November 19, 2025 • 57 mins
We dig into life with FASD beyond labels: how shame warps identity, how routines protect mornings, and why late-blooming brains change everything. RJ shares the red shoes origin, practical language for kids, and a hopeful path from rage to self‑acceptance.
• removing shame and naming “it’s not your fault”
• morning reboot, windows, slow processing
• routines for sensory load and homeschooling
• caretaking as kids and delayed meltdowns
• diagnosis as a doorway to forgiveness
• age‑appropriate truth telling without trauma dumping
• dismaturity and brain domains explained
• comorbidities and “it’s complicated” framing
• experiential learning and practical supports
• neuroplasticity, myelination, and late blooming
• authentic voice: writing like you talk
• mentoring over short‑term coaching
• starting advocacy locally and year‑round
• debunking cultural myths and stigma
• community, hope, and the power of red shoes
You know, hit the like button, subscribe, go to the website, and on our website, you know, you will find a lot of really amazing things because we believe that our differences aren’t deficits. They are the wings that help us fly
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_00 (00:08):
Welcome to Real Talk with Tina and Anne.
I am Anne, and today you aregoing to listen to part two of
the conversation that I havewith RJ Format because he helped
us understand FASD through realstories, lived truth, and that
rare mix of honesty and heartthat only he and I both can
(00:29):
bring to the table because we'veknown each other for over 15
years.
In this next part, we get intothe things people really talk
about, the shame that shadows somany, the relief that comes from
hearing this is not your fault,and the lifelong learning curve
of living in a world that isn'tbuilt with neurodivergent minds
(00:51):
in mind.
RJ opens up about identity,relationships, support systems,
and the daily work of showing upfor yourself even when the world
misunderstands you.
And let me tell you, some ofwhat he shares here is the kind
of insight that stays with youlong after the episode ends.
And it's good advice even if youdon't know somebody with FASD.
(01:14):
This is some powerful stuff.
So take a breath, settle in, andlet's pick up right where we
left off, because this nextpiece of the conversation really
matters.
Thank you, RJ Formanac fromFlying with Broken Wings and Red
Shoes Rock.
Look it up.
They are both great spaces foranybody with FASD or anybody who
knows somebody with FASD.
(01:35):
We really learn a lot about RJand me in this episode, and it
is really, really fun and greatand inviting and all the things.
So listen to the whole thing.
It's really worth it.
This is part two.
I think that you touched onsomething too.
And I don't know if everybodywith FASD has this because I'm
sure that a lot of us are verydown and out and go through the
(02:00):
seasons of pain and shame andall of those things.
And I'm not saying that thosearen't a part of it.
What I'm saying is theresilience factor is so strong.
And I the the I always have theglasses half full take on
things.
And I don't know where thatcomes from.
(02:22):
People have often said to me, Idon't know how in the world
you're able to do all thatyou're doing and have such a
positive outlook all the time.
And it's not something I'm evenforcing myself to do.
It's just there.
And I just wake up the next dayand I've got this really like
let's go.
(02:43):
And I don't know.
SPEAKER_04 (02:45):
No, you do know.
Every day is a new day.
Is that why?
Yes.
For for us, when we wake up,it's a brand new day.
SPEAKER_00 (02:56):
Is it like short-term memory person on
Saturday Night Live?
SPEAKER_04 (03:01):
Kind of, kind of like, yeah, it's kind of like
Groundhog Day.
It's like, yeah, however I feltyesterday, I'm probably going to
feel the same way tomorrow whenI wake up.
I'm happy, I'm ready to go.
Like when I was a kid, thatmoment is still there.
Um when I sleep and I'm we'restill trying to figure out if
this is a trauma thing or abrain thing.
(03:22):
I don't dream.
I do not dream.
Occasionally I have littleglimpses of what I think might
have been a dream, but thatthat's sort of in that period of
halfway between awake and thesleep.
SPEAKER_00 (03:34):
Like you've been tested, you've been tested, and
you don't go into REM.
SPEAKER_04 (03:40):
Um I do, but when I go to sleep, my brain seems to
shut off.
It's black, it's like I don't,I'm not conscious of the length
of time that I'm sleeping.
It's like turning out a light, Iturn it on, and it's a brand new
day.
It's a really weird, it'sdefinitely strange.
(04:01):
So if I was super stressed outwhen I went to sleep, I wake up
at at least at first, it's stilla brand new day.
Then the memory starts to come.
SPEAKER_00 (04:13):
Okay, that's really interesting because that 100%
happens to me.
I wake up and it takes a whilefor me to realize what my day is
going to be, what happenedyesterday, those thoughts and
memories and everything startcoming back, but it does take a
while.
(04:33):
It doesn't come right when Iwake up.
And I never put that togetherbefore.
SPEAKER_04 (04:38):
I I give myself, and I'm able to do this because I'm
not raising kids, the grace oftwo hours automatically.
And that's because my brain islike uh an old, you know, um an
old Windows computer from like1990.
It takes all the differentprocesses starting up take time.
SPEAKER_03 (05:00):
Yeah.
SPEAKER_04 (05:01):
And I I call it it's giving myself grace,
understanding that don't make memake decisions in that first two
hours.
Don't make me converse in thosefirst two hours because I'm just
trying to get everything online.
And if I do, you know, I couldbe angry, I could be curt, I
could make a decision that I'mreally gonna regret in in an
(05:24):
hour and a half when I thinkabout it.
So yeah, I try um if I have likea 7 a.m.
uh start for an event, I'm wayup four or five.
And that's just to get my braingoing.
SPEAKER_00 (05:41):
Yeah, I mean it I need that time too.
I absolutely need that time.
I'm homeschooling one of my kidswho also has um quite a few
differences, and he has, I'msure he's gonna end up with the
diagnosis as well.
He's next to go to the clinic,um, but he can't handle all the
(06:02):
noises and the social stuff andeverything.
It's just a lot, and he is done,he's spent within an hour of
being anywhere, so we um keephim pretty close.
And he's nine, but yeah, I mean,it's it's really difficult for
him as well to um to do life,and so uh we have quite the
(06:27):
routine.
We have a routine, and routineis very important to us.
But like you were saying, youneed that morning time.
I know when I need to get up toget my other son off to school
to be able to work with my oneson that I'm homeschooling, and
I need that time.
I know what I need in order tostart a productive day, to be
(06:51):
productive with him.
SPEAKER_04 (06:52):
It works for the kids too.
I had a parent that I suggestedthat to.
Her kids were um just fightingand melting down two boys around
the same age going to school andgetting them up early and just
allowing them some quiet timeeach by themselves, it improved
things immensely.
And it also helped them inschool because they weren't
(07:13):
coming to school fighting withtheir brother.
SPEAKER_00 (07:15):
Did you have meltdowns?
SPEAKER_04 (07:18):
I wasn't allowed.
Okay, if that makes any sense.
Um yeah, and also because of thelife with my mother, I had I had
to take on a caretaker role manytimes for my two younger
sisters.
So I didn't have the luxury if Imelted down, we didn't have
(07:44):
breakfast or nobody made lunch.
So um, in those moments, I justhad to learn to buckle down and
uh yeah, I'd have my meltdownlater.
I'd go jump on trains to go toschool.
I used to run across the top ofthe boxcars back when they had
the the running boards on theroofs.
It's a long time ago.
First time I got arrested, I wasseven years old.
(08:07):
I was running on a train and thecops caught me.
SPEAKER_00 (08:10):
You know what though?
You you just proved somethingabout who we are.
What comes along a lot of timeswith FASD is also what we talked
about very early, the traumapart of it.
But I also had to take care ofmy mom.
My dad had passed away, and shewas my adopted mom, and I had to
(08:32):
take care of her.
I felt that I had to take careof her and my sister, who ended
up giving, you know, being putback into the system.
There is so much that comesalong with just the fact that we
were either adopted or put inother homes or that we have to
(08:53):
take care of the people whoshould be taking care of us.
There's so many layers that arethere that are at and that we
can do it.
I mean, we're placed insituations that really are above
us.
It's hard for our brains to evendo those things, but yet we're
(09:14):
figuring it out.
We had to figure it out really,really young, because the people
who were supposed to be thestability in the home, they
weren't the stability in thehome.
So you take our FASD brain, andwe're the ones having to step up
to be the caretakers, to be thestrong ones, to be the resilient
(09:36):
ones.
And I think that that does carryon into who we become as adults.
SPEAKER_04 (09:43):
Oh, however, when I was in a safer environment, I
would rage.
I wouldn't just melt down, Iwould have rage.
See, and you know, I think back,that was more than just what was
going on in the moment.
That was everything coming out,just this toxic slut and uh that
(10:07):
busted doors, um, furniture, andthe thing that was most telling
was the stuff that I destroyedthat I actively went after was
mine.
Wasn't other people's stuff.
I hurt myself.
SPEAKER_00 (10:24):
Yes, you hurt yourself.
SPEAKER_04 (10:26):
That later told me that I was blaming myself for
who I was.
Like, I don't deserve to havethis nice toy.
Smash kind of thing.
Wasn't what I was thinking atthe time, but looking back, I
never hurt other people's stuff.
Not intentionally.
Occasionally there'd becollateral damage, you'd smash
out the door and a piece of woodflies and breaks a cup or
(10:48):
something.
That would be but yeah, what Iwas doing was I was hurting
myself.
SPEAKER_00 (10:54):
How long did it take you to be okay with who you
were?
SPEAKER_04 (11:01):
It was after my diagnosis when I was told I
could forgive myself.
Up until that point, I justdrove myself.
I just wanted, you know, to endthis this mortal toil kind of
thing and just get it over with.
I wasn't gonna take any activesteps.
I was a successful photographer,had many relationships, but they
only went so far because Icouldn't open up.
(11:23):
The scariest thing anyone canever say to me is I love you.
Because when I was a kid, thepeople who said I love you were
really saying, I'm gonna hurtyou.
I lived it actually.
I had to unlearn all of that.
SPEAKER_00 (11:38):
Yes.
That's what I'm saying.
FASD is so complex, it's socomplex because when you think
about it, the those people, Imean, I my biological mom wasn't
able to take care of me, plainand simple.
She didn't want me.
And there's all these differentthings that go along with that.
(12:00):
Now, my son, and you know, I'mtrying really hard not to tell
too much of his story, but I cansay that he is very angry, but
he's also only 12.
So he has a long time to workthrough it.
And he just found out, becauseyou know, that's another thing.
How honest should you be with achild who's working through and
(12:24):
finds out, well, what is FASD?
What does that mean?
And so, you know, we have triedto say things in a very
simplistic way, uh, which uhdoesn't really offer a lot of
blame anywhere, but he's veryangry and that this is his
brain.
(12:46):
So, you know, I find itinteresting that, you know, what
what do you how do you presentthis to somebody finding out for
the first time, young or old,and it of course it would be
different um how you present.
SPEAKER_04 (13:02):
Um especially with uh someone of that age, we have
to take into account a thinglike called dismaturity.
And that means different braindomains develop at different
rates.
So cognitive understanding maybe way different than say uh
actual physical age or executivefunction levels.
(13:26):
All of these things aredifferent.
Um so understand we need tounderstand first off where the
person is emotionally andcognitively, and how they can
take in that information.
unknown (13:39):
Right.
SPEAKER_04 (13:40):
So it may start with um something happened and your
brain is different.
And then you just leave it, andthen when the question comes,
why is my brain different?
Then you can start to talk aboutintroduction of alcohol, explain
that you know, pregnanciesaren't you know things with
(14:00):
bright shining lights and womendon't always know, and things
like that, and sort of bring theunderstanding along step by step
as the child asks, because wedon't want to overload them, we
don't want to trauma dump on ourchildren either.
SPEAKER_02 (14:17):
Right.
SPEAKER_04 (14:17):
So we want to keep the information in little
nuggets that they can use, andyou know they will process it
and they'll probably have morequestions, and then you can add
another little nugget to it, andthat way you can get a more
holistic understanding.
Um, something happened to bothmy mom and I.
SPEAKER_00 (14:35):
Okay, but if they're asking, you should answer.
SPEAKER_04 (14:38):
Yes, absolutely, absolutely, but you don't want
to overload them withinformation or a lot of
emotional baggage.
Uh, we all have our biases, andwe may be angry at uh the woman
who's the parent, but we cannotpass that on to the child.
(14:59):
We need to because one of theworst things that he can do is
is you know, sort of try andattack a mother-child bond, and
that's the way it would beinterpreted, and then the child
is not going to be open to theinformation because they think
it's going to be an attack onthem and their mom.
So again, um, we try to keep theinformation as age-appropriate
(15:21):
and in small enough chunks thatthey can digest it bit by bit,
and we can eventually get to thepoint where we're discussing
alcohol usage and how mistakeshappen and things like that.
It wasn't intentional.
SPEAKER_00 (15:36):
Yeah.
And you also uh thechronological age of a child
doesn't mean anything withsomebody who has fetal alcohol
um because uh for sure there'sregression and their
chronological age and theiremotional age is completely
different.
Completely different.
(15:57):
And I I know that it was for me,and I I still feel like I'm half
my age.
They were told, I was told whenI was younger that you know I
probably was about half my age.
So when I was like 16, I waslike an eight-year-old and
things like that.
And I I I still feel a lotyounger than I really am.
SPEAKER_04 (16:22):
Oh, me too.
Me too.
Um, like I still laugh at poopjokes.
SPEAKER_00 (16:28):
I do too, but they you know, it's a duty.
We have to laugh at those.
SPEAKER_04 (16:34):
Exactly.
Exactly, and that doesn'tnecessarily ever leave leave us.
It's not fake, it's you know,part of our personality, it's
our dismaturity.
If you look at uh like maturity,immaturity, that's a blanket,
that's all of your functions,all of your brain domains.
But dismaturity is like uh it'slike a mountain range of highs
(16:56):
and lows.
SPEAKER_00 (16:56):
Okay, talk about that though.
What exactly is dysmaturity?
SPEAKER_04 (17:01):
We have about 10 different brain domains, which
are areas of function in ourbrain.
Um like executive function,making decisions, um uh knowing
that if I'm gonna catch a bus, Ihave to leave at this time, um,
planning things like that.
(17:22):
Um, cognitive function is uh isa brain domain.
It's your understanding, yourability to communicate, you take
that information in and utilizeit properly or in a good way.
Also, not words.
Um and all of these differentdomains coupled with
(17:43):
chronological age, which is youknow basically where we're all
judged.
If you look like you're anadult, people are gonna treat
you like an adult.
Although what they can see isyou might have a cognitive age
of, like you were saying, uh,15, 14.
Your emotional age, how youreact emotionally, could be
(18:03):
eight or ten.
So part of the diagnoseddiagnostic process often
identifies these through theVineland uh adaptive scale and a
number of other tests that thatare part of the diagnostic
system.
We're able to better judge likewhere the different levels would
(18:24):
be.
And I really wish I had the fulllist in front of me.
It's it's really fascinating,and it really helps when you're
trying to look at brainfunction.
Okay, I'm I'm talking to someonewho physically is 18, but I know
cognitively they'reunderstanding me on the level of
12 years.
So for me to communicateeffectively to that person, you
(18:45):
don't want to talk down to them,but you definitely don't want to
talk over their heads either.
SPEAKER_00 (18:51):
The the tough part of it is their peers.
And because they don'tunderstand, and my kids look
pretty typical, um, even thoughwe have a mix of um the FASD
came with the George syndrome,um, which the George, I don't,
it's like a deleted chromosome,the 22nd chromosome, and it
(19:14):
oftentimes does come with fetalalcohol.
And when in it also, you know,there's the autism and ADHD.
And um, on top of it, I alsothose are my kids.
And then on top of it, I alsohad um the working memory and uh
(19:34):
the cognitive stuff as and theydo too.
And the eye, I had um likeno-depth perception, and my um
eyes don't converge, they don'tsee together.
So I always saw two ofeverything, which then my brain
was really kind and only allowsmy right side to work, and they
(19:59):
kind of work together a littlebit.
The brain is kind and it figuresit out, you know.
But it's it's really interestingwhen you have this A-Z bunch of
stuff all falling under whatalcohol did.
SPEAKER_04 (20:14):
Research done at the University of British Columbia
has identified 428 comorbiditiesthat come with FASD.
SPEAKER_00 (20:28):
Yes.
SPEAKER_04 (20:29):
Comorbidities are associated um effects, and that
can range from physical thingslike heart defects or um, you
know, a lung, obviously thecognitive and the CNS
difficulties, short stature, uh,small size, all of these things
(20:50):
are being noticed that arecaused by alcohol.
SPEAKER_00 (20:55):
Yeah.
So I mean, it it does, it itdeeply affects so many different
systems.
SPEAKER_04 (21:00):
So I have a presentation I've been giving,
I've rewritten it, I think,three times now.
It's called It's Complicated.
FASD, it's complicated becauseit really is.
It's you know, you don't have tolearn everything about FASD.
That's that's the good thing.
You just need to learn aboutyour FASD, where you're
affected, and you know, we cantake that.
(21:21):
But it's unfortunate that wehave to do that, and we have to
teach ourselves at this point ina lot of cases.
SPEAKER_00 (21:28):
Yeah.
Well, the clinic actually brokeit down pretty well for the
school, and I really appreciatedthat.
They they broke everything down,they told them what to expect,
even though you're looking at a12-year-old, this is who he
really is.
And I I appreciate that becauseyou know, um, lots of times they
(21:51):
think that the parent doesn'treally understand, even though I
really do.
And and anyway, that's fine.
They can have that.
But then when the doctor,doctors, big top neurological
people um come out and say, thisis what it is, you know, then
(22:14):
and and I think that not just Idon't know where Canadian
schools are with this, but I doknow that the US schools have
not really gotten a hold of thisyet.
SPEAKER_04 (22:26):
Um, we're seeing a lot more education.
I think we still need a longways to go in the general
education system.
But it's slowly starting tohappen that um it's filtering
down to uh understandingdifferent learning styles, even
(22:47):
and things like that.
Some of us learn by doing, someof us can learn by being told,
some of us can learn bywatching, some of us can just
read something and put ittogether in our mind and be able
to do it, but not all of us.
I have I learn experientially.
I have to screw it up, do itwrong the first time, and then I
(23:08):
can do it right.
And that was a frustration I'vealways had to live with.
You know, if if to open thedoor, you gotta turn it right, I
will always turn left first.
And I just I I've had tounderstand and accept that.
That I, you know, I I screw upthe first time every time.
SPEAKER_00 (23:26):
Me too.
You know, it's just somethingOh, I know it doesn't turn that
way.
SPEAKER_04 (23:32):
Why do I keep trying?
But I do.
SPEAKER_00 (23:34):
Yes, yes, and it's not intentional.
That's a thing.
Nope.
SPEAKER_04 (23:39):
Nope.
It's just the way my brainworks.
My my hand's gonna twist bothways, and that's really what it
is, is I'm just twisting bothways, but of course I know one
way doesn't work.
It doesn't stop me.
SPEAKER_00 (23:52):
Do you love do you love yourself right where you
are in life?
Uh strangely enough, yeah.
SPEAKER_04 (23:58):
I'm I've always think I've always been my own
biggest fan.
I hate to say that, but I'vealways been a cheerleader that
I've sort of, I don't know,maybe it's I'm a little bonkers
or something, but I haven't seenmyself the way other people have
seen me.
Because I've seen the totality,I know what I've had to do to
(24:20):
get where I am and to do thethings that I have to do.
Like you were talking aboutgoing to school, the amount of
work that I had to do.
So even though to other peoplethat might not be a big thing,
to me, that was like, yeah,that's an accomplishment.
SPEAKER_00 (24:34):
I can I can wear that.
But look at you now, RJ.
Look at you going all around theplace.
You're like an FASD ambassador,you are FASD famous, you know.
I mean, you really are.
And it's amazing what you haveaccomplished.
SPEAKER_04 (24:52):
Yeah.
Yeah, it it kind of blows mymind.
Um it's, I don't know, joy ofacceptance.
People can see that, you know,it's never gonna be perfect.
Nobody's life is, whether theyhave FASD or not.
And life is what you make it, isthe way I am.
(25:14):
You know, I struggled foreverand ever, and I'm going through
a good patch.
It's the way I look at itbecause I know nothing is
permanent.
As I was saying, I could behomeless tomorrow, but right now
I'm a very happy guy.
And yes, I like me.
SPEAKER_00 (25:29):
What made you want to take your life and
everything?
And this podcast is always aboutturning uh pain into purpose.
What made you want to do thatand actually become an advocate
for this and help others?
SPEAKER_04 (25:45):
I don't know.
I don't know.
SPEAKER_00 (25:47):
It just happened?
SPEAKER_04 (25:49):
It was uh a drive.
Um, when I first started toresearch about FASD when I got
my diagnosis, up until thatpoint, I had ignored everything
about it because I'd had so manydiagnoses over the year, I had
an alphabet soup behind my nameof all these different diagnoses
that I supposedly had.
So this is just another one.
(26:10):
However, when I did get it, andafter um I was told it wasn't my
fault, I had to go figure outwhat it was.
And the stuff I saw online washorrifying.
They'll never uh be able to liveon their own, they'll be in
jail, they'll all be drugaddicts, the girls are loose,
and the guys are addicted, andblah, blah, blah, blah, blah.
(26:34):
And it wasn't only opinions.
I was seeing professionals whowere telling people, well,
there's not much you can do forthem.
Put them in an institution orgood housing, and that's about
that just it made me angrybecause I knew that was not a
(26:57):
reality that I had to do.
I had been a successfulphotographer for a national TV
network.
I'd done that for years.
I was able to hold a job, I wasable to have relationships, I
have two kids.
It did not represent me as aperson with FASD at all.
So um I have a hungry spirit.
(27:20):
I had to learn more and I had tolearn more.
And the more I learned, I beganto see how wrong that talk-down
view of us was.
And yeah, I had to speak out.
I started stomping around in myred shoes and saying, Hey, you
guys, it ain't so.
Luckily, um, Jody Culp in theStates saw that and she asked me
(27:43):
why I was doing this.
And I told her because, and sheliked it.
She thought that would besomething that people could, you
know, grab onto in their ownlives and take that movement,
that idea forward that we'rebeing misrepresented, that we
are fantastic people.
We have a lot of talents, a lotof stuff we think that we can go
(28:06):
and we change the world justeven by thinking differently.
Everyone in the box says, goleft.
We say, let's take a look atwhat's on the right, maybe.
Might see something different.
SPEAKER_00 (28:18):
Yeah.
Well, whenever I hear that Ican't, because they did tell me,
you know, you're not gonnagraduate high school, you know,
all these other things.
And I just had this spirit in methat said, Well, yes, I am.
You know, they said I wouldn'tbe able to hit a ball.
I got one or two home runs.
Uh, they said I wouldn't be ableto ride a bike.
I rode a unicycle and a parade.
(28:40):
I was determined.
I'm like, not a bike.
Okay, give me one wheel.
So that's just the way that Ioperate, and I still do today.
So what I do want to hearthough, more about I see the red
shoe behind you.
Tell me about red shoes rock.
SPEAKER_04 (29:00):
Um well, the red shoes, they were a personal
statement.
Um, when I started speakingpublicly, I took the armor of
the people who had always keptme down.
I put on a suit and a nice tieand everything like that.
(29:20):
But I put the red shoes onbecause I'm subversive as
because you know I was takingtheir power clothes and using it
for my own and keeping true tomyself.
Now, theoretically, if you dosomething wrong or something
that's not acceptable, you arethen given a nice healthy dose
(29:44):
of shame.
When I get shame, I look down.
I look down and I see those redshoes, and I know that is not
warranted.
I look up, I've got fire in myeyes.
Come on, guys, let's go.
And that's where theconversation.
Begins.
For me, it was something becauseI didn't have someone, a support
(30:06):
person or anyone like that.
I um largely with the help offriends, started, you know, I I
basically bankrolled my firstpublic speech myself.
I paid for it.
We got a church basement forfree kind of thing, and we
invited people and the placesold out.
It was amazing.
(30:27):
So just getting those shoes andhaving them wearing them with a
suit, which is still gets a lotof looks.
Like when you're in the downtownfinancial district, and all
these other guys are all dressedup.
And they look down and they seethese silly runners.
They're like, oh, one of them,huh?
Yeah.
The original.
SPEAKER_00 (30:48):
I love it.
I still wear my Converse all thetime.
That's just who I am.
Yeah, oh, for sure.
And the the Red Shoes is itreally represents who you are.
It represents your personalityand everything.
I love it.
SPEAKER_04 (31:06):
Let's go out and get them.
SPEAKER_00 (31:08):
Do you know how how big is Red Shoes um rocks?
I mean it's it's pretty big.
SPEAKER_04 (31:15):
It is definitely international.
Um it's huge in areas like uhAustralia and New Zealand.
Um we have a book.
Oh my god.
Do you know about about our thebook from Germany?
SPEAKER_03 (31:34):
No.
SPEAKER_00 (31:35):
I don't.
Okay.
SPEAKER_04 (31:36):
I have so many neat things going on.
SPEAKER_03 (31:39):
Oh my gosh.
SPEAKER_04 (31:40):
Okay.
Woman in Germany wrote this.
It's all about red shoes.
And it's called the Red Shoes ofthe Wandering Mouse.
Is it in is it in English?
Yes.
This is an English translation.
And it tells the story of amouse who uh found some red
(32:01):
shoes in the adventures of thismouse.
Now, what's really neat about itis it's not based on me
specifically.
Oh, I like that red shoesthough.
SPEAKER_02 (32:15):
Yes.
SPEAKER_04 (32:17):
But um the author did reach out to me.
Have you ever seen the thepicture of me hanging out of a
tree?
I think so.
I think so.
So did she.
SPEAKER_00 (32:29):
Oh my gosh.
So what is what is the name ofthe of the character in there?
What what is the name?
SPEAKER_04 (32:39):
It's a mouse and a hedgehog.
So um it's the wandering mouse.
The red shoes are.
SPEAKER_00 (32:46):
Does it have anything to do with FASD?
Oh, absolutely.
SPEAKER_04 (32:50):
In fact, a whole section on why red shoes, all
about me, and why I started.
SPEAKER_00 (32:59):
Oh my gosh, RJ, that is so amazing.
SPEAKER_04 (33:04):
And it even ends with a little picture of me in
there.
SPEAKER_00 (33:08):
Do you know what that picture of you reminds me
of?
SPEAKER_04 (33:11):
What's that?
SPEAKER_00 (33:13):
Oh, what were we called?
I don't know.
Our initial, our uh initialpodcast, if that's what you want
to call it.
Where and and you were SwissCheese Brain Effect?
The Swiss Cheese Brain Effect.
SPEAKER_04 (33:30):
Yes.
Or how I learned to live withFSD, I think, was roughly.
It had a super huge, long title.
SPEAKER_00 (33:40):
Yeah, it did, but it was super fun.
And you had that coat.
We used that like figure to goalong with our little uh
Facebook group that we had, andthen we started the Yeah.
I mean, I think that that's sofun.
Do you see how huge you are,what you've created, how huge
(34:01):
this movement is?
SPEAKER_04 (34:03):
Yeah, it's it's extremely humbling.
Um, I love what people have donewith it.
And um sometimes it's like, whois that guy?
Who did it?
It's just like, wow, that can'tbe me.
Sometimes I have to give my mymy head a shake and go, yeah, I
have some value in the world.
SPEAKER_00 (34:23):
Who knew?
Oh my.
You know, you were put here onthis planet for a reason, and
that's what I really want peoplewith FASD to understand is that
we were put here for a reason.
We have a purpose, and don'tever let a definition or a
(34:44):
diagnosis define who you are andmake you feel less than or that
you're not capable of.
Because look at us, we both havethat same diagnosis.
We were both told all thenegatives, but look at us, look
what we've been able toaccomplish.
(35:06):
I think that that's so amazing.
I am really proud of you and howfar that you've come, RJ.
SPEAKER_04 (35:14):
Right back at you, Mustang, Annie.
SPEAKER_00 (35:18):
See, see, that's that was yes.
See, we've always been reallygood together.
SPEAKER_04 (35:25):
Uh oh, you and your red Mustang, classic.
SPEAKER_00 (35:30):
Which because I am a soccer mom now, I have a soccer
van that seven people.
This is not me.
I refuse to identify as like anykind of a soccer mom driving a
(35:51):
van, but I am still MustangAnnie riding in this van.
I am still that person.
SPEAKER_04 (35:59):
Exactly.
Exactly.
SPEAKER_00 (36:02):
So, what do you want people to know about FASD?
Like, what what how can you helppeople who have FASD?
What do you want them to know,RJ?
It's not your fault.
SPEAKER_04 (36:24):
It's the creator gave us all individually
challenges, um, some more thanothers.
However, I also believe thatwith the challenges come gifts
that are unique, and it's takingus sometimes a while to find
them because they might behidden.
(36:47):
But when we're able to go withtalents and follow those roads,
and the gifts can becomeapparent.
So um yeah, it's not about thediagnosis, there's a whole lot
more going on, and you havegifts that at this point you
might not even be able toimagine, but just grow with it,
(37:10):
give it some time.
Brains develop at a differentpace for people with FASD.
So often we don't even hit ourstride until we're in our 40s.
SPEAKER_00 (37:22):
Oh, do you know?
That's really interesting thatyou say that because I feel more
capable now than I did when Iwas younger.
I watch what other people I justfeel like I have just become me
and able to do the things that Ishould have been doing in my 30s
(37:42):
and 40s that I was not able todo.
And now I can do them.
It's so crazy.
SPEAKER_04 (37:50):
Yeah, that's because um the assumption is by the time
you're 30 or neurotypical, yourbrain-building functional days
are pretty well over.
We're still building brain cellswell into our late 40s,
apparently, because the humanbody, the creator is amazing.
(38:12):
Um, our brains are what we callneuroplastic, plastic meaning
malleable.
So it's often trying to, youknow, fix things, as you were
talking about earlier.
The brain can do an amazing jobjust on its own, trying to make
things work.
Yeah, we found that thetrajectory for people with FASD
(38:34):
is a lot longer.
There's actually a catch-upperiod that has been identified
between 30 and 40.
It's a brain process calledmyelination.
Now, imagine um our thoughtprocesses as gravel roads.
We think a little slowly, ourprocessing's a little slow.
So you got this gravel road, youhave another gravel road,
(38:56):
another thought process, anotherthought process.
What happens with myelination isit's like almost the insulation
on a cable grows around thesedifferent synapses, binds them
together almost like asuperhighway.
And when that happens, there's afatty subsubstance called myelin
that's built into this.
(39:18):
It speeds up the transmission ofthoughts.
It's a catch-up period.
Our thinking gets clearer, we'rebetter able to do things and put
things together.
And that generally seems to behappening between 30 and 40.
Now we need a lot more researchon it.
There's only been minimal workdone on it, but I'm very excited
about that because I see itconstantly with the people I
(39:40):
work with daily, that um at acertain point, suddenly things
are all starting to click.
SPEAKER_00 (39:48):
How do you well, first off, I want to say this.
When I was a kid, I um reallywasn't able to put sentences
together very well.
And now I'm doing a podcast.
It took decades for me to beable to do this.
I mean, I still have helps withsome notes and things like that
(40:09):
that I keep in front of me whenI interview people, but you
know, I never was able to putsentences, paragraphs, and be
able to communicate.
I used to write notes to peopleand give it to them when I was
younger, even in my 20s.
And I know that people thoughtthat I was really strange, but
(40:32):
if I really wanted to saysomething and be able to convey
it in a way that made sense, andand the way I really wanted to
say it, I needed to write itdown and give it to them.
Because I trusted that.
But and I knew I couldn't trustmy own mouth to for it to say
what I really wanted to.
(40:54):
But now I'm much better at it.
It it took that many years formy brain to develop that part of
the brain for me to be able todo it.
SPEAKER_04 (41:05):
Yet you were able to write.
And now, here's the flip side ofthat coin.
It wasn't until I met you and westarted discussing these things,
and I started to understand thatI could write like I talk.
Because I've always been able totalk.
Yeah, even till that point,whenever I tried to write, I was
pretending to be somebody else.
(41:25):
It wasn't authentic, it felt Icouldn't even stand it.
I even to this day, I cannotstand reading my old writing
because I was trying to besomebody else.
But through our conversationsand everything, I learned from
you that it's possible to justtalk and use that.
(41:50):
And that changed everythingbecause now I'm able to talk out
what I want to say and I writeit down.
Yeah, just be like the flip sideof what you're talking about.
SPEAKER_00 (42:05):
Mm-hmm.
SPEAKER_04 (42:06):
That's kind of cool.
SPEAKER_00 (42:08):
Well, I think that we were meant to meet.
SPEAKER_02 (42:12):
Absolutely.
SPEAKER_00 (42:14):
Because I think that we both helped each other get to
where we are today, you know,long years ago, but we we really
believed in each other.
And I think that we still reallybelieve in each other, and we
will always be each other'scheerleaders.
I I'm always like going on andwatching everything that you're
(42:35):
doing, and I just am so proud ofeverything that you're doing
because I know where you were,and I know where you are.
I what how many crowds?
I mean, like, how often do youspeak?
Like, what are the crowd sizesthat you speak in front of?
SPEAKER_04 (42:54):
Oh, I actually tend to like to accept a lot of
smaller and medium-sizedinformants or less.
Um, um I love doing like a classsize, sometimes 20 or 30.
Those are those are great.
They're they're veryinteractive.
But you know, I I can also talkto a thousand people at the same
(43:15):
time.
So for me, the crowd size isn'tso much the big thing as being
able to get in intimacy with thecrowd.
Um the the first thing I I telleveryone is number one, if you
got it, give me a wireless mic.
Number two, I'm gonna go awayfrom the podium.
(43:36):
And then I'm going to walk tothe audience.
If it's a riser or something, Ican walk into the audience.
If I have to go down the stairsand decide that's distracting, I
can't do it.
So a lot of it is dependent onwhere I am and how it's set up.
But um, for me, I don't want theprosemium arch, that arch on the
(44:01):
stage, to be a separator.
Because I don't want to beseparate from the people I'm
talking to.
If possible, I want to have themaround so we can have a circle
of patients.
So for me, uh crowd size isn't abig thing, and I'm lucky that
way because I know a lot ofpeople suffer.
And uh, you also have toremember, I also did a stint on
(44:24):
stage as a drummer when I wasyounger.
So that's true.
Um sort of on stage and not evenseeing the audience sometimes.
SPEAKER_00 (44:34):
Yes, yeah.
And that's uh, you know, I findit really interesting that we
use our voice, and and you know,because it was so difficult for
us at in parts of our lives tobe able to use our voice, and I
so I love that that's such um apowerful way that we're using it
today.
Do you consider yourself a lifecoach?
(44:54):
Is that what you do?
Do you work one-on-one withpeople at all?
SPEAKER_04 (44:58):
Um, I have mentored people over the years, okay, but
I don't coach.
Coaching is short term, and whenI take someone on, it's often
for years.
And um yeah, I have a number ofpeople who through the years I
have mentored who have gone on,but we're still in constant
(45:21):
contact because I do not wantthem to feel that support is
suddenly cut off.
The problem with dealing with alot of professionals is that
they'll be there for you oneday, but then they get another
job in another department andthey're gone.
And that personal lost.
So for me, anyone that I do workwith, which I try to keep to a
(45:42):
minimum, obviously, because ofall my other work, it becomes a
years-long project at thatpoint.
I don't just, you know, letpeople go.
And when they're ready to moveon to, you know, other supports
and things like that, that'stheir decision.
SPEAKER_00 (45:58):
Mm-hmm.
That's really awesome.
Um, that you do that.
Um again, there's no limit towhat you're doing.
How can families and individualsstart advocating in their own
communities?
SPEAKER_04 (46:16):
Oh, um, it starts with speaking your own truth,
your own experience on how yousee things.
Uh there are a lot of um FASDgroups, especially around
September, September 9th beingInternational FASD Day, and just
going out to an event andtalking to the people running
(46:37):
the little booths andeverything.
And you can get incredibleconversations, you can find out
incredible information, and youcan also probably start
impressing the organizers whenthey see someone who's
interested.
And then if you have, you know,a story to tell or whatever,
that can work into us.
So often it it starts with umsupport groups that do public
(47:02):
outreach and public events.
SPEAKER_00 (47:04):
Okay.
Well, we need more of those inthe United States.
We just really don't have them.
SPEAKER_04 (47:10):
I I that's the thing that really thrills me the most
um at this previous conference Iwas at.
There were like 110 people withFASD who were there.
Advocates, people who work inthe system, people, parents, and
things like that.
It was incredible to see thisgiant wall of advocacy.
(47:32):
And yeah, I feel really goodwhen I see all these people
coming up behind because it waspretty lonely for a long time.
There were only a few of us whowere out there stomping around,
going to stage the stage.
And the most amazing thing aboutthis, all this advocacy, and
it's not a competitive arena.
(47:54):
It's not about who's the bestwho got more people or whatever.
We help each other.
And I've never worked anywherewhere we're not competing with
each other.
We're all going for the samecause, and that's you know, to
get the proper right informationout there so we can help people.
SPEAKER_00 (48:13):
So we know a lot more now than we did, would you
say?
I mean, is there an impact,would you say, with all the work
that you're doing?
SPEAKER_04 (48:21):
Oh, absolutely, absolutely.
It's even um how many peoplehave never even discussed the
possibility with their or evenwith their physician?
Uh one of the big problems thatwe have are physicians who are
not trained.
And then even worse, we havephysicians who are not trained
but think they are.
(48:42):
So yeah, there's there's still along way to go, and we have a
lot of work to do, but changingsystems takes time, and you
know, we're we're not goinganywhere.
We got all the time in the worldto do it, dude.
SPEAKER_00 (48:57):
Yeah.
Well, I mean, in the indigenouspopulation, there is a lot of
FASD, is it not?
I mean, and and I don't knowwhere that stemmed from, or
maybe that's just a myth.
I'm not really sure.
Is that a myth?
SPEAKER_04 (49:15):
That actually is uh a horrible stigma.
SPEAKER_00 (49:19):
Okay.
SPEAKER_04 (49:20):
Um it's more based on the fact that our population
size is so small.
unknown (49:27):
Okay.
SPEAKER_04 (49:28):
It's not that we're necessarily affected to a
greater degree, it's just thatum historically people from the
dominant society were getting umum um autism diagnoses for the
same thing and stuff like that.
There was a lot of that becauseobviously there's a factor with
(49:53):
an FASD diagnosis a lot ofpeople didn't want to deal with.
So, but in the native community,it was seen for what it was
because the introduction ofalcohol has just been within the
last 500 years.
We're better able to gauge that.
Europeans grew up with it, it'sbeen generational.
(50:15):
We rarely had you know a fewfermented fermented berries or
something in the fall would beour alcohol exposure.
So, and because of that, we'relike the canary in the coal
mine, and the research wasinitially done on native people.
(50:35):
So the story started to be it'sa native people problem, but
we've since found that itcrosses all societal barriers,
it crosses all financialbarriers.
FASD is real and it affectseveryone, every group.
SPEAKER_00 (50:51):
Yeah, yeah, it really does.
SPEAKER_04 (50:53):
Now there are the exceptions, um, say like Amish
and other groups thathistorically do not partake in
alcohol.
However, kids are kids, andthings do happen, and no
particular group can say there'sno FASD.
I've heard groups say that, andlike no, human beings are human
(51:13):
beings, they're gonnaexperiment, things are gonna
happen.
SPEAKER_00 (51:17):
And it's it's so much wider than we could ever
put a number on.
I mean, the statistics that Iput out there at the beginning,
you know, I I really think thatthat's just probably a very
small percentage of what isreally there.
SPEAKER_04 (51:30):
Mm-hmm.
Oh, yeah.
Um I would think that one daywe're gonna be looking at 25%,
either FASD or fetal alcoholaffected.
SPEAKER_00 (51:44):
Right.
Okay.
SPEAKER_04 (51:45):
Because even if like my kids don't have FASD,
however, genetically, due tosome of the changes in me,
that's gonna be carried onthrough them.
SPEAKER_00 (51:56):
Okay.
Is that what that means?
SPEAKER_04 (51:58):
Yeah, we don't have a lot of real research into that
now, and they're they're lookinginto it in like the epigenetics,
not so much that the geneschange, but how they express
themselves, how they fire offwhen and where.
That can change due to alcoholexposure in the parent.
SPEAKER_00 (52:17):
Okay, so the parent has it, and so then they nobody
drank, but they do have effectsbecause the parent had it.
SPEAKER_04 (52:27):
Some can, and research is indicating it's
possible.
SPEAKER_00 (52:32):
That would be the genetic piece, right?
I mean, I would think that therewould be some genes that would
be passed down.
SPEAKER_04 (52:38):
There is an intergenerational effect, even
if there is no alcohol directlyindicated, it can come from
previous generations.
So I'm saying it's going to endup being 25% or more because all
of these generations backcausing genetic effects that we
don't yet understand, and oneday we will.
SPEAKER_00 (53:01):
You know, this has been such a great conversation.
I have so loved having you on.
I mean, it just I want to dothis again.
I mean, I think that for one,for one thing, we're really good
together.
For another thing, you know, Ijust don't think that, like I
(53:22):
said at the beginning, I justdon't think people really
understand what this is.
And you are such an amazingmouthpiece.
So, how can they contact you?
Red shoes rock, flying withbroken wings, and all the stuff.
SPEAKER_04 (53:42):
Yep, that's it.
I'm everywhere.
It's it's easy to find me.
Best place, of course, is onFacebook because I monitor, I
run the group, and I'm in likean active admin.
So if you can message me onFacebook, that's usually the
quickest way.
My email is out everywhere,mrstartpointrod at gmail.com.
Um, I'm easy to get a hold of ifyou're looking for me.
(54:05):
And it if it gets reallydifficult, find someone that
knows me.
They'll send you to me.
It's easy.
SPEAKER_00 (54:13):
Yeah, they can find me.
I can send them to you.
Everybody does know RJ, or Icould say Rod.
SPEAKER_04 (54:22):
Absolutely.
You absolutely could.
SPEAKER_00 (54:25):
Because I know what RJ stands for.
SPEAKER_04 (54:27):
So do I.
SPEAKER_00 (54:28):
Any more information about FASD before I close?
Anything else you want to say?
SPEAKER_04 (54:34):
Tomorrow's another day.
Tomorrow is always another day.
No matter how hard it getstoday, tomorrow is another day.
SPEAKER_00 (54:45):
My thing is look at you.
Look at RJ Formanac.
Look at what he's accomplishing.
I will get off of here today andI will go talk to my kids, and I
will show them parts of this,and I will hopefully someday you
can meet my kids, you know, overZoom or something, especially my
(55:09):
one son.
I really want him to meet youbecause I want him to see look
at you, look at what you'veaccomplished, look how look how
successful you are.
I don't want shame and trauma todefine anybody that has FASD.
(55:30):
I think that that's one of mybiggest messages.
And that you can't.
Yeah.
And that you can.
You can.
Don't let anybody tell you thatyou can't.
We might just need a little bitmore time to do it.
We might just need a little bitmore processing time.
We might be able to just, youknow, we might forget and then
(55:52):
have to relearn it.
But you know what?
We can.
unknown (55:57):
Yeah.
SPEAKER_04 (55:58):
All we're asking for is the chance, and we're gonna
knock your socks off.
SPEAKER_00 (56:03):
Well, RJ, thank you so much for being here today and
for all that you do.
You have given so many people,myself included, language,
community, and hope for ourlisteners.
If you or someone you love isliving with FASD, please know
that you are not alone.
(56:24):
There's a whole community outthere walking this same path.
You can find RJ, like we said,on Flying with Broken Wings on
Facebook and through Red ShoesRock, both incredible spaces for
awareness, support, andconnection.
And as always, thank you forlistening to Real Talk with Tina
and Anne.
You know, hit the like button,subscribe, go to the website,
(56:46):
and on our website, you know,you will find a lot of really
amazing things because webelieve that our differences
aren't deficits.
They are the wings that help usfly.
So thank you, RJ, for being ontoday.
I love you, brother.
SPEAKER_04 (57:04):
I love you.
It's been a pleasure.
Let's do it again.
Welcome to Real Talk with Tina and Anne.
I am Anne, and today you aregoing to listen to part two of
the conversation that I havewith RJ Format because he helped
us understand FASD through realstories, lived truth, and that
rare mix of honesty and heartthat only he and I both can
(00:29):
bring to the table because we'veknown each other for over 15
years.
In this next part, we get intothe things people really talk
about, the shame that shadows somany, the relief that comes from
hearing this is not your fault,and the lifelong learning curve
of living in a world that isn'tbuilt with neurodivergent minds
(00:51):
in mind.
RJ opens up about identity,relationships, support systems,
and the daily work of showing upfor yourself even when the world
misunderstands you.
And let me tell you, some ofwhat he shares here is the kind
of insight that stays with youlong after the episode ends.
And it's good advice even if youdon't know somebody with FASD.
(01:14):
This is some powerful stuff.
So take a breath, settle in, andlet's pick up right where we
left off, because this nextpiece of the conversation really
matters.
Thank you, RJ Formanac fromFlying with Broken Wings and Red
Shoes Rock.
Look it up.
They are both great spaces foranybody with FASD or anybody who
knows somebody with FASD.
(01:35):
We really learn a lot about RJand me in this episode, and it
is really, really fun and greatand inviting and all the things.
So listen to the whole thing.
It's really worth it.
This is part two.
I think that you touched onsomething too.
And I don't know if everybodywith FASD has this because I'm
sure that a lot of us are verydown and out and go through the
(02:00):
seasons of pain and shame andall of those things.
And I'm not saying that thosearen't a part of it.
What I'm saying is theresilience factor is so strong.
And I the the I always have theglasses half full take on
things.
And I don't know where thatcomes from.
(02:22):
People have often said to me, Idon't know how in the world
you're able to do all thatyou're doing and have such a
positive outlook all the time.
And it's not something I'm evenforcing myself to do.
It's just there.
And I just wake up the next dayand I've got this really like
let's go.
(02:43):
And I don't know.
SPEAKER_04 (02:45):
No, you do know.
Every day is a new day.
Is that why?
Yes.
For for us, when we wake up,it's a brand new day.
SPEAKER_00 (02:56):
Is it like short-term memory person on
Saturday Night Live?
SPEAKER_04 (03:01):
Kind of, kind of like, yeah, it's kind of like
Groundhog Day.
It's like, yeah, however I feltyesterday, I'm probably going to
feel the same way tomorrow whenI wake up.
I'm happy, I'm ready to go.
Like when I was a kid, thatmoment is still there.
Um when I sleep and I'm we'restill trying to figure out if
this is a trauma thing or abrain thing.
(03:22):
I don't dream.
I do not dream.
Occasionally I have littleglimpses of what I think might
have been a dream, but thatthat's sort of in that period of
halfway between awake and thesleep.
SPEAKER_00 (03:34):
Like you've been tested, you've been tested, and
you don't go into REM.
SPEAKER_04 (03:40):
Um I do, but when I go to sleep, my brain seems to
shut off.
It's black, it's like I don't,I'm not conscious of the length
of time that I'm sleeping.
It's like turning out a light, Iturn it on, and it's a brand new
day.
It's a really weird, it'sdefinitely strange.
(04:01):
So if I was super stressed outwhen I went to sleep, I wake up
at at least at first, it's stilla brand new day.
Then the memory starts to come.
SPEAKER_00 (04:13):
Okay, that's really interesting because that 100%
happens to me.
I wake up and it takes a whilefor me to realize what my day is
going to be, what happenedyesterday, those thoughts and
memories and everything startcoming back, but it does take a
while.
(04:33):
It doesn't come right when Iwake up.
And I never put that togetherbefore.
SPEAKER_04 (04:38):
I I give myself, and I'm able to do this because I'm
not raising kids, the grace oftwo hours automatically.
And that's because my brain islike uh an old, you know, um an
old Windows computer from like1990.
It takes all the differentprocesses starting up take time.
SPEAKER_03 (05:00):
Yeah.
SPEAKER_04 (05:01):
And I I call it it's giving myself grace,
understanding that don't make memake decisions in that first two
hours.
Don't make me converse in thosefirst two hours because I'm just
trying to get everything online.
And if I do, you know, I couldbe angry, I could be curt, I
could make a decision that I'mreally gonna regret in in an
(05:24):
hour and a half when I thinkabout it.
So yeah, I try um if I have likea 7 a.m.
uh start for an event, I'm wayup four or five.
And that's just to get my braingoing.
SPEAKER_00 (05:41):
Yeah, I mean it I need that time too.
I absolutely need that time.
I'm homeschooling one of my kidswho also has um quite a few
differences, and he has, I'msure he's gonna end up with the
diagnosis as well.
He's next to go to the clinic,um, but he can't handle all the
(06:02):
noises and the social stuff andeverything.
It's just a lot, and he is done,he's spent within an hour of
being anywhere, so we um keephim pretty close.
And he's nine, but yeah, I mean,it's it's really difficult for
him as well to um to do life,and so uh we have quite the
(06:27):
routine.
We have a routine, and routineis very important to us.
But like you were saying, youneed that morning time.
I know when I need to get up toget my other son off to school
to be able to work with my oneson that I'm homeschooling, and
I need that time.
I know what I need in order tostart a productive day, to be
(06:51):
productive with him.
SPEAKER_04 (06:52):
It works for the kids too.
I had a parent that I suggestedthat to.
Her kids were um just fightingand melting down two boys around
the same age going to school andgetting them up early and just
allowing them some quiet timeeach by themselves, it improved
things immensely.
And it also helped them inschool because they weren't
(07:13):
coming to school fighting withtheir brother.
SPEAKER_00 (07:15):
Did you have meltdowns?
SPEAKER_04 (07:18):
I wasn't allowed.
Okay, if that makes any sense.
Um yeah, and also because of thelife with my mother, I had I had
to take on a caretaker role manytimes for my two younger
sisters.
So I didn't have the luxury if Imelted down, we didn't have
(07:44):
breakfast or nobody made lunch.
So um, in those moments, I justhad to learn to buckle down and
uh yeah, I'd have my meltdownlater.
I'd go jump on trains to go toschool.
I used to run across the top ofthe boxcars back when they had
the the running boards on theroofs.
It's a long time ago.
First time I got arrested, I wasseven years old.
(08:07):
I was running on a train and thecops caught me.
SPEAKER_00 (08:10):
You know what though?
You you just proved somethingabout who we are.
What comes along a lot of timeswith FASD is also what we talked
about very early, the traumapart of it.
But I also had to take care ofmy mom.
My dad had passed away, and shewas my adopted mom, and I had to
(08:32):
take care of her.
I felt that I had to take careof her and my sister, who ended
up giving, you know, being putback into the system.
There is so much that comesalong with just the fact that we
were either adopted or put inother homes or that we have to
(08:53):
take care of the people whoshould be taking care of us.
There's so many layers that arethere that are at and that we
can do it.
I mean, we're placed insituations that really are above
us.
It's hard for our brains to evendo those things, but yet we're
(09:14):
figuring it out.
We had to figure it out really,really young, because the people
who were supposed to be thestability in the home, they
weren't the stability in thehome.
So you take our FASD brain, andwe're the ones having to step up
to be the caretakers, to be thestrong ones, to be the resilient
(09:36):
ones.
And I think that that does carryon into who we become as adults.
SPEAKER_04 (09:43):
Oh, however, when I was in a safer environment, I
would rage.
I wouldn't just melt down, Iwould have rage.
See, and you know, I think back,that was more than just what was
going on in the moment.
That was everything coming out,just this toxic slut and uh that
(10:07):
busted doors, um, furniture, andthe thing that was most telling
was the stuff that I destroyedthat I actively went after was
mine.
Wasn't other people's stuff.
I hurt myself.
SPEAKER_00 (10:24):
Yes, you hurt yourself.
SPEAKER_04 (10:26):
That later told me that I was blaming myself for
who I was.
Like, I don't deserve to havethis nice toy.
Smash kind of thing.
Wasn't what I was thinking atthe time, but looking back, I
never hurt other people's stuff.
Not intentionally.
Occasionally there'd becollateral damage, you'd smash
out the door and a piece of woodflies and breaks a cup or
(10:48):
something.
That would be but yeah, what Iwas doing was I was hurting
myself.
SPEAKER_00 (10:54):
How long did it take you to be okay with who you
were?
SPEAKER_04 (11:01):
It was after my diagnosis when I was told I
could forgive myself.
Up until that point, I justdrove myself.
I just wanted, you know, to endthis this mortal toil kind of
thing and just get it over with.
I wasn't gonna take any activesteps.
I was a successful photographer,had many relationships, but they
only went so far because Icouldn't open up.
(11:23):
The scariest thing anyone canever say to me is I love you.
Because when I was a kid, thepeople who said I love you were
really saying, I'm gonna hurtyou.
I lived it actually.
I had to unlearn all of that.
SPEAKER_00 (11:38):
Yes.
That's what I'm saying.
FASD is so complex, it's socomplex because when you think
about it, the those people, Imean, I my biological mom wasn't
able to take care of me, plainand simple.
She didn't want me.
And there's all these differentthings that go along with that.
(12:00):
Now, my son, and you know, I'mtrying really hard not to tell
too much of his story, but I cansay that he is very angry, but
he's also only 12.
So he has a long time to workthrough it.
And he just found out, becauseyou know, that's another thing.
How honest should you be with achild who's working through and
(12:24):
finds out, well, what is FASD?
What does that mean?
And so, you know, we have triedto say things in a very
simplistic way, uh, which uhdoesn't really offer a lot of
blame anywhere, but he's veryangry and that this is his
brain.
(12:46):
So, you know, I find itinteresting that, you know, what
what do you how do you presentthis to somebody finding out for
the first time, young or old,and it of course it would be
different um how you present.
SPEAKER_04 (13:02):
Um especially with uh someone of that age, we have
to take into account a thinglike called dismaturity.
And that means different braindomains develop at different
rates.
So cognitive understanding maybe way different than say uh
actual physical age or executivefunction levels.
(13:26):
All of these things aredifferent.
Um so understand we need tounderstand first off where the
person is emotionally andcognitively, and how they can
take in that information.
unknown (13:39):
Right.
SPEAKER_04 (13:40):
So it may start with um something happened and your
brain is different.
And then you just leave it, andthen when the question comes,
why is my brain different?
Then you can start to talk aboutintroduction of alcohol, explain
that you know, pregnanciesaren't you know things with
(14:00):
bright shining lights and womendon't always know, and things
like that, and sort of bring theunderstanding along step by step
as the child asks, because wedon't want to overload them, we
don't want to trauma dump on ourchildren either.
SPEAKER_02 (14:17):
Right.
SPEAKER_04 (14:17):
So we want to keep the information in little
nuggets that they can use, andyou know they will process it
and they'll probably have morequestions, and then you can add
another little nugget to it, andthat way you can get a more
holistic understanding.
Um, something happened to bothmy mom and I.
SPEAKER_00 (14:35):
Okay, but if they're asking, you should answer.
SPEAKER_04 (14:38):
Yes, absolutely, absolutely, but you don't want
to overload them withinformation or a lot of
emotional baggage.
Uh, we all have our biases, andwe may be angry at uh the woman
who's the parent, but we cannotpass that on to the child.
(14:59):
We need to because one of theworst things that he can do is
is you know, sort of try andattack a mother-child bond, and
that's the way it would beinterpreted, and then the child
is not going to be open to theinformation because they think
it's going to be an attack onthem and their mom.
So again, um, we try to keep theinformation as age-appropriate
(15:21):
and in small enough chunks thatthey can digest it bit by bit,
and we can eventually get to thepoint where we're discussing
alcohol usage and how mistakeshappen and things like that.
It wasn't intentional.
SPEAKER_00 (15:36):
Yeah.
And you also uh thechronological age of a child
doesn't mean anything withsomebody who has fetal alcohol
um because uh for sure there'sregression and their
chronological age and theiremotional age is completely
different.
Completely different.
(15:57):
And I I know that it was for me,and I I still feel like I'm half
my age.
They were told, I was told whenI was younger that you know I
probably was about half my age.
So when I was like 16, I waslike an eight-year-old and
things like that.
And I I I still feel a lotyounger than I really am.
SPEAKER_04 (16:22):
Oh, me too.
Me too.
Um, like I still laugh at poopjokes.
SPEAKER_00 (16:28):
I do too, but they you know, it's a duty.
We have to laugh at those.
SPEAKER_04 (16:34):
Exactly.
Exactly, and that doesn'tnecessarily ever leave leave us.
It's not fake, it's you know,part of our personality, it's
our dismaturity.
If you look at uh like maturity,immaturity, that's a blanket,
that's all of your functions,all of your brain domains.
But dismaturity is like uh it'slike a mountain range of highs
(16:56):
and lows.
SPEAKER_00 (16:56):
Okay, talk about that though.
What exactly is dysmaturity?
SPEAKER_04 (17:01):
We have about 10 different brain domains, which
are areas of function in ourbrain.
Um like executive function,making decisions, um uh knowing
that if I'm gonna catch a bus, Ihave to leave at this time, um,
planning things like that.
(17:22):
Um, cognitive function is uh isa brain domain.
It's your understanding, yourability to communicate, you take
that information in and utilizeit properly or in a good way.
Also, not words.
Um and all of these differentdomains coupled with
(17:43):
chronological age, which is youknow basically where we're all
judged.
If you look like you're anadult, people are gonna treat
you like an adult.
Although what they can see isyou might have a cognitive age
of, like you were saying, uh,15, 14.
Your emotional age, how youreact emotionally, could be
(18:03):
eight or ten.
So part of the diagnoseddiagnostic process often
identifies these through theVineland uh adaptive scale and a
number of other tests that thatare part of the diagnostic
system.
We're able to better judge likewhere the different levels would
(18:24):
be.
And I really wish I had the fulllist in front of me.
It's it's really fascinating,and it really helps when you're
trying to look at brainfunction.
Okay, I'm I'm talking to someonewho physically is 18, but I know
cognitively they'reunderstanding me on the level of
12 years.
So for me to communicateeffectively to that person, you
(18:45):
don't want to talk down to them,but you definitely don't want to
talk over their heads either.
SPEAKER_00 (18:51):
The the tough part of it is their peers.
And because they don'tunderstand, and my kids look
pretty typical, um, even thoughwe have a mix of um the FASD
came with the George syndrome,um, which the George, I don't,
it's like a deleted chromosome,the 22nd chromosome, and it
(19:14):
oftentimes does come with fetalalcohol.
And when in it also, you know,there's the autism and ADHD.
And um, on top of it, I alsothose are my kids.
And then on top of it, I alsohad um the working memory and uh
(19:34):
the cognitive stuff as and theydo too.
And the eye, I had um likeno-depth perception, and my um
eyes don't converge, they don'tsee together.
So I always saw two ofeverything, which then my brain
was really kind and only allowsmy right side to work, and they
(19:59):
kind of work together a littlebit.
The brain is kind and it figuresit out, you know.
But it's it's really interestingwhen you have this A-Z bunch of
stuff all falling under whatalcohol did.
SPEAKER_04 (20:14):
Research done at the University of British Columbia
has identified 428 comorbiditiesthat come with FASD.
SPEAKER_00 (20:28):
Yes.
SPEAKER_04 (20:29):
Comorbidities are associated um effects, and that
can range from physical thingslike heart defects or um, you
know, a lung, obviously thecognitive and the CNS
difficulties, short stature, uh,small size, all of these things
(20:50):
are being noticed that arecaused by alcohol.
SPEAKER_00 (20:55):
Yeah.
So I mean, it it does, it itdeeply affects so many different
systems.
SPEAKER_04 (21:00):
So I have a presentation I've been giving,
I've rewritten it, I think,three times now.
It's called It's Complicated.
FASD, it's complicated becauseit really is.
It's you know, you don't have tolearn everything about FASD.
That's that's the good thing.
You just need to learn aboutyour FASD, where you're
affected, and you know, we cantake that.
(21:21):
But it's unfortunate that wehave to do that, and we have to
teach ourselves at this point ina lot of cases.
SPEAKER_00 (21:28):
Yeah.
Well, the clinic actually brokeit down pretty well for the
school, and I really appreciatedthat.
They they broke everything down,they told them what to expect,
even though you're looking at a12-year-old, this is who he
really is.
And I I appreciate that becauseyou know, um, lots of times they
(21:51):
think that the parent doesn'treally understand, even though I
really do.
And and anyway, that's fine.
They can have that.
But then when the doctor,doctors, big top neurological
people um come out and say, thisis what it is, you know, then
(22:14):
and and I think that not just Idon't know where Canadian
schools are with this, but I doknow that the US schools have
not really gotten a hold of thisyet.
SPEAKER_04 (22:26):
Um, we're seeing a lot more education.
I think we still need a longways to go in the general
education system.
But it's slowly starting tohappen that um it's filtering
down to uh understandingdifferent learning styles, even
(22:47):
and things like that.
Some of us learn by doing, someof us can learn by being told,
some of us can learn bywatching, some of us can just
read something and put ittogether in our mind and be able
to do it, but not all of us.
I have I learn experientially.
I have to screw it up, do itwrong the first time, and then I
(23:08):
can do it right.
And that was a frustration I'vealways had to live with.
You know, if if to open thedoor, you gotta turn it right, I
will always turn left first.
And I just I I've had tounderstand and accept that.
That I, you know, I I screw upthe first time every time.
SPEAKER_00 (23:26):
Me too.
You know, it's just somethingOh, I know it doesn't turn that
way.
SPEAKER_04 (23:32):
Why do I keep trying?
But I do.
SPEAKER_00 (23:34):
Yes, yes, and it's not intentional.
That's a thing.
Nope.
SPEAKER_04 (23:39):
Nope.
It's just the way my brainworks.
My my hand's gonna twist bothways, and that's really what it
is, is I'm just twisting bothways, but of course I know one
way doesn't work.
It doesn't stop me.
SPEAKER_00 (23:52):
Do you love do you love yourself right where you
are in life?
Uh strangely enough, yeah.
SPEAKER_04 (23:58):
I'm I've always think I've always been my own
biggest fan.
I hate to say that, but I'vealways been a cheerleader that
I've sort of, I don't know,maybe it's I'm a little bonkers
or something, but I haven't seenmyself the way other people have
seen me.
Because I've seen the totality,I know what I've had to do to
(24:20):
get where I am and to do thethings that I have to do.
Like you were talking aboutgoing to school, the amount of
work that I had to do.
So even though to other peoplethat might not be a big thing,
to me, that was like, yeah,that's an accomplishment.
SPEAKER_00 (24:34):
I can I can wear that.
But look at you now, RJ.
Look at you going all around theplace.
You're like an FASD ambassador,you are FASD famous, you know.
I mean, you really are.
And it's amazing what you haveaccomplished.
SPEAKER_04 (24:52):
Yeah.
Yeah, it it kind of blows mymind.
Um it's, I don't know, joy ofacceptance.
People can see that, you know,it's never gonna be perfect.
Nobody's life is, whether theyhave FASD or not.
And life is what you make it, isthe way I am.
(25:14):
You know, I struggled foreverand ever, and I'm going through
a good patch.
It's the way I look at itbecause I know nothing is
permanent.
As I was saying, I could behomeless tomorrow, but right now
I'm a very happy guy.
And yes, I like me.
SPEAKER_00 (25:29):
What made you want to take your life and
everything?
And this podcast is always aboutturning uh pain into purpose.
What made you want to do thatand actually become an advocate
for this and help others?
SPEAKER_04 (25:45):
I don't know.
I don't know.
SPEAKER_00 (25:47):
It just happened?
SPEAKER_04 (25:49):
It was uh a drive.
Um, when I first started toresearch about FASD when I got
my diagnosis, up until thatpoint, I had ignored everything
about it because I'd had so manydiagnoses over the year, I had
an alphabet soup behind my nameof all these different diagnoses
that I supposedly had.
So this is just another one.
(26:10):
However, when I did get it, andafter um I was told it wasn't my
fault, I had to go figure outwhat it was.
And the stuff I saw online washorrifying.
They'll never uh be able to liveon their own, they'll be in
jail, they'll all be drugaddicts, the girls are loose,
and the guys are addicted, andblah, blah, blah, blah, blah.
(26:34):
And it wasn't only opinions.
I was seeing professionals whowere telling people, well,
there's not much you can do forthem.
Put them in an institution orgood housing, and that's about
that just it made me angrybecause I knew that was not a
(26:57):
reality that I had to do.
I had been a successfulphotographer for a national TV
network.
I'd done that for years.
I was able to hold a job, I wasable to have relationships, I
have two kids.
It did not represent me as aperson with FASD at all.
So um I have a hungry spirit.
(27:20):
I had to learn more and I had tolearn more.
And the more I learned, I beganto see how wrong that talk-down
view of us was.
And yeah, I had to speak out.
I started stomping around in myred shoes and saying, Hey, you
guys, it ain't so.
Luckily, um, Jody Culp in theStates saw that and she asked me
(27:43):
why I was doing this.
And I told her because, and sheliked it.
She thought that would besomething that people could, you
know, grab onto in their ownlives and take that movement,
that idea forward that we'rebeing misrepresented, that we
are fantastic people.
We have a lot of talents, a lotof stuff we think that we can go
(28:06):
and we change the world justeven by thinking differently.
Everyone in the box says, goleft.
We say, let's take a look atwhat's on the right, maybe.
Might see something different.
SPEAKER_00 (28:18):
Yeah.
Well, whenever I hear that Ican't, because they did tell me,
you know, you're not gonnagraduate high school, you know,
all these other things.
And I just had this spirit in methat said, Well, yes, I am.
You know, they said I wouldn'tbe able to hit a ball.
I got one or two home runs.
Uh, they said I wouldn't be ableto ride a bike.
I rode a unicycle and a parade.
(28:40):
I was determined.
I'm like, not a bike.
Okay, give me one wheel.
So that's just the way that Ioperate, and I still do today.
So what I do want to hearthough, more about I see the red
shoe behind you.
Tell me about red shoes rock.
SPEAKER_04 (29:00):
Um well, the red shoes, they were a personal
statement.
Um, when I started speakingpublicly, I took the armor of
the people who had always keptme down.
I put on a suit and a nice tieand everything like that.
(29:20):
But I put the red shoes onbecause I'm subversive as
because you know I was takingtheir power clothes and using it
for my own and keeping true tomyself.
Now, theoretically, if you dosomething wrong or something
that's not acceptable, you arethen given a nice healthy dose
(29:44):
of shame.
When I get shame, I look down.
I look down and I see those redshoes, and I know that is not
warranted.
I look up, I've got fire in myeyes.
Come on, guys, let's go.
And that's where theconversation.
Begins.
For me, it was something becauseI didn't have someone, a support
(30:06):
person or anyone like that.
I um largely with the help offriends, started, you know, I I
basically bankrolled my firstpublic speech myself.
I paid for it.
We got a church basement forfree kind of thing, and we
invited people and the placesold out.
It was amazing.
(30:27):
So just getting those shoes andhaving them wearing them with a
suit, which is still gets a lotof looks.
Like when you're in the downtownfinancial district, and all
these other guys are all dressedup.
And they look down and they seethese silly runners.
They're like, oh, one of them,huh?
Yeah.
The original.
SPEAKER_00 (30:48):
I love it.
I still wear my Converse all thetime.
That's just who I am.
Yeah, oh, for sure.
And the the Red Shoes is itreally represents who you are.
It represents your personalityand everything.
I love it.
SPEAKER_04 (31:06):
Let's go out and get them.
SPEAKER_00 (31:08):
Do you know how how big is Red Shoes um rocks?
I mean it's it's pretty big.
SPEAKER_04 (31:15):
It is definitely international.
Um it's huge in areas like uhAustralia and New Zealand.
Um we have a book.
Oh my god.
Do you know about about our thebook from Germany?
SPEAKER_03 (31:34):
No.
SPEAKER_00 (31:35):
I don't.
Okay.
SPEAKER_04 (31:36):
I have so many neat things going on.
SPEAKER_03 (31:39):
Oh my gosh.
SPEAKER_04 (31:40):
Okay.
Woman in Germany wrote this.
It's all about red shoes.
And it's called the Red Shoes ofthe Wandering Mouse.
Is it in is it in English?
Yes.
This is an English translation.
And it tells the story of amouse who uh found some red
(32:01):
shoes in the adventures of thismouse.
Now, what's really neat about itis it's not based on me
specifically.
Oh, I like that red shoesthough.
SPEAKER_02 (32:15):
Yes.
SPEAKER_04 (32:17):
But um the author did reach out to me.
Have you ever seen the thepicture of me hanging out of a
tree?
I think so.
I think so.
So did she.
SPEAKER_00 (32:29):
Oh my gosh.
So what is what is the name ofthe of the character in there?
What what is the name?
SPEAKER_04 (32:39):
It's a mouse and a hedgehog.
So um it's the wandering mouse.
The red shoes are.
SPEAKER_00 (32:46):
Does it have anything to do with FASD?
Oh, absolutely.
SPEAKER_04 (32:50):
In fact, a whole section on why red shoes, all
about me, and why I started.
SPEAKER_00 (32:59):
Oh my gosh, RJ, that is so amazing.
SPEAKER_04 (33:04):
And it even ends with a little picture of me in
there.
SPEAKER_00 (33:08):
Do you know what that picture of you reminds me
of?
SPEAKER_04 (33:11):
What's that?
SPEAKER_00 (33:13):
Oh, what were we called?
I don't know.
Our initial, our uh initialpodcast, if that's what you want
to call it.
Where and and you were SwissCheese Brain Effect?
The Swiss Cheese Brain Effect.
SPEAKER_04 (33:30):
Yes.
Or how I learned to live withFSD, I think, was roughly.
It had a super huge, long title.
SPEAKER_00 (33:40):
Yeah, it did, but it was super fun.
And you had that coat.
We used that like figure to goalong with our little uh
Facebook group that we had, andthen we started the Yeah.
I mean, I think that that's sofun.
Do you see how huge you are,what you've created, how huge
(34:01):
this movement is?
SPEAKER_04 (34:03):
Yeah, it's it's extremely humbling.
Um, I love what people have donewith it.
And um sometimes it's like, whois that guy?
Who did it?
It's just like, wow, that can'tbe me.
Sometimes I have to give my mymy head a shake and go, yeah, I
have some value in the world.
SPEAKER_00 (34:23):
Who knew?
Oh my.
You know, you were put here onthis planet for a reason, and
that's what I really want peoplewith FASD to understand is that
we were put here for a reason.
We have a purpose, and don'tever let a definition or a
(34:44):
diagnosis define who you are andmake you feel less than or that
you're not capable of.
Because look at us, we both havethat same diagnosis.
We were both told all thenegatives, but look at us, look
what we've been able toaccomplish.
(35:06):
I think that that's so amazing.
I am really proud of you and howfar that you've come, RJ.
SPEAKER_04 (35:14):
Right back at you, Mustang, Annie.
SPEAKER_00 (35:18):
See, see, that's that was yes.
See, we've always been reallygood together.
SPEAKER_04 (35:25):
Uh oh, you and your red Mustang, classic.
SPEAKER_00 (35:30):
Which because I am a soccer mom now, I have a soccer
van that seven people.
This is not me.
I refuse to identify as like anykind of a soccer mom driving a
(35:51):
van, but I am still MustangAnnie riding in this van.
I am still that person.
SPEAKER_04 (35:59):
Exactly.
Exactly.
SPEAKER_00 (36:02):
So, what do you want people to know about FASD?
Like, what what how can you helppeople who have FASD?
What do you want them to know,RJ?
It's not your fault.
SPEAKER_04 (36:24):
It's the creator gave us all individually
challenges, um, some more thanothers.
However, I also believe thatwith the challenges come gifts
that are unique, and it's takingus sometimes a while to find
them because they might behidden.
(36:47):
But when we're able to go withtalents and follow those roads,
and the gifts can becomeapparent.
So um yeah, it's not about thediagnosis, there's a whole lot
more going on, and you havegifts that at this point you
might not even be able toimagine, but just grow with it,
(37:10):
give it some time.
Brains develop at a differentpace for people with FASD.
So often we don't even hit ourstride until we're in our 40s.
SPEAKER_00 (37:22):
Oh, do you know?
That's really interesting thatyou say that because I feel more
capable now than I did when Iwas younger.
I watch what other people I justfeel like I have just become me
and able to do the things that Ishould have been doing in my 30s
(37:42):
and 40s that I was not able todo.
And now I can do them.
It's so crazy.
SPEAKER_04 (37:50):
Yeah, that's because um the assumption is by the time
you're 30 or neurotypical, yourbrain-building functional days
are pretty well over.
We're still building brain cellswell into our late 40s,
apparently, because the humanbody, the creator is amazing.
(38:12):
Um, our brains are what we callneuroplastic, plastic meaning
malleable.
So it's often trying to, youknow, fix things, as you were
talking about earlier.
The brain can do an amazing jobjust on its own, trying to make
things work.
Yeah, we found that thetrajectory for people with FASD
(38:34):
is a lot longer.
There's actually a catch-upperiod that has been identified
between 30 and 40.
It's a brain process calledmyelination.
Now, imagine um our thoughtprocesses as gravel roads.
We think a little slowly, ourprocessing's a little slow.
So you got this gravel road, youhave another gravel road,
(38:56):
another thought process, anotherthought process.
What happens with myelination isit's like almost the insulation
on a cable grows around thesedifferent synapses, binds them
together almost like asuperhighway.
And when that happens, there's afatty subsubstance called myelin
that's built into this.
(39:18):
It speeds up the transmission ofthoughts.
It's a catch-up period.
Our thinking gets clearer, we'rebetter able to do things and put
things together.
And that generally seems to behappening between 30 and 40.
Now we need a lot more researchon it.
There's only been minimal workdone on it, but I'm very excited
about that because I see itconstantly with the people I
(39:40):
work with daily, that um at acertain point, suddenly things
are all starting to click.
SPEAKER_00 (39:48):
How do you well, first off, I want to say this.
When I was a kid, I um reallywasn't able to put sentences
together very well.
And now I'm doing a podcast.
It took decades for me to beable to do this.
I mean, I still have helps withsome notes and things like that
(40:09):
that I keep in front of me whenI interview people, but you
know, I never was able to putsentences, paragraphs, and be
able to communicate.
I used to write notes to peopleand give it to them when I was
younger, even in my 20s.
And I know that people thoughtthat I was really strange, but
(40:32):
if I really wanted to saysomething and be able to convey
it in a way that made sense, andand the way I really wanted to
say it, I needed to write itdown and give it to them.
Because I trusted that.
But and I knew I couldn't trustmy own mouth to for it to say
what I really wanted to.
(40:54):
But now I'm much better at it.
It it took that many years formy brain to develop that part of
the brain for me to be able todo it.
SPEAKER_04 (41:05):
Yet you were able to write.
And now, here's the flip side ofthat coin.
It wasn't until I met you and westarted discussing these things,
and I started to understand thatI could write like I talk.
Because I've always been able totalk.
Yeah, even till that point,whenever I tried to write, I was
pretending to be somebody else.
(41:25):
It wasn't authentic, it felt Icouldn't even stand it.
I even to this day, I cannotstand reading my old writing
because I was trying to besomebody else.
But through our conversationsand everything, I learned from
you that it's possible to justtalk and use that.
(41:50):
And that changed everythingbecause now I'm able to talk out
what I want to say and I writeit down.
Yeah, just be like the flip sideof what you're talking about.
SPEAKER_00 (42:05):
Mm-hmm.
SPEAKER_04 (42:06):
That's kind of cool.
SPEAKER_00 (42:08):
Well, I think that we were meant to meet.
SPEAKER_02 (42:12):
Absolutely.
SPEAKER_00 (42:14):
Because I think that we both helped each other get to
where we are today, you know,long years ago, but we we really
believed in each other.
And I think that we still reallybelieve in each other, and we
will always be each other'scheerleaders.
I I'm always like going on andwatching everything that you're
(42:35):
doing, and I just am so proud ofeverything that you're doing
because I know where you were,and I know where you are.
I what how many crowds?
I mean, like, how often do youspeak?
Like, what are the crowd sizesthat you speak in front of?
SPEAKER_04 (42:54):
Oh, I actually tend to like to accept a lot of
smaller and medium-sizedinformants or less.
Um, um I love doing like a classsize, sometimes 20 or 30.
Those are those are great.
They're they're veryinteractive.
But you know, I I can also talkto a thousand people at the same
(43:15):
time.
So for me, the crowd size isn'tso much the big thing as being
able to get in intimacy with thecrowd.
Um the the first thing I I telleveryone is number one, if you
got it, give me a wireless mic.
Number two, I'm gonna go awayfrom the podium.
(43:36):
And then I'm going to walk tothe audience.
If it's a riser or something, Ican walk into the audience.
If I have to go down the stairsand decide that's distracting, I
can't do it.
So a lot of it is dependent onwhere I am and how it's set up.
But um, for me, I don't want theprosemium arch, that arch on the
(44:01):
stage, to be a separator.
Because I don't want to beseparate from the people I'm
talking to.
If possible, I want to have themaround so we can have a circle
of patients.
So for me, uh crowd size isn't abig thing, and I'm lucky that
way because I know a lot ofpeople suffer.
And uh, you also have toremember, I also did a stint on
(44:24):
stage as a drummer when I wasyounger.
So that's true.
Um sort of on stage and not evenseeing the audience sometimes.
SPEAKER_00 (44:34):
Yes, yeah.
And that's uh, you know, I findit really interesting that we
use our voice, and and you know,because it was so difficult for
us at in parts of our lives tobe able to use our voice, and I
so I love that that's such um apowerful way that we're using it
today.
Do you consider yourself a lifecoach?
(44:54):
Is that what you do?
Do you work one-on-one withpeople at all?
SPEAKER_04 (44:58):
Um, I have mentored people over the years, okay, but
I don't coach.
Coaching is short term, and whenI take someone on, it's often
for years.
And um yeah, I have a number ofpeople who through the years I
have mentored who have gone on,but we're still in constant
(45:21):
contact because I do not wantthem to feel that support is
suddenly cut off.
The problem with dealing with alot of professionals is that
they'll be there for you oneday, but then they get another
job in another department andthey're gone.
And that personal lost.
So for me, anyone that I do workwith, which I try to keep to a
(45:42):
minimum, obviously, because ofall my other work, it becomes a
years-long project at thatpoint.
I don't just, you know, letpeople go.
And when they're ready to moveon to, you know, other supports
and things like that, that'stheir decision.
SPEAKER_00 (45:58):
Mm-hmm.
That's really awesome.
Um, that you do that.
Um again, there's no limit towhat you're doing.
How can families and individualsstart advocating in their own
communities?
SPEAKER_04 (46:16):
Oh, um, it starts with speaking your own truth,
your own experience on how yousee things.
Uh there are a lot of um FASDgroups, especially around
September, September 9th beingInternational FASD Day, and just
going out to an event andtalking to the people running
(46:37):
the little booths andeverything.
And you can get incredibleconversations, you can find out
incredible information, and youcan also probably start
impressing the organizers whenthey see someone who's
interested.
And then if you have, you know,a story to tell or whatever,
that can work into us.
So often it it starts with umsupport groups that do public
(47:02):
outreach and public events.
SPEAKER_00 (47:04):
Okay.
Well, we need more of those inthe United States.
We just really don't have them.
SPEAKER_04 (47:10):
I I that's the thing that really thrills me the most
um at this previous conference Iwas at.
There were like 110 people withFASD who were there.
Advocates, people who work inthe system, people, parents, and
things like that.
It was incredible to see thisgiant wall of advocacy.
(47:32):
And yeah, I feel really goodwhen I see all these people
coming up behind because it waspretty lonely for a long time.
There were only a few of us whowere out there stomping around,
going to stage the stage.
And the most amazing thing aboutthis, all this advocacy, and
it's not a competitive arena.
(47:54):
It's not about who's the bestwho got more people or whatever.
We help each other.
And I've never worked anywherewhere we're not competing with
each other.
We're all going for the samecause, and that's you know, to
get the proper right informationout there so we can help people.
SPEAKER_00 (48:13):
So we know a lot more now than we did, would you
say?
I mean, is there an impact,would you say, with all the work
that you're doing?
SPEAKER_04 (48:21):
Oh, absolutely, absolutely.
It's even um how many peoplehave never even discussed the
possibility with their or evenwith their physician?
Uh one of the big problems thatwe have are physicians who are
not trained.
And then even worse, we havephysicians who are not trained
but think they are.
(48:42):
So yeah, there's there's still along way to go, and we have a
lot of work to do, but changingsystems takes time, and you
know, we're we're not goinganywhere.
We got all the time in the worldto do it, dude.
SPEAKER_00 (48:57):
Yeah.
Well, I mean, in the indigenouspopulation, there is a lot of
FASD, is it not?
I mean, and and I don't knowwhere that stemmed from, or
maybe that's just a myth.
I'm not really sure.
Is that a myth?
SPEAKER_04 (49:15):
That actually is uh a horrible stigma.
SPEAKER_00 (49:19):
Okay.
SPEAKER_04 (49:20):
Um it's more based on the fact that our population
size is so small.
unknown (49:27):
Okay.
SPEAKER_04 (49:28):
It's not that we're necessarily affected to a
greater degree, it's just thatum historically people from the
dominant society were getting umum um autism diagnoses for the
same thing and stuff like that.
There was a lot of that becauseobviously there's a factor with
(49:53):
an FASD diagnosis a lot ofpeople didn't want to deal with.
So, but in the native community,it was seen for what it was
because the introduction ofalcohol has just been within the
last 500 years.
We're better able to gauge that.
Europeans grew up with it, it'sbeen generational.
(50:15):
We rarely had you know a fewfermented fermented berries or
something in the fall would beour alcohol exposure.
So, and because of that, we'relike the canary in the coal
mine, and the research wasinitially done on native people.
(50:35):
So the story started to be it'sa native people problem, but
we've since found that itcrosses all societal barriers,
it crosses all financialbarriers.
FASD is real and it affectseveryone, every group.
SPEAKER_00 (50:51):
Yeah, yeah, it really does.
SPEAKER_04 (50:53):
Now there are the exceptions, um, say like Amish
and other groups thathistorically do not partake in
alcohol.
However, kids are kids, andthings do happen, and no
particular group can say there'sno FASD.
I've heard groups say that, andlike no, human beings are human
(51:13):
beings, they're gonnaexperiment, things are gonna
happen.
SPEAKER_00 (51:17):
And it's it's so much wider than we could ever
put a number on.
I mean, the statistics that Iput out there at the beginning,
you know, I I really think thatthat's just probably a very
small percentage of what isreally there.
SPEAKER_04 (51:30):
Mm-hmm.
Oh, yeah.
Um I would think that one daywe're gonna be looking at 25%,
either FASD or fetal alcoholaffected.
SPEAKER_00 (51:44):
Right.
Okay.
SPEAKER_04 (51:45):
Because even if like my kids don't have FASD,
however, genetically, due tosome of the changes in me,
that's gonna be carried onthrough them.
SPEAKER_00 (51:56):
Okay.
Is that what that means?
SPEAKER_04 (51:58):
Yeah, we don't have a lot of real research into that
now, and they're they're lookinginto it in like the epigenetics,
not so much that the geneschange, but how they express
themselves, how they fire offwhen and where.
That can change due to alcoholexposure in the parent.
SPEAKER_00 (52:17):
Okay, so the parent has it, and so then they nobody
drank, but they do have effectsbecause the parent had it.
SPEAKER_04 (52:27):
Some can, and research is indicating it's
possible.
SPEAKER_00 (52:32):
That would be the genetic piece, right?
I mean, I would think that therewould be some genes that would
be passed down.
SPEAKER_04 (52:38):
There is an intergenerational effect, even
if there is no alcohol directlyindicated, it can come from
previous generations.
So I'm saying it's going to endup being 25% or more because all
of these generations backcausing genetic effects that we
don't yet understand, and oneday we will.
SPEAKER_00 (53:01):
You know, this has been such a great conversation.
I have so loved having you on.
I mean, it just I want to dothis again.
I mean, I think that for one,for one thing, we're really good
together.
For another thing, you know, Ijust don't think that, like I
(53:22):
said at the beginning, I justdon't think people really
understand what this is.
And you are such an amazingmouthpiece.
So, how can they contact you?
Red shoes rock, flying withbroken wings, and all the stuff.
SPEAKER_04 (53:42):
Yep, that's it.
I'm everywhere.
It's it's easy to find me.
Best place, of course, is onFacebook because I monitor, I
run the group, and I'm in likean active admin.
So if you can message me onFacebook, that's usually the
quickest way.
My email is out everywhere,mrstartpointrod at gmail.com.
Um, I'm easy to get a hold of ifyou're looking for me.
(54:05):
And it if it gets reallydifficult, find someone that
knows me.
They'll send you to me.
It's easy.
SPEAKER_00 (54:13):
Yeah, they can find me.
I can send them to you.
Everybody does know RJ, or Icould say Rod.
SPEAKER_04 (54:22):
Absolutely.
You absolutely could.
SPEAKER_00 (54:25):
Because I know what RJ stands for.
SPEAKER_04 (54:27):
So do I.
SPEAKER_00 (54:28):
Any more information about FASD before I close?
Anything else you want to say?
SPEAKER_04 (54:34):
Tomorrow's another day.
Tomorrow is always another day.
No matter how hard it getstoday, tomorrow is another day.
SPEAKER_00 (54:45):
My thing is look at you.
Look at RJ Formanac.
Look at what he's accomplishing.
I will get off of here today andI will go talk to my kids, and I
will show them parts of this,and I will hopefully someday you
can meet my kids, you know, overZoom or something, especially my
(55:09):
one son.
I really want him to meet youbecause I want him to see look
at you, look at what you'veaccomplished, look how look how
successful you are.
I don't want shame and trauma todefine anybody that has FASD.
(55:30):
I think that that's one of mybiggest messages.
And that you can't.
Yeah.
And that you can.
You can.
Don't let anybody tell you thatyou can't.
We might just need a little bitmore time to do it.
We might just need a little bitmore processing time.
We might be able to just, youknow, we might forget and then
(55:52):
have to relearn it.
But you know what?
We can.
unknown (55:57):
Yeah.
SPEAKER_04 (55:58):
All we're asking for is the chance, and we're gonna
knock your socks off.
SPEAKER_00 (56:03):
Well, RJ, thank you so much for being here today and
for all that you do.
You have given so many people,myself included, language,
community, and hope for ourlisteners.
If you or someone you love isliving with FASD, please know
that you are not alone.
(56:24):
There's a whole community outthere walking this same path.
You can find RJ, like we said,on Flying with Broken Wings on
Facebook and through Red ShoesRock, both incredible spaces for
awareness, support, andconnection.
And as always, thank you forlistening to Real Talk with Tina
and Anne.
You know, hit the like button,subscribe, go to the website,
(56:46):
and on our website, you know,you will find a lot of really
amazing things because webelieve that our differences
aren't deficits.
They are the wings that help usfly.
So thank you, RJ, for being ontoday.
I love you, brother.
SPEAKER_04 (57:04):
I love you.
It's been a pleasure.
Let's do it again.
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