Denise Paley: From Crisis to Advocacy

Welcome to Why Not Me The World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make your laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me The World,
Humanity of a Handcuffs, the Silent Crisis special event. Joining
me today is Denise Paley. She will share her son's
experiences with a legal system, which inspired her to advocate
for legislative reform in her state. Thanks for coming on,
and can you tell us a little more information about
your son?
Okay, so almost five years ago to the date. So
it was January in twenty twenty. My son had previously
been an honor roll student in high school. He had
already been accepted to college. She was living a very normal,
seemingly high school senior life, had a lot of friends,
was on the varsity lacrosse team. He volunteered for unified sports.
On the surface, everything was going very well for him.
He was in this international baccalaureate program that we have
at our high school. He had to go to the library.
I think we were still on break. We were still
on the Christmas break. It was the challenge of it,
and he had to go to a library to work
on a project with some friends. They do a lot
of collaboration, there's a lot. There were only twenty kids
in the school that were in the program. He left
for the library, which was very typical to go work
on this project before they went back to school, and
he never came home. He's also very much a wool follower.
If our son didn't come home for dinner without telling us,
as his parents, we consider that very unusual behavior. She
didn't come home for dinner, he didn't call his dad,
and I started to call around to see if anybody
knew where he was. His brother was looking for him.
At the time, Snapchat was very popular. Trying to figure
out if anybody knew where he was. We drove by
the library, we drove by some friends homes, we called
some people. No sign of him. We found it. He
never showed up for the library for the group.
Wow, that's pretty scary. What did you do?
So we went to the police. He was in high school,
but he had just turned eighteen a few months before.
So we went to the police and said that they
would look for him, that they would, you know, put
out an alert to locate his his license plate. Everything's hindsight, right,
So now I have all of the recordings from the
police interactions. In all our phone calls, they completely dismissed.
Behind the scenes, they were saying things like, you know,
these parents think just because their sons at home, something's wrong,
probably medical ely, but you know, totally not interested in
us at all. At some point in the middle of
the night, I could see that he'd use my credit
card at a gas station about an hour and a
half from our home. So we called the police and
we said, all right, we could see that this happened.
At first, they sort of dismissed it. They're like, well,
if that was an hour and a half ago, he's
not going to be there. You can call the state
troopers and see if they can go by the gas
station and see if so, we did, we'd call the
state troopers. The state troopers go to the gas station.
Now it's like twelve thirty at night and he's asleep
at a restaurant. He's sleeping in the parking room. They
never asked him to get to the car. They talked
to him. They basically say, your parents are looking for you.
He's a little bit confused, you know. They ask him
where he is. He says he's someplace he was someplace
green like He's not really answered during very coherently. The
stage tripper calls our police department. They call me. I say,
we thought he was cargend so we weren't thinking a
psychotic Greek. And I'm like, if he's alive and he
is an hour and a half away from home, there
was something wrong. It's just not in his nature. He
doesn't like to drive anywhere ever. He's never driven further
than you gaven from her house, which is about twenty
five minutes away.
After all this happened, what was next?
So I tell the police officer if he is there,
sitting in a parking lot for since ten o'clock at night,
essentially from when he use a credit card, If he's there,
I just don't believe he can possibly be lucid. We're
in any condition to drive. Please hold him. My husband
and our neighbor start driving to Darien where he was.
A police officer tells me he is not having a
psychotic Greek that we can determine he's fine. He said
he was at with friends, which he never said because
I did see the reporting and they left and by
the time my husband and the neighbor got to the
rest up was gone. He never came home. He had
deleted all of his contacts in his phone, you know,
the phone was going straight to voicemail. No one can
get in touch with him. And the next day, in
the afternoon, we were going to the police over and
over and over again, you know, trying to show them,
like what normal behavior for our child was. We're showing
the police officer our text threat with him on New
Year's Eve because he wanted to a party New Year's
Eve overnight, Like we texted him, you know, he texted
us late at night to tell us he wasn't clumbling home,
and we texted him back and he text us back
within fifteen minutes, and just what normal looks like. Because
this is January fifth, so it's right after New Years.
So we're just trying to show like what normal is
for him. You know, you found him and Darien and
an hour and a half away from home. He didn't
go to school. Something's wrong, Like they wouldn't let us
report our car stolen. They said, if we reported the
car stolen, he would have a record. And they went
and't do it. And they said because we let him
use it, that it technically wasn't stolen. The next day
he approached a woman sitting in her car in a
parking lot and he sat during the leg multiple times.
And he has been in prison. He's still unsentenced. This
is a cute onset of first episode of schizophrenian.
With all this that was happening, what was next? You
have doctors, you have psychiatrists. How did you handle it?
So with how he was handled, mostly the issue with
the Department of Corrections is that it is not designed
to treat people with a serious mental illness. It is
where people with serious mental illnesses wind up going. You're
ten times more likely and wind up in prison than
you are in a hospital. So that's the statistic. He
was left essentially in a state of psychosis for three
and a half years. They did not treat a psychosis.
He had anisignosia, which I don't know if you know
what anasignosia is.
Yes, I'm familiar with it. Can you explain it for
our listeners? Oh?
Okay, So anasignosia is very common for people who are
truly experiencing psychosis. You can see things that are not
real and hallucinate, but that doesn't necessarily mean you're experiencing
a disconnection from reality. So that was the case with
our child. So he was truly experiencing psychosis where he
had no idea that he was sick. He appeared not
to us, but I could see how he could have
appeared not sick to somebody. But he got progressively worse
over the years. But at the time of his arrest,
you can still have a conversation, but you're so in
a different reality. You're just so living in a different reality.
So he had a belief about metaphysical being that could
destroy him, and not destroy him by kill him, I
mean destroy him by like create havoc in the universe,
you know, Like that was his mindset that was controlling
a lot of different factors in our world, and that
was his belief system at the time. He was less
that way for years.
That's just hard to imagine. So what happened next.
He'd been sent for competency restoration. He'd been sent to
our friends at hospital for a little while. You know,
we had bonded him oil but instead of bringing him home.
But all of his care at this point, once he
was arrested, was in the hands of the Department of Corrections,
so there was no opportunity to get him meaningful care.
And he'd broken his bond when he was out because
he was experiencing psychosis, yet he was never getting treatment.
Every time a psychosis while he was incarcerated would exacerbate,
he would be put in solitary confinement, which only makes
psychosis worse. So when you're living in incarceration, when you
have an exacerbation of your illness, your brain illness, you're
subjected to a strip search and then you're brought to
the infirmary. So it's very commetizing for the person who
is experiencing the episode, and then you're put in solitary confinement.
Was there any type of medication that he could have
been given that would have helped him through all this?
He was not given any And I said medication his
father and I advocated for him through the system for
three and a half years, it took three and a
half years for him to get medication that would treat
a psychosis. And then once he was given medication, he
was given medications like cocktailed medications that interacted with each
other and he became very toxic and got very, very sick.
So this was his experience from eighteen to twenty one
until just before his twenty second birthday. And then when
he turned twenty two, he was transferred to another prison
and there that has a population that is mostly people
with serious brain illnesses in our state. And when he
got there, he was so sick, he was toxic. They
ran blood work on him and saw how sick he was.
He literally collapsed upon arriving at this new facility. Then
they tweaked his medication. Within weeks, his hallucinations and delusions
weremitted completely and he has not had one since. So
it's been well over a year where he has not
seen this metaphysical being even once he has a full
grasp that he has said that he has an illness,
and he's been free from that state of porture now
for over a year, but he is still living in incruceration.
So his illness because he really was not able to
act in his own best interests for the first three years,
so he couldn't really get in front of a judge
because there are no provisions within this system to treat
an hiss agnosia or to treat him to get him
to a state where he would be well enough. There
seems to be a strong delay in the state of
Connecticut and adjudicating cases for people who have serious mental illness.
So in the state you are much more likely to
be unsentenced with serious mental illness than to be sentenced.
What's the reasoning behind that? Do they give you any
inclination at all?
Overall in the state and even where he's being held.
In the prison that he's in sures mostly people with
serious mental illness. Those people would mental illness that are there,
more of them are unsentenced than are sentenced. And the
greatest population that seems to be suffering in a state
of Connecticut are young men under the age of twenty six.
So the people with the greatest trajectory ahead of them
sit languishing in our prison system. This entire time, he
has not had any opportunity to further his education, not
that he really could have while he was so ill.
He's had no education, he's had no vocational education. He's
not allowed to have any contact. I've not hugged him
in almost five years. The only physical contact he receives
is being shackled and strip searched for visits to hearings
that have ultimately been continued. His case has been continued
forty eight times. In Januaryger will have our forty.
Nine what's your lawya is saying about this? Is he
giving any input at all?
No. In the beginning it was because he was ill,
and then a lot of it is just bureaucracy and
the way the system works in Connecticut, it just gets
kicked down the road. We show up and we leave.
We show up knowing that nothing's going to happen, and
then we leave for him. Every time he still has
to go, even though nothing constructive is going to happen.
So he is shackled. He has strip searched and shackled,
sometimes multiple times. Because transports are what they call the bullpen.
I mean, there's a say in the court system they
call it bullpen psychology. They go through this so many times,
they just give up and they take a plea deal
just because it is so psychologically taxing. We just want
to know what's going to happen to him. He just
wants to know what his fate is going to be,
just to be sentenced already five years. He has essentially
been discarded. He has been tacked physically, he's been mentally tortured.
He was one hundred and fifty five pounds at the
time of his arrest. He's probably two hundred and fifty
pounds now. There's no ex exercize, there's infrequent access to
fresh air. It's a brutal existence.
Wow. Yeah, that has to be just so tough. Because
of this, You've become an advocate for legislation to help
others correct Yeah.
One bill that I advocated very strongly for in different
iterations three times later, it is now the law. It's
for crisis intervention team training for police officers. I thoroughly
believe if any officer in our police department, because not
one officer in our police department had crisis Intervention team training,
even though it's a program available through the Department of
Mental Health and Addiction Services in our state, If just
one hadn't, maybe Ellis's trajectory could have been completely different.
Because listening to all of the audio conversations of the
police officers like I'm calling saying like he never came home.
You know you had him and he never came home.
And then the officer would say, this is a family
or this is not a police or you know, I'd
call back and then they would say the moment keeps
calling and she's ramping up again. The lieutenant would say,
you know what to do, get rid of her. They
just dismissed us completely.
This is one thing that I hear all across the
country and around the world that the police force really
needs help and better understanding to deal with situations like this.
A good thing I'm hearing is a lot of charities
and organizations are trying to work with the police to
help them out, to better inform them so they can
have a better understanding. Unfortunately, there is a downside, and
that's called it takes time.
Yeah, when you look at it, I mean I don't
mean Guildford, Connecticut, it's like a little zuburb It has
a very low crimary. You're much more likely as a
police officer to have a like a domestic situation like
what happened to us than to have to pull a
firearm for a serious, you know, dangerous situation. I think
the statistic is punt speaking with the police chief at
the time, it's more than half the co yet they
have no training. They had no training. So the law
now in Connecticut and it went into effect this year,
is if you're a new police officer Cutt's getting hired,
you have to have Crisis Intervention Team training and every
police department has to collaborate with the social worker. So
that is part of a bill that I testified for
and that my local senator had gotten off the ground.
Christine Cohen who covers Guildferd, Connecticut. I'm also the co
president of NAMI now for Noami Shoreline that covers Guildford.
So to go through Crisis Intervention Team training, DEMIS covers
most of it. It's a DEMIS program that goes through
the Connecticut Alliance to benefit law enforcement. But there is
a stipend that every officer has to pay. So our
Nommie Shoreline affiliate will pay for any officer within our
affiliate that will get the training that's grandfathered in and
doesn't have to get it or anybody before this law
went into effect, So we will pay the difference. There's
no cost at all to the police office, and we've
also paid for dispatchers to go get the training. Somebody
from the fire department wants to go get the training,
We're happy to pay for it. There have been instances
where people outside of our affiliate have wanted to get
the training and Cable has called us and said, hey,
they don't have the money, We'll pay for it. We
have the money, We've raised money, we have money set
aside to get more officers trained and to create awareness
around how important this is. So that is a lot
of what I've been doing. I attended the Prices Intervention
Training International Conference this year, getting more ideas for how
we can make it better within our state, and also
working with police officers who are so mentally taxed themselves,
so to get them into programs so that they can
get mental health services themselves.
That was my very next question, and it is twofold.
One is the police have such a burden put on
them with situations that they don't know and understand or
know how to handle yet, and that gives them a
very stressful situation. The second part is how are you
finding now that you're working on legislation to make it
more inclusive for all the people involved. How are you
finding the reception from the police precincts with the people
that are trying to help them and inform them to
make a better situation for everyone.
It really depends on the culture of the community. So
one that comes to mind that's been amazing, which had
never really embraced crisis intervention team training before. So Madison,
Connecticut is the town right next to where I live,
so I love in Guilford Medicine as the town right
next door, they kind of had a reputation for not
embracing such programs. But since we've been doing this, they've
probably sent more than I want to say. Well, I'm
not ready. I didn't prepare it, but I want to
say they've probably sent twelve police officers for crisis Intervention
team training. I feel like every class they send more
officers and they send their dispatchures, which I think is
so smart because they're the person taking the call and
if they have the wherewithal to say, you know what,
maybe I should be calling ninety eighty eight. Maybe that's
who needs to be involved. Maybe we need a cricess team,
and then we do have some communities where they haven't
really wanted to touch it. I'm not going to say
them on the podcast, but it's a shame because mental
illness does not discriminate. Neither does autism. It's in every community.
Neither it just dementia. It's in every community, and you
should have the training to meet people where they're at
for every safety.
Yes, I agree, one hundred percent. It doesn't matter whether
it's cancer, autism, mental illness. One thing in common. It
does not discriminate. It affects everyone, young, old, and everyone
in between. The only way that we can make this
better is what this month is all about. Awareness, acceptance,
and understanding. The more we get people to understand this,
hopefully the better society will be.
Yeah. I agree. I think Ellis, my son's name is Ellis,
and I think his experience has like really shined a
light on that too. What happened was very public at
the time. We lived in this little community, and you know,
all of this is kind of unfolding. It's almost like
an outer body experience. You never know how a community
is going to response. And the day happened, somebody left
dinner on our porch. Every single day well into COVID
people at meals, cards, a lot of wine, but just
notes letters. I think just as much people realized it
could be anybody. It could be anybody's child.
Absolutely. The one thing this country is, unfortunately, is if
it doesn't affect us, it's not a problem. When it
does affect a family, it does one of two things.
It either separates people or it brings them together. The
good thing here is that brought your community to get
other and good things came from it.
We were to this day being overwhelmed how supportive of
our community has been.
Yes, that's a testament to where you live. One where
do you see yourself? Let's say five years from now,
you're advocating, working on legislation. What's up next for you
since you started on this legislative journey?
So well, right now I'm working on another law. So
I just sent a concept to Christine for a timelier
treatment of mental illness for people who are either experiencing
psychosis or who have attempted to die by suicide. Because again,
if you attempt to die by suicide while you're incarcerated,
you go to solitary confinement. So to get timelier treatment
up front, it would save money for the state, and
it is just the humane thing to do. It would
also save a lot of lives. Too many lives are
lost for people living in incarceration because their mental health
needs are not met. It's like that what is that
maya Angelope quote like know better? Was you know better?
Do better? Do better? Be or what you know better?
Do better? Be better? I don't know. I think it's
something like that, But my poen is I had never
known anybody who'd been incarcerated in my life. I've known
people who've had serious brain illnessis before, but I've never
had an impact like this my family. It has changed.
I have another son who's in college now. It has
changed his life forever, my son's dad's life forever. Now
that I know there is such an unmet need and
there's so few people who are doing anything about it.
This is what I'm going to be doing.
Yeah, that's just so good that you're doing this. What
would you like to leave our listeners with things that
you think is important that they hear so they understand
what you've been through, what you're going through. That just
might help them if they ever have to go through
this themselves.
So for somebody who is going through something like this,
Look for the light like look for those glimmers, look
for where you be able to love and focus on them.
Because it's so overwhelming and so daunting, you really have
to notice where there's hope for people who are not affected.
We're all connected, we're all human beings. I encourage anyone
who hears this podcast and who knows. Once you know,
say something, speak out. You don't have to become an
advocate like you or I, but write a letter, make
it known, get it on the radar. Because people with
mental illness and people with autism, I mean, these are
very vulnerable populations. People who can need to speak out
for them.
Absolutely. So many people do not understand autism or serious
mental illness. They think it's a death sentence. It's not.
You have a twenty five percent of people who have
acute onset of schizophrenia, within the first few years it
will go away. They fully recover. I thought that schizophrenia
was a sentence forever. Learning more about it, it's not.
There's a good chance of recovery. Fifty percent of people
with schizophrenia will recover within ten years of their diagnosis.
So it all supports why early intervention matters, why you
need an interdisciplinary team at the onset of schizophrenia. People
need to know that full recovery is possible. Also, first
episode of schizophrenia is more delicate window because with the
first episode you really want to attack it right away
and treat it, and there's a mortality risk and early
mortality risk by not treating it. I think it's like
a twentyfold increase in early mortality for people between the
ages of sixteen and thirty. You don't treat the first
episode of schizophrenia. It's not the movies, you know what
I mean. It's not what sensationalized in the news. It
is a complicated rain disorder. Is no different than having
a sort of your body. It's an illness that can
be treated, and you know what, more so than other
disorders of the body, full recovery is possible. I can
say this and he is my child, but my son
has not had a hallucination or a delusion in more
than a year. This all happened within the first few
years of his on sense, he is, for all intents
and purposes, fully recovered. I have no reason to believe
you will have an episode ever, again, based on the data,
based on what is known about this illness. So people
shouldn't make it so taboo. People should be proactive in
reading it. If you think this is happening to your
loved one, be on top of it.
Absolutely, that makes perfect sense.
Another thing I'll tell you is that it was in
our family. We learned after this happened to my son
that it was in our family. Nobody had disclosed it
that he had the genetic predisposition. For this another reason
I encourage everybody, do not be afraid of stigma. My family,
Ellis's brother, his dad. We are in this with two feet.
We are not hiding from what it is. We are
trying to leave a better path behind us.
The problem is, I see it is that everyone looks
at schizophrenia as Norman bates, they look at it as
the worst possible situation. To be truthful. When I first
started this, there was a certain amount of stigma that
was with it. I questioned myself, do I want to
do this. Now that I've done it, I'm understanding it more.
I am able to have conversation with the people that
don't know and explain it more than I ever have
in the past. Unfortunately, people often fear discussing what they
don't understand, relying on misinformation, and they just listen to
the talking heads here on TV. If they dive a
little deeper, they find these conditions don't define a person.
Once they do that and share the knowledge, hopefully a
lot of people will help break down that stigma.
What I could not agree with you more. They want
to People want to like stick with their preconceived notion
and their existing biases, and then they're uncomfortable when they're
thinking about things another way. Schizophrenia it's not something that
happens on a dime, you know, people saying my son
left on paper, he went to the library and he
never came home to us. It was on a dime.
Now that we know more about it and what was
going on with him. Jackson had first appeared to him
at the library back in August, so this happened in January.
But because he did not know he was sick he
had and a signosia, he did not he didn't share anything.
I wonder and we can't go back. Had we known
it was in the family, would we have been looking
at things a little bit more closely, you know, our
son was eighteen years old. He was a senior in
high school. There were a few little nuances with his
behavior that were out of character. Were like, he is
trying to find his own way, you know, we didn't
really know what to make of it. On average, it
takes about eleven months for a doctor to diagnose someone
with schizophrenia, so it's not an easy diagnosis. There's actually
a program in Connecticut. It's called a mind Map and
it's through the Step program at Yale, and they're resource
for other doctors that they can call in, other psychologists
could call in to get help. And they have found
that they can reduce the diagnosis time from eleven months
down to five months. So people don't just wake up
in the morning and they're psychotic. It doesn't happen like that.
There's this prodromal build and it's very different than what
people have seen in the movies.
Yeah, that's so true. A lot of people, because they
hear this and we're advocating for change, think we're against
the police, and I think they need to understand that
we're really not.
Yes, just for their I'm not anti police either. All
of these crisis intervention trained officers they're all police officers,
and I'm grateful for them, and I really think it's
a matter of education. I'll tell you this real quick.
I was at a restaurant recently, and this happens every
once in a while, just because sometimes somebody will know
me because of my son, but I might not know
who they are. I was at a restaurant and I'm
having dinner with a couple of girlfriends. A man and
his wife come over. You know, I'm like, in my head,
I'm like, I'm running through the rolodecks. Do I know
them from school? Do I know them from the kids?
Do I know them? Did I live in their neighborhood?
Like I'm trying to figure out where I know them from,
asking me about Ellis and how's he doing, and they're
just like on the verge of tears. So I'm thinking,
was Ellis's friends for their kids? I couldn't figure out
they actually asked if they could hug me. So months
go by and I'm like, how do I know them?
And one of them was one of the police officers
that was involved that was saying, I don't know, you know,
I don't know. The mom says, I'm sure he's just
missed somebody, you know, and I realized it afterwards, and
then it occurred to me, like I just feel compassionate
for this man, you know, like we're.
All in this absolutely Well, this has been great, great conversation,
great information. I really appreciate you coming on well, Tony.
It was great meeting you and speaking with you, and
I applaud you for what you're doing. And I'm grateful
to you for you know, again, like when I said
you want to look for the light, You're one of
those lights. Thank you so much, Tony. I really appreciate it.
It's been my pleasure. Thanks again. Thanks for taking the
time out of your busy schedule to listen to our
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