FASD: From Someone Who Lives It

Welcome Stats And Why FASD Matters

SPEAKER_03 0:08

World changers are pleasing everybody.

SPEAKER_00 0:11

They're just not welcome to Real Talk with Tina and Anne. I am Anne, and today's episode is deeply personal to me. Today we have RJ Formanac, and we are talking about a condition that deeply affects millions of people around the world, yet, so many people still do not fully understand it. If you want to understand the life of a person who has had to live and overcome a neurodivergence that affects up to one in 20 United States school-age children, according to the CDC. And according to the Center for Addiction and Mental Health, in 2024, 119,000 children are born every year who have FASD, otherwise known as fetal alcohol spectrum disorder. And the global prevalence of FASD is approximately 7.7 per 1,000 in the general population, with rates potentially as high as 30% in high-risk populations. These numbers highlight the impact alcohol consumption has during pregnancy on fetal development. Individuals affected by this have a lifetime of difficulties. And I think many will be shocked to hear these numbers. But first, I just want to say to you, RJ, brother from Another Mother, the founder of Flying with Broken Wings, an online support and awareness community, and co-creator of Red Shoes Rock, a global movement that brings visibility and understanding to those who live with FASD. RJ, I am so glad to have you on today. I am just thrilled.

SPEAKER_02 2:00

It's always a pleasure to speak with you. And we go back uh a few years now, and uh we've been on this journey separately together, but always keeping in touch. And I think that's fantastic. I love what you're doing. You're really changing the world for a lot of people. Great job.

SPEAKER_00 2:16

Well, you are as well. I mean, I am so proud of you. I'm so proud of us, actually. You know, I mean, look at where we started, and I was trying to figure out how long it's been. I mean, it's been almost probably a couple decades. I don't even know how long has it been.

SPEAKER_02 2:34

At least 15 years.

SPEAKER_00 2:36

At least. That's what I was thinking.

SPEAKER_02 2:39

I'm terrible with with with time. So let's say 15 and maybe a little bit more.

SPEAKER_00 2:44

Yeah, I was thinking the same thing. It goes back to when you and me were both, we we knew that we had been diagnosed with FASD. And Jeff Noble brought us together and we started doing shows kind of like this, but it was it was the early stages of streaming services, and we had a call-in show, and the two of us we started this little Facebook group outside of your very successful Flying with Broken Wings, and it was super fun. I mean, I think that it was the beginning for both of us. It sparked our voice uh in this way.

SPEAKER_02 3:21

Oh, definitely, definitely. Um, we experimented, we tried different things, and uh we had like what two seasons of our of our podcast. It was an audio-only podcast, obviously. And uh we had no boundaries. I remember there were a couple of times we both came off and we were both totally shell-shocked and just just totally wiped out. But we were reaching people who'd never heard what we were talking about and people who were living with it that didn't know. It's amazing the number of people who will listen to an advocate and start putting things together and then start seeking their own diagnosis. Those numbers are amazing.

SPEAKER_00 4:04

Yeah, they really are. We did talk about the numbers in the United States, but you're in Canada. So where what are the numbers in Canada?

SPEAKER_02 4:12

Well, um, the official numbers are um at about four percent.

SPEAKER_00 4:18

Okay, yeah, I knew it was higher. Yeah, but part of the reason why it's har higher, too, is because you guys are just so far ahead of us.

SPEAKER_02 4:28

Our diagnostics are catching a lot more, so our numbers and our prevalence are starting to rise. I personally think it'll go a lot higher than that. And um, there are many people our age who are who have FASD who don't know it. Because um 100%. Well, I was 47 when I was diagnosed, and I was the first person in this part of Canada to be successfully diagnosed as an adult. I'm 64 now. That's not that long ago. So it's only been in that amount of time that we're starting to catch the ones who aren't kids now, because as he was saying, this is lifelong. A lot of people think it's like a life sentence. I think it's an adventure. Yeah, I have I have an attitude about it. Um, even though I was diagnosed late, I had to fight for my own autonomy in life. Yeah, I was the weird one, I was the one who was always doing crazy kind of stuff all the time, and the one who went too far and said too much and laughed at uh at things that weren't funny, just totally inappropriate, but I was real, and despite the fact that everyone kept telling me I was wrong, I couldn't change who I was, so I had to accept that. And I grew up knowing that yeah, I'm a weirdo. If you don't like it, too bad.

SPEAKER_00 5:55

I'd like you 100%, and I love you, and you are perfect just the way you are, and you always have been. As long as I've known you, you're a really special, a really special guy. And I have three kids who have FASD, and they are all amazing kids. So yeah, it the one thing about it is that you know, sure, we want to get out there and we want to do the fight, you know. Tell people we just had uh we just came out of September and it was uh the set the ninth month, the ninth day, you know, it represents not drinking for nine months. And we want to get those messages out there 100%, but we're here, you know, we're already here, and and that's also the other message that we want to get out there is that you know, there's a lot of us that are here that are already born with FASD. And so, you know, we're we're some of us are grown up, some of us are still young kids, and we want to be able to get that message out in who we are.

RJ’s Early Life And Foster Care

SPEAKER_00 7:05

And um, first of all, you know, I wanted to ask you, RJ, who is RJ? I mean, what was your life like growing up?

SPEAKER_02 7:14

Um RJ. Oh, he's just some guy. Um I followed the classic no hope trajectory. Okay, first off, I'm First Nations, I'm native. Um, what you would refer to as Indian in the United States. When I was born, my mother gave me up at birth. Um, she I was she was unwed, I wasn't expected, it was 1961. Life was uh a lot more judgmental in those days, and uh she thought, okay, well, I'll just you know forget about this and learn nothing. Um her mother, my grandmother, did not like that idea at all, and she stepped in and took me. There's no adoption going on here, we're taking this kid home. So I ended up being raised by my grandmother, and that went fine, but they kept trying to reunite me with my mother. She would get stable for a while. She had um a problem with um alcohol consumption, and that was um a weakness of hers. And she would go through relationships, she would um seem stable for a while, I would get sent to live with her, everything would crash, and there'd be bites and kinds of stuff like that, and then I would go back to my grandmother for a little while, but I'm coming back to my grandmother every time with all these experiences, very, very negative experiences. Um so eventually, when I was 12 years old, I sort of was just too much for my at that point. My grandmother was my age, 65, roughly, and uh my grandfather was in his mid to late 70s. Okay, they couldn't handle a teenager at that point who was super rambunctious, who had ADHD, was bouncing off the walls 100 miles an hour all the time. Yeah, yeah, and frustrated and angry. One of the things that really frustrated me as a kid was I was always getting in trouble for um being non-compliant, let's say. I would ask why. Someone would say, go do something. And I would innocently just wanting to know why the reasoning was, because I was curious. I'd ask why, and that would end up with uh incentive to be compliant, let's say what it was in those days. So, yeah, by the time I was 14, I was in trouble with the law. I ended up being removed from my grandmother's by the courts and uh went into the foster care system. Well, you know, I didn't foster very well, and uh I went through 13 foster placements in 12 months, at which point they gave up on me, went back to the court, had me emancipated as an adult, and then I was placed into an adult group home. If I screwed up there, I was going to jail.

SPEAKER_00 10:16

How old were you then?

SPEAKER_02 10:18

I was at this time 15.

SPEAKER_00 10:20

Okay.

SPEAKER_02 10:22

And I had been emancipated as an adult. I thought it was really cool. I didn't realize that, you know, then I could be charged for anything as an adult.

SPEAKER_00 10:32

Yeah, that's pretty scary. What kind of behaviors are you talking about that caused you to go through the system like that?

SPEAKER_02 10:38

In particular, I broke into a house and vandalized it. I stole I stole a truck and drove it around for a while, just dry riding and damaged it a little bit because my kids are kind of going. I didn't drive that well. So I did it a few times. Um, but I brought it back to where I got it from, and um I ended up getting caught because I had left um a shoe print in paint. Now, the one thing nobody knows is I had met a girl, but she lived long distance away from me, and I needed to contact her. I couldn't use my phone because it was a secret, and these people were on vacation. So I went in to make a long-distance phone call, and then to cover my tracks, I made a mess. So I could never tell anyone that part, and I ended up with five years probation out of the whole thing. And then I was thrown into the mental health system because they thought I was nuts because they couldn't understand why I'd done this. And I I was too embarrassed by the fact that it was more about raging teenage hormones to tell them that it was about making a phone call, not about wrecking somebody's house out of anger. So that was subtrifuge, and it got me in way more trouble. I learned very quickly, I just you know, I deal better with the truth. It's better not to try and be sneaky for me. So yeah. And I ended up in a group home with a woman who years before there was even a term for fetal alcohol spectrum disorder, seemed to understand at least neurodivergence. When I first moved in, the first six weeks, I sat in my bed alone. We had a ward, so there was like five guys there, but I had my own bed, it was my own space. Nobody else would touch it, theoretically. And you know, it was mine, and that's the only place I wanted to be. She would let me take my meals up there, like I had to come down and get it, obviously. I was upstairs of her house, and she let me acclimatize up until that point. It had been 12 months of hi, this is your new family. Get out of here. Hi, this is your new family. We don't want you, and so I was so defensive. So it took me about six weeks until I finally came down to eat with the family. Wow, that was the way she approached me the whole time. She allowed me to be me, she gave me autonomy, and that in itself was such a learning experience. What ended up happening was at the age of 18, I aged out. So my um childhood support payments and everything stopped. She let me stay there with odd jobs and trying to pay the rent with a little bit here and there, but she she let me stay there until I was 23. Wow. And for me, that made all the difference. Between 18 and 23, my brain started figuring out that um, yeah, okay, you have to figure out what you're gonna do with your life.

Finding Strength After Late Diagnosis

SPEAKER_02 14:00

Yeah, and then I knew what I had to figure out was um what can I do? I know my personality, I know that I'm here, there, I'm everywhere, I'm like a million miles an hour, and I can't do a sit-down job. I cannot. So I looked for where my talents were, and those are in the more artistic realm, and I end up going into television, and then the rest is all history.

SPEAKER_00 14:25

Isn't that interesting that we both went into media? I think that's really interesting, us two FASD people.

SPEAKER_02 14:34

Um people with FASD often see things in a way I'm I'm working on uh on a project right now where I'm gonna explore that people with FASD lead with their hearts. We do everything with that emotion built in, it's not separate. If we're excited and on your team, we're pushing, we're ready to go, we're like race horses. 100% and you know, if we're mad, we're really mad. We we feel it in our hearts, it's not just in our heads, we feel it. So people with FASD are we integrate that emotion into our daily life, and I think this is what a lot of people see in us that they find attractive is that we can speak with emotion that we can feel in that moment, and we often live in the moment, and that can be either good or bad depending on the moment, yeah. But uh yeah, FASD is fascinating to me, and learning how my brain works and finally understanding that just it was something I had to share.

SPEAKER_00 15:45

You know, that's really interesting that realizing what your brain was like with FASD. I don't know. I mean, it took me a lot of years to get to that point for me to really understand. I mean, I was a screw up. If you would have looked in the dictionary under screw up, there I was. I mean, I couldn't figure it out. And everybody else around me in the classroom, you know, they were all just sitting there taking notes. They were doing their stuff. I was watching them to figure out what I was supposed to do. I always felt like it was 10 steps behind everybody. What I was legitimately trying to keep up. I wasn't purposely trying to do something wrong. And I even had a teacher say to me, you know, um, Anne, why are you the only one in the classroom that that's not doing what they're supposed to be doing? And my only answer was, I don't know. Uh, and I really didn't know. And I and because my heart wanted to do what was right. And I look at my son, who it's the same thing. I mean, he's in trouble all the time, unfortunately, and and we're doing everything that we can to help him. And he is upset that he can't make the right choices. And I think figuring out the FASD brain is huge for us to understand why we do the things that we do, even when we're not trying to. I mean, that's that's huge.

SPEAKER_02 17:13

And uh, what a lot of people don't understand is for someone like you or me, in those quiet moments, just as we're drifting off to sleep, we feel shame.

SPEAKER_01 17:24

Yeah.

SPEAKER_02 17:25

Because of the way we are, and that's unfortunate, however, because we don't want to be that way. Um one of the most pivotal moments for me was when I got my diagnosis, the diagnostician sat me down and she said, Okay, I want you to understand one thing it's not your fault. See, oh see, those are beautiful words. Nobody ever said that to me before. It broke me. It still does because that freed me to forgive myself because I was owning all the things that I did, and I know you probably felt that too. I did that regardless, good, bad, or whatever, I did it. I did it, and I felt responsible, whether it was circumstances or whatever, and finally I understood that my brain was conspiring against me, putting up obstacles that I didn't know were there, and that you know, it wasn't my fault I was this way. So that was that was such a freeing moment for me.

SPEAKER_00 18:35

Oh yeah, see, I still get emotional about it because this is so deep, and we're legitimately really good people. My son is probably one of the most uh beautiful souls, and I am gonna cry because uh he just went through uh all this testing at a hospital in our area. And we really, you know, it's interesting that you guys are so far ahead of us, but one of our biggest hospitals in the United States just started for kids, an FASD clinic just started. And my kids were one of the top, they they were three of the top ones that they wanted to look at. So my one son went in and he had almost about eight hours of testing, and it was, you know, from face measurement and like all this other stuff that they did. And of course he came out completely having FASD. And I already knew that he was going to, and it's a spectrum, everybody falls within the spectrum somewhere, and um he unfortunately has real was really hit hard by it, and I just you know it it makes me weep too, it makes me cry because he, like I said, has such a beautiful soul, and he in no way he wants to please, he wants to please, but he comes home from school with really low behavior grades. He's in a behavioral school because he's not able to really academically even keep up. So, you know, we're just you know, we just try to work with the academics or I mean with the behaviors, and he just feels like he uh he's falling short every single day. He just is falling short in his eyes every single day, and it's just so sad.

SPEAKER_02 20:37

Yeah, yeah, yeah. Um I I think he could help the school by having them address the um what you're seeing is symptoms. They're symptoms of what's going on in his brain, but it's a clue, it's a place to start.

SPEAKER_00 20:55

So did you go through school? Did you go through the regular traditional route, like you know, first through twelfth grade, and you just went in regular classrooms? Yeah. Okay.

SPEAKER_02 21:12

I was all I was always screw up, except in the English and history, and yeah, pretty well English and history were my two really, really I had incredible strengths. Everywhere else, I was a total screw up, class clown, disruptive, because I, you know, if I didn't understand what was going on, I start to make some noise, kind of thing. I, you know.

SPEAKER_00 21:35

See, and that's what I say about my son and also about me in school, is if you know, if you put somebody, even the smartest, you know, whatever it is, they and you put them in a rocket science classroom, they're gonna be acting up, you know, because you're speaking a different language, you're not reaching them where they are. If you're teaching way above where somebody is, then you're not gonna be able. Able to reach them, and of course, you're gonna see behaviors.

SPEAKER_02 22:04

Exactly, exactly. But you know, at that time there weren't even like special ed classes, there's no such thing as no, no, it was no just you get sent to the office. I spent most of my school years sitting in the hallway outside the office waiting for the principal. Back in those days, they still had the strap. I experienced that more than once too. Oh, I was paddled. Yeah, because the the assumption used to be um you curb behaviors uh by by physical force. The kid will remember not to do that again. Well, it doesn't work when the kid doesn't know why they're getting in trouble in the first place.

SPEAKER_00 22:46

And that's one of the things that the FASD people at the hospital explained to me is that with the testing that they found out with him is that the cause and effect isn't there. The ability to see, I did this and this happened. And for it to for him to remember that even into the next day is just too hard.

SPEAKER_02 23:09

Oh yes, completely. Um, like if you want to address a symptom, what they call a behavior, you need to do it in that moment. Because if you do it later, that's no longer in our memory. Like I have short-term and working memory issues, which means an hour, two hours later, I don't remember. I just um was the MC at an international conference for two and a half days. I was on stage running around everything. When I came home, I couldn't tell anyone what happened because I didn't remember. It's coming back two weeks later now. I'm because my long-term memory is sound. But knowing that I have the deficits in working and short term, they're both different but related. I'm able to, you know, forgive myself for not remembering today what I will remember in two weeks.

SPEAKER_00 24:08

Yeah, and I'm the same way. I mean, I have to uh if somebody asks me direct questions and says, Oh, did this happen? I could say yes or no, and then I can start pulling it out of me. But for me to just sit there and you say, How does it, how did it go? Tell me all about it. Uh yeah, yeah, I would appreciate the help and helping me get it out. And that's another thing is knowing how to speak the language of somebody who has fetal alcohol. You know, you have to know the person, you have to know how to be able to have communication with them. So you can help them be their best self.

School Behaviors As Brain Symptoms

SPEAKER_02 24:49

In Canada, we've made great strides with what we call the person first strategy. Okay. So um, like CAN FASE, which is the umbrella organization for education in in Canada, has largely um embraced that because that's giving the people with experience voices. And you can be the best researcher, but I'm the owner operator. You can see how I operate this brain, but you don't do it. I do. So only I can tell you what's actually going on. And in my head, we can't visually see brain changes except with a few very extreme tests, like a functional MRI, which is like hours long and can be really hard for someone with say ADHD. So they have started to realize that we're telling the truth about what's going on in our heads, and they're they're being able to utilize that. So our strategies now are all first thing called person first. It's about the person, not the FASD. It's the person who's living with it that's important, and we address the person first.

SPEAKER_00 26:06

Yeah, yeah. I mean, I think that we try to do that in the United States. I mean, uh, even the vocabulary that we use is different than it used to be, you know, even with um autism, instead of saying autistic, you know, there are people with autism or however you want to say it, you know, if you want to put the person first. And I think that that's really important. When I used to work at that school that you know of for kids with autism, it was the same thing where we put the child first. And if you do put the child first, then you're going to be able to maybe meet them where they are better. Because this is not just a blanket diagnosis where every single person you're going to treat them exactly the same just because they have something. So, you know, we have to remember that they are people first and they have feelings and they care. And just because they're doing something or they have something doesn't mean that they aren't doing their best. You know, I mean, they might actually be doing their best, even though their best is a lot different than what you think it should be.

SPEAKER_02 27:10

Exactly, exactly. So um, having that understanding permeating into the medical and the mental health areas as well as at the SD um general um social workers. I have a keynote coming up at the end of November with the uh Indigenous Chiefs of Ontario. So they um oversee the entire native education system. And I'm going there to speak about the um neurodivergence and the um, in in my particular case, the convergence of FASD, ADHD, and other symptoms that and how educators can best support students so they can understand how to help them, help themselves.

SPEAKER_00 27:58

Do you have any key points here?

SPEAKER_02 28:02

I'm still working on that one.

SPEAKER_00 28:04

I want to ask you a question. Were you ever angry at your mom?

SPEAKER_02 28:10

Yeah, many times, but not in regards to me, who I am, how I um know. I was angry with her for her coldness. Okay, but I never blamed her for the FASD because I always saw her as struggling with the alcohol. So I saw the alcohol as as the culprit.

SPEAKER_01 28:41

Okay.

SPEAKER_02 28:42

Um, again, coming from a native family, I have seen many examples of um how certain substances cross cultural barriers in a very bad way. Okay, and um physically it's not the best thing for some people to drink. And uh I can have a drink, but I don't choose to drink. So if I go out socially and somebody says, You want a glass of wine, everybody else have a glass of wine, I'll have a glass of wine, that's not a problem. But you're never gonna catch me going out to have a drink, if you know what I mean. That that's that's not my

Person First Support In Real Life

SPEAKER_02 29:20

thing. So um, and that's you know, personal choice, and I just don't like the way it feels. So, no, I don't either my mom. However, there are many people who have a journey to make with grief, loss, and acceptance when they do get the diagnosis. And are they angry? Yes. Do they have the right to be angry? Absolutely. Yeah, that is a piece that you need to come to on your own. So when somebody comes into my group and they go, I hate my mom, I hate my mom, I will not disagree with their feelings. I will try to show them that maybe there's more that they need to take into account, things they don't know, situations, etc. And through time, I often see a softening, and they start to realize my mom's a person too, and people make mistakes, but she didn't do this on purpose.

SPEAKER_00 30:21

Yeah.

SPEAKER_02 30:22

So who's the victim and who's the culprit? Maybe it's the alcohol and not the mom's yeah, it's hard to come to that, you know.

SPEAKER_00 30:33

We it affects us for the rest of our life, and I mean that's a lot to carry. I and I don't know. Did your your mom had passed when you found out?

SPEAKER_02 30:44

Yes.

SPEAKER_00 30:45

So she never knew.

SPEAKER_02 30:47

No.

SPEAKER_00 30:48

Okay. I wonder how she would have felt. Can you tap into who who you think she might have been if she would have known?

SPEAKER_02 30:58

I think initially she would have pushed back. I know in her heart of hearts she knew that something happened at some point, but it might take her a little while that she she would accept the fact that um yeah, maybe uh you drank.

SPEAKER_00 31:16

I think she would. When we were younger, you know, people didn't really think about it as much as they do now. I mean, there's a lot more information out there. I mean, if you're drinking now while pregnant, you probably know that you shouldn't be. But back when we, our parents were pregnant with us, they it wasn't as prevalent. And you know, it and they might not have done things intentionally as much as you know, now it it's known. Don't drink while pregnant. But I really do think that there is a lot of us out there, like you said, there's a lot more than people realize. There's people that don't that don't have a great working memory, who have diff had had difficulties in schools, and they have a lot of disabilities, and they don't understand why they have the differences that they do, and they may never because they don't look into it, but it could have been because and sadly, sadly, huge chunks of the homeless population will be neurodivergent people, and I see that constantly.

SPEAKER_02 32:39

Um one of the most heartbreaking things to go to like a big conference is when you go outside of the hotel. I mean, you're in a five-star hotel, everything's grand, and then people are opening doors for you, and all that stuff. You walk outside, and there's a guy sleeping on a grate.

SPEAKER_00 32:59

That's that's hard.

SPEAKER_02 33:01

I meet a lot of people outside of hotels, and I have some really, really good conversations because I mean, at any point that I could be next, and that's the functional reality that an adult with FASD has to live with. Is um you're always living on a knife edge. You make that one mistake, and who knows what could happen. It can be it can be a lot of pressure, however, the way I look at it is there's a certain amount of freedom that comes with neurodivergence. Um it's the the classic, it's not thinking outside the box, there is no freaking box, the box does not exist. Um, all ideas are free form, flowing, they can go from here to there to there, and it's a wonderful feeling. I couldn't imagine having a brain that doesn't work that way. When I found out that not everybody has a voice in their head, I was amazed. Because when I think about doing something, there's a voice, it's my voice saying, Okay, well, you have to open the door this way and don't forget to duck your head. I am functionally telling myself the steps as I go through life. I realize not everybody does that, they just automatically oh, duck my head, remember, and it's not even, but we're like the difference between an automatic transmission and manual. I have to think about everything. I love that. Every single step is like you know, shifting gears. I gotta clutch, I gotta put the gear in, I gotta put the clutch out, I gotta remember to put the gas on, and at the same time keep an eye out for everybody that's oh wait, I have to put the brakes on there, I'm out of gear and I'm in neutral, and now I gotta put it back in gear, and then I gotta gear up, gear up, oh geez, I gotta do it again. Every thought process is like that. We get tired. So, um, like in the education thing, one of the things that we stress, no homework. Those kids have just had six or eight hours, and for someone with a neurodivergence, that's a whole lot of gear shifting. And then you're gonna give them homework? No, yeah, no, no. IEPs have to say no homework.

Anger Grief And Life On Edge

SPEAKER_00 35:23

Yeah, you you know my story and what I used to do in order to make it with all the homework, and I had to teach myself how to learn because I didn't know how to learn. And if I was gonna make it in the school system with a C, you know, I mean, I had to uh read into a tape recorder, listen to it back, then I would take notes, then I would, you know, remember that little bit that I would write down enough to be able to take a test, and then it would be gone, you know. I mean, that's what I would have to do. And I did it all the way to a master's degree, but I was determined, and and not everybody is able to do that. And I don't, you know, I was just really determined to do it, but it took every ounce of energy in me to do it. So, and and I don't think that people even understand like to put something like this together. It it's a lot more than the average podcaster, or a lot more than what you have to go through in order to get ready to go speak. Or, you know, I can remember one of the first times that you were gonna go speak and you were gonna get on an airplane and all this stuff, everything, all the steps were laid out for you. And I don't know. I mean, is it getting any easier? Is it getting a little bit better?

SPEAKER_02 36:40

Uh yeah, I still the hardest part is the pre-planning and putting everything in place and making sure that you know my flight arrives not six hours before the hotel allows check-in and things like that. Yeah, that that's that's still hard. It really is.

SPEAKER_00 36:59

It's the executive functioning that we don't have.

SPEAKER_02 37:03

Yes, yes, and it is the challenge. Yeah, I love challenges, so I keep doing it. Although, you know, it takes half the fun out of it. I like I like the writing, the the performing, the the piece, if you want to call it. I call them gigs because you know, I like to to rock my way through life. So um it's a gig. I still just try to have fun with it, and I do. I'm meeting so many people. It's incredible.

SPEAKER_00 37:33

That's what I love. You know, I mean, we have, like you said earlier, we have such big hearts, and we love meeting other people where they are. We want to hear their story, we want to make a difference, and we're change makers, and we have to work a little harder at it, but we're giving our all in order to do it. And I think, you know, I would love to hear you talk more about flying with broken wings and when it started and where you are now, and because there's so many people that are living with it, but are also caregivers of people who are helping people with FASD. And you're also helping those people as well. And I'm one of those now. I'm on both ends, and it's a whole lot, it's a lot harder to be a caregiver of somebody with FASD to then actually have it yourself. Because you know, that's me. I got it, I'm good, whatever, I'll figure it out. But it's ripping my heart out to help my child. And I adopted him when he was four, almost four, and he was nonverbal. And to see where he is now, I'm so proud of him. But you know, it's so much harder. And I really appreciate your group flying with broken wings. How are you reaching people? And what kind of uh differences and messages are you doing in your group on Facebook?

SPEAKER_02 38:59

Um, I again it's uh it's the the same basic mentality that um we're all equals in the group. Uh there are a lot of people on the spectrum. And yes, we do give precedence to the voices of people on the spectrum because we made a safe place where they can share not just what they've learned, but what they haven't learned yet. They can ask questions, they can share their fears, and this this helps, I think, the caregivers see us as people, not problems. So having that mix in there is very important. And um, of course, I'm I'm in charge of the educational component, and I try to put stuff out that not only helps us, but also helps the caregivers understand us better. So in in our own little way, it's it's where the the profession, there are a lot of professionals, and it's amazing the number of people who are also watching our conversations and how we take care of each other. We take care of caregivers, we take care of ourselves, how we take care of each other is I think what's making the difference. When someone comes in, okay, uh there are a lot of parenting groups out that out there that don't have the people they're talking about in the group. So parents are free to come in and rant, you know, I hate this, I hate that, my kid, blah blah blah. That does not fly in in the group very long, and I don't have to step in. Other people are like um that conversation is probably better in another group. They kindly try to tell the people that this isn't the place. This is the place that we all come to learn, and I learn constantly about other people on the spectrum, what they're dealing with every day, and things

Executive Function Homework And Burnout

SPEAKER_02 41:02

like that. And that helps me immensely in my work too, because I'm not good at the abstract, so I can't experience what somebody else is experiencing. So their version of FASD is as foreign to me as mine would be to them. However, when they talk and they explain, then I can understand. And that's the you know, the the basic thing. If you want to go back to the moms, when we know better, we can do better. And you know, so many times I I I love birth moms, they they come up to me and it's like you guys are changing the world. Yeah, something happened. Yeah, I dropped a cup of coffee one time too. That happened. It doesn't ruin my life now, and uh, I'm not saying you got you can compare the two at any um point in time. However, we can't dwell on it. We're here, we're living, we're we're breathing, we feel everything, we love being alive. Um I hate seeing that chipped away in people. So I have to speak out and I have to go there and I have to tell people there is a better way.

SPEAKER_00 42:16

Yeah. I think that you touched on something too, 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. And I'm not saying that those aren't a part of it. What I'm saying is the resilience factor is so strong. And I the the I always have the glasses half full take on things, and I don't know where that comes from. 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. And it's not something I'm even forcing myself to do, it's just there. And I just wake up the next day and I've got this really like let's go. And I don't know.

SPEAKER_02 43:15

No, you do know. Every day is a new day.

SPEAKER_00 43:20

Is that why?

SPEAKER_02 43:21

Is yes for for us when we wake up, it's a brand new day.

SPEAKER_00 43:27

Is it like short-term memory person on Saturday Night Live?

SPEAKER_02 43:32

Kind of, kind of like, yeah, it's kind of like Groundhog Day. It's like, yeah, however I felt yesterday, I'm probably gonna feel the same way tomorrow when I wake up. I'm happy, I'm ready to go. Like when I was a kid, that moment is still there. Um, when I sleep and I'm we're still trying to figure out if this is a trauma thing or a brain thing. I don't dream. I do not dream. 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.

SPEAKER_00 44:06

Like you've been tested, you've been tested, and you don't go into REM.

SPEAKER_02 44:11

Um I do, but when I go to sleep, my brain seems to shut off. It's black, it's like I don't, I'm not conscious of the length of time that I'm sleeping. It's like turning out a light, and I turn it on, and it's a brand new day. It's a really weird, it's definitely strange. 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. Then the memory starts to come up.

SPEAKER_00 44:44

Okay, that's really interesting because that 100% happens to me. 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. It doesn't come right when I wake up. And I never put that together before.

SPEAKER_02 45:11

I give myself, and I'm able to do this because I'm not raising kids, the grace of two hours automatically. And that's because my brain is like an old, you know, um, an old Windows computer from like 1990. It takes all the different processes starting up take time.

SPEAKER_01 45:33

Yeah.

SPEAKER_02 45:34

And I I call

Flying With Broken Wings Community Rules

SPEAKER_02 45:36

it. It's giving myself grace, understanding that don't maybe make make decisions in that first two hours, don't make me converse in those first two hours because I'm just trying to get everything online. 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. So yeah, I try um if I have like a 7 a.m. uh start for for an event, I'm way up four or five, and that's just to get my brain going.

SPEAKER_00 46:15

Yeah, I mean, I need that time too. I absolutely need that time. 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. He's next to go to the clinic, um, but he can't handle all the noises and the social stuff and everything. 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. And he's nine, but yeah, I mean, it's it's really difficult for him as well. And so uh we have quite the routine. We have a routine, and routine is very important to us, but like you were saying, you need that morning time. 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. I know what I need in order to start a productive day to be productive with him.

SPEAKER_02 47:23

It works for the kids too. I had a parent that I suggested that too. Her kids were um just fighting and melting down two boys around the same age going to school in the morning and getting them up early and just allowing them some quiet time each by themselves, it improved things immensely, and it also helped them in school because they weren't coming to school fighting with their brother.

SPEAKER_00 47:46

Did you have meltdowns?

SPEAKER_02 47:48

I wasn't allowed. Okay, if that makes any sense. 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, so I didn't have the luxury. If I melted down, we didn't have breakfast or nobody made lunch. So um, in those moments, I just had to learn to buckle down and uh yeah, I'd have my meltdown later. I'd go jump on trains to go to school. I used to run across the top of the boxcars back when they had the the running boards on the roofs. It's a long time ago. First time I got arrested, I was seven years old. I was running on a train and the cops caught me.

SPEAKER_00 48:39

You know what though? You you just proved something about who we are. What comes along a lot of times with FASD is also what we talked about very early, the trauma part of it. But I also had to take care of my mom. My dad had passed away, and she was my adopted mom, and I had to take care of her. 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. 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. There's so many layers that are there that are at and that we can do it. I mean, we're placed in situations that really are above us. It's hard for our brains to even do those things, but yet we're figuring it out. 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. 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.

Trauma Forgiveness And Dismaturity Explained

SPEAKER_00 50:06

And I think that that does carry on into who we become as adults.

SPEAKER_02 50:12

However, when I was in a safer environment, I would rage. I wouldn't just melt down, I would have rages. See, and you know, I think back, that was more than just what was going on in the moment. That was everything coming out, just this toxic slug. 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. I hurt myself.

SPEAKER_00 50:53

Yes, you hurt yourself.

SPEAKER_02 50:55

And that later told me that I was blaming myself for who I was. Like, I don't deserve to have this nice toy, smash kind of thing. Wasn't what I was thinking at the time, but looking back, I never hurt other people's stuff. Intentionally, occasionally there'd be collateral damage, you'd smash out the door, and a piece of wood flies and breaks a cup or something. That would be like but yeah, what I was doing was I was hurting myself.

SPEAKER_00 51:23

How long did it take you to be okay with who you were?

SPEAKER_02 51:29

It was after my diagnosis when I was told I could forgive myself. Up until that point, I just drove myself. I just wanted, you know, to end this this mortal toil kind of thing and just get it over with. I wasn't gonna take any active steps. But like there was no joy in life. I was a six assassin. I was a successful photographer, had many relationships, but they only went so far because I couldn't open up. The scariest thing anyone can ever say to me is I love you. Because when I was a kid, the people who said I love you were really saying, I'm gonna hurt you. I lived it too. I had to unlearn all of that.

SPEAKER_00 52:12

Yes.

SPEAKER_02 52:14

That's what I'm saying.

SPEAKER_00 52:16

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. She didn't want me. And there's all these different things that go along with that. 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. So he has a long time to work through it. And he just found out, because you know, that's another thing. How honest should you be with a child who's working through and finds out, well, what is FASD? What does that mean? And so, you know, we have tried to say things in a very simplistic way, which uh doesn't really offer a lot of blame anywhere, but he's very angry and that this is his brain. 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.

SPEAKER_02 53:34

Um, especially with uh someone of that age, we have to take into account a thing like called dismaturity. And that means different brain domains develop at different rates. So cognitive understanding may be way different than say uh actual physical age or executive function levels, all of these things are different. Um understand we need to understand first off where the person is emotionally and cognitively, and how they can take in that information. So it may start with um something happened and your brain is different, and then you just leave it, and then when the question comes, why is my brain different? 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, right? 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. Um, something happened to both my mom and I.

SPEAKER_00 55:06

Okay, but if they're asking, you should answer.

SPEAKER_02 55:10

Yes, absolutely, absolutely, but you don't want to overload them with information or a lot of emotional baggage. 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. We need because one of the worst things that you 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. 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. It wasn't intentional, et cetera.

SPEAKER_00 56:08

Yeah. And you also 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, completely different. And I I know that it was for me, and I I still feel like I'm half my age. They were told I was told when I was younger that you know I probably was about half my age. So when I was like 16, I was like an eight-year-old and things like that. And I I I still feel a lot younger than I really am.

SPEAKER_02 56:53

Oh, me too. Me too. Um, like I still laugh at poop jokes.

SPEAKER_00 56:59

I do too. But the you know, it's a duty. We have to laugh at those.

SPEAKER_02 57:05

Exactly. Exactly. And that doesn't necessarily ever lead leave us. It's not fake, it's you know, part of our personality, it's our dismaturity. If you look at uh like maturity, immaturity, that's a blanket, that's all of your functions, all of your brain domains. But dismaturity is like uh it's like a mountain range of highs and lows.

SPEAKER_00 57:28

Okay, talk about that though. What exactly is dysmaturity?

SPEAKER_02 57:33

Um see, I'm not really really up on this part right now.

SPEAKER_00 57:38

Okay, all right.

SPEAKER_02 57:39

Well, we have about 10 different brain domains, which are areas of function in our brain. 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. Um, cognitive function is uh is a brain domain. It's your understanding, your ability to communicate, you take that information in and utilize it properly or in a good way. Also, communicate in outwards. Um and all of these different domains coupled with chronological age, which is you know basically where we're all judged. If you look like you're an adult, people don't treat you like an adult, although what they can't see is you might have a cognitive age of, like you were saying, uh, 15, 14. Your emotional age, how you react emotionally, could be eight or ten. So part of the diagnostic process often identifies these through the Vineland adaptive scale and a number of other tests that are part of the diagnostic system. We're able to better judge like where the different levels would be. And I really wish I had the full list in front of me. It's it's really fascinating.