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
Brain Wiring, Not Character Flaws; Symptoms, not Bad Behavior with RJ Formanek
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Ever watch someone recite the rules and still miss the first step? We dive into that gap with FASD advocate RJ Formanek to reveal what’s actually happening under the surface —and why replacing blame with understanding can change a life. We’re talking brain wiring, not character flaws; symptoms, not “bad behavior.” Through raw stories and clear examples, we map how memory, language, and sensory processing collide in real time and why so many kids and adults feel mislabeled, misunderstood, and exhausted by systems built for different brains.
RJ shares his late diagnosis at 47 and the identity whiplash that followed, from internalizing “I’m bad” to discovering empathy, community, and purpose. Together, we unpack dysmaturity—the mismatch between age and functional skills across executive function, social understanding, daily living, and emotions. You’ll hear how someone can speak like a college grad but process like a seventh grader, and how that mismatch derails classrooms, workplaces, and families when expectations don’t match reality.
We move from theory to tools: how to externalize memory with visuals and checklists, use speech-to-text to bypass motor barriers, shorten instructions, and build movement and breaks into the day. We explore expressive versus receptive language gaps, why abstract idioms tank comprehension, and how to pace and simplify without condescension. We also get honest about sensory overload—crowded rooms, forced eye contact, bright lights—and how small environmental shifts can prevent meltdowns and preserve dignity.
The big takeaway: connection is protective. Consistency, curiosity, and equity open doors that punishment slams shut. If you’re a parent, teacher, clinician, or someone who has always felt “different,” this conversation offers a compassionate roadmap for support that actually works—and a new way to see behavior as communication from a differently wired brain.
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RJ’s Late Diagnosis And Identity Shift
SPEAKER_00Welcome to Real Talk with Tina and Anne. I am Anne. And today I have somebody really special on. He really is like a brother to me. But have you ever wondered why someone can know the rule, repeat the rule, and still struggle to follow it? Today's episode is about what happens when the brain develops differently and why that deserves understanding and not punishment. We're talking about neurology, not character, brain wiring, not behavior choices. And we're doing that with someone who knows this firsthand, RJ Fortnak. I mean, I just love him so much. RJ is one of the most recognized FASD advocates, and he lives with fetal alcohol spectrum disorder, as do I. And I don't talk about it that often, but I am not ashamed. I was formally diagnosed through hospital testing, which is not an easy process to go through. And three of my kids also have it. I adopted them at two months, 18 months, and three years old. And I can tell you, it really is a spectrum. It impacts everyone differently, depending on which area of the brain was affected. RJ, you've been on the show before, like I said, but I'd love for our listeners to hear your story a little bit again. You run Flying with Broken Wings, a global FASD community, and your advocacy work through Red Shoes Rock has helped educate countless families and professionals. And you also had a book written about you. Tell us what FASD looks like in your life and when you first realized that you were different from your peers.
SPEAKER_03Well, FASD for me was um because I was diagnosed at the age of 47. Right. It was I had no idea what it was. And um, all of my life I was um relying on the people around me to describe who I was to me, because I really didn't know I was growing up and my brain was a little different. People didn't talk to me like they talked to other people, so I was largely left to form opinions even about myself through their eyes, which was a total mistake because, of course, I was labeled as bad, and I wasn't only told that what I did was bad, I was told I was bad. I started to believe that, and uh, for many years my trajectory was largely negative because I thought I that was, you know, what I was gonna be in life. I thought that was my future, that I was gonna be a criminal, a bad guy, and stuff like that. So um those descriptions were very harmful, and I at one point started to realize as I grew older into my early um twenties, I started realizing that that's not me. That I'm I have empathy and feeling, and I like I like to help people. I don't want to hurt anyone or do anything like that. So I began to question their description of me. And at one point, when I was about 24, 25, you know, I said, you know what? They're wrong, and I'm just gonna be me. So I was just the weirdo at that point. I wasn't a bad guy, I was just a weirdo, and I owned it and I loved it because I was the one in the room who would always say something that was totally unexpected. And that was something that, you know, just came to me naturally because I think differently.
SPEAKER_00It just makes me so upset for you and for me and uh one of my kids especially. You know, it just we aren't bad. We just are trying to do our best to make it in a world that wasn't made for us. And our brains are just so wired so differently that it really is hard for us to understand things that are going on in the room. It's hard to understand the expectations, and we're trying to do things right and they aren't coming out right. You know, I mean, I even when it comes, and we'll talk about all of this in the podcast, this is an absolute perfect place to start because, you know, we're so misunderstood. I think that that's really what it comes down to. We were are we're not bad, we're misunderstood.
From “Bad Kid” To Advocate
SPEAKER_03Uh absolutely. And one of the best pieces of advice that I've ever heard for caregivers and for professionals, don't talk about behaviors. That word equals symptoms. Because when you know it's a brain-based disability, a largely brain-based disability, and you call something that would normally be called a behavior, he's been behaving badly. No, he's showing symptoms that something is not right here. Simple understanding like that can reframe the whole conversation for everyone. Like I said, it's very good for parents and caregivers to remind themselves in those moments. This is a symptom, it's not about me. This is a symptom. And you need to look further into you know what can be done.
SPEAKER_00Yeah, I I have looked at my kids, and one of the worst things that we can do is what happened to you, RJ, is that to label somebody bad and other people's definitions can become our definitions, and we really start to own them. And then it's less like, okay, I'm bad. All right, let's be bad then. You know, I mean, you just give into it after a while, but that really isn't who you were. And actually, I loved what you said about, you know, in your 20s, you made that decision, but then also you became an advocate. You have really been the front person for FASD. And what made you decide to become that person?
Why Connection Beats Consequences
SPEAKER_03Um, when I got my diagnosis, I knew nothing about FASD. Initially, I thought it was a kid's disease because fetal something babies got and then got over. And then when I started to research it, I noticed the preponderance of um opinions about us were very negative. And I knew how I had struggled just to be understood growing up, and how I was misunderstood, and that sort of um said, no, no, other people, other kids growing up now are dealing with what I dealt with. And so if I had the ability to speak up and say, uh, no, you're getting it all wrong, guys. I'm gonna do it. And it snowballed from there because so many parents were looking for answers that at that point didn't exist. And we have come so far in the last 20 years from where it was from um, you know, there's no hope for them. Uh, you know, when they age out, just let them go because, you know, they're gonna sink or swam and there's nothing you can do. There is a lot we can do. Connections are so important to us. It is that's important. Those family connections that are often severed at 20, that is so terrible for all of our kids and young adults. They need those connections, even if you're not getting along, just knowing that you're still there, that you're still interested in maybe you.
Dismaturity Across Life Domains
SPEAKER_00You know, it comes back again to who we really are, and we are very connected to people. We can see things that other people can't see. I really do believe that we have such a sensitiveness about us. And connection just comes out differently with us, but we really do want it. And we really do love and care for people. Um, my one son is probably one of the most sensitive, caring people that I know, and he has it pretty F-A-S-D pretty significantly. So I want to get into the don't the brain domains that make up who we are, because this is really interesting to me. And as I went through these, I just went check, check, check, check. I was just like, are you kidding me? I they could have had my picture right next to this. I mean, it's really unbelievable how much it describes who we are, not who we are as a person, because we're still people. It's like, why are we so different? Because we're still people, you know, we still are people and we still are represented by our um our personality and just who we are. You know, we still have all those traits too. And FASD is not all who we are. We are still a person, it's just a part of who we are.
SPEAKER_03So this gives um when people have an understanding of the different brain domains and how they're affected, it gives them a roadmap, and we're going back to not behaviors, symptoms. Then you can start to identify maybe where someone is struggling.
SPEAKER_00Yeah, and I want to do I want to say this clearly. It's not personality flaws, these are brain-based, and like we've been talking about, this is all centered within the domains and behavior is a communication. Domains help explain the why.
SPEAKER_03I also want to do a bit of framing with dismaturity. Okay, because that's not a brain domain, okay. That's something that we noticed with the preponderance of people with FASD specifically. Um now that that means that if I'm going to describe it, you can have someone who is say 20 years old physically, but if you really look into it, their emotional maturity, their reactions could be that of a 14-year-old, a 13-year-old. Um their living skills might be that of an 8 to 10-year-old cooking, cleaning, um, taking care of the yard, and um those sort of things. And their cognition might be really um hard to discover. So you you look at their language skills, but they're 20 years old. Their language skills are off the chart. They're like 25, 30 year old, they talk like a professor. However, when you question them, you soon find that their understanding is only that of maybe a 10 or a 12-year-old, not of that 25-year-old or 30-year-old who think you're speaking. Um another clue are social skills, and often we don't understand social cues. We don't know, you know, when we're supposed to stand or sit and take our hat off, or say yes, sir, no, sir, thank you, those sort of things. And those that could be like that of a 15-year-old, and then we get to executive function, which could also be of a 10-year-old. So you're looking at a 20-year-old who talks really well, but when you start asking them and getting into it, you start to very quickly see that maybe their emotional response is what we would call immature, that they um might respond emotionally to something in the way that a teen would, and that they're not really understanding even the words that they're saying.
SPEAKER_04Oh my gosh.
SPEAKER_03So that's a difficult thing to tease out, but dismaturity is important to recognize right off the top.
Academic Barriers And Learning Styles
SPEAKER_00All of dismaturity is woven through all of the domains. I mean, it affects every single part of who we are, how we take in information and how we, you know, execute that. And it's just, I remember being 20 and feeling like I was 10 or less. And people always looked at my reactions to things as if I was different, as if I was immature, and I really was. I mean, I still, and we we talked about this a little bit the last time you were on it. We still think, you know, farts and stuff like that are funny. I mean, yes, we do. And but, you know, I mean, that's just part of being goofy, and we're both goofy.
SPEAKER_03The uh description of a dismajurity is a snapshot, and that changes too. Like, um, we have a rule of thumb, if you don't have those exact numbers for a child, say someone under 14, we have their crow from their chronological age for a lot of these functions, just routinely. We don't have the numbers, but that changes as we get older. So you'll be looking at a 40-year-old, and you don't have his cognitive abilities because of his age. So that changes as we grow older as well.
SPEAKER_00Right, right. I finally feel like I'm an adult. You know, that's really crazy, but I do. I feel like I can actually function as an adult now. And I was trying to fake it for years, but I finally feel like I can.
SPEAKER_03I'm I'm getting there myself. It's really an interesting feeling. It's taken a while and it's been a lot of masking and uh bravado, but uh, you know, hey, we're we're we're still making it.
SPEAKER_00I want to start with academic achievement and what it looks like. Reading, math, abstract concepts are so difficult to understand for kids and adults with FASD. So can you talk about that?
Support Over Punishment At School And Home
SPEAKER_03Well, um uh the the writing part is often um a mixture of things. Now, FASD specifically comes with 428 comorbidities. There are little gifts that come along with it, and some of them involve motor function. So getting the message from the eyes and the brain through might be a challenge. And writing might end up forming something different than what we're used to seeing. Now, I went to school in a time when they they broke your fingers if you didn't hold the pen or the pencil the right way to yell at you like this or whatever. Sure. Yeah. Um, not a great way to learn, I gotta tell you. My my handwriting is still horrible. But um that also can be um when we're talking about academic achievement, what are we talking about? If you read something, you have to like theoretically, you're reading it, you're understanding it. That involves cognition, going back to the dismaturity. That also involves attention, and it's hard to get for us like a whole page of words. I can't just I have to look away every now and then just to get my eyes back, and then I focus and I read a little bit and I look away. But right it's tiring, it's difficult. So that and it's coupled with memory deficits because then you're just expected to remember what you just wrote or what you just read, and as we're going to discuss, memory deficits are a very big thing. Now we talk about abstract concepts, uh, cart before the horse. Um you know, any of these um sayings that that we have that don't necessarily make concrete sense because um for many of us jokes are hard because they're abstract, they're talking about what-ifs or things, and our brain understands that if this is this is here, I understand this, I don't understand another flavor or something that's somewhere else. This I understand, that's concrete to me. So with kids especially and growing up, those abstract concepts can get very, very confusing. So that leads to a lot of questioning what we've heard, what we know, and that slows down brain function because our confused.
SPEAKER_00Right, right. You know, my my 12-year-old has significant needs, and the reality is that he may never fully live independently, and he can sometimes read words, in fact, he can read words, but like you were saying, the comprehension just isn't there. He has no idea what he read. And basic academics are really a struggle, and it brings me back even to my childhood. You know, as a child, I couldn't understand what I read. It didn't matter, the words were all over the page. I think that I also had um dyslexia because my sentences were just all one long, there were no spaces, letters were all over the place. But as you know, I taught myself how to read, I taught myself how to learn, and I did it all the way to a master's degree after they told me I wouldn't graduate high school. So I was, you know, I'm actually really proud of myself for that. But um should be. Yeah. And I at that time in our lives, you know, there wasn't a lot known about this. There was no labels on this, even with the comor, como how do you say comorbidities that go along with it and and the autism that I have also been diagnosed with, you know, I mean, those things just were not known that well about. And since then, because I was determined and because you were determined, we taught ourselves how to do these things. And I really wasn't able to comprehend anything when I read it, but now I can enough to do to read the books and interview authors with all the notes in front of me. Do you see people build cognitive skills over time through strategy and repetition and support? And how do we understand what growth might look like for kids like my son, even if the path is different?
Cognition, Working Memory, And Inner Monologues
SPEAKER_03Oh, absolutely. Even just um we we understand that for what we call neurotypical people or people who are not neurodivergent, that adult brain development tends to slow down at around age 25. Ours continues much longer, up until like through into the 40s. So we do see that's why I was talking about earlier the um dismaturity being a snapshot in time because our brains continue developing far longer than our peers. So, in that time, not only is that there that development, and with hopefully more people becoming informed, they're they're to understand, and we're seeing um people much earlier coming to terms with a having FASD, understanding what it is, and learning um ways to uh to effectively live with it with without it um not to be dramatic, ruining your life, because um we have to do a lot of work, that's absolutely for sure. Just to get into society and just be around. But it as we get older, we begin to understand the rules a little more, and you know, when to take your hat off and when to say yes, sir and no, sir. And yeah, I see a lot of that, but um how you initially see it might be slow, it might be just little things here and there um starting to pick up after themselves, or um quoting movies or TV shows effectively, um starting to doodle, doing art, um, starting to express themselves more as they feel more safe and secure, and their brain starts to form, it might form in a creative way. Not all of us are going to be math geniuses, but we have the most incredible authors, um uh artists, um writers from the FASD world that uh you are your prime example. If it wasn't for the way that I understood you through your writing, I don't think I could write the way that I do because your writing gave me freedom to be myself.
SPEAKER_00I love that story. Because we were working so closely together, and I had no idea that you didn't know how how well you could write.
SPEAKER_03No. Um my my writing was always robotic and not there was no humanity in it. I didn't know how to be a human. Much the the same as we're gonna talk about um uh affect function at at some point. That includes my face. I didn't know how to smile naturally. I knew how to scroll. But that was something that I had to learn. And this was all as growing through my twenties and thirties, these things started falling in place. It would have helped if I had someone who understood to help me. I had to figure it out on my own. Yeah. But uh there we are.
SPEAKER_00Yeah, I always had to watch other people. You know, I I had to going into situations, how do I act? Uh and I actually took acting classes as a kid. Um, I was in, you know, a children's theater, and I really do believe that that was a small stepping stone for me to learn how I was supposed to act. Because I didn't know how to act. And so they would say, Well, this is how we act surprised. This is how we act when we're happy, when we're sad. And I really did learn those things through theater.
SPEAKER_03And then you started to mask.
SPEAKER_00Well, in data.
Expressive vs Receptive Language Gaps
SPEAKER_03That comes naturally. Because you had the skills, then our vulnerabilities don't show, and we learn how to mask. And that can look like being angry or um not paying attention or just being an airhead or whatever, but that doesn't mean that's where we really are. That's just how we're trying to cope with society. Um being able to see through that for a caregiver or a parent is is very important because that's a defensive thing for us. We need to keep ourselves safe. We get so much negativity all the rest of the time. We're not trying to be fake people. We're just trying to, you know, keep our heads down and not get hit with the shell blasts all the time.
SPEAKER_00Yeah. I mean, for me, it was always I was always stoic. I just always looked stoic. Whether I was extremely happy, I was one way, or if I was extremely sad, I was one way. When my dad died, I didn't show any emotion. I mean, was I deeply sad? Absolutely. I just didn't show it. And I don't know, I bet it was confusing to everybody why I never really changed my emotional face. Um, but I could act on stage. I was really good at that. Uh, but in real life I wasn't. So, you know, and I want educators to realize this, you know, struggling, like we're talking about academically, isn't lazy. It is often a mismatch between teaching and wiring. And I think, you know, they have teachers and educators, they have caught up with the times more than they used to. But what would you tell teachers trying to support FASD learners?
SPEAKER_03Um, learn how to identify and work with different learning styles. Some people might learn from reading, some people might learn from hearing and talking about it, but some people need to do hands-on. And anything that you can get kids where they're using their hands and their brains and their talking and grouping back and forth, that is a more effective teaching style for someone for a lot of us with FASD. But it's so individualistic. Like I said, some people will do great with just being told something and they will learn it and they'll have it. Um, yeah, understanding the different learning styles is vitally important, and you have to work into that memory issues. You might have to reteach a few times, but you know, there is a way to reach people that is not condescending or mean or anything like that. There are ways to do this effectively.
Memory: Short, Working, Long-Term
SPEAKER_00Yeah. Yeah, my one son, he is so hands-on. I mean, I homeschool him. So, you know, I we get to learn the way he learns. I mean, that's what we do. Uh, and another one attends a school for learning differences, and they do a really good job of helping him uh be where he is. I think that that is the most important thing. But both rely on speech to text. And my nine-year-old struggles to write. I mean, it takes him 10 minutes to even write his name, and he is smart, he just is not able to execute that. And forcing him to sit there and write a paper is only setting him up for failure. So, I mean, that's one of my main things when I want to talk to educators, is that, you know, not everybody in the classroom is learning the same. So don't make them all sit there and write a paper. If they can use the tools that are provided them, and now there's tools that we didn't have, but yeah, allow them. My son, he was so discouraged and down on himself. And whenever I would say, okay, now we're gonna write an informational paper, and he would be like, you know, and but I'd put the Google Doc up, I turn the microphone on, and he just talks. And everything that he knows, he can see right in front of him. And then we edit it and we rewrite, and he can see that process too. But at least he was able to put most of it on paper without having to write it with his hand and a pencil, because that was just set him up for defeat from the very start. And so I always want kids to be able to learn the way they learn and use the tools that they have. And why not let kids succeed with the supports? I mean, that's you know, I would have used them if I had them. I think I would have done a lot better in school.
SPEAKER_03Mm-hmm. I I agree absolutely. Um it's it's like the difference between equal and equity. Um is like like equal is everybody getting the same thing, but equity is people getting what they need. So um it doesn't take away from other students or anything to give that equity to students with um um special needs. Absolutely. So it it's it's a valid point and it needs to be part of education, absolutely.
SPEAKER_00You know, I and I believe in support, not punishment, and we have to learn how to really support and understand what we are really dealing with. How does support in the classroom or at home or in the world, whatever, how does support versus punishment affect people with FASD?
SPEAKER_03No homework, no homework, first law. The best thing you can do to support kids with FASD is not to give them homework, right? Um what that does is that takes all the stress at the school home. And parents and siblings are not equipped to deal with the school frustrations going on. Often subjects are stuff that parents don't haven't thought about in 30 years, kind of thing. And it's not stuff that they know either. So everyone gets stressed out. So let's first step to supporting is not having homework. Understanding um for parents, when kids get home, they're gonna unload. They are hacking all of that frustration, all of that anger, all of that, you know, you gotta sit still for eight hours kind of thing, or six hours, whatever it is. And that's gotta come out. And where does it come out where they feel safe?
SPEAKER_04Exactly.
SPEAKER_03It's not that they hate their parents, it's not that you're a bad guy, it's just that you're the safe person to explode with. Right. Understanding again, behavior is not behavior, it's a symptom. And that pressure release needs to be there because it's not built into schools often. If um there were regular movement breaks and things like that, we might be able to decrease that for our kids in school. But that's, you know, that's special education and something that I don't necessarily work in.
SPEAKER_00I also really advocate for them be my son does short instructional videos with very hands-on uh online activities, which, you know, some people might look at that as negative. But I'll tell you what, he learns and he knows his adjectives and his nouns and his abstract verbs and you know, or abstract nouns and all of that stuff. I mean, he knows it all. He can put his sentences in order and find um where grammar is wrong because of these programs. But if he would have sat and just stared at a screen, he wouldn't know any of it. So that's really important. And also lots of breaks. I believe in breaks, breaks, breaks, movement. These our kids need movement.
SPEAKER_03Yes, absolutely, absolutely. And uh again, um just understanding the blow-ups, the uh stuff that happens when they get home, and then yeah, taking the time to connect with them and talk to them. And they'll tell you, you know, I really don't like math. And, you know, that gives you a place where you can, you know, start to support them in that area. Well, let's take a look. I don't like math either. So let's let's see what we can find.
Neuroanatomy, Overload, And Sensory Needs
SPEAKER_00Yeah, and I'll probably talk about this at another point too a little bit, but you know, realizing when we have to take a shift too, because my son, um, we're shifting to life skills and job skills versus learning the same things over and over every single year because he's not able to really learn it and retain it and uh use it. So, you know, now we're come next year, seventh grade, we're going to life skills and job skills. And it's a hard thing as a parent to make those decisions. But also for them to sit there at a calculator for the next five years isn't going to do him any good. But do I want him to be able to take care of himself? And we need to start really focusing on money because we've taught him over and over this is a penny, this is a nickel, these are what this is worth, and he's still not getting it. But the more games that we play and things like that, I mean, I think that those things are a lot more important than can you do algebra?
SPEAKER_03Oh, absolutely, absolutely. I can't remember though the the last time I needed a Pythagoras theorem for anything. I mean, it just doesn't happen.
SPEAKER_00Yeah. Well, I want to talk about cognition and problem solving, reasoning, planning. I mean, these things are huge. And FASD is not about a low IQ or low intelligence, it's about access. In fact, minus the working memory, you know, I have an IQ of like 130, but when you put in my working memory, it's like 69. So, I mean, there is a huge deficit there. How did cognition challenges show up for you?
Key Takeaways And Part Two Teaser
SPEAKER_03Um, understanding abstracts was was very difficult for me. Um I love reading history and um actual I would read encyclopedias. I would even read a dictionary or a thesaurus. But it was very hard for me to get into reading an adventure novel or something like that. Um so for me, um a lot of the stuff that was in something that's say a novel would be abstract. I couldn't form the pictures in my mind. And it I I probably didn't actually start to read anything like that until I was probably 10 or 11 years old. Up until that point, it was all factual stuff because that was something that I could form a picture in my mind. And this is part of the way I think. If we say it, it becomes a photo that I see in my brain. Yeah, it's sort of like I started going around when I do presentations and asking people how many have an actual voice that they hear in their head, like when you're going to do something. Oh, you gotta lock the door. Oh, don't forget to you know brush your feet off before you come in the house and things and you know about 50% of people don't. They just understand to do these things. But I have this voice, which is my voice, by the way, that gives me instructions as I do things. Okay, I have to do this, I have to do this. Um, this often could be uh people who talk to themselves. That's their inner monologue coming out, and that's them you know, setting their priorities. Things that neurotypical people can do automatically, we have to do like a manual transmission. It is clutch here, clutch out, clutch in, clutch out, and it's tiring. And understanding the frustrations of people um with neurodiversities or FASD in particular, after a day of working and dealing with people, yeah, they're gonna not be on their best behavior.
SPEAKER_00Yeah. A lot of mine gets clouded when I have a lot of distractions and I'm, you know, not able to retain even more. So it does make it harder, and it can be kind of comical sometimes. I crack myself up. Um, and that's part of it, you know. I mean, I have to laugh because if I don't laugh, I would always be frustrated. But, you know, I know that the cake that I'm making is not gonna look like it did on the pit in the pictures. It's just not. And I have to be okay with that. And, you know, I look at other people's things that they make, no matter what it is, and I'm just like, yep. Well, it looked like that in my mind, but it does not look like this. And you know, you start inserting all these things, the worse the outcome come, you know, comes out, and it it is what it is.
SPEAKER_03Um that that could be attributed to ADHD, which is one of our larger comward babies. Yeah, I do have that too. About 85% of us have a ADHD, but um that expectation of perfection, and then when you don't do it, you're down on yourself. I could not accept a compliment for years and years because I'd be like, no, I that's terrible. I I should have fixed this, and I didn't understand that I was insulting the people who were giving me compliments because they're offering me something, and I'm saying no. So that's part of the social contract I didn't understand until I grew older that it's one of the social cues. If somebody compliments you, don't diss the compliment. I guess I'm negotiated.
SPEAKER_00Yeah, I do that too. I'm really because I'm missing something positive about me, and it's hard for me to accept that.
SPEAKER_03And my brain was wired exactly that same way to automatically look for the flaws. And that can be um attributed a lot of times to ADHD. It's compounded by being told you're bad and that you're wrong, and that blah blah blah. And before too long, you're down on yourself more than anybody else. And this is one of the things I really work with people with FASD to understand. It's not your fault. It's not your fault when your brain works in a certain way. If you don't work with that brain, you're going to have a problem. So learning to understand it is important to our longevity, how long we're actually even going to be here. It's so important to understand our own brain.
SPEAKER_00Well, I appreciate that because I need to be better at that. So I want to move on. Yeah. I want to move on to um expressive and receptive language. I think that this is one of the biggest problems that I see. It is with myself, it is with my kids. And expressive language and receptive are so different, they're completely in different parts of the brain. Uh, do you can you say the difference between the two?
SPEAKER_03Well, um, one is understanding the information that's coming in, and one is understanding the information that you're putting out. And sometimes the two are not equal. So um that can often be attributed to um developmental delays, depending on how neurologically you might be affected. And it it it often shows up for people in able to follow long conversations, but you see people starting to wander when the words get big and things like that. And you can recognize in people when you're starting to lose them, and that sort of thing. Um and what you see is uh the person might speak well speak well, but again, does not understand the words that they're saying. And the other thing that that we can see is um this one that that that we get all the time knows the instructions, knows the rules, but can't follow through. And that's often a challenge where you know someone's thinking we're being obstinate or difficult, but understanding that expressive and perceptive language can cause us, like I can know rule or step two, three, four, five, and six. But if I don't know step one, I'm paralyzed. I can't step un until I know what's ahead, sort of thing. So understanding um just goes back to this maturity, how they receive it, how they're able to process it, and what it shows like when they repeat it back, and you can start to get a gauge for exactly where they are on their receptive or cognitive scale. And um that uh understanding things like what you were talking about with your son, that's not cognition. He understands, but that is right now the expressive language, the ability to write or anything like that is not there, and not really for any number of reasons, yeah. But understanding that it doesn't make him less than because the thoughts are there, it's just how do we access it? And you found the perfect way. Speech to text is is a boom for so many of our people.
SPEAKER_00Yeah, yeah. And in our house, actually, I mean, it is we I think miscommunication or not understanding is probably one of the biggest things that happens every day. And uh, I mean, they do have great speech. And what is interesting is that I tell speech therapists this all the time when they say, well, he can talk fine. Uh, yes, he can talk fine, but can he have a reciprocal conversation? No. Can he really say what he's meaning? No. Uh, is it putting pieces, parts together every time we have a conversation? Absolutely. And those are all parts of speech that are unrecognized when people are trying to express themselves. It really is, I think expressive language, expressive language is one of the hardest things for people with FASD. And we can be misunderstood all the time. My mom always used to say to me, but that's not what you said. Well, that's what I meant. See? Yeah. You know, I was always that kid too, that I was in the room with, and my teachers would say, Well, why aren't you doing what you're supposed to be doing? Why aren't you taking notes? And I would just be like, I don't know. And I didn't have the ability to tell them that you sound just like the Charlie Brown teacher. And I have no idea what you're saying and what I'm supposed to do. And I know you just said it, but what I heard was blah, blah, blah. You know, just like that one that was on Autism Speaks, that one thing that I wrote about all I hear is blah, blah, blah. It's really true. So it's really difficult for us to take in the information, retain it, understand it, and then execute, or be able to express back to you what we are supposed to do. There's a lot of steps there.
SPEAKER_03Exactly, exactly. And it can be really, really um daunting in a school um um setting with the lighting, the number of people, the noise, the distractions, trying to pay attention. And if the teacher is looking away or you might lose that connection. Some people need to see the mo. Some people need to see the face of the person speaking, things like that. Each person is so so different.
SPEAKER_00I need cue cards. I need things in front of me all the time. When my okay, I'm writing a memoir. I am 40 plus thousand words into this book. It is all I'm about, you know, 20,000 words to being done. And I will probably finish it very soon. Um, and I'm very excited about it. It is so good. My cousin, I feel like it's good. My cousin asked me, and he's a writer, and I very much respect him. He said, Oh, that's awesome. What is it about? Um it's good. Yeah. That's about all I could get out. But I do know what it's about. I know everything about it. But I have to have keywords in front of me to be able to look at it and then go from there. I have to do that because I can't pull it from my brain, even if I know it really well.
SPEAKER_03Well, that's because it's so big and you've never tried to make it into something in a little cube. It's still you're something that you're working on. It's gigantic. It's hard to talk about these things to people. And like I'm like that in the middle of a project. Well, what are you doing? I'll talk to you later. Yeah. Sometimes you just don't have the word because there's too many of them and you need to pare them down. That takes time.
SPEAKER_00That that's true. And I script things all the time. I have a start and a finish when I have conversations a lot of times with, you know, in general conversations. There's there's a start and a finish, and there's a script. And if you throw me something that I wasn't expecting, I might not know how to answer. And I'm a very intelligent person. But it's just grabbing that information in your brain and being able to express it. Retrieving information. That is not easy.
SPEAKER_02No, no, no. And it's just too memory issues.
SPEAKER_00Mm-hmm. Which goes go ahead, because I was just going to talk about memory, because this is one of the domains. And this is a really tough one, because one of the hardest parts of living with FESD is memory, because it affects everything. People assume that if you heard something once, you should remember it, or if we hear it 10 times, we should remember it. If you learned it yesterday, you should be able to know it today. But that is not how our brains work, and it is not how my kids' brains work. I know this. Memory with FASD can feel like trying to hold water in your hands, and the information is there for a moment, but then it just slips right away. But you can you can't grab it and you can read an entire page and not be able to tell someone what it said. And you can be given instructions and genuinely want to follow them, genuinely want to follow them because we really aren't bad. But minutes later, they're gone, and then the world's labels laziness, defiance, not caring. When the truth is much deeper, it is not a character issue, it is a brain issue, and it is exhausting to live in a world where people expect your memory to function like theirs because you are constantly working twice as hard just to keep up, constantly trying to fill in the gaps that your brain never meant to hold.
SPEAKER_03I had often short-term working and long-term memory. So we divide it up into three different areas. Short-term memory. Do you remember what you did yesterday? Don't I don't remember what I did yesterday. I really don't. Um, even something as simple as I have a nice hot cup of coffee. 20 minutes later, I have a cold cup of coffee that I've been sitting right here beside it. I've been doing stuff, but I haven't been able to remember while I'm doing this that I have this here. I'm able to forget steps while I'm taking them. Uh as I'm doing things, it it's like that suddenly you're like, why am I here? Why did I come into this room? That's working memory. So that's like in the moment, often short-term things. I need to go get this, and then you forget why you went to go get it, things like that. So that's the challenge. They both show up quite often, and long-term memory sources um anything over that. So I often tell people that I'm not gonna remember what was said today for about two weeks, and then that gap in my short-term and working memory disappears, and my long-term memory is able to pick up on that. So I'm able to remember a couple of weeks later things that happen.
SPEAKER_00That happens to me.
SPEAKER_03Yeah, in the meantime, I and this white, I need people to understand quite often is I tell them, honestly, it's just not going to be there. This is a deficit that I have. So I understand short-term working moments are a challenge for me. Um what often happens with people, and especially with kids, is when they can't remember, the brain will insert something to fill in that blank. Okay, and how does it look like that? Oh, interesting. How does that look to parents? How does that look to uh law enforcement officials and just a lie? Looks like lying.
SPEAKER_02Yeah.
SPEAKER_03And not understanding or not knowing that because of that memory deficit, the brain is looking for what happened, why, what, but why, why, boom? It remembers something comfortable, something that was done at some point, and it will insert those words into that memory and to give us a working sort of memory. So not making it up, our brains are leading us astray by mixing memories together often.
SPEAKER_00Is we oh my gosh, it happens to me. It does. Yes, 100%. And I I have a hard time getting the entire story out. And my son all the time when he gets in trouble at school, and then he'll come home and he'll say something, and it doesn't really match. But eventually his story changes at times, and I'm just like, it's just so confusing to me. But I know that it's really hard for him to convey what he what really happened. And it and his story does change. And I was always accused of that. Here's the story, and then here's the story. Let's try to bridge it together, and let's try to like, you know, figure out really what happened. Um, and it's really it makes us vulnerable as because you know, we're not really able to express things that happened to us. So it sets us up for vulnerability.
SPEAKER_03It's the ultimate gaslight.
SPEAKER_00Mm-hmm.
SPEAKER_04Don't you remember? You said this. I did, yeah.
SPEAKER_03Oh, oh, okay. Well, if I said it, uh don't you remember that? Or it's the ultimate gaslight, and it can be very much to make us vulnerable.
SPEAKER_00Um and you and I were both raised in homes and with certain people that didn't show up. You know, they just didn't show up. And my mom was one, and she was a big gaslighter. And uh she would constantly put me in that situation and make me feel like what I was saying didn't happen. But I knew my eyes, I trusted my eyes, I knew what happened, and she would constantly twist it and turning on turn it on me. And so, you know, that's really interesting. But just to go back to basic steps of, you know, being able to say what, to have this memory, and she would know this about me, and other people would know this about us, um, and use it against us, is she would just say to me, like, go downstairs and go get a can of beans. And I would go down, I'd hit the bottom step and I would yell back, what was I supposed to get? I had no, I could never retain it from the kitchen to the bottom stairs, what I was supposed to get. And she knew that about me.
SPEAKER_03That working memory.
SPEAKER_04Yeah.
SPEAKER_03And yeah, it it's quite often used in a very negative way. And uh I've seen people try to use it with me in in social situations and things like that. So it does happen and it it makes it almost yet to be more guarded when it comes to something like memories. You do you have to be.
SPEAKER_00Yeah. Well, I want to talk about neuroanatomy and neurophysiology because the structural brain differences, seizures and scan findings, and you know, we realize that this really is physical. And where this affects me in a couple of ways, I want to explain it and ask you. Um, I have a couple things that happen to me whenever I'm in an overstimulated situation. Uh, one is my spatial sense completely goes, and I just I don't know. I'll go into certain stores, or I'll go into a situation where I can't hold on to something and it's really open, and all of a sudden I lose my complete spatial sense, and I have to hold on to something. Or this also happens to me like if and I have and I know exactly what I need to have a really good conversation in a meeting. I need space. I can't have somebody expecting me to sit directly across from them and me look at them, expect eye contact, people sitting next to me, a crowded room or even in a small space. And because my brain literally, and I've had this all of my life, if I'm in a situation like that, I'll I'll feel like it's in my brain. I'll feel like a short circuit. And but if I move away, if I look down, if I can talk to the person and be like this and not expect them to, you know, if I can have all those things in place, I'm fine. But if you start inserting all these inputs into my brain at one time, I literally short circuit. I can understand that.
SPEAKER_03It's uh a problem I I have with um basically what you're describing, because there are a lot of thoughts going through my mind, and because all of the thoughts are pictures, that's taking up a whole lot of brain space. All those megabytes and millibytes are constantly flashing, and eventually it just gets to be just the just a total test show. But yeah, uh neuroanatomy or neurophysiology is um basically understanding uh one of the things that often happens with FASD is a smaller head size, so that can affect brain development, and also when we understand um how FASD um in the early parts, okay, so cells start out flat. They're they're they're not round like we know them. And if alcohol is introduced to those flattened out cells and covering them, when the cells close, that alcohol is in the middle of the cell, it's not just on the other side. So we have to understand that early, early onset of alcohol can be very damaging to the neurons that the brain uses as a structure or scaffolding. Um, basically the two by fours that you use to hold up the walls, those are neurons, and those are profoundly affected at this time. So, what ends up happening is our brains develop differently, they're shaped differently, parts aren't necessarily formed the same way that they would have been without the introduction of alcohol. So that's where we have to understand neurophysiology. Um I don't want to be too dramatic, but some parts of the brain might not be whole. So understanding that is very important. It's a brain domain, the physicality of the brain, and that affects wildly how how it works.
SPEAKER_00Yeah, yeah. Well, my early neurologist, when I was in kindergarten, said that I didn't have um, well, the retention and the comprehension and the ability to understand, but I also the part of my brain uh where it was also damaged pretty significantly was in my eyes, where I don't have the ability, I don't have depth perception, and it's not in my eyes, is the problem, but I don't um converge. My eyes don't converge, and I see two different things. Fortunately, my brain is very kind and it shut off my left eye. And the only time I ever feel it is when somebody, like in church or wherever, you know, they sit in front of me and they sit in front of my left eye, and then my or my right eye, they'll sit in front of my right eye, and my left eye will have to kick in and work. And I'm like, oh, wait a second. And I can actually feel it in my brain that that it shifted from my left eye to my right eye.
SPEAKER_03You want to know what's really weird about what you're talking about? Um the circuits that um affect our are involved with our eyes at the very back of our head. Hmm. That is so weird.
SPEAKER_00It's kind of cool. RJ, I feel like we've just opened something really important here. We've talked about AF, we've talked about FASD as a brain-based disability, how behavior is communication, and why shame never works but support does. And honestly, I think a lot of people listening right now are probably having a light bulb moment about themselves, their kids, or someone that they love. But we are just getting started because in part two, we're going to dive deeper into what this actually looks like in real life. We're going to talk about how to support someone with FASD without burning yourself out, how expectations need to shift without losing hope, and what practical strategies actually work when traditional approaches fail. We're also going to get real about identity, healing, and how understanding the brain can change the way we see behaviors that used to feel confusing or overwhelming. So if you've ever wondered how to move from frustration to understanding or from survival mode into something more sustainable, you're going to want to stay with us. This is Real Talk with Tina and Anne, and we'll see you in part two.
