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 the Diagnosis: Understanding the FASD Brain (Part 2)
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We dig into the real-life supports that help neurodivergent brains thrive, from the hard science of FASD to daily tools for executive function, transitions, sensory needs, and affect regulation. RJ Formanek and Ann Kagarise share candid stories, and swap strategies that trade shame for structure and self-forgiveness.
• neuroanatomy changes shaping behavior and perception
• amygdala overdrive, safety cues and early supports
• executive function limits and practical scaffolds
• time blindness, chunking and accountability buddies
• transitions as processing needs, not defiance
• cause and effect gaps and replacing why with how
• adaptive skills, dismaturity and external brains
• affect regulation, anxiety and non-med supports
• sensory profiles, sleep, texture and travel hacks
• motor planning, handwriting and kind repetition
• self-advocacy at work and reasonable accommodations
• self-forgiveness as the base for growth
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Welcome Back And Focus Reset
Neuroanatomy, Scans, And Real Brain Changes
SPEAKER_00Welcome to Real Talk with Tina and Anne. I am Anne. If you just joined us, this is part two of our conversation with RJ Forman Act. And honestly, if you haven't listened to part one yet, we really encourage you to go back because we laid the foundation for understanding FASD as a brain-based disability and why behavior is never just behavior. In part one, we talked about the 10 brain domains affected by FASD, the realities families face behind closed doors, and the powerful shift that happens when we move from judgment to understanding. Today we go deeper. We're going to talk about what support actually looks like in real life, how to respond when traditional approaches don't work, how to reframe expectations without losing hope, and why compassion and structure together can completely change outcomes because living with neurodivergence isn't theory, it's daily life. So let's jump in. Here is part two. 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'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. This also happens to me like 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. But if I move away, if I look down, if I can talk to the person and be like this, 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_01It'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 because all of the thoughts are pictures, that's taken up a whole lot of brain space. All those megabytes and millibytes are constantly flashing, and eventually it just gets to be just a total test show. But yeah, uh neuroanatomy or neurophysiology is um basically understanding 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 how FASD in the early parts, okay, so cells start out flat. 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. 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. 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 the brain domain, the physicality of the brain. And that affects wildly how it works.
Vision, Depth Perception, And Sensory Circuits
SPEAKER_00Yeah, yeah. Well, my early neurologist, when I was in kindergarten, said that I didn't have well, the retention and the comprehension and the ability to understand, but I also the part of my brain 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.
Amygdala, Hypervigilance, And Early Supports
SPEAKER_01Well, Noah's really weird about what you're talking about. Um circuits that um are involved with our eyes at the very back of our head. But that is so weird, it's kind of cool. You would think that um brain, eyes right directly there. No, no, it's all the way at the back of our head. That's why people see scars when they get hit in the back of the head, because that's what the business center for your brain actually is. Understanding that part of the brain that that can be affected. Um, often we see the amygdala is is highly overrepresented. Now, the amygdala is responsible for emotional regulation, fight or flight. Um I got that too. Why are we always up and ready to go? Well, that's a part of our brain that is highly developed in a lot of cases. Now, there is a lot of um conjecture and discussion about whether that's nature or nurture. It could be both. Because it could be experien experiential that causes us to develop this hyper-vigilance and that causes us to grow, which is why you can often see us freaking out over the smallest things. That's our amygdala, um, throwing a little bit of a temper tantrum. And there are ways to make people, again, feel safe, feel connected, and not feel that they have to go to those extremes. But like anything else, if this secondary symptom goes on for too long, it becomes tertiary. And tertiary is almost effectively permanent. It's something that they'll always have to deal with. Whereas if we can effectively deal with it earlier, it doesn't have to become a permanent brain condition. Our brains, neuroplasticity is a thing. We can affect the outcome. We get to our kids soon enough with the appropriate supports and understanding they're going to be miles ahead of where you and I were at that same age. So you're doing really good work, what you're doing.
Executive Function Explained In Real Life
SPEAKER_00Yeah, I they do go to a fetal alcohol clinic now. And, you know, that those things didn't exist with us. And it's new, uh even for them. I mean, it's just new. And the United States, we've talked about this, it's behind. So I'm really glad that they're starting to uh have those kind of tools and information out there for everybody so that they can get to these kids before they're 12. You know, my one son is 12, and he has all of these cognitive issues. And so, yeah, you know, the younger the better for sure. Definitely, definitely. Okay, now one of the biggest also problems in our house as a whole, because there's four of us here, um, is executive functioning. And we have touched on that a little bit, but honestly, mine can feel almost non-existent. And this is such a huge umbrella domain. So I want to talk about different parts of it because we're talking about impulsivity, time blindness, difficulty with transitions, struggles with cause and effect. And this is all part of the brain that helps planning, organizing, regulating emotions, which you just kind of talked about, and being able to shift gears and follow through. So when executive functioning is impaired, it's not just about being disorganized, it's about how the brain manages life. So let's talk about what this actually looks like and why it is so often misunderstood.
SPEAKER_01Well, I think you can look at executive functioning as how you use your brain. And um, that's often how we're recognized. And that's why we say it's largely a brain-based disability. Because those are how people recognize that there may be something to look into. When you're looking at executive function, everything that you were talking about, absolutely, um, you'll often see planning and sequencing problems, not a realistic uh view of the time it will take to get something done. I'm constantly doing that. I'll be there in five minutes. Well, in 15 minutes, and I'm still not there. I'm on my way. That's not me being dishonest. That's my brain fooling me into thinking I could drive there that fast and not allowing for the school buses and the trains and everything else that you run into in traffic. Problem solving and organization. I'm terrible at organizing. I know people on the spectrum love to keep everything very organized. They're very neat, very, very analytical, everything in its place. That's not me. Absolutely not. My brain does not go there. It's not, it's uncomfortable for me to be in a sterile environment like that. One of the other things that I again I often dealt with was impulse control.
SPEAKER_00I was just gonna talk about that. Yeah.
Impulsivity, Anchors, And Self-Pausing
SPEAKER_01I'm gonna do it. And um I I often say there was never a dare that I wouldn't take. And that was my Achilles heel because people knew if they dared me to do something, I would do it. I don't know, it was childish or uh disinterity. I was always getting into the worst trouble because my friend just go, I dare you. I got to. So I didn't understand how to fight those impulses. Um, since then I've learned if I feel an impulse like that, talk to someone around me. Say, I'm gonna go out and uh dance naked on the back deck. Is that a good idea? No, that's not a good idea. Are you sure? Yep. Okay, I'm not gonna do it. I'm not gonna say I'm I'm going on the back deck because I get arrested. But you know, just some sort of wild idea that I come up with. I live with my son. My son is is is my anchor. He's able to. And it's sometimes it's more serious things. I'll get angry at someone, or someone will do something else. I'm gonna go over there. Maybe you don't want to do that. I'm gonna call him. No, no, no. Maybe it's take a while. So having that person to sort of give you pause to think about that impulse is very important. Yeah, executive function is also hyperactivity. My hands are all over the place, everything is moving, I'm the person whose knees bouncing up and down when I'm sitting there, and things like that. Yeah, um, and that energy needs to be burned off. I can't contain it. So I have to find a way to without disrupting the whole room, whether it's a fidget or something in my pocket that I'm playing with in my jacket.
SPEAKER_00Always, always.
SPEAKER_01I'm always doing my things with my hands and my fingers. And and that is an executive function deficit there that I need to do that to keep in the moment. Because my brain will just take me to another world in no time at all, unless I, you know, actively want to stay in the moment.
SPEAKER_00In my house, I can't tell you how many times they'll say my name before I say, huh? Because I really am in my own little world. Um, but I wanted to I laughed when you talked about going out on the deck and you know, dancing naked or whatever, because you know, I was at band camp, I can remember in high school, and there was more than just me. So I wasn't the only one. But they said, you know, go streaking. And so I did. And we just ran through the Boy Scout camp streaking. You know, I mean, I did so many crazy things, and they were all on an impulse. It was just, okay, let's go, let's do it. And I was game.
SPEAKER_01Stuff you would stuff you would not do in your normal life, but it was an impulse, it was a momentary thing, it sounded like fun.
Time Blindness And Planning Workarounds
SPEAKER_00Yeah. Well, I mean, executive functioning is basically like the brain's air traffic control system. It's just broken down. And and it's having a difficult time figuring out how to navigate. So I wanted to ask you about time blindness, which you did mention about that. And I think that a lot of us have that, you know, it doesn't register the same way. Uh, 10 minutes, and I'll tell you why, too, is because 10 minutes and an hour feel the same to me. I don't feel the difference a lot of times. Because and I don't know if it's I just live in the moment or I'm lost in the moment, but am living, and then before I know it, I look up and it's an hour later, and I didn't even know it.
SPEAKER_01Yeah, anyone who knows me knows time is an abstract, and I have a difficult time with it. It's it's something that we as humanity assign to a natural process. I can tell you where we are in the day. I can find north, south, east, or west in a city, even, just by seeing the way the light falls. I understand all of these things about how time works, but I don't understand how man segments it out and then uses that as a measure. My brain doesn't honestly understand. I know the world works on it, but um, you know as well as anyone that you need to remind me a couple of days beforehand, before one of these things, or I'm going to totally forget it. It's not that I don't want to do it, it's not that I'm trying to forget it, but it's just again the way that my brain works.
SPEAKER_00So yeah, I mean, I know you. So, and and also I have like a plan in my head weekly. I have people on weekly. So I know on Sunday I do this, on Monday I do this, you know, I remind the person, I send the link, I do all the things. So it's already there for me. But um, I I know with you and we message each other. And so I your brain is my brain. I get it.
SPEAKER_01We we've we've often said that I think we do share half a brain between us.
Transitions And Processing Time
SPEAKER_00We I think so. I think so. Okay, so I want to talk about transitions because that's also a really big part of this. And transitions are hard because shifting from one thing to another zaps our brain and take shifts us right completely in a different direction that maybe we weren't expecting. And it takes time stopping one activity, starting another activity, changing environments, switching from play to homework or preferred to non or non-preferred, you know, what looks like stubbornness is really a neurological overwhelmingness. So, RJ, what do transitions feel like for you?
SPEAKER_01Well, I can describe what they would look like to someone like you. Uh, say, I I'm doing something, you say, Well, let's go uh for ice cream. That sounds like a great idea. What's my first reaction gonna be? No, no, wait a minute. I like ice cream. Yes, hang on a second, I'll be right there. But I need that moment that's my brain protects me from because I can be easily overwhelmed with transitions, and when things I'm not expecting to happen are suddenly happening or I'm being drawn away, that will come up. I usually start swearing when that first happens. It's like I'll be right from with you. Yeah. Um, I mean, I try to be nice when when a transition is forced upon me. Um, when you're dealing with with kids, it's often to have good to have cues, um, you know, reminders, you know, another 10 minutes.
SPEAKER_00Um five, ten more.
SPEAKER_01Yeah, we do it. Make me want to start wrapping up because uh it's just about time. And that way they're not they're still gonna be annoyed, but they're not going to be that shocked annoyed.
SPEAKER_00Yeah, whenever myself or I can think of one of my kids specifically is asked to stop um and move to a different whatever it is. Uh there is a slamming down of the hand, there is a stomping of feet, there is, you know, but then eventually I'm fine and I'm in, you know, but it it's just that transition to changing, and then I'm fine. And you're right, it could be a preferred. I like ice cream, but right now I was doing this, and it takes me a few moments to get there.
SPEAKER_01Exactly, exactly. So it looks like initially obstinence or something could actually be just asking for processing time.
SPEAKER_00Yeah. We're pretty good at giving my our kids um processing time. Not myself. I I'm not as nice about it for myself. But um, you know, writing a book and working on the podcast and doing all the things that I'm doing as you understand. We have our priorities. We have these things that we are committed to that we have to do. And the second somebody says comes in the room, maybe with a distraction, it's like, I, you know. So that that is the first reaction. I think that that could be normal, though. Not everything that we do is because we have fetal alcohol. I mean, it really could just be some of these things could be normal, you know?
SPEAKER_01Absolutely, absolutely. But again, it's it's often how we're identified.
SPEAKER_02Right.
Cause And Effect, Memory, And Shame
SPEAKER_01So because it's someone with a disability, it's automatically often attributed to that one. It could be just regular brain fatigue that anyone would have, or that that sudden shock of being concentrating on something and someone bugging you. I mean, that's a human reaction. That's not necessarily what it's going to be or anything like that.
SPEAKER_00Yeah. One thing I touched on with my son, or we we talked about a little bit, and also I'll just mention it under executive functioning is a cause and effect. And, you know, you can learn the lesson, you can talk about it every day, but you're still gonna get the same behavior without the realization that you're gonna get the same result. And, you know, it's like that walking down the same street and you're gonna fall down the same hole. Oh, I didn't know that that would happen. You know, well, why didn't you know that that would you knew that this was the same street, you knew that this was the same hole, but you still continue to go down it. I don't understand sometimes, and I do have a hard time trying to parent somebody who was just like me, who made the same choices and got the same results, but never learned from it.
SPEAKER_01Understanding consequences. Um, okay, often we're talking about the past. So we got memory deficits. We have uh a difficulty with abstracts, which could be the idea that you're trying to convey on on top of uh possibly poor memory, an abstract equals results. So it might be a little much executive functioning wise for um that understanding. That's a cogn cognitive thing that I think comes later with many of us, but um just you know just understanding like basic consequences. If if I go out without a jacket, I'm gonna get cold. Rather than being out somewhere and going, oh, I'm cold. Uh hello. Hello, you knew that when you went out this morning, you could have grabbed the jacket. That's not understanding a consequence. So it shows up in so many ways that are are depressing for us. It really is. Yeah. These things affect us first, like they affect the people outside of us, but we're dealing with it from the inside. And it's like when you reach your hand out and want to want to touch something, only it's over here, but your hand's over here. It's that frustration.
SPEAKER_00Yeah, you know, and and asking why is not really the best way to go about it because I could ask my son all day li long, why did you do this? Why did you do this? You know, you knew. That this could happen, but why so why did you do this? Why questions and trying to apply them to why we do something is uh you're you're not gonna get an answer because I really don't think we know.
SPEAKER_01Um yeah, why is often difficult for us to even understand because really abstract. Because my brain told me so because I had an impulse because um, you know, there could be any of a myriad of reasons, but yeah, trying to find justification, sometimes you just have to leave it and just say, Well, we'll try harder next time.
Chunking Tasks And Managing Stress
SPEAKER_00And I think oftentimes that just brings about shame. I you know far, yeah, yeah. I I think it can. Yeah.
SPEAKER_01Yeah, absolutely. I if if you try to push that. Um, but if the understanding is there that, you know, sometimes things don't always work the way they're supposed to. Yeah, don't worry about it. We'll we'll get it next time.
SPEAKER_00When executive functioning isn't working well, even in basic tasks become a multi-step cognitive marathon. I mean, it just does. And tasks can feel impossible and it makes a person want to quit. I know firsthand, if I understand what to do, why can't I do it?
SPEAKER_01Oh, I think we're talking a lot of ADHD stuff here. But um, for me, like when I have a presentation coming up, I have to break it down into manageable chunks. I can't do the graphics one and do the writing and do the setup to get there and uh the travel plans and everything. I have to break this all up into just different individual tasks. Yeah. So if I try push myself beyond that, then it's gonna be crap. I have like this is understanding, I have to know my own limits and not try push myself beyond that because the product in the end is not going to be my best work, and I want to do my best work, so that's exactly like the people who are in my personal life understand this that um, you know, I'm gonna be working on it, working on it, working on it, and then there's gonna be a period where suddenly nobody can talk to me because I am into that, but I've done all the pre-packaging of at ahead of time, so at that point I'm putting it all together. But if it wasn't me doing that along the way, I couldn't put it all together. Because I had the executive function problems with um sequencing and things like that. So breaking it down in small bite-sized manageable chunks is the only way that works for me. Otherwise, my heart rate goes up, I get stressed. When I get stressed, I can very easily I get mean. I get mean when I get too stressed.
Adaptive Skills, Dismaturity, And Safety
SPEAKER_00Yeah, I do, I can. And I often I I am a very visual person, and I look at executive functioning like, you know, here's the intention and here's the doing, and the bridge is broken. So it's really difficult to do it. It's just the bridge is broken. So we have to try to figure out how to get across. Okay, let's move to adaptive behavior and social skills because adaptive functioning isn't about intelligence, it's about developmental pacing. And autism and FASD are so enmeshed. We've talked about comorbidities and we talk about all the time that often overlaps with FASD with autism, but specifically, I want to talk about social immaturity, which is what we were talking about with the dismaturity. But I have always, and you know, why I want to talk about that right here is because I have when I'm doing every single thing that I'm doing, I have a Disney brain. And that's how I always explain it. And when I'm trying to do a lot of these things, I have a Disney brain. And that's part of the social development differences. And people assume, like we were talking about with the dismaturity at the beginning, but people assume that what they're dealing with across from them is a mature adult, and our neurodivergent brain is not, and development can be uneven, and we can be an adult age, like we said earlier, but socially and emotionally younger. So it really does make us very vulnerable, which I also explained a little bit ago earlier. But you know, where can we get the supports when these types of things are happening with the dysmaturity, with the vulnerability? And why I mention it here is because I take my external brain everywhere I go and I make it a thing that I know that when I'm entering into a situation, when I'm entering into go speak somewhere, when I'm whatever it is that I'm taking in the information different than I it's really happening. I feel a lot younger as soon as I enter. That dismaturity enters into me. I instantly feel younger, like I can't really handle this. I instantly don't feel like the adult in the room anymore. And I look to my external brain to help me navigate the room, to help me navigate what I'm supposed to be doing because I don't understand. Do you use any of those types of supports with your going out there and speaking? With your what helps do you use?
Travel Routines, External Brains, And Boundaries
SPEAKER_01Myself personally, um I've been at this for long enough that um I pretty well have become almost a self-contained unit as far as as so it's become natural for you, you know the steps, and it's been internalized. Often when I'm at a location, okay, I spend a lot of time alone because I need that time to focus and that sort of thing. So I do a lot of walking. Um the first thing the first thing that I do to get comfortable when I go to uh give a speech or something is I find out where all the exits are and I go through them. Oh, interesting. So I know the layout because for me, when the stress gets too much, I want to run. That's that's a very natural thing for me. So my adaptive behavior is often to avoid fighting if possible, and that means leaving. If I need to be in a position to fight, I will. But my first inkling is to avoid it because you have pretty things I want to take care of. And anyway, um, as far as that goes, I'm at a point where I used to stress it out. I used to have to uh like I call up friends at the airport. I hate this, I hate this, I'm the stress and everything. Okay. But I've gotten a point where I've been through it enough times, and I've been through flights that have had to land unexpectedly and things like that. And now it's it's become a lot more normal for me in that way. But I can see where um like newer people who are coming into it are dealing with these things, and that's perhaps like you're talking about, a trusted person. Um for me, it could be my son, it could be my partner, it uh could be someone I know who's at that particular conference who knows me well enough to trust. Yeah.
SPEAKER_00Yeah, you know, I always look at people like you or Temple Grandin or people that are always traveling and getting up there on stage and doing their thing, and I'm just thinking about how vulnerable I feel, how um lost I sometimes feel when I go into situations like that. You put me up on the stage and I know exactly what to do and say, I know exactly. But off the stage is where I get lost before and after the anxiety that does lead up to it, because where am I sitting? I have to sit in the back. I have to figure out that you know who is sitting at my table, do and those kind of things. And so I can't, because of all the things that we have mentioned so far today, because of all those things, I can't go into situations without having um somebody to look to. And maybe it's because, like I said, with the vulnerability, and I want to know that I feel safe. Safe is a big thing.
SPEAKER_01It absolutely is. And you know, um, it starts out even early as as kids. How do we often see um adaptive uh behavioral skills and social skills? Personal bound personal boundaries to people who share too much or talk about the subjects that people wouldn't normally talk about. That is an adaptive behavioral skill. It's one that's not working properly because uh most of us understand that we don't share our most personal, intimate details, but I've always had a problem with that. I've always shared things because to me it might be funny, but it might be very off-color to other people. So uh the things like that. Um uh not understanding the the social cues, and um, that can make it very frustrating, like especially doing something that I'm doing when you're dealing with so many people from airline people to taxi drivers to hotel clerks to uh just people on the street, getting the social cues so you're not you know making a fool of yourself kind of thing. Getting along socially without someone there can be very challenging. I like to have a friend around when I'm at those things, so I can, you know, just say, you know, is this a little weird? Yeah, it's a little weird. Okay, well, let's go grab a coffee then. And you know, that sort of thing.
Affect Regulation And Anxiety
SPEAKER_00Yeah, I, you know, because the world, people in the service industries uh aren't they should be trained more, or maybe they are, but you know, I always think about the person in front of me could have an invisible difference, and we don't know about them. And that's really important. But I've gone through airports where it's like, you know, I'm going through and them and the detector went off, and they're like, hands up, and everything is like moving so fast, and we're just like, well, you're not listening to us. And I'm like, but I'm not intentionally trying to not listen to you. And so I want them to be more able to help people with invisible differences and just not assume that we're being defiant, uh, which we did talk about a little bit ago. But it does make it harder to travel and to do all of those things. There's another piece to this too, and it's one of the other domains that I want to the affect, if that's how you say affect regulation. And this is when, you know, we're talking about things like anxiety and depression and emotional overwhelmness, which you did say that we do get overwhelmed a lot easier, mood swings and severe imbalance. I really believe that we do have an imbalance in us, natural a natural imbalance. And I want people to understand that this is not someone being dramatic, you know, this is not someone being too sensitive. This is not somebody freaking out in the middle of being told, get your hands up in the in the airport, you know, when you set off a metal detector. Um, this is just how our brains work. You know, we can just go to panic and rage and shutting down, which is where I often go. And people label it as an attitude or behavior when really it is neurological flooding.
SPEAKER_01Uh yeah, when when anything gets to be too much, there's got to be a circuit breaker or you're gonna burn out the whole the whole kit and caboodle. So that's the circuit breaker. Uh affect regulation is also um being able to express emotion genuine. Like I said, with my face, I'm known as having flat affect. Because me too. Unless I remember, yeah, unless I remember to smile and do all these things, I don't see the need for it. But that's again part of what they look at is because babies start smiling from whatever age or whatever. I guess I was a grumpy baby. I don't know. Were you?
SPEAKER_02Did they say that about you?
SPEAKER_01No, no, no. Aside from the fact that we had to have an operation two weeks after I was born. Me too. Why did you? I had a lock intestine that they had to end up cutting a chunk out of. So I have a short lower intestine.
SPEAKER_00Wow. Okay. Yeah, I had to have surgery too when I was an infant as well. That's interesting. For different reasons. But that's just interesting that we both had to have surgery as as babies because I I think that that affects us too.
SPEAKER_01Oh, yeah. Um, there there are other physicalities that come with FASD, and I've met a number of people who've had that very early um interventional surgeries of different sorts. I I know a young one who had the same one as I did, as a matter of fact. So it's it's not unheard of. And um, if we get back to the affect regulation, and we're talking about um anxiety and mood imbalances. This is where I was talking earlier about these are secondary conditions to the FASD, but if they carry on, they can become permanent, and if they become permanent, they can become mental health concerns.
SPEAKER_02Yeah.
SPEAKER_01So again, earlier is a really good thing. And some of us are going to deal with our anxieties for the rest of our lives. But the thing is that we many of us can learn to deal with that rather than be victims.
SPEAKER_00Do you know other ways besides just medication to help in these areas?
Accommodations, Self-Advocacy, And Work
SPEAKER_01Um well, uh, culture is one that's very important. I think uh whether that takes the form of say religion or um some kind of a group that you can uh feel a larger part of. For me, it's very important. Uh sunlight, getting outside, getting the more I can use my limbs, these are my my my brain seems to work, kind of thing. And and we go back to what we're talking about, taking breaks. I will take take a break and take a walk outside while I'm in the middle of of working. I just need to do that. And you know, a lot of workplaces don't give you that flexibility. Sometimes just like a three or five minute walk to the coffee machine and back can give you that chance to reset.
SPEAKER_00Well, that's why I believe in accommodations that are reasonable, and that's why I believe in self-advocacy. I mean, just saying what you need, you know, and I need to let you know that I just need five-minute breaks every now and then. Say it to your boss. And and they just, you know, as long as they're reasonable, there shouldn't be a problem with that. And, you know, I've often wondered, should I tell them, which I probably will never have a regular nine to five job again, but if I did, should I tell them that I have disabilities? Should I tell them, you know, or should I do a rock star job and then introduce it? You know, I've wondered that.
SPEAKER_01I wondered that myself what I would do in the situation. It's largely a personal decision. Yeah. Um, I always like to go into new jobs. Uh, when I worked in television, I had a lot of self-confidence in my work. And I would go in and just be a quiet guy for three months. And then after three months, I'd be just like, ah, I'm the best, and blah blah blah. And by that point, they can't fire you. So uh yeah, I would probably wait, and then about a year or so into it, once I was successful, or you know, whatever you want to call it, achieving uh a full-time job and not getting fired, uh because it showed.
SPEAKER_00Um that's it, that it showed.
SPEAKER_01I was very much a perfectionist as a new shooter, and I would, you know, reposition reporters until they had it just right. They'd be saying something and saying, no, no, no, you worded that wrong. Uh maybe you should say it this way. And I got in trouble with reporters a number of times because they don't like to be told what to do. But it was my it was my name going on that report too, and I wanted it to be the best it was.
SPEAKER_00So right. Well, it showed up with me a couple of times, and it really did affect my one of my jobs because um, and this was before I was able to speak, you know, in front of people. Now I'm more comfortable, but back then I was an amazing director of the battered woman shelter. I was so good at that job. Um, but my boss told me that I had to go speak, and I just went, No.
SPEAKER_02That doesn't go well. Well, no, you have to.
SPEAKER_00No, I don't. I can't. I'm not able.
SPEAKER_01And you know they say that public speaking is one of you know society's biggest fears. So that is under yeah.
Sensory Processing, Sleep, And Food Textures
SPEAKER_00But you know, it it came out in different ways. Um, but anyway, now I'm different and I'm out there, you know, I am out. Um, I everybody knows that I have what I have. So it it is a benefit in my, you know, that people do understand this. And I work at a school for kids with autism and I had the accommodations there. I think it's really important. It was important for me to finally let people know, and it made it easier. So, okay, we're gonna wrap soon, but I want to talk about um just a couple more things. And sensory processing was is it's a really big deal. You know, I was the one that wanted my tags cut out as a kid, the bright lights, the crowds, clothing textures, noise, over stimulation, the fight or flight, what you talked about earlier. But, you know, we did kind of touch on this, but it really affects who we are. When we're out there in the world, if we don't have those things in place, we can't be even in our own skin.
SPEAKER_01Oh, exactly, exactly. And um, understanding how big an issue sensory uh perception is for us. If you want to make me totally angry, use a whistle right behind me, a very loud, high voice. Yeah. Well, it actually, I think, starts a panic thing in in me. I don't know what it is, but my blood pressure goes up, and of course, like I said before, I go into fight or flight automatically, and at that point I'll fight for sure. Um things like uh lighting, the temperature, eggs on clothes, the and like you're saying, this isn't something that you can just ignore. Like if the sun or the the lighting in the room is too bright, it's gonna be too bright, whether it's 10 o'clock in the morning or four o'clock in the afternoon. That is gonna be a constant. The noises that are going on around, um all of these sort of things, they build up little bit by little bit by little bit. It's like yeah, a few more drops of water, a few more drops of water. Eventually is going to be full just from the sensory. This is before we even talk about executive function or adaptive function or anything. This is just about living in your own skin, as you were saying, and that can um often we'll see it in kids that won't have a shower.
SPEAKER_02Mm-hmm. I have more things.
SPEAKER_01Um often, often you'll find that they love it in the shower or the bath, but it's the transition getting to the shower that can be a challenge for them. Yeah, it is. I love getting in the shower, but um, where I'm living right now is a little cold in the winter, and that uh that trip to get into the shower can be a little chilly. Yeah, so I don't need that part. So I can understand why one part might stop me from going on further. That's a sensory thing. For me, I sleep with about four blankets. Me too. I I don't have uh uh uh a weighted blanket specifically, but I have heavy old quilts, and some nights I'll need four of them, and some nights I'll only need one, and but I'm able to gauge that as I'm sleeping, as I get into bed, I'll see what's comfortable. That's a sensory need. If I don't take care of that, I don't sleep well. If I don't sleep well, Hundreds of day the next day.
SPEAKER_00See, all those are the kind of things that need attended to before we even deal with what you said, with the executive functioning and things like that. Those things have to be handled first.
SPEAKER_01Yeah, when you're dealing with things like screen time. Uh, for some people, they they can handle, you know, having a TV on until they fall asleep in front. Some people need to be away from it for about an hour before they can fall asleep. It all depends on the person and um how you sleep, the quality of your sleep is is vitally important. So all of these sensory things, and we get down to food, the picky food eaters. Um sometimes not the taste of the food, it's the texture.
SPEAKER_02It's the texture.
SPEAKER_01Yeah. And well, why don't you like that? Well, it feels like mushy goo to me. Uh, there are some some things I can put in my mouth, but I can't swallow because as soon as I go to swallow, I get on that to come on. So I never have to worry about eating oysters because well Oh, it's not going in my mouth.
SPEAKER_00Oh, no.
SPEAKER_01I've tried, and and just as soon as it hits the back of my throat, it's like, nope, revulsion.
SPEAKER_00No, I can already see the texture in that. I don't want it, I don't even touch them. There's a lot of things I don't even touch, so it's not yeah, I'm a big texture person when it comes to eating.
SPEAKER_01Each one of these issues is adding more water to that jug full of water.
SPEAKER_00Yeah, and I need the weighted blankets. I have a weighted blanket, but if I'm not using that, I just I pile on the blankets. It has to be just it has to feel just right, but I need that in order to go to sleep.
SPEAKER_01One of the things that I do on the road is I quite often will wear a heavy coat. I have a nice long wool coat or I have a heavy winter jacket. And what I do, because hotels have these fluffy little thin, there's no weight, I end up sleeping under my coat. Otherwise, I have a really difficult sleeping, A, in a new place and B on a bed that's not mine. C uh with my sensory needs, it can be challenging. So even something as simple as having my coat, which you know smells like me and it's heavy and comfortable, and it sits around like over top of me like a nice warm hug, I can get a little bit of sleep. It is go between sensory negative and sensory positive and find that balance.
SPEAKER_00Yes, it really is. And some people, you know, um, with sensory and things like that, you need a lot of overstimulation, and some people don't need a lot. So everybody is different there, too. They're either sensory seeking or they're not, and yeah, it really depends.
SPEAKER_01Sensory in integration is a big thing because what works for one might not work for the other, it might have the exact opposite effect. Great. What I might find soothing, you might find like fingers down a chalkboard.
SPEAKER_00Exactly. Yep. Some of my kids really like loud music, and then the other ones can't stand anything loud.
Loud Vs. Quiet: Finding Focus
SPEAKER_01See, I kind of work in between that. I love a lot of a lot of loud music while I'm thinking, but when I'm actually doing, then I want silence. That's interesting. Some chunks are noisy and loud, and other chunks are silent because I need that where I can hear my brain giving out, barking out these instructions and what I'm doing down.
SPEAKER_00When I work on some serious things, sometimes my friend will say, How in the world can you have three things going at one time? And, you know, think. And I'm like, I think better like this. You know, sometimes I do.
SPEAKER_01It depends on where you are in that packaging process and and and how it works. Like I said, up until the point where I get to the very end where I'm putting it all together, yeah, it's loud. It's it's you know, um, YouTube and the same way.
SPEAKER_00I'm the exact same way. The process is loud. I like things loud. And then when I really have to think, I can quiet everything down.
unknownYep.
SPEAKER_01You take all that loud stuff and you put it together nice and quiet, and boom, you've got something.
SPEAKER_00Oh my gosh. Now, see, we're exactly alike when it comes to that. That's interesting.
SPEAKER_01Absolutely. Well, I just want to end with Yeah, motor skills obviously are, you know, your balance, uh, strength and coordination. And um that often it shows up in a lot of people with FASD again because of uh the way the damage is is often uh seen. We have scoliosis, uh twisting of the spine.
SPEAKER_02I have I have that a little bit.
SPEAKER_01Yeah, me too. So um that would actually fall under motor skills because that stops certain types of movement and things like that, and I might not sit perfectly straight. So um another area. That's why we lean. Yes, exactly. And don't know it. I like I have to I have to actually straighten my shoulders so I know that they're straight, because I don't otherwise. And I've seen pictures of myself where why is my shoulder so high? And and that's something that I have to deal with. And one of the other things also is motor skills, getting the thoughts from the mind down to the pen onto the paper. That isn't necessarily a problem with any of the musculature, but it's the signal getting through that is that the problem.
SPEAKER_00Okay, so that's what's going on with my son, why he has such a difficult time even writing his name.
SPEAKER_01It very well could be. And um, yeah, I hadn't written in a while, and I started doing a lot of writing today, and boy, I need to practice. And I think for for me practical, but I've never had good printing or handwriting in script either. Uh and I noticed today that I would be spelling words out, but my hand would skip a letter. Wait a minute, there's an L in there. No, there's a I do that all the time. Yeah. And uh I do that often. It's not in the thought, it's in the transcription. Somewhere that I lose that letter while I'm writing, and that is uh a motor skill problem.
SPEAKER_00Yeah. You know, you you touched on something, um, and I'll just i you know, if if we don't continually practice something, we lose it, and I have to do that all the time. I'm good at writing, but I'm much better at it because I'm doing it all the time. I'm much better at reading and understanding and comprehending because it's a muscle, I feel, a domain that I'm working, constantly working. But if I stop reading for a while, then it I go back to having a difficult time understanding, comprehending. You know, it's we have to constantly be working the domain in order for it to grow, for us to those synapses to connect, for the synapses to connect. And if they aren't being used, then they kind of disconnect and we have to work at it again.
SPEAKER_01It's it's the same as um physical activity to stay in shape. Your brain needs that activity too. It's it's not a muscle, but it sort of responds like a muscle it does. So the harder you use it kindly, the harder it will want to work. Yeah, and um like I I feel bad for for parents who don't want their kids challenged, don't want them to experience um negatives, but those are often the best learning experiences. I tell people all the time I get everything wrong the first time. That's how I learn how to do it right. But if I wasn't allowed to get it wrong, I would never learn to get it right on my own. And learning that on my own is is that's like self-fulfilling. That makes me feel good above myself.
SPEAKER_00I always felt like the Thomas Edison in life. You know, I learned a thousand ways and it didn't work. And so then I just kept doing it over and over and over, and eventually I figured one way that worked, you know, but I had to do all the wrong things in order for me to get to that point. So yeah, I mean, that's a really good point.
Self-Forgiveness, Grace, And Hopeful Closing
SPEAKER_01Well, hopefully today we can save some people having to take all those extra steps and uh get them some ideas where where they can look and uh where they can find the support and the understanding that they need.
SPEAKER_00Well, yeah, to every kid or person, young person, um, or newly diagnosed, I mean, anybody out there that, you know, you feel like you're failing. You know, it took RJ and myself years and decades to get where we are. Decades, in fact, of failing, you know, and if that's the word that you even want to use, because I look at them as stepping stones. I don't look at them as failures, and I'm constantly working on myself. What I would say is you have been dealt a different hand. And we're, you know, we have to work a little harder than your peers, but you do have the tools. I think that the we have the tools that we didn't used to have. Or, you know, we make our own tools, we develop our own tools, we figure out how our brain works, and we, you know, utilize it in a different way. And we can still get to the end result. I really believe that because RJ and I have done that. So you have to believe in yourself because we are really special people. I believe that 100%. And we have so much to offer, and so much that people can learn from us. Is there anything that you want to say before um I close here, RJ?
SPEAKER_01Um, specifically to neurodiverse people. Um, step one is forgiving yourself. That's the hardest step of all I found was forgiving myself. I own all of the negative things that I had done. And um giving myself grace has allowed me to experience happiness. Like I am a happy old man, and I never ever could have envisioned that.
SPEAKER_02So that's wonderful.
SPEAKER_01But all of all of the results, they're my results. I my life to get better. Yes. So so for me, that's a very important thing that um like we we just it takes a while. You have to like stop and say, Okay, I screwed up, but it's okay. It's okay. I do that sometimes and start forgiving yourself with the little thing. Oh, I forgot my keys. Oh, I'm such an idiot. No, no, no. I forgot my keys. Sometimes I do that. It's okay, nothing's nothing's ruined. I'll just go back and get them. It's that self-conversation that's so important. So we need to forgive ourselves to be our best self.
SPEAKER_00Yeah, and I'm my happiest too. I I really love that you said that. And I also, you know what I say, um, is well, I really needed my steps today. Uh because I'll go up and down the steps ten times to to settle upstairs. I'll be like, yep, I forgot my water. Yep, I forgot my phone. Oh, my charger. Oh, and I'm like, well, I just needed my steps today, so that's how I handle it.
SPEAKER_01That's pretty standard here when I'm going out the door for a flight or something. My kid'll just get used to walking back it two or three times.
SPEAKER_00Okay, always, always, everybody's in the car. Everybody's always in the car waiting for me. And it's that transition to leaving. And it takes my my entire system to get ready to to leave. So I let everybody go first, and I do go in and out a few times, but I need that transition.
SPEAKER_01Yep. And you know, getting down on yourself for it, it doesn't help anything. So we just have to understand our brains work differently, and it's okay. It really is.
SPEAKER_00It really is okay. I I absolutely love who I am, and I wouldn't change me. I definitely wouldn't change RJ. He's a beautiful human. So don't let labels bother you. Don't let the label of fetal alcohol or whatever define you in however you think it is. I mean, we are beautiful people, and we are very productive citizens.
SPEAKER_01Yeah. You're you're allowed to define yourself. Absolutely. Absolutely. Don't, you know, you don't have to um other people give us the title or whatever.
SPEAKER_00No, no.
SPEAKER_01We take the title and make it our own.
SPEAKER_00And the younger you are, you have to give yourself more grace. I think that we have to give ourselves grace, period.
SPEAKER_01And sometimes as a parent or a caregiver or a friend, we have to sit out in the rain with our people for a while.
SPEAKER_02Mm-hmm.
SPEAKER_01Find their way into shelter. Sometimes just sitting with them in that is going to make all the difference.
SPEAKER_00Yeah. As we close today's conversation, I hope one truth stays with you. FASD is not a character issue. It is not a willpower issue. It is a brain-based disability. And when we understand that, everything changes because behaviors is not the whole story. Behavior is communication. It is the brain doing its best to survive, cope, and make sense of a world that often asks too much, too fast, and without enough support. And what RJ reminded us so clearly today is this support works better than shame. Always believing in ourselves works better than blaming. So if this episode opened your eyes or softened your heart or gave language to something you've been carrying, please share it. Send it to a teacher or a therapist or foster or adoptive parent or caregiver, someone who needs to understand what is really going on beneath the surface. And please make sure to follow RJ's advocacy work because his voice, like, is just so important in this space, FASD and the families who love him, and I am one of them. Go to Flying with Broken Wings and Red Shoes Rock on Facebook. And thank you for being here with us. There is no finish line on healing, only understanding, only compassion, and only becoming. So we'll see you next time on Real Talk with Tina and Anne. Thank you for being here. Thanks, RJ.
