Leanna May Franklin: Love Without Structure:Navigating Serious Mental Illness as a Family

Welcome to Why Not Me Embracing Autism and Mental Health Worldwide?
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world one story at a time. Hi, I'm Tony Mantour.
Welcome to Why Not May Embracing Autism and Mental Health Worldwide.
Joining us today is Leona May Franklin. She is a
co founder and operations manager of Seattle NAD in Bellevue, Washington,
where she leaves efforts to develop a holistic approach to
treatment addressing the root causes of complex conditions. Additionally, as
a Washington State policy director for the National Shattering Silence
Coalition and SSC, she works with influence and improve mental
health policies focusing on systemic reform and advocating for individuals
and families affected by serious mental illness. We are thrilled
to have her wealth of expertise with us today. Thanks
for coming on, and can you give us a little
information about yourself.
I am a licensed mental health clinician living in the
state of Washington. I also serve as the policy director
for Washington in state for the National Shattering Silence Coalition.
So if you would tell us what led you to
become an advocate.
So I've always been in the health field. I've been
practicing in medicine for almost twenty years, and in twenty
twenty one, my adult son suffered a psychotic break and
that's when I got deep into mental health.
Okay, what age was he at the time that this happened.
He was nineteen years old.
Nineteen okay, So I hear many times that a lot
of younger people show signs of psychosis, but it goes unnoticed.
Were there any behaviors or indicators that preceded his psychotic episodes?
What was happening beforehand was what I thought to be
typical teenage behavior, so you know, isolation, mood changes, slight
behavior changes. But he was still functioning and you know,
showing up for school every day. He was the best
driver in our family. You know, he had a lot
of strength and qualities that caused us to maybe not
look at those challenges so closely.
Okay, that makes perfect sense. So what happened that made
you realize that you had to look at this more seriously?
So my son had been hanging out a lot with
his friends and we hadn't seen him for a couple
of weeks, and he came home on fourth of July
weekend to celebrate with the family. We're all having a barbecue,
and he wasn't himself. Halfway through our celebration, he had
a meltdown, which I've never seen him really have such
a meltdown before. And as the weekend progressed, we had
to really examine what was going on, and he had
a complete executive functioning meltdown, which I've never even witnessed
in a person before. And so from that point on,
I mean, he went into an inpatient facility. And from
that point on, we've been looking at every intervention that
is out there, holistic, conventional, working with the best professionals,
the best programs, and even with the means and the
support we have had very similar stories as someone who
doesn't have access to these programs.
Yeah, so, can you describe what the executive meltdown looked like?
Because if you've never seen one, then I'm sure a
lot of our listeners haven't either. It just might help
them as well.
Yeah. So, disorganized speech, responding to internal stimuli, audio and
visual hallucinations, very aggravated and agitated, you know, unable to
sit still. He just wasn't feeling well. He just did
not feel well. He needed our help. He knew something
was wrong and he really needed our help.
So was he in a capacity where he knew something
was wrong or was he one that thought everything was
just okay.
In my son's case, he knew. He knew before any
of us knew, when he was aged fifteen that something
wasn't right, and he actually advocated for his own treatment
early on. Again, at the time, we all thought it
was typical hormonal stuff, depression, anxiety, social challenges, academic challenges,
just the stress of life. But he knew something was
wrong and he actually did a lot of his own
research online. At one point he did say to us
at age sixteen, I think I might have schizophrenia.
Really Wow.
At the time, I was very dismissive, understandable, even though
you know, I'm getting him the help he needs. We
had one of the best psychologists in the United States,
et cetera. I at the time was in complete denial
as a mother and thought, well, this is just the phase, sure,
because it doesn't run in our family. And I had
always thought that schizophrenia bipolar was genetic, okay, and it's
a long term diagnosis. You don't just diagnose somebody, right, right,
So I thought, my child's reading stuff online and he's getting,
you know, ideas of what an extreme scenario would be.
And you know, you don't diagnosis of schizophrenic It usually
takes up to ten years because it has to be
consistent symptomology. Right. So here we are, twenty twenty five,
you know, almost five years after his meltdown, and we've
learned a lot.
What did you learn out of this?
We've learned that he absolutely has gets the effective disorder
depressive type and struggles with poly substance use. And it's
been a real challenge getting now that he's an adult,
getting the treatment that he needs. So we're at the point,
you know, We've worked with coaches and mentors and caregivers
and friends of families and professionals and people that I've
hired as peer support, and we're at the point now
where we're hiring an attorney to petition for long term
court ordered long term treatment.
Okay, so in your state, do you have any form
of AOT or is that pretty much nonexistent?
We do, So they passed the law in Washington State
in twenty twenty three, and they're just now getting momentum.
There's two people in the AOT office in Washington State
and I have been blowing them up for months through email,
you know, in a very professional way. And I was
very fortunate. My son has never had a history of
criminal involvement. He's never been in the criminal justice system. Fortunately,
after twelve hours of an escalated incident, twelve hours of
me calling every single mental health crisis number that we
have available here in King County and getting no help,
he was arrested for his behavior and at that time
AOT finally got involved and took his case. So had
I not been advocating for months up until that point,
working with the local case management team, etc. He would
have not had the care that he received while in
custody at King County. So fortunately AOT was able to
at least I supervised his experience there. He did not
get charged with any crime. He was on a mental
health hoold for two weeks and then he was released
without a treatment plan. It wasn't just a gap in treatment.
It was more of a cliff where they're not giving
me any visibility because he's an adult.
Yes, very common, you know how it goes.
And so now the AOT team is saying they're going
to provide wrap around services. So I'm hopeful that the
AOT program will develop and I'm aiding in that process. Right,
I'm getting as many people involved as possible.
So that sounds like things are starting to work out
now since he's been released. How has that gone. Has
it been a bumpy road or have things smoothed out?
And all the other things you're putting in place are
starting to work the way they should.
So we're in the process of building a wrap around team.
I am bringing together social workers, public defenders ADS, we're
petitioning for court ordered treatment. I'm setting boundaries, right, I
love my son with every fiber of my being. That
love without structure can become enabling, and so boundaries are
an act of protection for both of us. Absolutely, I'm
chrishing for policy change. So every day I'm talking to
the people in the community about what we can do next.
He does call, so he's currently homeless. He does call
about once a week. He'll call either myself or his father.
We're encouraging him to seek treatment. I don't believe that
he has the self awareness to really climb out of
the hole that he's in, so he needs wrap around support.
And that's where we're at today.
You say he's homeless, Is he living on the street
or is he living in a shelter or a combination
of both.
He's in and out of the local shelter and that
is very very very hard for me.
I'm sure it is.
To say that out loud to a public audience is
very very hard, because we moved mountains to make sure
that he wouldn't fall through the cracks. And so that's
why I bring this back to this isn't a matter
of economic status, right, This isn't a matter of education
or funding. It's a matter of there is no model
to address the challenges that we have, especially when you're
dealing with an adult family member who is by law
and able to make their own decisions, with very little
room to intervene.
So what's your next step. He's living where he's living,
he understands there's a problem. Unfortunately, he's not getting the
medication or the treatment that he needs to turn that
around so he can get past it. So what's your
next steps to make this better?
So we're working closely with the Assisted out Patient Treatment Team.
We're putting together an ACT team, which is the sort
of community treatment. They will go to him wherever he is,
they will visit him. We're bringing together peer support, surrounding
him with people that are his age, that have looked sperians,
that have grown out of these challenges and have brought
their lives together. We have other interventions available when he's ready,
such as metabolic psychiatry support, functional medicine providers. We've put
together a caregiving training program at the local care agency.
When he's ready to live on his own again and
live independently, we can provide that caregiver support in actual
caregivers to come into home and help him maintain his
autonomy as much as possible. So these are the things
we're working on. I'm the type of person to take
action when I'm being challenged or when I'm trying to cope.
So if I don't have something i'm working on, I
will also go into a helpdown, you know what I mean.
I have to be constantly taking action, So I do
have my checklists. I think the thing we're focusing on
the most and what's most urgent is petitioning for core
ordered treatment.
At this point, Okay, that's great. So what happened to
your son? Did that lead you to starting your own charity?
So I don't run a charity. What I have is
a ballistic mental health clinic here in Bellvue, Washington. I've
partnered with a psychiatrist, an addiction specialist who has integrated
in his practice. He's also the chief medical officer at
the largest behavioral health agency in the state of Washington,
and so at our clinic, we offer holistic interventions such
as blood testing, which I believe should be the very
first step in any urgent mental health crisis. We need
to test their blood and see what biological factors may
be occurring. We offer IV therapy, and I could go
on and on and on about the services there, and
then at the Behavioral Health Agency, we're trying to make changes,
such as the new nonprofit called Camp Hope. So our CEO,
Jody Daily, I just attended this Saturday night. She is
the CEO of Comprehensive health Care, the Behavioral Health Agency,
and she has personally herself been driving forward this new model,
a shelter that has a behavioral health clinic at the
center of it, so anyone living at the shelter can
walk outside of their independent living apartment and walk directly
into a clinic where they have clinicians and physicians available
all day, every day. And that has been a miracle.
So is that happening all across the state or just
in your area.
That is happening in Yakima, Washington, which is there about
two hours drive from the greater Seattle area, And in
my personal opinion, from what I've seen from Washington State,
it is by far the best model. They've been able
to provide more behavioral health services and more housing solutions
than any other organization in Washington State in only six months.
Wow, that's great.
So they're making big, big change over there, huge change,
and they're doing it with virtually no money. So it's
not hundreds of millions of dollars into these kinds of projects.
They've been able to successfully launch and maintain their programs
with virtually no budget. So this is what we're advocating for.
How do they do it when you've got all these
companies across the US that are all about the money.
The more money they get, the more things they can do,
and then you have a clinic like this that is
operating on little or no money and succeeding.
So tell me what's the difference.
That's a loaded question. So you know, it's about bringing
humanitarians together. I think that it speaks volumes when we're
having a celebratory fundraiser, and there was no cost to
putting on the events. So these are the things you
want to look for if you're looking to support an organization.
It was hosted at a church. The entertainment volunteered their time,
the culinary catering volunteered their time. We had people from
the shelter helping to serve the dinner. The CEO, his
name Michael Kay, was offered a raise from the board
of directors at Comprehensive and he turned it down saying
that we can't afford to give me a raise right now.
Wow, very impressive.
It's really about finding the right people who care, and
you'll know if they're that type of person or not
when you see this kind of evidence, right.
Right, So is this all across the state or is
it just in their area?
That specific model is in Yakima, Washington. I know that
a bunch of leadership members went to Philadelphia last week
and they're also finding other models that are working there
and trying to bring those here as well. So there's
certainly people all over the US doing really great things.
This is just what's happening in my own vicinity.
Yes, So it.
Seems like that model needs to be spread out at
least through your state to make it better for everyone.
Absolutely, absolutely, And we're happy to share this model with
anyone who wants to take a look at the blueprints
and how they put it together. They actually assembling shipping containers.
We've had amazing testimonies. We've had homeless members of our
community that have been one hundred percent rehabilitated after years
and years and years of homelessness and police substance use
and society have given up on them and they're fully
rehabilitated and back in society. So I'm optimistic that this
is a great model.
Yeah, it definitely sounds awesome. So what's the next step.
You've done all this so far, what are the next
plans to possibly take this to a greater level.
So if my son were here with us today, he'd
be sharing the songs that he writes. He'd be making
you laugh. He's a big dreamer and he deserves to
do just that every day. Every person with serious mental
illness deserves the right to thrive and not just survive.
So if you're listening and want you to ask yourself,
what can I do to make a difference? Okay, maybe
it's writing a ledge just later in your area. Maybe
it's showing up at a local mental health board meeting.
Maybe it's checking in on a friend who's caring for
com in crisis. You can reach out to us at
Shattering Silence or visit our website for toolkits, letters and
advocacy templates. You can reach out to me personally if
you'd like to learn more about any of the interventions
I mentioned or need advocacy. I will attend to any
meeting anywhere in the US, provided I have the availability
on my schedule. You can reach me at Leanna at
Seattle nad dot com. That's l EA n NA at
Seattle like the City, nancyappledog dot com my phone number.
You're welcome to caller text four two, five, three, nine
three or seven sixty two. This is what it is.
These are the next steps. It's staying engaged, it's staying connected,
it's communicating new ideas, communicating what's working, what's not. And
it's not giving up.
Yeah.
I think the most important word that you just said
is not giving up. You just got to keep plugging away.
So what do you tell people? Schizophrenia can feel like
an overwhelming and isolating experience, not only for those diagnosed,
but also for their loved ones, who often feel lost
and afraid when faced with this complex situation. What, in
your opinion, are the most effective ways to support and
empower individuals with schizophrenia. How do we educate and reassure
families and communities to reduce the fear, the stigma, and
uncertainty surrounding this mental health challenge.
Yeah? Well, and you're doing a great job with that, Tony.
Every single day you're helping people to tell their stories.
So the more we can educate the public raise awareness,
the better. And I think, you know, I'd like to
speak to that place that's kind of quiet, that's underlying
from what you're saying, and that is kind of the
place that isn't polished or solved or wrapped in a
bout right. We don't have all the answers. It is
the scariest, most challenging experience that I've ever witnessed or
have experienced in my life. I recently read the first
three chapters of the book Difficult Mothering a Child with
Mental Illness by Judas Smith, and I was flooded with
overwhelming grief and sadness, not just because the stories were powerful,
but because they feel like my own. So these mothers, parents, families,
their children, their family members, your heartbreaks day. They live
inside all of our lives. I don't think anyone's really
immune to this. And that's really the understanding that we
have to reach, is that this affects everyone. We no
longer have the luxury of turning in blind diets everywhere,
and there's a particular kind of grief that mothers carry
when their child struggles with severe mental illness. It's not
the kind you recover from. It's the kind that stays.
When you put it just the way that you did.
That's a very powerful statement. So how do you convey
a pain that's so profound, it's unlike anything they've ever known,
a silent, unshakeable weight that lingers in every moment. To
someone who's never felt it or struggles to understand it, I.
Would say, look up and read about ambiguous grief. Ambiguous
grief is what we're experiencing when we're losing someone who's
still with us, Like they may be physically present but
their mind is gone or opposite right, they might be
gone physically, but they're calling week to week. We don't
know where they are. Ambiguous grief is so painful because,
like you said, we don't have the answers. We don't
know how this is going to play out. We're completely
powerless and no one is coming through with a plan.
And it is the scariest, darkest place. And I say,
we're in the dark ages. You know, Washington State has
the most money than any other state in the US
per capita, and we're in the dark ages when it
comes to mental health care. So it's about understanding that
emotional experience and not allowing it to consume you. And
you've got to move the emotion. You have to move
the emotion or you will become paralyzed. Have to move
through it, and you have to talk about.
So how do you get through it? What is your secret?
I talk about it? Yeah, I cry, I cry, I exercise,
I call out for help. And there's some days Tony said,
I just don't move at all. We're tired. We are
so tired. Sure, I want you to know, if you're
listening and you're tired, it's okay, it's okay. It doesn't
mean that you're weak. It doesn't mean that you're failing.
It's okay to be tired, and it's okay to rest.
And some days that's what we do.
Okay.
So I think you hit a very good thing. On
the parent side. When you go through something like you're
going through with your son, you're consistently thinking about it.
You don't have the power to change it. It can
get depressing. Depression can lead to a lot of things.
It can make people tired, no energy, lethargic. How do
you get past that so you don't fall into that trap?
How do you keep yourself motivated so that you can
get out there and beat that drone hopefully make things better.
Well, here's the thing is know your limits, so you know,
not every single person going through this has to go
out and become a policy maker. Right, Like that was
what was working for me, But maybe what's working for
the next person is accountability in a different form. I
think accountability is a very general answer that works for
most people. The moment we start to isolate and we
stop taking an action or start freacketing about self care
and routine, that's a dangerous place to be. We certainly
don't want to be coping with harmful substances or anything
like that either, Right, So it's really about accountability. If
you have a loved one or a partner, or friends
or family or anybody to check in with, you, to
communicate with, to really be transparent about how you're really
doing today, I think that's really a good starting point.
So what would you tell people that are just getting
the understanding of what their son or doing will be
going through. They are still figuring it out but still
trying to cope with it. What advice would you give them?
Because it's not just them now that have to deal
with it. They've got an entire circle of people within
their community, their friends, their family, people, they work with,
so many people that might not understand or support it.
Some people that I've spoken with they don't want to
talk about it because unfortunately, for lack of a better word,
they're a little ashamed of it, even though they don't.
Need to be. So what advice would you give them?
Yeah, so there's an overwhelming level of shame. And yeah,
you're correct. If you suspect that your circle, your community,
your friends and family won't understand, chances are they probably
won't because, like you said, Tony, unless they've been through
it themselves, they just don't get it. Even the people
that do stand by you and that do you try
to understand, they just won't at the end of the day.
And that's okay, and we can accept that. And if
you're not comfortable talking about it, don't talk to the
people that you're comfortable opening up to. Your personal life
and certainly someone else's protected health information. You know, this
is your family member's personal life as well. We don't
broadcast that. So this is a very different situation in
my case. But you know, in the beginning, it was
between me and my two family members. It was the
three of us dealing with this sort of The long
answer is, look into what the five stages of grief are.
Expect that you're probably in denial right now. Expect that
you're probably going to be trying to solve this, and
just prepare yourself for each phase and prepare yourself for
the reality of what might occur. But stay optimistic as well,
and just don't give up. The only thing that got
me through with all the ups and downs and all
the confusion and what works and doesn't work, is the
message to never give up. Just don't give up, don't
give up on yourself, don't give up on your family member,
and whatever that means. Right, I had to set boundaries.
I cannot be in the same room with my loved
one today, as much as i'd like to be. For
his safety and my safety, We've had to put some
barriers between us. And that's okay. So you don't give
up and you do what's necessary to keep going.
Okay.
I don't want to downplay what you just said. They
are great words, but great words, even though they're well meaning,
sometimes can fall short when they're feeling that pain. Even
though it's not physical, it's emotional and that can be
as crippling as physical pain. So how do you help
someone push through when don't give up just isn't enough.
How do you inspire them to truly believe they can
overcome this.
Sometimes it's okay to lose that belief. Sometimes it's okay
to say I can't anymore, I don't know what to
do anymore, I've done everything I know how to I'm
giving up today. It's over. I can't do this, And
sometimes the situation wins. That's okay too. Whatever the emotion is,
you have to be accepting and move through it and
just know that you're going to wake up again tomorrow.
Sometimes miracles happen. You know. I've had times where I
just couldn't find the answers and I did everything I
knew how to do, and this would completely consume me,
and then you get a phone call, you get an email,
you get good news. So recognize that it's not just
you carrying this, and please don't ever carry this alone.
Okay, Well, you know you kind of said what I
was going to ask you next, but that's okay. It
was going to be in clothing. What would you like
to tell people that they need to hear so, I'm
sure that you have more information that you can add
to this.
So there's the emotional side of this, and then there's
also the logistics. So if you have it in you
to so advocate for your family member, here's what you
need to know. You need to document everything dates, hospital visits, behaviors, medications,
refusals of services. Keep a record. It matters when you're advocating,
especially in legal or policy settings. Learn the language of
the system. Understand terms like gravely disabled leads to restrictive,
alternative and assisted outpatient treatment. Knowing how these systems work
empowers you to challenge them effectively. Build a wrap around team.
Do not do this alone. Involve care coordinators, social workers,
public defenders, psychiatrists, and yes, as many advocates that are
willing to listen and show up on days that it matters.
Your voice matters. A team amplifies your voice. Find an
attorney who specializes in petitioning for court ordered treatment, and
two more things. Don't give up on love, but set boundaries.
Set boundaries because love without structure can become enabling. Boundaries
are an active protection for both of you. Feish for
policy change. Our systems won't change until people like us
demand it. That's why I work with National Shattering Silence
Coalition to in the criminalization, neglect, and abandonment of our
loved ones and then find the solutions that work. We're
talking about them every single day.
Yeah, that's great information. Well, this has been good, great information,
great conversation. I really appreciate you taking the time to
come on.
Thank you, Tony. I'm so grateful you had me here today,
and thank you for all the work that you're doing.
Oh it's my pleasure. Thanks again. Thanks for taking time
out of your busy schedule to listen to our show today.
We hope you enjoyed it as much as we enjoyed
bringing it to you.
If you know someone who.
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