November 12, 2025 • 59 mins
We share real, lived experiences from someone navigating life with FASD: the diagnosis, the data, and the dignity that often get lost in the conversation. Together, we unpack the daily struggles and the deep relief that comes from hearing the words, “It’s not your fault.”
What follows is a powerful journey from shame to self-forgiveness, as we explore person-first support, resilience, and practical tools that empower families, educators, and communities to truly understand and uplift those living with FASD.
• global and national prevalence of FASD and underdiagnosis
• RJ’s childhood, system involvement, and late diagnosis
• shame, stigma, and the power of “it’s not your fault”
• behavior as symptom, not choice, in school settings
• person-first frameworks and lived-experience leadership
• memory, executive function, and “manual transmission” brains
• routines, morning ramp-up time, and no-homework advocacy
• how to explain FASD to children in age-appropriate steps
• dismaturity across brain domains and realistic expectations
• caregiver challenges, resilience, and community support
You won't want to miss it. Until then, remember understanding creates connection, and connection creates change.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_03 (00:08):
Welcome to Real Talk with Tina and Ann.
I am Anne, and today's episodeis deeply personal to me.
Today we have RJ Formack, and weare talking about a condition
that deeply affects millions ofpeople around the world, yet, so
many people still do not fullyunderstand it.
If you want to understand thelife of a person who has had to
(00:29):
live and overcome aneurodivergence that affects up
to one in 20 United Statesschool-age children, according
to the CDC.
And according to the Center forAddiction and Mental Health, in
2024, 119,000 children are bornevery year who have FASD,
otherwise known as fetal alcoholspectrum disorder.
(00:49):
And the global prevalence ofFASD is approximately 7.7 per
1,000 in the general population,with rates potentially as high
as 30% in high-risk populations.
These numbers highlight theimpact alcohol consumption has
during pregnancy on fetaldevelopment.
Individuals affected by thishave a lifetime of difficulties.
(01:12):
And I think many will be shockedto hear these numbers.
But first, I just want to say toyou, RJ, brother from Another
Mother, the founder of Flyingwith Broken Wings, an online
support and awareness community,and co-creator of Red Shoes
Rock, a global movement thatbrings visibility and
(01:35):
understanding to those who livewith FASD.
RJ, I am so glad to have you ontoday.
I am just thrilled.
SPEAKER_00 (01:44):
It's always a pleasure to speak with you, and
we go back uh a few years now,and uh we've been on this
journey separately together, butalways keeping in touch.
And I think that's fantastic.
I love what you're doing.
You you're really changing theworld for a lot of people.
Great job.
SPEAKER_03 (02:01):
Well, you are as well.
I mean, I am so proud of you.
I'm so proud of us, actually.
You know, I mean, look at wherewe started, and I was trying to
figure out how long it's been.
I mean, it's been almostprobably a couple decades.
I don't even know how long hasit been.
SPEAKER_00 (02:19):
At least 15 years.
SPEAKER_03 (02:21):
At least.
That's what I was thinking.
SPEAKER_00 (02:23):
I'm terrible with with time.
So let's say 15 and maybe alittle bit more.
SPEAKER_03 (02:29):
Yeah.
I was thinking the same thing.
It goes back to when you and mewere both, we we knew that we
had been diagnosed with FASD.
And Jeff Noble brought ustogether and we started doing
shows kind of like this, but itwas it was the early stages of
streaming services, and we had acall in show, and the two of us,
(02:53):
we started this little Facebookgroup outside of your very
successful Flying with BrokenWings.
And it was super fun.
I mean, I think that it was thebeginning for both of us.
It sparked our voice uh in thisway.
SPEAKER_00 (03:06):
Oh, definitely, definitely.
Um, we experimented, we trieddifferent things, and uh we we
had like what two seasons of ourof our podcast.
It was an audio-only podcast,obviously.
And uh we had no boundaries.
I remember there were a coupleof times we both came off and we
were both totally shell-shockedand just just totally wiped out.
(03:31):
But we were reaching peoplewho'd never heard what we were
talking about, and people whowere living with it that didn't
know.
It's amazing the number ofpeople who will listen to an
advocate and start puttingthings together and then start
seeking their own diagnosis.
Those numbers are amazing.
SPEAKER_03 (03:48):
Yeah, they really are.
We did talk about the numbers inthe United States, but you're in
Canada.
So where what are the numbers inCanada?
SPEAKER_00 (03:57):
Well, um, the official numbers are um at about
four percent.
SPEAKER_03 (04:03):
Okay.
Yeah, I knew it was higher.
Yeah.
But part of the reason why it'shar higher, too, is because you
guys are just so far ahead ofus.
SPEAKER_00 (04:13):
Our diagnostics are catching a lot more.
So our numbers and ourprevalence are starting to rise.
I personally think it'll go alot higher than that.
And um, there are many peopleour age who are who have FASD
who don't know it.
Because um 100%.
Well, I was 47 when I wasdiagnosed, and I was the first
(04:36):
person in this part of Canada tobe successfully diagnosed as an
adult.
I'm 64 now.
That's not that long ago.
So it's only been in that amountof time that we're starting to
catch the ones who aren't kidsnow.
Because as he was saying, thisis lifelong.
A lot of people think it's likea life sentence.
I think it's an adventure.
(04:57):
Yeah.
I have I have an attitude aboutit.
Um, even though I was diagnosedlate, I had to fight for my own
autonomy in life.
Yeah, I was the weird one.
I was the one who was alwaysdoing crazy kind of stuff all
the time, and the one who wenttoo far and said too much and
(05:18):
laughed at uh at things thatweren't funny, just totally
inappropriate, but I was real.
And despite the fact thateveryone kept telling me I was
wrong, I couldn't change who Iwas, so I had to accept that.
And I grew up knowing that,yeah, I'm a weirdo.
If you don't like it, too bad.
SPEAKER_03 (05:40):
I like the 100%, and I love you, and you are perfect
just the way you are, and youalways have been.
As long as I've known you,you're a really special, a
really special guy.
And I have three kids who haveFASD, and they are all amazing
(06:02):
kids.
So yeah, it the one thing aboutit is that, you know, sure we
want to get out there and wewant to do the fight, you know.
Tell people we just had uh wejust came out of September and
it was uh the set the ninthmonth, the ninth day, you know,
it represents not drinking fornine months.
(06:23):
And we want to get thosemessages out there 100%, but
we're here, you know, we'realready here.
And and that's also the othermessage that we want to get out
there is that, you know, there'sa lot of us that are here that
are already born with FASD.
And so, you know, we're we'resome of us are grown up, some of
(06:44):
us are still young kids, and wewant to be able to get that
message out in who we are.
And um, first of all, you know,I wanted to ask you, RJ, who is
RJ?
I mean, what was your life likegrowing up?
SPEAKER_00 (06:59):
Um RJ.
Oh, he's just some guy.
Um I followed the classic nohope trajectory.
Okay, first off, I'm FirstNations, I'm native, um, what
you would refer to as Indian inthe United States.
When I was born, my mother gaveme up at birth.
(07:23):
Um, she I was she was unwed, Iwasn't expected, it was 1961.
Life was a lot more judgmentalin those days, and uh she
thought, okay, well, I'll justyou know forget about this and
learn nothing.
Um her mother, my grandmother,did not like that idea at all,
(07:44):
and she stepped in and took me.
There's no adoption going onhere, we're taking this kid
home.
So I ended up being raised by mygrandmother, and that went fine,
but they kept trying to reuniteme with my mother.
She would get stable for awhile.
She had um a problem with umalcohol consumption, and that
was um a weakness of hers.
(08:06):
And she would go throughrelationships, she would um seem
stable for a while, I would getsent to live with her,
everything would crash, andthere'd be fights and kinds of
stuff like that, and then Iwould go back to my grandmother
for a little while, but I'mcoming back to my grandmother
every time with all theseexperiences, very, very negative
experiences.
(08:27):
Um, so eventually, when I was 12years old, I sort of was just
too much for my at that point.
My grandmother was my age, 65,roughly, and uh my grandfather
was in his mid to late 70s.
Okay, they couldn't handle ateenager at that point who was
(08:49):
super rambunctious, who hadADHD, was bouncing off the
walls, 100 miles an hour all thetime.
Yeah, yeah, and frustrated andangry.
One of the things that reallyfrustrated me as a kid was I was
always getting in trouble for umbeing non-compliant, let's say.
I would ask why.
(09:10):
Someone would say, go dosomething.
And I would innocently, justwanting to know why the
reasoning was, because I wascurious.
I'd ask why.
And that would end up with uhincentive to be compliant, let's
say what it was in those days.
So yeah, by the time I was 14, Iwas in trouble with the law.
(09:32):
I ended up being removed from mygrandmother's by the courts and
uh went into the foster caresystem.
Well, you know, I didn't fostervery well, and uh I went through
13 foster placements in 12months.
At which point they gave up onme, went back to the court, had
(09:53):
me emancipated as an adult, andthen I was placed into an adult
group home.
If I screwed up there, I wasgoing to jail.
SPEAKER_03 (10:01):
How old were you then?
SPEAKER_00 (10:02):
I was at this time 15.
SPEAKER_03 (10:05):
Okay.
SPEAKER_00 (10:06):
And I had been emancipated as an adult.
I thought it was really cool.
I didn't realize that, you know,then I could be charged for
anything as an adult.
SPEAKER_03 (10:17):
Yeah, that's pretty scary.
What kind of behaviors are youtalking about that caused you to
go through the system like that?
SPEAKER_00 (10:23):
In particular, I broke into a house and
vandalized it.
I stole I stole a truck anddrove it around for a while,
just dry riding and damaged it alittle bit because kids are kind
of going.
I didn't drive that well.
So I bumped it a few times.
Um, but I brought it back towhere I got it from, and um I
(10:46):
ended up getting caught becauseI had left um a shoe print in
paint.
Now, the one thing nobody knowsis I had met a girl, but she
lived long distance away fromme, and I needed to contact her.
I couldn't use my phone becauseit was a secret, and these
(11:08):
people were on vacation.
So I went in to make along-distance phone call, and
then to cover my tracks, I madea mess.
So, in your brain, I could nevertell anyone that part, and I
ended up with five yearsprobation out of the whole
thing.
(11:29):
And then I was thrown into themental health system because
they thought I was nuts becausethey couldn't understand why I'd
done this, and I I was tooembarrassed by the fact that it
was more about raging teenagehormones to tell them that it
was about making a phone call,not about wrecking somebody's
house out of anger.
(11:51):
So that was subtrafuged and itgot me in way more trouble.
I learned very quickly, I just,you know, I deal better with the
truth.
It's better not to try and besneaky for me.
So yeah.
And I ended up in a group homewith a woman who years before
there was even a term for fetalalcohol spectrum disorder,
(12:13):
seemed to understand at leastneurodivergence.
When I first moved in, the firstsix weeks, I sat in my bed
alone.
We had a ward, so there was likefive guys there, but I had my
own bed.
It was my own space.
Nobody else would touch it,theoretically.
And you know, it was mine, andthat's the only place I wanted
(12:35):
to be.
She would let me take my mealsup there, like I had to come
down and get it, obviously.
It was upstairs of her house,and she'd let me acclimatize up
until that point.
It had been 12 months of hi,this is your new family.
Get out of here.
Hi, this is your new family.
We don't want you.
And so I was so defensive.
(12:56):
So it took me about six weeksuntil I finally came down to eat
with the family.
SPEAKER_02 (13:01):
Wow.
SPEAKER_00 (13:02):
That was the way she approached me the whole time.
She allowed me to be me.
She gave me autonomy, and thatin itself was such a learning
experience.
What ended up happening was atthe age of 18, I aged out.
So my um childhood supportpayments and everything stopped.
She let me stay there with oddjobs and trying to pay the rent
(13:26):
with a little bit here andthere, but she she let me stay
there until I was 23.
Wow.
And for me, that made all thedifference.
Between 18 and 23, my brainstarted figuring out that um,
yeah, okay, you have to figureout what you're gonna do with
your life.
Yeah.
And then I knew what I had tofigure out was um, what can I
(13:49):
do?
I know my personality, I knowthat I'm clear there, I'm
everywhere, I'm a million milesan hour, and I can't do a
sit-down job.
I cannot.
So I looked for where my talentswere, and those are in the more
artistic realm, and I end upgoing into television, and the
rest is all history.
SPEAKER_03 (14:10):
Isn't that interesting that we both went
into media?
I think that's reallyinteresting, us two FASD people.
SPEAKER_00 (14:18):
Um people with FASD often see things in a way I'm
I'm working on uh on a projectright now, or I'm gonna explore
that people with FASD lead withtheir hearts.
We do everything with thatemotion built in.
It's not separate.
(14:39):
If we're excited and on yourteam, we're pushing, we're ready
to go, we're like racehorses.
100%.
And you know, if we're mad,we're really mad.
We we feel it in our hearts,it's not just in our heads, we
feel it.
So people with FASD are weintegrate that emotion into our
(15:00):
daily life.
And I think this is what a lotof people see in us that they
find attractive is that we canspeak with emotion that we can
feel in that moment.
And we often live in the moment,and that can be either good or
bad depending on the moment.
Yeah, but uh yeah, FASD isfascinating to me.
(15:23):
And learning how my brain worksand finally understanding that
just it was something I had toshare.
SPEAKER_03 (15:30):
You know, that's really interesting that
realizing what your brain waslike with FASD.
I don't know.
I mean, it took me a lot ofyears to get to that point for
me to really understand.
I mean, I was a screw up.
If you would have looked in thedictionary under screw up, there
I was.
I mean, I couldn't figure itout.
(15:54):
And everybody else around me inthe classroom, you know, they
were all just sitting theretaking notes.
They were doing their stuff.
I was watching them to figureout what I was supposed to do.
I always felt like it was 10steps behind everybody.
What I was legitimately tryingto keep up.
I wasn't purposely trying to dosomething wrong.
(16:14):
And I even had a teacher say tome, you know, um, Ann, why are
you the only one in theclassroom that that's not doing
what they're supposed to bedoing?
And my only answer was, I don'tknow.
Uh, and I really didn't know.
And I and because my heartwanted to do what was right.
And I look at my son, who it'sthe same thing.
(16:36):
I mean, he's in trouble all thetime, unfortunately, and and
we're doing everything that wecan to help him.
And he is upset that he can'tmake the right choices.
And I think figuring out theFASD brain is huge for us to
understand why we do the thingsthat we do, even when we're not
trying to.
I mean, that's that's huge.
SPEAKER_00 (16:57):
And uh, what a lot of people don't understand is
for someone like you or me, inthose quiet moments, just as
we're drifting off to sleep, wefeel shame.
SPEAKER_02 (17:09):
Yeah.
SPEAKER_00 (17:10):
Because of the way we are, and that's unfortunate.
However, because we don't wantto be that way.
Um one of the most pivotalmoments for me was when I got my
diagnosis.
The diagnostician sat me downand she said, Okay, I want you
to understand one thing it's notyour fault.
(17:33):
See, oh see, those are beautifulwords.
Nobody ever said that to mebefore.
It broke me.
It still does, because thatfreed me to forgive myself
because I was owning all thethings that I did, and I know
you probably felt that too.
I did that regardless, good,bad, or whatever, I did it.
(17:57):
I did it, and I feltresponsible, whether it was
circumstances or whatever, andfinally I understood that my
brain was conspiring against me,putting out obstacles that I
didn't know were there, and thatyou know, it wasn't my fault I
was this way.
So that was that was such afreeing moment for me.
(18:20):
Oh, yeah.
See, I still get emotional aboutit.
SPEAKER_03 (18:23):
Because this is so deep.
And we're legitimately reallygood people.
My son is probably one of themost beautiful souls ever.
And I am gonna cry because uh hejust went through uh all this
testing at a hospital in ourarea.
(18:45):
And we really, you know, it'sinteresting that you guys are so
far ahead of us, but one of ourbiggest hospitals in the United
States just started for kids, anFASD clinic just started.
And my kids were one of the top,they they were three of the top
(19:07):
ones that they wanted to lookat.
So my one son went in and he hadalmost about eight hours of
testing.
And it was, you know, from facemeasurement and like all this
other stuff that they did.
And of course he came outcompletely having FASD.
(19:28):
And I already knew that he wasgoing to, and it's a spectrum.
Everybody falls within thespectrum somewhere, and um, he
unfortunately has real wasreally hit hard by it.
And I just, you know, it itmakes me weep too.
It makes me cry because he, likeI said, has such a beautiful
(19:49):
soul.
And he in no way, he wants toplease.
He wants to please.
But he comes home from schoolwith really low behavior grades.
He's in a behavioral schoolbecause he's not able to really
academically even keep up.
So, you know, we're just, youknow, we just try to work with
the academics or I mean with thebehaviors.
(20:12):
And he just feels like he he'sfalling short every single day.
He just is falling short in hiseyes every single day.
And it's just so sad.
SPEAKER_00 (20:22):
Yeah, yeah, yeah.
Um, I I think he could help theschool by having them address um
what you're seeing is symptoms.
SPEAKER_02 (20:33):
Yeah.
SPEAKER_00 (20:34):
They're symptoms of what's going on in his brain.
It's a clue, it's a place tostart.
SPEAKER_03 (20:40):
So did you go through school?
Did you go through the regulartraditional route, like you
know, first through twelfthgrade, and you just went in
regular classrooms?
Yeah.
Okay.
SPEAKER_00 (20:57):
I was all I was always screw up, except in the
English and history, and yeah,pretty well English and history
were my two really, really I hadincredible strength.
Everywhere else I was a totalscrew up, class clown,
disruptive, because I, you know,if I didn't understand what was
going on, I started to make somenoise kind of thing.
(21:19):
I, you know.
SPEAKER_03 (21:20):
See, and that's what I say about my son and also
about me in school, is if, youknow, if you put somebody, even
the smartest, you know, whateverit is, they and you put them in
a rocket science classroom,they're gonna be acting up, you
know, because you're speaking adifferent language.
You're not reaching them wherethey are.
(21:40):
If you're teaching way abovewhere somebody is, then you're
not gonna be able to reach them.
And of course you're gonna seebehaviors.
SPEAKER_00 (21:48):
Exactly, exactly.
But you know, at that time thereweren't even like special ed
classes, there's no such thingas no, no, it was just you get
sent to the office.
I spent most of my school yearssitting in the hallway outside
the office waiting for theprincipal.
Back in those days, they stillhad the strap.
(22:09):
I experienced that more thanonce too.
Oh, I was paddled.
Because the the assumption usedto be um you curb behaviors uh
by by physical force.
The kid will remember not to dothat again.
Well, it doesn't work when thekid does why they're getting in
trouble in the first place.
SPEAKER_03 (22:31):
And that's one of the things that the FASD people
at the hospital explained to meis that with the testing that
they found out with him is thatthe cause and effect isn't
there.
The ability to see, I did thisand this happened.
And for it to re for him toremember that even into the next
day is just too hard.
SPEAKER_00 (22:53):
So yes, completely.
Um like if you want to address asymptom, what they call a
behavior, you need to do it inthat moment.
Because if you do it later,that's no longer in our memory.
Like I have short-term andworking memory issues, which
(23:14):
means an hour, two hours later,I don't remember.
I just um was the MC at aninternational conference for two
and a half days.
I was on stage running aroundeverything.
When I came home, I couldn'ttell anyone what happened
because I didn't remember.
It's coming back two weeks laternow.
I'm because my long-term memoryis sound.
(23:37):
But knowing that I have thedeficits in working and short
term, they're both different butrelated.
I'm able to, you know, forgivemyself for not remembering today
what I will remember in twoweeks.
SPEAKER_03 (23:53):
Yeah, and I'm the same way.
I mean, I have to uh if somebodyasks me direct questions and
says, Oh, did this happen?
I could say yes or no, and thenI can start pulling it out of
me.
But for me to just sit there andyou say, How does it, how did it
go?
Tell me all about it.
Uh yeah.
(24:14):
Yeah, I would appreciate thehelp in helping me get it out.
And that's another thing isknowing how to speak the
language of somebody who hasfetal alcohol.
You know, you have to know theperson, you have to know how to
be able to have communicationwith them.
So you can help them be theirbest self.
SPEAKER_00 (24:34):
In Canada, we've made great strides with what we
call the person first strategy.
Okay.
So um, like CAN FAST, which isthe umbrella organization for
education in in in Canada, haslargely um embraced that because
that's giving the people withexperience voices.
(24:56):
And you can be the bestresearcher, but I'm the owner
operator.
You can see how I operate thisbrain, but you don't do it.
I do.
So only I can tell you what'sactually going on.
And in my head, we can'tvisually see brain changes
except with a few very extremetests, like a functional MRI,
(25:20):
which is like hours long and canbe really hard for someone with,
say, ADHD.
So they have started to realizethat we're telling the truth
about what's going on in ourheads, and they're they're being
being able to utilize that.
So our strategies now are allfirst thing called person first.
(25:41):
It's about the person, not theFASD.
It's the person who's livingwith it that's important.
And we address the person first.
SPEAKER_03 (25:51):
Yeah.
unknown (25:52):
Yeah.
SPEAKER_03 (25:52):
I mean, I think that we try to do that in the United
States.
I mean, uh, even the vocabularythat we use is different than it
used to be, you know, even withum autism, instead of saying
autistic, you know, there arepeople with autism or however
you want to say it, you know, ifyou want to put the person
first.
And I think that that's reallyimportant.
When I used to work at thatschool that you know of for kids
(26:16):
with autism, it was the samething where we put the child
first.
And if you do put the childfirst, then you're going to be
able to maybe meet them wherethey are better.
Because this is not just ablanket diagnosis where every
single person you're going totreat them exactly the same just
because they have something.
So, you know, we have toremember that they are people
(26:37):
first and they have feelings andthey care.
And just because they're doingsomething or they have something
doesn't mean that they aren'tdoing their best.
You know, I mean, they mightactually be doing their best,
even though their best is a lotdifferent than what you think it
should be.
SPEAKER_00 (26:55):
Exactly, exactly.
So um, having that understandingpermeating into the medical, uh,
the mental health areas, as wellas at the as the um general um
social workers.
I have a keynote coming up atthe end of November with the uh
(27:15):
Indigenous chiefs of Ontario.
So they um oversee the entirenative education system.
And I'm going there to speakabout the um neurodivergence and
the um, in in my particularcase, the convergence of FASD,
ADHD, and other symptoms thatand how educators can best
(27:37):
support students so they canunderstand how to help them,
help themselves.
SPEAKER_03 (27:43):
Do you have any key points here?
SPEAKER_00 (27:47):
I'm still working on that one.
SPEAKER_03 (27:49):
I want to ask you a question.
Were you ever angry at your mom?
SPEAKER_00 (27:54):
Yeah, many times, but not in regards to me, who I
am, how I um know.
I was angry with her for hercoldness.
Okay, but I never blamed her forthe FASD because I always saw
(28:17):
her as struggling with thealcohol.
So I saw the alcohol as as theculprit.
Okay.
Um again, coming from a nativefamily, I have seen many
examples of um how certainsubstances cross cultural
barriers in a very bad way.
(28:39):
Okay.
And um physically, it's not thebest thing for some people to
drink.
And uh I can have a drink, but Idon't choose to drink.
So if I go out socially andsomebody says, You want a glass
of wine, everybody else having aglass of wine, I'll have a glass
of wine, that's not a problem.
But you're never gonna catch megoing out to have a drink, if
(29:02):
you know what I mean.
That's that's that's not mything.
So um, and that's you know,personal choice, and I just
don't like the way it feels.
So, no, I don't either.
However, there are many peoplewho have a journey to make with
grief, loss, and acceptance whenthey do get the diagnosis.
(29:25):
And are they angry?
Yes.
Do they have the right to beangry?
Absolutely.
Yeah, that is a is a piece thatyou need to come to on your own.
So when somebody comes into mygroup and they go, I hate my
mom, I hate my mom, I will notdisagree with their feelings.
I will try to show them thatmaybe there's more that they
(29:49):
need to take into account,things they don't know,
situations, etc.
And through time, I often see asoftening, and that they start
to realize my mom's.
A person too.
And people make mistakes.
She didn't do this on purpose.
SPEAKER_02 (30:06):
Yeah.
SPEAKER_00 (30:07):
So who's the victim?
And who's the culprit?
Maybe it's the alcohol and notthe mom's.
SPEAKER_03 (30:15):
Yeah.
It's hard to come to that.
You know, we it affects us forthe rest of our life.
And I mean, that's a lot tocarry.
I and I don't know.
Did your your mom had passedwhen you found out?
SPEAKER_02 (30:29):
Yes.
SPEAKER_03 (30:30):
So she never knew.
SPEAKER_02 (30:32):
No.
SPEAKER_03 (30:33):
Okay.
I wonder how she would havefelt.
Can you tap into who who youthink she might have been if she
would have known?
SPEAKER_00 (30:43):
I think initially she would have pushed back.
I know in her heart of heartsshe knew that something happened
at some point.
But it might take her a littlewhile that she she would accept
the fact that um yeah, maybe uhyou drank.
I think she would.
SPEAKER_03 (31:03):
When we were younger, you know, people didn't
really think about it as much asthey do now.
I mean, there's a lot moreinformation out there.
I mean, if you're drinking nowwhile pregnant, you probably
know that you shouldn't be.
But back when we, our parents,were pregnant with us, they it
(31:25):
wasn't as prevalent.
And, you know, it and they mightnot have done things
intentionally as much as, youknow, now it it's known.
Don't drink while pregnant.
But I really do think that thereis a lot of us out there, like
you said, there's a lot morethan people realize.
(31:47):
There's people that don't thatdon't have a great working
memory, who have diff had haddifficulties in schools, and
they have a lot of disabilities,and they don't understand why
they have the differences thatthey do, and they may never
(32:07):
because they don't look into it,but it could have been because
sadly, huge chunks of thehomeless population will be
neurodivergent people, and I seethat constantly.
SPEAKER_00 (32:24):
Um one of the most heartbreaking things to go to
like a big conference is whenyou go outside of the hotel.
I mean, you're in a five-starhotel, everything's grand, and
people are opening doors foryou, and all that stuff.
You walk outside, and there's aguy sleeping on a grate.
SPEAKER_03 (32:44):
That's that's hard.
SPEAKER_00 (32:46):
I meet a lot of people outside of hotels, and I
have some really, really goodconversations because I mean, at
any point that I could be next.
And that's the functionalreality that an adult with FASD
has to live with.
Is um you're always living on aknife edge.
You make that one mistake, andwho knows what could happen.
(33:09):
It can be it can be a lot ofpressure.
However, the way I look at it isthere's a certain amount of
freedom that comes withneurodivergence.
Um it's the the the classic,it's not thinking outside the
box.
There is no freaking box.
The box does not exist.
(33:30):
Um, all ideas are free form,flowing, they can go from here
to there to there, and it's awonderful feeling.
I couldn't imagine having abrain that doesn't work that
way.
When I found out that noteverybody has a voice in their
head, I was amazed.
Because when I think about doingsomething, there's a voice.
It's my voice saying, Okay,well, you have to open the door
(33:53):
this way and don't forget toduck your head.
I am functionally telling myselfthe steps as I go through life.
I realize not everybody doesthat.
They just automatically, oh,duck my head, remember, and it's
not even, but we're like thedifference between an automatic
transmission and manual.
(34:15):
I have to think abouteverything.
SPEAKER_02 (34:18):
I love that.
SPEAKER_00 (34:20):
Every single step is like, you know, shifting gears.
I gotta clutch, I gotta put thegear in, I gotta put the clutch
out, I gotta remember to put thegas on, and at the same time
keep an eye out for everybodythat's oh wait, I have to put
the brakes on there, I'm out ofgear and I'm in neutral, and now
I gotta put it back in gear andI gotta gear up, gear up, oh
geez, I gotta do it again.
Every thought process is likethat.
(34:42):
We get tired.
So um, like in the educationthing, one of the things that we
stress, no homework.
Those kids have just had six oreight hours, and for someone
with a neurodivergence, that's awhole lot of gear shifting.
And then you're gonna give themhomework?
(35:03):
No, no, no.
IEPs have to say no homework.
SPEAKER_03 (35:07):
Yeah, you you know my story and what I used to do
in order to make it with all thehomework, and I had to teach
myself how to learn because Ididn't know how to learn.
And if I was gonna make it inthe school system with a C, you
know, I mean, I had to uh readinto a tape recorder, listen to
(35:28):
it back, then I would takenotes, then I would, you know,
remember that little bit that Iwould write down enough to be
able to take a test, and then itwould be gone.
You know, I mean, that's what Iwould have to do.
And I did it all the way to amaster's degree, but I was
determined, and and noteverybody is able to do that.
And I don't, you know, I wasjust really determined to do it,
(35:49):
but it took every ounce ofenergy in me to do it.
So, and and I don't think thatpeople even understand like to
put something like thistogether.
It it's a lot more than theaverage podcaster, or a lot more
than what you have to go throughin order to get ready to go
speak.
Or, you know, I can remember oneof the first times that you were
(36:12):
gonna go speak and you weregonna get on an airplane and all
this stuff, everything, all thesteps were laid out for you.
And I don't know.
I mean, is it getting anyeasier?
Is it getting a little bitbetter?
SPEAKER_00 (36:24):
Uh yeah, I still the hardest part is the pre-planning
and putting everything in placeand making sure that you know my
flight arrives not six hoursbefore the hotel allows check-in
and things like that.
Yeah, that that's that's stillhard.
It really is.
SPEAKER_03 (36:44):
It's the executive functioning that we don't have.
SPEAKER_00 (36:47):
Yes, yes, and it is the challenge.
Yeah, but I love challenges, soI keep doing it.
Although, you know, it takeshalf the fun out of it.
I like I like the writing, thethe performing, the the the
piece, if you want to call it.
I call them gigs because youknow I like to to rock my way
(37:08):
through life.
So um it's a gig.
I still just try to have funwith it, and I do.
I'm meeting so many people.
It's incredible.
SPEAKER_03 (37:18):
That's what I love.
You know, I mean, we have, likeyou said earlier, we have such
big hearts, and we love meetingother people where they are.
We want to hear their story, wewant to make a difference, and
we're change makers, and we haveto work a little harder at it,
but we're giving our all inorder to do it.
(37:41):
And I think, you know, I wouldlove to hear you talk more about
flying with broken wings andwhen it started and where you
are now, and because there's somany people that are living with
it, but are also caregivers ofpeople who are helping people
with FASD.
And you're also helping thosepeople as well.
And I'm one of those now.
(38:01):
I'm on both ends, and it's awhole lot, it's a lot harder to
be a caregiver of somebody withFASD to then actually have it
yourself.
Because, you know, that's me.
I got it, I'm good, whatever,I'll figure it out.
But it's ripping my heart out tohelp my child.
And I adopted him when he wasfour, almost four, and he was
(38:23):
nonverbal.
And to see where he is now, I'mso proud of him.
But, you know, it's so muchharder.
And I really appreciate yourgroup flying with broken wings.
How are you reaching people?
And what kind of uh differencesand messages are you doing in
your group on Facebook?
SPEAKER_00 (38:43):
Um, uh again, it's uh it's the the same basic
mentality that um we're allequals in the group.
Uh there are a lot of people onthe spectrum.
And yes, we do give precedenceto the voices of people on the
spectrum because we made a safeplace where they can share not
(39:07):
just what they've learned, butwhat they haven't learned yet.
They can ask questions, they canshare their fears, and this this
helps, I think, the caregiverssee us as people, not problems.
So having that mix in there isvery important.
And um, of course, I'm I'm incharge of the educational
(39:31):
component, and I try to putstuff out that not only helps
us, but also helps thecaregivers understand us better.
So, in in our own little way,it's it's where the profession
there are a lot of professionalsin the group.
It's amazing the number ofpeople who are also watching our
(39:53):
conversations and how we takecare of each other.
We take care of caregivers, wetake care of ourselves, how we
take care of each other is Ithink what's making the
difference.
When someone comes in, okay, uhthere are a lot of parenting
groups out that out there thatdon't have the people they're
(40:13):
talking about in the group.
So parents are free to come inand rant, you know, I hate this,
I hate that, my kid, blah, blah.
That does not fly in in thegroup very long.
And I don't have to step in.
Other people are like, uh, thatconversation is probably better
in another group.
They kindly try to tell thepeople that this isn't the
(40:36):
place.
This is a place that we all cometo learn.
And I learn constantly aboutother people on the spectrum,
what they're dealing with everyday and things like that.
And that helps me immensely inmy work too, because I'm not
good at the abstract, so I can'texperience what somebody else is
(40:57):
experiencing.
So their version of FASD is asforeign to me as mine would be
to them.
However, when they talk and theyexplain, then I can understand.
And that's the you know, the thebasic thing.
If you want to go back to themoms, when we know better, we
can do better.
(41:18):
And you know, so many times I'veI I love birth moms.
They they come up to me and it'slike, you guys are changing the
world.
Yeah, something happened.
Yeah, I dropped a cup of coffeeone time too.
That happened.
It doesn't ruin my life now, anduh, I'm not saying you got you
can compare the two at any umpoint in time.
(41:40):
However, we can't dwell on it.
We're here, we're living, we'rewe're breathing, we feel
everything, we love being alive.
Um I hate seeing that chippedaway in people.
So I have to speak out and Ihave to go there and I have to
tell people there is a betterway.
SPEAKER_03 (42:01):
Yeah.
I think that you touched onsomething too, and I don't know
if everybody with FASD has thisbecause I'm sure that a lot of
us are buried down and out andgo through the seasons of pain
and shame and all of thosethings.
And I'm not saying that thosearen't a part of it.
What I'm saying is theresilience factor is so strong.
(42:26):
And I the the I always have theglasses half full take on
things.
And I don't know where thatcomes from.
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.
(42:46):
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.
And I don't know.
SPEAKER_00 (43:00):
No, but you do know.
Every day is a new day.
Is that why?
Yes, for for us, when we wakeup, it's a brand new day.
SPEAKER_03 (43:12):
Is it like short-term memory person on
Saturday Night Live?
SPEAKER_00 (43:16):
Kind of, kind of like, yeah, it's kind of like
groundhog day.
It's like, yeah, however I feltyesterday, I'm probably gonna
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, I don't dream.
(43:40):
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_03 (43:51):
Like you've been tested, you've been tested, and
you don't go into REM.
SPEAKER_00 (43:55):
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 strength.
(44:17):
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 comeback.
SPEAKER_03 (44:28):
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.
(44:49):
It doesn't come right when Iwake up.
And I never put that togetherbefore.
SPEAKER_00 (44:55):
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_02 (45:18):
Yeah.
SPEAKER_00 (45:19):
And I I call it it's giving myself grace,
understanding that don't maybemake 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
(45:42):
hour and a half when I thinkabout it.
So yeah, I try um if I have likea 7 a.m.
uh start for for an event, I'mway up four or five.
And that's just to get my braingoing.
SPEAKER_03 (45:59):
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
(46:20):
noises and the social stuff andeverything.
It's just a lot.
And he is done, he's spentwithin an hour of being
anywhere.
So we um keep him pretty close.
And he's nine.
But yeah, I mean, it's it'sreally difficult for him as
well.
And so uh we have quite theroutine.
(46:43):
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
(47:06):
productive with him.
SPEAKER_00 (47:08):
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
(47:28):
coming to school fighting withtheir brother.
SPEAKER_03 (47:31):
Did you have meltdowns?
SPEAKER_00 (47:33):
I wasn't allowed.
Okay, if that makes any sense.
Um yeah.
And also because of the lifewith 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.
(47:56):
If I melted down, we didn't havebreakfast 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.
(48:16):
It's a long time ago.
First time I got arrested, I wasseven years old.
I was running on a train and thecops caught me.
SPEAKER_03 (48:24):
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
(48:46):
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
take care of the people whoshould be taking care of us.
(49:10):
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
figuring it out.
We had to figure it out really,really young because the people
(49:34):
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
ones.
And I think that that does carryon into who we become as adults.
SPEAKER_00 (49:57):
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.
(50:20):
And uh that busted doors, um,furniture.
And the thing that was mosttelling was the stuff that I
destroyed that I actively wentafter was mine.
It wasn't other people's stuff.
I hurt myself.
SPEAKER_03 (50:38):
Yes, you hurt yourself.
SPEAKER_00 (50:39):
And 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.
Intentionally.
Occasionally there'd becollateral damage.
You'd smash out the door and apiece of wood flies and breaks a
(51:01):
cup or something.
I would be But yeah, what I wasdoing was I was hurting myself.
SPEAKER_03 (51:08):
How long did it take you to be okay with who you
were?
SPEAKER_00 (51:14):
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 this mortal toil kind
of thing and just get it overwith.
I wasn't gonna take any activesteps.
But like there was no joy inlife.
I was a success.
I was a successful photographer,had many relationships, but they
(51:39):
only went so far because Icouldn't open up.
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 loved it.
I had to unlearn all of that.
Yes.
Yeah, that's what I'm saying.
SPEAKER_03 (52:00):
FASD is so complex, it's so complex.
Because when you think about it,the those people, I mean, I my
biological mom wasn't able totake care of me, plain and
simple.
She didn't want me.
And there's all these differentthings that go along with that.
Now, my son, and you know, I'mtrying really hard not to tell
(52:22):
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
(52:43):
finds out, well, what is FASD?
What does that mean?
And so, you know, we have triedto say things in a very
simplistic way, which uh doesn'treally offer a lot of blame
anywhere, but he's very angryand that this is his brain.
(53:04):
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 bedifferent um how you present.
SPEAKER_00 (53:19):
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.
(53:42):
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 (53:56):
Right.
SPEAKER_00 (53:56):
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
(54:17):
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 (54:33):
Right.
SPEAKER_00 (54:34):
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_03 (54:51):
Okay, but if they're asking, you should answer.
SPEAKER_00 (54:55):
Yes, absolutely.
Absolutely, but you don't wantto overload them with
information or a lot ofemotional 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.
(55:15):
We need because one of the worstthings that you can do is is you
know, sort of try and attack amother-child bond, and that's
the way it would be interpreted,and then the child is not going
to be open to the informationbecause they think it's going to
be an attack on them and theirmom.
So again, um, we try to keep theinformation as age-appropriate
(55:38):
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, etcetera.
SPEAKER_03 (55:53):
Yeah.
And you also the chronologicalage of a child doesn't mean
anything with somebody who hasfetal alcohol um because uh for
sure there's regression andtheir chronological age and
their emotional age iscompletely different.
Completely different.
(56:13):
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 when Iwas 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_00 (56:38):
Oh, me too.
Me too.
Um, like I still laugh at poopjokes.
SPEAKER_03 (56:44):
I do too.
But they, you know, it's a duty.
We have to laugh at those.
SPEAKER_00 (56:50):
Exactly.
Exactly.
And that doesn't necessarilyever leave us.
It's not fake.
It's you know part of ourpersonality, 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
(57:12):
and lows.
SPEAKER_03 (57:12):
Okay, talk about that though.
What exactly is dysmaturity?
SPEAKER_00 (57:18):
Um see, I'm not really, really up on this part
right now.
SPEAKER_03 (57:23):
Okay, all right.
SPEAKER_00 (57:24):
Well we have about 10 different brain domains,
which are areas of function inour brain.
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.
(57:46):
Um, cognitive function is uh isa brain domain.
It's to your understanding, yourability to communicate, take
that information in and utilizeit properly or in a good way.
Also words, um, and all of thesedifferent domains coupled with
(58:07):
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 whatthey can see is you might have a
cognitive age of, like you weresaying, uh, 15, 14.
Your emotional age, how youreact emotionally, could be
(58:27):
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
(58:48):
be.
And I really wish I had the fulllist in front of me.
It's it's really fascinating.
SPEAKER_03 (58:53):
That is the end of part one with RJ Formack.
It's been a powerful hour.
Thank you so much for beinghere, RJ, for opening up and
helping us understand what lifewith FASD really looks like.
The challenges, yes, but alsothe strength, love, and
resilience that shines throughit all.
This conversation has remindedme that behind every label is a
(59:13):
human being who's just trying tobe understood and that empathy
can change everything.
We really misunderstand FASD,and I hope that this episode has
helped.
We've only just started toscratch the surface.
Next week, RJ and I will go evendeeper into the tools, the daily
strategies, and the hope thathelps families keep moving
forward.
You won't want to miss it.
(59:35):
Until then, rememberunderstanding creates
connection, and connectioncreates change.
We'll see you next week for parttwo.
Welcome to Real Talk with Tina and Ann.
I am Anne, and today's episodeis deeply personal to me.
Today we have RJ Formack, and weare talking about a condition
that deeply affects millions ofpeople around the world, yet, so
many people still do not fullyunderstand it.
If you want to understand thelife of a person who has had to
(00:29):
live and overcome aneurodivergence that affects up
to one in 20 United Statesschool-age children, according
to the CDC.
And according to the Center forAddiction and Mental Health, in
2024, 119,000 children are bornevery year who have FASD,
otherwise known as fetal alcoholspectrum disorder.
(00:49):
And the global prevalence ofFASD is approximately 7.7 per
1,000 in the general population,with rates potentially as high
as 30% in high-risk populations.
These numbers highlight theimpact alcohol consumption has
during pregnancy on fetaldevelopment.
Individuals affected by thishave a lifetime of difficulties.
(01:12):
And I think many will be shockedto hear these numbers.
But first, I just want to say toyou, RJ, brother from Another
Mother, the founder of Flyingwith Broken Wings, an online
support and awareness community,and co-creator of Red Shoes
Rock, a global movement thatbrings visibility and
(01:35):
understanding to those who livewith FASD.
RJ, I am so glad to have you ontoday.
I am just thrilled.
SPEAKER_00 (01:44):
It's always a pleasure to speak with you, and
we go back uh a few years now,and uh we've been on this
journey separately together, butalways keeping in touch.
And I think that's fantastic.
I love what you're doing.
You you're really changing theworld for a lot of people.
Great job.
SPEAKER_03 (02:01):
Well, you are as well.
I mean, I am so proud of you.
I'm so proud of us, actually.
You know, I mean, look at wherewe started, and I was trying to
figure out how long it's been.
I mean, it's been almostprobably a couple decades.
I don't even know how long hasit been.
SPEAKER_00 (02:19):
At least 15 years.
SPEAKER_03 (02:21):
At least.
That's what I was thinking.
SPEAKER_00 (02:23):
I'm terrible with with time.
So let's say 15 and maybe alittle bit more.
SPEAKER_03 (02:29):
Yeah.
I was thinking the same thing.
It goes back to when you and mewere both, we we knew that we
had been diagnosed with FASD.
And Jeff Noble brought ustogether and we started doing
shows kind of like this, but itwas it was the early stages of
streaming services, and we had acall in show, and the two of us,
(02:53):
we started this little Facebookgroup outside of your very
successful Flying with BrokenWings.
And it was super fun.
I mean, I think that it was thebeginning for both of us.
It sparked our voice uh in thisway.
SPEAKER_00 (03:06):
Oh, definitely, definitely.
Um, we experimented, we trieddifferent things, and uh we we
had like what two seasons of ourof our podcast.
It was an audio-only podcast,obviously.
And uh we had no boundaries.
I remember there were a coupleof times we both came off and we
were both totally shell-shockedand just just totally wiped out.
(03:31):
But we were reaching peoplewho'd never heard what we were
talking about, and people whowere living with it that didn't
know.
It's amazing the number ofpeople who will listen to an
advocate and start puttingthings together and then start
seeking their own diagnosis.
Those numbers are amazing.
SPEAKER_03 (03:48):
Yeah, they really are.
We did talk about the numbers inthe United States, but you're in
Canada.
So where what are the numbers inCanada?
SPEAKER_00 (03:57):
Well, um, the official numbers are um at about
four percent.
SPEAKER_03 (04:03):
Okay.
Yeah, I knew it was higher.
Yeah.
But part of the reason why it'shar higher, too, is because you
guys are just so far ahead ofus.
SPEAKER_00 (04:13):
Our diagnostics are catching a lot more.
So our numbers and ourprevalence are starting to rise.
I personally think it'll go alot higher than that.
And um, there are many peopleour age who are who have FASD
who don't know it.
Because um 100%.
Well, I was 47 when I wasdiagnosed, and I was the first
(04:36):
person in this part of Canada tobe successfully diagnosed as an
adult.
I'm 64 now.
That's not that long ago.
So it's only been in that amountof time that we're starting to
catch the ones who aren't kidsnow.
Because as he was saying, thisis lifelong.
A lot of people think it's likea life sentence.
I think it's an adventure.
(04:57):
Yeah.
I have I have an attitude aboutit.
Um, even though I was diagnosedlate, I had to fight for my own
autonomy in life.
Yeah, I was the weird one.
I was the one who was alwaysdoing crazy kind of stuff all
the time, and the one who wenttoo far and said too much and
(05:18):
laughed at uh at things thatweren't funny, just totally
inappropriate, but I was real.
And despite the fact thateveryone kept telling me I was
wrong, I couldn't change who Iwas, so I had to accept that.
And I grew up knowing that,yeah, I'm a weirdo.
If you don't like it, too bad.
SPEAKER_03 (05:40):
I like the 100%, and I love you, and you are perfect
just the way you are, and youalways have been.
As long as I've known you,you're a really special, a
really special guy.
And I have three kids who haveFASD, and they are all amazing
(06:02):
kids.
So yeah, it the one thing aboutit is that, you know, sure we
want to get out there and wewant to do the fight, you know.
Tell people we just had uh wejust came out of September and
it was uh the set the ninthmonth, the ninth day, you know,
it represents not drinking fornine months.
(06:23):
And we want to get thosemessages out there 100%, but
we're here, you know, we'realready here.
And and that's also the othermessage that we want to get out
there is that, you know, there'sa lot of us that are here that
are already born with FASD.
And so, you know, we're we'resome of us are grown up, some of
(06:44):
us are still young kids, and wewant to be able to get that
message out in who we are.
And um, first of all, you know,I wanted to ask you, RJ, who is
RJ?
I mean, what was your life likegrowing up?
SPEAKER_00 (06:59):
Um RJ.
Oh, he's just some guy.
Um I followed the classic nohope trajectory.
Okay, first off, I'm FirstNations, I'm native, um, what
you would refer to as Indian inthe United States.
When I was born, my mother gaveme up at birth.
(07:23):
Um, she I was she was unwed, Iwasn't expected, it was 1961.
Life was a lot more judgmentalin those days, and uh she
thought, okay, well, I'll justyou know forget about this and
learn nothing.
Um her mother, my grandmother,did not like that idea at all,
(07:44):
and she stepped in and took me.
There's no adoption going onhere, we're taking this kid
home.
So I ended up being raised by mygrandmother, and that went fine,
but they kept trying to reuniteme with my mother.
She would get stable for awhile.
She had um a problem with umalcohol consumption, and that
was um a weakness of hers.
(08:06):
And she would go throughrelationships, she would um seem
stable for a while, I would getsent to live with her,
everything would crash, andthere'd be fights and kinds of
stuff like that, and then Iwould go back to my grandmother
for a little while, but I'mcoming back to my grandmother
every time with all theseexperiences, very, very negative
experiences.
(08:27):
Um, so eventually, when I was 12years old, I sort of was just
too much for my at that point.
My grandmother was my age, 65,roughly, and uh my grandfather
was in his mid to late 70s.
Okay, they couldn't handle ateenager at that point who was
(08:49):
super rambunctious, who hadADHD, was bouncing off the
walls, 100 miles an hour all thetime.
Yeah, yeah, and frustrated andangry.
One of the things that reallyfrustrated me as a kid was I was
always getting in trouble for umbeing non-compliant, let's say.
I would ask why.
(09:10):
Someone would say, go dosomething.
And I would innocently, justwanting to know why the
reasoning was, because I wascurious.
I'd ask why.
And that would end up with uhincentive to be compliant, let's
say what it was in those days.
So yeah, by the time I was 14, Iwas in trouble with the law.
(09:32):
I ended up being removed from mygrandmother's by the courts and
uh went into the foster caresystem.
Well, you know, I didn't fostervery well, and uh I went through
13 foster placements in 12months.
At which point they gave up onme, went back to the court, had
(09:53):
me emancipated as an adult, andthen I was placed into an adult
group home.
If I screwed up there, I wasgoing to jail.
SPEAKER_03 (10:01):
How old were you then?
SPEAKER_00 (10:02):
I was at this time 15.
SPEAKER_03 (10:05):
Okay.
SPEAKER_00 (10:06):
And I had been emancipated as an adult.
I thought it was really cool.
I didn't realize that, you know,then I could be charged for
anything as an adult.
SPEAKER_03 (10:17):
Yeah, that's pretty scary.
What kind of behaviors are youtalking about that caused you to
go through the system like that?
SPEAKER_00 (10:23):
In particular, I broke into a house and
vandalized it.
I stole I stole a truck anddrove it around for a while,
just dry riding and damaged it alittle bit because kids are kind
of going.
I didn't drive that well.
So I bumped it a few times.
Um, but I brought it back towhere I got it from, and um I
(10:46):
ended up getting caught becauseI had left um a shoe print in
paint.
Now, the one thing nobody knowsis I had met a girl, but she
lived long distance away fromme, and I needed to contact her.
I couldn't use my phone becauseit was a secret, and these
(11:08):
people were on vacation.
So I went in to make along-distance phone call, and
then to cover my tracks, I madea mess.
So, in your brain, I could nevertell anyone that part, and I
ended up with five yearsprobation out of the whole
thing.
(11:29):
And then I was thrown into themental health system because
they thought I was nuts becausethey couldn't understand why I'd
done this, and I I was tooembarrassed by the fact that it
was more about raging teenagehormones to tell them that it
was about making a phone call,not about wrecking somebody's
house out of anger.
(11:51):
So that was subtrafuged and itgot me in way more trouble.
I learned very quickly, I just,you know, I deal better with the
truth.
It's better not to try and besneaky for me.
So yeah.
And I ended up in a group homewith a woman who years before
there was even a term for fetalalcohol spectrum disorder,
(12:13):
seemed to understand at leastneurodivergence.
When I first moved in, the firstsix weeks, I sat in my bed
alone.
We had a ward, so there was likefive guys there, but I had my
own bed.
It was my own space.
Nobody else would touch it,theoretically.
And you know, it was mine, andthat's the only place I wanted
(12:35):
to be.
She would let me take my mealsup there, like I had to come
down and get it, obviously.
It was upstairs of her house,and she'd let me acclimatize up
until that point.
It had been 12 months of hi,this is your new family.
Get out of here.
Hi, this is your new family.
We don't want you.
And so I was so defensive.
(12:56):
So it took me about six weeksuntil I finally came down to eat
with the family.
SPEAKER_02 (13:01):
Wow.
SPEAKER_00 (13:02):
That was the way she approached me the whole time.
She allowed me to be me.
She gave me autonomy, and thatin itself was such a learning
experience.
What ended up happening was atthe age of 18, I aged out.
So my um childhood supportpayments and everything stopped.
She let me stay there with oddjobs and trying to pay the rent
(13:26):
with a little bit here andthere, but she she let me stay
there until I was 23.
Wow.
And for me, that made all thedifference.
Between 18 and 23, my brainstarted figuring out that um,
yeah, okay, you have to figureout what you're gonna do with
your life.
Yeah.
And then I knew what I had tofigure out was um, what can I
(13:49):
do?
I know my personality, I knowthat I'm clear there, I'm
everywhere, I'm a million milesan hour, and I can't do a
sit-down job.
I cannot.
So I looked for where my talentswere, and those are in the more
artistic realm, and I end upgoing into television, and the
rest is all history.
SPEAKER_03 (14:10):
Isn't that interesting that we both went
into media?
I think that's reallyinteresting, us two FASD people.
SPEAKER_00 (14:18):
Um people with FASD often see things in a way I'm
I'm working on uh on a projectright now, or I'm gonna explore
that people with FASD lead withtheir hearts.
We do everything with thatemotion built in.
It's not separate.
(14:39):
If we're excited and on yourteam, we're pushing, we're ready
to go, we're like racehorses.
100%.
And you know, if we're mad,we're really mad.
We we feel it in our hearts,it's not just in our heads, we
feel it.
So people with FASD are weintegrate that emotion into our
(15:00):
daily life.
And I think this is what a lotof people see in us that they
find attractive is that we canspeak with emotion that we can
feel in that moment.
And we often live in the moment,and that can be either good or
bad depending on the moment.
Yeah, but uh yeah, FASD isfascinating to me.
(15:23):
And learning how my brain worksand finally understanding that
just it was something I had toshare.
SPEAKER_03 (15:30):
You know, that's really interesting that
realizing what your brain waslike with FASD.
I don't know.
I mean, it took me a lot ofyears to get to that point for
me to really understand.
I mean, I was a screw up.
If you would have looked in thedictionary under screw up, there
I was.
I mean, I couldn't figure itout.
(15:54):
And everybody else around me inthe classroom, you know, they
were all just sitting theretaking notes.
They were doing their stuff.
I was watching them to figureout what I was supposed to do.
I always felt like it was 10steps behind everybody.
What I was legitimately tryingto keep up.
I wasn't purposely trying to dosomething wrong.
(16:14):
And I even had a teacher say tome, you know, um, Ann, why are
you the only one in theclassroom that that's not doing
what they're supposed to bedoing?
And my only answer was, I don'tknow.
Uh, and I really didn't know.
And I and because my heartwanted to do what was right.
And I look at my son, who it'sthe same thing.
(16:36):
I mean, he's in trouble all thetime, unfortunately, and and
we're doing everything that wecan to help him.
And he is upset that he can'tmake the right choices.
And I think figuring out theFASD brain is huge for us to
understand why we do the thingsthat we do, even when we're not
trying to.
I mean, that's that's huge.
SPEAKER_00 (16:57):
And uh, what a lot of people don't understand is
for someone like you or me, inthose quiet moments, just as
we're drifting off to sleep, wefeel shame.
SPEAKER_02 (17:09):
Yeah.
SPEAKER_00 (17:10):
Because of the way we are, and that's unfortunate.
However, because we don't wantto be that way.
Um one of the most pivotalmoments for me was when I got my
diagnosis.
The diagnostician sat me downand she said, Okay, I want you
to understand one thing it's notyour fault.
(17:33):
See, oh see, those are beautifulwords.
Nobody ever said that to mebefore.
It broke me.
It still does, because thatfreed me to forgive myself
because I was owning all thethings that I did, and I know
you probably felt that too.
I did that regardless, good,bad, or whatever, I did it.
(17:57):
I did it, and I feltresponsible, whether it was
circumstances or whatever, andfinally I understood that my
brain was conspiring against me,putting out obstacles that I
didn't know were there, and thatyou know, it wasn't my fault I
was this way.
So that was that was such afreeing moment for me.
(18:20):
Oh, yeah.
See, I still get emotional aboutit.
SPEAKER_03 (18:23):
Because this is so deep.
And we're legitimately reallygood people.
My son is probably one of themost beautiful souls ever.
And I am gonna cry because uh hejust went through uh all this
testing at a hospital in ourarea.
(18:45):
And we really, you know, it'sinteresting that you guys are so
far ahead of us, but one of ourbiggest hospitals in the United
States just started for kids, anFASD clinic just started.
And my kids were one of the top,they they were three of the top
(19:07):
ones that they wanted to lookat.
So my one son went in and he hadalmost about eight hours of
testing.
And it was, you know, from facemeasurement and like all this
other stuff that they did.
And of course he came outcompletely having FASD.
(19:28):
And I already knew that he wasgoing to, and it's a spectrum.
Everybody falls within thespectrum somewhere, and um, he
unfortunately has real wasreally hit hard by it.
And I just, you know, it itmakes me weep too.
It makes me cry because he, likeI said, has such a beautiful
(19:49):
soul.
And he in no way, he wants toplease.
He wants to please.
But he comes home from schoolwith really low behavior grades.
He's in a behavioral schoolbecause he's not able to really
academically even keep up.
So, you know, we're just, youknow, we just try to work with
the academics or I mean with thebehaviors.
(20:12):
And he just feels like he he'sfalling short every single day.
He just is falling short in hiseyes every single day.
And it's just so sad.
SPEAKER_00 (20:22):
Yeah, yeah, yeah.
Um, I I think he could help theschool by having them address um
what you're seeing is symptoms.
SPEAKER_02 (20:33):
Yeah.
SPEAKER_00 (20:34):
They're symptoms of what's going on in his brain.
It's a clue, it's a place tostart.
SPEAKER_03 (20:40):
So did you go through school?
Did you go through the regulartraditional route, like you
know, first through twelfthgrade, and you just went in
regular classrooms?
Yeah.
Okay.
SPEAKER_00 (20:57):
I was all I was always screw up, except in the
English and history, and yeah,pretty well English and history
were my two really, really I hadincredible strength.
Everywhere else I was a totalscrew up, class clown,
disruptive, because I, you know,if I didn't understand what was
going on, I started to make somenoise kind of thing.
(21:19):
I, you know.
SPEAKER_03 (21:20):
See, and that's what I say about my son and also
about me in school, is if, youknow, if you put somebody, even
the smartest, you know, whateverit is, they and you put them in
a rocket science classroom,they're gonna be acting up, you
know, because you're speaking adifferent language.
You're not reaching them wherethey are.
(21:40):
If you're teaching way abovewhere somebody is, then you're
not gonna be able to reach them.
And of course you're gonna seebehaviors.
SPEAKER_00 (21:48):
Exactly, exactly.
But you know, at that time thereweren't even like special ed
classes, there's no such thingas no, no, it was just you get
sent to the office.
I spent most of my school yearssitting in the hallway outside
the office waiting for theprincipal.
Back in those days, they stillhad the strap.
(22:09):
I experienced that more thanonce too.
Oh, I was paddled.
Because the the assumption usedto be um you curb behaviors uh
by by physical force.
The kid will remember not to dothat again.
Well, it doesn't work when thekid does why they're getting in
trouble in the first place.
SPEAKER_03 (22:31):
And that's one of the things that the FASD people
at the hospital explained to meis that with the testing that
they found out with him is thatthe cause and effect isn't
there.
The ability to see, I did thisand this happened.
And for it to re for him toremember that even into the next
day is just too hard.
SPEAKER_00 (22:53):
So yes, completely.
Um like if you want to address asymptom, what they call a
behavior, you need to do it inthat moment.
Because if you do it later,that's no longer in our memory.
Like I have short-term andworking memory issues, which
(23:14):
means an hour, two hours later,I don't remember.
I just um was the MC at aninternational conference for two
and a half days.
I was on stage running aroundeverything.
When I came home, I couldn'ttell anyone what happened
because I didn't remember.
It's coming back two weeks laternow.
I'm because my long-term memoryis sound.
(23:37):
But knowing that I have thedeficits in working and short
term, they're both different butrelated.
I'm able to, you know, forgivemyself for not remembering today
what I will remember in twoweeks.
SPEAKER_03 (23:53):
Yeah, and I'm the same way.
I mean, I have to uh if somebodyasks me direct questions and
says, Oh, did this happen?
I could say yes or no, and thenI can start pulling it out of
me.
But for me to just sit there andyou say, How does it, how did it
go?
Tell me all about it.
Uh yeah.
(24:14):
Yeah, I would appreciate thehelp in helping me get it out.
And that's another thing isknowing how to speak the
language of somebody who hasfetal alcohol.
You know, you have to know theperson, you have to know how to
be able to have communicationwith them.
So you can help them be theirbest self.
SPEAKER_00 (24:34):
In Canada, we've made great strides with what we
call the person first strategy.
Okay.
So um, like CAN FAST, which isthe umbrella organization for
education in in in Canada, haslargely um embraced that because
that's giving the people withexperience voices.
(24:56):
And you can be the bestresearcher, but I'm the owner
operator.
You can see how I operate thisbrain, but you don't do it.
I do.
So only I can tell you what'sactually going on.
And in my head, we can'tvisually see brain changes
except with a few very extremetests, like a functional MRI,
(25:20):
which is like hours long and canbe really hard for someone with,
say, ADHD.
So they have started to realizethat we're telling the truth
about what's going on in ourheads, and they're they're being
being able to utilize that.
So our strategies now are allfirst thing called person first.
(25:41):
It's about the person, not theFASD.
It's the person who's livingwith it that's important.
And we address the person first.
SPEAKER_03 (25:51):
Yeah.
unknown (25:52):
Yeah.
SPEAKER_03 (25:52):
I mean, I think that we try to do that in the United
States.
I mean, uh, even the vocabularythat we use is different than it
used to be, you know, even withum autism, instead of saying
autistic, you know, there arepeople with autism or however
you want to say it, you know, ifyou want to put the person
first.
And I think that that's reallyimportant.
When I used to work at thatschool that you know of for kids
(26:16):
with autism, it was the samething where we put the child
first.
And if you do put the childfirst, then you're going to be
able to maybe meet them wherethey are better.
Because this is not just ablanket diagnosis where every
single person you're going totreat them exactly the same just
because they have something.
So, you know, we have toremember that they are people
(26:37):
first and they have feelings andthey care.
And just because they're doingsomething or they have something
doesn't mean that they aren'tdoing their best.
You know, I mean, they mightactually be doing their best,
even though their best is a lotdifferent than what you think it
should be.
SPEAKER_00 (26:55):
Exactly, exactly.
So um, having that understandingpermeating into the medical, uh,
the mental health areas, as wellas at the as the um general um
social workers.
I have a keynote coming up atthe end of November with the uh
(27:15):
Indigenous chiefs of Ontario.
So they um oversee the entirenative education system.
And I'm going there to speakabout the um neurodivergence and
the um, in in my particularcase, the convergence of FASD,
ADHD, and other symptoms thatand how educators can best
(27:37):
support students so they canunderstand how to help them,
help themselves.
SPEAKER_03 (27:43):
Do you have any key points here?
SPEAKER_00 (27:47):
I'm still working on that one.
SPEAKER_03 (27:49):
I want to ask you a question.
Were you ever angry at your mom?
SPEAKER_00 (27:54):
Yeah, many times, but not in regards to me, who I
am, how I um know.
I was angry with her for hercoldness.
Okay, but I never blamed her forthe FASD because I always saw
(28:17):
her as struggling with thealcohol.
So I saw the alcohol as as theculprit.
Okay.
Um again, coming from a nativefamily, I have seen many
examples of um how certainsubstances cross cultural
barriers in a very bad way.
(28:39):
Okay.
And um physically, it's not thebest thing for some people to
drink.
And uh I can have a drink, but Idon't choose to drink.
So if I go out socially andsomebody says, You want a glass
of wine, everybody else having aglass of wine, I'll have a glass
of wine, that's not a problem.
But you're never gonna catch megoing out to have a drink, if
(29:02):
you know what I mean.
That's that's that's not mything.
So um, and that's you know,personal choice, and I just
don't like the way it feels.
So, no, I don't either.
However, there are many peoplewho have a journey to make with
grief, loss, and acceptance whenthey do get the diagnosis.
(29:25):
And are they angry?
Yes.
Do they have the right to beangry?
Absolutely.
Yeah, that is a is a piece thatyou need to come to on your own.
So when somebody comes into mygroup and they go, I hate my
mom, I hate my mom, I will notdisagree with their feelings.
I will try to show them thatmaybe there's more that they
(29:49):
need to take into account,things they don't know,
situations, etc.
And through time, I often see asoftening, and that they start
to realize my mom's.
A person too.
And people make mistakes.
She didn't do this on purpose.
SPEAKER_02 (30:06):
Yeah.
SPEAKER_00 (30:07):
So who's the victim?
And who's the culprit?
Maybe it's the alcohol and notthe mom's.
SPEAKER_03 (30:15):
Yeah.
It's hard to come to that.
You know, we it affects us forthe rest of our life.
And I mean, that's a lot tocarry.
I and I don't know.
Did your your mom had passedwhen you found out?
SPEAKER_02 (30:29):
Yes.
SPEAKER_03 (30:30):
So she never knew.
SPEAKER_02 (30:32):
No.
SPEAKER_03 (30:33):
Okay.
I wonder how she would havefelt.
Can you tap into who who youthink she might have been if she
would have known?
SPEAKER_00 (30:43):
I think initially she would have pushed back.
I know in her heart of heartsshe knew that something happened
at some point.
But it might take her a littlewhile that she she would accept
the fact that um yeah, maybe uhyou drank.
I think she would.
SPEAKER_03 (31:03):
When we were younger, you know, people didn't
really think about it as much asthey do now.
I mean, there's a lot moreinformation out there.
I mean, if you're drinking nowwhile pregnant, you probably
know that you shouldn't be.
But back when we, our parents,were pregnant with us, they it
(31:25):
wasn't as prevalent.
And, you know, it and they mightnot have done things
intentionally as much as, youknow, now it it's known.
Don't drink while pregnant.
But I really do think that thereis a lot of us out there, like
you said, there's a lot morethan people realize.
(31:47):
There's people that don't thatdon't have a great working
memory, who have diff had haddifficulties in schools, and
they have a lot of disabilities,and they don't understand why
they have the differences thatthey do, and they may never
(32:07):
because they don't look into it,but it could have been because
sadly, huge chunks of thehomeless population will be
neurodivergent people, and I seethat constantly.
SPEAKER_00 (32:24):
Um one of the most heartbreaking things to go to
like a big conference is whenyou go outside of the hotel.
I mean, you're in a five-starhotel, everything's grand, and
people are opening doors foryou, and all that stuff.
You walk outside, and there's aguy sleeping on a grate.
SPEAKER_03 (32:44):
That's that's hard.
SPEAKER_00 (32:46):
I meet a lot of people outside of hotels, and I
have some really, really goodconversations because I mean, at
any point that I could be next.
And that's the functionalreality that an adult with FASD
has to live with.
Is um you're always living on aknife edge.
You make that one mistake, andwho knows what could happen.
(33:09):
It can be it can be a lot ofpressure.
However, the way I look at it isthere's a certain amount of
freedom that comes withneurodivergence.
Um it's the the the classic,it's not thinking outside the
box.
There is no freaking box.
The box does not exist.
(33:30):
Um, all ideas are free form,flowing, they can go from here
to there to there, and it's awonderful feeling.
I couldn't imagine having abrain that doesn't work that
way.
When I found out that noteverybody has a voice in their
head, I was amazed.
Because when I think about doingsomething, there's a voice.
It's my voice saying, Okay,well, you have to open the door
(33:53):
this way and don't forget toduck your head.
I am functionally telling myselfthe steps as I go through life.
I realize not everybody doesthat.
They just automatically, oh,duck my head, remember, and it's
not even, but we're like thedifference between an automatic
transmission and manual.
(34:15):
I have to think abouteverything.
SPEAKER_02 (34:18):
I love that.
SPEAKER_00 (34:20):
Every single step is like, you know, shifting gears.
I gotta clutch, I gotta put thegear in, I gotta put the clutch
out, I gotta remember to put thegas on, and at the same time
keep an eye out for everybodythat's oh wait, I have to put
the brakes on there, I'm out ofgear and I'm in neutral, and now
I gotta put it back in gear andI gotta gear up, gear up, oh
geez, I gotta do it again.
Every thought process is likethat.
(34:42):
We get tired.
So um, like in the educationthing, one of the things that we
stress, no homework.
Those kids have just had six oreight hours, and for someone
with a neurodivergence, that's awhole lot of gear shifting.
And then you're gonna give themhomework?
(35:03):
No, no, no.
IEPs have to say no homework.
SPEAKER_03 (35:07):
Yeah, you you know my story and what I used to do
in order to make it with all thehomework, and I had to teach
myself how to learn because Ididn't know how to learn.
And if I was gonna make it inthe school system with a C, you
know, I mean, I had to uh readinto a tape recorder, listen to
(35:28):
it back, then I would takenotes, then I would, you know,
remember that little bit that Iwould write down enough to be
able to take a test, and then itwould be gone.
You know, I mean, that's what Iwould have to do.
And I did it all the way to amaster's degree, but I was
determined, and and noteverybody is able to do that.
And I don't, you know, I wasjust really determined to do it,
(35:49):
but it took every ounce ofenergy in me to do it.
So, and and I don't think thatpeople even understand like to
put something like thistogether.
It it's a lot more than theaverage podcaster, or a lot more
than what you have to go throughin order to get ready to go
speak.
Or, you know, I can remember oneof the first times that you were
(36:12):
gonna go speak and you weregonna get on an airplane and all
this stuff, everything, all thesteps were laid out for you.
And I don't know.
I mean, is it getting anyeasier?
Is it getting a little bitbetter?
SPEAKER_00 (36:24):
Uh yeah, I still the hardest part is the pre-planning
and putting everything in placeand making sure that you know my
flight arrives not six hoursbefore the hotel allows check-in
and things like that.
Yeah, that that's that's stillhard.
It really is.
SPEAKER_03 (36:44):
It's the executive functioning that we don't have.
SPEAKER_00 (36:47):
Yes, yes, and it is the challenge.
Yeah, but I love challenges, soI keep doing it.
Although, you know, it takeshalf the fun out of it.
I like I like the writing, thethe performing, the the the
piece, if you want to call it.
I call them gigs because youknow I like to to rock my way
(37:08):
through life.
So um it's a gig.
I still just try to have funwith it, and I do.
I'm meeting so many people.
It's incredible.
SPEAKER_03 (37:18):
That's what I love.
You know, I mean, we have, likeyou said earlier, we have such
big hearts, and we love meetingother people where they are.
We want to hear their story, wewant to make a difference, and
we're change makers, and we haveto work a little harder at it,
but we're giving our all inorder to do it.
(37:41):
And I think, you know, I wouldlove to hear you talk more about
flying with broken wings andwhen it started and where you
are now, and because there's somany people that are living with
it, but are also caregivers ofpeople who are helping people
with FASD.
And you're also helping thosepeople as well.
And I'm one of those now.
(38:01):
I'm on both ends, and it's awhole lot, it's a lot harder to
be a caregiver of somebody withFASD to then actually have it
yourself.
Because, you know, that's me.
I got it, I'm good, whatever,I'll figure it out.
But it's ripping my heart out tohelp my child.
And I adopted him when he wasfour, almost four, and he was
(38:23):
nonverbal.
And to see where he is now, I'mso proud of him.
But, you know, it's so muchharder.
And I really appreciate yourgroup flying with broken wings.
How are you reaching people?
And what kind of uh differencesand messages are you doing in
your group on Facebook?
SPEAKER_00 (38:43):
Um, uh again, it's uh it's the the same basic
mentality that um we're allequals in the group.
Uh there are a lot of people onthe spectrum.
And yes, we do give precedenceto the voices of people on the
spectrum because we made a safeplace where they can share not
(39:07):
just what they've learned, butwhat they haven't learned yet.
They can ask questions, they canshare their fears, and this this
helps, I think, the caregiverssee us as people, not problems.
So having that mix in there isvery important.
And um, of course, I'm I'm incharge of the educational
(39:31):
component, and I try to putstuff out that not only helps
us, but also helps thecaregivers understand us better.
So, in in our own little way,it's it's where the profession
there are a lot of professionalsin the group.
It's amazing the number ofpeople who are also watching our
(39:53):
conversations and how we takecare of each other.
We take care of caregivers, wetake care of ourselves, how we
take care of each other is Ithink what's making the
difference.
When someone comes in, okay, uhthere are a lot of parenting
groups out that out there thatdon't have the people they're
(40:13):
talking about in the group.
So parents are free to come inand rant, you know, I hate this,
I hate that, my kid, blah, blah.
That does not fly in in thegroup very long.
And I don't have to step in.
Other people are like, uh, thatconversation is probably better
in another group.
They kindly try to tell thepeople that this isn't the
(40:36):
place.
This is a place that we all cometo learn.
And I learn constantly aboutother people on the spectrum,
what they're dealing with everyday and things like that.
And that helps me immensely inmy work too, because I'm not
good at the abstract, so I can'texperience what somebody else is
(40:57):
experiencing.
So their version of FASD is asforeign to me as mine would be
to them.
However, when they talk and theyexplain, then I can understand.
And that's the you know, the thebasic thing.
If you want to go back to themoms, when we know better, we
can do better.
(41:18):
And you know, so many times I'veI I love birth moms.
They they come up to me and it'slike, you guys are changing the
world.
Yeah, something happened.
Yeah, I dropped a cup of coffeeone time too.
That happened.
It doesn't ruin my life now, anduh, I'm not saying you got you
can compare the two at any umpoint in time.
(41:40):
However, we can't dwell on it.
We're here, we're living, we'rewe're breathing, we feel
everything, we love being alive.
Um I hate seeing that chippedaway in people.
So I have to speak out and Ihave to go there and I have to
tell people there is a betterway.
SPEAKER_03 (42:01):
Yeah.
I think that you touched onsomething too, and I don't know
if everybody with FASD has thisbecause I'm sure that a lot of
us are buried down and out andgo through the seasons of pain
and shame and all of thosethings.
And I'm not saying that thosearen't a part of it.
What I'm saying is theresilience factor is so strong.
(42:26):
And I the the I always have theglasses half full take on
things.
And I don't know where thatcomes from.
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.
(42:46):
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.
And I don't know.
SPEAKER_00 (43:00):
No, but you do know.
Every day is a new day.
Is that why?
Yes, for for us, when we wakeup, it's a brand new day.
SPEAKER_03 (43:12):
Is it like short-term memory person on
Saturday Night Live?
SPEAKER_00 (43:16):
Kind of, kind of like, yeah, it's kind of like
groundhog day.
It's like, yeah, however I feltyesterday, I'm probably gonna
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, I don't dream.
(43:40):
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_03 (43:51):
Like you've been tested, you've been tested, and
you don't go into REM.
SPEAKER_00 (43:55):
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 strength.
(44:17):
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 comeback.
SPEAKER_03 (44:28):
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.
(44:49):
It doesn't come right when Iwake up.
And I never put that togetherbefore.
SPEAKER_00 (44:55):
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_02 (45:18):
Yeah.
SPEAKER_00 (45:19):
And I I call it it's giving myself grace,
understanding that don't maybemake 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
(45:42):
hour and a half when I thinkabout it.
So yeah, I try um if I have likea 7 a.m.
uh start for for an event, I'mway up four or five.
And that's just to get my braingoing.
SPEAKER_03 (45:59):
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
(46:20):
noises and the social stuff andeverything.
It's just a lot.
And he is done, he's spentwithin an hour of being
anywhere.
So we um keep him pretty close.
And he's nine.
But yeah, I mean, it's it'sreally difficult for him as
well.
And so uh we have quite theroutine.
(46:43):
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
(47:06):
productive with him.
SPEAKER_00 (47:08):
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
(47:28):
coming to school fighting withtheir brother.
SPEAKER_03 (47:31):
Did you have meltdowns?
SPEAKER_00 (47:33):
I wasn't allowed.
Okay, if that makes any sense.
Um yeah.
And also because of the lifewith 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.
(47:56):
If I melted down, we didn't havebreakfast 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.
(48:16):
It's a long time ago.
First time I got arrested, I wasseven years old.
I was running on a train and thecops caught me.
SPEAKER_03 (48:24):
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
(48:46):
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
take care of the people whoshould be taking care of us.
(49:10):
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
figuring it out.
We had to figure it out really,really young because the people
(49:34):
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
ones.
And I think that that does carryon into who we become as adults.
SPEAKER_00 (49:57):
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.
(50:20):
And uh that busted doors, um,furniture.
And the thing that was mosttelling was the stuff that I
destroyed that I actively wentafter was mine.
It wasn't other people's stuff.
I hurt myself.
SPEAKER_03 (50:38):
Yes, you hurt yourself.
SPEAKER_00 (50:39):
And 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.
Intentionally.
Occasionally there'd becollateral damage.
You'd smash out the door and apiece of wood flies and breaks a
(51:01):
cup or something.
I would be But yeah, what I wasdoing was I was hurting myself.
SPEAKER_03 (51:08):
How long did it take you to be okay with who you
were?
SPEAKER_00 (51:14):
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 this mortal toil kind
of thing and just get it overwith.
I wasn't gonna take any activesteps.
But like there was no joy inlife.
I was a success.
I was a successful photographer,had many relationships, but they
(51:39):
only went so far because Icouldn't open up.
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 loved it.
I had to unlearn all of that.
Yes.
Yeah, that's what I'm saying.
SPEAKER_03 (52:00):
FASD is so complex, it's so complex.
Because when you think about it,the those people, I mean, I my
biological mom wasn't able totake care of me, plain and
simple.
She didn't want me.
And there's all these differentthings that go along with that.
Now, my son, and you know, I'mtrying really hard not to tell
(52:22):
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
(52:43):
finds out, well, what is FASD?
What does that mean?
And so, you know, we have triedto say things in a very
simplistic way, which uh doesn'treally offer a lot of blame
anywhere, but he's very angryand that this is his brain.
(53:04):
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 bedifferent um how you present.
SPEAKER_00 (53:19):
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.
(53:42):
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 (53:56):
Right.
SPEAKER_00 (53:56):
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
(54:17):
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 (54:33):
Right.
SPEAKER_00 (54:34):
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_03 (54:51):
Okay, but if they're asking, you should answer.
SPEAKER_00 (54:55):
Yes, absolutely.
Absolutely, but you don't wantto overload them with
information or a lot ofemotional 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.
(55:15):
We need because one of the worstthings that you can do is is you
know, sort of try and attack amother-child bond, and that's
the way it would be interpreted,and then the child is not going
to be open to the informationbecause they think it's going to
be an attack on them and theirmom.
So again, um, we try to keep theinformation as age-appropriate
(55:38):
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, etcetera.
SPEAKER_03 (55:53):
Yeah.
And you also the chronologicalage of a child doesn't mean
anything with somebody who hasfetal alcohol um because uh for
sure there's regression andtheir chronological age and
their emotional age iscompletely different.
Completely different.
(56:13):
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 when Iwas 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_00 (56:38):
Oh, me too.
Me too.
Um, like I still laugh at poopjokes.
SPEAKER_03 (56:44):
I do too.
But they, you know, it's a duty.
We have to laugh at those.
SPEAKER_00 (56:50):
Exactly.
Exactly.
And that doesn't necessarilyever leave us.
It's not fake.
It's you know part of ourpersonality, 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
(57:12):
and lows.
SPEAKER_03 (57:12):
Okay, talk about that though.
What exactly is dysmaturity?
SPEAKER_00 (57:18):
Um see, I'm not really, really up on this part
right now.
SPEAKER_03 (57:23):
Okay, all right.
SPEAKER_00 (57:24):
Well we have about 10 different brain domains,
which are areas of function inour brain.
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.
(57:46):
Um, cognitive function is uh isa brain domain.
It's to your understanding, yourability to communicate, take
that information in and utilizeit properly or in a good way.
Also words, um, and all of thesedifferent domains coupled with
(58:07):
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 whatthey can see is you might have a
cognitive age of, like you weresaying, uh, 15, 14.
Your emotional age, how youreact emotionally, could be
(58:27):
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
(58:48):
be.
And I really wish I had the fulllist in front of me.
It's it's really fascinating.
SPEAKER_03 (58:53):
That is the end of part one with RJ Formack.
It's been a powerful hour.
Thank you so much for beinghere, RJ, for opening up and
helping us understand what lifewith FASD really looks like.
The challenges, yes, but alsothe strength, love, and
resilience that shines throughit all.
This conversation has remindedme that behind every label is a
(59:13):
human being who's just trying tobe understood and that empathy
can change everything.
We really misunderstand FASD,and I hope that this episode has
helped.
We've only just started toscratch the surface.
Next week, RJ and I will go evendeeper into the tools, the daily
strategies, and the hope thathelps families keep moving
forward.
You won't want to miss it.
(59:35):
Until then, rememberunderstanding creates
connection, and connectioncreates change.
We'll see you next week for parttwo.
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Rewarded for bravery that goes above and beyond the call of duty, the Medal of Honor is the United States’ top military decoration. The stories we tell are about the heroes who have distinguished themselves by acts of heroism and courage that have saved lives. From Judith Resnik, the second woman in space, to Daniel Daly, one of only 19 people to have received the Medal of Honor twice, these are stories about those who have done the improbable and unexpected, who have sacrificed something in the name of something much bigger than themselves. Every Wednesday on Medal of Honor, uncover what their experiences tell us about the nature of sacrifice, why people put their lives in danger for others, and what happens after you’ve become a hero. Special thanks to series creator Dan McGinn, to the Congressional Medal of Honor Society and Adam Plumpton. Medal of Honor begins on May 28. Subscribe to Pushkin+ to hear ad-free episodes one week early. Find Pushkin+ on the Medal of Honor show page in Apple or at Pushkin.fm. Subscribe on Apple: apple.co/pushkin Subscribe on Pushkin: pushkin.fm/plus
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