March 6, 2024 • 27 mins
When his son was diagnosed at the age of 19, this father embarked on a relentless search for solutions. But the road ahead was filled with uncertainty and challenges.
After many years without a solution, he found Family and Children's Services NAVIGATE program – the key that unlocked a brighter future for his son. And with a clear diagnosis and access to specialized support, a transformation happened.
Join us for this special episode as a father bravely tells his story and provides valuable insights.
We've chosen to record this episode anonymously because we want to create a safe space for sharing honest experiences.
Check out these other complimentary episodes:
Episode 11: FCS's supported employment program is tailored for individuals grappling with serious mental illnesses such as schizophrenia.
Episode 12: Learn more about FCS's NAVIGATE program which focuses on early intervention for individuals encountering first-episode psychosis.
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Thank you once again for accompanying us on the journey. Until next time!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to OK State of Mind apodcast by Family and Children's
Services based in Tulsa,Oklahoma.
This podcast seeks to satisfyinquisitive minds eager to delve
into the realm of mental healthand overall well being.
Join us on a journey to gaininsights into the intricacies of
the human psyche, drawinginspiration from stories of
resilience and hope.
(00:21):
Together, we'll unravel thefascinating science, the
invisibilia, that underpins ourbehaviors, Shedding light on the
whys behind our behavior and ouroverall mental health, our goal
is to empower, educate, andinspire you with actionable
insights that you canimmediately use in pursuing your
own mental well being.
(00:41):
In our last two episodes, wespoke to leaders from FCS's
supported employment programtailored for individuals
grappling with serious mentalillnesses such as schizophrenia.
And we also spoke with FCS'sNavigate program, which focuses
on early intervention forindividuals encountering first
episode psychosis.
Navigate aims to deliverpersonalized care that fosters
(01:02):
recovery and long term wellness.
These two episodes can provideour listeners with background
information about today'sconversation with a very special
guest, a father who has walked adifficult path of navigating his
son's journey withschizophrenia.
When his son was diagnosed atthe age of 19, this father
embarked on a relentless searchfor solutions, but the road
(01:24):
ahead was filled withuncertainty and challenges.
After many years without asolution, he found Family and
Children's Services Navigateprogram.
For this father, Navigate becamethe key that unlocked a brighter
future for his son.
And with a clear diagnosis andaccess to specialized support, a
transformation happened.
I'm your host, Dee Harris, andtoday we'll delve into his
(01:44):
journey exploring the highs andlows, and uncovering the power
of perseverance and theimportance of finding the right
support system.
So we've chosen to record thisepisode anonymously because we
want to create a safe space forsharing honest experiences.
Welcome to Okay State of Mind.
Thank you.
Glad to be here and talk withyou today.
Yeah, so great to have you.
So first of all, tell me just alittle bit about your journey
(02:08):
into this space of not reallyunderstanding what was happening
with your son?
You know when we got thediagnosis, my son was about 19
and a lot of lights turned onand dots connected for symptoms
that went back to reallyelementary school that presented
as maybe ADHD, Maybe just anangsty preteen who, you know,
(02:30):
didn't want to do what hisparents said, you know, a lot of
those things that just look likeother things, things that might
not be as severe or aschallenging.
And so, we began, I think asearly as maybe fourth grade.
talking with school counselorsand teachers, with talking with
therapeutic counselors, withtrying different types of
medicine.
(02:50):
I think ADHD was the firstcondition that we sought meds
for.
And went through a series ofdifferent therapists and a
series of differentpsychiatrists for medication.
And nothing really workedbecause we probably, well, we
were not treating the underlyingissue.
So although, schizophreniatypically sets in in the late
teens, early twenties I justwonder if some of those things
(03:13):
were earlier for him or if, it'sa spectrum, you know, it's never
just an on switch.
It's, when do things startpresenting?
And for him, it was very earlyon.
So.
We, at some point I think he hadfinished high school and it was
really starting to hit him, theillness.
And he just got to a point wherehe said, I'm, I'm tired of
feeling like this.
And, he sought help and he cameto his mom and I and said, you
(03:37):
know, I'm ready to do somethingdifferent.
And so we went and got anevaluation at a, local mental
health organization and foundout that it looked like it was
probably schizophrenia.
They initially had someone whoruled him out for that and we
sort of found out later that,maybe the symptoms weren't as
strong, whatever the case maybe.
(03:57):
And so another year or so wentby.
And I reached out to Family andChildren's Services and said I
don't know exactly what he'sgot.
He's, was considered forschizophrenia, considered for
bipolar, sort of a host ofdifferent things.
And found out that there is thiswonderful program here called
Navigate that's a, tremendouswraparound.
services program and for him, itwas the thing that made all the
(04:18):
difference.
It was the key.
Having, an actual diagnosis andthen having a program designed
for young people withschizophrenia just like him
started turning things around.
So that's sort of it in anutshell.
Navigate has been part of theFCS.
group of programs since 2016, itis a first episode psychosis
program.
So it's for like ages 16 to 30for individuals that experience
(04:41):
first episode because the way Iunderstand it, is that if you
can diagnose it early enough,you can Treat it to the degree
that you can live with thesymptoms or manage the symptoms.
Because there's a lot of mentalhealth disorders, that are
treatable and curable in a way,but schizophrenia is not one.
Right.
He'll have this forever.
(05:02):
And so his goal and our goal isto ask the question and then
move towards what does his bestlife look like for him.
And I'll tell you the shortanswer for those who are either
dealing with this or wonderingabout it or maybe know someone.
schizophrenia is not what younecessarily see in the movies.
If it's untreated it can be avery unpleasant experience for
that person and their lovedones.
(05:23):
My son today on medicationconsistently and in therapy.
If he didn't know he hadschizophrenia, I'm not sure that
you'd know.
Right.
So.
Well I'm a parent and I know howdifficult and emotional it is to
have a child that might be sickor feeling unwell or you don't
understand the symptoms or youget a misdiagnosis.
I know that must have been arollercoaster for you and your
(05:45):
family.
I'd like for you to talk alittle bit about that piece of
it, how you finally got therefrom fourth grade on and then
got help and what did that looklike for you personally?
Well, Thinking back if it wasaround fourth grade and then
diagnosed at age 19, you'relooking at roughly a 10 year
period or so and at some pointin probably middle school, it
(06:09):
was a level of frustration.
Particularly high school whereit was really starting to set in
a little bit more, probably.
Where you're just sort of atyour wits end as a parent, but
you don't know what it is.
And so a lot of whatschizophrenia, you know, one of
the symptoms or parts of it isthat people with this condition
have a hard time seeing the bigpicture.
So in other words, if I don't dothis, then here's the
(06:31):
consequences if I don't study orif I don't, you know, whatever
it is.
And so as an example, I thinkone of the coping mechanisms he
developed early on was just flatout lying about things because
he constantly had authorityfigures parents, teachers,
coaches, whatever it may be,saying you didn't do something
you were supposed to do.
And so, again, I said before alot of this presented as just an
(06:53):
angsty teen who had issues withauthority.
And for us, You could just pullyour hair out with frustration
dealing with some of this,dealing with emotional outbursts
and dealing with, a kid who wasin the gifted and talented
program, but then would have anF on an assignment where you're
just, you know, he'sintellectually capable of better
but for some reason didn't dowhat was needed to be done.
(07:15):
And so, it's hard to get to aplace where you just give up on
a child.
And we didn't get there, butthere were many times where we
felt close.
And I think, during thoseteenage years, a lot of what I
thought was he's going to growout of it.
He's going to grow out of it.
We're going to find, you know,just keep trying, keep trying
switch therapists, switch medsyou know, whatever it might be,
or he finishes a school year andbarely makes it out.
(07:37):
And we go, okay, we're going tohave some conversations this
summer and next year, nextyear's the year we're going to
pull it together and learn howto stay on top of things.
And just never really got thereconsistently because he wasn't
getting proper treatment.
Right.
Yeah.
So it was an epiphany.
A lot of people, when I shareopenly that my son was diagnosed
with schizophrenia a portion ofpeople give me condolences, I'm
(08:00):
so sorry to hear that.
Oh my goodness.
And what was that like?
Oddly for me, it was 95 percentrelief.
Sure.
Because now we've got a name forit.
Now we know what it is.
And we can start, working on thesolution.
Absolutely.
Navigate early episode psychosistreatment is really a game
changer for so many families inour community.
But, I know that you talk aboutwhen you say to somebody my son
(08:24):
has schizophrenia.
There's all kinds of perceptionsand judgments and stigmas.
From your perspective, what doyou think it is?
I think it, you know, my gutreaction, it's two things.
One, there's still a stigmaaround mental and behavioral
health where we're afraid totalk about it which is very
unfortunate.
We can come back to that in aminute.
I think the other thing for meis that I think pop culture from
(08:48):
Hollywood to books to whateverit might be.
tends to take a caricature of acertain condition.
We'll use schizophrenia as anexample or just mental illness.
And we can all probably thinkback in our minds to, you know,
scary movies, TV shows, books,whatever it might be where
someone with a mental illness isyou know, I'm, I don't want to
stigmatize people and use thesewords, but the characters they
(09:09):
create they might not becompletely fictional, but they
are the most extreme, worst casescenario of that condition.
And just the way we do withrace, gender, ethnicity, you
know, whatever it might bewe're, slowly, painfully
learning a lot about how we'vecharacterized people in groups
and cultures.
And so as I have shared thiswith people I just decided I was
(09:30):
going to be open about it so insocial circles and even in
business settings, when it'srelevant, I reference that my
son has schizophrenia and here'swhat we're doing and we've
learned a lot and with righttreatment, life can be great.
Not only has no one reactednegatively, I'm surprised how
many people are more than justempathetic, but share some
(09:50):
similar lived experience thatthey have with some kind of
mental illness with them or withtheir family.
So yeah, I think the more we cantalk about this and the more we
can all be open about it becauseeveryone's dealing with this,
either ourselves, I have ananxiety disorder and I take
medication for it.
And I've learned that I'mbetter.
You know, some people havedepression, some people have
bipolar or more significantthings like schizophrenia.
(10:11):
So I think the more we talkabout it and the more as we've
done with other social movementsand Hollywood and whatnot, the
more we can portray people andcultures accurately instead of
the worst case scenario of that,the better we'll be.
I'd love to hear more about yourexperience with the program
itself.
Yeah.
Well, it's eyeopening becausethe program has multiple
(10:31):
components for both the patientand their family.
So for the patient, there is atherapist.
There's a psychiatrist whoprovides meds.
Those two talk together asneeded to dial in either the
therapy sessions or medicationsso the right hand knows what the
left is doing, so to speak.
And there's also an educationaland vocational coach that can
help find ways when they'reready for the patients to
(10:54):
explore, you know, career andjob opportunities.
And all of those people talk.
The fourth component is atherapist who's available for
the family to talk with, becauseit's difficult for the family as
well just like any other, youknow behavioral or substance
abuse issue, whatever it mightbe, those of us living with and,
and loving these people have ourchallenges.
(11:14):
So, when you think about it, tome, the structure of Navigate is
so obviously beneficial that I'msurprised that it hasn't been
around even longer than 2016 or,or the year that you mentioned.
At least in Tulsa.
Yeah, in Tulsa, you know.
Yeah.
Again, I think I have toldpeople over the last few years
as we've dealt with this thatit's remarkable as a society, we
(11:36):
are so far behind with mentalHealth in our awareness of it,
our empathy towards it and eventhe services as great as
Navigate is.
You know, I always, jokingly saywe can land robots on Mars, but.
We drive by someone sleeping ona bench or under a bridge and
say, well, that guy just needsto get a job, you know, and stop
being lazy or a number of otherexamples.
(11:56):
The empathetic piece ofunderstanding where somebody
came from and what I love aboutthe name Navigate by the way is
it actually was named that toconvey the goal of helping
people or guiding people.
With first episode psychosistowards functional health and
providing them with services andall the things that they needed
so it was this Guidingprinciple, which I think is a
(12:18):
really lovely concept, too Yeah,and I think what I have seen is
if you can take someone dealingwith an SMI, Severe Mental
Illness and get them a littlebit stabilized, get them on
track for treatment, feeling alittle bit better, even when
they're medicated properly andhaving good therapy.
It's, still going to be a littlebit of a stretch for that person
(12:38):
to go find a job.
So for a program like Navigateto say, okay, you're ready.
You're doing well.
Therapy's going well.
Meds are going well.
Let's go to a job fair together,which is what happened with my
son, among other things.
But his job coach actually wentto a job fair with him, walked
around to the differentemployers, introduced him.
He at the time had been living abit like a hermit with mom and
(13:00):
dad kind of back and forthbetween our houses.
And you know, got into a spiralwhere he had some social anxiety
about even just getting outthere.
So even though he was on antipsychotic and going through
therapy and understandinghimself and others around him
much better, that next step of,okay, now you got to go apply
for a job.
That was a scary thing.
I think it's a scary thing forso many people, even not dealing
(13:23):
with an SMI.
It's like just another hill ormountain you have to climb over
and just being so brave in that.
Absolutely.
And when you have someone withnavigate saying, okay, I'm going
to go with you and I'll approachthese people first and then
introduce you to them.
When he told me that, he's like,dad, she's going to go there and
talk to them first and kind ofget things ready for me.
(13:45):
I mean, I could just see a worldof weight lifted off of his
shoulders.
Wow.
And following up on that notdoing.
Total applications andinterviews for him, but reaching
out to employers by telephoneand saying, Hey I've met with
this guy.
I think you can really like him,here's what some of his skills
and interests are What ended uphappening was he got a job.
Excellent.
And now he's filling a role witha local manufacturer who needs
(14:09):
workers.
So he's making money and he'spaying taxes and he's buying
probably more drive throughmeals than we think he should.
But you know, Hey, it goes tothe tax base.
He's buying gasoline.
And so, now he's being aproductive member of society and
without navigate, that wouldn'thave happened.
There's no question in my mind.
Wow.
So yeah, I'm sure that he wasfearful of judgment.
(14:30):
Do you talk about that with yourson or is that something that is
just part of it now at thisstage of the game?
You know, he was afraid ofmental health judgment as well
as just someone who hadn'tworked for a while.
Right.
And so at this point.
He's very self aware and thingsare what they are and so he
talks about his psychoses, talksabout his meds he's an open
(14:53):
book.
And an interesting thing for himthat has happened that I've
noticed has increased aftergetting involved in Navigate and
just being more well than he wasbefore.
He writes music and plays andrecords on guitar, ukulele,
piano.
And for him, you know, we allhave our different outlets.
For some people it's journaling,for some people it's talking
with a friend, whatever it mightbe.
(15:13):
For him, he's even more openabout his condition with his
music.
And he might be even with me whoI don't think he's uncomfortable
with.
something about putting music tolyrics that lets him get a
little bit more descriptive, alittle bit more detailed.
So that's great to see him doingthat.
No, it's really great.
I mean, art is such a wonderfuloutlet I think there's so much
science behind just how it helpsthe brain.
(15:34):
I just love that.
Yeah.
Okay.
As a parent, and you're seeingyour child not feeling well or
exhibiting certain behaviors,you don't know exactly what's
going on.
You get to the point that youdid, you get a diagnosis
finally.
And so what advice do you havefor other individuals who might
be dealing with something likethis One for myself personally,
(15:55):
I tried as long as I could toresist getting medication for my
anxiety and I wasn't fully awareat the forefront of my mind
about it, but it was my ownstigma.
about being quote unquotemedicated.
I didn't want to be that guy.
And so I tried therapy.
I tried reading books.
I tried to just be more selfaware.
And at some point, I don't knowwhat the tipping point was for
(16:18):
me.
I just decided I'm gonna go see,if medication might help.
I thought I had depression andit turns out it was anxiety.
I got on meds for a few years.
I decided to maybe to try nottaking meds and it wasn't good.
And so what I tell people,because I still hear a lot of,
Oh, well, if you're not on meds,that's a good thing.
Or, you know, there's this fearabout it.
(16:40):
And I'm all for trying somenaturopathic remedies, or
therapy, or other things andletting medications be last
resort.
But don't be afraid of it.
Try it.
I don't take the largest dose.
You might not need that either,if you're someone who could
benefit from medication.
For me, Nothing has helped theway meds have.
With my son taking anantipsychotic, nothing has
(17:02):
helped the way the meds have.
So the first thing is don't beafraid of that.
I can't change people's beliefsystem who are just anti
medication, but I would hopethat maybe people would open
their mind just a little bit.
The second thing would be, youknow, there's all these things
in life that you think, well,that'll never happen to me or
that's not me, right?
And I, again, because of popculture, because of people not
(17:24):
talking about it, I never in amillion years imagined that,
someone in my family much lessmy son would have schizophrenia.
And so it wasn't that I wasaware and resisted.
It was just so big and sodifferent and so scary of a
diagnosis that it'd be likeasking me if I think I could
ever go to the moon.
I just would have never imaginedit's not even on my radar.
(17:46):
So I think if you're dealingwith things and you're several
years into struggling and you'vetried different therapists and
different solutions, you mightjust open your mind that, Hey,
this might be bigger and moresevere than what we're thinking.
And.
That's not the end of the world.
Right, You know, if it's, youknow, we hear schizophrenia,
bipolar, some of these other,psychotic depression, some of
(18:08):
these other terms and theysound, I promise you, they sound
way scarier than they really areSo how has, how has life changed
now that your son has beendiagnosed, has a job.
I know you've touched a littlebit on it, but has your life
changed in how you approach lifeor how you approach the world or
(18:29):
other individuals?
Yeah, you know not only is itdifferent for him and how we
talk, I think one of the thingsthat's important with some of
these conditions for thefamilies and, and friends and
loved ones is changing yourexpectations, of how that person
views the world and the thingsthat matter to them.
And so because I think with myson, even on medications and
(18:49):
staying in therapy, every dayisa struggle for him And so I
find I'm far less, reactionaryto him as a father, as a
disciplinary So it's allowed meto kind of meet him where he is
and love him for who he is.
You know, he made cookies todayand they were delicious and, you
know, sprinkled confectioner'ssugar on them.
And I mean, a couple years agobefore Navigate, he had a hard
(19:10):
time leaving his bedroom.
He's, he's being productive andcreative with food as well.
But your other question, how ithas changed me separate from
him, I see society verydifferent and people very
different.
There are public things thathappen that are a result of, I'm
going to say, so you mentionedyou're not a scientist.
I'm not either.
I work in a totally differentcareer, so I'm not a therapist
(19:31):
and I only know what I know as afamily member and a patient
myself.
But, you know, a very extremeexample a year or two ago at the
Oscars, Will Smith famouslyslapped Chris Rock on stage.
And so I don't bring this up tokick a man while he's down, but,
prior to my son's experience andmy own experience with mental
health issues, I probably wouldhave thought, oh, what a bizarre
(19:52):
thing to do.
But in my journey, the moment Isaw that, I saw trauma.
I saw someone with probablywhether it was you know,
childhood or whatever it is,just, just issues, you know,
mental health is a combinationof nature and nurture, as they
say.
And for my son and it's probablyboth for everybody.
For my son, it's a lot morenature.
(20:12):
There's different chemicalsgoing on in his brain than for
the rest of us.
For what we saw at the Oscars.
That might have been some lifeexperiences.
You know, we all have workedwith maybe a coworker who people
just roll their eyes and thinkis kind of a toxic person or,
you know, whatever that is.
Maybe it's a family member orsomeone in a friend group that,
you know, people who aren'tclose enough for us to really
engage and go, what's going onwith you?
(20:34):
And it lets me see that behaviora little bit differently.
I don't excuse it.
You know, bad behavior doesn'twork.
There's a reason you can't justbreak the speed limit or
whatever it might be.
But I can see that now and holda little place in my mind and my
heart for grace for that personor those people.
And that feels really good.
Oh, I bet.
It's like stepping into somebodyelse's shoes.
(20:56):
It's knowing that you don't knowwhat somebody else has
experienced in their life andwhy they are where they are.
What you're saying is what'sreally important here.
And the only thing that's reallyimportant is that you love your
child unconditionally and thatmeans allowing them to be who
they are, whoever that personis.
That's right.
I've always loved my son, bothof my children.
(21:16):
But for a lot of years before wewere on a path to wellness for
him, I wanted him to fit in themold of, The things you
typically think of for a son,you know, pick up after
yourself, help with chores, dowell in school be polite when we
go out to dinner, you know,whatever those things are as we
raise our kids.
And a lot of those things werereally difficult and it was
frustrating for me to not beable to get him in that mold
(21:37):
that I wanted him to be.
And I think it took somethingthat's extreme for me to just
go, okay, I can now sit on thecouch with my son and just talk
with him about what's on hismind or whether it's, you know,
watching a football game or thenews of the day and just talk.
And it's great.
Although I couldn't have beenthere before the diagnosis, and
although there was a mentalillness making a lot of that
much more challenging I justthink.
(21:58):
We all have something to learnfrom that type of experience,
whether it's friends or familymembers or a stranger on the
other side of a counter at theairport, you know just being
able to let go of and changeexpectations and appreciate,
admire, and at times even lovepeople for who they are and
where they are.
Just listening to your story,I'm learning a lot about you
(22:19):
know, grace seems to be kind ofthe key component here.
What can navigate the programitself teach us?
Well, I think first of all twothings on a social and personal
level, it can hopefully teach usthat there are a lot of people
dealing with severe mentalillness.
who have so much more to offerthemselves, the world, their
(22:40):
families and friends than youmight think.
And so give them a chance, helpthem find, the help and the
services they need.
But I think, you know, the otherpiece to me, even if you have no
empathy for people dealing withthis, There is a societal and
economic message and lesson tobe learned here where I just
wonder how many other peoplelike my son are out there who
(23:03):
are struggling, not working, abit of a strain on themselves,
their families.
And with the right help, theycan fill jobs, contribute to the
tax base, as I was saying.
And so, as great as this programis, and I don't have data on
what additional need for thingslike this are, but I would say
we need more of this.
We need more Navigate.
We need more wraparoundservices.
(23:24):
We see this in other areas likehomelessness and things where,
it's sort of a blend ofsolutions that help a person
move forward.
It's not just one thing likenavigate, it's therapy, it's
meds, it's vocation andeducational.
coaching.
So the more of that that we canbe open to the better.
If you're someone listening andyou're in the mental health
space, but you're not withfamily and children's services
(23:46):
and you've got psychiatry.
If you're a vocational coachingorganization, find a partner,
whether it's family andchildren's or someone else,
bring all these things together.
The other thing is that I wouldthink employers could Look at
this just the way we've lookedat members of the military as a
very employable source of peoplethat maybe they haven't filled
(24:08):
this particular job description,but they have lots of
transferable skills from servingthe military.
That's a topic I think we'remore accustomed to than hiring
people who are in treatment forsevere mental illness.
Sure, not everybody is going tostay in that job.
You know, people might last forthree, four, six months and not
be able to keep up with it.
But a certain portion of themwill.
(24:28):
And if you exclude themcompletely, you're missing out
on workers, so take a look.
And really good workers.
Absolutely.
And there are programs likeNavigate who can, I, think help.
as an employer with some minor,not significant, but some minor
accommodations that might bejust a little bit more than the
general employee population.
How to not just recruit, butkeep and train.
(24:52):
My son has been on severaldifferent occasions promoted and
learned new skills and movedfrom the floor to running
equipment.
he's wanting to get certified torun a forklift now, you know,
that's his own idea.
There's a self esteem piece too.
I know that with our women inrecovery program, for example,
the employers that hire thegraduates there.
Say that they are the bestemployees they've ever had When
(25:14):
you have somebody that reallywants to have that independent
lifestyle and it's become stableenough to be able to do that
There's a self esteem andthere's a pride in the work that
they're doing.
That's right.
Gives them a reason to out thedoor every day and enjoy what
they're doing.
You know, the flip side of thatis that I have no idea how many
employees on average with alarge employer might have some
(25:36):
mental illness or behavioralhealth condition that's not
being treated.
So, looking at a population ofpeople who are seeking and
receiving and benefiting fromthat support and improving from
it you've got workers there.
So take a look and consider it.
It's been great for my son andwill continue to be.
And I think there's anopportunity there for employers
who haven't considered it.
(25:56):
Great advice.
So this has been so enlighteningfor me.
Is there anything else you'dlike to add as a closer?
Well, as a closer, I want togive thanks to, navigate to
family and children's and evenoutside of this organization,
everyone in this space who is,either working you know, if
you're a case worker, clinicalworker, therapist, there is a
(26:16):
certain call that you have.
And.
Those people are so specialThere's also volunteers who just
do this out of the goodness oftheir heart and they're worth
their weight in gold.
And there's also those who fundthese programs and whether it's
a corporate or non profitfoundation that is giving
dollars to this.
It's not just making people'slives better.
It's making our communitieshealthier and stronger.
(26:38):
So, If you're listening andyou're part of this in any way,
I might not know you, but I'mtalking to you.
So thank you for what you'redoing.
Please keep it up.
And thank you for sharing yourstory with us today.
Thanks for having me.
Welcome to OK State of Mind apodcast by Family and Children's
Services based in Tulsa,Oklahoma.
This podcast seeks to satisfyinquisitive minds eager to delve
into the realm of mental healthand overall well being.
Join us on a journey to gaininsights into the intricacies of
the human psyche, drawinginspiration from stories of
resilience and hope.
(00:21):
Together, we'll unravel thefascinating science, the
invisibilia, that underpins ourbehaviors, Shedding light on the
whys behind our behavior and ouroverall mental health, our goal
is to empower, educate, andinspire you with actionable
insights that you canimmediately use in pursuing your
own mental well being.
(00:41):
In our last two episodes, wespoke to leaders from FCS's
supported employment programtailored for individuals
grappling with serious mentalillnesses such as schizophrenia.
And we also spoke with FCS'sNavigate program, which focuses
on early intervention forindividuals encountering first
episode psychosis.
Navigate aims to deliverpersonalized care that fosters
(01:02):
recovery and long term wellness.
These two episodes can provideour listeners with background
information about today'sconversation with a very special
guest, a father who has walked adifficult path of navigating his
son's journey withschizophrenia.
When his son was diagnosed atthe age of 19, this father
embarked on a relentless searchfor solutions, but the road
(01:24):
ahead was filled withuncertainty and challenges.
After many years without asolution, he found Family and
Children's Services Navigateprogram.
For this father, Navigate becamethe key that unlocked a brighter
future for his son.
And with a clear diagnosis andaccess to specialized support, a
transformation happened.
I'm your host, Dee Harris, andtoday we'll delve into his
(01:44):
journey exploring the highs andlows, and uncovering the power
of perseverance and theimportance of finding the right
support system.
So we've chosen to record thisepisode anonymously because we
want to create a safe space forsharing honest experiences.
Welcome to Okay State of Mind.
Thank you.
Glad to be here and talk withyou today.
Yeah, so great to have you.
So first of all, tell me just alittle bit about your journey
(02:08):
into this space of not reallyunderstanding what was happening
with your son?
You know when we got thediagnosis, my son was about 19
and a lot of lights turned onand dots connected for symptoms
that went back to reallyelementary school that presented
as maybe ADHD, Maybe just anangsty preteen who, you know,
(02:30):
didn't want to do what hisparents said, you know, a lot of
those things that just look likeother things, things that might
not be as severe or aschallenging.
And so, we began, I think asearly as maybe fourth grade.
talking with school counselorsand teachers, with talking with
therapeutic counselors, withtrying different types of
medicine.
(02:50):
I think ADHD was the firstcondition that we sought meds
for.
And went through a series ofdifferent therapists and a
series of differentpsychiatrists for medication.
And nothing really workedbecause we probably, well, we
were not treating the underlyingissue.
So although, schizophreniatypically sets in in the late
teens, early twenties I justwonder if some of those things
(03:13):
were earlier for him or if, it'sa spectrum, you know, it's never
just an on switch.
It's, when do things startpresenting?
And for him, it was very earlyon.
So.
We, at some point I think he hadfinished high school and it was
really starting to hit him, theillness.
And he just got to a point wherehe said, I'm, I'm tired of
feeling like this.
And, he sought help and he cameto his mom and I and said, you
(03:37):
know, I'm ready to do somethingdifferent.
And so we went and got anevaluation at a, local mental
health organization and foundout that it looked like it was
probably schizophrenia.
They initially had someone whoruled him out for that and we
sort of found out later that,maybe the symptoms weren't as
strong, whatever the case maybe.
(03:57):
And so another year or so wentby.
And I reached out to Family andChildren's Services and said I
don't know exactly what he'sgot.
He's, was considered forschizophrenia, considered for
bipolar, sort of a host ofdifferent things.
And found out that there is thiswonderful program here called
Navigate that's a, tremendouswraparound.
services program and for him, itwas the thing that made all the
(04:18):
difference.
It was the key.
Having, an actual diagnosis andthen having a program designed
for young people withschizophrenia just like him
started turning things around.
So that's sort of it in anutshell.
Navigate has been part of theFCS.
group of programs since 2016, itis a first episode psychosis
program.
So it's for like ages 16 to 30for individuals that experience
(04:41):
first episode because the way Iunderstand it, is that if you
can diagnose it early enough,you can Treat it to the degree
that you can live with thesymptoms or manage the symptoms.
Because there's a lot of mentalhealth disorders, that are
treatable and curable in a way,but schizophrenia is not one.
Right.
He'll have this forever.
(05:02):
And so his goal and our goal isto ask the question and then
move towards what does his bestlife look like for him.
And I'll tell you the shortanswer for those who are either
dealing with this or wonderingabout it or maybe know someone.
schizophrenia is not what younecessarily see in the movies.
If it's untreated it can be avery unpleasant experience for
that person and their lovedones.
(05:23):
My son today on medicationconsistently and in therapy.
If he didn't know he hadschizophrenia, I'm not sure that
you'd know.
Right.
So.
Well I'm a parent and I know howdifficult and emotional it is to
have a child that might be sickor feeling unwell or you don't
understand the symptoms or youget a misdiagnosis.
I know that must have been arollercoaster for you and your
(05:45):
family.
I'd like for you to talk alittle bit about that piece of
it, how you finally got therefrom fourth grade on and then
got help and what did that looklike for you personally?
Well, Thinking back if it wasaround fourth grade and then
diagnosed at age 19, you'relooking at roughly a 10 year
period or so and at some pointin probably middle school, it
(06:09):
was a level of frustration.
Particularly high school whereit was really starting to set in
a little bit more, probably.
Where you're just sort of atyour wits end as a parent, but
you don't know what it is.
And so a lot of whatschizophrenia, you know, one of
the symptoms or parts of it isthat people with this condition
have a hard time seeing the bigpicture.
So in other words, if I don't dothis, then here's the
(06:31):
consequences if I don't study orif I don't, you know, whatever
it is.
And so as an example, I thinkone of the coping mechanisms he
developed early on was just flatout lying about things because
he constantly had authorityfigures parents, teachers,
coaches, whatever it may be,saying you didn't do something
you were supposed to do.
And so, again, I said before alot of this presented as just an
(06:53):
angsty teen who had issues withauthority.
And for us, You could just pullyour hair out with frustration
dealing with some of this,dealing with emotional outbursts
and dealing with, a kid who wasin the gifted and talented
program, but then would have anF on an assignment where you're
just, you know, he'sintellectually capable of better
but for some reason didn't dowhat was needed to be done.
(07:15):
And so, it's hard to get to aplace where you just give up on
a child.
And we didn't get there, butthere were many times where we
felt close.
And I think, during thoseteenage years, a lot of what I
thought was he's going to growout of it.
He's going to grow out of it.
We're going to find, you know,just keep trying, keep trying
switch therapists, switch medsyou know, whatever it might be,
or he finishes a school year andbarely makes it out.
(07:37):
And we go, okay, we're going tohave some conversations this
summer and next year, nextyear's the year we're going to
pull it together and learn howto stay on top of things.
And just never really got thereconsistently because he wasn't
getting proper treatment.
Right.
Yeah.
So it was an epiphany.
A lot of people, when I shareopenly that my son was diagnosed
with schizophrenia a portion ofpeople give me condolences, I'm
(08:00):
so sorry to hear that.
Oh my goodness.
And what was that like?
Oddly for me, it was 95 percentrelief.
Sure.
Because now we've got a name forit.
Now we know what it is.
And we can start, working on thesolution.
Absolutely.
Navigate early episode psychosistreatment is really a game
changer for so many families inour community.
But, I know that you talk aboutwhen you say to somebody my son
(08:24):
has schizophrenia.
There's all kinds of perceptionsand judgments and stigmas.
From your perspective, what doyou think it is?
I think it, you know, my gutreaction, it's two things.
One, there's still a stigmaaround mental and behavioral
health where we're afraid totalk about it which is very
unfortunate.
We can come back to that in aminute.
I think the other thing for meis that I think pop culture from
(08:48):
Hollywood to books to whateverit might be.
tends to take a caricature of acertain condition.
We'll use schizophrenia as anexample or just mental illness.
And we can all probably thinkback in our minds to, you know,
scary movies, TV shows, books,whatever it might be where
someone with a mental illness isyou know, I'm, I don't want to
stigmatize people and use thesewords, but the characters they
(09:09):
create they might not becompletely fictional, but they
are the most extreme, worst casescenario of that condition.
And just the way we do withrace, gender, ethnicity, you
know, whatever it might bewe're, slowly, painfully
learning a lot about how we'vecharacterized people in groups
and cultures.
And so as I have shared thiswith people I just decided I was
(09:30):
going to be open about it so insocial circles and even in
business settings, when it'srelevant, I reference that my
son has schizophrenia and here'swhat we're doing and we've
learned a lot and with righttreatment, life can be great.
Not only has no one reactednegatively, I'm surprised how
many people are more than justempathetic, but share some
(09:50):
similar lived experience thatthey have with some kind of
mental illness with them or withtheir family.
So yeah, I think the more we cantalk about this and the more we
can all be open about it becauseeveryone's dealing with this,
either ourselves, I have ananxiety disorder and I take
medication for it.
And I've learned that I'mbetter.
You know, some people havedepression, some people have
bipolar or more significantthings like schizophrenia.
(10:11):
So I think the more we talkabout it and the more as we've
done with other social movementsand Hollywood and whatnot, the
more we can portray people andcultures accurately instead of
the worst case scenario of that,the better we'll be.
I'd love to hear more about yourexperience with the program
itself.
Yeah.
Well, it's eyeopening becausethe program has multiple
(10:31):
components for both the patientand their family.
So for the patient, there is atherapist.
There's a psychiatrist whoprovides meds.
Those two talk together asneeded to dial in either the
therapy sessions or medicationsso the right hand knows what the
left is doing, so to speak.
And there's also an educationaland vocational coach that can
help find ways when they'reready for the patients to
(10:54):
explore, you know, career andjob opportunities.
And all of those people talk.
The fourth component is atherapist who's available for
the family to talk with, becauseit's difficult for the family as
well just like any other, youknow behavioral or substance
abuse issue, whatever it mightbe, those of us living with and,
and loving these people have ourchallenges.
(11:14):
So, when you think about it, tome, the structure of Navigate is
so obviously beneficial that I'msurprised that it hasn't been
around even longer than 2016 or,or the year that you mentioned.
At least in Tulsa.
Yeah, in Tulsa, you know.
Yeah.
Again, I think I have toldpeople over the last few years
as we've dealt with this thatit's remarkable as a society, we
(11:36):
are so far behind with mentalHealth in our awareness of it,
our empathy towards it and eventhe services as great as
Navigate is.
You know, I always, jokingly saywe can land robots on Mars, but.
We drive by someone sleeping ona bench or under a bridge and
say, well, that guy just needsto get a job, you know, and stop
being lazy or a number of otherexamples.
(11:56):
The empathetic piece ofunderstanding where somebody
came from and what I love aboutthe name Navigate by the way is
it actually was named that toconvey the goal of helping
people or guiding people.
With first episode psychosistowards functional health and
providing them with services andall the things that they needed
so it was this Guidingprinciple, which I think is a
(12:18):
really lovely concept, too Yeah,and I think what I have seen is
if you can take someone dealingwith an SMI, Severe Mental
Illness and get them a littlebit stabilized, get them on
track for treatment, feeling alittle bit better, even when
they're medicated properly andhaving good therapy.
It's, still going to be a littlebit of a stretch for that person
(12:38):
to go find a job.
So for a program like Navigateto say, okay, you're ready.
You're doing well.
Therapy's going well.
Meds are going well.
Let's go to a job fair together,which is what happened with my
son, among other things.
But his job coach actually wentto a job fair with him, walked
around to the differentemployers, introduced him.
He at the time had been living abit like a hermit with mom and
(13:00):
dad kind of back and forthbetween our houses.
And you know, got into a spiralwhere he had some social anxiety
about even just getting outthere.
So even though he was on antipsychotic and going through
therapy and understandinghimself and others around him
much better, that next step of,okay, now you got to go apply
for a job.
That was a scary thing.
I think it's a scary thing forso many people, even not dealing
(13:23):
with an SMI.
It's like just another hill ormountain you have to climb over
and just being so brave in that.
Absolutely.
And when you have someone withnavigate saying, okay, I'm going
to go with you and I'll approachthese people first and then
introduce you to them.
When he told me that, he's like,dad, she's going to go there and
talk to them first and kind ofget things ready for me.
(13:45):
I mean, I could just see a worldof weight lifted off of his
shoulders.
Wow.
And following up on that notdoing.
Total applications andinterviews for him, but reaching
out to employers by telephoneand saying, Hey I've met with
this guy.
I think you can really like him,here's what some of his skills
and interests are What ended uphappening was he got a job.
Excellent.
And now he's filling a role witha local manufacturer who needs
(14:09):
workers.
So he's making money and he'spaying taxes and he's buying
probably more drive throughmeals than we think he should.
But you know, Hey, it goes tothe tax base.
He's buying gasoline.
And so, now he's being aproductive member of society and
without navigate, that wouldn'thave happened.
There's no question in my mind.
Wow.
So yeah, I'm sure that he wasfearful of judgment.
(14:30):
Do you talk about that with yourson or is that something that is
just part of it now at thisstage of the game?
You know, he was afraid ofmental health judgment as well
as just someone who hadn'tworked for a while.
Right.
And so at this point.
He's very self aware and thingsare what they are and so he
talks about his psychoses, talksabout his meds he's an open
(14:53):
book.
And an interesting thing for himthat has happened that I've
noticed has increased aftergetting involved in Navigate and
just being more well than he wasbefore.
He writes music and plays andrecords on guitar, ukulele,
piano.
And for him, you know, we allhave our different outlets.
For some people it's journaling,for some people it's talking
with a friend, whatever it mightbe.
(15:13):
For him, he's even more openabout his condition with his
music.
And he might be even with me whoI don't think he's uncomfortable
with.
something about putting music tolyrics that lets him get a
little bit more descriptive, alittle bit more detailed.
So that's great to see him doingthat.
No, it's really great.
I mean, art is such a wonderfuloutlet I think there's so much
science behind just how it helpsthe brain.
(15:34):
I just love that.
Yeah.
Okay.
As a parent, and you're seeingyour child not feeling well or
exhibiting certain behaviors,you don't know exactly what's
going on.
You get to the point that youdid, you get a diagnosis
finally.
And so what advice do you havefor other individuals who might
be dealing with something likethis One for myself personally,
(15:55):
I tried as long as I could toresist getting medication for my
anxiety and I wasn't fully awareat the forefront of my mind
about it, but it was my ownstigma.
about being quote unquotemedicated.
I didn't want to be that guy.
And so I tried therapy.
I tried reading books.
I tried to just be more selfaware.
And at some point, I don't knowwhat the tipping point was for
(16:18):
me.
I just decided I'm gonna go see,if medication might help.
I thought I had depression andit turns out it was anxiety.
I got on meds for a few years.
I decided to maybe to try nottaking meds and it wasn't good.
And so what I tell people,because I still hear a lot of,
Oh, well, if you're not on meds,that's a good thing.
Or, you know, there's this fearabout it.
(16:40):
And I'm all for trying somenaturopathic remedies, or
therapy, or other things andletting medications be last
resort.
But don't be afraid of it.
Try it.
I don't take the largest dose.
You might not need that either,if you're someone who could
benefit from medication.
For me, Nothing has helped theway meds have.
With my son taking anantipsychotic, nothing has
(17:02):
helped the way the meds have.
So the first thing is don't beafraid of that.
I can't change people's beliefsystem who are just anti
medication, but I would hopethat maybe people would open
their mind just a little bit.
The second thing would be, youknow, there's all these things
in life that you think, well,that'll never happen to me or
that's not me, right?
And I, again, because of popculture, because of people not
(17:24):
talking about it, I never in amillion years imagined that,
someone in my family much lessmy son would have schizophrenia.
And so it wasn't that I wasaware and resisted.
It was just so big and sodifferent and so scary of a
diagnosis that it'd be likeasking me if I think I could
ever go to the moon.
I just would have never imaginedit's not even on my radar.
(17:46):
So I think if you're dealingwith things and you're several
years into struggling and you'vetried different therapists and
different solutions, you mightjust open your mind that, Hey,
this might be bigger and moresevere than what we're thinking.
And.
That's not the end of the world.
Right, You know, if it's, youknow, we hear schizophrenia,
bipolar, some of these other,psychotic depression, some of
(18:08):
these other terms and theysound, I promise you, they sound
way scarier than they really areSo how has, how has life changed
now that your son has beendiagnosed, has a job.
I know you've touched a littlebit on it, but has your life
changed in how you approach lifeor how you approach the world or
(18:29):
other individuals?
Yeah, you know not only is itdifferent for him and how we
talk, I think one of the thingsthat's important with some of
these conditions for thefamilies and, and friends and
loved ones is changing yourexpectations, of how that person
views the world and the thingsthat matter to them.
And so because I think with myson, even on medications and
(18:49):
staying in therapy, every dayisa struggle for him And so I
find I'm far less, reactionaryto him as a father, as a
disciplinary So it's allowed meto kind of meet him where he is
and love him for who he is.
You know, he made cookies todayand they were delicious and, you
know, sprinkled confectioner'ssugar on them.
And I mean, a couple years agobefore Navigate, he had a hard
(19:10):
time leaving his bedroom.
He's, he's being productive andcreative with food as well.
But your other question, how ithas changed me separate from
him, I see society verydifferent and people very
different.
There are public things thathappen that are a result of, I'm
going to say, so you mentionedyou're not a scientist.
I'm not either.
I work in a totally differentcareer, so I'm not a therapist
(19:31):
and I only know what I know as afamily member and a patient
myself.
But, you know, a very extremeexample a year or two ago at the
Oscars, Will Smith famouslyslapped Chris Rock on stage.
And so I don't bring this up tokick a man while he's down, but,
prior to my son's experience andmy own experience with mental
health issues, I probably wouldhave thought, oh, what a bizarre
(19:52):
thing to do.
But in my journey, the moment Isaw that, I saw trauma.
I saw someone with probablywhether it was you know,
childhood or whatever it is,just, just issues, you know,
mental health is a combinationof nature and nurture, as they
say.
And for my son and it's probablyboth for everybody.
For my son, it's a lot morenature.
(20:12):
There's different chemicalsgoing on in his brain than for
the rest of us.
For what we saw at the Oscars.
That might have been some lifeexperiences.
You know, we all have workedwith maybe a coworker who people
just roll their eyes and thinkis kind of a toxic person or,
you know, whatever that is.
Maybe it's a family member orsomeone in a friend group that,
you know, people who aren'tclose enough for us to really
engage and go, what's going onwith you?
(20:34):
And it lets me see that behaviora little bit differently.
I don't excuse it.
You know, bad behavior doesn'twork.
There's a reason you can't justbreak the speed limit or
whatever it might be.
But I can see that now and holda little place in my mind and my
heart for grace for that personor those people.
And that feels really good.
Oh, I bet.
It's like stepping into somebodyelse's shoes.
(20:56):
It's knowing that you don't knowwhat somebody else has
experienced in their life andwhy they are where they are.
What you're saying is what'sreally important here.
And the only thing that's reallyimportant is that you love your
child unconditionally and thatmeans allowing them to be who
they are, whoever that personis.
That's right.
I've always loved my son, bothof my children.
(21:16):
But for a lot of years before wewere on a path to wellness for
him, I wanted him to fit in themold of, The things you
typically think of for a son,you know, pick up after
yourself, help with chores, dowell in school be polite when we
go out to dinner, you know,whatever those things are as we
raise our kids.
And a lot of those things werereally difficult and it was
frustrating for me to not beable to get him in that mold
(21:37):
that I wanted him to be.
And I think it took somethingthat's extreme for me to just
go, okay, I can now sit on thecouch with my son and just talk
with him about what's on hismind or whether it's, you know,
watching a football game or thenews of the day and just talk.
And it's great.
Although I couldn't have beenthere before the diagnosis, and
although there was a mentalillness making a lot of that
much more challenging I justthink.
(21:58):
We all have something to learnfrom that type of experience,
whether it's friends or familymembers or a stranger on the
other side of a counter at theairport, you know just being
able to let go of and changeexpectations and appreciate,
admire, and at times even lovepeople for who they are and
where they are.
Just listening to your story,I'm learning a lot about you
(22:19):
know, grace seems to be kind ofthe key component here.
What can navigate the programitself teach us?
Well, I think first of all twothings on a social and personal
level, it can hopefully teach usthat there are a lot of people
dealing with severe mentalillness.
who have so much more to offerthemselves, the world, their
(22:40):
families and friends than youmight think.
And so give them a chance, helpthem find, the help and the
services they need.
But I think, you know, the otherpiece to me, even if you have no
empathy for people dealing withthis, There is a societal and
economic message and lesson tobe learned here where I just
wonder how many other peoplelike my son are out there who
(23:03):
are struggling, not working, abit of a strain on themselves,
their families.
And with the right help, theycan fill jobs, contribute to the
tax base, as I was saying.
And so, as great as this programis, and I don't have data on
what additional need for thingslike this are, but I would say
we need more of this.
We need more Navigate.
We need more wraparoundservices.
(23:24):
We see this in other areas likehomelessness and things where,
it's sort of a blend ofsolutions that help a person
move forward.
It's not just one thing likenavigate, it's therapy, it's
meds, it's vocation andeducational.
coaching.
So the more of that that we canbe open to the better.
If you're someone listening andyou're in the mental health
space, but you're not withfamily and children's services
(23:46):
and you've got psychiatry.
If you're a vocational coachingorganization, find a partner,
whether it's family andchildren's or someone else,
bring all these things together.
The other thing is that I wouldthink employers could Look at
this just the way we've lookedat members of the military as a
very employable source of peoplethat maybe they haven't filled
(24:08):
this particular job description,but they have lots of
transferable skills from servingthe military.
That's a topic I think we'remore accustomed to than hiring
people who are in treatment forsevere mental illness.
Sure, not everybody is going tostay in that job.
You know, people might last forthree, four, six months and not
be able to keep up with it.
But a certain portion of themwill.
(24:28):
And if you exclude themcompletely, you're missing out
on workers, so take a look.
And really good workers.
Absolutely.
And there are programs likeNavigate who can, I, think help.
as an employer with some minor,not significant, but some minor
accommodations that might bejust a little bit more than the
general employee population.
How to not just recruit, butkeep and train.
(24:52):
My son has been on severaldifferent occasions promoted and
learned new skills and movedfrom the floor to running
equipment.
he's wanting to get certified torun a forklift now, you know,
that's his own idea.
There's a self esteem piece too.
I know that with our women inrecovery program, for example,
the employers that hire thegraduates there.
Say that they are the bestemployees they've ever had When
(25:14):
you have somebody that reallywants to have that independent
lifestyle and it's become stableenough to be able to do that
There's a self esteem andthere's a pride in the work that
they're doing.
That's right.
Gives them a reason to out thedoor every day and enjoy what
they're doing.
You know, the flip side of thatis that I have no idea how many
employees on average with alarge employer might have some
(25:36):
mental illness or behavioralhealth condition that's not
being treated.
So, looking at a population ofpeople who are seeking and
receiving and benefiting fromthat support and improving from
it you've got workers there.
So take a look and consider it.
It's been great for my son andwill continue to be.
And I think there's anopportunity there for employers
who haven't considered it.
(25:56):
Great advice.
So this has been so enlighteningfor me.
Is there anything else you'dlike to add as a closer?
Well, as a closer, I want togive thanks to, navigate to
family and children's and evenoutside of this organization,
everyone in this space who is,either working you know, if
you're a case worker, clinicalworker, therapist, there is a
(26:16):
certain call that you have.
And.
Those people are so specialThere's also volunteers who just
do this out of the goodness oftheir heart and they're worth
their weight in gold.
And there's also those who fundthese programs and whether it's
a corporate or non profitfoundation that is giving
dollars to this.
It's not just making people'slives better.
It's making our communitieshealthier and stronger.
(26:38):
So, If you're listening andyou're part of this in any way,
I might not know you, but I'mtalking to you.
So thank you for what you'redoing.
Please keep it up.
And thank you for sharing yourstory with us today.
Thanks for having me.
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