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Real Talk with Tina and Ann
Tina and Ann met as journalists covering a capital murder trial, 15 years ago. Tina has been a tv and radio personality and has three children. Ann has a master's in counseling and has worked in the jail system, was a director of a battered woman's shelter/rape crisis center, worked as an assistant director at a school for children with autism, worked with abused kids and is currently raising her three children who have autism. She also is autistic and was told would not graduate high school, but as you can see, she has accomplished so much more. The duo share their stories of overcoming and interview people who are making it, despite what has happened. This is more than just two moms sharing their lives. This is two women who have overcome some of life's hardest obstacles. Join us every Wednesday as we go through life's journey together. There is purpose in the pain and hope in the journey.
Real Talk with Tina and Ann
Beyond Shame: The Freedom of Hearing “It’s Not Your Fault with RJ Formanek on Living with FASD part 2
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
Welcome to Real Talk with Tina and Anne. 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. 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. RJ opens up about identity, relationships, support systems, and the daily work of showing up for yourself even when the world misunderstands you. 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. And it's good advice even if you don't know somebody with FASD. This is some powerful stuff. 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. Thank you, RJ Formanac from Flying with Broken Wings and Red Shoes Rock. Look it up. They are both great spaces for anybody with FASD or anybody who knows somebody with FASD. 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. So listen to the whole thing. It's really worth it. This is part two. 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_04:No, you do know. Every day is a new day. Is that why? Yes. For for us, when we wake up, it's a brand new day.
SPEAKER_00:Is it like short-term memory person on Saturday Night Live?
SPEAKER_04:Kind of, kind of like, yeah, it's kind of like Groundhog Day. It's like, yeah, however I felt yesterday, I'm probably going to 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:Like you've been tested, you've been tested, and you don't go into REM.
SPEAKER_04: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, 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.
SPEAKER_00: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_04:I 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 uh an old, you know, um an old Windows computer from like 1990. It takes all the different processes starting up take time.
SPEAKER_03:Yeah.
SPEAKER_04:And I I call it it's giving myself grace, understanding that don't make me 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 an event, I'm way up four or five. And that's just to get my brain going.
SPEAKER_00:Yeah, I mean it 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 to um to do life, 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_04:It works for the kids too. I had a parent that I suggested that to. 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. And it also helped them in school because they weren't coming to school fighting with their brother.
SPEAKER_00:Did you have meltdowns?
SPEAKER_04: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: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. And I think that that does carry on into who we become as adults.
SPEAKER_04:Oh, however, when I was in a safer environment, I would rage. I wouldn't just melt down, I would have rage. See, and you know, I think back, that was more than just what was going on in the moment. That was everything coming out, just this toxic slut and uh that busted doors, um, furniture, and the thing that was most telling was the stuff that I destroyed that I actively went after was mine. Wasn't other people's stuff. I hurt myself.
SPEAKER_00:Yes, you hurt yourself.
SPEAKER_04: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. Not 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 but yeah, what I was doing was I was hurting myself.
SPEAKER_00:How long did it take you to be okay with who you were?
SPEAKER_04: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. 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 actually. I had to unlearn all of that.
SPEAKER_00:Yes. That's what I'm saying. 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, uh, 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_04: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 so understand we need to understand first off where the person is emotionally and cognitively, and how they can take in that information.
unknown:Right.
SPEAKER_04: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.
SPEAKER_02:Right.
SPEAKER_04: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:Okay, but if they're asking, you should answer.
SPEAKER_04: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 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. 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.
SPEAKER_00:Yeah. 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. 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_04:Oh, me too. Me too. Um, like I still laugh at poop jokes.
SPEAKER_00:I do too, but they you know, it's a duty. We have to laugh at those.
SPEAKER_04:Exactly. Exactly, and that doesn't necessarily ever leave leave us. It's not fake, it's you know, part of our personality, it's our dismaturity. If you look at uh like maturity, immaturity, that's a blanket, that's all of your functions, all of your brain domains. But dismaturity is like uh it's like a mountain range of highs and lows.
SPEAKER_00:Okay, talk about that though. What exactly is dysmaturity?
SPEAKER_04: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, not words. 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 are gonna treat you like an adult. Although what they can 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 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. 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, and it really helps when you're trying to look at brain function. 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. 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.
SPEAKER_00:The the tough part of it is their peers. 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. And when in it also, you know, there's the autism and ADHD. And um, on top of it, I also those are my kids. And then on top of it, I also had um the working memory and uh the cognitive stuff as and they do too. And the eye, I had um like no-depth perception, and my um eyes don't converge, they don't see together. 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. The brain is kind and it figures it out, you know. But it's it's really interesting when you have this A-Z bunch of stuff all falling under what alcohol did.
SPEAKER_04:Research done at the University of British Columbia has identified 428 comorbidities that come with FASD.
SPEAKER_00:Yes.
SPEAKER_04: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.
SPEAKER_00:Yeah. So I mean, it it does, it it deeply affects so many different systems.
SPEAKER_04:So I have a presentation I've been giving, I've rewritten it, I think, three times now. It's called It's Complicated. FASD, it's complicated because it really is. It's you know, you don't have to learn everything about FASD. That's that's the good thing. You just need to learn about your FASD, where you're affected, and you know, we can take that. But it's unfortunate that we have to do that, and we have to teach ourselves at this point in a lot of cases.
SPEAKER_00:Yeah. Well, the clinic actually broke it down pretty well for the school, and I really appreciated that. 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. 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. And and anyway, that's fine. They can have that. But then when the doctor, doctors, big top neurological people um come out and say, 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.
SPEAKER_04:Um, we're seeing a lot more education. I think we still need a long ways to go in the general education system. But it's slowly starting to happen that um it's filtering down to uh understanding different learning styles, even and things like that. 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. I have I learn experientially. I have to screw it up, do it wrong the first time, and then I can do it right. And that was a frustration I've always had to live with. You know, if if to open the door, you gotta turn it right, I will always turn left first. And I just I I've had to understand and accept that. That I, you know, I I screw up the first time every time.
SPEAKER_00:Me too. You know, it's just something Oh, I know it doesn't turn that way.
SPEAKER_04:Why do I keep trying? But I do.
SPEAKER_00:Yes, yes, and it's not intentional. That's a thing. Nope.
SPEAKER_04:Nope. It's just the way my brain works. 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. It doesn't stop me.
SPEAKER_00:Do you love do you love yourself right where you are in life? Uh strangely enough, yeah.
SPEAKER_04:I'm I've always think I've always been my own biggest fan. 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. 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. Like you were talking about going to school, the amount of work that I had to do. So even though to other people that might not be a big thing, to me, that was like, yeah, that's an accomplishment.
SPEAKER_00:I can I can wear that. But look at you now, RJ. Look at you going all around the place. You're like an FASD ambassador, you are FASD famous, you know. I mean, you really are. And it's amazing what you have accomplished.
SPEAKER_04:Yeah. Yeah, it it kind of blows my mind. Um it's, I don't know, joy of acceptance. People can see that, you know, it's never gonna be perfect. Nobody's life is, whether they have FASD or not. And life is what you make it, is the way I am. You know, I struggled forever and ever, and I'm going through a good patch. It's the way I look at it because I know nothing is permanent. As I was saying, I could be homeless tomorrow, but right now I'm a very happy guy. And yes, I like me.
SPEAKER_00:What made you want to take your life and everything? And this podcast is always about turning uh pain into purpose. What made you want to do that and actually become an advocate for this and help others?
SPEAKER_04:I don't know. I don't know.
SPEAKER_00:It just happened?
SPEAKER_04:It was uh a drive. 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. So this is just another one. 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. And the stuff I saw online was horrifying. 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. And it wasn't only opinions. I was seeing professionals who were telling people, well, there's not much you can do for them. 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. I had been a successful photographer for a national TV network. I'd done that for years. I was able to hold a job, I was able to have relationships, I have two kids. It did not represent me as a person with FASD at all. So um I have a hungry spirit. I had to learn more and I had to learn more. And the more I learned, I began to see how wrong that talk-down view of us was. And yeah, I had to speak out. I started stomping around in my red shoes and saying, Hey, you guys, it ain't so. Luckily, um, Jody Culp in the States saw that and she asked me why I was doing this. And I told her because, and she liked it. 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. 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. Everyone in the box says, go left. We say, let's take a look at what's on the right, maybe. Might see something different.
SPEAKER_00:Yeah. 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. And I just had this spirit in me that said, Well, yes, I am. You know, they said I wouldn't be able to hit a ball. I got one or two home runs. Uh, they said I wouldn't be able to ride a bike. I rode a unicycle and a parade. I was determined. I'm like, not a bike. Okay, give me one wheel. So that's just the way that I operate, and I still do today. So what I do want to hear though, more about I see the red shoe behind you. Tell me about red shoes rock.
SPEAKER_04:Um well, the red shoes, they were a personal statement. Um, when I started speaking publicly, I took the armor of the people who had always kept me down. I put on a suit and a nice tie and everything like that. 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. Now, theoretically, if you do something wrong or something that's not acceptable, you are then given a nice healthy dose of shame. When I get shame, I look down. I look down and I see those red shoes, and I know that is not warranted. I look up, I've got fire in my eyes. Come on, guys, let's go. And that's where the conversation. Begins. For me, it was something because I didn't have someone, a support person or anyone like that. I um largely with the help of friends, started, you know, I I basically bankrolled my first public speech myself. I paid for it. We got a church basement for free kind of thing, and we invited people and the place sold out. It was amazing. So just getting those shoes and having them wearing them with a suit, which is still gets a lot of looks. Like when you're in the downtown financial district, and all these other guys are all dressed up. And they look down and they see these silly runners. They're like, oh, one of them, huh? Yeah. The original.
SPEAKER_00:I love it. I still wear my Converse all the time. That's just who I am. Yeah, oh, for sure. And the the Red Shoes is it really represents who you are. It represents your personality and everything. I love it.
SPEAKER_04:Let's go out and get them.
SPEAKER_00:Do you know how how big is Red Shoes um rocks? I mean it's it's pretty big.
SPEAKER_04:It is definitely international. Um it's huge in areas like uh Australia and New Zealand. Um we have a book. Oh my god. Do you know about about our the book from Germany?
SPEAKER_03:No.
SPEAKER_00:I don't. Okay.
SPEAKER_04:I have so many neat things going on.
SPEAKER_03:Oh my gosh.
SPEAKER_04:Okay. Woman in Germany wrote this. It's all about red shoes. And it's called the Red Shoes of the Wandering Mouse. Is it in is it in English? Yes. This is an English translation. And it tells the story of a mouse who uh found some red shoes in the adventures of this mouse. Now, what's really neat about it is it's not based on me specifically. Oh, I like that red shoes though.
SPEAKER_02:Yes.
SPEAKER_04:But um the author did reach out to me. Have you ever seen the the picture of me hanging out of a tree? I think so. I think so. So did she.
SPEAKER_00:Oh my gosh. So what is what is the name of the of the character in there? What what is the name?
SPEAKER_04:It's a mouse and a hedgehog. So um it's the wandering mouse. The red shoes are.
SPEAKER_00:Does it have anything to do with FASD? Oh, absolutely.
SPEAKER_04:In fact, a whole section on why red shoes, all about me, and why I started.
SPEAKER_00:Oh my gosh, RJ, that is so amazing.
SPEAKER_04:And it even ends with a little picture of me in there.
SPEAKER_00:Do you know what that picture of you reminds me of?
SPEAKER_04:What's that?
SPEAKER_00:Oh, what were we called? I don't know. Our initial, our uh initial podcast, if that's what you want to call it. Where and and you were Swiss Cheese Brain Effect? The Swiss Cheese Brain Effect.
SPEAKER_04:Yes. Or how I learned to live with FSD, I think, was roughly. It had a super huge, long title.
SPEAKER_00:Yeah, it did, but it was super fun. And you had that coat. We used that like figure to go along with our little uh Facebook group that we had, and then we started the Yeah. I mean, I think that that's so fun. Do you see how huge you are, what you've created, how huge this movement is?
SPEAKER_04:Yeah, it's it's extremely humbling. Um, I love what people have done with it. And um sometimes it's like, who is that guy? Who did it? It's just like, wow, that can't be me. Sometimes I have to give my my my head a shake and go, yeah, I have some value in the world.
SPEAKER_00:Who knew? Oh my. 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. 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. Because look at us, we both have that same diagnosis. We were both told all the negatives, but look at us, look what we've been able to accomplish. I think that that's so amazing. I am really proud of you and how far that you've come, RJ.
SPEAKER_04:Right back at you, Mustang, Annie.
SPEAKER_00:See, see, that's that was yes. See, we've always been really good together.
SPEAKER_04:Uh oh, you and your red Mustang, classic.
SPEAKER_00:Which because I am a soccer mom now, I have a soccer van that seven people. This is not me. I refuse to identify as like any kind of a soccer mom driving a van, but I am still Mustang Annie riding in this van. I am still that person.
SPEAKER_04:Exactly. Exactly.
SPEAKER_00:So, what do you want people to know about FASD? Like, what what how can you help people who have FASD? What do you want them to know, RJ? It's not your fault.
SPEAKER_04:It's the creator gave us all individually challenges, um, some more than others. 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. But when we're able to go with talents and follow those roads, and the gifts can become apparent. 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. Brains develop at a different pace for people with FASD. So often we don't even hit our stride until we're in our 40s.
SPEAKER_00:Oh, do you know? That's really interesting that you say that because I feel more capable now than I did when I was younger. 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. And now I can do them. It's so crazy.
SPEAKER_04: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. We're still building brain cells well into our late 40s, apparently, because the human body, the creator is amazing. Um, our brains are what we call neuroplastic, plastic meaning malleable. So it's often trying to, you know, fix things, as you were talking about earlier. The brain can do an amazing job just on its own, trying to make things work. Yeah, we found that the trajectory for people with FASD is a lot longer. There's actually a catch-up period that has been identified between 30 and 40. It's a brain process called myelination. Now, imagine um our thought processes as gravel roads. We think a little slowly, our processing's a little slow. So you got this gravel road, you have another gravel road, another thought process, another thought process. 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. And when that happens, there's a fatty subsubstance called myelin that's built into this. It speeds up the transmission of thoughts. It's a catch-up period. Our thinking gets clearer, we're better able to do things and put things together. And that generally seems to be happening between 30 and 40. Now we need a lot more research on it. 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.
SPEAKER_00:How do you well, first off, I want to say this. When I was a kid, I um really wasn't able to put sentences together very well. And now I'm doing a podcast. It took decades for me to be able to do this. 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. I used to write notes to people and give it to them when I was younger, even in my 20s. 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. Because I trusted that. But and I knew I couldn't trust my own mouth to for it to say what I really wanted to. But now I'm much better at it. It it took that many years for my brain to develop that part of the brain for me to be able to do it.
SPEAKER_04:Yet you were able to write. And now, here's the flip side of that coin. 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. Because I've always been able to talk. Yeah, even till that point, whenever I tried to write, I was pretending to be somebody else. It wasn't authentic, it felt I couldn't even stand it. I even to this day, I cannot stand reading my old writing because I was trying to be somebody else. But through our conversations and everything, I learned from you that it's possible to just talk and use that. And that changed everything because now I'm able to talk out what I want to say and I write it down. Yeah, just be like the flip side of what you're talking about.
SPEAKER_00:Mm-hmm.
SPEAKER_04:That's kind of cool.
SPEAKER_00:Well, I think that we were meant to meet.
SPEAKER_02:Absolutely.
SPEAKER_00:Because I think that we both helped each other get to where we are today, you know, long years ago, but we we really believed in each other. And I think that we still really believe in each other, and we will always be each other's cheerleaders. 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. I what how many crowds? I mean, like, how often do you speak? Like, what are the crowd sizes that you speak in front of?
SPEAKER_04:Oh, I actually tend to like to accept a lot of smaller and medium-sized informants or less. Um, um I love doing like a class size, sometimes 20 or 30. Those are those are great. They're they're very interactive. But you know, I I can also talk to a thousand people at the same time. So for me, the crowd size isn't so much the big thing as being able to get in intimacy with the crowd. Um the the first thing I I tell everyone is number one, if you got it, give me a wireless mic. Number two, I'm gonna go away from the podium. And then I'm going to walk to the audience. If it's a riser or something, I can walk into the audience. If I have to go down the stairs and decide that's distracting, I can't do it. So a lot of it is dependent on where I am and how it's set up. But um, for me, I don't want the prosemium arch, that arch on the stage, to be a separator. Because I don't want to be separate from the people I'm talking to. If possible, I want to have them around so we can have a circle of patients. 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. And uh, you also have to remember, I also did a stint on stage as a drummer when I was younger. So that's true. Um sort of on stage and not even seeing the audience sometimes.
SPEAKER_00:Yes, yeah. 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. Do you consider yourself a life coach? Is that what you do? Do you work one-on-one with people at all?
SPEAKER_04:Um, I have mentored people over the years, okay, but I don't coach. Coaching is short term, and when I take someone on, it's often for years. 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. 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. And that personal lost. 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. I don't just, you know, let people go. And when they're ready to move on to, you know, other supports and things like that, that's their decision.
SPEAKER_00:Mm-hmm. That's really awesome. Um, that you do that. Um again, there's no limit to what you're doing. How can families and individuals start advocating in their own communities?
SPEAKER_04:Oh, um, it starts with speaking your own truth, your own experience on how you see things. 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. 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. And then if you have, you know, a story to tell or whatever, that can work into us. So often it it starts with um support groups that do public outreach and public events.
SPEAKER_00:Okay. Well, we need more of those in the United States. We just really don't have them.
SPEAKER_04:I I that's the thing that really thrills me the most um at this previous conference I was at. There were like 110 people with FASD who were there. Advocates, people who work in the system, people, parents, and things like that. It was incredible to see this giant wall of advocacy. And yeah, I feel really good when I see all these people coming up behind because it was pretty lonely for a long time. There were only a few of us who were out there stomping around, going to stage the stage. And the most amazing thing about this, all this advocacy, and it's not a competitive arena. It's not about who's the best who got more people or whatever. We help each other. And I've never worked anywhere where we're not competing with each other. 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.
SPEAKER_00:So we know a lot more now than we did, would you say? I mean, is there an impact, would you say, with all the work that you're doing?
SPEAKER_04:Oh, absolutely, absolutely. It's even um how many people have never even discussed the possibility with their or even with their physician? Uh one of the big problems that we have are physicians who are not trained. And then even worse, we have physicians who are not trained but think they are. 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. We got all the time in the world to do it, dude.
SPEAKER_00:Yeah. Well, I mean, in the indigenous population, there is a lot of FASD, is it not? I mean, and and I don't know where that stemmed from, or maybe that's just a myth. I'm not really sure. Is that a myth?
SPEAKER_04:That actually is uh a horrible stigma.
SPEAKER_00:Okay.
SPEAKER_04:Um it's more based on the fact that our population size is so small.
unknown:Okay.
SPEAKER_04: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. 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. 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. We're better able to gauge that. Europeans grew up with it, it's been generational. We rarely had you know a few fermented fermented berries or something in the fall would be our alcohol exposure. So, and because of that, we're like the canary in the coal mine, and the research was initially done on native people. 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. FASD is real and it affects everyone, every group.
SPEAKER_00:Yeah, yeah, it really does.
SPEAKER_04:Now there are the exceptions, um, say like Amish and other groups that historically do not partake in alcohol. However, kids are kids, and things do happen, and no particular group can say there's no FASD. I've heard groups say that, and like no, human beings are human beings, they're gonna experiment, things are gonna happen.
SPEAKER_00:And it's it's so much wider than we could ever put a number on. 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.
SPEAKER_04:Mm-hmm. Oh, yeah. Um I would think that one day we're gonna be looking at 25%, either FASD or fetal alcohol affected.
SPEAKER_00:Right. Okay.
SPEAKER_04: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.
SPEAKER_00:Okay. Is that what that means?
SPEAKER_04: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. That can change due to alcohol exposure in the parent.
SPEAKER_00:Okay, so the parent has it, and so then they nobody drank, but they do have effects because the parent had it.
SPEAKER_04:Some can, and research is indicating it's possible.
SPEAKER_00:That would be the genetic piece, right? I mean, I would think that there would be some genes that would be passed down.
SPEAKER_04:There is an intergenerational effect, even if there is no alcohol directly indicated, it can come from previous generations. 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.
SPEAKER_00:You know, this has been such a great conversation. I have so loved having you on. I mean, it just I want to do this again. I mean, I think that for one, for one thing, we're really good together. 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. And you are such an amazing mouthpiece. So, how can they contact you? Red shoes rock, flying with broken wings, and all the stuff.
SPEAKER_04:Yep, that's it. I'm everywhere. It's it's easy to find me. Best place, of course, is on Facebook because I monitor, I run the group, and I'm in like an active admin. So if you can message me on Facebook, that's usually the quickest way. My email is out everywhere, mrstartpointrod at gmail.com. Um, I'm easy to get a hold of if you're looking for me. And it if it gets really difficult, find someone that knows me. They'll send you to me. It's easy.
SPEAKER_00:Yeah, they can find me. I can send them to you. Everybody does know RJ, or I could say Rod.
SPEAKER_04:Absolutely. You absolutely could.
SPEAKER_00:Because I know what RJ stands for.
SPEAKER_04:So do I.
SPEAKER_00:Any more information about FASD before I close? Anything else you want to say?
SPEAKER_04:Tomorrow's another day. Tomorrow is always another day. No matter how hard it gets today, tomorrow is another day.
SPEAKER_00:My thing is look at you. Look at RJ Formanac. Look at what he's accomplishing. 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. 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. I don't want shame and trauma to define anybody that has FASD. I think that that's one of my biggest messages. And that you can't. Yeah. And that you can. You can. Don't let anybody tell you that you can't. We might just need a little bit more time to do it. We might just need a little bit more processing time. We might be able to just, you know, we might forget and then have to relearn it. But you know what? We can.
unknown:Yeah.
SPEAKER_04:All we're asking for is the chance, and we're gonna knock your socks off.
SPEAKER_00:Well, RJ, thank you so much for being here today and for all that you do. You have given so many people, myself included, language, community, and hope for our listeners. If you or someone you love is living with FASD, please know that you are not alone. There's a whole community out there walking this same path. 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. And as always, thank you for listening to Real Talk with Tina and Anne. 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. So thank you, RJ, for being on today. I love you, brother.
SPEAKER_04:I love you. It's been a pleasure. Let's do it again.
