Nov. 19, 2025

Beyond Shame: The Freedom of Hearing “It’s Not Your Fault with RJ Formanek on Living with FASD part 2

Beyond Shame: The Freedom of Hearing “It’s Not Your Fault with RJ Formanek on Living with FASD part 2

Send us a text We dig into life with FASD beyond labels: how shame warps identity, how routines protect mornings, and why late-blooming brains change everything. RJ shares the red shoes origin, practical language for kids, and a hopeful path from rage to self‑acceptance. • removing shame and naming “it’s not your fault” • morning reboot, windows, slow processing • routines for sensory load and homeschooling • caretaking as kids and delayed meltdowns • diagnosis as a doorway to forgiveness • ...

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Season 3

Send us a text

We dig into life with FASD beyond labels: how shame warps identity, how routines protect mornings, and why late-blooming brains change everything. RJ shares the red shoes origin, practical language for kids, and a hopeful path from rage to self‑acceptance.

• removing shame and naming “it’s not your fault”
• morning reboot, windows, slow processing
• routines for sensory load and homeschooling
• caretaking as kids and delayed meltdowns
• diagnosis as a doorway to forgiveness
• age‑appropriate truth telling without trauma dumping
• dismaturity and brain domains explained
• comorbidities and “it’s complicated” framing
• experiential learning and practical supports
• neuroplasticity, myelination, and late blooming
• authentic voice: writing like you talk
• mentoring over short‑term coaching
• starting advocacy locally and year‑round
• debunking cultural myths and stigma
• community, hope, and the power of red shoes

You know, hit the like button, subscribe, go to the website, and on our website, you know, you will find a lot of really amazing things because we believe that our differences aren’t deficits. They are the wings that help us fly


Support the show

@Real Talk with Tina and Ann

Chapters

00:00 - Picking Up Part Two

00:33 - Resilience, Positivity, And Morning Reset

03:59 - Routines, Homeschooling, And Sensory Load

07:17 - Caretaking Roles And Hidden Rage

10:41 - Diagnosis, Self‑Forgiveness, And Trust

13:20 - Telling Kids About FASD, Not Trauma

17:02 - Dismaturity And Brain Domains Explained

21:14 - Comorbidities And “It’s Complicated”

24:24 - Learning Styles And Doing It Wrong First

26:56 - Self‑Acceptance And Hard‑Won Wins

29:10 - Turning Pain Into Purpose

31:01 - Red Shoes Rock: Shame To Fire

34:16 - Movement, Books, And Global Reach

37:02 - Gifts, Neuroplasticity, And Late Blooming

41:28 - Finding Voice: From Notes To Mic

44:12 - Speaking, Mentoring, And Real Support

47:24 - Start Advocating Where You Stand

50:15 - Stigma, Indigenous Myths, And Reality

54:12 - Epigenetics And Intergenerational Effects

57:15 - Hope, Community, And A Clear Call

Transcript
WEBVTT

00:00:08.320 --> 00:00:10.240
Welcome to Real Talk with Tina and Anne.

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I am Anne, and today you are going to listen to part two of the conversation that I have with RJ Format because he helped us understand FASD through real stories, lived truth, and that rare mix of honesty and heart that only he and I both can bring to the table because we've known each other for over 15 years.

00:00:33.840 --> 00:00:52.479
In this next part, we get into the things people really talk about, the shame that shadows so many, the relief that comes from hearing this is not your fault, and the lifelong learning curve of living in a world that isn't built with neurodivergent minds in mind.

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RJ opens up about identity, relationships, support systems, and the daily work of showing up for yourself even when the world misunderstands you.

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And let me tell you, some of what he shares here is the kind of insight that stays with you long after the episode ends.

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And it's good advice even if you don't know somebody with FASD.

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This is some powerful stuff.

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So take a breath, settle in, and let's pick up right where we left off, because this next piece of the conversation really matters.

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Thank you, RJ Formanac from Flying with Broken Wings and Red Shoes Rock.

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Look it up.

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They are both great spaces for anybody with FASD or anybody who knows somebody with FASD.

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We really learn a lot about RJ and me in this episode, and it is really, really fun and great and inviting and all the things.

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So listen to the whole thing.

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It's really worth it.

00:01:48.000 --> 00:01:48.879
This is part two.

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I think that you touched on something too.

00:01:51.439 --> 00:02:03.359
And I don't know if everybody with FASD has this because I'm sure that a lot of us are very down and out and go through the seasons of pain and shame and all of those things.

00:02:03.439 --> 00:02:05.599
And I'm not saying that those aren't a part of it.

00:02:05.760 --> 00:02:11.520
What I'm saying is the resilience factor is so strong.

00:02:12.080 --> 00:02:19.599
And I the the I always have the glasses half full take on things.

00:02:19.840 --> 00:02:22.319
And I don't know where that comes from.

00:02:22.479 --> 00:02:32.159
People have often said to me, I don't know how in the world you're able to do all that you're doing and have such a positive outlook all the time.

00:02:32.400 --> 00:02:35.759
And it's not something I'm even forcing myself to do.

00:02:35.919 --> 00:02:37.120
It's just there.

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And I just wake up the next day and I've got this really like let's go.

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And I don't know.

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No, you do know.

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Every day is a new day.

00:02:51.120 --> 00:02:52.319
Is that why?

00:02:52.879 --> 00:02:53.520
Yes.

00:02:53.759 --> 00:02:56.719
For for us, when we wake up, it's a brand new day.

00:02:56.960 --> 00:03:00.639
Is it like short-term memory person on Saturday Night Live?

00:03:01.360 --> 00:03:04.400
Kind of, kind of like, yeah, it's kind of like Groundhog Day.

00:03:04.479 --> 00:03:09.360
It's like, yeah, however I felt yesterday, I'm probably going to feel the same way tomorrow when I wake up.

00:03:09.439 --> 00:03:11.120
I'm happy, I'm ready to go.

00:03:11.280 --> 00:03:14.400
Like when I was a kid, that moment is still there.

00:03:14.719 --> 00:03:21.840
Um when I sleep and I'm we're still trying to figure out if this is a trauma thing or a brain thing.

00:03:22.000 --> 00:03:23.280
I don't dream.

00:03:23.759 --> 00:03:25.360
I do not dream.

00:03:25.680 --> 00:03:34.240
Occasionally I have little glimpses of what I think might have been a dream, but that that's sort of in that period of halfway between awake and the sleep.

00:03:34.639 --> 00:03:38.960
Like you've been tested, you've been tested, and you don't go into REM.

00:03:40.159 --> 00:03:45.680
Um I do, but when I go to sleep, my brain seems to shut off.

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It's black, it's like I don't, I'm not conscious of the length of time that I'm sleeping.

00:03:52.000 --> 00:03:56.240
It's like turning out a light, I turn it on, and it's a brand new day.

00:03:57.199 --> 00:04:01.520
It's a really weird, it's definitely strange.

00:04:01.919 --> 00:04:10.479
So if I was super stressed out when I went to sleep, I wake up at at least at first, it's still a brand new day.

00:04:10.800 --> 00:04:12.719
Then the memory starts to come.

00:04:13.199 --> 00:04:18.800
Okay, that's really interesting because that 100% happens to me.

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I wake up and it takes a while for me to realize what my day is going to be, what happened yesterday, those thoughts and memories and everything start coming back, but it does take a while.

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It doesn't come right when I wake up.

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And I never put that together before.

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I I give myself, and I'm able to do this because I'm not raising kids, the grace of two hours automatically.

00:04:45.839 --> 00:04:54.959
And that's because my brain is like uh an old, you know, um an old Windows computer from like 1990.

00:04:55.920 --> 00:05:00.160
It takes all the different processes starting up take time.

00:05:00.399 --> 00:05:00.800
Yeah.

00:05:01.040 --> 00:05:10.079
And I I call it it's giving myself grace, understanding that don't make me make decisions in that first two hours.

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Don't make me converse in those first two hours because I'm just trying to get everything online.

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And if I do, you know, I could be angry, I could be curt, I could make a decision that I'm really gonna regret in in an hour and a half when I think about it.

00:05:27.040 --> 00:05:32.000
So yeah, I try um if I have like a 7 a.m.

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uh start for an event, I'm way up four or five.

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And that's just to get my brain going.

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Yeah, I mean it I need that time too.

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I absolutely need that time.

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I'm homeschooling one of my kids who also has um quite a few differences, and he has, I'm sure he's gonna end up with the diagnosis as well.

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He's next to go to the clinic, um, but he can't handle all the noises and the social stuff and everything.

00:06:05.360 --> 00:06:14.720
It's just a lot, and he is done, he's spent within an hour of being anywhere, so we um keep him pretty close.

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And he's nine, but yeah, I mean, it's it's really difficult for him as well to um to do life, and so uh we have quite the routine.

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We have a routine, and routine is very important to us.

00:06:31.279 --> 00:06:33.839
But like you were saying, you need that morning time.

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I know when I need to get up to get my other son off to school to be able to work with my one son that I'm homeschooling, and I need that time.

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I know what I need in order to start a productive day, to be productive with him.

00:06:52.480 --> 00:06:54.079
It works for the kids too.

00:06:54.240 --> 00:06:56.720
I had a parent that I suggested that to.

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Her kids were um just fighting and melting down two boys around the same age going to school and getting them up early and just allowing them some quiet time each by themselves, it improved things immensely.

00:07:10.879 --> 00:07:15.279
And it also helped them in school because they weren't coming to school fighting with their brother.

00:07:15.920 --> 00:07:17.439
Did you have meltdowns?

00:07:18.560 --> 00:07:19.920
I wasn't allowed.

00:07:21.279 --> 00:07:24.000
Okay, if that makes any sense.

00:07:24.160 --> 00:07:37.680
Um yeah, and also because of the life with my mother, I had I had to take on a caretaker role many times for my two younger sisters.

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So I didn't have the luxury if I melted down, we didn't have breakfast or nobody made lunch.

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So um, in those moments, I just had to learn to buckle down and uh yeah, I'd have my meltdown later.

00:07:54.399 --> 00:07:56.560
I'd go jump on trains to go to school.

00:07:56.720 --> 00:08:01.920
I used to run across the top of the boxcars back when they had the the running boards on the roofs.

00:08:02.079 --> 00:08:03.519
It's a long time ago.

00:08:03.759 --> 00:08:06.879
First time I got arrested, I was seven years old.

00:08:07.040 --> 00:08:10.000
I was running on a train and the cops caught me.

00:08:10.800 --> 00:08:12.000
You know what though?

00:08:12.160 --> 00:08:15.600
You you just proved something about who we are.

00:08:16.079 --> 00:08:24.639
What comes along a lot of times with FASD is also what we talked about very early, the trauma part of it.

00:08:24.879 --> 00:08:27.759
But I also had to take care of my mom.

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My dad had passed away, and she was my adopted mom, and I had to take care of her.

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I felt that I had to take care of her and my sister, who ended up giving, you know, being put back into the system.

00:08:42.000 --> 00:08:57.039
There is so much that comes along with just the fact that we were either adopted or put in other homes or that we have to take care of the people who should be taking care of us.

00:08:57.279 --> 00:09:03.679
There's so many layers that are there that are at and that we can do it.

00:09:03.840 --> 00:09:09.120
I mean, we're placed in situations that really are above us.

00:09:09.360 --> 00:09:15.759
It's hard for our brains to even do those things, but yet we're figuring it out.

00:09:15.919 --> 00:09:27.279
We had to figure it out really, really young, because the people who were supposed to be the stability in the home, they weren't the stability in the home.

00:09:27.519 --> 00:09:37.279
So you take our FASD brain, and we're the ones having to step up to be the caretakers, to be the strong ones, to be the resilient ones.

00:09:37.519 --> 00:09:42.559
And I think that that does carry on into who we become as adults.

00:09:43.120 --> 00:09:50.000
Oh, however, when I was in a safer environment, I would rage.

00:09:50.159 --> 00:09:52.639
I wouldn't just melt down, I would have rage.

00:09:52.960 --> 00:10:00.960
See, and you know, I think back, that was more than just what was going on in the moment.

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That was everything coming out, just this toxic slut and uh that busted doors, um, furniture, and the thing that was most telling was the stuff that I destroyed that I actively went after was mine.

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Wasn't other people's stuff.

00:10:22.399 --> 00:10:24.080
I hurt myself.

00:10:24.559 --> 00:10:25.840
Yes, you hurt yourself.

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That later told me that I was blaming myself for who I was.

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Like, I don't deserve to have this nice toy.

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Smash kind of thing.

00:10:35.279 --> 00:10:40.960
Wasn't what I was thinking at the time, but looking back, I never hurt other people's stuff.

00:10:41.440 --> 00:10:42.639
Not intentionally.

00:10:42.879 --> 00:10:48.639
Occasionally there'd be collateral damage, you'd smash out the door and a piece of wood flies and breaks a cup or something.

00:10:49.039 --> 00:10:53.600
That would be but yeah, what I was doing was I was hurting myself.

00:10:54.320 --> 00:11:00.240
How long did it take you to be okay with who you were?

00:11:01.440 --> 00:11:05.440
It was after my diagnosis when I was told I could forgive myself.

00:11:05.600 --> 00:11:07.679
Up until that point, I just drove myself.

00:11:07.759 --> 00:11:13.679
I just wanted, you know, to end this this mortal toil kind of thing and just get it over with.

00:11:13.759 --> 00:11:16.000
I wasn't gonna take any active steps.

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I was a successful photographer, had many relationships, but they only went so far because I couldn't open up.

00:11:23.840 --> 00:11:27.440
The scariest thing anyone can ever say to me is I love you.

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Because when I was a kid, the people who said I love you were really saying, I'm gonna hurt you.

00:11:34.559 --> 00:11:35.440
I lived it actually.

00:11:36.559 --> 00:11:38.639
I had to unlearn all of that.

00:11:38.879 --> 00:11:39.519
Yes.

00:11:41.519 --> 00:11:42.399
That's what I'm saying.

00:11:42.639 --> 00:11:54.720
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 to take care of me, plain and simple.

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She didn't want me.

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And there's all these different things that go along with that.

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Now, my son, and you know, I'm trying really hard not to tell too much of his story, but I can say that he is very angry, but he's also only 12.

00:12:10.559 --> 00:12:13.600
So he has a long time to work through it.

00:12:13.759 --> 00:12:18.159
And he just found out, because you know, that's another thing.

00:12:18.399 --> 00:12:27.279
How honest should you be with a child who's working through and finds out, well, what is FASD?

00:12:27.440 --> 00:12:28.720
What does that mean?

00:12:28.960 --> 00:12:45.279
And so, you know, we have tried to say things in a very simplistic way, uh, which uh doesn't really offer a lot of blame anywhere, but he's very angry and that this is his brain.

00:12:46.080 --> 00:13:00.480
So, you know, I find it interesting that, you know, what what do you how do you present this to somebody finding out for the first time, young or old, and it of course it would be different um how you present.

00:13:02.720 --> 00:13:12.320
Um especially with uh someone of that age, we have to take into account a thing like called dismaturity.

00:13:13.679 --> 00:13:17.679
And that means different brain domains develop at different rates.

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So cognitive understanding may be way different than say uh actual physical age or executive function levels.

00:13:26.240 --> 00:13:28.080
All of these things are different.

00:13:28.559 --> 00:13:39.440
Um so understand we need to understand first off where the person is emotionally and cognitively, and how they can take in that information.

00:13:39.679 --> 00:13:39.840
Right.

00:13:40.159 --> 00:13:46.720
So it may start with um something happened and your brain is different.

00:13:47.200 --> 00:13:52.720
And then you just leave it, and then when the question comes, why is my brain different?

00:13:52.879 --> 00:14:16.799
Then you can start to talk about introduction of alcohol, explain that you know, pregnancies aren't you know things with bright shining lights and women don't always know, and things like that, and sort of bring the understanding along step by step as the child asks, because we don't want to overload them, we don't want to trauma dump on our children either.

00:14:17.039 --> 00:14:17.279
Right.

00:14:17.440 --> 00:14:30.960
So we want to keep the information in little nuggets that they can use, and you know they will process it and they'll probably have more questions, and then you can add another little nugget to it, and that way you can get a more holistic understanding.

00:14:31.120 --> 00:14:33.840
Um, something happened to both my mom and I.

00:14:35.120 --> 00:14:38.320
Okay, but if they're asking, you should answer.

00:14:38.559 --> 00:14:48.480
Yes, absolutely, absolutely, but you don't want to overload them with information or a lot of emotional baggage.

00:14:48.639 --> 00:14:58.879
Uh, we all have our biases, and we may be angry at uh the woman who's the parent, but we cannot pass that on to the child.

00:14:59.120 --> 00:15:16.000
We need to because one of the worst things that he can do is is you know, sort of try and attack a mother-child bond, and that's the way it would be interpreted, and then the child is not going to be open to the information because they think it's going to be an attack on them and their mom.

00:15:16.159 --> 00:15:34.399
So again, um, we try to keep the information as age-appropriate and in small enough chunks that they can digest it bit by bit, and we can eventually get to the point where we're discussing alcohol usage and how mistakes happen and things like that.

00:15:34.559 --> 00:15:35.759
It wasn't intentional.

00:15:36.320 --> 00:15:36.720
Yeah.

00:15:36.960 --> 00:15:55.200
And you also uh the chronological age of a child doesn't mean anything with somebody who has fetal alcohol um because uh for sure there's regression and their chronological age and their emotional age is completely different.

00:15:55.519 --> 00:15:56.720
Completely different.

00:15:57.200 --> 00:16:03.360
And I I know that it was for me, and I I still feel like I'm half my age.

00:16:03.519 --> 00:16:10.799
They were told, I was told when I was younger that you know I probably was about half my age.

00:16:10.960 --> 00:16:15.519
So when I was like 16, I was like an eight-year-old and things like that.

00:16:15.840 --> 00:16:21.120
And I I I still feel a lot younger than I really am.

00:16:22.639 --> 00:16:23.679
Oh, me too.

00:16:23.840 --> 00:16:24.320
Me too.

00:16:24.480 --> 00:16:27.360
Um, like I still laugh at poop jokes.

00:16:28.480 --> 00:16:32.000
I do too, but they you know, it's a duty.

00:16:32.159 --> 00:16:33.759
We have to laugh at those.

00:16:34.480 --> 00:16:35.279
Exactly.

00:16:35.600 --> 00:16:39.279
Exactly, and that doesn't necessarily ever leave leave us.

00:16:39.440 --> 00:16:44.000
It's not fake, it's you know, part of our personality, it's our dismaturity.

00:16:44.159 --> 00:16:50.559
If you look at uh like maturity, immaturity, that's a blanket, that's all of your functions, all of your brain domains.

00:16:50.960 --> 00:16:56.720
But dismaturity is like uh it's like a mountain range of highs and lows.

00:16:56.960 --> 00:16:58.559
Okay, talk about that though.

00:16:58.799 --> 00:17:01.360
What exactly is dysmaturity?

00:17:01.679 --> 00:17:08.880
We have about 10 different brain domains, which are areas of function in our brain.

00:17:09.279 --> 00:17:22.400
Um like executive function, making decisions, um uh knowing that if I'm gonna catch a bus, I have to leave at this time, um, planning things like that.

00:17:22.559 --> 00:17:26.720
Um, cognitive function is uh is a brain domain.

00:17:26.880 --> 00:17:34.720
It's your understanding, your ability to communicate, you take that information in and utilize it properly or in a good way.

00:17:34.960 --> 00:17:37.279
Also, not words.

00:17:37.519 --> 00:17:47.920
Um and all of these different domains coupled with chronological age, which is you know basically where we're all judged.

00:17:48.000 --> 00:17:51.359
If you look like you're an adult, people are gonna treat you like an adult.

00:17:51.599 --> 00:17:58.400
Although what they can see is you might have a cognitive age of, like you were saying, uh, 15, 14.

00:17:58.640 --> 00:18:04.799
Your emotional age, how you react emotionally, could be eight or ten.

00:18:05.440 --> 00:18:18.319
So part of the diagnosed diagnostic process often identifies these through the Vineland uh adaptive scale and a number of other tests that that are part of the diagnostic system.

00:18:19.440 --> 00:18:24.640
We're able to better judge like where the different levels would be.

00:18:24.720 --> 00:18:27.279
And I really wish I had the full list in front of me.

00:18:27.359 --> 00:18:32.400
It's it's really fascinating, and it really helps when you're trying to look at brain function.

00:18:32.960 --> 00:18:41.359
Okay, I'm I'm talking to someone who physically is 18, but I know cognitively they're understanding me on the level of 12 years.

00:18:42.079 --> 00:18:51.359
So for me to communicate effectively to that person, you don't want to talk down to them, but you definitely don't want to talk over their heads either.

00:18:51.680 --> 00:18:54.160
The the tough part of it is their peers.

00:18:54.559 --> 00:19:18.160
And because they don't understand, and my kids look pretty typical, um, even though we have a mix of um the FASD came with the George syndrome, um, which the George, I don't, it's like a deleted chromosome, the 22nd chromosome, and it oftentimes does come with fetal alcohol.

00:19:18.480 --> 00:19:23.680
And when in it also, you know, there's the autism and ADHD.

00:19:24.000 --> 00:19:29.039
And um, on top of it, I also those are my kids.

00:19:29.119 --> 00:19:37.839
And then on top of it, I also had um the working memory and uh the cognitive stuff as and they do too.

00:19:38.079 --> 00:19:49.759
And the eye, I had um like no-depth perception, and my um eyes don't converge, they don't see together.

00:19:50.079 --> 00:20:01.039
So I always saw two of everything, which then my brain was really kind and only allows my right side to work, and they kind of work together a little bit.

00:20:01.440 --> 00:20:04.400
The brain is kind and it figures it out, you know.

00:20:04.640 --> 00:20:14.400
But it's it's really interesting when you have this A-Z bunch of stuff all falling under what alcohol did.

00:20:14.880 --> 00:20:27.920
Research done at the University of British Columbia has identified 428 comorbidities that come with FASD.

00:20:28.480 --> 00:20:29.119
Yes.

00:20:29.920 --> 00:20:54.799
Comorbidities are associated um effects, and that can range from physical things like heart defects or um, you know, a lung, obviously the cognitive and the CNS difficulties, short stature, uh, small size, all of these things are being noticed that are caused by alcohol.

00:20:55.039 --> 00:20:55.279
Yeah.

00:20:55.440 --> 00:21:00.559
So I mean, it it does, it it deeply affects so many different systems.

00:21:00.960 --> 00:21:05.200
So I have a presentation I've been giving, I've rewritten it, I think, three times now.

00:21:05.359 --> 00:21:06.960
It's called It's Complicated.

00:21:07.119 --> 00:21:10.799
FASD, it's complicated because it really is.

00:21:11.279 --> 00:21:14.960
It's you know, you don't have to learn everything about FASD.

00:21:15.039 --> 00:21:16.000
That's that's the good thing.

00:21:16.079 --> 00:21:21.359
You just need to learn about your FASD, where you're affected, and you know, we can take that.

00:21:21.519 --> 00:21:27.920
But it's unfortunate that we have to do that, and we have to teach ourselves at this point in a lot of cases.

00:21:28.720 --> 00:21:29.200
Yeah.

00:21:29.440 --> 00:21:38.240
Well, the clinic actually broke it down pretty well for the school, and I really appreciated that.

00:21:38.400 --> 00:21:46.079
They they broke everything down, they told them what to expect, even though you're looking at a 12-year-old, this is who he really is.

00:21:46.400 --> 00:21:57.680
And I I appreciate that because you know, um, lots of times they think that the parent doesn't really understand, even though I really do.

00:21:58.960 --> 00:22:01.920
And and anyway, that's fine.

00:22:02.079 --> 00:22:03.119
They can have that.

00:22:03.279 --> 00:22:25.519
But then when the doctor, doctors, big top neurological people um come out and say, this is what it is, you know, then and and I think that not just I don't know where Canadian schools are with this, but I do know that the US schools have not really gotten a hold of this yet.

00:22:26.240 --> 00:22:30.160
Um, we're seeing a lot more education.

00:22:30.400 --> 00:22:36.400
I think we still need a long ways to go in the general education system.

00:22:37.359 --> 00:22:48.559
But it's slowly starting to happen that um it's filtering down to uh understanding different learning styles, even and things like that.

00:22:49.359 --> 00:23:01.119
Some of us learn by doing, some of us can learn by being told, some of us can learn by watching, some of us can just read something and put it together in our mind and be able to do it, but not all of us.

00:23:01.279 --> 00:23:03.839
I have I learn experientially.

00:23:04.079 --> 00:23:09.680
I have to screw it up, do it wrong the first time, and then I can do it right.

00:23:10.319 --> 00:23:13.440
And that was a frustration I've always had to live with.

00:23:13.599 --> 00:23:18.240
You know, if if to open the door, you gotta turn it right, I will always turn left first.

00:23:18.400 --> 00:23:21.759
And I just I I've had to understand and accept that.

00:23:21.920 --> 00:23:25.920
That I, you know, I I screw up the first time every time.

00:23:26.480 --> 00:23:27.680
Me too.

00:23:28.880 --> 00:23:32.079
You know, it's just something Oh, I know it doesn't turn that way.

00:23:32.160 --> 00:23:33.599
Why do I keep trying?

00:23:33.759 --> 00:23:34.480
But I do.

00:23:34.720 --> 00:23:37.920
Yes, yes, and it's not intentional.

00:23:38.079 --> 00:23:38.799
That's a thing.

00:23:39.039 --> 00:23:39.440
Nope.

00:23:39.680 --> 00:23:40.000
Nope.

00:23:40.160 --> 00:23:41.920
It's just the way my brain works.

00:23:42.160 --> 00:23:50.079
My my hand's gonna twist both ways, and that's really what it is, is I'm just twisting both ways, but of course I know one way doesn't work.

00:23:50.559 --> 00:23:51.839
It doesn't stop me.

00:23:52.160 --> 00:23:56.160
Do you love do you love yourself right where you are in life?

00:23:56.400 --> 00:23:57.920
Uh strangely enough, yeah.

00:23:58.000 --> 00:24:02.160
I'm I've always think I've always been my own biggest fan.

00:24:02.400 --> 00:24:15.119
I hate to say that, but I've always been a cheerleader that I've sort of, I don't know, maybe it's I'm a little bonkers or something, but I haven't seen myself the way other people have seen me.

00:24:15.440 --> 00:24:23.119
Because I've seen the totality, I know what I've had to do to get where I am and to do the things that I have to do.

00:24:23.200 --> 00:24:28.079
Like you were talking about going to school, the amount of work that I had to do.

00:24:28.480 --> 00:24:34.000
So even though to other people that might not be a big thing, to me, that was like, yeah, that's an accomplishment.

00:24:34.079 --> 00:24:35.359
I can I can wear that.

00:24:35.519 --> 00:24:37.279
But look at you now, RJ.

00:24:37.680 --> 00:24:39.920
Look at you going all around the place.

00:24:40.000 --> 00:24:45.359
You're like an FASD ambassador, you are FASD famous, you know.

00:24:45.599 --> 00:24:47.119
I mean, you really are.

00:24:47.839 --> 00:24:51.920
And it's amazing what you have accomplished.

00:24:52.160 --> 00:24:52.720
Yeah.

00:24:53.039 --> 00:24:55.599
Yeah, it it kind of blows my mind.

00:24:55.839 --> 00:25:00.000
Um it's, I don't know, joy of acceptance.

00:25:00.160 --> 00:25:04.400
People can see that, you know, it's never gonna be perfect.

00:25:04.559 --> 00:25:07.759
Nobody's life is, whether they have FASD or not.

00:25:07.920 --> 00:25:12.799
And life is what you make it, is the way I am.

00:25:14.240 --> 00:25:18.000
You know, I struggled forever and ever, and I'm going through a good patch.

00:25:18.160 --> 00:25:20.480
It's the way I look at it because I know nothing is permanent.

00:25:20.559 --> 00:25:26.000
As I was saying, I could be homeless tomorrow, but right now I'm a very happy guy.

00:25:26.079 --> 00:25:27.759
And yes, I like me.

00:25:29.519 --> 00:25:33.839
What made you want to take your life and everything?

00:25:34.000 --> 00:25:37.759
And this podcast is always about turning uh pain into purpose.

00:25:38.000 --> 00:25:44.240
What made you want to do that and actually become an advocate for this and help others?

00:25:45.039 --> 00:25:46.000
I don't know.

00:25:46.240 --> 00:25:47.200
I don't know.

00:25:47.839 --> 00:25:49.039
It just happened?

00:25:49.359 --> 00:25:52.079
It was uh a drive.

00:25:52.240 --> 00:26:08.319
Um, when I first started to research about FASD when I got my diagnosis, up until that point, I had ignored everything about it because I'd had so many diagnoses over the year, I had an alphabet soup behind my name of all these different diagnoses that I supposedly had.

00:26:08.559 --> 00:26:10.640
So this is just another one.

00:26:10.880 --> 00:26:18.240
However, when I did get it, and after um I was told it wasn't my fault, I had to go figure out what it was.

00:26:18.640 --> 00:26:22.319
And the stuff I saw online was horrifying.

00:26:22.559 --> 00:26:33.839
They'll never uh be able to live on their own, they'll be in jail, they'll all be drug addicts, the girls are loose, and the guys are addicted, and blah, blah, blah, blah, blah.

00:26:34.640 --> 00:26:38.559
And it wasn't only opinions.

00:26:38.799 --> 00:26:45.119
I was seeing professionals who were telling people, well, there's not much you can do for them.

00:26:45.359 --> 00:26:59.759
Put them in an institution or good housing, and that's about that just it made me angry because I knew that was not a reality that I had to do.

00:27:00.559 --> 00:27:06.240
I had been a successful photographer for a national TV network.

00:27:06.480 --> 00:27:07.759
I'd done that for years.

00:27:07.920 --> 00:27:12.319
I was able to hold a job, I was able to have relationships, I have two kids.

00:27:13.359 --> 00:27:16.960
It did not represent me as a person with FASD at all.

00:27:17.200 --> 00:27:20.000
So um I have a hungry spirit.

00:27:20.160 --> 00:27:21.920
I had to learn more and I had to learn more.

00:27:22.000 --> 00:27:27.599
And the more I learned, I began to see how wrong that talk-down view of us was.

00:27:27.839 --> 00:27:30.559
And yeah, I had to speak out.

00:27:30.720 --> 00:27:36.880
I started stomping around in my red shoes and saying, Hey, you guys, it ain't so.

00:27:37.839 --> 00:27:44.720
Luckily, um, Jody Culp in the States saw that and she asked me why I was doing this.

00:27:44.799 --> 00:27:48.079
And I told her because, and she liked it.

00:27:48.240 --> 00:28:01.440
She thought that would be something that people could, you know, grab onto in their own lives and take that movement, that idea forward that we're being misrepresented, that we are fantastic people.

00:28:01.680 --> 00:28:10.480
We have a lot of talents, a lot of stuff we think that we can go and we change the world just even by thinking differently.

00:28:10.720 --> 00:28:12.799
Everyone in the box says, go left.

00:28:12.960 --> 00:28:16.160
We say, let's take a look at what's on the right, maybe.

00:28:16.400 --> 00:28:18.319
Might see something different.

00:28:18.640 --> 00:28:19.119
Yeah.

00:28:19.359 --> 00:28:26.400
Well, whenever I hear that I can't, because they did tell me, you know, you're not gonna graduate high school, you know, all these other things.

00:28:26.720 --> 00:28:31.440
And I just had this spirit in me that said, Well, yes, I am.

00:28:31.599 --> 00:28:34.400
You know, they said I wouldn't be able to hit a ball.

00:28:34.480 --> 00:28:36.319
I got one or two home runs.

00:28:36.480 --> 00:28:38.400
Uh, they said I wouldn't be able to ride a bike.

00:28:38.480 --> 00:28:40.480
I rode a unicycle and a parade.

00:28:40.720 --> 00:28:42.319
I was determined.

00:28:42.480 --> 00:28:43.680
I'm like, not a bike.

00:28:43.839 --> 00:28:45.519
Okay, give me one wheel.

00:28:45.759 --> 00:28:50.400
So that's just the way that I operate, and I still do today.

00:28:50.880 --> 00:28:56.960
So what I do want to hear though, more about I see the red shoe behind you.

00:28:57.680 --> 00:28:59.920
Tell me about red shoes rock.

00:29:00.400 --> 00:29:06.960
Um well, the red shoes, they were a personal statement.

00:29:07.759 --> 00:29:16.079
Um, when I started speaking publicly, I took the armor of the people who had always kept me down.

00:29:16.240 --> 00:29:20.400
I put on a suit and a nice tie and everything like that.

00:29:20.960 --> 00:29:33.680
But I put the red shoes on because I'm subversive as because you know I was taking their power clothes and using it for my own and keeping true to myself.

00:29:34.000 --> 00:29:45.039
Now, theoretically, if you do something wrong or something that's not acceptable, you are then given a nice healthy dose of shame.

00:29:45.279 --> 00:29:47.519
When I get shame, I look down.

00:29:48.720 --> 00:29:53.039
I look down and I see those red shoes, and I know that is not warranted.

00:29:53.279 --> 00:29:55.759
I look up, I've got fire in my eyes.

00:29:55.920 --> 00:29:58.000
Come on, guys, let's go.

00:29:58.480 --> 00:29:59.839
And that's where the conversation.

00:30:00.640 --> 00:30:01.119
Begins.

00:30:01.359 --> 00:30:08.240
For me, it was something because I didn't have someone, a support person or anyone like that.

00:30:08.480 --> 00:30:18.799
I um largely with the help of friends, started, you know, I I basically bankrolled my first public speech myself.

00:30:18.960 --> 00:30:20.079
I paid for it.

00:30:20.400 --> 00:30:25.920
We got a church basement for free kind of thing, and we invited people and the place sold out.

00:30:26.160 --> 00:30:27.440
It was amazing.

00:30:27.920 --> 00:30:36.640
So just getting those shoes and having them wearing them with a suit, which is still gets a lot of looks.

00:30:36.720 --> 00:30:40.319
Like when you're in the downtown financial district, and all these other guys are all dressed up.

00:30:40.400 --> 00:30:42.319
And they look down and they see these silly runners.

00:30:42.480 --> 00:30:44.640
They're like, oh, one of them, huh?

00:30:44.799 --> 00:30:45.200
Yeah.

00:30:45.680 --> 00:30:46.640
The original.

00:30:48.319 --> 00:30:48.960
I love it.

00:30:49.039 --> 00:30:51.359
I still wear my Converse all the time.

00:30:51.519 --> 00:30:52.720
That's just who I am.

00:30:54.640 --> 00:30:56.480
Yeah, oh, for sure.

00:30:56.720 --> 00:31:02.000
And the the Red Shoes is it really represents who you are.

00:31:02.079 --> 00:31:04.400
It represents your personality and everything.

00:31:04.799 --> 00:31:05.759
I love it.

00:31:06.960 --> 00:31:08.160
Let's go out and get them.

00:31:08.799 --> 00:31:12.319
Do you know how how big is Red Shoes um rocks?

00:31:12.400 --> 00:31:14.480
I mean it's it's pretty big.

00:31:15.440 --> 00:31:17.599
It is definitely international.

00:31:17.839 --> 00:31:23.359
Um it's huge in areas like uh Australia and New Zealand.

00:31:23.920 --> 00:31:26.880
Um we have a book.

00:31:27.119 --> 00:31:28.079
Oh my god.

00:31:28.799 --> 00:31:33.839
Do you know about about our the book from Germany?

00:31:34.400 --> 00:31:34.720
No.

00:31:35.200 --> 00:31:35.680
I don't.

00:31:35.920 --> 00:31:36.079
Okay.

00:31:36.559 --> 00:31:38.720
I have so many neat things going on.

00:31:39.359 --> 00:31:40.160
Oh my gosh.

00:31:40.400 --> 00:31:40.640
Okay.

00:31:41.440 --> 00:31:43.200
Woman in Germany wrote this.

00:31:43.519 --> 00:31:46.240
It's all about red shoes.

00:31:47.440 --> 00:31:50.640
And it's called the Red Shoes of the Wandering Mouse.

00:31:51.440 --> 00:31:53.200
Is it in is it in English?

00:31:53.920 --> 00:31:54.400
Yes.

00:31:54.640 --> 00:31:56.640
This is an English translation.

00:31:57.279 --> 00:32:03.519
And it tells the story of a mouse who uh found some red shoes in the adventures of this mouse.

00:32:03.759 --> 00:32:11.599
Now, what's really neat about it is it's not based on me specifically.

00:32:12.799 --> 00:32:15.359
Oh, I like that red shoes though.

00:32:15.759 --> 00:32:16.400
Yes.

00:32:17.680 --> 00:32:21.519
But um the author did reach out to me.

00:32:21.759 --> 00:32:25.119
Have you ever seen the the picture of me hanging out of a tree?

00:32:25.359 --> 00:32:26.160
I think so.

00:32:26.400 --> 00:32:27.359
I think so.

00:32:27.839 --> 00:32:28.960
So did she.

00:32:29.920 --> 00:32:31.759
Oh my gosh.

00:32:34.559 --> 00:32:38.640
So what is what is the name of the of the character in there?

00:32:38.720 --> 00:32:39.680
What what is the name?

00:32:39.920 --> 00:32:41.759
It's a mouse and a hedgehog.

00:32:42.400 --> 00:32:45.119
So um it's the wandering mouse.

00:32:45.279 --> 00:32:45.920
The red shoes are.

00:32:46.079 --> 00:32:48.319
Does it have anything to do with FASD?

00:32:48.880 --> 00:32:49.839
Oh, absolutely.

00:32:50.000 --> 00:32:58.480
In fact, a whole section on why red shoes, all about me, and why I started.

00:32:59.599 --> 00:33:03.519
Oh my gosh, RJ, that is so amazing.

00:33:04.720 --> 00:33:08.319
And it even ends with a little picture of me in there.

00:33:08.559 --> 00:33:11.200
Do you know what that picture of you reminds me of?

00:33:11.519 --> 00:33:12.400
What's that?

00:33:13.759 --> 00:33:15.440
Oh, what were we called?

00:33:15.680 --> 00:33:16.720
I don't know.

00:33:17.599 --> 00:33:23.920
Our initial, our uh initial podcast, if that's what you want to call it.

00:33:24.079 --> 00:33:28.640
Where and and you were Swiss Cheese Brain Effect?

00:33:28.799 --> 00:33:30.799
The Swiss Cheese Brain Effect.

00:33:30.960 --> 00:33:31.440
Yes.

00:33:31.839 --> 00:33:37.359
Or how I learned to live with FSD, I think, was roughly.

00:33:37.599 --> 00:33:40.400
It had a super huge, long title.

00:33:40.640 --> 00:33:42.319
Yeah, it did, but it was super fun.

00:33:42.400 --> 00:33:43.920
And you had that coat.

00:33:44.160 --> 00:33:53.359
We used that like figure to go along with our little uh Facebook group that we had, and then we started the Yeah.

00:33:53.440 --> 00:33:55.680
I mean, I think that that's so fun.

00:33:56.240 --> 00:34:03.039
Do you see how huge you are, what you've created, how huge this movement is?

00:34:03.359 --> 00:34:05.519
Yeah, it's it's extremely humbling.

00:34:05.680 --> 00:34:09.199
Um, I love what people have done with it.

00:34:09.440 --> 00:34:13.360
And um sometimes it's like, who is that guy?

00:34:13.519 --> 00:34:14.079
Who did it?

00:34:14.239 --> 00:34:16.480
It's just like, wow, that can't be me.

00:34:16.639 --> 00:34:23.679
Sometimes I have to give my my my head a shake and go, yeah, I have some value in the world.

00:34:23.840 --> 00:34:24.480
Who knew?

00:34:24.800 --> 00:34:25.440
Oh my.

00:34:25.599 --> 00:34:37.599
You know, you were put here on this planet for a reason, and that's what I really want people with FASD to understand is that we were put here for a reason.

00:34:37.840 --> 00:34:51.840
We have a purpose, and don't ever let a definition or a diagnosis define who you are and make you feel less than or that you're not capable of.

00:34:52.239 --> 00:34:57.679
Because look at us, we both have that same diagnosis.

00:34:57.920 --> 00:35:06.480
We were both told all the negatives, but look at us, look what we've been able to accomplish.

00:35:06.719 --> 00:35:09.199
I think that that's so amazing.

00:35:09.760 --> 00:35:14.400
I am really proud of you and how far that you've come, RJ.

00:35:14.960 --> 00:35:17.360
Right back at you, Mustang, Annie.

00:35:18.880 --> 00:35:22.639
See, see, that's that was yes.

00:35:22.960 --> 00:35:25.360
See, we've always been really good together.

00:35:25.599 --> 00:35:28.639
Uh oh, you and your red Mustang, classic.

00:35:30.320 --> 00:35:41.199
Which because I am a soccer mom now, I have a soccer van that seven people.

00:35:42.559 --> 00:35:43.840
This is not me.

00:35:44.239 --> 00:35:56.960
I refuse to identify as like any kind of a soccer mom driving a van, but I am still Mustang Annie riding in this van.

00:35:57.119 --> 00:35:58.480
I am still that person.

00:35:59.599 --> 00:36:00.400
Exactly.

00:36:00.639 --> 00:36:01.519
Exactly.

00:36:02.320 --> 00:36:07.199
So, what do you want people to know about FASD?

00:36:07.679 --> 00:36:13.519
Like, what what how can you help people who have FASD?

00:36:13.679 --> 00:36:15.840
What do you want them to know, RJ?

00:36:16.480 --> 00:36:17.920
It's not your fault.

00:36:24.800 --> 00:36:31.920
It's the creator gave us all individually challenges, um, some more than others.

00:36:32.480 --> 00:36:46.480
However, I also believe that with the challenges come gifts that are unique, and it's taking us sometimes a while to find them because they might be hidden.

00:36:47.119 --> 00:36:54.639
But when we're able to go with talents and follow those roads, and the gifts can become apparent.

00:36:55.119 --> 00:37:11.360
So um yeah, it's not about the diagnosis, there's a whole lot more going on, and you have gifts that at this point you might not even be able to imagine, but just grow with it, give it some time.

00:37:11.599 --> 00:37:16.719
Brains develop at a different pace for people with FASD.

00:37:16.880 --> 00:37:21.360
So often we don't even hit our stride until we're in our 40s.

00:37:22.239 --> 00:37:23.360
Oh, do you know?

00:37:23.440 --> 00:37:31.360
That's really interesting that you say that because I feel more capable now than I did when I was younger.

00:37:31.679 --> 00:37:45.440
I watch what other people I just feel like I have just become me and able to do the things that I should have been doing in my 30s and 40s that I was not able to do.

00:37:45.679 --> 00:37:47.440
And now I can do them.

00:37:47.679 --> 00:37:49.599
It's so crazy.

00:37:50.400 --> 00:38:00.480
Yeah, that's because um the assumption is by the time you're 30 or neurotypical, your brain-building functional days are pretty well over.

00:38:01.360 --> 00:38:12.719
We're still building brain cells well into our late 40s, apparently, because the human body, the creator is amazing.

00:38:12.880 --> 00:38:18.880
Um, our brains are what we call neuroplastic, plastic meaning malleable.

00:38:19.039 --> 00:38:23.599
So it's often trying to, you know, fix things, as you were talking about earlier.

00:38:23.760 --> 00:38:29.519
The brain can do an amazing job just on its own, trying to make things work.

00:38:30.960 --> 00:38:36.159
Yeah, we found that the trajectory for people with FASD is a lot longer.

00:38:36.400 --> 00:38:41.679
There's actually a catch-up period that has been identified between 30 and 40.

00:38:41.840 --> 00:38:44.480
It's a brain process called myelination.

00:38:45.199 --> 00:38:50.639
Now, imagine um our thought processes as gravel roads.

00:38:50.880 --> 00:38:53.679
We think a little slowly, our processing's a little slow.

00:38:53.840 --> 00:38:59.039
So you got this gravel road, you have another gravel road, another thought process, another thought process.

00:38:59.199 --> 00:39:12.480
What happens with myelination is it's like almost the insulation on a cable grows around these different synapses, binds them together almost like a superhighway.

00:39:12.639 --> 00:39:18.000
And when that happens, there's a fatty subsubstance called myelin that's built into this.

00:39:18.239 --> 00:39:21.840
It speeds up the transmission of thoughts.

00:39:22.079 --> 00:39:23.440
It's a catch-up period.

00:39:23.599 --> 00:39:28.079
Our thinking gets clearer, we're better able to do things and put things together.

00:39:28.159 --> 00:39:31.199
And that generally seems to be happening between 30 and 40.

00:39:31.360 --> 00:39:33.199
Now we need a lot more research on it.

00:39:33.280 --> 00:39:47.039
There's only been minimal work done on it, but I'm very excited about that because I see it constantly with the people I work with daily, that um at a certain point, suddenly things are all starting to click.

00:39:48.559 --> 00:39:51.199
How do you well, first off, I want to say this.

00:39:51.360 --> 00:39:57.199
When I was a kid, I um really wasn't able to put sentences together very well.

00:39:57.920 --> 00:40:00.400
And now I'm doing a podcast.

00:40:00.719 --> 00:40:06.000
It took decades for me to be able to do this.

00:40:06.159 --> 00:40:22.800
I mean, I still have helps with some notes and things like that that I keep in front of me when I interview people, but you know, I never was able to put sentences, paragraphs, and be able to communicate.

00:40:22.960 --> 00:40:29.440
I used to write notes to people and give it to them when I was younger, even in my 20s.

00:40:29.519 --> 00:40:45.119
And I know that people thought that I was really strange, but if I really wanted to say something and be able to convey it in a way that made sense, and and the way I really wanted to say it, I needed to write it down and give it to them.

00:40:45.840 --> 00:40:47.599
Because I trusted that.

00:40:47.920 --> 00:40:54.079
But and I knew I couldn't trust my own mouth to for it to say what I really wanted to.

00:40:54.400 --> 00:40:57.199
But now I'm much better at it.

00:40:57.360 --> 00:41:04.639
It it took that many years for my brain to develop that part of the brain for me to be able to do it.

00:41:05.360 --> 00:41:07.119
Yet you were able to write.

00:41:07.280 --> 00:41:09.679
And now, here's the flip side of that coin.

00:41:09.760 --> 00:41:18.159
It wasn't until I met you and we started discussing these things, and I started to understand that I could write like I talk.

00:41:18.559 --> 00:41:20.400
Because I've always been able to talk.

00:41:20.719 --> 00:41:25.440
Yeah, even till that point, whenever I tried to write, I was pretending to be somebody else.

00:41:25.599 --> 00:41:31.760
It wasn't authentic, it felt I couldn't even stand it.

00:41:31.840 --> 00:41:37.519
I even to this day, I cannot stand reading my old writing because I was trying to be somebody else.

00:41:38.880 --> 00:41:49.199
But through our conversations and everything, I learned from you that it's possible to just talk and use that.

00:41:50.079 --> 00:41:58.239
And that changed everything because now I'm able to talk out what I want to say and I write it down.

00:41:58.880 --> 00:42:04.320
Yeah, just be like the flip side of what you're talking about.

00:42:05.039 --> 00:42:05.519
Mm-hmm.

00:42:06.239 --> 00:42:07.360
That's kind of cool.

00:42:08.320 --> 00:42:11.519
Well, I think that we were meant to meet.

00:42:12.480 --> 00:42:13.679
Absolutely.

00:42:14.320 --> 00:42:25.599
Because I think that we both helped each other get to where we are today, you know, long years ago, but we we really believed in each other.

00:42:25.679 --> 00:42:31.280
And I think that we still really believe in each other, and we will always be each other's cheerleaders.

00:42:31.519 --> 00:42:45.039
I I'm always like going on and watching everything that you're doing, and I just am so proud of everything that you're doing because I know where you were, and I know where you are.

00:42:45.760 --> 00:42:48.079
I what how many crowds?

00:42:48.400 --> 00:42:50.159
I mean, like, how often do you speak?

00:42:50.239 --> 00:42:53.760
Like, what are the crowd sizes that you speak in front of?

00:42:54.400 --> 00:43:02.639
Oh, I actually tend to like to accept a lot of smaller and medium-sized informants or less.

00:43:02.880 --> 00:43:08.079
Um, um I love doing like a class size, sometimes 20 or 30.

00:43:08.159 --> 00:43:09.519
Those are those are great.

00:43:09.920 --> 00:43:11.760
They're they're very interactive.

00:43:12.000 --> 00:43:15.840
But you know, I I can also talk to a thousand people at the same time.

00:43:16.079 --> 00:43:26.239
So for me, the crowd size isn't so much the big thing as being able to get in intimacy with the crowd.

00:43:27.519 --> 00:43:33.599
Um the the first thing I I tell everyone is number one, if you got it, give me a wireless mic.

00:43:33.760 --> 00:43:36.719
Number two, I'm gonna go away from the podium.

00:43:36.960 --> 00:43:39.440
And then I'm going to walk to the audience.

00:43:39.679 --> 00:43:43.440
If it's a riser or something, I can walk into the audience.

00:43:43.599 --> 00:43:47.599
If I have to go down the stairs and decide that's distracting, I can't do it.

00:43:47.760 --> 00:43:54.159
So a lot of it is dependent on where I am and how it's set up.

00:43:54.400 --> 00:44:02.800
But um, for me, I don't want the prosemium arch, that arch on the stage, to be a separator.

00:44:03.039 --> 00:44:06.159
Because I don't want to be separate from the people I'm talking to.

00:44:06.320 --> 00:44:11.280
If possible, I want to have them around so we can have a circle of patients.

00:44:12.559 --> 00:44:20.400
So for me, uh crowd size isn't a big thing, and I'm lucky that way because I know a lot of people suffer.

00:44:20.559 --> 00:44:26.480
And uh, you also have to remember, I also did a stint on stage as a drummer when I was younger.

00:44:26.559 --> 00:44:27.360
So that's true.

00:44:30.079 --> 00:44:34.480
Um sort of on stage and not even seeing the audience sometimes.

00:44:34.719 --> 00:44:35.760
Yes, yeah.

00:44:36.000 --> 00:44:52.159
And that's uh, you know, I find it really interesting that we use our voice, and and you know, because it was so difficult for us at in parts of our lives to be able to use our voice, and I so I love that that's such um a powerful way that we're using it today.

00:44:52.480 --> 00:44:54.800
Do you consider yourself a life coach?

00:44:54.960 --> 00:44:55.760
Is that what you do?

00:44:55.840 --> 00:44:57.920
Do you work one-on-one with people at all?

00:44:58.159 --> 00:45:03.360
Um, I have mentored people over the years, okay, but I don't coach.

00:45:03.519 --> 00:45:09.679
Coaching is short term, and when I take someone on, it's often for years.

00:45:11.119 --> 00:45:26.559
And um yeah, I have a number of people who through the years I have mentored who have gone on, but we're still in constant contact because I do not want them to feel that support is suddenly cut off.

00:45:26.719 --> 00:45:34.639
The problem with dealing with a lot of professionals is that they'll be there for you one day, but then they get another job in another department and they're gone.

00:45:34.800 --> 00:45:36.800
And that personal lost.

00:45:36.960 --> 00:45:48.880
So for me, anyone that I do work with, which I try to keep to a minimum, obviously, because of all my other work, it becomes a years-long project at that point.

00:45:49.039 --> 00:45:51.360
I don't just, you know, let people go.

00:45:51.440 --> 00:45:58.639
And when they're ready to move on to, you know, other supports and things like that, that's their decision.

00:45:58.880 --> 00:45:59.360
Mm-hmm.

00:46:00.639 --> 00:46:02.239
That's really awesome.

00:46:02.400 --> 00:46:04.079
Um, that you do that.

00:46:04.480 --> 00:46:08.239
Um again, there's no limit to what you're doing.

00:46:08.480 --> 00:46:15.280
How can families and individuals start advocating in their own communities?

00:46:16.079 --> 00:46:23.599
Oh, um, it starts with speaking your own truth, your own experience on how you see things.

00:46:23.679 --> 00:46:39.679
Uh there are a lot of um FASD groups, especially around September, September 9th being International FASD Day, and just going out to an event and talking to the people running the little booths and everything.

00:46:39.920 --> 00:46:51.360
And you can get incredible conversations, you can find out incredible information, and you can also probably start impressing the organizers when they see someone who's interested.

00:46:51.599 --> 00:46:57.199
And then if you have, you know, a story to tell or whatever, that can work into us.

00:46:57.360 --> 00:47:03.760
So often it it starts with um support groups that do public outreach and public events.

00:47:04.079 --> 00:47:04.400
Okay.

00:47:04.719 --> 00:47:07.360
Well, we need more of those in the United States.

00:47:07.519 --> 00:47:09.440
We just really don't have them.

00:47:10.079 --> 00:47:16.480
I I that's the thing that really thrills me the most um at this previous conference I was at.

00:47:16.800 --> 00:47:22.000
There were like 110 people with FASD who were there.

00:47:22.239 --> 00:47:27.119
Advocates, people who work in the system, people, parents, and things like that.

00:47:27.280 --> 00:47:32.480
It was incredible to see this giant wall of advocacy.

00:47:32.719 --> 00:47:40.079
And yeah, I feel really good when I see all these people coming up behind because it was pretty lonely for a long time.

00:47:40.159 --> 00:47:44.880
There were only a few of us who were out there stomping around, going to stage the stage.

00:47:45.119 --> 00:47:52.480
And the most amazing thing about this, all this advocacy, and it's not a competitive arena.

00:47:54.400 --> 00:47:59.280
It's not about who's the best who got more people or whatever.

00:47:59.440 --> 00:48:00.960
We help each other.

00:48:01.760 --> 00:48:06.559
And I've never worked anywhere where we're not competing with each other.

00:48:06.800 --> 00:48:13.440
We're all going for the same cause, and that's you know, to get the proper right information out there so we can help people.

00:48:13.840 --> 00:48:16.559
So we know a lot more now than we did, would you say?

00:48:16.719 --> 00:48:20.719
I mean, is there an impact, would you say, with all the work that you're doing?

00:48:21.280 --> 00:48:22.880
Oh, absolutely, absolutely.

00:48:23.039 --> 00:48:32.079
It's even um how many people have never even discussed the possibility with their or even with their physician?

00:48:32.320 --> 00:48:36.880
Uh one of the big problems that we have are physicians who are not trained.

00:48:37.119 --> 00:48:41.440
And then even worse, we have physicians who are not trained but think they are.

00:48:42.480 --> 00:48:54.320
So yeah, there's there's still a long way to go, and we have a lot of work to do, but changing systems takes time, and you know, we're we're not going anywhere.

00:48:54.480 --> 00:48:57.119
We got all the time in the world to do it, dude.

00:48:57.440 --> 00:48:58.079
Yeah.

00:48:58.480 --> 00:49:07.280
Well, I mean, in the indigenous population, there is a lot of FASD, is it not?

00:49:07.440 --> 00:49:12.400
I mean, and and I don't know where that stemmed from, or maybe that's just a myth.

00:49:12.559 --> 00:49:13.840
I'm not really sure.

00:49:14.000 --> 00:49:14.800
Is that a myth?

00:49:15.039 --> 00:49:18.960
That actually is uh a horrible stigma.

00:49:19.280 --> 00:49:19.599
Okay.

00:49:20.000 --> 00:49:26.320
Um it's more based on the fact that our population size is so small.

00:49:27.280 --> 00:49:27.360
Okay.

00:49:28.800 --> 00:49:47.119
It's not that we're necessarily affected to a greater degree, it's just that um historically people from the dominant society were getting um um um autism diagnoses for the same thing and stuff like that.

00:49:47.280 --> 00:49:57.039
There was a lot of that because obviously there's a factor with an FASD diagnosis a lot of people didn't want to deal with.

00:49:57.920 --> 00:50:08.719
So, but in the native community, it was seen for what it was because the introduction of alcohol has just been within the last 500 years.

00:50:09.039 --> 00:50:11.360
We're better able to gauge that.

00:50:11.679 --> 00:50:14.719
Europeans grew up with it, it's been generational.

00:50:15.119 --> 00:50:23.440
We rarely had you know a few fermented fermented berries or something in the fall would be our alcohol exposure.

00:50:24.880 --> 00:50:34.960
So, and because of that, we're like the canary in the coal mine, and the research was initially done on native people.

00:50:35.440 --> 00:50:46.320
So the story started to be it's a native people problem, but we've since found that it crosses all societal barriers, it crosses all financial barriers.

00:50:46.559 --> 00:50:50.960
FASD is real and it affects everyone, every group.

00:50:51.199 --> 00:50:53.119
Yeah, yeah, it really does.

00:50:53.440 --> 00:51:01.760
Now there are the exceptions, um, say like Amish and other groups that historically do not partake in alcohol.

00:51:01.920 --> 00:51:10.480
However, kids are kids, and things do happen, and no particular group can say there's no FASD.

00:51:10.559 --> 00:51:16.719
I've heard groups say that, and like no, human beings are human beings, they're gonna experiment, things are gonna happen.

00:51:17.119 --> 00:51:21.199
And it's it's so much wider than we could ever put a number on.

00:51:21.280 --> 00:51:29.679
I mean, the statistics that I put out there at the beginning, you know, I I really think that that's just probably a very small percentage of what is really there.

00:51:30.239 --> 00:51:30.719
Mm-hmm.

00:51:31.199 --> 00:51:32.000
Oh, yeah.

00:51:32.239 --> 00:51:43.440
Um I would think that one day we're gonna be looking at 25%, either FASD or fetal alcohol affected.

00:51:44.079 --> 00:51:44.639
Right.

00:51:44.800 --> 00:51:45.119
Okay.

00:51:45.599 --> 00:51:56.000
Because even if like my kids don't have FASD, however, genetically, due to some of the changes in me, that's gonna be carried on through them.

00:51:56.320 --> 00:51:56.639
Okay.

00:51:57.039 --> 00:51:58.239
Is that what that means?

00:51:58.960 --> 00:52:13.039
Yeah, we don't have a lot of real research into that now, and they're they're looking into it in like the epigenetics, not so much that the genes change, but how they express themselves, how they fire off when and where.

00:52:13.199 --> 00:52:16.639
That can change due to alcohol exposure in the parent.

00:52:17.039 --> 00:52:26.719
Okay, so the parent has it, and so then they nobody drank, but they do have effects because the parent had it.

00:52:27.599 --> 00:52:31.760
Some can, and research is indicating it's possible.

00:52:32.400 --> 00:52:34.320
That would be the genetic piece, right?

00:52:34.480 --> 00:52:37.840
I mean, I would think that there would be some genes that would be passed down.

00:52:38.400 --> 00:52:47.280
There is an intergenerational effect, even if there is no alcohol directly indicated, it can come from previous generations.

00:52:47.920 --> 00:52:59.760
So I'm saying it's going to end up being 25% or more because all of these generations back causing genetic effects that we don't yet understand, and one day we will.

00:53:01.599 --> 00:53:04.000
You know, this has been such a great conversation.

00:53:04.159 --> 00:53:07.039
I have so loved having you on.

00:53:07.280 --> 00:53:11.599
I mean, it just I want to do this again.

00:53:11.840 --> 00:53:17.760
I mean, I think that for one, for one thing, we're really good together.

00:53:18.000 --> 00:53:27.840
For another thing, you know, I just don't think that, like I said at the beginning, I just don't think people really understand what this is.

00:53:28.559 --> 00:53:32.239
And you are such an amazing mouthpiece.

00:53:33.119 --> 00:53:36.960
So, how can they contact you?

00:53:37.280 --> 00:53:42.559
Red shoes rock, flying with broken wings, and all the stuff.

00:53:42.880 --> 00:53:43.920
Yep, that's it.

00:53:44.079 --> 00:53:44.960
I'm everywhere.

00:53:45.119 --> 00:53:46.320
It's it's easy to find me.

00:53:46.480 --> 00:53:53.199
Best place, of course, is on Facebook because I monitor, I run the group, and I'm in like an active admin.

00:53:53.360 --> 00:53:57.199
So if you can message me on Facebook, that's usually the quickest way.

00:53:57.519 --> 00:54:02.000
My email is out everywhere, mrstartpointrod at gmail.com.

00:54:02.159 --> 00:54:05.440
Um, I'm easy to get a hold of if you're looking for me.

00:54:05.599 --> 00:54:10.000
And it if it gets really difficult, find someone that knows me.

00:54:10.079 --> 00:54:10.800
They'll send you to me.

00:54:10.880 --> 00:54:11.920
It's easy.

00:54:13.039 --> 00:54:14.239
Yeah, they can find me.

00:54:14.320 --> 00:54:15.360
I can send them to you.

00:54:16.079 --> 00:54:20.639
Everybody does know RJ, or I could say Rod.

00:54:22.079 --> 00:54:22.800
Absolutely.

00:54:22.880 --> 00:54:24.159
You absolutely could.

00:54:25.440 --> 00:54:27.519
Because I know what RJ stands for.

00:54:27.679 --> 00:54:28.400
So do I.

00:54:28.719 --> 00:54:32.400
Any more information about FASD before I close?

00:54:32.559 --> 00:54:34.320
Anything else you want to say?

00:54:34.719 --> 00:54:36.480
Tomorrow's another day.

00:54:36.800 --> 00:54:38.960
Tomorrow is always another day.

00:54:39.039 --> 00:54:43.679
No matter how hard it gets today, tomorrow is another day.

00:54:45.599 --> 00:54:47.679
My thing is look at you.

00:54:47.840 --> 00:54:49.760
Look at RJ Formanac.

00:54:50.000 --> 00:54:52.079
Look at what he's accomplishing.

00:54:52.400 --> 00:55:10.079
I will get off of here today and I will go talk to my kids, and I will show them parts of this, and I will hopefully someday you can meet my kids, you know, over Zoom or something, especially my one son.

00:55:10.239 --> 00:55:20.079
I really want him to meet you because I want him to see look at you, look at what you've accomplished, look how look how successful you are.

00:55:20.320 --> 00:55:28.880
I don't want shame and trauma to define anybody that has FASD.

00:55:30.639 --> 00:55:33.280
I think that that's one of my biggest messages.

00:55:33.519 --> 00:55:34.880
And that you can't.

00:55:35.599 --> 00:55:36.079
Yeah.

00:55:36.320 --> 00:55:37.519
And that you can.

00:55:37.840 --> 00:55:38.480
You can.

00:55:39.440 --> 00:55:42.000
Don't let anybody tell you that you can't.

00:55:42.239 --> 00:55:44.800
We might just need a little bit more time to do it.

00:55:44.960 --> 00:55:48.000
We might just need a little bit more processing time.

00:55:48.320 --> 00:55:53.440
We might be able to just, you know, we might forget and then have to relearn it.

00:55:53.599 --> 00:55:54.719
But you know what?

00:55:55.199 --> 00:55:56.159
We can.

00:55:57.199 --> 00:55:57.760
Yeah.

00:55:58.000 --> 00:56:02.719
All we're asking for is the chance, and we're gonna knock your socks off.

00:56:03.679 --> 00:56:08.880
Well, RJ, thank you so much for being here today and for all that you do.

00:56:09.039 --> 00:56:17.679
You have given so many people, myself included, language, community, and hope for our listeners.

00:56:17.840 --> 00:56:23.920
If you or someone you love is living with FASD, please know that you are not alone.

00:56:24.159 --> 00:56:27.760
There's a whole community out there walking this same path.

00:56:28.000 --> 00:56:38.960
You can find RJ, like we said, on Flying with Broken Wings on Facebook and through Red Shoes Rock, both incredible spaces for awareness, support, and connection.

00:56:39.199 --> 00:56:42.960
And as always, thank you for listening to Real Talk with Tina and Anne.

00:56:43.039 --> 00:56:55.280
You know, hit the like button, subscribe, go to the website, and on our website, you know, you will find a lot of really amazing things because we believe that our differences aren't deficits.

00:56:55.679 --> 00:56:58.559
They are the wings that help us fly.

00:56:58.880 --> 00:57:01.840
So thank you, RJ, for being on today.

00:57:02.000 --> 00:57:03.599
I love you, brother.

00:57:04.239 --> 00:57:05.119
I love you.

00:57:05.280 --> 00:57:06.320
It's been a pleasure.

00:57:06.480 --> 00:57:07.840
Let's do it again.