May 18, 2025 • 29 mins
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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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to why Not Me ?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:30):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the world.
Hi, I'm Tony Mantua.
(00:52):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Today we're honored to bejoined by Colleen Scott, a
resilient mother whose son hasendured a profoundly challenging
journey, with schizophreniamarked by countless obstacles,
in the pioneering trial brainoperation.
(01:12):
She's here to offer an in-depthaccount of her experiences,
bringing a wealth of knowledgeand perspective that promises to
enlighten us all.
We're truly privileged to haveher share her story with us.
Thanks for coming on.
Speaker 2 (01:28):
Yeah, well, thanks for having me.
Speaker 1 (01:30):
Oh, it's my pleasure.
I believe you said your son is35 now.
Is that correct?
35,?
Yes, how's he doing now?
Is he holding up, okay?
And what does his dailyroutines look like?
Speaker 2 (01:45):
Today he's actually in the hospital right now.
Okay, suicidal ideation, whichis not that common in the
18-year history that he's hadwith his schizophrenia, which is
his diagnosis.
His sister, karen, who isactually a doctor in Michigan as
well, has said that, mom, I'venoticed every year around the
(02:10):
holidays, which is a prettycommon thing, this does happen,
but in general I think he'sconsidered to be a difficult
case or a serious case ofschizophrenia.
Over the years I've seen littleadjectives hooked on in front
of it by various doctors duringvarious hospitalizations
sometimes paranoid schizophrenia, sometimes undifferentiated
(02:33):
things like that.
Speaker 1 (02:34):
Okay.
Do you see him getting thisunder control with the doctor's
help?
What's the overall outlook fromthe doctors on what his future
can look like?
Speaker 2 (02:45):
federal health agencies by conflating it with
this whole recovery paradigmgoal that they have, which is
(03:07):
nice for people who have minordepression or, you know, are
going through menopause perhaps,or who have minor drug
addictions Not that they'reminor, but you know what I mean.
They're not about to pass awayfrom overdose every night, but
you know about to pass away fromoverdose every night.
But you know, these things havebeen combined in these agencies
(03:29):
, that is to say, alcoholism anddrug addiction, a lot of mental
illness.
But the problem withschizophrenia and, I suppose,
some other serious mentalillnesses is that they are not
really curable.
Speaker 1 (03:42):
Yes, I totally understand that.
Just like with autism, that issomething that some people think
can be cured when it ultimatelycannot.
So autism and serious mentalillness can parallel each other.
For that I think you said heshowed signs of this around 17?
.
Speaker 2 (03:59):
That's when he first became psychotic, and this is an
interesting point, because hewasn't diagnosed right away.
Okay, I can go on in that point.
Speaker 1 (04:11):
When you describe him as psychotic.
What were some of the behaviorsor actions he exhibited that
made you realize he wasstruggling?
What events led up to thatpoint?
Speaker 2 (04:21):
Well, he and his sister were one year apart in
their high school at the timeand both of them took the SAT
test together.
He actually did better than hissister who, as I say, then went
on to get not only her MDdegree but several additional
degrees, fellowships, minordegrees in that field.
(04:42):
But he dropped out of highschool, I think late in his
junior year, shortly after theSAT tests were taken.
And so I'm saying that to pointout that he is natively
intelligent.
But he just withdrew socially,which is one of the warning
signs.
Also, he would run away.
(05:03):
I mean, it's not like runningaway when you're 12, but when
you're 17, 18, running away justmeans couch surfing at your
friends and refusing to comehome, refusing to respond to
parental direction, that kind ofthing.
He was at that time displayingsome of the normal kinds of
(05:24):
behaviors that schizophrenicswill display, which is called
psychosis, because they'redetached from reality.
Speaker 1 (05:32):
So after going through all of that, what did
you do next?
How long was it before youdecided to seek a doctor's
evaluation to get a diagnosis?
Speaker 2 (05:43):
That's kind of the million-dollar question and one
of the reasons I thought thispodcast could be helpful to
people because in our experienceand I think it's shared by a
lot of Americans when the malebecomes schizophrenic at the age
of 17, 18 roughly, and thefemale at 35, it's very sad for
the males because at that stagein life many boys are already
(06:06):
rebelling or trying somewhatdangerous behavior as part of
growing up as a male, so it'sharder to designate it as an
illness, I think, and they dotend to get involved with the
law, much more so than thefemales, who, by the time
they're 35, would have maybegone to college, had a job, had
children, even have a marriage.
(06:27):
So they've learned how to be anadult, but the males have not,
so they tend to tangle with thepolice more.
That's my understanding, whatI've seen.
Speaker 1 (06:37):
Well, that does make a lot of sense.
At what point in time was itthat he wound up getting
involved with the legal system?
Speaker 2 (06:48):
Well, that is the reason that your original
question was million dollars.
Is that it's my contention thatthe legal community has failed
this population ofschizophrenics and perhaps other
people with serious mentalillness so badly, in that they
(07:08):
have gotten rid of the mentalhealth institutions.
They've also legally impededthe family's ability to commit
family members.
They've also introduced HIPAAlaws that kick in at the age of
18, which prevent the familyfrom even knowing what's going
on if the child is hospitalizedat that age.
(07:30):
In my particular case, there wasa prosecutor in Ann Arbor,
michigan, which is where we wereall living at the time, upon
consultation, told us that inorder for Jonathan to get a
diagnosis, especially againsthis will because many times
these people have this anos,they don't know they're sick.
(07:53):
There's a term for it herecommended that we have him
arrested, believe it or not, inorder to get him in the system.
His quote In order to get himin the system.
His quote.
You know, I'm quoting theprosecutor.
And then he said they would beable to introduce Jonathan to
the community mental healthclinic, which was kind of the
(08:17):
replacement, about 40 years ago,to the so-called state hospital
of yore, which you know I grewup with, having been born in 53.
You know now we don't havethose, but we do have these
community health mental healthclinics.
Now, looking back on that, thatwas a huge mistake.
Speaker 1 (08:37):
Actually, that was my next question.
Did you follow through on thatand what were the results?
Speaker 2 (08:43):
Did you follow through on that and what were
the results?
It was an unmitigated disaster.
He was incarcerated.
He was subjected to solitaryconfinement.
One has to remember that thepeople who operate county jails
are not medically trained orparticularly sympathetic to
18-year-old or 19-year-old boysin their misbehavior.
It might be perceived as justmisbehavior, or maybe he's high
(09:05):
on pot or something along thoselines.
So it was very, very disastrousfor Jonathan.
He still talks about it to thisday, those experiences.
Speaker 1 (09:14):
Now, once you followed their recommendations
and that process played out andhe was actually incarcerated,
what was the next step of thejourney?
Speaker 2 (09:26):
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 wasa felony, which is kind of
shocking, and what this crimesupposedly consisted in was
(09:47):
stalking.
But what that really was waswhen he turned 18, his father
insisted that he go to apsychiatrist.
He refused again because of thenormal symptom of this disease,
especially early on, whereinthe patient doesn't know they're
ill and thinks everybody elseis crazy and there's nothing
(10:07):
wrong with them.
So at that point his fathersaid well, then you have to
leave home.
He was being rather disruptiveas well.
This was done as sort of ashock, kind of shock technique
or tactic, and at the same timethis prosecutor was being
consulted, because he would comeand sleep on the porch of his
family home every night and hisfather would say no, you have to
(10:31):
go, stay in your apartment orget a job, do this kind of thing
.
But he had no ability to dothat.
He hadn't yet been diagnosed.
So he was then charged withthis felony.
And then somebody in Ann Arborin the court system there, going
back in 18 years in my memory,but I'm quite sure I remember
(10:51):
the details.
He was then put in a forensiccenter which is designed to
determine the criminal's abilityto stand trial.
So that indicates somebody inthe jail recognized there was
something mentally wrong withhim.
But then this went back andforth.
They kept saying oh, we'vetreated him for two months in
(11:11):
this forensic center and we'renow sending him back to the
county jail so he can standtrial.
Probably the people in theforensic center didn't
understand how weak this casewas.
Regarding the blocking, I don'tknow.
No one talks to you because nowthey're 18 and there's very
little access or effort toinclude the family, which I
think is another failed aspectof the current system.
(11:33):
So that was pretty much thenext step, as you asked.
Speaker 1 (11:38):
Okay.
So once you went through allthat, jumped through all the
hoops, did he actually go totrial and if he did, what were
the results from it?
Speaker 2 (11:49):
He was convicted he still has a felony and then,
shortly thereafter, I realizedhow ridiculous this was and
called just about every lawyer Icould find in Michigan, which
leads to another interestingpoint for your podcast theme, in
that four or five lawyers Ispoke with who were listed, as I
(12:11):
forget exactly how I got theirnumbers and names at the time,
but had worked with the mentallyill in the past all told me yes
, we used to do commitments forfamilies.
We would have to get topsychiatrists and we would talk
to family members and we wouldcommit these individuals for
treatment, often against theirwill, because, again, they don't
(12:31):
know there's something wrong.
However, they said we no longerdo this because we're not
allowed to.
I said what do you mean?
You're not allowed to?
And they said the laws havechanged.
I think it's because there wasa Hollywood sort of scenario
that was often played out, wherefamily members would commit
their spouses because theywanted out of the marriage or
(12:52):
something along those lines, andso the courts and the judges
and the lawyers that areinvolved with this and the laws
were changed so that thiscouldn't be done, so that family
commitment was a kind of athing of the past.
Speaker 1 (13:07):
Okay, so what happened after all of this?
Was you able to get anythingchanged, or is he still in the
system?
Speaker 2 (13:16):
It's permanently that way and that is one of the
flaws in our system, our big onthe national level big flaw in
our system.
I understand why they closeddown the so-called state
hospitals because they were,again in Hollywood, often
highlighted as being horribleplaces that were full of abuse,
so there was a movement to shutthem down.
(13:37):
But then I've read the historyon this it was actually during
Kennedy's presidency where hecame up with the idea of this
community mental health clinicsystem.
But then he set aside all thisfunding, knowing that if it
wasn't well funded, especiallyinitially, it probably wouldn't
succeed.
But then the Vietnam War brokeout and all that money was taken
to fight that war.
Speaker 1 (13:59):
That's very interesting.
Now, once you got through allthat, jumped through all the
hoops what happened after he gotreleased, even though he's
still in the system?
Speaker 2 (14:11):
well, he was young enough and he had been very
popular in high school so he hadenough friends in our local
community in ann arbor.
Most of his friends had gone onto college but he did start a
career of couch surfing forabout two years but then even
his friends sort of cut him offbecause he was too bizarre in
(14:31):
his behavior and I think he mayhave frightened people.
So at that point I desperatelywas and I was getting no advice
at all, no counseling from any.
I couldn't find a lawyer tohelp me and I couldn't find a
doctor to help me.
I had no clue what to do, and Ithink this is commonly the case
with parents.
(14:51):
So I decided that I that hecouldn't work, he couldn't hold
up.
I mean, we tried that.
I took him to a few jobs andtried many times to get him
trained in things over thisthree-year period.
So I took him to the SocialSecurity Administration and he
was seen by a psychologist andit was determined that he would
(15:16):
receive SSI benefits, which issupplemental security income,
which is really quite a pittanceI think it was $850 a month but
that's not enough to live on.
And then I eventually got himhis adult disabled child social
security disability stipend,which is much more reasonable.
(15:38):
It's like the same amount youwould get when you retire.
Speaker 1 (15:42):
I mean, there's some variance there, but in general
Okay, Now you mentionedsomething about a study that was
performed.
Can you elaborate on that?
Speaker 2 (15:53):
Yes, well, I started at the beginning researching and
finding out about programs andthe system existed so that I
could help my son and eventuallyI found a little post on
Facebook.
I mean, this was years laterand I think it was posted by a
member of the NSSC, which is theorganization that actually
(16:16):
contacted you.
That's how I got yourinformation and contact
information and they justrandomly posted.
There was a study that wasabout to be begun at the Johns
Hopkins Hospital, which is avery famous research hospital in
Baltimore, maryland, and theywere going to do something for
schizophrenics.
That was new and unique.
Speaker 1 (16:38):
That's interesting.
What was that called?
Speaker 2 (16:41):
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 beenwritten up in a journal, a
research journal.
So I contacted the journaldirectly as well Got nowhere
with them either.
In fact, they even have aperson hired at Johns Hopkins
(17:04):
because they do so much research.
I imagine whose job it was tointerface with people responding
to the journal articles and insort of an almost like a
marketing, advertising capacityor PR capacity.
I contacted her.
I got nowhere with her either.
Finally, I ferreted out thename of the physician that was
(17:25):
in charge of it, and he's a67-year-old, lovely psychiatrist
who hails from Italy.
Now, I had lived in Italy for ayear 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 himdirectly, not through the
(17:46):
hospital at all, and wrote him along letter in my longhand and
he called me back.
So then we were immediately in.
Speaker 1 (17:56):
That's amazing, but I'm glad it worked out.
Now, once you contacted thedoctor and he was going back and
forth, how long did it takebefore the procedure actually
came to happen?
Speaker 2 (18:08):
Just a matter of months.
He was ready to go with hisstudy and needed people to
volunteer.
Speaker 1 (18:14):
Once the procedure was completed, how long did it
take for the effects to kick in,or was it something that
developed gradually over aperiod of time?
Speaker 2 (18:24):
That is a kind of an unknown, in that the doctor has
told me that he has three otherprevious study subjects who have
had the TBS surgicallyimplanted for about three years
and that it does take time.
It doesn't happen overnight, sowe're being very patient.
(18:47):
It's been less than a year,regina.
Speaker 1 (18:50):
Oh, so it was a year ago that this procedure was done
.
Speaker 2 (18:54):
Less than a year.
Speaker 1 (18:55):
Less than a year.
Okay, have you noticed anychanges at all in the past year,
or is it still something thatjust takes time before you find
out?
Speaker 2 (19:07):
Well, there's been some changes.
Yes, in his schizophrenia.
Speaker 1 (19:12):
Has it been positive changes.
Speaker 2 (19:14):
I would, I guess, say good.
Again, I'm often asked by thegroup of psychiatrists and
neurosurgeons who work withJonathan what my observations
are, because it's useful fortheir study, and I hesitate to
say much because I realizewhenever you're doing any kind
of a scientific observationalstudy, there's so many
(19:38):
conflicting causes for anychange.
It might just be the attentionhe's receiving, it might be
various things like the monththat I spent with him in the
hospital while he was initiallygetting worked up and when the
surgery occurred, so thatthere's been so many other
changes surrounding his lifeduring the period of this
(20:00):
intervention that I hesitate todraw any scientific conclusion
as to what the cause was.
Speaker 1 (20:08):
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 havea watchful eye on him for the
most of the time?
Speaker 2 (20:23):
The latter.
I don't think that he's goingto recover, but I'm hoping for
improvements, but I'm not hopingfor a miracle.
Speaker 1 (20:31):
I suppose my main question is after everything
you've been through your son's35, navigating the jail system,
enduring trials, working throughthe legal process, consulting
psychologists, even pursuingthis brain trial what's your
greatest fear now, as you lookahead to his future and the
(20:54):
possibilities that lie beforehim?
Speaker 2 (20:57):
Well, probably that I think there's a higher
percentage of suicides amongschizophrenics than the rest of
the population.
Their life expectancy isshorter and I'm sure that
includes their lifestyle.
By that I mean they're oftenhomeless, sporadically homeless,
if not permanently, and justpoor health due to lack of money
(21:18):
, lack of social stability.
That puts them at risk in manyways, a dangerous way, sort of
traumatic injuries could result,things of that nature.
Those are my fears.
And then, of course, mypersonal 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.
(21:39):
I had never.
I had smoked when I was ateenager.
I had quit when I had mychildren.
Now I have been terriblyimpacted by this.
I mean incredibly, incrediblyimpacted.
Speaker 1 (21:51):
I think you raise an important point that we should
address.
With so much stress at home andthe uncertainty surrounding
everything, how do you manage it?
How do you cope?
What strategies do you use tocope with the unknown?
Speaker 2 (22:09):
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 getthat.
Speaker 1 (22:18):
I really do.
What's his lifestyle look likeright now?
Where's he living and how's hegetting along?
Speaker 2 (22:26):
he's in a group home.
He's under AOT orders, whichdictated by a probate judge.
It's a special court.
It usually deals with wills andpeople who are dead, but it can
also deal with disabled peoplebrought in to adjudicate their
(22:46):
insanity, I suppose, and anyother related issues that come
up.
Speaker 1 (22:51):
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 straightso that he's been able to stay
away from the legal system?
Speaker 2 (23:04):
Yes, except for the times when he was in a new city
and wandered off and didn't knowhis surroundings and was
arrested for vagrancy.
And you know, not just vagrancy, but these individuals that
suffer from this disease havevery poor social interactive
(23:28):
skills.
So I can having not observed itdirectly, I can imagine, for
instance, if they're standing infront of a business in a
business district and the storeowner asks them to leave because
they don't want them out there.
They look disheveled andthere's no reason for them to be
standing in front of the storefor four hours, or something
like that.
Then of course the police arecalled.
(23:49):
Then they get picked up andthere's just a misdemeanor
associated, but they dointerface with the police at
this point.
So then they probably may havea court case, something like
that.
Speaker 1 (24:01):
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 onthat?
Speaker 2 (24:11):
Well, no, they don't.
Again, it depends on theofficers involved.
Now there are efforts to trainpolice forces and some cities
have taken up this kind oftraining and they have special
officers designated for thiskind of work.
But, of course, if that officeris not on duty, call, comes in
(24:31):
your dealer, will you know whoknows?
Speaker 1 (24:34):
Yes, that's a very tough situation.
Lots of times, if a policeofficer comes into a situation
that they don't know, they haveto make a decision in seconds.
Sometimes it can be the rightone, sometimes it can be the
wrong one.
If they're not trained, itcould easily go the wrong way,
which is very unfortunate.
Speaker 2 (24:56):
Very easily, because they often misinterpret the
actions of the schizophrenic.
They don't know the person, sothey just keep being
obstreperous or maybe high andtherefore dangerous.
So they are afraid too, and Isympathize with them.
Speaker 1 (25:10):
Sure, sure, absolutely.
It's a tough road for everyoneinvolved.
People have to understand thatnot everyone handles the
situation perfectly, which canmake things challenging to
navigate.
The key is finding ways,hopefully, to improve it so that
everyone involved can emergewith less harm, fewer problems
(25:32):
and the ability to move forwardmore easily.
Speaker 2 (25:36):
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 NationalAlliance of Mentally Ill and it
claims to advocate for thementally ill.
It doesn't do anywhere near anadequate job.
I think the NSSC has a focusand ability to do some direct
(25:59):
lobbying, which is why I signedup with that group, because I'm
hoping to do that.
Speaker 1 (26:04):
Yeah, it's a very tough situation.
The average person has no clueof what people go through on a
daily basis because they're notassociated with it, so it's
really tough, for sure.
Speaker 2 (26:19):
Absolutely, and the families and the fear.
It's absolutely overwhelmingfor families and maybe the
commitment procedure of old wasflawed, but to me it's like
throwing the baby out with thebathwater, because it is needed.
We need the ability to bringthat individual in some way in
(26:52):
conjunction with the communitymental health clinic or
something, so that they can finda neutral place so that the
person could be interviewed.
There's some I can imagine someway of dealing with this better
than the current situation.
Speaker 1 (27:03):
I agree Things do need to change.
The biggest thing, I think, isunderstanding.
I think all the people withinthe legal system and not in the
legal system need to understandwhat's going on.
Speaker 2 (27:15):
Very true.
There was a congressman a fewyears ago I can't remember his
name right now, he was from downeast who was hit over the head
by his schizophrenic son I thinkhe was maybe 19 or 20 at the
time having an hallucination,probably thinking his dad was a
cyborg or something.
(27:36):
I mean, I don't think he was atruly malicious child.
This poor congressman kind ofkicked this mission up to
improve the situation that youand I are discussing right now,
because he was shocked and evensaid in a statement you know,
here I'm a congressman, I can'tget anything done for my son and
then I ended up getting hitover the head, which he survived
(27:59):
.
The attack it wasn't you know,but it was pretty awful.
Speaker 1 (28:03):
Yeah, yeah, I mean.
Anytime that a person has anevent when they lose control of
their focus and their mind, it'sreally tough on everyone
involved.
So bringing more attention toit, raising awareness and
hopefully fostering a betterunderstanding could make a
difference.
With that said, this has been agreat conversation, great
(28:26):
information.
I really appreciate you takingthe time to come on and talk
with us.
Speaker 2 (28:31):
Thank you so much for having me.
Speaker 1 (28:36):
Oh, the pleasure has been all mine.
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
to you.
If you know anyone that wouldlike to tell us their story,
(28:56):
send them to TonyMantorcomcontact then they can give us
their information so one daythey may be a guest on our show.
One more thing we ask telleveryone, everyone everywhere,
about why Not Me, the world, theconversations we're having and
(29:17):
the inspiration our guests giveto everyone everywhere, that you
are not alone in this world.
Welcome to why Not Me ?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:30):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the world.
Hi, I'm Tony Mantua.
(00:52):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Today we're honored to bejoined by Colleen Scott, a
resilient mother whose son hasendured a profoundly challenging
journey, with schizophreniamarked by countless obstacles,
in the pioneering trial brainoperation.
(01:12):
She's here to offer an in-depthaccount of her experiences,
bringing a wealth of knowledgeand perspective that promises to
enlighten us all.
We're truly privileged to haveher share her story with us.
Thanks for coming on.
Speaker 2 (01:28):
Yeah, well, thanks for having me.
Speaker 1 (01:30):
Oh, it's my pleasure.
I believe you said your son is35 now.
Is that correct?
35,?
Yes, how's he doing now?
Is he holding up, okay?
And what does his dailyroutines look like?
Speaker 2 (01:45):
Today he's actually in the hospital right now.
Okay, suicidal ideation, whichis not that common in the
18-year history that he's hadwith his schizophrenia, which is
his diagnosis.
His sister, karen, who isactually a doctor in Michigan as
well, has said that, mom, I'venoticed every year around the
(02:10):
holidays, which is a prettycommon thing, this does happen,
but in general I think he'sconsidered to be a difficult
case or a serious case ofschizophrenia.
Over the years I've seen littleadjectives hooked on in front
of it by various doctors duringvarious hospitalizations
sometimes paranoid schizophrenia, sometimes undifferentiated
(02:33):
things like that.
Speaker 1 (02:34):
Okay.
Do you see him getting thisunder control with the doctor's
help?
What's the overall outlook fromthe doctors on what his future
can look like?
Speaker 2 (02:45):
federal health agencies by conflating it with
this whole recovery paradigmgoal that they have, which is
(03:07):
nice for people who have minordepression or, you know, are
going through menopause perhaps,or who have minor drug
addictions Not that they'reminor, but you know what I mean.
They're not about to pass awayfrom overdose every night, but
you know about to pass away fromoverdose every night.
But you know, these things havebeen combined in these agencies
(03:29):
, that is to say, alcoholism anddrug addiction, a lot of mental
illness.
But the problem withschizophrenia and, I suppose,
some other serious mentalillnesses is that they are not
really curable.
Speaker 1 (03:42):
Yes, I totally understand that.
Just like with autism, that issomething that some people think
can be cured when it ultimatelycannot.
So autism and serious mentalillness can parallel each other.
For that I think you said heshowed signs of this around 17?
.
Speaker 2 (03:59):
That's when he first became psychotic, and this is an
interesting point, because hewasn't diagnosed right away.
Okay, I can go on in that point.
Speaker 1 (04:11):
When you describe him as psychotic.
What were some of the behaviorsor actions he exhibited that
made you realize he wasstruggling?
What events led up to thatpoint?
Speaker 2 (04:21):
Well, he and his sister were one year apart in
their high school at the timeand both of them took the SAT
test together.
He actually did better than hissister who, as I say, then went
on to get not only her MDdegree but several additional
degrees, fellowships, minordegrees in that field.
(04:42):
But he dropped out of highschool, I think late in his
junior year, shortly after theSAT tests were taken.
And so I'm saying that to pointout that he is natively
intelligent.
But he just withdrew socially,which is one of the warning
signs.
Also, he would run away.
(05:03):
I mean, it's not like runningaway when you're 12, but when
you're 17, 18, running away justmeans couch surfing at your
friends and refusing to comehome, refusing to respond to
parental direction, that kind ofthing.
He was at that time displayingsome of the normal kinds of
(05:24):
behaviors that schizophrenicswill display, which is called
psychosis, because they'redetached from reality.
Speaker 1 (05:32):
So after going through all of that, what did
you do next?
How long was it before youdecided to seek a doctor's
evaluation to get a diagnosis?
Speaker 2 (05:43):
That's kind of the million-dollar question and one
of the reasons I thought thispodcast could be helpful to
people because in our experienceand I think it's shared by a
lot of Americans when the malebecomes schizophrenic at the age
of 17, 18 roughly, and thefemale at 35, it's very sad for
the males because at that stagein life many boys are already
(06:06):
rebelling or trying somewhatdangerous behavior as part of
growing up as a male, so it'sharder to designate it as an
illness, I think, and they dotend to get involved with the
law, much more so than thefemales, who, by the time
they're 35, would have maybegone to college, had a job, had
children, even have a marriage.
(06:27):
So they've learned how to be anadult, but the males have not,
so they tend to tangle with thepolice more.
That's my understanding, whatI've seen.
Speaker 1 (06:37):
Well, that does make a lot of sense.
At what point in time was itthat he wound up getting
involved with the legal system?
Speaker 2 (06:48):
Well, that is the reason that your original
question was million dollars.
Is that it's my contention thatthe legal community has failed
this population ofschizophrenics and perhaps other
people with serious mentalillness so badly, in that they
(07:08):
have gotten rid of the mentalhealth institutions.
They've also legally impededthe family's ability to commit
family members.
They've also introduced HIPAAlaws that kick in at the age of
18, which prevent the familyfrom even knowing what's going
on if the child is hospitalizedat that age.
(07:30):
In my particular case, there wasa prosecutor in Ann Arbor,
michigan, which is where we wereall living at the time, upon
consultation, told us that inorder for Jonathan to get a
diagnosis, especially againsthis will because many times
these people have this anos,they don't know they're sick.
(07:53):
There's a term for it herecommended that we have him
arrested, believe it or not, inorder to get him in the system.
His quote In order to get himin the system.
His quote.
You know, I'm quoting theprosecutor.
And then he said they would beable to introduce Jonathan to
the community mental healthclinic, which was kind of the
(08:17):
replacement, about 40 years ago,to the so-called state hospital
of yore, which you know I grewup with, having been born in 53.
You know now we don't havethose, but we do have these
community health mental healthclinics.
Now, looking back on that, thatwas a huge mistake.
Speaker 1 (08:37):
Actually, that was my next question.
Did you follow through on thatand what were the results?
Speaker 2 (08:43):
Did you follow through on that and what were
the results?
It was an unmitigated disaster.
He was incarcerated.
He was subjected to solitaryconfinement.
One has to remember that thepeople who operate county jails
are not medically trained orparticularly sympathetic to
18-year-old or 19-year-old boysin their misbehavior.
It might be perceived as justmisbehavior, or maybe he's high
(09:05):
on pot or something along thoselines.
So it was very, very disastrousfor Jonathan.
He still talks about it to thisday, those experiences.
Speaker 1 (09:14):
Now, once you followed their recommendations
and that process played out andhe was actually incarcerated,
what was the next step of thejourney?
Speaker 2 (09:26):
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 wasa felony, which is kind of
shocking, and what this crimesupposedly consisted in was
(09:47):
stalking.
But what that really was waswhen he turned 18, his father
insisted that he go to apsychiatrist.
He refused again because of thenormal symptom of this disease,
especially early on, whereinthe patient doesn't know they're
ill and thinks everybody elseis crazy and there's nothing
(10:07):
wrong with them.
So at that point his fathersaid well, then you have to
leave home.
He was being rather disruptiveas well.
This was done as sort of ashock, kind of shock technique
or tactic, and at the same timethis prosecutor was being
consulted, because he would comeand sleep on the porch of his
family home every night and hisfather would say no, you have to
(10:31):
go, stay in your apartment orget a job, do this kind of thing
.
But he had no ability to dothat.
He hadn't yet been diagnosed.
So he was then charged withthis felony.
And then somebody in Ann Arborin the court system there, going
back in 18 years in my memory,but I'm quite sure I remember
(10:51):
the details.
He was then put in a forensiccenter which is designed to
determine the criminal's abilityto stand trial.
So that indicates somebody inthe jail recognized there was
something mentally wrong withhim.
But then this went back andforth.
They kept saying oh, we'vetreated him for two months in
(11:11):
this forensic center and we'renow sending him back to the
county jail so he can standtrial.
Probably the people in theforensic center didn't
understand how weak this casewas.
Regarding the blocking, I don'tknow.
No one talks to you because nowthey're 18 and there's very
little access or effort toinclude the family, which I
think is another failed aspectof the current system.
(11:33):
So that was pretty much thenext step, as you asked.
Speaker 1 (11:38):
Okay.
So once you went through allthat, jumped through all the
hoops, did he actually go totrial and if he did, what were
the results from it?
Speaker 2 (11:49):
He was convicted he still has a felony and then,
shortly thereafter, I realizedhow ridiculous this was and
called just about every lawyer Icould find in Michigan, which
leads to another interestingpoint for your podcast theme, in
that four or five lawyers Ispoke with who were listed, as I
(12:11):
forget exactly how I got theirnumbers and names at the time,
but had worked with the mentallyill in the past all told me yes
, we used to do commitments forfamilies.
We would have to get topsychiatrists and we would talk
to family members and we wouldcommit these individuals for
treatment, often against theirwill, because, again, they don't
(12:31):
know there's something wrong.
However, they said we no longerdo this because we're not
allowed to.
I said what do you mean?
You're not allowed to?
And they said the laws havechanged.
I think it's because there wasa Hollywood sort of scenario
that was often played out, wherefamily members would commit
their spouses because theywanted out of the marriage or
(12:52):
something along those lines, andso the courts and the judges
and the lawyers that areinvolved with this and the laws
were changed so that thiscouldn't be done, so that family
commitment was a kind of athing of the past.
Speaker 1 (13:07):
Okay, so what happened after all of this?
Was you able to get anythingchanged, or is he still in the
system?
Speaker 2 (13:16):
It's permanently that way and that is one of the
flaws in our system, our big onthe national level big flaw in
our system.
I understand why they closeddown the so-called state
hospitals because they were,again in Hollywood, often
highlighted as being horribleplaces that were full of abuse,
so there was a movement to shutthem down.
(13:37):
But then I've read the historyon this it was actually during
Kennedy's presidency where hecame up with the idea of this
community mental health clinicsystem.
But then he set aside all thisfunding, knowing that if it
wasn't well funded, especiallyinitially, it probably wouldn't
succeed.
But then the Vietnam War brokeout and all that money was taken
to fight that war.
Speaker 1 (13:59):
That's very interesting.
Now, once you got through allthat, jumped through all the
hoops what happened after he gotreleased, even though he's
still in the system?
Speaker 2 (14:11):
well, he was young enough and he had been very
popular in high school so he hadenough friends in our local
community in ann arbor.
Most of his friends had gone onto college but he did start a
career of couch surfing forabout two years but then even
his friends sort of cut him offbecause he was too bizarre in
(14:31):
his behavior and I think he mayhave frightened people.
So at that point I desperatelywas and I was getting no advice
at all, no counseling from any.
I couldn't find a lawyer tohelp me and I couldn't find a
doctor to help me.
I had no clue what to do, and Ithink this is commonly the case
with parents.
(14:51):
So I decided that I that hecouldn't work, he couldn't hold
up.
I mean, we tried that.
I took him to a few jobs andtried many times to get him
trained in things over thisthree-year period.
So I took him to the SocialSecurity Administration and he
was seen by a psychologist andit was determined that he would
(15:16):
receive SSI benefits, which issupplemental security income,
which is really quite a pittanceI think it was $850 a month but
that's not enough to live on.
And then I eventually got himhis adult disabled child social
security disability stipend,which is much more reasonable.
(15:38):
It's like the same amount youwould get when you retire.
Speaker 1 (15:42):
I mean, there's some variance there, but in general
Okay, Now you mentionedsomething about a study that was
performed.
Can you elaborate on that?
Speaker 2 (15:53):
Yes, well, I started at the beginning researching and
finding out about programs andthe system existed so that I
could help my son and eventuallyI found a little post on
Facebook.
I mean, this was years laterand I think it was posted by a
member of the NSSC, which is theorganization that actually
(16:16):
contacted you.
That's how I got yourinformation and contact
information and they justrandomly posted.
There was a study that wasabout to be begun at the Johns
Hopkins Hospital, which is avery famous research hospital in
Baltimore, maryland, and theywere going to do something for
schizophrenics.
That was new and unique.
Speaker 1 (16:38):
That's interesting.
What was that called?
Speaker 2 (16:41):
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 beenwritten up in a journal, a
research journal.
So I contacted the journaldirectly as well Got nowhere
with them either.
In fact, they even have aperson hired at Johns Hopkins
(17:04):
because they do so much research.
I imagine whose job it was tointerface with people responding
to the journal articles and insort of an almost like a
marketing, advertising capacityor PR capacity.
I contacted her.
I got nowhere with her either.
Finally, I ferreted out thename of the physician that was
(17:25):
in charge of it, and he's a67-year-old, lovely psychiatrist
who hails from Italy.
Now, I had lived in Italy for ayear 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 himdirectly, not through the
(17:46):
hospital at all, and wrote him along letter in my longhand and
he called me back.
So then we were immediately in.
Speaker 1 (17:56):
That's amazing, but I'm glad it worked out.
Now, once you contacted thedoctor and he was going back and
forth, how long did it takebefore the procedure actually
came to happen?
Speaker 2 (18:08):
Just a matter of months.
He was ready to go with hisstudy and needed people to
volunteer.
Speaker 1 (18:14):
Once the procedure was completed, how long did it
take for the effects to kick in,or was it something that
developed gradually over aperiod of time?
Speaker 2 (18:24):
That is a kind of an unknown, in that the doctor has
told me that he has three otherprevious study subjects who have
had the TBS surgicallyimplanted for about three years
and that it does take time.
It doesn't happen overnight, sowe're being very patient.
(18:47):
It's been less than a year,regina.
Speaker 1 (18:50):
Oh, so it was a year ago that this procedure was done
.
Speaker 2 (18:54):
Less than a year.
Speaker 1 (18:55):
Less than a year.
Okay, have you noticed anychanges at all in the past year,
or is it still something thatjust takes time before you find
out?
Speaker 2 (19:07):
Well, there's been some changes.
Yes, in his schizophrenia.
Speaker 1 (19:12):
Has it been positive changes.
Speaker 2 (19:14):
I would, I guess, say good.
Again, I'm often asked by thegroup of psychiatrists and
neurosurgeons who work withJonathan what my observations
are, because it's useful fortheir study, and I hesitate to
say much because I realizewhenever you're doing any kind
of a scientific observationalstudy, there's so many
(19:38):
conflicting causes for anychange.
It might just be the attentionhe's receiving, it might be
various things like the monththat I spent with him in the
hospital while he was initiallygetting worked up and when the
surgery occurred, so thatthere's been so many other
changes surrounding his lifeduring the period of this
(20:00):
intervention that I hesitate todraw any scientific conclusion
as to what the cause was.
Speaker 1 (20:08):
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 havea watchful eye on him for the
most of the time?
Speaker 2 (20:23):
The latter.
I don't think that he's goingto recover, but I'm hoping for
improvements, but I'm not hopingfor a miracle.
Speaker 1 (20:31):
I suppose my main question is after everything
you've been through your son's35, navigating the jail system,
enduring trials, working throughthe legal process, consulting
psychologists, even pursuingthis brain trial what's your
greatest fear now, as you lookahead to his future and the
(20:54):
possibilities that lie beforehim?
Speaker 2 (20:57):
Well, probably that I think there's a higher
percentage of suicides amongschizophrenics than the rest of
the population.
Their life expectancy isshorter and I'm sure that
includes their lifestyle.
By that I mean they're oftenhomeless, sporadically homeless,
if not permanently, and justpoor health due to lack of money
(21:18):
, lack of social stability.
That puts them at risk in manyways, a dangerous way, sort of
traumatic injuries could result,things of that nature.
Those are my fears.
And then, of course, mypersonal 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.
(21:39):
I had never.
I had smoked when I was ateenager.
I had quit when I had mychildren.
Now I have been terriblyimpacted by this.
I mean incredibly, incrediblyimpacted.
Speaker 1 (21:51):
I think you raise an important point that we should
address.
With so much stress at home andthe uncertainty surrounding
everything, how do you manage it?
How do you cope?
What strategies do you use tocope with the unknown?
Speaker 2 (22:09):
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 getthat.
Speaker 1 (22:18):
I really do.
What's his lifestyle look likeright now?
Where's he living and how's hegetting along?
Speaker 2 (22:26):
he's in a group home.
He's under AOT orders, whichdictated by a probate judge.
It's a special court.
It usually deals with wills andpeople who are dead, but it can
also deal with disabled peoplebrought in to adjudicate their
(22:46):
insanity, I suppose, and anyother related issues that come
up.
Speaker 1 (22:51):
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 straightso that he's been able to stay
away from the legal system?
Speaker 2 (23:04):
Yes, except for the times when he was in a new city
and wandered off and didn't knowhis surroundings and was
arrested for vagrancy.
And you know, not just vagrancy, but these individuals that
suffer from this disease havevery poor social interactive
(23:28):
skills.
So I can having not observed itdirectly, I can imagine, for
instance, if they're standing infront of a business in a
business district and the storeowner asks them to leave because
they don't want them out there.
They look disheveled andthere's no reason for them to be
standing in front of the storefor four hours, or something
like that.
Then of course the police arecalled.
(23:49):
Then they get picked up andthere's just a misdemeanor
associated, but they dointerface with the police at
this point.
So then they probably may havea court case, something like
that.
Speaker 1 (24:01):
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 onthat?
Speaker 2 (24:11):
Well, no, they don't.
Again, it depends on theofficers involved.
Now there are efforts to trainpolice forces and some cities
have taken up this kind oftraining and they have special
officers designated for thiskind of work.
But, of course, if that officeris not on duty, call, comes in
(24:31):
your dealer, will you know whoknows?
Speaker 1 (24:34):
Yes, that's a very tough situation.
Lots of times, if a policeofficer comes into a situation
that they don't know, they haveto make a decision in seconds.
Sometimes it can be the rightone, sometimes it can be the
wrong one.
If they're not trained, itcould easily go the wrong way,
which is very unfortunate.
Speaker 2 (24:56):
Very easily, because they often misinterpret the
actions of the schizophrenic.
They don't know the person, sothey just keep being
obstreperous or maybe high andtherefore dangerous.
So they are afraid too, and Isympathize with them.
Speaker 1 (25:10):
Sure, sure, absolutely.
It's a tough road for everyoneinvolved.
People have to understand thatnot everyone handles the
situation perfectly, which canmake things challenging to
navigate.
The key is finding ways,hopefully, to improve it so that
everyone involved can emergewith less harm, fewer problems
(25:32):
and the ability to move forwardmore easily.
Speaker 2 (25:36):
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 NationalAlliance of Mentally Ill and it
claims to advocate for thementally ill.
It doesn't do anywhere near anadequate job.
I think the NSSC has a focusand ability to do some direct
(25:59):
lobbying, which is why I signedup with that group, because I'm
hoping to do that.
Speaker 1 (26:04):
Yeah, it's a very tough situation.
The average person has no clueof what people go through on a
daily basis because they're notassociated with it, so it's
really tough, for sure.
Speaker 2 (26:19):
Absolutely, and the families and the fear.
It's absolutely overwhelmingfor families and maybe the
commitment procedure of old wasflawed, but to me it's like
throwing the baby out with thebathwater, because it is needed.
We need the ability to bringthat individual in some way in
(26:52):
conjunction with the communitymental health clinic or
something, so that they can finda neutral place so that the
person could be interviewed.
There's some I can imagine someway of dealing with this better
than the current situation.
Speaker 1 (27:03):
I agree Things do need to change.
The biggest thing, I think, isunderstanding.
I think all the people withinthe legal system and not in the
legal system need to understandwhat's going on.
Speaker 2 (27:15):
Very true.
There was a congressman a fewyears ago I can't remember his
name right now, he was from downeast who was hit over the head
by his schizophrenic son I thinkhe was maybe 19 or 20 at the
time having an hallucination,probably thinking his dad was a
cyborg or something.
(27:36):
I mean, I don't think he was atruly malicious child.
This poor congressman kind ofkicked this mission up to
improve the situation that youand I are discussing right now,
because he was shocked and evensaid in a statement you know,
here I'm a congressman, I can'tget anything done for my son and
then I ended up getting hitover the head, which he survived
(27:59):
.
The attack it wasn't you know,but it was pretty awful.
Speaker 1 (28:03):
Yeah, yeah, I mean.
Anytime that a person has anevent when they lose control of
their focus and their mind, it'sreally tough on everyone
involved.
So bringing more attention toit, raising awareness and
hopefully fostering a betterunderstanding could make a
difference.
With that said, this has been agreat conversation, great
(28:26):
information.
I really appreciate you takingthe time to come on and talk
with us.
Speaker 2 (28:31):
Thank you so much for having me.
Speaker 1 (28:36):
Oh, the pleasure has been all mine.
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
to you.
If you know anyone that wouldlike to tell us their story,
(28:56):
send them to TonyMantorcomcontact then they can give us
their information so one daythey may be a guest on our show.
One more thing we ask telleveryone, everyone everywhere,
about why Not Me, the world, theconversations we're having and
(29:17):
the inspiration our guests giveto everyone everywhere, that you
are not alone in this world.
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