The Hidden Trauma of FASD with Trailblazer and Overcomer R.J. Formanek Part 1

Speaker 1: 0:10

Welcome to Real Talk. This is Ann. We have a guest today, rj Formanak, or as I could also call him, rod. Tina is with her sick kids today, unfortunately, but I am so thankful he is on today because he is probably one of my most favorite people on the planet. He is absolutely my brother from another mother and we are going to take a pause from our normal show to talk about a very sensitive, important topic to RJ and myself. You know trauma comes at us from many different levels and many different ways. Trauma can affect a person before they are even born. Tina and I have talked about in utero trauma before it is real, and it can shape us before we take our first breath. There are different kinds of trauma, but I think some can be more invisible, some can have more of a stigma attached to them, some can define us more than others. We try not to let any trauma become who we are completely. I thought we could have one of my dearest friends on the planet on our show to talk about a type of in utero trauma RJ Formanak, from Ontario, a place called Thunder Bay by Lake Superior, canada. I mean I guess we let people from Canada on here too. He was born with fetal alcohol spectrum disorder and so was I. Before we start to lose listeners because they might start saying, oh wait a second, this isn't something I really want to hear about. Talk about this. I stay away from this topic. Please stay tuned, because this episode is really going to be worth listening to. Rj and I were a lot younger when we met, and we still stay connected, rj, I can't believe how long we've known each other really.

Speaker 2: 2:22

It's been a while and it's great to talk to you again. We haven't really had a chance to catch up in a long time. You've been very busy.

Speaker 1: 2:30

Yeah, well, so have you. I mean, we're always busy. Of course. I did this stuff like adopt kids and all kinds of different things along these last I don't know when, the last time we stay in touch, but we haven't been working side by side like we used to and I really miss talking with you on a regular basis.

Speaker 2: 2:54

Yeah, those were good days back in the old, when we used to do our podcast, which was really rough, I have to admit, but we had a lot of fun with it and that's sort of the spirit of it.

Speaker 1: 3:06

It carried on for a long time but yeah, I mean, that was the first time that we ever did or I had ever done, anything like that. I mean, I'm not really sure about you, but that was one of the first times that we ever got. I ever got real online or in front of other people so people could hear me talking about real life. Really tough stuff.

Speaker 2: 3:32

It's a far cry from the days of the Swiss cheese brain effect.

Speaker 1: 3:36

Well, I don't know. I thought you knew what you were doing because you had done this. You were in the business.

Speaker 2: 3:46

I mean for life to tape, not edited. Really, we did a really fun. I like we had fun and it worked out.

Speaker 1: 3:54

Yeah, we did. I mean, weirdly, people liked us.

Speaker 2: 4:00

Yeah, it was a real that that takes a certain amount of bravery that a person has to. You have to really buy into it to get to that point where you can open up and not fear the repercussions. So you are an extremely brave woman and you know, I was just thrilled to be working with you. You opened up my eyes to a lot of things and together we explored a lot of really interesting, sometimes scary avenues.

Speaker 1: 4:30

We really helped each other through some tough times, I would say. I mean, when you and I started talking, I don't even think that we ever thought that it would get to where it did, but we went on other people's shows and that's kind of how it started. And then we just talked about fetal alcohol and all the aspects of how trauma affects our lives. And I'll tell you you you were talking about me being real and brave. You are real and brave all the time. I mean, you go all over the place talking about this stuff, but you anyway, you have forged through all the stigma, all the untruths about FESD. You, my brother, are really well known in this cause.

Speaker 2: 5:16

It's just kind of funny. But you know, it's like any other neurodivergency when it's misunderstood, there's a lot of stigma and for a long time, you know, if you said the word autism, people did not understand what that meant. They would get an idea in their head that was often way far from the truth. And the same is true with fetal alcohol spectrum disorder. The stigma is what keeps people from speaking out, and not talking about it causes more pain and more trouble down the road. So what I and a great number of people now I'm super thrilled at the number of people who have taken the steps to speak out and talk about their experience and share it with others, because I'm assuming it would be the same in autism. The people who work with us only see it from the outside, but people like us who are able to communicate clearly can describe to them what it's like from the inside, and that's where you know the real work gets done. So having people going out and speaking and telling their truth is, you know, dispelling a lot of shadows, and that's vitally important when it comes to a neurodivergency Because, like I said, they are so misunderstood by the general public.

Speaker 1: 6:43

Yeah, you know, one of the things that I just and I did remember this, but you corrected me on spectrum versus syndrome, and I'm really glad that they changed it to spectrum because in reality, all disabilities if that's what we also want to call it is, you know, every single one of them is a spectrum. None of us are the same. It all it looks different in everybody.

Speaker 2: 7:09

Absolutely, absolutely so. In the United States, fasd is an umbrella term. It's not diagnostic, but it's an umbrella term and it covers alcohol related neurological deficits, partial FAS and FAS fetal alcohol syndrome. Now you mix all those together, you get something called FASD. In Canada, we have, since 2015, changed our description and our diagnostic process, so now we have FASD with facial features or without, and we've really simplified it. So there's a bit of a discrepancy between countries right now with the diagnostic system that they're working, but you can translate from one to the other and it works out quite well.

Speaker 1: 8:00

You know Canada, it really has a lot of cases of FASD. I mean it's pretty prevalent up there, isn't it? I mean it is everywhere. But I think that you guys are kind of ahead of the game.

Speaker 2: 8:13

I think he just hit the nail on the head right there. We have identified it, whereas in a number of countries around the world it's still hidden. And if it's hidden, you don't know how many people are affected or what the damage could possibly be. On the other hand, people are missing out on all our positive aspects too, because we are being hidden actively. So, speaking up, as I say, make some noise and let people know that we're here. We're your neighbors, we're the people you work with, we're the guy you like to talk to when you go for coffee, because people with FASD are here and estimates range to about 20% of the population being affected on some level by FASD.

Speaker 1: 9:06

You know, just by talking to you or talking to me, nobody would say oh, I can tell They've got FASD, they're affected by alcohol. I can tell just by talking to them.

Speaker 2: 9:19

Again, with it being a spectrum, there's so much variation in people and the amount of the type of effect. Okay, a lot of times with fetal alcohol spectrum disorder, people will say they look like they have FASD. There is no real look when they talk about facial features. And we recognize in Canada three sentient facial features a short, palpable it's I don't want to get too technical the distance between your, the width of your eye, not the width of your eyes, but one eye from side to side, the width of that opening. There, in that you have a philtrum, which is that neat little skin area right below your nose, that little divot in there. Often people with FASD who have facial features do not have one and the thin upper lip, which of course I have too. Now, the thing about facial features that a lot of people don't realize is only about 20% of us with FASD have any of them and only 10% have all of them. So there is no look to FASD. One of the things that we have to dispel is that you can just tell by looking at someone. Here I got a real fact for you. I'm just going to keep throwing this stuff up, okay go ahead. Fasd does not only affect our brains neurologically, our central nervous system. There are 428 known comorbidities Comorbidities with FASD, 428 identified conditions that can affect a person on the spectrum. So that leaves a lot of room for differences and it's not all brain, but it's definitely how we're usually identified.

Speaker 1: 11:20

Yeah, I was going to ask you how it affects the brain and how it affects the body. I mean, you seem to know quite a lot about this. Oh well now getting too detailed about it. So you know, I mean talk about it at an eighth grade level maybe.

Speaker 2: 11:39

Well, it's highly individual. For example, if we go back to facial features, they only occur if alcohol is ingested on three specific days, and those are days 18, 19, and 20 of pregnancy. Are you serious? Yes, really, because that's when the facial features are being formed. So if there is alcohol present on those three days, then there will be facial features. So, again, that's why it's almost a red herring to look at facial features. We need to look more at the person as a whole.

Speaker 1: 12:21

Well, what about, you know, the other days? So it's affecting different systems at different times when people drink.

Speaker 2: 12:29

Mm-hmm. Yeah, it all has to do with how babies are made and you know the day-by-day process and how a person is affected is dependent on the amount of alcohol and when it's introduced into the system. So you really don't know until the child is five years old sometimes, and then the things that you might have overlooked before start to show up. And that's how we start identifying in children. And we have children who you know they might have been a really fussy child. They didn't eat, didn't sleep Well. Parents, you know they get used to that, but then they start seeing them with other children and notice that they're not keeping up. And you know, that's sort of how the whole identification often starts. Because FASD is quiet, it doesn't make a lot of noise and until you know it's there it can remain almost completely hidden.

Speaker 1: 13:32

Yeah, I always call it the invisible disability and you know that was one of the reasons why it went so long without it being detected in me. I mean, they called it lots of other things plus. I also am autistic on top of it, and autism can go with FASD. I do have the thin upper lip and I don't have the really formed what did you call it between the nose and the lip.

Speaker 2: 13:59

The philtrum.

Speaker 1: 14:00

Yes, I that is not completely the way that it should be. It's more flat. When I went to the hospital, you know they did thing different things. They looked at different things on me and said that I did have it. What did they do for you? How did you know that you had it?

Speaker 2: 14:22

Well, my diagnosis didn't come until I was 47 years old.

Speaker 1: 14:26

Oh, okay.

Speaker 2: 14:27

I'm 62 now. So I basically gone through most of my adult life not knowing and always being the odd guy out, the weird one, and just sort of accepting that I was different than other people, but I didn't know why. So through all these years I was trying to figure out why do I think differently? Because I do see the world differently than what we would refer to as a neurotypical person, a typical person on the street. I do see and experience the world differently and I could feel that, but there was never a name for it. So I got a lot of different diagnoses that fit, didn't fit, kind of fit, sort of no, yes, no, and they didn't work. And it wasn't until I actually got the FASD diagnosis and started to learn about it that I started. Yes, this is me, this is what. Finally, after four decades, finally figuring out why my brain is the way it is and I'm not saying that my brain is bad. I've always liked my brain and, despite the fact that people tell me you're weird and everything like that, I don't get bored because my brain takes me to places that maybe other people are afraid to go or just don't think about it.

Speaker 1: 15:58

I'm never bored either. I don't understand how people can get bored, because my brain is constantly going and I never stop, and you and I are very, very much alike because I know you and it's kind of funny. But again, I agree with you I like my brain just the way it is and even though I'm different and I think different and I am a little weird, I don't want to be different and I like my brain just the way it is.

Speaker 2: 16:30

Yeah, exactly, and this is part of the change that we're now trying to get educators, law enforcement, judges, the judicial system, everyone to understand is that you don't have to fear neurodivergent people. In fact, we can add to the conversation. I don't want to say Neurotypicals are black and white and we're color kind of thing, but we do add spice. We absolutely add spice. We're not regimented, we don't fit into a lot of boxes, but we can move between these boxes quite freely. So that can scare a lot of people who don't understand it. However, it's not a bad thing and that's all my life I was told it's bad. What you're doing, the way you are, is bad, negative, and that made me shy, made me look down, made me feel shame. That shouldn't have been there. So, person first, person first, centered care is what we're shooting for. It all starts with the one person. In my case, it starts with me and then it gravitates out. It's not, it comes from the outside and I form to fit the way the outside wants me to be, because that will never work. However, if we start with my fit in society and work outwards from there a person first model of care that has incredible effects for the person because it fits them.

Speaker 1: 18:07

You know that word stigma and how people do see this disorder, and I don't really like that because it's not a disorder. You know, we are just part of the population and alcohol affected us. There is a stigma, I think, only because of the alcohol piece of it, would you say.

Speaker 2: 18:34

Oh yeah, there's definitely a lot of stigma that comes with FASD and that's one of the things we have to fight is quite often it's looked at as somebody doing something wrong.

Speaker 1: 18:50

And it would be our mom.

Speaker 2: 18:52

I'm in a lot of cases, specifically the moms. Why did she drink? Well, you know, here's the funny thing about a Huge percentage of women might not even know that they're with child for up to three, four months.

Speaker 1: 19:08

Exactly.

Speaker 2: 19:09

They. They continue what their normal life is like. They go out on weekends, maybe they have a few drinks with the girls and things like that. I'm not talking about someone's going out and getting blind drunk, but you know, after work have a couple of drinks on Friday night or something, and then you know, maybe over the weekend have a couple then. But that little child is still forming and she doesn't know. So how can we blame Mom if she doesn't know? So that's one of the first stigmas that we have to get rid of. It's not something that mom did to us, actually, because there's not a lot of education about FASD. We could say that moms and children are both victims of a lack of knowledge Of what alcohol can potentially do.

Speaker 1: 20:00

Yeah, but what would you say about the people that know that they're pregnant and they do choose to have a drink, say just out, you know, at dinner or something like that?

Speaker 2: 20:12

Oh Well, first off, a lot of people again, like I said, don't believe there is such a thing as FASD. Okay, so it's part of human nature also to To go oh I don't need a shot, I'm gonna be okay, it won't affect me, because that's why people are we think it'll never happen to us. But there are a large percentage of People who don't know what alcohol can do, a lot of people who don't know they're pregnant, and there's a lot of grief and trauma when people are trying so hard to ease their pain they're not able to see the long-term effects down the road, and not always that somebody is doing it intentionally. It's not always that they're doing it unknowingly, but sometimes it's a trauma reaction and people are trying not to hurt and what ends up happening in the long run is more people end up hurt.

Speaker 1: 21:17

Right? Yeah, I do think that it's not an intentional thing. I mean, a lot of women just think I'll just sit down with a drink and they don't think that it will affect their baby. What about breastfeeding?

Speaker 2: 21:30

there was a lot of a lot of discussion about that a few years ago and and researchers have looked at it and the development period of fetus into a baby is internal in the mom. Once she's out that process is over. So you can't get FASD from breast milk, so it doesn't actually cause but it wouldn't be the most healthy thing for for the baby. No, not necessarily. So it's not a good thing by any means, but it's not as bad as they initially feared that it might be how did it affect you academically and in life period?

Speaker 1: 22:14

I mean, you have mentioned how you were different and how you've struggled and things like that, but can you talk specifically on some of those Areas in your life where you've struggled?

Speaker 2: 22:27

Well, I've always colored outside the lines.

Speaker 1: 22:30

Yeah, now dad, I do know about you.

Speaker 2: 22:34

Ever since I was a child, I always asked why, why? Why? Because I wanted to understand. Whereas other children might accept something, I would ask more questions. So that set people off to begin with, like I was a bit of a pain. I was, but I didn't really understand Humor. Getting along with people Was difficult because they would be talking about stuff that I didn't necessarily understand. So it was always like I was lagging behind, but Not in an intellectual way, in an emotional way. I'm a person who, if you tell me bad news, nine times out of ten I'm gonna laugh. That's gonna be my first reaction. It doesn't mean that I think it's funny, but it was a go-to for me to keep myself safe. At least it was a reaction. So it'd be things like that. It was Hard to get and keep friends.

Speaker 1: 23:43

Was it because you didn't know how to react, so that was just your go-to reaction?

Speaker 2: 23:47

Well, yeah, yeah. Basically, emotion Was something that I didn't, I wasn't really allowed to express when I was younger and that would lead to, like I said, not knowing how to respond to specific situations Emotionally. So laughing when somebody says Something bad happened or something like that doesn't mean that I thought that I found it funny, but I just didn't know in the moment how to react because it takes me a while to process things. So it's kind of like I'll hit my my finger and I'd be like wow.

Speaker 1: 24:30

Hey, wait a minute.

Speaker 2: 24:31

Why, but no, well, I just wasn't sure if it hurt but how it did hurt. So yes, sometimes the processing can take a little while and when people ask you a question they want an answer really, really quick. And you sit there going, you the, they can see that you're struggling and that Sort of kids you put onto the B tier or the C tier and before you know it You're kind of like hanging around in the school yard with one or two friends maybe, and that's about it.

Speaker 1: 25:05

How were you in the classroom?

Speaker 2: 25:07

Oh, hmm, it would depend on the subject. But again, being inquisitive, and One of the ways that I could hide if I didn't understand anything was I would make jokes. So I was the class clown, so I was disrupting the class for other people, but what I was really doing was just trying not to look stupid.

Speaker 1: 25:30

You know, I did the same thing when I was in my younger years. I would look down a lot whenever the teacher was calling on people and of course you know if you try to avoid being called on, they're gonna call on you. But that's what I would do, because I didn't understand a lot of what was on the page even or Understand what the teacher was saying or what the directions were. So I always felt lost. The older that I got, I was better at avoiding that. But when I got to college, that's when I became more of a class clown. I can remember even Raising my hand just to give a stupid comment that made me. I Mean, I, I am kind of embarrassed at who I was back then. But I mean, I've changed, I've grown up. You know, I've matured a lot since then. But that was my way of handling it, because it would take me, I Would take a tape recorder into the classroom, even in when I, when I did get my master's degree, I learned. You know, hey, I'll just take this tape recorder in and all then listen to it back and take notes and all that stuff and and I figured out how to learn. But when I was in the classroom. There was too much going on within the classroom for me to really take it in and, like you said, processing was so much slower for me, so it took me such I had to really focus on what was going on, and I couldn't. It was just too difficult.

Speaker 2: 27:01

So yeah, yeah, large-class numbers, a whole lot of stuff going on and there's sort of a I Don't know a pecking order with kids and you try not to get to the bottom of it. You want to be popular and everything like there's a lot of pressure in school. I mean, aside from the learning, all this other stuff going on can really, you know, sort of Distract you from what you're actually supposed to be doing, which is learning new stuff.

Speaker 1: 27:34

Yeah, and then when you're going through you know just normal growing up, which is already traumatic as it is, and then you throw a disability on top of it and trying to make yourself figure out life, it it becomes more and more difficult. And trying to be social it as a teenager, with what now we know was fetal alcohol, I mean it can be so much more difficult to fit in.

Speaker 2: 28:02

Oh, absolutely, which is why I ended up quitting school in grade 10 At the time. I was so bored. The I also have ADHD. This is one of the comorbidity comorbidities I hate. That word of FASD is ADHD. It's one of the more common ones, and and that means that my hands are always flying, I'm always moving. Well, you know what I'm like. You see me, my hands are everywhere and I'm constantly in motion. Yeah, which, in school, is not a good thing. So, yeah, by the time I hit grade 10, it was like you know what bye, I'm out of here.

Speaker 1: 28:41

Well, all three of my kids are also fetal alcohol and they, you know, I they never stop. I mean, their brains are constantly going. One was affected by alcohol and other drugs and she actually has toxic brain and we have to give her medications to help calm her, because she is always On a 50, not even a 10, I mean, she's just constantly going, and then we have to give her medicines for her to actually fall asleep, because if she didn't take those medicines she wouldn't go to sleep, she, she would stay up for days until she finally just her body gave in and then she would crash, which that's what used to happen until we got medications. But you're right, I mean you throw in all that stuff and then ADHD and stuff on top of it. It's almost impossible to learn in the classroom. It was for me.

Speaker 2: 29:36

Yes, yes, it definitely. You know you would think that quitting would be one of the worst things you could do in in grade 10, but for me, it was one of the best things. What I ended up doing was I worked. I didn't work, I just got myself into a little bit of trouble not big trouble, and everything but I learned To live within my own body. Even though I didn't have a diagnosis yet, I became more comfortable with myself. I didn't always feel that I was the Effective one or something like that, because I had success in jobs and things like that and I knew that I could do these things. So I Was developing confidence that was being eroded every single day. In school I was able to find, and then, when I was 23, I went to college. So I Was a little behind my peers, but what I gained in that time I'd taken off more than made up for that five-year break.

Speaker 1: 30:41

You know, I always say that I'm, I'm half my age and Because I've always like now and in my 50s I mean I feel a, finally, feel like maybe I'm around 30, you know, like, but I don't mean physically, I mean emotionally, and it just feels like I. It always has taken me a lot longer to be the same age as my peers.

Speaker 2: 31:07

Oh, yeah, I, you know, I I think my stars, actually to tell you the truth, because I run into people that I grew up with and they're Old oh, my gosh old.

Speaker 1: 31:24

I agree with you. I think that we got the, the I don't know, the young bug or something. The young Because you and I have both talked before Years ago how we just were aging a little differently. Yes, slowly, more, yeah, a little bit more slow than our peers.

Speaker 2: 31:48

Many people with FASD can often look much younger than their age, like okay, the weirdest thing for me that is still kind of freaking me out totally is I'm now Gone. I want when it is 62 in a couple of weeks, I I still have brown hair yeah. Which again this one talking about the people that I grew up with. I don't recognize them. Now there's another thing about FASD, I think concretely so. Saying that someone aged or someone got older, you know, maybe to a neurotypical person, they can sort of picture that when I see the person, I do not know who they are. I absolutely then spend like two weeks trying to put the new picture to the old name, because my brain doesn't think abstractly. Naturally I love puns which are abstract, but I've taught myself how to understand puns over the years. When I was a kid I didn't get jokes. I just didn't understand what was funny about them.

Speaker 1: 33:00

Yeah.

Speaker 2: 33:00

And it's through time that I started to learn things like that.

Speaker 1: 33:05

Yeah, I'm the same way. My kids are the same way. They just don't understand. We were watching Tom and Jerry with the kids and my daughter sitting there going why are they being so mean? Why is he bullying? And so we had to turn it off because she just got so upset and it's like, hey, it's okay, it's okay, it's supposed to be funny.

Speaker 2: 33:29

Yeah, yeah, that's. One of the things is we don't necessarily understand things like humor and things like that, and we often develop on our own timeline. Sometimes it's slower, sometimes it's quicker. It's called this maturity. So if you want to look at it, you might cognitively well, let's start out say you got someone who's 25 years old, however emotionally they might be 15 or 16. Yes, so their reaction to an event emotionally might be something you wouldn't expect from a 25-year-old, but maybe a 15-year-old getting that emotional over something would make sense. You know, this maturity is difficult. It's not immaturity, because a lot of our functions still keep up to our chronological age, but some might be lower or higher. Often with kids, we see kids in school. Who, how can you be that smart and intelligent? Now, you're only looking at one particular aspect of them. They might be 12, but they can talk like a 20-year-old.

Speaker 1: 34:39

Oh, you are. Just you are saying so much in the words that you're saying. I mean, that was me. I was always like a 12-year-old and a 25-year-old body and I always felt like the youngest person in the room, even though I was the same age as them. And I, you know, even in my I don't know 20s, 30s, 40s. You know, I just looked at things in a naive, different way than everybody else. And my one son who has been highly affected by alcohol and it actually I don't know if anybody knows about DeGeorge syndrome, but one of the ways somebody can get DeGeorge syndrome is through fetal alcohol syndrome and he just has so many challenges. But he is 10. And he is his body, his maturity level is more at like, maybe a three or a four-year-old, and so I feel so bad for him because he tries so hard to keep up with his fourth grade peers and a lot of times he just looks so different with his actions. I don't. He kind of looks typical. He does have the facial features and things like that, but he he does try. He looks as typical as he can be with FASD into George syndrome. And I'll tell you what I just feel so bad for him trying to fit in when you know they're looking at him like why are you acting like you're?

Speaker 2: 36:31

three yeah. Yeah, it's especially tough with kids because they haven't found their talents yet in a lot of cases. So they're seeing a whole lot of negative feedback but they're not getting a lot of positive feedback and that can really affect you as you grow into adulthood. So, as parents and caregivers, it's incumbent upon us to cheerlead our child to unders, to say, yeah, I know that you're struggling, it's not always going to be this way. One day you will shine. Yeah, and I I believe in you. And that's one of the most important things is to tell the person, let them know you believe in them.

Speaker 1: 37:16

Yeah, yeah. I mean I actually at night have held his hand before bed and we have our conversations and I've actually said those exact words, looking right in his eyes, and said I believe in you, because I know he doesn't believe in himself right now and that really hurts. It hurts hard as a mom. But you, you know, over time I mean you have found the confidence and I'm sure you didn't have this type of confidence and believing in yourself when you were a kid.

Speaker 2: 37:49

No, no, no, no, no. When I was a kid, I was a kid, but you know, one of the weirdest things what we're talking about is I might be the oldest person in the room, but if something happens, I look for the adult. And then the adult turns out to be me, and then I start looking for an adult year adult. Because me as the adult, it's a concept that I'm again with the dismuturity, the fact that I don't feel any older than when I was 20, 25.

Speaker 1: 38:22

Yeah, I don't either and I don't need because I've got now. I've got five kids, five grandkids and my right. Can you believe that? And I'm in three kids that live with me currently. And sometimes I just stand in the middle of this chaos and I'd say I am the adult in the room. I know, and adulting isn't always fun.

Speaker 2: 38:53

No, no, it's kind of scary. It's like, oh boy, I got to make a decision now.

Speaker 1: 38:58

I want to touch on something. How did your parents or your mom or whomever you know, was aware that you actually have FASD? What were the reactions with your family as that was known?

Speaker 2: 39:15

Oh well, I was not raised by my mother, I was actually raised by her mother. Okay, and again, getting my diagnosis that late in life my grandparents had long passed on. Okay, and actually, to be perfectly honest, I am almost completely estranged from my birth family. So I'm not really sure what their reactions were. The few people that I did talk to, it was mixed. Some people thought it was me victim blaming, trying to blame my mother for my own inadequacies or something like that, and I have never, ever, blamed anyone for FASD. If I do blame someone, it's governments and regulatory agencies that don't put out the information as to exactly what alcohol does, and we know it causes cancer, it causes birth defects, but we can't even get labeling on bottles. So there's a whole industry that has a lot of money and a lot of marketing finesse that we are sort of going up against. But the interesting thing is we're actually finding allies in the alcohol industry because they don't want to be damaging or killing off their customers either. So I'm finding that approaching these companies and trying to work out strategic partnerships where you can work together so people to understand because you work in FASD, does not make it automatically an anti alcohol statement. We have to keep those. There are actually two different things. What we're dealing with is the effects of the alcohol, yes, but we want to, you know, make life better for people with FASD. Right, because, like you were saying, it's invisible. People don't know it's there. There's a lot of stigma. People don't want to talk about it. It's embarrassing. I can understand, as a parent, why you don't want the whole world to go look, you failed. But you have to get past that sort of mindset of blame and shame and deal with what you have, what's there today. No amount of blaming or shaming is going to change anything. It's not going to make anything better. What you need to do is again go back to that person-first model help the person, help the person, help themselves, and we're all going to be much better off and we're all going to benefit from it in huge ways.

Speaker 1: 42:12

Well, the only people that they're going to be losing for them not to drink for nine months is, you know, the mom, and then they'll be able to drink again. I mean, it's not like they're asking for them not to drink the rest of their life because you know they've got a baby here. It's only for nine months. And you know we celebrate or not celebrate, recognize fetal alcohol syndrome or sorry, I did it again fetal spectrum. See, that's so old school and I'm so used to saying it that way, but fetal alcohol spectrum in September, and especially on September 9th. Do you want to touch a little bit more about why that is?

Speaker 2: 43:00

Well, one of the okay, I'll go back to the very beginning Fetal alcohol syndrome was identified in 1976, I believe. Up until then there was no actual diagnosis and it's moved on to the other ones partial fetal alcohol syndrome, alcohol related neurological deficits, etc. Etc. And these all has eventually become FASD under in the States, the umbrella term. So 1976, we finally have a name for it. In 1999, a group of people Brian Philcox, his wife, bonnie Buxton, teresa Kellerman and a few others got together and wanted to make a statement. They decided that because, again, pregnancy is nine months, the ninth month is September, they chose the 9th of September, 9, 9, and they we-ringed bells at 9.09 am to signify that we're here and to show people that people with FASD are part of the population. So that started on September 9th at 9.09 am 1999.

Speaker 1: 44:28

Wow.

Speaker 2: 44:30

Drone from year to year and right now it is celebrated worldwide. In fact, we now have September as FASD month, so there's International FASD Awareness Day on the 9th, but the whole month is often set aside to trainings and podcasts and other ways of celebrating people with fetal alcohol spectrum disorder, because we're here and we're not going away and you know what we can add to this society in a huge way.

Speaker 1: 45:06

Oh, my goodness, I mean I can't tell you how many people-you and I both do this. We've elevated the cause. We've elevated whatever it is we're going through at the time. For me it could be FASD or autism, or it could be what I'm going through with my kids, or mental health, or what I mean. It's the podcast, it's you, because, rj, you started well, all back up just a little bit, because you and I, when we first initially started out on our endeavors, in our first real talk, which I talked about at the beginning, what we called it was the Swiss cheese brain effect and cheesecake emporium, which just absolutely cracks me up and you had this little Sherlock Holmes picture of yourself and it still exists today, which is crazy. If you go on Facebook, people can actually see this page that you and I had started years and years ago. But then you took it to a whole different level where you now have flying with broken wings and everybody listening if you haven't joined and you know somebody or you want to help in this cause in some way, or you know flying with broken wings has how many followers now?

Speaker 2: 46:27

I think it tends to be kind of fluid, but we're around 7,000 right now, I think.

Speaker 1: 46:33

I mean when you and I. I was one of the first admins on this page and when you started this, you knew that it would be 7,000 strong right now.

Speaker 2: 46:46

Seriously, I wish I did. Initially I was just looking for a place for people with FASD to get together and discuss what we live with, and that evolved and pretty soon we were bringing in caregivers and professionals, because the stuff that we talk about is the stuff they don't know about.

Speaker 1: 47:11

Yes, and they can learn from us. We should be in the conversation. We're going to stop the first part of the interview with RJ right now, but there is a whole lot more and it's really good stuff and please stick with it. I know that this is different than what Tina and I normally do, but this is a topic that everybody can learn from. I mean, this is something that is not often discussed, and how many of you even knew that September is FASD month? And how many of you knew some of the information and facts about FASD? I mean, some of it I didn't even know, and I'm learning as well, and I know a lot about FASD. So I mean, just stick with it, because we get into a lot more stuff and there might even be a part three. I mean, rj and I ended up talking for more than four hours today and we are not going to make the episodes that long, trust me, but there's at least another episode, if not two, and they're really worth listening to, and I really want to thank you, everybody who made it to the end of this episode, because that really means a lot to me. This is a cause that is very near to my heart and you know, please message me, please let me know what you think of this episode. And you know, maybe spread the word a little bit about FASD too, because there is so much misinformation about the cause and we love you here at Real Talk with Tina and Anne, and we thank you so very much and we also have some very exciting episodes coming up after RJ. So again, thank you and see you next time.