily
basis because then I associated with it. So it's really
tough for sure.
Absolutely, and the families and the fears 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. It 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 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 dealing with this
better than the current.
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.
Very true, there was a congressman a few years ago.
I can't remember his name right now, who's from down
east who was hit over the head by his schizophrenic son.
I think he was maybe nineteen or twenty at the time,
having an illucination, 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 picked this
mission up to improve the situation that you and I
just are discussing right now, because he was shocked and
even said in his 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 that, but it
was pretty awful.
Yeah, yeah, I mean, anytime that a person has an
event when they lose control of their focus in 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.
Thank you so much for having me.
Oh the pleasure it's been allmine. Thanks again. Thanks for
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