#40 "Navigating FASD: A Parent's and Teacher's Guide to Fetal Alcohol Spectrum Disorder" with Patty Kasper

#teenmindsredefinedpodcast #parentingteens #parentingadvice #FASDawareness #FetalAlcoholSyndrome #ParentingFASD #TeacherResources #HiddenDisability #ChildWelfare #Addiction #MentalHealth #TBRIpractitioner #CognitiveSkills #LanguageDevelopment #AbstractConcepts #Bullying #Consequences #Prevalence #FosterCare #PrenatalAlcoholExposure #BlameAndShame #Empowerment #ProfessionalDevelopmentTraining

In this episode of Teen Minds Redefined, host Cheryl Pankhurst delves into the topic of Fetal Alcohol Syndrome Disorder (FASD) with leading expert Patricia Casper. They discuss the hidden disability of FASD, its impact on children and families, and the challenges faced by individuals with FASD. Patricia shares her extensive experience in addictions, mental health, and child welfare, and provides valuable insights for parents and educators. From understanding the signs and symptoms of FASD to practical tips for supporting individuals with the condition, this episode offers a comprehensive look at FASD and its implications. Tune in to gain a deeper understanding of FASD and how to best support those affected by it.

 

 

00:15 - 00:54

Cheryl-Host: the mystery of FASD, What every parent raising a child with FASD or teacher needs to know. And today I have Patty Kasper.  I'm so excited to have her here. She's a leading expert in fetal alcohol syndrome disorder. She is a fellow podcaster with Living with FASD and an author of Sip by Sip. I want to hear all the things. Welcome, Patricia. Welcome to Teen Minds Redefined. And let's start with why. Why are you here? What are you doing? What's the point?

 

00:54 - 01:40

Patty - Guest: Right? Well, first of all, thank you so much for inviting me to your podcast. As much as, obviously, we podcasters, we like to talk. And as much fun as I have on my own podcast, I love being guest on other people's and just really spreading the word even more about this hidden disability that really is epidemic proportions. So who am I? In a nutshell, my career has spanned 30 years plus in addictions, in mental health, and most of it in child welfare since moving to California, their licensing laws are different than most of the country. So

 

01:40 - 02:25

Patty - Guest: I had to pivot and I'm so grateful looking back. Although I really, you know, for a long time, I preferred being a therapist when I lived back East. But I'm so grateful at this point, because it allowed me to find out the reason why I watch no matter what position I worked in, who I worked for, or even if it was for myself, some clients just didn't make it. Kids and families fall through the cracks and it's so painful for therapists and social workers. And eventually many people become very cynical about it. But it just, maybe

 

02:25 - 03:10

Patty - Guest: I have a tender heart, but it just broke my heart every time. And I discovered that, well, first I went down the path of trauma. It's got to be something trauma related. I became a TBRI practitioner, which is trust-based relational intervention, which is wonderful. But it wasn't enough. And then a friend of mine said, You know how I have all these challenges with my kiddos? And I'm like, Yeah, she goes, it's because of prenatal exposure to alcohol. So off I went down another bunny trail and learned as much as I could and eventually dove into a

 

03:10 - 03:59

Patty - Guest: year-long training program to become certified in helping people with a neurobehavioral model which is trying to flip people's script from behavior is intentional. It's always chosen. It's misbehavior. If you find the right motivation, Your child will event or your employee whoever it is will eventually make the choices you want them to make if you dangle the perfect carrot or threaten the perfect stick you know they'll make the right choice. Changing from that paradigm which is called the behavior paradigm to 1 of a brain based paradigm where behavior always reflects how well or how poorly the brain

 

03:59 - 05:00

Patty - Guest: is working in that moment. And realizing that alcohol prenatally, even if it's in small amounts, even if it's before a woman knows she's pregnant, causes brain damage. So we have a, we have generations of people walking around with head injuries, basically no car accident, Right? No car accident, no concussion syndrome, but brain injuries nonetheless. So it's not so much a matter of my child will not do whatever. It's for whatever reason, because of the way the brain got rewired, they can't without support. And so it really flips the switch and puts parents and professionals in touch

 

05:00 - 05:17

Patty - Guest: with their compassion and makes obnoxious behavior a lot less obnoxious, right? It allows people to give each other grace because we all need help with things from time to time. All of us.

 

05:18 - 06:09

Cheryl-Host: That resonates so much with me. I spent 25 years in the high school system working in special education. And behavior was always just a secondary piece of communication that told us that they just can't meet whatever expectation we're asking them to meet. It wasn't ever and still is never. Manipulation, push the buttons, get what I want, lazy. I strongly believe that and I love to hear people confirm it. Yeah. So let's dive into, you know, I was totally drawn to you because in my years with spec ed, I met, I worked with, we had 400 kids

 

06:09 - 06:25

Cheryl-Host: at any given time and IP and over a time span of 25 years. I met 3 kids diagnosed with FASD. Now, not that more didn't have.

 

06:25 - 06:26

Patty - Guest: I guarantee

 

06:27 - 07:12

Cheryl-Host: you. Yes, and All 3 had completely different profiles. And it's just, I was so interested and curious about these kids and what was happening with their brains and in their houses and you know there was and 2 of 3 had been adopted out of the children's aid system and so you know late diagnosis lots of different you know lots of different challenges and different visits to different doctors. But can you give us a baseline first?

 

07:12 - 08:09

Patty - Guest: What is FASD? Sure. So, Fatal alcohol spectrum disorder is actually not a diagnosis here in the United States. There are other countries have a little different protocol, which I actually prefer to the 1 here in the States. For instance, Canada, it's 1 diagnosis with 2 subtypes. It's fetal alcohol spectrum disorder with the sentinel facial features or without. Right? Yes. So people think of fetal alcohol syndrome, but here in the States, that's 1 of several diagnoses under the umbrella of FASD. Just like autism, it's a spectrum. And it's not a linear spectrum where you have high functioning

 

08:09 - 09:07

Patty - Guest: on 1 end and low functioning on the other. It's more of a 3 dimensional spectrum that every single person with FASD looks different is affected differently. Alcohol is a what first of all, it's a neurotoxin, right? It kills nerves. It is a solvent, chemically. It's a solvent. Well, what does solvents do? They dissolve lipids or fats. Every protective barrier in our body is made of lipids. So it goes anywhere in the body that it wants to. It's not limited. It's not protected by the blood brain barrier, for instance, just like it's not protected by the placenta.

 

09:09 - 09:59

Patty - Guest: And that makes alcohol actually more dangerous than your heroin, than your crack, than your methamphetamine because it goes everywhere. There's nothing to stop it. 1 of the other damaging things is, you know, when we think of an alcoholic, we think of fatty liver, right? Cirrhosis and automatically we think of liver damage and it does do that. But with babies that are still in the womb, number 1, they don't have a liver for a while. And even when that comes on, their infant liver, their prenatal livers, lack the enzyme that breaks down the alcohol, that metabolizes the

 

09:59 - 10:53

Patty - Guest: alcohol. So just as eventually an adult alcoholics body gets poisoned because their liver is overwhelmed, you know, that's what happens to the baby. But when that enzyme does come on board, you want to guess where that enzyme is housed initially in the brain. Oh my gosh. So all those toxins go in the brain. And the damage, it doesn't matter where in the body, if it's the brain or any other system we have, alcohol touches, or it damages anything it touches. So our first 2 systems that we have coming on as little humans is our gut, right?

 

10:53 - 11:39

Patty - Guest: And our digestive system and our central nervous system of the brain. So those 2 things take a really big hit. And so we often see the most damage within those systems. And the brain continues to develop the entire pregnancy. Every single day of the pregnancy, that takes a hit. Now I mentioned earlier that people think of FAS or fetal alcohol syndrome and the facial features. Yeah. Right. The old diagrams from when FAS first became a thing worthy of academic study 51 years ago, Those diagrams had lots of different features. What they have found though is that

 

11:39 - 12:27

Patty - Guest: really there's just 3 key features that tie directly to the alcohol. You can have many of those features, but many of those features might come from other things. So 1 thing you'll see is small eye openings. Another is called the philtrum, which is this space here In people with FAS, not FASD, but FAS, it is smoother than most. It might even be a little elongated and there's next to no upper lip. Okay. So Those are the 3 features. But what does that really mean? People say, oh, so-and-so has full FAS. They have the worst kind. Assuming

 

12:27 - 12:36

Patty - Guest: that having facial features makes it worse than the brain damage that happens to everybody else. It really doesn't.

 

12:36 - 13:18

Cheryl-Host: No. And what I picture is, and this was in my experience, it's almost like kids with Down syndrome who have, you know, a specific facial feature. And teachers like calling in the diagnosis when the kid walks in the classroom. Like, no, no, no. So When we hear about crack babies, moms who are addicted to hair, when there is this whole detox that comes from birth, do FASD babies have the same detox and what does that look like?

 

13:19 - 14:12

Patty - Guest: Alcohol metabolizes as a sugar. So here's 1 curious thing that happens when the baby is born if mom kept drinking throughout the pregnancy, which doesn't happen all that often, right? We are genetically, it's in the very fiber of our DNA, pre-programmed to start making, make those lifestyle changes the minute we know we're having a baby because survival of the species, right? But there are cases where women are trapped by circumstances and in so much pain that they have to numb that pain somehow. There are women who have a true addiction and cannot stop. It's FASD is

 

14:12 - 14:28

Patty - Guest: not caused by women drinking. It's caused by the alcohol itself. Right. There's a lot of reasons why people drink men women old young It's not our place to judge any of that

 

14:29 - 14:30

Cheryl-Host: True. Yeah,

 

14:30 - 14:52

Patty - Guest: if someone is is has been drinking and discover they're pregnant, well, yeah, let's support them and create and in making changes to have a healthy child. But let's not blame them. No, because there's nothing anyone can say that they're not already thinking to themselves every time they look at their child.

 

14:53 - 15:00

Cheryl-Host: Like a behavior. I can't stop. Now I don't feel like stopping makes a huge difference.

 

15:00 - 15:09

Patty - Guest: Yeah. Yeah. Yeah. And you know, it's the alcohol itself that does the damage. It's not the mama's.

 

15:11 - 15:20

Cheryl-Host: That's a really good point. I'm glad you said that. So when when how are we? How do we sorry, in

 

15:20 - 15:55

Patty - Guest: the middle of making the point. Alcohol is metabolized as a sugar, right? Yes. So if the baby has been swimming in sugar water this whole time, all of a sudden that's cut off at birth. So does it not stand to reason that child is always going to be drawn to sugar? So if your child has a sweet tooth, no matter how many healthy greens you offer, that might be part of the reason.

 

15:56 - 15:59

Cheryl-Host: Yeah. Oh my goodness.

 

16:01 - 16:07

Patty - Guest: Yeah. And it doesn't help that sugar is an absolutely everything in our society these days. Yeah.

 

16:07 - 16:17

Cheryl-Host: So how do we, I'm sure it's very different from like how, how are we diagnosing FASD as an infant? How do we diagnose as a teenager?

 

16:19 - 17:05

Patty - Guest: Well, in infancy, the only way to make the diagnosis is with those facial features. Okay. Because, excuse me, most of the other damages, for instance, the ones in the brain, which are the ones that I most concern myself with. Yeah, we don't begin to see them until we start challenging that child in the school system. Right? You can you can see a lot of the effects There are some things to look for in babies for instance Babies that have a hard time latching on and suckling That is 1 common Symptom it's not universally present again alcohol

 

17:06 - 17:17

Patty - Guest: Effects whatever is developed. Excuse me. 1 second. Hey, hey, hey, no inner tobacco. Be quiet. If you're going to play noisy, you have to...

 

17:17 - 17:20

Cheryl-Host: This is a dog friendly podcast, just so you know.

 

17:20 - 17:41

Patty - Guest: I'm so grateful. It's fine. I have an eight-year-old Aussie who is best friends with my 10-month-old multipuzu. Oh my gosh. And the Aussie has his inner Chewbacca comes out whenever they play.

 

17:41 - 17:42

Cheryl-Host: Okay.

 

17:43 - 17:59

Patty - Guest: That's cute. And if it gets too bad then we'll just pause this and I'll put them out. Let's just do that. Okay. Okay. I'll be right back.

 

18:00 - 18:00

Cheryl-Host: No problem.

 

18:00 - 18:48

Patty - Guest: Hey guys, let's go out here. I'll even bring your cardboard box so you can destroy this somewhere else. Okay. How about it? Hi sweetie. How about it? Hi, sweetie. My apologies. My apologies. Not a problem. You must know how to edit.

 

18:48 - 18:53

Cheryl-Host: Well I don't but my daughter edits for me so. Right? I don't have 1

 

18:53 - 19:03

Patty - Guest: of those. So whatever happens on my show, owes out. There you go. That's why the subtitle is candid conversations. That's funny.

 

19:07 - 19:07

Cheryl-Host: Anyway,

 

19:10 - 19:38

Patty - Guest: so 1 of the effects with the little ones is suckling, right? Another is difficulty sleep. Sleep is a huge issue with people who are affected by FASD, particularly if we're talking about the kids who have come through foster care and adoption, right? If they have trauma in their background, then they've kind of already learned to sleep with 1 eye open, so to speak, in order to maintain safety.

 

19:38 - 19:39

Cheryl-Host: Yeah.

 

19:40 - 20:36

Patty - Guest: And, you know, when, when do memories go from short term memory banks to long-term memory banks. Why are you sleeping? So if your sleep is messed up, that makes memory a big challenge. And that's another classic symptom affected probably most people with FASD is working memory. It's better for some than others, right? Again, we have that that spectrum where everyone is affected differently but these kids will often need to be taught something more than once, twice, 3 times. As a parent or as a teacher, It's normal, you know, when someone says, what? We'll repeat something with

 

20:36 - 21:23

Patty - Guest: a lot of grace the first time, a little less grace the second time. By the third time, we're getting frustrated. These kids need things repeated again and again and again because of their working memory issues. Yeah, they really are listening. They really are trying. It's capacity to file something away and recall it, get it back out, is very damaged with a lot of us. And I say us because if you hadn't figured it out by listening to some of my episodes, I too am on the spectrum. And I had not discovered that until I was in

 

21:23 - 22:08

Patty - Guest: that year-long training program. As I'm looking at all the characteristics, I'm like, Wow, I do that. I do that. Oh my gosh. I do that too, right? And so I had a conversation with my mother Did you and a mind you I was born in the early 60s? Okay. Yep Fas was not just discovered until 1973 Wow, so nobody I mean it's been around as long as alcohol has. It's just never been a thing, right, to study academically, to research.

 

22:09 - 22:09

Cheryl-Host: Interesting.

 

22:09 - 22:56

Patty - Guest: I was only 51 years as a research discipline. And So I was born way before that so women didn't know you know add to that people who were born in the 50s and 60s Their parents came you know their their parents were raised at the tail end of women's suffrage Mm-hmm and prohibition So what were they? Going to do They were gonna drink like a guy. And unfortunately, my mom was more different. And so I said, Mom, did you drink when you carry? And she's like, Oh, yeah, every day. Like, who doesn't? Oh, my gosh. And

 

22:56 - 23:31

Patty - Guest: all of a sudden, so she and I play cards all the time, right? It's just something we've done since I was probably 5 years old. Same game that she learned it about the same age. It's just past time. So I used a card analogy. You know, that moment when she's like, Oh, yeah, every day. It's like, it was as if someone took the deck of life that I had been dealt, right? And reshuffled it and handed it back. But the way that cards came back to me, all of a sudden made sense. All of a sudden

 

23:31 - 23:54

Patty - Guest: made sense. All of a sudden made sense for all the things that I had struggled with in childhood and especially those transitional years. I mean, let's get real y'all. Those are challenging for any parent and any young person. But it's a whole other thing with a child with a brain injury.

 

23:56 - 24:00

Cheryl-Host: That's a way to put it like it is a brain injury or 100 percent.

 

24:01 - 24:02

Patty - Guest: It's a brain injury.

 

24:02 - 24:08

Cheryl-Host: And it really hopefully shifts the way people think about it and

 

24:08 - 24:23

Patty - Guest: put a judgment to it. So again, it's not that it's the women who did this to their child. It's the alcohol. That whole was the car in crash.

 

24:24 - 24:25

Cheryl-Host: Yeah, yeah.

 

24:26 - 24:44

Patty - Guest: Right. Yeah. Yeah, some people are in car crashes, not because they're bad drivers, but because there was some a mishap with the vehicle itself. Yeah, yeah, because a lot of times it's their fault, but not the perfect analogy. Yeah.

 

24:47 - 25:24

Cheryl-Host: So let's talk about. So most of my audience, I'm thinking are, you know, tweens, teens to grade 12 and beyond. What is a parent looking for? If they're wondering, like, are there specific things that they might go, oh, Maybe we need to check this out and could be in the case of adoption could be in the case of a foster job Could be in the case of I just had 1 glass of wine for a couple months and didn't even think about it. So yeah, what are we looking for where we need to step in?

 

25:24 - 26:13

Patty - Guest: So let's let's first of all let's set the record straight on this the stats. How prevalent is this? Right? Conservatively, in the general population, we're looking at 1 person in every 20. Which means you know, and everyone listening or watching knows, A lot of people who have this brain injury that make, because of the way their brain has been wired, some things that most people do very easily and naturally need a lot of effort to get them done. We can do all things with the proper supports, right? Within foster care, again, because of that history of

 

26:13 - 27:09

Patty - Guest: adverse childhood experiences, People with ACEs or adverse childhood experiences tend to have a higher prevalence of FASD and vice versa. Right? So, and we also tend to have alcohol use and drug use and violence. All those tend to be generational issues. So in a population where kids are removed for danger, we're getting that population of kiddos, drugs, alcohol, violence, neglect, right? The prevalence within foster care is some would say up to 70%, some would say far more. Wow. So for instance, my colleague, Dr. Susan Rich, who's a frequent guest on my show has said in her

 

27:09 - 27:56

Patty - Guest: book, she looked at child welfare of America, child welfare League of America stats that said 95%, I think it was 99, 1 of the other of kids are in care because of substance abuse. Oh my gosh. Okay, so she kind of chuckles at my saying 70%, but I would rather be on the conservative side, even though my experience says it's a whole lot more than that also, but that's just my experience, right? So that means in a typical classroom, if you have 30 kids in your class, you have 1 or and no foster kids, you have

 

27:56 - 28:39

Patty - Guest: 1 possibly 2 kids with FASD. If you have foster kids, if you're in a community that has a foster care agency or in a county that has a higher than normal rate of kids in care, you have a lot of kids in your classroom every day. Room every day. And if you have provided foster care or adoption, and as a part-time foster care social worker, I don't ever want to dissuade people from stepping up to the plate and caring for the kids in our communities. They desperately need it. But you're not adequately prepared. In the training,

 

28:39 - 29:25

Patty - Guest: they may say, the kids you get, well, developmentally, they'll be about half their age. So if you get a 6 year old, then developmentally, they're like 3, but they don't tell you what does that mean on a practical day to day level? How do you what do you do with that as a parent? Or daycare? Or a teacher? Right? So you see these kids going off to school, and they're just now running up against challenge, challenge, challenge, challenge with their cognitive skills and just beginning to realize there's something amiss, right? And those kids are not sharing,

 

29:25 - 30:14

Patty - Guest: they're not taking turns, they're still doing side-by-side play or parallel play. That's because developmentally, they're still a toddler. We're still 2 or 3. So you have to, 1 of the things that really helps parents and teachers is when you look at a child's ability and you think oh they're so immature they're not it's called dismaturity right it's that uneven development where their body is and the rest of them their social development their just how they're developing that trajectory is a slower pace. It's kind of like when you go to the airport, you can walk down the

 

30:14 - 30:31

Patty - Guest: hall or you can step on the people mover. Yeah. Yeah. Yeah. The body is on the people mover. Yeah. The rest of the social and developmental tracks are they're walking it. Yeah. And carrying all the luggage.

 

30:33 - 30:34

Cheryl-Host: Oh my. So how, how,

 

30:38 - 31:25

Patty - Guest: how, you know, little Susie is cleaning her room as well as the average what year old, right? And then you give the amount of assistance that you would to a child of that younger age. That's how you meet them where they are. And that's when they can scaffold up those skills. And again, it takes a lot of repetition in multiple, you can't teach something in 1 setting and expect them to apply it all over the place. Teach lessons, the same lesson in multiple settings, if you want the outcome to be seen consistently in multiple places.

 

31:25 - 31:39

Cheryl-Host: And I'm thinking high school. And that's where I taught. So those are the kids that I met. And how are we supporting them in school?

 

31:40 - 32:36

Patty - Guest: There's 1 thing that you'll commonly see. Again, it's not universal. You'll commonly see struggles with math. You'll also probably also language skills. So as a special education professional, You've been very familiar with there being 2 different language skill sets. There's expressive language and receptive language. Right. Right. There's, there's generally a disconnect between expressive and receptive language with people who are exposed to fetal alcohol. And that's because language is processed in 4 different regions of the brain. Lightning fast. But if those structures are impacted so that it is really difficult to get from point A to point

 

32:36 - 33:09

Patty - Guest: B that slows everything down. So these are the kids that will always say, what? I don't know, to everything. And what that does is it buys more time to process what was said. These self-preservation, yeah, these are the and and adults will become less frustrated with those answers of I don't know, then then to any other kind of pushback that they may give.

 

33:11 - 33:39

Cheryl-Host: So there's a feeling like as we get out of high school, like as an adult with FASD, is it, I'm not gonna say easier to navigate life, but I'm thinking of kids in this structured, sit down, do this, look like everybody else, act like everybody else. I feel like, do you know what

 

33:39 - 34:26

Patty - Guest: I'm saying? Like is it- These kids will often wear a mask within that structure So that they do look like everybody else. They will hide their deficits, right? You know, in the training that I do, I present a photograph of 1 kid as he ages from being in primary grades through junior high and then 18 and watch those struggles, right? Those differences between comprehension level and expressive level, where his other skill sets are, because, you know, a 6 year old is not consistently 3 in all aspects of development.

 

34:26 - 34:27

Cheryl-Host: Okay,

 

34:27 - 34:55

Patty - Guest: maybe 6 and some maybe 7 in some might be 2 in others. And that's very challenging for parents and adults to figure out what's going on. Another big wrinkle is FASD tends to create consistent inconsistency. What does that mean?

 

34:55 - 34:56

Cheryl-Host: Yeah, same word.

 

34:58 - 35:33

Patty - Guest: That means that something that that child spent so long working on learning and is so proud that they finally got it might be absolutely vanished the next day. Oh, that's so hard. And you know the reason why Las Vegas or any other casino is so alluring is that inconsistent reward. I'm going to keep pulling that because eventually, man,

 

35:33 - 35:35

Cheryl-Host: that payoffs going to be good.

 

35:36 - 36:30

Patty - Guest: Yeah. Hey. So when our child does something, we tell ourselves they can do it again, just like I could score again. I might walk out broke. I might never get that second payout. Yes. So that's very confusing for parents, for neighbors, for friends, Right? For teachers, for everybody. It's confusing when people can know something 1 minute and it be like speaking a foreign language the next. Right? Or it might be word finding that is the difficulty. There's basically there's not an aspect of life that alcohol does not poison because of the brain injuries. It can affect

 

36:30 - 37:22

Patty - Guest: our cognitive skills from language and communication to the ability to understand abstract concepts. I mentioned language itself is abstract. We need to get real about that. My husband often says, why would anyone name a candy bar abba-zabba? Yeah, it's very abstract. How do words come to mean the things that they mean? So if your mind is wired in a way that makes abstract concepts very challenging, then it's hard. Yeah, figuring things out is hard. You know, 1 example I use a lot is where I came from. And I grew up in Pittsburgh, Pennsylvania. There are pockets

 

37:22 - 37:47

Patty - Guest: of community there that use an expression called reading up, you know, you want to read something up, you want to, you know, like go read up your room. Well, what does that mean? It means make it ready for company. Oh geez Okay, if my mind was locked into concrete Then I better hope I don't have a can of red paint

 

37:47 - 37:51

Cheryl-Host: in exactly where my brain was going. Yeah. Yeah.

 

37:51 - 38:10

Patty - Guest: Because that's what they're gonna do. They're gonna paint it red. Oh my gosh. Okay. So there are a lot of very simple things, you know, not all accommodations are big and complex or expensive, like, you know, putting in wheelchair ramps, that's an expensive accommodation.

 

38:12 - 38:12

Cheryl-Host: Yes,

 

38:12 - 38:59

Patty - Guest: some of them are very simple, like slowing down, allowing people time to process what it is that you're saying or asking of them, making sure instead of telling someone what to do, you know, telling your child, show them, do it with them, especially if there's dismaturity involved, then interact with them as you would that younger age, do it with them, show them again and again and again, make it a game. Right? What you want to do is methodically figure out what are my child's struggles and what are their strengths and let's play to those strengths. You

 

38:59 - 39:37

Patty - Guest: know, 1, as someone growing up with FASD, I can tell you that we don't understand a lot and we will create our own explanations for things that may or may not be accurate. All my social woes as a kid, I figured it was because I was diabetic and I was the only diabetic in school. Well, that really didn't explain things too well. That's 1 of those things I figured out when my deck of life got reshuffled. All of a sudden things made sense it's like I was so that's why I was bullied

 

39:38 - 39:39

Cheryl-Host: I know

 

39:39 - 40:29

Patty - Guest: these kids are often the targets of bullies because They are different our society is very intolerant of differences. Right? It might be that they, their lack of abstract concepts might make humor very difficult to interpret. So it's a kid that always tells a joke that falls flat, you know, or doesn't understand sarcasm, right, and becomes very defensive. These are kids that are constantly getting the message, why can't you be like so-and-so? Why is this so hard? Why won't you do this? It's not hard, right? And those messages of judgment get internalized. Yeah. They get internalized.

 

40:31 - 41:24

Cheryl-Host: I'd love to nail some of the misconceptions, the myths. Yeah. So, but I'm gonna tell you what I saw. And I'm thinking specifically about this kid who, oh my, was so brilliant technically he could hack in the classroom He hacked the teacher's computer Got her credit card information When shopping oh same with both of his dads To the point where? Dads would lock literally everything up in a safe money, like he was stealing. He was lying. He was hacking. He was shopping with people's credit cards. And, and just like it's that whole

 

41:25 - 41:41

Patty - Guest: consequence. We so we have a whole lot of things right there. Okay, so I'm going to try and pick it apart. And I may have you come back to this Yeah, find the next bunny trail that's there because that 1 example laid out a whole slew of possibilities,

 

41:42 - 41:44

Cheryl-Host: okay Good

 

41:45 - 42:42

Patty - Guest: Money is abstract It's abstract look at our bills they're all the same size What differentiates them? The number in the corners. Right. They're the same size. So how does 1 realize the value difference when they look the same? If you have 4 20s and 1 100 dollar bill And you are a concrete thinker, you're really going to struggle to realize that that 1 bill is worth more than 4 of these. So that's a challenge. Okay, look at our coins. Right? You've got a dime, which is worth 2 nickels. Nickels are both bigger. Yeah. Diameter and thickness.

 

42:43 - 43:32

Patty - Guest: Pennies are bigger. So that makes no sense, right? Yes. And now that we've moved into a digital world It's even more confusing right writing a check was enough of a stretch like think of your grandparents And did they and when when Social Security stopped getting those checks stopped coming to the house because of theft Mm-hmm. Mm-hmm. My husband's grandmother was like I don't want it in the bank. How do I know it's going to get there? Right? Yeah. And, and she would not use a credit card. Right. But it's like, come on, grandma. What's the difference

 

43:32 - 44:22

Patty - Guest: between you punching in the numbers and the clerk at the bank punching in the numbers? Same process either way. Yeah. So if you're someone, if you're a kid who thinks concretely, How are you going to understand money that is somewhere else? Wow see it You can't count it feel it The difference between concrete and abstract if you can't hold it in your hand to figure it out if it doesn't fit here it's abstract. Yeah. Oh my gosh. Right. So money is hugely abstract and a Lot of people with FASD really struggle with money They really and

 

44:22 - 45:05

Patty - Guest: you don't see the money. It's not like a piggy bank where you can count it Assuming you have those skills not all kids with FASD can get that It depends on how significantly they're impacted. Right. But you can count it. You can see it going down. You can use that. And this is a helpful hint for parents of teens and tweens, right, to start that concept of budgeting. Use paper envelopes and cash. Label each envelope with what that money is for. That's going to lay the groundwork for fiscal responsibility. So good. In a concrete way that

 

45:05 - 46:07

Patty - Guest: they can still go to it and count it and make sure there's enough. But when we live in a digital world, that's next to impossible. So another piece of this is the whole concept of personal property. That's another abstract concept. Your name isn't on it. So it's not yours. Finders keepers. Interesting. Right. So are they stealing? The other kid's name wasn't on it. It was just there. Another piece of this is that if your brain lacks the connection between cause and effect, There's no way to predict outcomes for your behavior. And therefore no reason to inhibit

 

46:07 - 46:10

Patty - Guest: that impulse to take what it is that you want.

 

46:10 - 46:29

Cheryl-Host: And not remember what happened last time and last night, right? And I remember trying to use an analogy with teachers who were not understanding this. And it was if a kid with FASD puts his hand on the burner, and burns his hand on the stove, he will do it again,

 

46:30 - 47:11

Patty - Guest: And again, and again, just to try to like really have an impact on what this actually means. It again, it comes back to memory struggles, problems with working memory. And here's another memory thing. It's called. Well, let me describe the scenario. You said lying. These, you know, the kid that I'm thinking of in my class lied all the time. Were some of those lies really bizarre? It's like, come on, dude, How can you really expect me to fall for that 1? Is that what you were talking about? Yep. Huh. Yep. That is an issue of false

 

47:11 - 47:56

Patty - Guest: memory. In order to lie, You have to have an intent to deceive. That's not that's not most of these kids. These kids are people pleasers. Most of these kids have been blamed, shamed, punished all their lives for things that are the effects of brain injury. It's not for lack of trying. It's not because they're they're trying just as hard on a day that they earn an F as they are on a day they earn an A. They want to please and they're being confronted. Why do you have that? You know you're not supposed to have that.

 

47:57 - 48:04

Patty - Guest: Right. I don't know what this is doing in my hand but I have to come up with something because I really don't want them to be mad at me.

 

48:04 - 48:07

Cheryl-Host: Oh man, you're just hitting some emotion here.

 

48:07 - 48:55

Patty - Guest: Like, oh my gosh. They'll snatch whatever they can come up with in a second to explain what this is doing in my hand. Yeah. And it probably makes no kind of sense. But it's not a lie because it's not an intent to deceive. It's a problem with false memories. If voids are an unpleasant thing in the universe, you think of the black hole, things get sucked into it. Yeah, yeah. We all deal with voids with a mechanism. It's a defense strategy called confabulation. Think of the days before TiVo, before you could pause and come back to

 

48:55 - 48:58

Patty - Guest: your TV without missing anything. Right?

 

48:58 - 48:59

Cheryl-Host: Yeah.

 

48:59 - 49:16

Patty - Guest: Now, I know a lot of your listeners probably didn't grow up in that era. But a great many of us remember, I think I can take a bio break before the commercials are over. And we make the mad dash, either the restroom or the kitchen.

 

49:16 - 49:19

Cheryl-Host: What's more important? I got a peek or I need a snack.

 

49:19 - 49:44

Patty - Guest: Right? And if we don't make it back before the end of commercials, then our mind spins 100 miles an hour trying to figure out what did I miss? Oh, It's the same thing. We all do it. We all do it. But these kids, because they have memory challenges, do it a lot.

 

49:45 - 49:59

Cheryl-Host: Oh my gosh. You've just got, where have you been? If I had had you to coach some of the teachers and coach me, like I only knew what I knew. Yeah.

 

50:00 - 50:00

Patty - Guest: And I

 

50:00 - 50:08

Cheryl-Host: think many of us know. Like, oh, the shifts, the shifts that you're, oh my goodness.

 

50:08 - 50:12

Patty - Guest: None of us knew what we did not know until we finally learned it.

 

50:12 - 50:13

Cheryl-Host: Yeah,

 

50:13 - 50:26

Patty - Guest: so give grace to yourself Yeah grace to Co-workers back in the day You can even say hey, I've got a lady who can do a training for you Yeah, I'll be happy to Wow, I want to

 

50:30 - 50:44

Cheryl-Host: It's so funny because when I was prepping and everything for this man, I want to find this kid Yeah, I want to find this kid and I'm gonna do what I can because I Yeah,

 

50:44 - 51:21

Patty - Guest: yeah Life is not easy with an undiagnosed FASD. And even though it's 1 in 20 kids, general population, a heck of a lot higher than that within kids in care. Yeah. Even though we are over twice as prevalent as autism, right? Autism is 1 in 42. We're more actually than 1 in 20. The current stats actually is at 1 at 15, but that study has not yet been peer reviewed. So we're still going to run with 1 in 20.

 

51:21 - 51:23

Cheryl-Host: Oh my gosh.

 

51:24 - 51:38

Patty - Guest: Right. Oh, twice as common we we FASD is more common than autism, cerebral palsy, downs and spina bifida combined. Wow. Right.

 

51:38 - 51:39

Cheryl-Host: Oh, I

 

51:39 - 51:54

Patty - Guest: mean, think of what 1 in 20 means. Yeah means several people on your street in your office in your classroom in the boy scout troop or the girl scout.

 

51:56 - 51:58

Cheryl-Host: I had no idea.

 

51:59 - 52:07

Patty - Guest: It affects every strata of our society. There is no income bracket that does not use alcohol. Therefore, There is no income

 

52:07 - 52:07

Cheryl-Host: bracket that does not use alcohol.

 

52:07 - 52:28

Patty - Guest: Therefore there is no income bracket that does not have people with FASD. Yes. Every race, every ethnicity, every neighborhood, every religious belief. Well, there are some that that don't because of religious beliefs and

 

52:28 - 52:28

Cheryl-Host: that's correct.

 

52:28 - 53:01

Patty - Guest: But there's also a lot of people that say they don't and they do. Mm-hmm. True story. Right? And there are those faith communities that drink. So for instance, during, for instance in the Jewish community, it's, I mean, it's a very small, It's like a thimble full of wine every Friday night. Or communion and the paleo church is wine, not grape juice, wine. So

 

53:03 - 53:07

Cheryl-Host: it's everywhere. It's So normalized and yet FASD is not.

 

53:08 - 53:12

Patty - Guest: Yeah. It's our society has a love affair with alcohol.

 

53:14 - 53:16

Cheryl-Host: Oh my goodness. Okay.

 

53:16 - 53:40

Patty - Guest: And the alcohol industry learned from what happened to big tobacco When we went after big tobacco for the cost of lung cancer emphysema and COPD Right and they said, oh, we're not gonna do that. So the big alcohol Has been buddying up with the halls of congress And the senate,

 

53:40 - 53:55

Cheryl-Host: wow, that's a that's a whole other podcast Okay, I want to wrap Oh, wow, there's just so much. Okay support systems resources where can we look?

 

53:56 - 54:32

Patty - Guest: Okay, so basically, number 1 is Remind yourself that your child or your student has a brain injury. Right. And like any other physical disability, the answer is in accommodations or workarounds. Like I said before, don't have to be complicated, expensive. You know, 1 very simple thing is to ask yourself what if their brain has something to do with this? Right? And I hope you have me back because I've, I've done so much more.

 

54:32 - 54:38

Cheryl-Host: Without a doubt, because I have like 80, 000 more questions as you start speaking. I'm like, Oh, I want to ask this. They

 

54:40 - 55:09

Patty - Guest: want to say. So find the compassion that you would for any other physical disability. This 1 is just invisible. And it actually is very visible if you know where to look, you know, if you know what to look for. So, you know, again, it's the challenges to actually comprehend the language, you know, just because your child's repeats the instruction does not mean they understood it. It just means they're good parents.

 

55:09 - 55:12

Cheryl-Host: Yeah. Yeah. Right. My goodness.

 

55:13 - 55:27

Patty - Guest: Always go to a an action oriented or a visual oriented modality. Okay. Show me. Show me. Did you clean your room? Yes. Show me your clean room. Yes. Show

 

55:27 - 55:32

Cheryl-Host: me you finished the assignment. Show me you know the math concept. Yes. Yes.

 

55:32 - 55:58

Patty - Guest: So good. So good. And always provide the support you would to their developmental age, which you can then can vary all over the place. And that's so important. And assume that behavior reflects how well their brain is working, instead of it being a matter of motivation, because you cannot motivate brain damage out of somebody.

 

56:00 - 56:06

Cheryl-Host: Oh, there's the mic drop. There's the mic drop. Say it again. Say it 1 more time.

 

56:06 - 56:13

Patty - Guest: You cannot motivate through consequences or rewards the brain injury out of somebody.

 

56:14 - 56:19

Cheryl-Host: Thank you. Damage is way to wrap. Yeah, yeah.

 

56:19 - 56:20

Patty - Guest: So I'm just permanent.

 

56:21 - 56:43

Cheryl-Host: We're gonna do this again, because I know I'm gonna have 18 more questions. But thank you. I can't thank you enough. Patty, this has just been so enlightening for me. And I know enlightening and empowering for parents who are not sure what's happening here. How can we work with you? Where can we find you?

 

56:43 - 57:35

Patty - Guest: Okay, let me say 1 other thing on that. So if you've had your kid in therapy and they're not making any progress, it's because their therapist has been operating under the same assumption that it's just a matter of finding motivation. Okay, None of this is taught in grad school. None of it. People have to seek it out. Yeah. Right. So you can find my website is patriciacasper.com. Casper's with a K. Casper's with a K, it's the designer, not the ghost. It's all about the clothes. My podcast is living with FASD, Candid Conversations with Patti Casper, and

 

57:35 - 58:05

Patty - Guest: mine is the only show that blends both professional expertise and lived experience. Perfect. Yeah. So my guests, Many of them are professionals in this sphere, and many of them are people who have been living this just like I have. And you know, whether they've known about it since childhood or known about it, you know, late in life, I was 56 when I figured it out. The prevalence is off the hook, right? 1 in 15, 1 in 20.

 

58:05 - 58:07

Cheryl-Host: Yeah, oh my gosh.

 

58:07 - 58:53

Patty - Guest: 7 in 10 for foster care. But the diagnostic rate is 0.01%. And I learned that stat when I was doing the research for my book sip-by-sip candid conversations with Patti Casper and even though it is Children and families that brought me to this. Mm-hmm 1 of my passions is for adults who have been blamed, shamed and punished all their lives, never understood why, always asking themselves, what is wrong with me? Yeah. Oh my God. So convinced through life that they're to blame for all of it, you know, to reach those of us, to give them that

 

58:53 - 58:59

Patty - Guest: aha moment like I had 4 years ago, almost 5 years

 

59:00 - 59:01

Cheryl-Host: ago. Wow.

 

59:02 - 59:10

Patty - Guest: It's, it's not, if you're living with alcohol, you know, the effects of prenatal alcohol exposure, it's not your fault. None of this is your fault.

 

59:10 - 59:11

Cheryl-Host: Yeah, yeah. Such an

 

59:11 - 59:12

Patty - Guest: important point.

 

59:13 - 59:21

Cheryl-Host: And that's got to feel so like a weight off your shoulders if you actually are able to get them.

 

59:21 - 59:42

Patty - Guest: It changes nothing and everything at the same time. Yeah, yeah, great point. Great point. Doesn't change the past. Doesn't, you know, doesn't change anything. But because I can now change my perspective, it changes everything. Yeah. Yeah. Changes.

 

59:43 - 59:48

Cheryl-Host: The fact that it's no blame on you, I think it's got to be huge. Yeah.

 

59:49 - 59:59

Patty - Guest: So my book tells 10 stories, my own, and then it's written in conversational tone, right? I am interviewing 9 other people.

 

01:00:00 - 01:00:34

Speaker 1: About what it was like for them. What made them start considering FASD as a possible source of their struggles? What the diagnostic process was like? And more than anything, What are they doing to move the needle forward in terms of awareness? Typically for those of us who found out later in life, we're all committed to moving that needle forward because we know the power of understanding yourself for the first time.

 

01:00:34 - 01:01:03

Speaker 2: And I think we moved the needle a little bit today. It makes me so happy and so grateful. It's been a pleasure. I'm so grateful. Oh my goodness. Again, we'll be doing this again. But I just thank you for doing this. Thank you for the work that you do You're very welcome these kids these adults for all like and the empowerment and and the education and the awareness Like thank you for all of that. I'm so grateful that you do this and I'm grateful you're here and

 

01:01:05 - 01:01:27

Speaker 1: Yeah, the podcast is on YouTube on my YouTube channel it's on Spotify and Spotify shares the audio tracks to a number of other places Books at Amazon You can also actually add if you if you're 1 of those people that likes supporting local business, go to your bookseller and they can order it for you.

 

01:01:27 - 01:01:39

Speaker 2: There you go. I'll put everything in the show notes. I'll put all the links in there. So everyone will be able to find you and For sure. We'll chat again. Oh my goodness,

 

01:01:39 - 01:02:04

Speaker 1: and I do do professional development trainings. So Yeah, love it. Yeah Folks who have been raising kids with special needs, they don't have the money to pay the typical coaching fees that are out there. So I like to do the professional development training to bring in the money that will offset the coaching that I do.

 

01:02:04 - 01:02:06

Speaker 2: Oh, that's so wonderful. What a

 

01:02:06 - 01:02:21

Speaker 1: big heart you have. Life's short. I want to make it better for as many people as I can. Teen Minds redefined with Cheryl Pankhurst. New episodes out every Wednesday. Thanks for stopping by.

 

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