A Mother’s Story Of FASD Advocacy And A Daughter’s Spark

Welcome And Why Liz Matters

SPEAKER_00 0:22

Welcome to Real Talk with Tina and Anne. I am Anne, and today is one of those conversations that is deeply personal for me. Our guest is Jody Kolp, an author, advocate, speaker, and one of the pioneering voices in the world of fetal alcohol spectrum disorders. But today we're not simply talking about FASD. We're talking about her daughter. Her name was Liz. Liz lived with prenatal alcohol exposure, learning differences, sensory challenges, medical complexities, and eventually devastating physical illness. But when I read Jody's book, which I read every word, Iridescent Spoons, Colors of Courage, and she has many other books out too. But I didn't just see a story defined by what Liz couldn't do. I didn't see Stigma of FASD. I saw this beautiful, sparkly human being who was smart, creative, determined, and incredibly resourceful. She had workarounds around her workarounds and a never give up spirit. She went into dialysis wearing colorful wigs and lashes. She dared to fight everything that she was up against. And through it all, she loved God and continued turning things over to him, even until the end. I couldn't put the book down. And this just isn't a book for people who know someone with FASD. It's for anyone who has lived in hospitals and loved someone with disabilities or fought systems that weren't designed to understand the person standing in front of them. Liz learned to advocate for herself and understand how her brain worked. She wrote books when reading itself was incredibly difficult for her. She found ways to tell her stories. She cooked, you know, and I loved the story of Liz's kitchen, which we will get into, and it was brilliant. And there was a heartbreaking reason it didn't come to fruition, which we'll talk about for sure, all aspects of it. But she created a sensory kit, which I think everyone should experience. And she traveled, she performed, she sang, she spoke in front of legislators she loved and she helped people understand a world they couldn't experience themselves. As someone who is neurodivergent with FASD, and I just found out that Joe that uh Jodie is as well. Welcome to the family.

SPEAKER_02 2:50

Been there for a long time.

SPEAKER_00 2:53

But you're out.

unknown 2:54

So I'm out.

SPEAKER_00 2:57

And I'm raising three kids with FASD and other differences. Uh, there are so many moments, there were so many moments that I thought in this book, I know this brain. Some things that Liz did reminded me of my children, some things reminded me of myself, and some of the things that Jodi did as her mother reminded me of what so many of us parents learn to do. We go around and under and over and through systems that weren't built for our kids and too often judge them harshly. So today I want to talk about her fighting spirit. I want to talk about what the rest of the world couldn't see. And Jodi, we also have to talk about what you learned along the way and what you've done with that knowledge because from you discovered things like prescriptions aren't necessarily the same just because the Bible says that they are. To you, you created your own medical charts, you navigated the health care system, and you have taught families and caregivers how to advocate within systems that don't understand. You have worked with my brother from another mother, RJ Formanac, and helped build Red Shoes Rock, which we will talk about that and how it originated. You helped Liz with her books, you educated legislators as well, and you have become one of the strongest advocates for people with FASD and their families and everybody who loves them. There is so much here that we will talk about. And I'm not kidding when I say that what you have done is phenomenal. Jodi, welcome to Real Talk with Tina and Ann.

SPEAKER_02 4:31

Wow, how do I finish that?

unknown 4:33

Thank you.

SPEAKER_02 4:35

So I'm gonna just say something. The first time I met Anne um was in social media, and you were you were out. You were coming out and you were walking this path the first time by yourself. And and I kind of um, you know, put nice things in there once in a while in the social media and encouragement and and had no had and just was really proud of you. And I think it was even before I let people know um that I had FASD too. So yeah, and there's all levels of it, right? We we we have people that are um significantly affected, and then we have people that are, you know, PhDs. Um yeah, and the PhDs are coming out now, which is really cool because it's and the more of us, the more of us that show what we can do, the more of us that show what we have done when all people knowing it, the more that happens, the less there will be stigma, and that's yeah.

SPEAKER_00 5:29

That's that's right. And I think that there's so many people that have it and they really just don't even realize it. So uh they really do have to renew remove the stigmas because uh we're here. We're not going anywhere, and and we do amazing things. I mean, to find out with everything that you have accomplished, that you also have it just warms my heart so much, and it gives me so much hope for a lot of people that do have it, that struggle, you know. And I'm sure, I mean, I don't navigate this world without my navig without my external brains and all my helps and resources that I have learned um to take on. And, you know, we build our own toolboxes, we just do, and I think that it comes with resilience and it comes with all these things that you know uh we have to have in order to make it in this world, uh, in a world that wasn't built for us. So, but you are right. We did absolutely like you know, I thought that we had met uh on the phone, actually, or through our it was through RJ and I, back beginning of Flying with Broken Wings, had a call-in show. And I'm pretty sure you were on it.

SPEAKER_02 6:40

I probably was, yeah. Because RJ knew the first time RJ and I met, it was clear to RJ, you know, that and and he we said, no, let's not, let's not tell anybody. Let's not because if we tell somebody, and this was back in 2012, 2013, and it you know, if we tell you've got a reputation, if you tell somebody we might lose that. Let's let's so we started Red Shoes Rocket to build momentum and uh more books, and Lizzie, of course, became a uh, you know, a older, you know, more mature adult. And um yeah, and we'd gotten through the transition. So yeah, just yeah, she was cool, cool kid.

SPEAKER_00 7:19

Well, yeah, I was gonna say, you know, before we talk about FASD and all the things um about what it means, I want to talk about Liz as her mom.

Who Liz Was Offstage

SPEAKER_00 7:30

You know, you were her mom. I was who who was Liz when nobody was watching?

SPEAKER_02 7:36

I I'll give you one explanation. It's really easy. She had um, we had dogs, right? We've always had dogs. We've been a family with dogs, and of course, um, I eventually became a dog trainer because I wanted a thousand brains that I could work with that got angry quick, and dogs can do that. So that would was a way to figure out our kids a little bit more. Was there something I could do to help dogs stay in their cortex? Maybe I could translate that. So this is a dog story. So Lizzie is three, and and and we had three standard poodles, all more than 55 pounds, and one was 90. So she's this little tiny person, and she was always a tiny person. And and I said, and my husband said, Oh, Abraham, he is a criminal. And my my and Lizzie says, Well, what is is I see? And she goes, he goes, Well, I see needs consistent parenting without parenting Isa all the time, he just gets into trouble. She goes, Well, what is Joey? And I Carol said, Well, Joey just needs love, he just needs love, and that is just all he needs. And with love, Joey just wants to be obedient and just follows through. And then she puts her little fingers on a little thing like this, and she goes, So what am I? And Carol says, I don't know. What are you? She says, My parenting is attention parenting. Okay. So that kind of tells you right from the get-go. Her first word was no. Her second, hungry. So, you know, um, mom and daddy, we came a lot later down in the road on who we were. Doggy was the next one. And then the next one was a sentence, doggy do it, which was to blame the doggy for doing everything she didn't want to be responsible for.

SPEAKER_01 9:21

So she was already working their workarounds, right? At age, at age one and two.

SPEAKER_00 9:26

You know, I think that is it just is an innate thing that comes with it. I really do think so, because we have to be so resourceful from the very beginning and figure it out. And I think we do learn that very young.

Differently Brilliant And Early Supports

SPEAKER_00 9:38

You know, there's a phrase which kind of explains exactly what you're talking about, is that she was differently brilliant. And I love that you put that in your book. I underlined it because one of the things that happens with neurodivergence is that people see what somebody cannot do most of the time, but they sometimes completely miss what they can do. And Liz was brilliant in so many ways. Liz struggled with things that seemed simple to other people: time, sequences, memory, reading, you know, all those things. But then there were areas where she was remarkable. So, what did differently brilliant look like in Liz?

SPEAKER_02 10:21

So she she never learned to read a map. Um, that was that way. She never learned to read a recipe, she never learned to read charts. Those were complicated for her brain. Her brain did not work like that. So we used recipe cards. Um, we used, you know, whatever, whatever we what we had, you know, and when when she a lot of a lot of things began happening better as we started dealing with her core. And we had met with a clinical nutritionist when she was 10 months old. So she was really little when we started that. And and that that began changing her body structure because we were now feeding her food that was exactly meant for what she needed. And that of course changed our bodies too, because this is things we talk about now as being powerful. But you know, back in 1989, you know, it was new and innovative. And today it's part of just who we are. So, you know, she was she was she was blessed in that way of getting um getting the nutrition, but there were so many things we didn't see until we finally pulled in a uh a neurobehaviorist that would look at her as uh, you know, with that, where is she developmentally? And then we started. I mean, she she grew 18 months of in, you know, she grew like years in just as the brain connected in new ways. Did we replace what was missing? No. Do we have workarounds and detours? Yes. Did we know where the developmental steps were next? Absolutely. And and as Patty Casper's saying, um and and is coming up with her new book is we all have wildflower brains. And I love that term. That you know that that you know, we we you know, the fire, fire has gone through and it's just like alcohol is just it's a solvent, it destroys like a fire on a prairie or fire in a woods, and the first thing that blossoms is the flowers. And so um our brains are wildflower brains, and I think we're going to see a lot of that coming up, and that's how this was raised, like a like a like a wildflower. Like it's okay to be a wildflower, you know, it's okay to, you know, yeah, you gotta live in this world where we are, but you get to be you. You don't your spirit doesn't have to go. I can you can be just that spirit can stay. And a lot of parents squash the spirit instead of embracing the spirit and using it to get to the next step.

SPEAKER_00 12:41

Yeah, I mean, it's so complex, and we are so complex, and we can have really amazing days and really rough moments. I mean, that's just the way it

Sensory Overload Behind Big Reactions

SPEAKER_00 12:53

is. And I mean, there's a description of from Liz's childhood that reminded me so much of one of my children, or actually more than just one with FASD, that tiny triggers enormous reaction. And a substitute teacher, a fire drill, someone moving a chair, borrowing a pencil, could completely derail her and later imagine spending so much time in hospitals and lights, noise, strangers touching you. I mean, I don't even go to a doctor because of that. So I really think ERs need special designed spaces for people with sensory and developmental needs. I really do. But what people miss is that that pencil or that chair isn't the whole story, it's the nervous system. And it may have already spent hours processing lights and sounds and transitions and social expectations and demands. The pencil is simply the last thing it handled. Liz might explode or she might shut down and retreat to the bathroom, which I thought was really clever clever that she actually called it the rest room because that's what it is. It's the rest room. I mean, come on. So, how much of what we call behavior in FASD is really the sensory and nervous system saying, I can't process one more thing.

SPEAKER_02 14:22

Yeah, yeah. I reached through last night. I just sat in with dinner and I said to Carl, I said, Let's go to bed. He goes, Oh no, we're not going to bed. We're gonna go look at look at the glow lights. I'm like, what? I think we're just done. And and he knew better. He knew better. He knew that Lizzie and I had worked, you know, all these years for this. And he said, I'll drive. You just take pictures and watch. And so I did, and and I finished it, and you can see on the memes, but I finished it and he parked right in front of the pink column on the I-35W bridge, which is a huge bridge, and it was totally lit up in red, except for Lizzie's column. And I I was just like, wow, you know, there I stood in front of this pink, bright pink column in the red bridge, knowing that she's still advocating, you know, she's still it, she's still saying, you know, diversity within diversity is part of this the thing. We're all individuals, and you know, one person standing up can make a whole difference in the structure. And it did. She did. She, you know, she she did that. She did a job well. She did her job here really well.

SPEAKER_00 15:26

She really did. And I want to talk about Red Shoes Rock since we are talking about it in this column that you're talking

Red Shoes Rock And The Pink Column

SPEAKER_00 15:33

about. So let's just kind of go there where uh, you know, it became it's a movement, it is a movement. So, you know, just talk about all of that and uh what happened and the pink column.

SPEAKER_02 15:48

Yeah. Well, it started because our I I was going up speaking as a keynote, and of course, you know, from my books and all that kind of stuff, right? But but RJ was there, and RJ was having a a little bit of a discussion with this this the uh person setting him in, and I'm looking at him and I'm thinking, that guy needs a little bit of help. So I go up to R and I go, I go, Hey, I like your red shoes, just kind of like a redirect, because that's what you do when you're dealing with our wildflower brains. And I said, Hey, I like your red shoes. Tell me about them. And that immediately broke the conversation off that you know, and then and then after we talked about shoes, we got him all straightened out and the the lady that was getting crabby, no reason. She shouldn't have been crabby, she, but she was. Um, and then we sat down and talked. Then we sat down and talked, and and at that point, my son in in Sweden, we did host children because Lizzie was so complicated. Um, even though we could have adopted more children, um we decided that having more children would have taken away from Lizzie. And if we would have gone further in fertility, we could have gotten who knows what kind of kid, right? And I didn't want to lose her wholeness. And if I got a kid that was more brilliant, if I got a kid that was more like me, it would have, it could have taken away from what her needs were. So we didn't do that. We did host kids, we did kids from around the world instead, which was good because then they went back home saying, We're not drinking while we're pregnant, you know, and they it it became a movement even within places like Brazil and Germany and you know, things like that. But she he said to me, He said, Mom, could you run a social media campaign? And that's what I do. I do graphics and communication and writing. So he said, Would you run me a social media campaign and see what you can do with the current algorithms? And Facebook was very different at the time. And and just do it for me because I want to know what can be done. I thought, what could I do? I want to do something effective, not something that's just like, yeah, like for me, right? So I took RJ's Red Shoes and we created a 30-day run-up because my heart was broken because I was part of the 1999 and 9909 at 1999. I was part of that movement of Fast Day with Bren and Bonnie and Teresa. So I was part of that original grassroot movement and it was getting it was atrophene. It was, and I thought, we've got to get a run-up going, we've got to get something moving. So we started with 30 days and and it worked. It worked, you know, and then and by 2016, we had 16.5 million hits on Facebook.

SPEAKER_03 18:17

Wow.

SPEAKER_02 18:17

Which was crazy. But then they went to advertising and Lizzie got sick. And a lot of things happened at that time frame that were travesties for beetle alcohol, but and for us and for our movement, because that was when Liz's Kitchen was starting. There just a lot of things. Liz's Kitchen was starting, she was really going ahead. She had just finished another book, you know, just yeah, really good stuff. And and and then they changed the algorithm where you had to pay for advertising. Well, this has been grassroots. This year we got monetized from Facebook. We got 900,000 views, which is like incredible in today's market with $18 worth of advertising. And we made, are you ready for this? $45. Wow. Hey. Yeah.

SPEAKER_00 19:01

Yeah, you're big now.

SPEAKER_02 19:03

Big. So when I hand this off to the next generation, which is my plan, it's it's ready to hand red shoes arc off to younger people. Some 70. I'll be 70 in two months. So, you know, I want to hand it off to maybe three, but it's close. This by the end of the year, I'll be 70. So I want to hand it off to the next generation so that they could take and run with this, right? And that there's the foundation is there and the momentum is there again. And and since Liz passed three years ago, I finally felt the energy this year to really make it effective. And Catherine joined me in Austria and did all the little cartoons and you know, and then we did the the the the um what do you call it? The the Northern Lights from Zach and Community Compassion. Okay. And um then we had, you know, Mary Burns joined in and Patty Casper joined in. There were other people that joined in and yeah, and so yeah, we'll ha hand it off for 2027. I won't be leaving, but I'll be I'll be in the I'll be in the the background, not not doing all the work all night long.

SPEAKER_00 20:04

Well, I'm since you mentioned 999 and all that other stuff,

FAST Day Beginnings And Stigma Shift

SPEAKER_00 20:08

yeah. I mean, talk about what that means for people with uh fetal alcohol.

SPEAKER_02 20:13

Okay, so so originally the the whole pioneering movement was on listserfs, which is doesn't exist anymore. It was just basically a chat or like we text, and you you know, some photographs, and they didn't really go through us, mostly text a few lines and get back and forth. And they uh uh Teresa Kellerman and Bonnie Buxton and Brian Philcox came up with an idea to ring bells around the world, and so to do a bell concordance on nine nine, nine months um of pregnancy. And since there were so many nines, it seemed like we could do nine nine at 909 on in 1999. So that was the that was the idea, and uh and we did it. We rang bells, we got as many people to ring bells as we could, and we rang bells all the way around the world and got almost all the time zones. So it was possible on the listserv to do it. Um, but it was totally different. Now we put the it on here, right? We put the bells ringing on our phones so we can ring it all over, but um, yeah, that's where it started. And um, it was called Fast Day. The um it was uh the the metaphor was a butterfly, where if a um if the wings of a butterfly could change the momentum of the earth, you know, the air that it would it would make movement throughout the whole world by just flapping its wings. So that's where that's where that came from. So by 2013, it was, you know, it was kind of forgotten. The the world had changed.

SPEAKER_00 21:41

Well, it's brilliant, and I'm glad that it's taking over again. I'm I can actually feel it in the air more than I had before. So it just it seems like it is more out there.

SPEAKER_02 21:51

Yeah, more people, more younger people, which is nice too. You know, the the interesting thing on our campaign this year was the largest. Group of viewers were 24 to 35 year old men. Okay. That's like interesting. Oh my heart. Isn't that interesting? Because, you know, we in our studies and our research, we often found that um women would drink if men drink. And and and and I mean that's maybe not all true today, but historically that was it. If the men was drinking, the woman would drink alongside her, the you know, the partying kind of thing. In which case then you're dealing with yeah, lack of self-control and you know, I mean, all those kind of things. So there's there's a lot of going down the slippery slope with alcohol and getting pregnant.

SPEAKER_00 22:41

Yeah. Yeah, education is the key. It really is.

SPEAKER_03 22:46

Yeah.

SPEAKER_00 22:46

And one of the really cool things is that Liz wanted to educate you on who she was and how she heard and saw.

The Sensory Kit That Built Empathy

SPEAKER_00 22:56

And this is one of my favorite stories in the book. You know, Liz basically decided that people aren't understanding, so this is what it is. And I'll I'll kind of explain it, and then if you can explain uh what it what this did for you. I mean, this was amazing because she wrapped tin foil around your head and your ears, and then she added twine and around your neck and wrists, I think, and then she added lentils, and then she added sensory distractions, and she had she had you use your non-dominant hand to write with for a spelling test, and then you know, I mean, she added smells and lights and the vacuum. I mean, she did all the things, and then she told you to write down a word, so we won't give that word, but I have to read the book to get the word that I wrote. Yeah, we we won't, you have to read it uh for yourself, and you know, it's really interesting because she knew exactly how to present it to you for you to do that, uh, for you to feel exactly what she was feeling. I just found that really interesting. But what did you experience that day that helped you understand Liz in a way that you hadn't before?

SPEAKER_02 24:14

Well, I I don't have the sensory issues that she does. I have the face, right? So my my effect is is different than her effect, and I would probably be in the early days diagnosed as FASD because of the face, but not and my parents knowing they drank, but not um, but had been able to do a lot more than she was able to do. But she was very observant, very observant. She could see um birds in the tree that no one else could see, and she could see you notice things in nature and around and it in around an inner surroundings. She became very alert. I was like, I get it. Wow. Wow. Empathy. You know what I mean? She her little idea created empathy. But she was, you know, some people say that these kids are grandiose. It's only because we don't think like a wildflower brain to get to the way to grandiose when she came back and said, I'm gonna, I'm going to go for the Tiger Woods scholarship and I'm gonna use my my my sensory kit and I'm gonna tell them about it, and I'm and then she wins first place. I mean, it's like yeah, and then we took it, we took it on the road. We too, I took it to Australia. I took it to Australia in 2001.

SPEAKER_00 25:28

And what happened? What what happened with that? You mean the the kit and everything?

SPEAKER_02 25:32

Yeah, I took the sensory kit. I was speaking on um allegations and how for foster parents because it's something that that happens to us lots of times. And so the first book I'd written was called Families at Risk. Um, and it was a guide for out-of-home care to help families stay healthy and to help families understand what's like that, oh, I got an allegation and this isn't the end of the world. Not only will I walk through it, but there are 416 questions that I have that nobody will answer. There was no AI to ask a question to, you know, at that point. So so that book was the AI book of of the previous generation to answer questions um that were legal and and made happen. So um that's what I was speaking of. I was speaking for five days and doing a big training in in Brisbane. And part of that was the um a little bit of time I got to do fetal alcohol, which was one of the first times we'd have really done anything in Australia. And but Liz's book was part of that. And yeah, they all they all changed. I mean, you how can you do that without changing, right? And and that word, yeah, that word happens quite often, you know. So the the misspelling that I had, um, it's not a hard misspelling to make, especially if you have a lot going on and you accentuate that word. And you've already been playing with them, right? I mean, I knew she was playing with me, so I'm thinking, yeah, that's probably what she said, you know. Yeah, yeah, yeah. You can't experience that sensory kit without coming back changed.

SPEAKER_00 27:05

No, and I was really amazed all the things that she put in the box, you know. I mean, I think that that's I does it still exist? I'm just curious. Can you get those sensory kits or have you?

SPEAKER_02 27:17

I mean, you know, I don't know if I have one in my files. I may have one in my files, but they they're so easy to create, right? They're yeah, they are, but they are are just you know, um, this is a plastic bag and and some tinfoil and twine um and lentils, and that all went into the bag. And I'm sure I would guess that it says she won first place. I would guess that's they actually tried it at Tiger Woods. You know, they probably said, Oh yeah, what is this? And then they tried. It's like, whoa, this is this is like real. And this is her puppy. So this is her it's her parabagel puppy.

SPEAKER_00 27:53

Is that the one that would come around her head?

SPEAKER_02 27:54

Yes, this is the one that would actually go on her neck. Okay, yeah, this is the one that went on her neck, so yeah, yeah. Yeah, she did workarounds, didn't she?

SPEAKER_00 28:04

She did, she really did, and you know, she I want to talk about this too because she understood, and this is something that I say about my one son too, because he has like a 50-something IQ.

IQ Scores Versus Real Life Skills

SPEAKER_00 28:19

Okay, so and he's 13. But he is very aware of what's happening around him, even though this number is on a page. And Liz asked you the question, you know, my when I was 10, it was 75. When I was 13, it was 65. When I was or however she did it, I mean the score went down by 10. It went down by 10 every single time, every time you measured it or that she you wrote it in the book. And Liz asked this question. You know, she was like, How can I be getting dumber with all the things that I'm learning? You know, because meanwhile, you know, she is learning all these things. She cooked without being able to read, like you said. She figured out routes, maps without being able to read a map, handled money and percentages, and remembered route the routes and faces and lyrics, and understood animals, and even could like name all the animal breeds and help kids and developed these workarounds that we talked about. But these numbers were on the page, right? So, what were those IQ tests capturing and what were they completely missing?

SPEAKER_02 29:41

Okay, so Liz at fourth grade, pretty much kids go to abstract reasoning, they're able to start, you know, like make maybes mostly sometimes, right? Liz didn't do maybes mostly sometimes. Those were not words she did. She wanted to know, okay, yet Friday, that's when we're gonna do this. Okay, so I know Friday's gonna be two days from now, right? It's not, or maybe we can do that. Don't get me a maybe. I don't need a maybe. Is it yes or no? You know, that would be a common thing for Liz. Or um you'd say something that was abstract, and I am abstract, so that didn't affect that, was not one of my effects. Um and she she would say, Um, okay, make this make sense in my mind. And she would she would haul off to a doctor, a specialist, and say, make this make sense. And they just, you know, because nobody nobody counters them, right? You know, I I've seen language to the doctor where he's made an accusation and she's just looked at him and and told him exactly what was on her mind about his decision. And and then he would go down the list and until she she she got what she accepted, and she said, Yeah, I accept that. Fine, that's exactly what it is. And now we can talk about it, you know, and but she didn't there were she didn't um the IQ thing was um not understanding abstraction. So, you know, what happens with someone that is concrete operations? We become brilliantly concrete, right? So a three, four, five, 10-year-old, 10-year-old, the concrete operations, and you see the change in a child between 10 and 11 often developmentally, right? But for Liz, that change didn't happen. So if she just continued to progress concretely in a way that made her much more brilliantly concrete than like I am, that made her much more concretely, yeah. She would have been a great detective, you know, just the facts, ma'am. I got it. You know, she could put things together that that uh and and she dreamed of that. She said, Oh mom, I'd love to be a detective. I think I could do a really good job. And and that was one of her one of her dreams that, you know, um, yeah, that that she wasn't able to realize.

SPEAKER_00 31:55

That's really interesting because with my IQ, they would say that, you know, it's like a 130, but then you'd put in working memory and it goes down to like 69 or something like that. It like drops so much. And my executive functioning, my working memory, you know, all the things that make things come to fruition isn't there. It's amazing how we can really come up with these really great ideas and things like that, but to be able to execute it is so difficult. It's really hard. And this is something that, like I'm saying, I really understand it. And I had tremendous difficulty learning traditionally, so I had to figure out ways around my brain. And I'd record things and then listen back and then condense information into notes and rehearse something over and over again to get it, you know, just for a basic test to get a C where everybody else, you know, did half that or let a lot less than that and got an A. So, you know, and I see that in my son as well. But sometimes the answer isn't that we can't. It's you know, we can't do it that way. Right. There is a way, right? So something that takes someone else 10 minutes, you know, it might take us an hour or even longer. That's one of the things that I love so much about Liz's spirit is that she never gave up. So, Jodi, when did you stop trying to make Liz learn the world's way and start asking, what way does Liz's brain know how

Homeschooling That Follows The Brain

SPEAKER_00 33:31

to do? How how how she can do this?

SPEAKER_02 33:33

Yeah, so Liz was 10 and public school was not working. And we had good teachers. I mean, there's there was nothing wrong with the teachers we had, they were exceptional, but but Liz did not function in that classroom. Um, and so she begged and begged and begged to homeschool. And I'm I was running a company. I had 22 employees. I was not interested in homeschooling. Not that I thought it'd be fun to be a stay-at-home mom, but it didn't, it didn't like it wasn't like on my plate. But the farther she went down, and all the work we'd worked with for bringing her up from where she was, which was failure to thrive unattached, um, it really started striking my heart. And I and I really came to the conclusion that I could always rebuild a business, but I could not rebuild a child, you know, that that that whatever I was losing was not going to come together. So so I we she and I made a pact. And the pact was a pinky promise, because we always did pinky promise for real stuff. Okay, that was that I would, I would it would give it 18 months. Maybe she was, yeah, she was about maybe she was nine, nine or ten. And we pinky promised, and I said, I promised that in 18 months if she would work on learning to read and do her very best at school, and she'd come home and just melt down and throw things. I mean, she was a little animal when she came home, but I would shut the business down and I would come home and I would and I would homeschool. So we ended up in 18 months. Um I was able, you know, we we we we set it for April Fool's Day, and that was a joke because her name, birth name was April. And so she had changed it when she was, I think, six, because she couldn't be at she when she found out there were months, she decided she couldn't be April, she had to be Liz because that was her middle name. So that's when she became Liz, and she was never long no longer a month because girls can't be months. Okay, and and and we honored that. We were okay with her. Like she wanted to be Liz, that's fine with us. So we played the April Fools game, and on we start on April 1st, and we had a little book, and the book was a learning disabilities book because they were saying to her she had learning disabilities. And I gave her a red pen. Okay, and I said, and she was good at patterns, so I thought maybe she could find all the disses in the book. So I just wanted to see how her brain thought. So she went through with a red pen and x'ed out every diss. Wherever there was a diss, she xed out, and then when we read pages of the book, we didn't read it with the diss, we read it with the abilities. So it changed the whole concept of the book, right? And and um that's that is how we started, and everything had to be different. You know, I realized she played Suzuki, she played harp, she played Suzuki, and I realized that Suzuki worked for her, the methodology of Suzuki worked. So I studied Suzuki, and then my grandmother was um a child developmentalist back in the 1900s, so her books, her college books came from 17 and 1800s, which was like I know, think about that. So she had handed me her child development books from the 17 and 1800s, which were were brilliant and totally different than what we were doing because it was before the 1920 paradigm shift in medicine. And and so it was all, you know, mother language and um and and touch and and nature and all that kind of thing. And Liz thrived in that method. So I was able to use that information from those years early, and that was before the Montessori or Montessori was too complicated for. We tried it. She had to do, um, she had to go do Frobel, which was from the 1700 and 1800s. Um, you know, the brain gym was too complicated for her. We had to use Orton and earlier things from the 1940s. So once I had something I wanted to work with, I went down to the to the base. I went down to, okay, where did this thought process come from? How did it work? Because that's the way my brain works, right? How did it work? Where was that? Did they miss something? Is there is there a clue there that I can use for her? And um yeah, so the first day of school, I took the alphabet and threw it out and slammed the door. It was like it's not coming here until you, until it can behave itself and be nice for you, you don't get it. And then we went to the um, you know, to the Orton program, Orton Gillingham program, which was brain program of sound, and and then the spaulding program, which was a structured um brain-to-hand program of writing. And you can see in her book, Best I Can Be, her writing was beautiful. Um, she, you know, her script was and and she could do script because from Orton Spaulding, seriously, you can teach um cursive in about 10 minutes to a child with a brain injury.

SPEAKER_00 38:19

Oh my goodness, I didn't know that.

SPEAKER_02 38:21

Yeah, yeah, it's very easy because it just makes common sense. The way they do it makes common sense, and it's like, oh, and then you could read it, right? Because you knew how it how it functioned. Um anyway, that's that's what we did. And I just did that every single place. Where is the mapping program? And the you know, not the mapping tree street programs, but you know, where the world places in the world and yeah, math, math. We use Matthew C, which was Steve Demi's program he did for his child with Down syndrome. Um yeah, I um yeah, we just we just dug. We just dug. And if we didn't have it, we went outside and played, or we got messy, or we I loved that.

SPEAKER_00 39:01

I what and I loved your alphabet where you're just pulling them out of the air and then you like, you know, you're holding all of them and you just throw them out the door, you know. I mean, I just loved it. And she wanted to make sure that you got, you know, two of the letters, whatever they were, or eight.

SPEAKER_02 39:17

Well, one, two, three, four. Four was not a number. Oh, no, that was numbers, right? Yeah, five, six, seven, eight, eight was not a number. So for a long time we couldn't use four and eight in our math because they weren't numbers. So then you have to try to figure out how how do you make that work, right? How do you how do you you take two numbers out of your system? How do you how do you make that work? Two was because she was little enough at two that she hadn't come to that part of concrete intelligence. So being two years old, two, two, two was fine. But by the time she got to be four, four wasn't she was not a number, just like she was not a month.

SPEAKER_00 39:52

That is just so interesting. This is so interesting. And my one son who I homeschool, uh, traditional school, just doesn't work for him. And he's 10 and he has written expressive disorder, and we do everything, voice to text, everything. I mean, and I'm glad that we have those tools. But now that you mentioned uh that program, I'm going to look and see because maybe he can write with that program because his brain just doesn't work that way.

SPEAKER_02 40:19

Yeah. Well, and we don't use clocks anymore. You know, we use digital, right? So the the spaulding or the uh the program is built on a clock.

SPEAKER_00 40:28

Oh, okay.

SPEAKER_02 40:29

So the so the alphabet is very different. So instead of saying A, B, C, D, now try to make cat out of C A T. You can say it as many times as you want, but you're not going to connect those letters. C A T, C A T, C A T. You're not going to, right? But if you if you take the the other approach, which is A A Big K C D, and you say, cat, it's cat, it's cat. You see, you're able to put those letters together because the letters become sounds instead of yeah. So the first letter is a, that's its first name, and then a is its last name, and then T is its and ah is its nickname. So you kind of you always try its first name first and see if it works, and you try the yeah, it was and lots of dramatics, lots of goofing off wild flower dramatics.

SPEAKER_00 41:22

Yeah, you just have to have fun, you have to make it entertaining to keep them engaged. Lots of cooking. We we oh, okay, yeah. I mean, she was really into cooking, and my one son, I mean, all he humor is what gets us through school. It really is. It's humor. I mean, we I just we come up with the goofiest things for him to just get through the day, but it you know, it's just so fun.

The Hagar Vortex And Whole-Body Basics

SPEAKER_00 41:50

So I do want to talk about something else, um, the Hagar vortex. Um Liz Liz wasn't, and this is for all of us, I think, with fetal alcohol. Um, we aren't developing, we aren't developmentally one age. And in one area, she might function close to her chronological age, while in another, she might be years younger. And under stress skills that she could access yesterday might not be available today. So, you know, sometimes those of us who are FASD have to learn the same thing over and over again, and we still can't remember it. So you and Tony Hager began looking at developmental, not as a straight ladder, it's not linear for sure, but more like a vortex. And I think that that's incredibly important because we still ask what level is this person functioning at as though one number can describe an entire human being? And so if you could explain the Hagar vortex and how it changes the question from what level is Liz to where is Liz on the vortex right now.

SPEAKER_02 43:01

At this moment, yeah. And and that's going to be described in the new paradigm coming out, which is going to be called the 4D framework for FSD, which is what Patty's doing with the wildflower brain. So it is real. And we've taken the vortex to the next level, and the vortex is the pioneering foundation, like below it, right? So yeah, I can. The first thing we did was we looked at her biologically or biochemistry. You know, what could we do? Did she breathe? She was a nose, she was not a nose breather, she was a mouth breather. So you get your kids like this, right? And what happens when you're doing is you're doing very shallow breathing in your upper chest. So you're not getting diaphragmatic breathing, you're not getting full oxygen there. And guess where your nose goes? Your nose goes up and over. And what's behind your nose? Your brain. So when you're breathing through your nose, you're oxygenating your brain at the same time, not just getting no, yeah, and filtering your world, right? So there's a lot of things going on. So teaching her to breathe through her nose was a huge thing. And of course, here she is, you know. 13 years old, 12 and a half years old. And I've never noticed. I went through childhood pictures, and all our pictures are, well, I guess, yeah. I mean, you can see pictures later on. She had her mouth closed and she was breathing through her nose. Um, but but you know, what what what did she eat? You know, did she have the right nutrients and the vitamins in there? And were they right? And we ended up with a um a sports doctor, um, clinical nutrition combination that looked at all those things, you know, where was she functionally, right? And how could we enhance her functionality to be the best she could be? What how was her blood running? How was, you know, she had very tiny veins, she was a diva, she was a, you know, you're gonna take her blood, you better go get an ultrasound and a hot pack and and you better be good at it because if not, you were gonna you're in here about it. And um, and a lot of our kids have tiny, tiny, tiny things like our capillaries will be different sizes, or our our veins will be different sizes, or our nervous system. Those, those are the think about it, our littlest stuff gets littler with alcohol, right? Uh, easiest to get rid of.

SPEAKER_03 45:03

Okay.

SPEAKER_02 45:04

Anyway, back to the vortex, because now we've got a base. That's the core of the vortex. The core is hydration, body, you know, how your body is getting to know who who this person is really. Now, once we had that and we were feeding that in both rest and daily and time and environment, and we were looking at the whole thing, you know, what you know, physical, mental, time and environment. What were we doing in those pieces? If we could keep that stable, now we had abilities to start analyzing where developmental she was. And and we would look at like her eyes were at a level um level one. So she was visually seeing like a one-year-old would see. Well, a one-year-old sees differently than a seven-year-old sees, right?

SPEAKER_03 45:48

Yeah.

SPEAKER_02 45:48

Um, auditorily, she was very high. Not not, I mean, she was not an age, but much higher. Um, her her verbal, she was very high because like most of us, um, she had learned that if she could talk well and she could use the right words in the right places, she could keep people off her back. And she could navigate her world with words. Um, and she did. You know, fine motor, her gross motor. Her gross motor was uneven, meaning it was developmentally things were were good at some, and then she was missing them, and then she would had them. And and so nothing was coordinated. And without good gross motor, you have tough fine motor. So, you know, a lot, a lot of this has gone into OT. And um, and that's where I actually started realizing I had FST was because I was speaking on all of this fascinating journey vortex stuff in New York. And the lady researcher, which were they were all trying to prove my work wrong and that it wasn't good, because that's what in education does that, right? They poke hole, they try to poke holes in it, and it's not a negative, it's just that this is new, let's poke holes in it and see what we get. So she puts up the face, the adult face of FSD on the screen in a one of those big screens in a big auditorium. It's my face. There's my face as an example of what a fetal alcohol adult face looks like. And I'm going up next to speak.

SPEAKER_00 47:16

Oh my gosh.

SPEAKER_02 47:17

And I'm like, well, where'd she get that? That's weird. And I didn't have time to think about it, right? I thought about it after, like, but again, wildflower brain, you are, I am. Um, it didn't strike me until later. You know, it's like, oh, and I didn't really know for sure until much many years later on that. Um, anyway, so that's what the vortex was.

SPEAKER_00 47:42

The vortex was I just can't even believe that. Yeah. I'd be like, for one thing, where did you get that? Um well, I knew where they got the face.

SPEAKER_02 47:51

They got the face from NPR because NPR interviewed um raising adults with FSD, and Liz was part of that raising, and I was a parent, and they put a picture of me as a parent on there, and and they didn't look at Liz's face because Liz's face doesn't look like she has FSD at all. Mine did.

SPEAKER_00 48:10

Okay.

SPEAKER_02 48:10

You know, thin upper lip, the eyes, like the nose. You know, yeah.

SPEAKER_00 48:14

Yeah, it's just I have some of that too, with the lip and everything. I yeah, um, it's really interesting that you know how they diagnose, but you are coming up with all these other ways to see how the brain works and everything. And I'm wondering, because we have a fetal alcohol center not too far away from us, and all my kids go there, but I don't hear them talk about any of this, you know. I I've a lot of it, some of it, but not a lot of the things that you're talking about. I'm wondering when some of these bigger hospitals and things like that will get on board with all of it.

SPEAKER_02 48:57

Yeah, I hope so. I handed uh Liz's book and the iridescent spoon that we're talking about. I handed the last book she wrote, which was published in 2017. I think it was 2000, 2000, yeah, it was 17. Um, I handed that to um our my our primary doctor, my husband's primary doctor, and and um he was excited to read it, you know. And I did I did share with him which hospitals, but because nothing is written in there. You you don't have a clue. Any of the doctor any of the hospitals, any of the you don't have a clue where where it was. And and I actually moved a few of the timelines around just more I I changed it to seasons and processes because that way there was no structure to decide, oh, that's that hospital. And it was more like this is the process, this is what happened through that process. And in some cases, it might have been two or three hospitals or multiple providers.

SPEAKER_03 49:53

Right, right.

SPEAKER_02 49:54

It needed to be mixed up. There's no fingers pointed. Everybody did everybody did the best they could do under the under very complicated circumstances.

SPEAKER_00 50:03

It was rough, it for sure was rough. And we not knowing.

SPEAKER_02 50:06

Not knowing.

SPEAKER_00 50:07

Yeah, yeah. I mean, we know more now all the time. So I pray that eventually we get to the point where it's just gonna be an everyday thing and they just know they and they they know how. So we can just pray for that for people that are coming up after us, yeah, um, and after Liz, and even after my

Curiosity Risk And A Better “No”

SPEAKER_00 50:30

kids. But you called Liz, which I know this brain very well, you called her a one girl adventure reel. Uh, she went up the down escalator, took the wrong subway, and even climbed into a chimney because she wanted to see where the ladder went. So, you know, you wrote that if something was dangerous, exciting, or forbidden, Liz seemed to show up first. And I have a couple of those. And I want to understand it. Maybe you understand. Did you come to understand that the this attraction to danger and novelty or the forbidden as part of Liz's FESD? How do executive functioning and frontal lobe development affect that ability to stop and think maybe I shouldn't do this?

SPEAKER_02 51:27

So here's where I came to. Um We always said, be creative, right? Be creative. If you can't figure it out, get curious, get curious. And we did that when she first went to dialysis, honey. Don't be scared, don't be worried, get curious. Find out everything you can. You know, so she started observing how the machines worked, how the people reacted, um, slide remark, snide remarks, people would say, you know, she was picking up the details, right? And using them. I think, and she grew up like that from the time she was little. You know, we we started with she was three and we were playing the game, I'm thinking of something. And you start with, is it God made or man-made? And and that that's and so you categorize the whole world like that. Well, it's God-made. Okay, so now we know it's nature or something, right? Or it's man-made. So I think that curiosity transferred to the part of the impulsivity because that curiosity is I wonder how that works. And and there was no, there was no breaks, right? Like I want to get, I want to get on that train and go home, and the trains are coming, not realizing there's more than one train and there's a time schedule, and I'm in Stockholm, and off I go to to um Lynchoping, and we're going to Vesteros. It's not gonna work, right? We're we're going in the, you know, thank God we were younger and Carl was um yeah, Superman and could pull her off the train before she she went someplace. We didn't want her to go with the language, she didn't know how to speak, you know. Um, yeah, and going running up and down escalator. That that's a curiosity. I wonder what happens. I wonder if I can run up to the top and beat that escalator going down, or you know, what what is that ladder in there? Oh, there's a ladder in there. Not thinking this is a chimney that has fires in it and it is dirty. And I'm dressed in my sweet little pink outfit that is going on in airplanes shortly. And as soon as you turn your back and she's gone, where could a she where could she go? I mean, we are in there. Did somebody take her? Where did she go? Mom, I'm up here. She's in the wall. Oh no, she's in the wall. You know, there she was up in the gym. Yeah, yeah. Luckily, oh my gosh. Luckily, um, we were flying and um our in a small airplane, and my husband's friend was flying in a small airplane. He said, I'm really too tired. Can I just need to get a hotel and we need to sleep? So we said, okay. And we went to a goofy movie, you know, a Disney goofy movie. We figured that was about appropriate for that day after she'd done all the crazy stuff she could do. So yeah, you never know. We just took Liz with Liz was part of our our adventure. She just made it brighter, sparklier, crazier.

SPEAKER_00 54:06

I am wondering though, because I have one that um how do you make it where their entire life is about it's not about no? You don't just keep saying no, no. I mean, I guess if it's unsafe, you have to say no. If it's, you know, like if it's gonna hurt somebody else or yourself, but then other than that, it's a free ride. Go for it. I don't know.

SPEAKER_02 54:35

So so we had a couple questions, like like um um instead of saying no, you'd say, is there another way to do that? Um what do you think about that? You know, so they we didn't use why. Why sent your brain into a house of mirrors?

SPEAKER_00 54:51

And you can't ask why. I don't like why questions. Don't ask me why.

SPEAKER_02 54:56

There is no there is no answer. So that was one of them. The other thing we did is we had a truth table, which was made everything different for our home than most homes, and that is that if a child brought their mistake truth, that we were going to catch them and they were gonna get in big trouble. If they brought that to the dining room table and called a truth council with dad and mom, we would um we would let them solve the problem, not us. And there would be no discipline. Now they could discipline themselves, and sometimes they were a lot harsher than we would have been, but but they got to discipline themselves, not us. And we we were just the council. And okay, um, and that made a huge difference because it took it took the having being scared in confabulation down a notch. And and confabulation isn't lying, it's just not having all the facts, right? The stories get bigger. The that they're like as Anne Yurchek says, they're running the video camera, but they don't see themselves in the environment. So everybody else did it, but they didn't. Well, not because they had the camera, they were taking the pictures. Um yeah, so the truth truth table made a huge difference for us. It um it it just took it away. And and you know, it was used a few times.

SPEAKER_00 56:11

I really like that. I really like that a lot, and it allowed her to think and make her own choices, which I also think that that's amazing.

Mo Angels And A $10,000 Win

SPEAKER_00 56:22

Um you know, one of the things that she did, which I loved, was make they she along with some other girls did Mo Angels. And I thought, you know, the songs that they came up with, I mean, they sang about foster care and prenatal alcohol exposure and relationships, worth, faith, they performed at the Minnesota Capitol, made blankets for babies and distributed sensory awareness kits that we talked about, and copies of Liz's book. So I love this because here was someone who could struggle with a conventional conventional assignment, yet she could create something so meaningful. So tell us about Mo Angels and what happened when Liz was given an opportunity built around what she could do instead of everything she couldn't.

SPEAKER_02 57:16

Yeah. So she this she sent the um she sent the the sensory kit off to Tiger Woods, and they said and I got back from Australia and um the house was a disaster because it was 911. Um, and our house was the house that, of course, we were the safe house. So when the world fell apart, everybody came to our house. Only I was stuck in Australia for two weeks and couldn't get out, and my husband was flying to Alaska and couldn't get out. So here we had this little overlap of time that our neighbor was gonna take care of, and it extended to two weeks. And and so when I came home, our house was just like it was, you know, it was like someplace you weren't gonna walk into, but it was a place that the kids had found um felt safety in, right? I guess that would be the word they felt safe and and they were they were okay there. Um, but our house wasn't. So I am I'm tearing out the carpet and tearing off the wallpaper in her room and looking at trying to repair a three-foot hole that somebody had gone through because they'd fallen backwards and yeah, it was that kind of thing, right? And and her dad's still stuck in Alaska, right? So it's like, oh, I gotta get this done before he comes home. Oh my goodness. And and the world had just changed. 911 was hard for everybody. And uh and and uh she gets a phone call. And of course, we've got dial phone at that point, no cell phones. She runs to the phone, it's just hanging on the wall, and it's Tiger Woods competition, first place. And usually they would promote it and make a big deal about it, but with 911 and it being late, they you know, it took more time than what they thought to put it out. Um they said, you you got $10,000 check coming and you've got to spend it in three months because it's got to be gone by the end of the year. So all of a sudden, this 13-year-old, 14-year-old has $10,000.