When Trying Harder Isn't Enough: FASD Is More Than a Brain-Based Disability — Part 1

Welcome And Why FASD Matters

SPEAKER_01 0:22

Welcome to Real Talk with Tina and Anne. I am Anne. Today we're talking about something that is really personal to me: fetal alcohol spectrum disorder, or FASD. I live with the impact of it every single day, both because I'm diagnosed with it and my kids are diagnosed with it. Our guest today, Patricia or Patty Casper, wrote 4D Living with FASD, Shared Voices, Clear Understanding. And I have to tell you, this book, I'm not kidding, has changed the way I look at FASD. And I thought that I knew a lot about it. I even told my doctor or my kids' doctors, FASD, and she actually wrote me today and let me know that she's reading it. So um wonderful. Yes. So one of the major hospitals that has an FASD clinic is reading your book. So I'm so excited. I know. And I was messaging you, I was messaging Patty as I was reading it, telling her all the things that was happening in my house and how I was already responding differently because of what I was learning. So one thing that really stood out to me is that FASD isn't just about learning or behavior, it can affect the entire body, all the systems. And someone's abilities can change, which I know from one day to the next, sometimes even hour to hour. And I understand that because I am living, breathing proof of that. And so are my kids. I have spent my life building workarounds for things that don't come easily to me while I watch others do it so easily. So I am so glad that you're here. Patty looks at the whole person, how that brain and body works, how much energy they have, the environment they're in, and how all of that changes over time as we age. She also uses the beautiful picture of wildflowers. Some bloom after a fire, others need just the right rain. They don't need to become different flowers. They just need the right conditions to grow. Here's what I want us to think about today while we're doing this. How many people have been told to try harder or behave better when what they really needed was someone to understand how they work, a different environment, different supports. We're going to talk about diagnosis and masking and schools and physical health, the justice system, aging, and the strengths that people with FASD bring to the table. And this is not the last time. I hope that Patty will be on the show. We're going to meet probably a few more times because we need to break down her book more and more and more. There is just so much in it. So, Patty, welcome to Real Talk with Tina and Anne. I'm so glad that you're here. And thank you for writing this book.

SPEAKER_00 3:34

It is an honor and privilege to be here with you, Anne. I so enjoyed the last candid conversation that we had on my podcast. Yes. Yeah, not too subtle hint there, right? Um, living with FASD, candid conversations with Patty Casper is uh my space. And um yeah, it's it's an honor and a privilege. Anytime we get together, it's such joy. I also live with FASD. And um, you know that it this book has been a true journey.

What FASD Is And When Harm Happens

SPEAKER_01 4:08

Well, I wanted to first ask you exactly for our listeners who don't know what FASD is, what is it and when can a baby actually uh be affected in utero by alcohol and how many drinks does it take?

SPEAKER_00 4:27

That's not one question. That's quite a loaded, quite a loaded um segue into the rest of the conversation. So fetal alcohol spectrum disorder, or FASD for short, is an umbrella term under which there are many different diagnoses, but all of them have to do with the collection of effects that come from prenatal alcohol exposure. So most people um going back decades assume that it's all about the face, right? Because there's something in fact, decades ago, medical personnel had a different nickname for us, uh, a different abbreviation. It wasn't F A S D, it was F L K. Funny looking kids. What was it? Funny looking kids. Because this is called the filtrum, and with people with FAS, which is one of those diagnoses under the umbrella, um, it's longer and smoother, it comes with a very thin upper lip. Other hallmark sign, yes, you have that. The other hallmark sign is the the eye openings are smaller, and um, and I have that, but I don't have this. So most for for a long, long time, for too long, and even today it continues. People say that 10% of people with FASD who have the FAS diagnosis, which is fetal alcohol syndrome, are the most severely impacted. And I am one of a great many people who challenge that belief because where you have the visible symptoms of a physical disability, you get services, you're identified and you're supported. Whereas the other 90%, like me, are never identified. And therefore, when we when our behaviors are impacted by the prenatal alcohol effects, it's we're judged. We're dumb, we're lazy, we're stupid, we're not trying, we're not motivated, we're manipulative, yada yada, yada, yada, yada.

SPEAKER_02 7:02

Yeah.

SPEAKER_00 7:03

Um, now you asked the question about at what point in the pregnancy does that exposure matter and how how much alcohol does it take to cause notable effects? Well, here's the thing alcohol chemically is a solvent, right? That's why they use it in laboratories to preserve things. It's a solvent, it dissolves fatty tissues. Well, every protective membrane in our body, every single one, is made of fat and gets dissolved. Okay, which is why alcohol is more damaging than any other drug that can be in mama's system during pregnancy. The one that comes the closest is fentanyl, but alcohol beats them all. Oh my goodness. It's more dangerous than heroin, it's more dangerous than methamphetamine, it is it's more dangerous than marijuana. And don't get me started on that. Oh, let them let them smoke to come for morning sickness. Yeah, no, bad idea. Right. More damaging than cigarettes. I mean, it it because it dissolves the cells.

SPEAKER_01 8:17

And also when they breastfeed, it still affects the baby. And I don't think that people realize that.

SPEAKER_00 8:23

Yeah, my mom used to um talk about, you know, I mean, she has dementia, so she doesn't her she just doesn't go back in time the way she used to, but she used to always talk about her frustrations feeding me because I kept falling asleep because I was getting drunk.

SPEAKER_01 8:41

Oh my gosh, that's crazy. Yeah, yeah, you know, but we know so much more now than we did back then. Yeah, I mean, in in fairness, they really didn't know that back then. I mean, even with cigarettes, I mean, everybody smoked, it was just a thing.

SPEAKER_00 8:56

But now no more smoked and drank every single day of her pregnancies because nobody knew. You know, I was born in the early 60s, nobody knew because FAS, the first of the diagnoses under that umbrella, was wasn't found until 1973. You know, we're in reality, wherever however long we've had alcohol, we've had FASD. We just didn't recognize it, we didn't know what it looked like. And eventually someone realized hey, these funny-looking kids, they have alcohol in common. You know, the other thing to keep in mind with pregnancy and alcohol exposure is that it's not just about the brain. It doesn't just damage the brain, it damages whatever it comes in contact with, whatever is developing at the time of exposure, whether it's the physical structure is being formed or its function is being programmed, that gets disrupted.

SPEAKER_01 9:57

Yeah, I really believe that people do not know that.

SPEAKER_00 10:00

No, they didn't know it. And unfortunately, Ann, I I genuinely believe this. We are learning more and more and more now. More people are hearing us as we speak up and we educate every September during International FASD Awareness Month. Um, however, it's not really sinking in, it's not sticking.

SPEAKER_02 10:23

Right.

SPEAKER_00 10:24

People still go back to what they've heard for decades. Right. Um, so it it's an ongoing um battle, if you will, to change our culture.

SPEAKER_01 10:35

Yeah, I mean, there's so many people that are not diagnosed. There's so many of us walking around that have it, that have no idea that they do. And I mean, it might have or probably has something to do with stigma, why people don't go to that. But

Stigma And The Hidden Majority

SPEAKER_01 10:51

it also makes me wonder why doctors are so reluctant.

SPEAKER_00 10:54

So stigma is a big piece of that. Um, I've interviewed from for my podcast, I interviewed Ken Jones, which is the guy who has, you know, he he's the one that everyone credits for discovering FAS.

SPEAKER_02 11:09

Okay.

SPEAKER_00 11:09

Um, in 1973. He's been on my show a couple times. Okay. In in our first conversation, we were talking about stigma. And he talked about how women using alcohol during pregnancy are the most stigmatized population that he can imagine. They are judged more harshly than women who use other drugs. They are judged more harshly than women felons.

SPEAKER_01 11:36

Yeah, because you're hurting a baby. I but yeah, yeah, they are there.

SPEAKER_00 11:41

But the truth is, the truth is, 99 at least 99.9% of women, as soon as they find out they're pregnant, they make those lifestyle choices um changes. Right, right. They do now. They they stop with a coffee, they stop with a wine, they stop with the you know, junk food, they make those choices to the extent that they have the knowledge, right, and they're in a position where they can. You know, there there are women who who have an addiction where it's extra hard. Or there are, you know, there are women, you know, if you live in an area that's a food desert, it's hard to say, okay, I'm gonna eat healthy now. Easier said than done, right? But it's hardwired into our nature as women to make those changes when we know better. When we know better, we do better. And that goes for any kind of topic. That's true. However, by the time women find out that they're pregnant, oftentimes the damage is done. Right. Because you asked how how you asked how much alcohol. I I interviewed a uh doctor. She is she's got a degree not only as a medical doctor, she's a psychiatrist, but she's also has um master in public health. Um, and she's she's got a wonderful book too. Um, but she said one alcoholic highly concentrated alcohol, alcoholic drink, right? Like women drink more cocktails than guys, right? We like the fancy foo-foo drinks. Think of a Long Island iced tea, right? There's six shots of liquor in that, in one drink. Wow. Or think of an Alabama slammer. I've had a I've had a couple of those. Right. You don't taste the alcohol, and they have seven shots of liquor and one shot of orange juice to cut it.

SPEAKER_01 13:26

Wow, that's a lot.

SPEAKER_00 13:28

My go-to was not one drink, is enough. Wow.

SPEAKER_01 13:31

That's really scary. And you're right. A lot of women don't know they're pregnant until you know they've already had quite a few alcoholic drinks, and then they do stop, but it's it is it it's too late, unfortunately.

Patty’s Path From Practice To Advocacy

SPEAKER_01 13:43

I want to go back to your story for a second because you do um know that you're FASD. How did that come about?

SPEAKER_00 13:51

Oh gosh. So I my career at this point is 40 years. Um I've done a lot of things. I started in addictions, I went to mental health, I've been a clinical director of a psych unit. Um, I 20, 28, 27 years ago, I moved to California because I met my husband online, which meant I had to backtrack out of therapy and go back to my social work hat. And um, it was in that field trying to pursue the answer to how can I better support the women and the families and the kids on the caseload, right? Because you see foster kids gotten bumped, bounced around from home to home to home to home to home. You see even adoptions failing. Why? Because we're not providing adequate training. We're not giving these families who who have the best of intents. Well, at least the agencies I worked for, we screened out the ones that looked at it like a paycheck. But families come in with altruistic beliefs. Love is enough. I'm gonna I'm gonna fix this child, I'm gonna take away all their hurts, I'm gonna bring, I'm gonna love them to health, and it doesn't work.

SPEAKER_02 15:02

Right, right.

SPEAKER_00 15:03

Because you know, we're starting to teach them about trauma, knowing, and and every child with FASD has trauma. They started their life with brain injury, they have trauma.

SPEAKER_03 15:15

Right.

SPEAKER_00 15:15

Um, they're so overrepresented in the foster care system compared to um kids without impact. Yeah, but knowing about trauma is not enough. Um, and I think even the neurobehavioral model, which is um has been very, very popular for the past 10 years or so, um, I don't think even that is enough because it overfocuses on brain and doesn't look at all the physical aspects and the constant interaction between the two. Okay, right. That makes sense. Yeah. Yeah. So yeah, and in my book, there's nothing, there's nothing really new, but nobody has put everything together before.

SPEAKER_02 15:57

Right.

SPEAKER_00 15:57

That's what I bring to the table.

SPEAKER_01 15:59

Yeah, not like this. I mean, it's it's like the DSM of FASD or something. It's like the encyclopedia of it, or you know, I mean, it really does make you think. I have highlighted just about every word on every page.

SPEAKER_03 16:16

Oh my goodness.

SPEAKER_01 16:17

Because now, don't get me wrong, I have had many people on about FASD. I have researched it myself, I have looked into it, but this is like the encyclopedia of it. I mean, it really does put it all in one book in a way where you can see it. You can talk, you can listen to other people's words that have it. You can look at the professionals and what they've come to. And um, yeah, I I really think that it's genius. I I all I um you want a secret, Ann?

SPEAKER_00 16:51

Sure. It's just the first half. Okay. The sequel's coming next year. That's great.

SPEAKER_01 16:57

I mean, oh my gosh.

SPEAKER_00 16:59

So for your audience, um, what I did is I took the transcripts from my podcast. Um, and it, you know, at this point, I'm, I think this week was uh episode 145. So it's still a baby podcast. Um, but at the time that I wrote the book, I was by the time I was finishing the book, I was like 130 episodes in. Um, but I took the transcripts and I took the outline of everything I wanted to talk about. And I and I went to AI and I said, find the quotes that fit into my outline and seed these gems of wisdom from all my guests. And then I'll build it from that. And, you know, my my guests are people with living experience, you know, who like you and I are, you know, living with the effects of prenatal alcohol exposure. My guests are people like you who are both living with it yourself and parenting.

SPEAKER_02 17:59

Right.

SPEAKER_00 18:00

They are professional, they are people who are both professionals and someone living with it, like me. You know, and the professionals are are all different stripes, right? All different pedigrees of expertise. Yeah, you do. You have it all. But that's that's the way my mind works. I want to learn about something from every angle and really put puzzles together.

SPEAKER_01 18:23

Right. Well, you do a really great job at that.

The Neuroprint And Missed Diagnoses

SPEAKER_01 18:26

I would like to start breaking down your four-dimensional approach because I think it helps us and I like your charts and everything that you have in your book. Um, but let's start with the first dimension, the neuroprint and physical profile and all that stuff. Um, what is that?

SPEAKER_00 18:44

Okay, so a neuroprint is my cutesy language for a common teaching within the neurobehavioral model is that we, each of us, no matter who we are, no matter what diagnoses we may or may not have, we each have our own unique combination of strengths, of challenges, of preferences and interests, and and the way that we learn in various circumstances. And that combination is as unique to us as our fingerprint. But since that's all hardwired into this, I call it a neuroprint.

SPEAKER_02 19:23

I love it.

SPEAKER_00 19:25

That was the birth of that um that word. So um the first dimension is is the neuroprint and the physical effects of PAE. Now I want to backtrack on this because this is not my first book. My um and and I really want to get to this little bit of history, you know, as a social worker in the foster and adoption space, always wanting to make things better, right, is when I started studying FASD. And it was um looking at the all all the the realities that very few of us are diagnosed. Only, what is it, 2% of P of kids are ever assessed for it because people they they say, oh, it's ADHD, they say it's autism, they say it's ODD, it's RAD, reactive attachment disorder, this, that, the other, right?

SPEAKER_02 20:22

Right.

SPEAKER_00 20:22

No one ever thinks about prenatal alcohol exposure, so it gets missed, but it's the central hub around which all those other things circle.

SPEAKER_03 20:31

Right.

SPEAKER_00 20:31

Um, but because you can you can use medications for a lot of those other things. So you give them a pill, you send them on the door, you assign them to X number of weeks in a social skills group or a therapy. Um and then you can just write it off, right? You can chalk it up to bad behavior, yeah, air quotes for those people who are only listening.

SPEAKER_02 20:52

Yeah.

SPEAKER_00 20:53

And um, and it was when I realized that so many of us are are missing. We don't like me and like you, we grew up not understanding why things were hard for us when they seem to be so easy for other people. And where you have, I mean, that is such a critical question that undermines any self-confidence in anything.

SPEAKER_02 21:18

Yeah, right.

SPEAKER_00 21:20

It drives the mental health numbers that our population has.

SPEAKER_02 21:24

Right.

SPEAKER_00 21:24

We have so much more mental health issues. It was realizing that so many people like you and I um just didn't understand why things are hard. Why would you know something that was a question that that I was kind of accusingly faced with over and over and over again in my transitional years was you're too smart to have done that. What were you thinking?

SPEAKER_01 21:48

Oh my gosh, I could say that over and over about myself.

SPEAKER_00 21:52

Yeah, and and I can tell you uh intellectually, yeah, I agree. I challenge myself with the same question. Right. What does that generate? Shame that is so strong that it is paralyzing. Right. And then you stay in that situation because you're paralyzed with shame.

SPEAKER_02 22:12

Yeah.

SPEAKER_00 22:12

And so I started um I started writing a book. My my favorite book on trauma is called Uh Conversations with a with a rattlesnake. Fantastic book. Um, you in fact, you could probably speak on this and get the author on your on your podcast. Her name is Kim Barthel. She's a Canadian out of there, out of uh, she's a therapist out of Canada. She wrote this and it was a fat book, but it was addictive reading. I could not put it down, even though I already know this trauma stuff.

SPEAKER_02 22:42

Yeah.

SPEAKER_00 22:42

But you turn every single page because you just want to learn more. And it was the the entire book was a series of conversations with one of her former clients who had so much PTSD from his childhood that the NHL didn't want to work with him anymore.

SPEAKER_02 22:59

Okay.

SPEAKER_00 22:59

That's saying something. Yeah. But you the reader wanted to learn about resilience and all the protective factors and all these other things. And the idea came to me in the middle of the night use that technique to educate people about trauma or about FASD. And as I started pondering that in the morning, I started, okay, every chapter is going to be a conversation with a different adult who, like me, learned during adulthood that they're living with FAST.

SPEAKER_02 23:30

Right.

SPEAKER_00 23:31

And um, it was in that process of write of the research for that book. I came across a quote from some very well-known uh researchers, uh, Svetlana uh Popova, um, Larry Bird, and Dozet, Daniela Dozet. Um, they had at the at the top of their paper, of one of the papers that they've written together. Uh, we really owe it to the 1% or to the 99.99% of people living with FASD who are undiagnosed. That really struck me.

SPEAKER_02 24:07

Yeah. Oh, yeah.

SPEAKER_00 24:08

Look at how many people do we have in our country, how many adults in our population? 99.99 undiagnosed. That's FASD. So if you if you put the stats together, what is the percentage of people? You know, 7% of women, even the recent studies, 7% of women indicated to the government, you know, what during the the um surveys that are done for health and human services that they drank during the last 30 days of their, you know, most recent 30 days at the time of the survey that they had drank during their pregnancy.

SPEAKER_02 24:45

Yeah.

SPEAKER_00 24:45

That's one in 14 women. 99.99 of those. We've got twenty nearly 21 million adults in this country who don't understand why life is so hard. That changed me from working with kids and family to trying to find those adults who are lost, who are who are just wrapped up in shame. And I'm still trying to um just to to reach people that think they know things that don't have the full picture.

SPEAKER_01 25:12

I have a feeling that we've just scratched the surface, you know. I mean, especially with even some of the big experts, like you just said. I mean, people that really do think that they know it. I think just even, and I really respect our FASD doctor. I mean, I think that she's brilliant. I think that she knows a lot. I mean, she's really helped us with our situation. She is all in. Um, but you know, she is willing to learn. And she is reading my book, she's reading your book, and you know, I think that that's great that she can write me and say that she's reading these and she's loving them. So I think that that's great and that they're willing. And that's really what it takes, right? I mean, it for them to be willing to listen to us because it does give them a different perspective.

Why IQ Scores Mislead Schools

SPEAKER_01 26:03

You you also described the averaging effect, and someone's strengths and struggles can disappear into one IQ. And what why can that's that score, which I just can't even, you know, that score sometimes can be so misleading about how we actually function day to day. So can you talk more about that? Because I just think that it's just it's not even measured correctly.

SPEAKER_00 26:34

No, no, it's not. That the IQ test has been so misused. It wasn't designed to be used to screen people out of things. It was meant to screen people in.

SPEAKER_02 26:50

Right.

SPEAKER_00 26:50

The other piece of it is if you look at disability, there's there's two, it's two prompts. One is intellectual functioning, because if if your intellectual capacity is very, very low, you are gonna have a tough time in life. There's no question. But then there's adaptive functioning, which is your ability to navigate life, it's your ability to reason things, it's ability to um have executive functions. All an IQ test measures is your ability to take tests.

SPEAKER_02 27:21

Right.

SPEAKER_00 27:22

That's it. You know, you 100% agree. You can be brilliant and not be able to find your way out of a paper sack.

SPEAKER_01 27:30

Yeah. It doesn't, it doesn't really measure anything at all. Your ability, I mean to live like it, and it it doesn't show the ups and downs to, you know, for one thing, my um one IQ score is like 130, but then you put in working memory and executive functioning and it just plummets. I mean, so what's what score do you go to? Because honestly, I can't do anything without my working memory and executive functioning. I mean, those things are really important. So, you know, I I guess I fall somewhere in the middle. I'm not really sure. Um, so we never really have an and and and the schools use my, you know, IQs and numbers and measuring and all that other things to prove their side. And it's just like, but that doesn't reflect what he can really do. And it's just so frustrating. I mean, like people also, you know, with my podcast, they hear, they see, they can witness in real time how well I can function on here. But, you know, they don't understand that I was nonverbal, that I have worked and worked and worked these muscles and these this ability to the point where I can do it now, but I also still, still need a lot of helps in order to do it. They don't see all the stuff that I do behind the scenes, and sometimes, you know, um, I know exactly what I want to say, and but I can't find the words or organize my thoughts and uh my executive functioning and working memories always getting in the way.

Potential Versus Capacity Day To Day

SPEAKER_01 29:02

So, um, Patty, how can someone have strong abilities in one day and can't access it the next?

SPEAKER_00 29:11

Loaded question. Well, you know, you you brought up a really good point before I get to that, and super good point is that potential does not equal capacity. Yes, yes, right, yes, the IQ will give us potential, yeah. Right, it tells us that at one point we got this, right? We were able to perform that doesn't show everything that went into getting ready for that test. Right. And yeah, to assume that because we performed something at this level on a Monday means we can always perform at that level is naive. It's wishful thinking.

SPEAKER_01 29:51

Right. It's not possible.

SPEAKER_00 29:53

It's it's the misbelief, it's it really is a delusion that we you know to confuse or conflate um our our best potential, our best capacity with our consistent availability, our consistent capacity to do those things. They're not the same thing, right? We uh we are a multi it's okay. I've I'm I have like a gyroscope going off in my brain right now. I'm all over the, I'm just twirling with all my thoughts on what to say first. In writing, in writing sit by sip, it was about finding people, um, holding up the mirror by which people could recognize themselves.

SPEAKER_02 30:36

Okay.

SPEAKER_00 30:37

In writing 4D, um, there's there's an evolution, how I got from one book to the next. Um, about a year and a half after Sip by Sip came out, I put out the second edition of it and I added things to it. I, you know, a couple extra interviews, but also my thoughts had changed a little bit. And this is part of the journey. One of the things about the spectrum of FASD and so many other neurodivergencies like um autism, it's a spectrum, right?

SPEAKER_03 31:11

Right.

SPEAKER_00 31:11

Um, it's a linear spectrum with high and low functioning, one end to the other, right? And a lot of it has IQ tied to that, right? If someone um, you know, is very eloquent, they can speak well, they can test well, then they're high functioning, right? They get they get Asperger's label, right? Right. Or if if their diagnosis, you know, the their collection of symptoms, right? I hate that word, um, is very incapacitating, then they're judged to be low functioning, right? As if it's a flat line. Right. One of my podcast guests, he's a former ENT living with FASD. He said the only flat line is a dead person's EKG.

SPEAKER_01 31:55

I like that.

SPEAKER_00 31:55

I like that all that's not that's not life. No, that's not life.

SPEAKER_01 31:59

That's nothing is a straight line, right?

SPEAKER_00 32:02

But it's even the medical field knows this. That's why they take our blood pressure every time we show up.

SPEAKER_02 32:08

Yeah. Because it doesn't stay the same. Right.

SPEAKER_00 32:12

Right. And if we have white coats syndrome, meaning we get very anxious about our blood pressure, which I have to the doctor's office every time you take it and it's sky high, but by the end of the end of the office visit, they'll take it again and it'll be much lower.

SPEAKER_01 32:29

Right. That that's me. Yep. You just yeah, every single time.

SPEAKER_00 32:33

It's it's not a straight line. So, you know, the more I thought about that for the second edition, I had come up with this geometric shape, you know, like a a multi-sided die. You know, think of, you know, if anyone in your audience has ever played DD, Dungeons and Dragons, there's a 20-sided die, right? So it's basically like a globe, but there's flat, you know, or or think of um, think of as a little girl's necklace where they have those plastic beads that are cut to pretend that they're diamonds, right? There's all those facets on them, right? Each facet is a function of the way we interact with the world, right? It might be our ability to make choices, it might be our our working memory, it might be our ability to um put things in a proper sequence, it might be our physical uh impacts of PA. You know, any kind of thing that our brain does for us gets a facet on this shape, on this geometric shape. Right. And I thought, oh, this is great. Now, people, if they if they can get that concept, they can understand why when they go through the psychological testing for FASD, right, our our results are always what they call scattered findings. And again, air quotes for those who are listening, not watching. Um, you know, scattered findings, how many people are tested? And the doctors say, I don't see any patterns here. You're fine, go back to therapy. Scattered findings are the findings for FASD.

SPEAKER_02 34:08

Okay.

SPEAKER_00 34:09

We don't have a particular, you know, like I often will will describe this too, like dementia is another neurodivergence, one that my mom has. There's different types, just like there's different types of FASD. Um, you know, like like Alzheimer's has a regular decline, pretty smooth, you know, and and your level of functioning. Frontal temporal lobe dementia is looks like steps going down. Okay. Whereas Lewy body, which my mom has, looks like an EKG. So it's this the same kind of thing in the way that we function. And so I was like, it about a year after the second edition, what came out, I was like, wait a minute, time, time, time is the fourth dimension. Right. You know, because the shape I came up with was a three-dimensional shape. So it was like time is the fourth dimension. So I'm like, oh yeah, that makes so much sense because our needs change over time, our abilities change over time. They um the skills that we have, you know, the way we accommodate some of our challenges. When life roles change, we all of a sudden those things don't work anymore.

SPEAKER_02 35:18

Right.

SPEAKER_00 35:18

Right. And so we have to reinvent the wheel and come up with what does work. So time is significant. And then I realize, you know what? How can I have time as the fourth dimension if I never named dimensions one, two, or three? So

The 4D Model And Time

SPEAKER_00 35:31

the neuroprint is the first dimension. It's the most fundamental aspect. It's who we are, it's what's hardwired into us, into our mind, into our bodies. Right. Yeah. It's it's what makes us who we are. For those of us, you know, and and one of the beautiful things is uh the the previewers that I had that read my book said, oh, this book applies to all the other neurotypes, right? Autism, ADHD, chronic illness, trauma. Um, you know, it's it's universally applicable. But for those of us who are affected by alcohol, um, the the the first dimension is everything that is attributed to the effects of alcohol show up physically in our physical brains and our physical bodies. That's the first dimension, D1. The second dimension is energy, which includes our metabolism. Yeah, you know, for many of us, like our psych our circadian rhythms are part of that, you know. So we call some people night owls, right? Their circadian rhythm is flip-flopped, right? Right, right. One thing I learned, and I don't know if you've learned this yet. Our circadian rhythms are set while we are still in the womb.

SPEAKER_01 36:48

Oh, I didn't know that.

SPEAKER_00 36:49

Yeah, yeah. We get those, we get those from our mom.

SPEAKER_01 36:52

Oh, great. Oh my gosh. I mean, my biological mom was a mess. So I don't know. I mean, lots and lots of trauma on top of the uh the alcohol use and drug use, and and uh she actually was raped. And so I'm a product of rape. But on top of that, um, it was uh she was beat while she carried me. So, you know, there was um, yeah, so yeah.

SPEAKER_00 37:26

So no, know this that you were known and loved from before when you were conceived.

SPEAKER_01 37:34

I believe and I didn't always, because I did own a lot of that because you know, I had such a hard childhood. Um, but now I have such purpose, and you know, I mean, turning pain to purpose has always been my thing, but I mean, I 100% believe that I was supposed to be here. So that's fine.

SPEAKER_00 37:54

We are fearfully and wonderfully made. And sometimes, yeah, sometimes when you make a dish, you know, if you're cooking and you make a dish, there's an ingredient in there that you don't like. Yeah, but once it's all cooked together, yeah, you you appreciate, right? My favorite example of this is a pot roast that I make that was um the recipe was a tribute to James Beard, who's a very famous chef who's who's gone, may God rest his soul. But there's horseradish in it. I don't do hot, I don't do spicy horseradish. Are you freaking kidding me? But when it's cooked, it adds something so savory, yeah, that it really is the superpower.

SPEAKER_01 38:41

You know what? I love that. I love that because even the some things that are the hardest parts of us or the most spicy parts of us, I guess you could say, are sometimes it just takes the rest of us up a level, you know? It does. So I really love that. Yeah, and I'm okay with that. You know, my story is my story, and I'm okay with my story, you know. The and you know, writing books, what it does. I would rather write a memoir, write a book, than go to therapy. So I mean, that is methartic, isn't it? It is, it's my therapy, and I have come between the podcast and writing, I have I am one with myself, I am fine with who I am. So it it is fine.

Energy Battery And Metabolic Tax

SPEAKER_01 39:31

I want to get back to the dimension, the second dimension, um, because you do talk about the metabolic energy tax. And yeah, you know, we all, I mean, we have a battery. I think that we all do to a certain extent, but I think that those of us living with FASD, it gets drained so fast quicker, it really does. And then we go out into the world, and we might not even be going out with a full battery. So, you know, for those of us who probably not, we aren't. It's a given. We aren't. So we're operating on a very low, low battery a lot of times. So I mean, like, go ahead.

SPEAKER_00 40:20

I don't care if you know, as your audience, if they prefer Energizer or if they provide preferred crescell or you know, any whatever the brand of battery that they're familiar with. We all know and appreciate that batteries have a finite capacity, right? They're not limitless, limitless, they need to be recharged, or they will die. Right. Think of think of your phone, you know. When when you get that red light, you better plug it in, or you're not gonna get your alarms, you're not gonna get your phone calls, you're not gonna be able to ask Google anything. Yeah, see, and that's it's gonna be dead in the water. Is uh every everything requires energy.

SPEAKER_01 41:05

What are some signs though for people raising kids or maybe even with themselves that they might have not been realizing that look, these are signs that your battery is low and you need to take a break, you need to recharge.

SPEAKER_00 41:21

My favorite example of this that everyone's gonna be able to relate to. How many of you in the audience have seen the Snickers commercial? Yeah, right, where one person in in the in the midst of their family or friends is actually someone else, someone who's very grumpy, right? And they get handed a Snickers bar and all of a sudden they're back to themselves, right? Right? That concept of hangry, yes, right? We get irritable when we're hungry. We also get irritable when we're tired, yeah, right. When we're dehydrated, yeah, right. Every and every single thing has a cost. Now I want to get back to this point. It's not exactly that it's not the same point, but I want to I definitely want to make it. And keeping our heart going at a steady rhythm costs our body energy, keeping our lungs going in and out, in and out, in and out, that costs energy. Having this conversation, you and I, costs energy.

SPEAKER_02 42:21

Right, right.

SPEAKER_00 42:22

Now, because with FASD and various other, you know, effects of various other drugs or other metabolic conditions, um, but especially with the alcohol that does so much neural injury to our brains, right? We have a lot of detours from the way the circuits are supposed to be laid out. You know, alcohol in a baby's brain during formation is like an IED going off in the brain. The effects are scattered. Whatever, whatever has died, there there you have to reroute all the circuitry. Right. Well, think about when you're going, when you're driving somewhere and there's so much construction on the main highway, you have they have detours, right? Well, what do you have, what do you have to watch for with the detour? You watch your gas tank and you watch time and you watch the clock. Right. And you always worry about are you gonna get to your destination on time? Are you gonna be late? What are the ramifications of all that? And you put those three things together and you end up draining that, right? Right. The same thing happens with us living our lives, all of our physical structures and the routine things that people take for granted cost energy. But if we are spending more energy than most people because of all the detours, yeah, our batteries go down faster, faster, faster, faster, faster.

SPEAKER_02 43:54

Yeah.

SPEAKER_00 43:54

Now everybody is gonna have a different place in their body where they feel the first hints that there's a problem. With some people it's um, you know, getting irritable, right? With some people it's getting um checking out. You know, they withdraw, they go, they go silent, they may leave the room. Um we all have different tells. You know, when my pain levels are up, I go silent. I just, I just, I, I back away. I'm still present, but I'm quiet. So if I'm quiet, because I I'm not quiet very often, that's one of the things to check for how you feel, right?

SPEAKER_01 44:33

You know, I I ignore my symptoms so much that I get myself into situations where I um because I have so much going on in my life to begin with that I'll be in a situation and all of a sudden and I've had this happen to me a couple times and I know what it is, but it's um my brain just shuts off. It just shuts off from not being able to handle one more thing. I mean I I come back and I'm fine. It's not a seizure it's not anything it was complete and utter overload to my system to the point where it had to take a second break.

SPEAKER_00 45:15

Yeah you know and and our brains will do that. But it's not a big mystery thing. You you you asked me well how do how will a parent know right every parent knows when their child needs a nap before the child is ready to admit that.

SPEAKER_02 45:30

Right.

SPEAKER_00 45:30

So it's not rocket science. It's just a matter of paying attention.

Environment Sensory Load And Expectations

SPEAKER_01 45:35

Yeah it yes it is yeah and you know we get into dimension three which really I think pays it's it has a lot to do with what we're talking about in two and that's environment.

SPEAKER_00 45:46

They're very interactive all these dimensions are very interactive all the time.

SPEAKER_01 45:51

Well the the third dimension is what we're talking about here with environment and I mean it really is everything to me with noise and lighting and sensory demands and expectations and even the people around us because I know that that really does have a lot to do with it. I need space. I've always needed a lot of space around me for me to be I'm not the person that's going to be looking you in the eye. I'm not gonna sit directly across from you I'm gonna have to sit diagonal for me to be able to really hear you because I can't hear and look and see and all these things all at the same time and be able to be my best self. I can't do it. That's just the way it is so can you talk more about dimension three and how this helps you know how it hurts or helps people with FASD.

SPEAKER_00 46:41

Well you already nailed a piece of it and that's environment is not just about space it's also about people and relations relationships right and expectations the expectations is an invisible aspect of environment right right so primarily what we think about with environment is the way our bodies interact with the physical space around us that's what our sensory systems do. Right five of our senses tell us about the external environment right we have we what we see what we smell what we can taste what we hear right and what we can feel our tactile sense. But we also have three senses that tell us what's going on inside right we have the vestibular sense which tells us where we are in space right it's like our internal gyroscope you know um we have proprioception which tells us what our muscles are doing right okay gives us our sense of movement it's how um it's how you can move around your house in the dark without being able to see anything okay okay um and then we have interoception which tells us our body states that's our hunger our thirst um that kind of our our pain okay so all of those are very important and they're very much part of the environment you know I mentioned I mentioned pain earlier that's part of the environment even if it's not outside of ourselves it impacts how you know if you're in pain your your battery's gonna go down really really really fast. Right true right and it doesn't matter if it's like a chronic pain condition like fibromyalgia how many of us Americans have that right or if it's from stubbing your toe right um no but it's also has to do environmental also has to do with the relationships around us. If you are someone in a classroom who gets picked on hello how many of us with FASD get picked on all the time because we're different kids are cruel. Yeah that for sure I was bullied yeah yeah anyone who's different you know air quotes again gets targeted right they get othered yes but yeah when you are someone who is subjected to that and those are microaggressions they are little T trauma there's you know maybe nothing horrible ever happens but it's still trauma right um that sucks down the energy and that also impacts the the neuroprint and who we are and how we see ourselves all that stuff. So everything interacts but those expectations too of normalcy right the way we are expected to perform whether it's a quiz at school whether it's social etiquette at the dinner table whether you know all these things that anything that anytime there is a should involve you know and I just did air quotes again I've got to stop doing that anytime a should is involved that's that's an expectation and it's a value judgment.

SPEAKER_01 49:55

Well you know what's interesting is you talk about um should or you know thing expectations whenever I go into situations like that I instantly don't know what to do. Even if I do know what to do normally I instantly don't know what to do. So I have to watch everybody around me. I always make sure like say I'm at a buffet so I watch the person in front of me I watch which forks and spoons I'm supposed to use I you know I just watch everything I be I just am very vigilant. I mean I swear in school they probably thought I was cheating because I never understood what the teacher said. So I always had to look around me to see what they were doing in order for me to know what to do.

SPEAKER_00 50:35

And right there you went off a visual clue instead of auditory.

SPEAKER_01 50:38

Right. I had to do that all the time because you're a visual learner. Well you know we have workarounds and we have tool belts and we figure it out and we always do figure it out. So because we're tenacious and that's the thing is I can remember a teacher telling me you know well why aren't you taking notes? You're the only one in the class not taking notes and I just said I don't know. So that's a whole different part of this it's a different side of it because when someone spends years being told that their neurological struggles are bad choices bad behavior or character flaws they can begin to believe that those things they can believe those things about themselves and I did and I couldn't figure out that the harder I tried the more I tried to do what everybody else was doing and I wasn't able to I really did feel like there was just something wrong with me. So how much damage can we do when we keep expecting someone to change instead of recognizing that the environment and the supports may need to change you just you just spoke beautifully to D3.

SPEAKER_00 51:46

Yeah it's that's what it is but people don't think about those things because they're part of the invisible aspect of environment right yeah but even even focusing on the visible pieces is so powerful you know we everybody and this is part of the neuroprint our our sense our sensibilities how much stimulation do we need for each of our sensory systems do we seek out visual impact in or information or do we prefer you know do we like the busyness or do we prefer a zen environment ever or something in between I have to have an earbud in my ear and when I sleep with just noise of either the news or a TikTok or whatever.

SPEAKER_01 52:34

And I keep it in my ear a lot of the times during the day even because it just takes out the noise of my brain it's what I need to be able to function well.

SPEAKER_00 52:44

It's really strange it I use my tinnitus for that oh oh wow that would be loud screaming for decades now oh no oh no though that's that electronic squeal oh no that's not good i wouldn't I go ahead my my point is everyone's different right and that's part of the the point of this book is that we are all so unique in that and coming out of this you know when you have D1 through D4 and and four is time we talked about that already um I have one of the tools that I have in this book is what I call the neuroprint passport and that is where we document all those details about what makes us tick.

The Neuroprint Passport Tool

SPEAKER_00 53:32

Yes talk more about that so if I know that I um when I get stressed out what helps me is deep pressure then I'm gonna document that on my passport and you carry it with you that you carry it with you you share it with your medical team or your therapy team or your employer right it is the document that you share with the world about this is how you will get the best out of me.

SPEAKER_01 54:01

Right. I really love that because sometimes you can't speak and tell so to have that on you to be able to or maybe they find you in a car accident or something like that and you have it on you when they're looking for ID and they can find that.

SPEAKER_00 54:16

Or if you're completely overwhelmed and you go mute which I have done it speaks

Wildflower Brains And Resilience

SPEAKER_00 54:21

for you.

SPEAKER_01 54:21

You know another part of your book that I love that I really need to get into here for today is the wildflower imagery which is one of my favorites I mean the first time that I heard about this Jody Culp who we both know um and love told me that you know you two wildflower brains need to meet and I was just like oh okay and I was thinking what but I was thinking at the time okay but what is a wildflower brain so now I know because in your book you talk about flowers that want that wait for the right conditions and even flowers that grow after a fire.

SPEAKER_00 55:03

So what made you want to grab that imagery to represent us so yeah this is this is another journey something that has evolved over the course of writing the book yeah okay think about alcohol has been called wildfire or or um fire water sorry it's been called fire water right alcohol fire water okay yeah so think about fires you know I before I moved to North Carolina or North Dakota I was living in California which is perpetually on fire um burning again with empty reservoirs they have not learned their lesson that's another story what do you see after a wildflower or wild fire right what's the first thing to come back the wild flowers okay I did I didn't even know that so that's interesting to me that's what comes back first they are they are beautiful right a field of wildflowers is far more beautiful than a a a manicured garden a formal garden somewhere they are tenacious they are hardy they are resilient and that was the birth of the analogy okay as I kept writing the book I I came up with a couple ways that I could you know talk about them but one of my previewers uh a doctor out of Vietnam actually okay said you know you have so many great metaphors in your book you know telling truths through other things that people can relate to you so many wonderful metaphors in your book but there's just too many can you come up with you know just a couple things that you you know use thematically and I chose you know narrowing it down to two one is the battery and I have to use that because it's one of the dimensions okay yeah that makes sense right yeah but the other was the wildflower because so many people by that time you know I'd toss it out on social media and people are like oh yeah I love that because it it may it brings a beautiful way of seeing what for so long we have been judged as damaged goods. Right. It allows us to see the beautiful side yeah of living with these effects and it's um and I a lot of people have said it's it's FASD is our superpower. Well it's great to try and flip the script to something positive but a lot of people are like I don't know if I go that far right wild flowers is something we can all get behind. Right and it's not that we're flowers we're much more complicated than a flower.

SPEAKER_01 57:46

However we are we're stubborn that's something that is often said for us right you know we have to be we have to for separation but the flip side of that this the opposite side of the same coin is tenacious we see things through we do we have to we have a stick to itness that we that yeah absolutely we have to people say that to me all the time how do you continue to do all that you're doing and when I think of the wildflower analysis that you have I mean it just makes me think of resilience. You know it's that picture of the one little flower coming through the cracks in the pavement you know I mean that is in a nutshell who we are this is the end of part

Part One Closing And Part Two

SPEAKER_01 58:33

one. We've only scratched the surface of what Patty Casper shares in her incredible book 4D Living with FASD shared voices clear understanding and I want you to understand something. When you're raising three kids with FASD you spend so much time trying to figure out how to help them succeed. And sometimes no matter how hard you try you feel like you're getting it wrong. Patty Casper's book 4D Living with FASD made me stop and look at my children differently not at what they couldn't do but what I wasn't understanding. And that changes everything. Next week Patty returns for part two and we're going even deeper because behind every struggle is a person who deserves to be understood. And sometimes understanding is where everything begins to change. Don't miss part two of Real Talk Latina and Anne next week.