Understanding Changes Everything: FASD is More than a Brain Based Disability with Patti Kasper and host Ann Kagarise

Part Two And What Changes Today

SPEAKER_01 0:22

This is part two with Patty Casper. You can't miss it. We go beyond the behaviors to uncover the hidden challenges of FESD and how understanding the brain, body, and individual needs can change lives. This is

Why The Wildflower Brain Fits

SPEAKER_01 0:36

part two. 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 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 at the time, okay, but what is a wildflower brain? So now I know because in your book you talk about flowers. That wait for the right conditions and even flowers that grow after a fire. So what made you want to grab that imagery to represent us?

SPEAKER_00 1:46

So yeah, this is this is another journey, something that has evolved over the course of writing the book.

SPEAKER_02 1:51

Yeah, okay.

SPEAKER_00 1:52

Think about alcohol has been called fire water. Sorry, it's been called fire water, right? Okay. Alcohol, fire water.

SPEAKER_02 1:59

Okay, yeah.

SPEAKER_00 2:01

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. What do you see after a wildflower or wild fire, right? What's the first thing to come back? The wild flowers.

SPEAKER_01 2:16

Okay, I did I didn't even know that. So that's interesting to me.

SPEAKER_00 2:20

That's what comes back first. They are they are beautiful, right? A field of wildflowers is far more beautiful than a manicured garden, a formal garden somewhere. They are tenacious, they are hardy, they are resilient. And that was the birth of the analogy.

SPEAKER_02 2:39

Okay.

SPEAKER_00 2:40

As I kept writing the book, I I came up with a couple ways that I could, you know, talk about them 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 of living with these effects. 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.

SPEAKER_03 3:14

Right.

SPEAKER_00 3:15

Wild flowers is something we can all get behind.

SPEAKER_03 3:18

Right.

SPEAKER_00 3:19

And it's not that we're flowers, we're much more complicated than a flower. However, we are we are stubborn. That's something that is often said for us, right? You know, we have to be 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 have a stick to itness that we that, yeah, absolutely we have to.

SPEAKER_01 3:46

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. I think it's perfect.

SPEAKER_00 4:10

And there's there's different wildflowers in different environments, right? Um, you've mentioned a couple of times about just needing the right water, right? So that that came from Death Valley, living living in Bakersfield. I wasn't that far away from Death Valley, right? It's a five-hour drive. If you've ever, you know, Death Valley is the hottest location in the Western Hemisphere. I've been there. I have been there. I mean, it's it's roasting. It is roasting. But if you go in the springtime after they've had the right amount of rainfall, it is awash with flowers. It's they they call it a superbloom where it's like all of a sudden, overnight, boom, they're everywhere. The whole valley floor is covered with flowers.

SPEAKER_02 5:02

Yeah.

SPEAKER_00 5:02

It and you know, how do they survive in that kind of heat where nothing lives? Right. It takes the right environmental circumstance. Oh, it does. There they are. But think about that in terms of our background, right? Look at look at your background, Anne. You are a product of something terrible, and yet you are beautiful. Yeah, I believe it. We we are oftentimes brought up in environments where families are really struggling, right? Whether it's poverty, whether it's addictions, whether it's being raised in the system because our families were so dysfunctional. No, those are harsh environments. Right. And yet we can thrive.

SPEAKER_01 5:51

Right. I think it's beautiful. Yes.

SPEAKER_00 5:53

You know, all the trauma you said your mom had to cope with.

SPEAKER_01 5:57

Yeah.

SPEAKER_00 5:57

And yet you are thriving.

SPEAKER_01 5:59

Right. Well, I was adopted out of that family, and that was another traumatic thing. But yeah, I mean, I think we were born knowing or feeling or instinctually knowing that if we're going to make it, we have to become resilient and we have to push through no matter what. And we had to do that from day one. Were you were you diagnosed failure to thrive? I'm just wondering.

SPEAKER_00 6:23

No, I never had that diagnosis. However, um, you know, like I said earlier, I I feeding me was very, very difficult. I kept falling asleep. Right.

SPEAKER_01 6:34

Right. I'm that's kind of funny. Yeah, it is.

SPEAKER_00 6:37

I was I was always um the smallest kid in our it was me and Carolyn. One or the other of us was always the shortest kid in school. So now, of course, I'm wondering if she was also alcohol exposed. We were always teeny tiny. Yeah. Um, but I was never, you know, I was it wasn't failure to thrive, but it was probably not a lot better

Prenatal Alcohol Exposure And Health

SPEAKER_00 7:03

than that. In my case, I am convinced that the alcohol exposure is why I have type one diabetes. Um usually people point to, you know, mom being ill or the baby being ill, and you know, the very early month, no, none of that. Um, but if you think about the biology, all there's five systems that control um insulin signaling, which is parts of the body sending messages to the pancreas saying, How about it? We need some insulin, make some, right? And then the pancreas making it, right, producing it. There's five, five structures involved in that process, and um, they all come on board in the first month. Wow. Of pregnancy. And if you don't know you're pregnant and you're drinking, right, right, right. Then, you know, and and it has that been scientifically proven? No, probably no one's even looking at it.

SPEAKER_02 7:59

Yeah, I doubt it.

SPEAKER_00 8:00

But it's a theory that makes sense, at least in my case, right? Is it all cases? No, but um, but think of the potential, you know, uh FASD cases are rising, type one diabetes cases are rising. Hmm, I wonder.

SPEAKER_01 8:15

It could, there could be a connection for sure.

Masking And The Hidden Energy Cost

SPEAKER_01 8:18

Uh, I want to just talk about something. Um, you know, we we talk about success and us blooming even in the hardest of situations, but you know, what's really difficult is that I have two. And, you know, people have to understand that we have to meet each of us where we are. And I think, you know, you really like your neuroprint. I mean, that is just so genius because I have three with FASD, and I'm not going to treat the one like the other, like the other, just with autism or anything that's a spectrum. Um, you just don't treat them the same. You have to know them so well. And my one with fetal alcohol, um, it's really kind of sad because she is just struggling so much. And she said to me, Mom, if you were in my brain, you would hate it. You would hate yourself. And, you know, it's just so heartbreaking because I want to meet her where she is. But she, like another big part of your book, you talk about masking, and it's so, you know, if I were to look at her, she's stoic, she's straight-faced, she's going through her day most of the time. And what she described to me in her head is nothing of what I'm seeing, you know. I mean, we do so well at going out and living, but we're not showing really what's going on in the inside. People don't see what's going on behind the curtain.

SPEAKER_00 9:52

You know, people see the behavior, but they don't see the toll that it takes on us. It's huge. Whether it's good behavior or bad, they see the outward display of us reacting with our environment. There's no way for them to see everything that's going on on the inside. Right. And the toll that it takes, you know, to um to go out to a social party. You know, you go home and collapse. Yeah, you pass out within minutes of getting home because you just there's nothing left in the tank.

SPEAKER_01 10:26

It's got to take a toll on who we are as individuals through the years. It has to.

SPEAKER_00 10:33

And that's part of, you know, we talked earlier about um IQ versus adaptive functioning, right? People think that because you have because you're smart, you should be able to function in the world, right? You should not need services because your intelligence is here, right? Even though the adaptive functioning is nowhere close to being able to take care of things, right? Um, but there's that that expectation. Yeah. And because we know that we are very often targeted for being different, we're going to spend a whole lot of our energy on trying to figure out how to appear normal. Right. It's a mask of normalcy. And the price tag on masking is humongous. There's nothing really that sucks our energy down faster than masking.

SPEAKER_02 11:27

Right.

SPEAKER_00 11:27

And that the beauty of getting together with other people who have the same type of neurodivergence you do, in our case, it's FASD, is that the mask can not be on.

SPEAKER_02 11:39

Yeah.

SPEAKER_00 11:40

We can interact without the mask, and it feels good. We know we're safe with each other. Right. I when I was a kid, diabetic camp, it was one week a year, and it was more important than Christmas morning. Because it was the only week out of the year I was normal.

SPEAKER_02 11:57

Right.

SPEAKER_00 11:58

And even there I wasn't fully accepted because you know, a neurodivergent, but I didn't know that then. Right. Right. But it was the closest that I had to acceptance.

SPEAKER_01 12:09

Right. Yeah, I love hanging with my people. I mean, it is really truly and the only other thing, you know, that ends up happening when you're people like you and me, and we, if we do get asked to a conference, or if we do go speak, or you know, recently I've had somebody ask me to be a part of a big project. And when those kind of things happen, we are thrown into the mix with typicals. And they have no idea why I'm saying, no, I really don't want to hug. No, I really can't figure out how to do that. We really need to break that, we need to slow down. My processing is really slow, you know, and it's like, oh, you know, and it's really interesting to watch that here because we're so successful in our neurodivergent space that it does take us into typical spaces, and we have to ask everybody to, you know, understand who we are.

SPEAKER_00 13:06

Yeah, and it it's it it will deplete our battery faster than anything else.

SPEAKER_01 13:10

It does. And I also wanted to touch on something about in your in your book, you talk about overlapping diagnoses in the scattered profile, and I have been diagnosed with FASD, autism, dyslexia, ADHD. I mean, I have it all.

SPEAKER_00 13:29

You've got the alphabet.

SPEAKER_01 13:31

I do. And I think what's really interesting is that I think all of it probably just falls under the umbrella of FASD. So I, you know, I don't know, but um, how do we But you could have you could have multiple things. It is that possible identify, yeah. Of course it is. Okay, because so many of the same things under autism are under FASD. And you know, and so it's kind of hard to sort.

SPEAKER_00 13:58

I mean if you think about, I mean, now we we have ASD, which is autism, we have ADHD, which is attention deficit hyperactivity disorder, right? And then you have AUDHD for that combination of the two, right? Right. I'm waiting for them to add an F at the beginning of that.

SPEAKER_01 14:17

Okay, all right.

SPEAKER_00 14:18

No, that would be great. Yeah, because I mean you we could it it's not an either or, it's a this and that.

SPEAKER_01 14:26

You know what? I'm so glad to hear you say that because uh sometimes you know I'm in both spaces and I always feel like I'm I need a pick.

SPEAKER_00 14:37

And I and I'm just like diabetic and arthritic.

SPEAKER_01 14:40

Okay, so we can be all of those things. I mean, it makes sense because when it affects the whole entire system, another thing that you talked about, we talked about it on your podcast, and I have thought about it since. You and I both have eye problems, neurological eye problems that I had never attributed to FASD until I talked to you, but I have no depth perception, I have no my eyes don't converge, and it is not in the eyes. My problems are not in the eyes. I've had neurodevelopment or neuroophthalmologists look at my eyes, and it is in the brain what is going on. So, I mean, is how do you look at that? Is it is there something that's going on

Vision Wiring That Mimics ADHD

SPEAKER_01 15:29

there?

SPEAKER_00 15:29

Um one very common uh effect of prenatal alcohol exposure is cortical visual impairment. And yeah, it's it's about that wiring in the visual system um that makes it difficult for the eyes to work together and to focus. Um and when, and this is why we get a lot of kids diagnosed with ADHD who don't respond to meds because they don't really have ADHD. Their eyes don't work together, and so they're constant, and it's a lot of work to try and read, whether it's on your desk or on the board. You know, it it's it's exhausting and it's distracting. And so these kids end up, you know, doing a lot of ADHD-like behaviors, whether it's the fidgeting or the sh not being able to sit still or needing to look around to give their eyes a few moments of a break.

SPEAKER_02 16:25

Yeah.

SPEAKER_00 16:26

Right? All those pieces that look like ADHD, but it's neurological with a vision system. Um it makes sense.

SPEAKER_02 16:34

My go ahead. Sorry.

SPEAKER_00 16:35

That's okay. You know, part of what I have going on is when I when I was a kid, I had what was called strabismus, right? My eyes wandered, especially this one. Um when I'm tired, this eye still goes that away. Um, because of because of the diabetes, I've had a lot of laser treatment done, you know, because um, speaking of detours, sugar clogs up capillaries the same way that fats clog up arteries. So where are there a any any part of your body that is capillary rich takes it from chronic high sugar, right?

SPEAKER_02 17:16

Okay, okay.

SPEAKER_00 17:16

Um, where do you have a lot of capillaries? In your eyes, oh which is why blindness is so prevalent with diabetics.

SPEAKER_02 17:24

Okay.

SPEAKER_00 17:25

Your kidneys, which is why there's so much dialysis and kidney failure with diabetes, and your feet. There's so many amputations because the circulation is bad because the capillaries um are all clogged up. Right. So when your eyes start clogging up, then your body will build detours and will build new vessels, new capillaries. Yeah, but the walls are weak, they tend to leak. So you need laser surgery to burn the new growth so that you don't have any hemorrhages. Um, back in the 80s, I had my first treatment. They don't do things now the way they did then, thank God. My doctor back then, I've called him Rambo for so long, I don't know what his name is.

SPEAKER_01 18:15

Oh my gosh, that's funny.

SPEAKER_00 18:18

Right? But it totally took out my peripheral vision. Oh no. Still, still oh my okay. And because these eyes see so differently, it does not take much of an energy drawdown before my brain shuts this eye off completely.

SPEAKER_01 18:37

Well, my left eye shuts off all the time, it just shuts off, and that's whether or not it turns doesn't matter.

SPEAKER_00 18:43

It's just dead in the water.

SPEAKER_01 18:45

My you can see it in pictures. My left eye is a little further in, but you can see it in pictures more than in person. Yeah, yeah. My my brain, especially when I'm really tired, it gets worse. Yeah, and and I also get very dizzy, but I wouldn't say dizzy, that's not the right word. I lose my balance in certain spatial situations where it's like really open, or like there's a lot of movement, or like people are getting really close to me and talking to me, expecting all of the sensory things to kick in. And the thing that I lose is my balance. So I find that interesting because it is a whole body thing, it's a whole body thing, it affects every part. All of us are whole body beings, we really are, yeah.

SPEAKER_00 19:32

And a lot of people will will say that without understanding what it is that they're saying,

Interoception Pain Temperature And Safety

SPEAKER_00 19:39

right? Right, you know, it was curious. Yesterday I took my mom to um the nail salon. I was talking to one of um on my show. I've had Antonia Rathbun Lindsay on my show often. She's um from the early days, she's an FASD pioneer. Um therapist, just brilliant, brilliant and kind woman. Um, I was talking to her this morning about taking my mom to the salon yesterday. And I noticed, you know, you know, a hammer toe when you're when you're you're usually it's a big toe, just goes like this, right? Knuckle under.

SPEAKER_02 20:15

Right.

SPEAKER_00 20:15

Her four smaller toes are all knuckled under and her big toes curl up toward the ceiling. I'm like, oh I had never noticed that before. And she goes, that's not logical, huh? Is the damage from the dementia? I'm like, wow, you know, we are all whole body beings.

SPEAKER_01 20:32

And you talk about 428 health conditions that are associated with prenatal alcohol exposure. I mean, I find that really interesting too.

SPEAKER_00 20:43

We're finding even more now.

SPEAKER_01 20:44

Are you serious? More and more. Oh my gosh. And you know, another part that I found interesting with myself is pain. I have a pain tolerance like nothing else, like nobody I know. And I like I broke my pinky, clear, like broke completely off my hand. It was just like over here, and I just went, Oh, I think I broke my finger. And the doctor had to literally pull it and put it back on to cast it. And they're like, Well, did that hurt? Maybe, you know, and I broke my nose.

SPEAKER_00 21:21

Did you end up feeling it later?

SPEAKER_01 21:23

I mean, I would say that hurt down the room. I guess it did hurt some, but never to the extent that I think other people feel. Never.

SPEAKER_00 21:33

And and you know, that's the odd thing, and this is part of what has to be documented on the neuroprint passport because the way we experience pain is so different.

SPEAKER_02 21:43

Yes.

SPEAKER_00 21:43

From from other people. And that's part of that interoception nervous uh sensory system I was talking about.

SPEAKER_02 21:50

Yes.

SPEAKER_00 21:51

Um, it is not uncommon for us to have a pain tolerance that's sky high, right? Right. I broke my arm way up in the socket and nobody believed me because I wasn't a scre you know, I was in high school and I wasn't a screaming, crying mess.

SPEAKER_02 22:10

Right, right.

SPEAKER_00 22:10

But and yet I knew. And so I talked finally some would not shut up about it until I was sent for x-rays. And sure enough, there was a hairline fracture way up inside the socket. See? And no one believed me. When in in dance class, um, our our school, you could take modern dance instead of regular gym, which yeah, I'm all about music. I love, you know, I was all in. I landed from a leap wrong, collapsed onto the floor, picked myself up, and kept dancing. Did I feel the pain? No. Did it register with my body? Yes, because my face told on me.

SPEAKER_02 22:50

Okay.

SPEAKER_00 22:51

Even though I didn't feel it.

SPEAKER_02 22:52

Yeah.

SPEAKER_00 22:53

And so there again, the teacher said, You are getting an x-ray.

SPEAKER_01 22:57

That's interesting because I was weight lifting and um I had exhausted my ability to do another set or another, even one more. And uh my trainer was behind me. Um I have no idea why he didn't have his hands under the bar, but I kept telling him I can't do one more, and he kept trying to push me, and a hundred pounds landed on my face. Oh yes, I got up, it landed right here. I was very fortunate that I didn't die because my entire nose bone up there shattered and it went like this. And I I had to have five surgeries. But interesting, the only reason I knew something was wrong with me was because I went into shock. I got up, went into the bathroom, threw up, and then I came out and I said, Okay, I'm I'm ready to go home now. And you know, I'm like, they're like, Are you sure? And I'm like, Yeah, I'm fine. Went home, didn't even realize that my teeth had been pushed back. Um, and I went to swim practice because I was a coach, and one of my kids who I coached, the doctor was a doctor, a a face doctor, maxophilial, whatever it is. What are the odds? And he comes over to me and he goes, What happened to you? He said, I think you need to see me. And I said, Why? And he goes, Because you broke your nose. And I went, Oh, well, yeah, it did fall on my face.

SPEAKER_00 24:27

And so, yeah, five surgeries later, but in that crazy, I mean, I you know, there when um when when I was taking the the training from facets, one of my peers in the class um also lived in California. So we we did some things together, but she talked about her her daughter um who has FASD. They had gone out to the hen house and her daughter, I don't know what she was doing, but her daughter was collecting eggs and fell. And she heard her daughter screaming, Mom, I broke my arm. I mean, she she just announced it, right? She wasn't crying, she didn't scream in pain. She said, Mom, you know, just loud enough to be heard from the the other room. I broke my arm. She didn't believe her until she walked over and saw. I mean, there was bone protruding from her from her arm. Oh my. And it was just calmly. And but it's not just pain. The other thing that our interoception will tell us about is warmth and cold. How are we hot? You know, how many people overheat without realizing?

SPEAKER_02 25:37

Yeah.

SPEAKER_00 25:37

Are we cold?

SPEAKER_02 25:38

Right.

SPEAKER_00 25:39

Right? How many kids lose their jackets?

SPEAKER_02 25:43

Right.

SPEAKER_00 25:43

They go to school wearing a winter jacket, they come home without oh, yeah.

SPEAKER_01 25:48

That happens.

SPEAKER_00 25:49

It happens all the time. I used to hear this complaint every single winter from every family on my caseload. Yeah. How many jackets am I supposed to buy for this kid? Right. Jackets are expensive, and it's because there's no perception of cold.

SPEAKER_02 26:08

Right.

SPEAKER_00 26:08

And I used to do that as a kid. You know, my mom worked, so I left the house after she did, even in third grade.

SPEAKER_02 26:16

Okay.

SPEAKER_00 26:17

I'd be, you know, I had to walk to school. Our community was five miles by five miles. There were no school buses.

SPEAKER_02 26:24

Yeah.

SPEAKER_00 26:24

We walked. Unless we were on a sports team going to a competition, we walked.

SPEAKER_02 26:30

Right.

SPEAKER_00 26:31

And I would walk to school, snow and ice everywhere, wearing a knit cape and be fine.

SPEAKER_02 26:37

Yeah.

SPEAKER_00 26:38

Was I in danger from that? Yeah.

SPEAKER_01 26:42

Right. And that's why, you know, like with my kids, I have to watch to make sure that they're making choices that isn't going to hurt them because they really are not going to do it on their own. I want to talk about, you're talking about kids, only a couple more things and then we'll wrap.

School Gaslighting And The Behavior Myth

SPEAKER_01 26:58

But one, yeah, I know. But there's a thing that you write about institutional educational gaslighting. And I found, you know, I mean, I could do a whole episode on that really. Um, and what is that? And how do we keep schools from treating a child's survival response like deliberate misbehavior?

SPEAKER_00 27:19

Um, this all comes down to what's called a behavior paradigm, right? Something is a paradigm when it is universally believed, right? So broadly held truth that nobody questions or not whether it is true. Right. Right. We used to have a belief that the world was flat.

SPEAKER_01 27:39

See, that's good.

SPEAKER_00 27:41

There is hope for all the people that believe behavior is always a matter of intention or choice. And the hope is found in the fact that we now accept that the world is round.

SPEAKER_01 27:53

You know, I went to a reunion. I don't know if I told you this on your podcast, but I went to a reunion where um, you know, it's decades later. And I had a crush on my seventh grade teacher. And there he was, he was standing in front of me, and I was just so excited to see him. And I went up and I was like, Oh, hi. And he's like, Oh, yeah, you had a lot of problems. And I just went, okay, I'll see you later. Because I was like, if that's what you remember about me, and yes, I did have a lot of problems, but how about we maybe see the successful adult that I have become instead of lead with, and that told me something about the education system, in that, you know, lots of times what they see is maybe the diagnosis. What they see is the behavior. What they see are all these things, and that is what sticks with them versus how hard we're working to succeed.

SPEAKER_00 28:56

Yeah, there's there's a there's so many factors that play into this, and one is the fact that there is the behavior paradigm, meaning nobody questions the belief that behavior is chosen. That's intentional, right? If you do something, it's because you've chosen to. And if someone cannot figure out why you would want to do it, then there must be a secondary gain. You're acting like a schmuck because somehow there's a payoff.

SPEAKER_01 29:24

But when you know a kid that with everything in them wants to be different and they aren't able, no matter what they're doing, they continually find themselves in the same situation and they don't want to. Why why would anybody, especially a child, want to say, I want to be the worst one in the room? I just want to be.

SPEAKER_00 29:49

Yeah, I don't know. I want to get all the attention I can. I don't care if it's negative. Yeah. No, kids, kids will always do the best they can if they're able to. All of us will do the best we can if we're able to. We just might not be able to for whatever reason. Maybe our battery is depleted, maybe the environment is screwed up, right? Maybe you know, there there's kids who do not who keep doing bad things, kids who don't learn from their mistakes. It's because that we we talked about neural circuits that that link between cause and effect is broken. Yeah, the link to enable someone to learn from previous times is not working, right? So it's not, yeah. I enjoyed getting in trouble so much I want to do it again.

SPEAKER_01 30:40

Right. It was just so fun.

SPEAKER_00 30:42

Give me a break.

SPEAKER_01 30:43

But so then we sit down at IEP meetings, and the measuring is completely skewed. I mean, what should we be measuring beyond grades and behavior and how do we write plans that support the child's brain rather than just reward compliance?

SPEAKER_00 31:03

It's working to change society's perception that behavior is always chosen. Right. Behavior oftentimes is reflexive. You know, think about being in the woods and you hear a branch behind you snap. There's no other people. What happens? All of a sudden, your everything about you prepares for fight or flight. Sure. Right? That's a reflex. There's no opportunity to think about anything. It happens that fast. A lot of times, that's what our behavior is. It's those reflexes.

SPEAKER_01 31:42

And when you live in fight or flight all the time, exactly.

SPEAKER_00 31:45

Because we're always picked on, we're always all microaggressions day in and day out. We're we're always scoping to make sure that we're safe.

SPEAKER_01 31:56

I lived in hypervigilance all of my life.

SPEAKER_00 31:58

Yeah, and part of that was because your mom did. Sure.

SPEAKER_01 32:02

Yeah. True.

SPEAKER_02 32:03

Yeah.

SPEAKER_00 32:03

Your your your thermostat for your sympathetic and parasympathetic nervous system got broken and got set on sympathetic. Okay, that's interesting. Stuck on sympathetic.

SPEAKER_02 32:16

Okay, all right.

SPEAKER_00 32:17

That's a little over overly simplified, but basically that's that's it in a nutshell.

SPEAKER_01 32:22

You you talk about um just a couple more things, I promise. You talk about I'm yours. You talk about Deb Evanson and Jody Colt's 13 beams of moonlight. They're such big ideas there. And how could a teacher use them? What would it look like to say work differently instead of try harder?

SPEAKER_00 32:45

Um, that that is a it's a wonderful phrase. Trying differently rather than harder. That I mean, that comes out of the neurobehavioral um model. Right. And it's basically there's there's a saying that uh insanity, the definition of insanity is doing the same thing over and over and over again.

SPEAKER_02 33:04

Yeah, right.

SPEAKER_00 33:04

When it doesn't work out and you still keep doing it, that's insane. Right. As if it's a choice. Right. Yeah. But we are so used to assuming that behavior is chosen that we just can't see it being differently than that.

SPEAKER_02 33:20

Right.

SPEAKER_00 33:21

And it takes practice and it takes work to have that self-talk as a teacher in a classroom, to have that self-talk going on about, you know, when you're watching one kid out of 30 melting down, it's much easier to say what is their problem. And that's faster and easier to deal with than what is their, what's the problem they are having in the advice? What's keeping them, what's blocking them from being able to be calm or be attentive or be quiet or you know, all these things.

SPEAKER_01 33:57

Right. Yeah, I mean, I want every educator listening to hear this because a child can even explain a rule and still struggle to follow it. You know, and they and when they're overwhelmed, especially they can even demonstrate a skill like we talked about and still need help being able to access it the next day. I mean, these are things that people would say, oh, you're just lying. But it is absolutely true.

SPEAKER_00 34:29

It's it's not a matter of whether a skill is there, it's can I access that skill for the moment?

SPEAKER_01 34:37

Right.

SPEAKER_00 34:37

That's not always there.

SPEAKER_01 34:38

Right, yeah. My mom was actually in the hospital at one point, really doing very badly, and they decided to do the check on her. You know, the you they ask questions, they're like this, this, and this, and you have to answer back to see if you're neurologically okay. And I was listening to all of the questions and I went, oh gee, probably couldn't have answered those myself. And that's because they don't even understand that what's your starting point.

SPEAKER_00 35:07

They don't they think that, yeah, go ahead. We're circling back to what we said earlier. You know, people expect that your performance at any single point in time is your baseline.

SPEAKER_01 35:20

Yes, yeah, it's just not.

SPEAKER_00 35:22

It might be your peak, it might be that random, you know, flash of brilliance. Yeah, nowhere close to a baseline.

SPEAKER_01 35:30

Right. Yeah.

SPEAKER_00 35:30

I think that hospitals or it might be your baseline, but if you're too emotionally or intellectually tired, sure, you're still not gonna have the capacity to get there.

SPEAKER_01 35:40

Yeah, yeah, they do need to know more about that, though. I think the hospitals need to get on board and just say, if you can't answer these questions, then you know they don't know what your baseline is, so they shouldn't do that to begin with.

SPEAKER_00 35:51

If you don't have gas in your car, your car's not gonna get you anywhere.

SPEAKER_01 35:56

Right. Yeah. Okay, one last section for today.

Petal Closure When The Brain Shuts Down

SPEAKER_01 36:00

What this next part of your book really made me think because you describe a flower closing its petals when the conditions become too much. So you call it petal closure. What does that look like in a person? And how is it different from simply refusing to do so?

SPEAKER_00 36:21

You provided an example of that already, Ann. You said, When I'm tired, my eye shuts down.

SPEAKER_01 36:26

Okay, so that's an example.

SPEAKER_00 36:28

That's an example.

SPEAKER_01 36:29

Okay.

SPEAKER_00 36:30

I brought up earlier if we're in the woods and we hear a noise that we can't, you know, identify, there's a source for that. Uh, we we start to have that chain reaction that's fight or flight.

SPEAKER_02 36:42

Yeah.

SPEAKER_00 36:42

So when we are in crisis, everything narrows down. We become very tunnel-focused on survival. All the other stuff goes away. The ability to really proud problem solve and rationalize our way, we lose access to that. We lose access to our language center, we lose access to our memory banks, we lose access to be able to cognitively think things through because we're operating out of our survival mechanisms in the brain. It's much deeper in the brain.

Confabulation Suggestibility And Authority

SPEAKER_01 37:15

There's another part of this that has really affected our family recently, and that's confabulation. Um, and it really, you know, especially with kids, this makes me upset because if a kid finds himself in a really bad situation, and my I know that my son can tell the same story 10 different times, but it doesn't mean that he's deliberately lying. And it's to get police or to get teachers or other people to understand that there is gaps in the and they're just trying to fill in that gap. Am I explaining confabulation correctly?

SPEAKER_00 37:54

So, so confabulation is a matter of it it's a memory issue. Okay, more than anything. Now, when we are stressed, we lose access to our memory banks, and and that's with everybody. That's why when there's an accident or something goes horribly wrong, like at the New York marathon years ago, right? Okay, right, disaster happens. How many witnesses do the cops talk to? As many as they can find. Why? Because everybody's account will be different, and the truth is in the midst of all of that.

SPEAKER_01 38:29

Okay, okay, I mean that makes sense.

SPEAKER_00 38:32

Because everybody memory is fallible, the way we remember things is not necessarily the way things happened, and memory over time.

SPEAKER_01 38:41

So then, how can this was this has been interesting to me? So, how can authority people asking a child who has found themselves in trouble, how can they ask them without putting words in their mouth and getting them to say yes to things that didn't even happen?

SPEAKER_00 39:00

Police are not the only ones that can really confuse someone with FASD or some other neurodivergence or someone who's challenged intellectually, um, you know, leading questions. Yes. Leading questions. And police are allowed to lie, yeah, which is shameful, but it's true, you know, because they want to trick people into disclosing what it is they'd rather hide so they don't get into trouble.

SPEAKER_01 39:29

See, but people that are neurodivergent, people that are neurodivergent, and when that's happening, sometimes when, like you're saying, when we're under stress, we could agree to something that isn't even true. Exactly.

SPEAKER_00 39:40

We have a number of effects of prenatal alcohol exposure, is that we are highly suggestible, we are very gullible, we have memory, we have more memory access issues than most people. But we also have a much stronger desire to please. And that is in part a response to all the microaggressions that we face.

SPEAKER_01 40:04

I have found myself in so many situations that I stayed in. We talked about this way, way earlier, but we stayed, I stayed in it, and it was abusive, it was hurtful. I was actually blamed as part of that I wanted to be a part of it and I didn't want to be a part of it. You know, I mean, that is why I am so protective over my kids, because especially as kids, I mean, we develop these tools as we go and we're older. And um, I hit my best self in my 50s. I really do believe that. I mean, all of a sudden my synapses started all working, and I was like, wow, this is what it's like.

SPEAKER_00 40:45

Um finally, it's that cognitive bloom, right? Unfortunately, the trade-off is our bodies are starting to go, you know.

SPEAKER_01 40:54

But my brain, I can just sit all day and let my brain do the work. Um, yeah, it's just really interesting because I was always halfway, you know, at least half my my age, always half my age. But now, you know, I really feel like my brain is flourishing a little bit more. Um, so I kind of find that fun. But for my kids, they are still in the midst of really making bad choices and and being very gullible and very, you know, not able to explain um what's really doing.

SPEAKER_00 41:25

The older we get, the bigger the bullies are and the bigger the consequences are.

SPEAKER_02 41:30

Right, right.

SPEAKER_00 41:31

You know, in grade school, we're often duped into doing something for the entertainment of the class bullies, yeah. Into um taking the heat for something that they really wanted to see happen, but they didn't want to get in trouble, so they, you know, dupe the kid with FASD into doing it and then enjoy it.

SPEAKER_01 41:50

That's see, you put that in your book. I'll take, you know, I I talked to my son about this. I gave him scenarios and I kind of made something up, just kind of going from your book. And I wanted to see what he would say. And I said, Well, say that you know, you and your friends are downtown and one and they say, Oh, go steal that, and then you do, and then they go run, and you're just left standing there with it, and you're the one in trouble. And he said, Well, I wouldn't be in trouble at all because they told me to do it. I only did it because they told me to. And I said, No, you would have been the one in trouble because you did it. They ran, they left you there by yourself. You know, he ended up getting all of my scenarios wrong. And I said, No, you're never leaving the house because you can't you can't answer one of these right.

SPEAKER_00 42:43

Yeah, there's um, I I could I could give you so many examples, you know. I I just I myself have been used because I, you know, it there's such um there's such shame when intellectually you should know better than to be used. Um but it yeah, and and the the consequ, I mean it could have been so much worse. I I really think God had his hand upon me and and kept me throughout. Um but there was there was a period of time, you know, and I and it wasn't when I was 20, you know, it was I was much older than that, and which makes it even more shaming. Um, you know, and and I even now I don't care to go into the specifics, right? But um, you know, it it's it's just hard. But confabulation is something that all of us do from time to time. Now, for your older audience members, they're gonna get this when I say, think of when you're watching a program as a family, right? And a commercial comes on before the days we had TiVo, when there's a commercial break, everyone's scattered for the bathroom or the kitchen for a bio break. And then Ran back to the living room to get there in time before the commercials ended.

SPEAKER_02 44:04

Yeah.

SPEAKER_00 44:04

But if you didn't make it back in time, then your brain worked over time to fill in the blanks about what you missed. That's really good. Okay. And you're piecing it together. You can use the facts that are available. You knew what happened before the commercial break.

SPEAKER_02 44:21

Yeah.

SPEAKER_00 44:22

And you kind of can guess where things are going and you fill in those blanks. That's confabulation. I guess the closer you are to the truth, the more you believe it is truth, right? Of course that's what it is, maybe it isn't. And especially if someone asks you leading questions or suggests a scenario of this is the way it happened, because we are suggestible, because we are people pleasing, because we want the confrontation to end. Yeah, we will agree with all kinds of things. And also even if we know that it's not true, we will agree to it to make it to make the uncomfortableness go away. But eventually we will start saying it as if it is our truth. That's so interesting. Eric quotes around our truth. And that's confabulation. The difference is it's not an intent to deceive, it's an intent to fill in the blank spot. Nobody likes void, and the human mind is the same as the universe. Think of a black hole. The black holes are constantly filling themselves with stuff because nothing that black holes are not welcome in the physical universe or in our brain. And so we will, because we want to make someone happy and tell them what we think they want to hear, yeah, we will come up with an explanation that seems in the moment to make sense to us, you know, and it's like, well, what are you doing with that? I don't have it. It's in your hand. Oh, I don't know.

SPEAKER_01 45:57

And the other thing that I um wanted to add to that is that when you're a neurodivergent person who absolutely has, you know, all the neurodivergence is staring authorities in their face. And then you have somebody who's typical saying that you did it. They're gonna believe them over you. They just are, unfortunately. And that's another part of that. You know, I mean, that's that's really scary too. So that's another reason that, you know, you just and I want with my kids to build this tool belt with them for them before I really help can release them to the world um and trust the world with them. I want them to have all these tools uh because it's scary out there. And I want them to be able to survive and be strong. But FASD has robbed uh their brain of a

Trading Independence For Interdependence

SPEAKER_01 46:48

lot.

SPEAKER_00 46:48

So part of that, Ann, is forgetting about the idea of independence, prepare them for interdependence.

SPEAKER_01 46:55

See, I just got a phone call and an email from their principal because I'm keeping my son home right now because of some issues at school or whatever. And I just said, you know, I'm just gonna keep him home right now. And they sent me a list of things that they're doing for him to become more independent. And I went, Well, that's not the direction we're heading. So this does not feed feed our needs right now. I'm sorry, this doesn't fit where we're going.

SPEAKER_00 47:18

So we we have a different timeline than neurotypical people, yes, right? Yes, our society wants people to be adult at 18 or 21, right? We know that most neurotypical people truly become adultish. We re give where we give them the respect of an adult when they're between 25 and 30. Right, where when they can reliably make good judgments and be self-sufficient, right?

SPEAKER_01 47:46

When the frontal lobe has has, you know, kind of content.

SPEAKER_00 47:51

When most people achieve that. Well, for us, it's about a decade later before that begins to come. And really, you said my mid-50s is when I had that bloom. Yes, right, for sure. We're on a different timeline. I mean, think about a big airport. You know, you're you you you live in northern Ohio, right? So what's there? Cleveland airport's a big airport, yeah. In the concourse there, there's the regular concrete sidewalk, right? And then there's the people mover, which is like an escalator, except it's flat, right? Right, yeah, gets you there much faster. So for those of us with neurodivergence, especially with FASD, our bodies are on that people mover, but intellectually, emotionally, we're hoofing it. Yeah, we're not gonna get there as fast. I think I'm gonna use this. Sorry, but but the administrators at the school are saying we want you to be independent by the time you graduate at 18. It's not gonna happen. Not when developmentally you're nine.

SPEAKER_01 48:54

See, I'm going to use interdependence and what you're saying in the email back to them. I'm going to. And it I did tell them already that it doesn't meet our needs right now in the direction that we're going with him.

SPEAKER_00 49:08

And then the copy of the book.

SPEAKER_01 49:11

Well, I am. I I am telling them about it. You know, I told the doctor who wrote this amazing, beautiful letter for my uh son to the school in what he needs. And I'm just going to have to reiterate basically what she's saying. I'm gonna have to come back with them with the word interdependence because I really love that. I love it.

SPEAKER_00 49:32

And and everybody needs, I mean, we're all different. All of us have that, we have our own noroprint. And with that noroprint comes the tailored combination of supports that we need through life. Right, right. Right. And let's bring D4 into it. Those needs change over time. Right. We hear so much about how Canada is much more advanced compared to the US when it comes to FASD.

SPEAKER_02 49:57

Yeah.

SPEAKER_00 49:58

Um, and in many ways they are. They have school districts just for FASD. Oh my gosh. Right. But you know what happens in those schools? When they reach a certain point, they get transitioned out back to Gen Ed. Oh and then all of a sudden the kids are flailing again and dropping out. Well, they met their goals, so they don't need the support. No, their needs changed over time, they need different support.

SPEAKER_01 50:25

I just had a neuropsychology appointment, which I got all the same diagnoses again. But um, we were something in there about, you know, as an adult or whatever, and I said to my friend, Well, yeah, I mean, you know that as soon as I turned 18, all of this just went away. Because that's what they think, you know. I mean, it's just it it continues over time. I mean, this all stays with us, it evolves, it changes even in the day. I mean, kind of like everything that we've been saying here today.

SPEAKER_00 50:58

I was talking with a friend of mine from Bakersfield, and they had a new staff member come on the team for their kid. And he said, Oh, well, they'll grow out of that. No, no, they won't. You know, and that kind of is change, their needs will change over time. Yeah. But if you use a workaround long enough and consistently enough, it does become habit, right?

SPEAKER_02 51:22

Yeah, right.

SPEAKER_00 51:23

Um it's still an accommodation, but because it because it's so well practiced, it doesn't draw the battery down as much.

SPEAKER_01 51:32

Well, see, my workarounds got they said I wouldn't graduate high school. My workarounds got me a master's degree, which led me to a platform like this where I'm able to do this. So I mean, you really, and I believe this, we can work our brains. It's just like a muscle, you know, you can strengthen it and strengthen it and learn the scripts and learn the skills and learn everything that you can to, you know, take it to the next level and continue on. I really do believe that. Well, we could wrap here and then pick this up, like, you know, at another time because I think Patty and I could talk forever. Um, but we could Patty, I can't thank you enough for writing 4D Living with FASD, shared voices, clear understanding. Your book has genuinely changed the way I understand FASD, the way I parent, and even the way I understand myself. And I think that the biggest takeaways today is that we need to stop asking why someone won't do something and start understanding why they may not be able to.

SPEAKER_00 52:36

So what has them stuck right? So shameless, um, shameless promotion

Study Guide Games And Where To Find

SPEAKER_00 52:43

here. I am hopefully within the next two, two to three weeks going to publish the companion study guide that comes with it. It's called Discover Your Life, your 4D life. Awesome. Basically, along with the neuroprint passport comes the 4D matrix map, which is how you break down specific examples, break down specific situations with D1, D2, D3, D4.

SPEAKER_02 53:06

Okay.

SPEAKER_00 53:07

In order to identify the most effective um workaround. Okay. So the workbook, the study guide, gives people practice by taking examples from the book and showing how you would fill out the matrix map. And and every every chapter in the study guide goes with the chapter in the book. And so by the time you get to the end, you've done 60 of these and should be more comfortable um being able to apply it in real time with your family or with yourself. Right. Um, so yeah, so that's coming out. Um, I also have an um interactive tool, which I developed after you and I last talked. And um, you know, we we learn best through play, right?

SPEAKER_02 53:55

Right.

SPEAKER_00 53:55

All right. So I love playing cards. So I created cards, they're playing cards instead of clubs and spades and hearts and diamonds. I have the fingerprint, which stands for the noro print, a battery, which is D2, a leaf, which is environment, D3, and a clock, which is time, D4.

SPEAKER_01 54:16

And oh, I love it.

SPEAKER_00 54:18

Yeah. And um also ace through king, every ace is the same regardless of which suit it is, right? Okay, in this case, the ace is sensory buzz and overload. Um, then the example, the humming lights in crowded rooms are quietly draining my bandwidth, right?

SPEAKER_02 54:39

Okay.

SPEAKER_00 54:39

Um, so that was an example from the NORO uh, well, the A but depending on the the challenge, right? The the each number of the you know, Ace through King is a is a challenge that's harder and harder and harder, right? Or sucks down our, yeah. Okay. And um, so I've I've created, I've adapted 12 popular games that people already know how to play to be a way that you can reinforce these principles of the 4D framework. Okay. So all the way from kids' games like Go Fish to uh 500 or spade, right? So there's a whole the whole gamut there. And also um dice games. There's six dice games. So there's a version of Yahtzee. Okay, is also instructive because it's we learn more when we're having fun.

SPEAKER_01 55:32

Sure, yeah. It does.

SPEAKER_00 55:34

I mean that makes a lot of sense away, right?

SPEAKER_01 55:36

It does make a lot of sense, yeah. So where can people find your book and these games and learn more about your work?

SPEAKER_00 55:44

The games are not out yet. I um I have the card, the prototype of the card. I'm not happy with it. I've gotta um I've got I've gotta come up with the money to order of of different quality.

SPEAKER_02 55:56

Okay.

SPEAKER_00 55:57

But they they will be available uh by spring. Um, my website is one um way for the international eye, and I'm not gonna be able to ship outside the country and because it's just too expensive. But um, for anyone coming in for conferences, uh, if I'm at the conference, you'll be able to buy them there. Okay. Um I also have a clothing line coming out um that is built on the wildflowers.

SPEAKER_01 56:22

So I love it.

SPEAKER_00 56:23

A couple different uh there's eight product, uh two short sleeve shirts, two long sleeve t-shirts, a zip hoodie, a pullover hoodie, a tote bag, and a hat.

SPEAKER_02 56:34

Okay.

SPEAKER_00 56:34

Um and it's all for us girlies because most men aren't gonna want to wear flowers. But um it's just you know, and it's and that's not even FASD awareness raising because it this is more universal than just FASD. So anyway, um, so those those are those will be coming out. The um the apparel line just got formally approved yesterday. So um as soon as I finish rebuilding my website, people people will be able to order, um, order those. But your website is what? It's patriciacasper.com.

SPEAKER_02 57:14

Okay.

SPEAKER_00 57:14

And um I'm I'm and it's not my skill set. Building a website is so not my skill set. Um, so um as soon as I finish putting pieces together, then then I'll have that up and ready. In the meantime, um the books are available on Amazon.

SPEAKER_02 57:31

Yeah.

SPEAKER_00 57:31

And also another print on demand, which Amazon is print on demand, right? You order it, it gets printed. Um, books.buy is another platform like that. It gives its authors more of the royalties. Like I get seven or eight dollars instead of five.

SPEAKER_01 57:49

Okay. Well, that's good to know because people think authors get rich.

SPEAKER_00 57:52

No, we do not get rich.

SPEAKER_01 57:54

No, none of the things that we do from podcast or writing to anything. We are not rich.

SPEAKER_00 58:01

We are the apparel line. I'm gonna get five bucks.

SPEAKER_01 58:05

This is just because we love giving back, because we're turning pain into purpose. I mean, it's more about that than getting wealthy. Yeah, I really don't even as long as my bills are paid, I'm fine. I don't need to be wealthy.

SPEAKER_00 58:21

Yeah, but it's uh books dot buy, so b-y slash your F A S D coach. Oh, okay. All right or on Amazon, so under Patricia Casper and Books, and you'll you'll see the two books that I have available now. Sip by sip is also available large print, um, because because of the visual issues that we talked about earlier, um a lot of us struggle with words on a page dancing.

SPEAKER_01 58:45

Yes, and my eyes dance, like I go all over the place. I was like, yeah.

SPEAKER_00 58:50

Large large print is easier.

SPEAKER_01 58:52

Okay, all right.

SPEAKER_00 58:53

Um, however, it you know, it it costs a lot to get a book to market, and um, I think I've only sold one large print in a year, so um with 4D, it's almost large print. Okay. You need 16 print or bigger to be officially large print, and I went with 15.

SPEAKER_01 59:11

I didn't bring it, I didn't bring, I wish I would have had it in my hand, but it feels like a oh, I I have it, but I didn't bring it with me to into this room. I it feels like a college textbook or something. I just love the feel of it in my hands while I'm reading it. I don't know. I just feel like I'm in college or something.

SPEAKER_00 59:31

It looks like it looks like my background.

SPEAKER_01 59:34

Yep. All right, looks

Final Takeaways And Closing Words

SPEAKER_01 59:36

good. Well, I'm just gonna wrap. Thank you so much for joining us today, Patty, and for helping us see FASD differently, because I definitely do, and I'm sure our listeners will see it differently. And please get her book. We will have her on again, I promise. And to everyone listening, remember that there is purpose in the pain and there is hope in the journey. And we will see you next time.

SPEAKER_00 1:00:03

Thank you so much, Ann.