A Mother’s Story Of FASD Advocacy And A Daughter’s Spark part 2

Curiosity That Outruns Safety

SPEAKER_01 0:22

You called Liz, which I know this brain very well, you called her a one-girl adventure reel. 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. Did you come to understand that the this attraction to danger and novelty or the forbidden? How do executive functioning and frontal lobe development affect that ability to stop and think maybe I shouldn't do this?

SPEAKER_02 1:10

So here's where I came to. 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, snide remarks people would say, you know, she was picking up the details, right? And using them. 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? 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 Lynchoping, and we're going to Vesteros. It's not going to work, right? We're we're going in the, you know, thank God we were younger and Carl was 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? 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 with there. Did somebody take her? Where does she go? Mom, I'm up here. She's in the wall. Oh no, she's in the wall. You know, that she was up in the yeah, you never know. We just took Liz with Liz was part of our our adventure. She just made it brighter, sparklier, crazier.

Parenting Tools Beyond Constant No

SPEAKER_01 3:11

I am wondering though, 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.

SPEAKER_02 3:33

I don't know. 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 center brain into a house of mirrors?

SPEAKER_01 3:47

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

SPEAKER_02 3:52

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, because they had the camera, they were taking the pictures. 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_01 5:04

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 Strength-Based Success

SPEAKER_01 5:12

You know, one of the things that she did, which I loved, was make 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 6:03

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 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'm 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 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. 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 that I can't use, she can't use. We got to figure out how to make this work. And so she makes a whole bunch of her sensory kits, right? She prints the best I can be. She prints, I don't remember how many copies, but enough. And she makes this deal like, okay, mom, if I'm buying these, I get all the profit. Yeah, that's right. That's the way business works. You get, you know. So she had her little stack of books, her little stack of things. And then she says, you know what? I want to do, I want to start a girl group. I want to start a girl group and I want to make songs and write songs and and dance and perform. I'm like, oh well, it's her money, right? It's her money, it's not mine. And then what are we gonna do? We never got $10,000 drop in our lap. I mean, I, you know, you know, yeah, I worked to find a way to pay the electric bill and months. So this was not like normal. Um, and so she she did. They they found a producer, they found a producer with a studio that was a dad that pretty much just donated, and and um they they cut 12 12 songs on a CD. They cut and they actually got all the way to the AMC uh Chicago. They got brought to Chicago to get a deal, right? That deal would they these were all special kids. These were all kids with neurodiversity. These weren't kids that I mean, whoever would have these four kids in their house at one time, other mothers would have shaken shook their heads. So, you know, but they were busy, they were writing songs and changing the world and believed in believed that they could do it. And and that I think was that's yeah, and that's everything. Yeah, and they did. And and meanwhile, they they um they stayed focused on something that wasn't uh just boys. I mean, there were a lot of boys stuff in their heads too, but you know, they they at least we at least had a little reprieve because there was something to do. They weren't sporty girls, they weren't gonna play sports, they weren't gonna be on debate, although all of them could have been. Yeah, this was their deal, and they did it, and they did it for a number of years. And you know, if they got a deal, they would have been destroyed. They would have been the season they did it was the right season. Taking it to the next step, they would have been eaten up, chewed up, spit out, and used. And I wasn't gonna let my little girls, they weren't little girls, my young ladies have that opportunity to get spit up and eaten.

SPEAKER_01 10:00

So

When Adult Systems Replace Supports

SPEAKER_01 10:01

well, you're touching on something which is in your book, which it is really important that transition from child to independent adult. And as she grew, and now we have this person who is getting ready to turn 18. And at 17, Liz was a child with special needs, and there were accommodations and supports and adults helping her navigate the world, but then 18 hits, and her brain changed. I mean, everything changed, but her brain didn't, you know. So suddenly schools and doctors and agencies and social security and the law were dealing with an adult expected to manage money. You manage transportation, you do the paperwork and appointments and work and medical decisions and emotional regulation, often with you know, not the supports and behaviors once understood as meltdowns or shutdowns, now could be labeled as non-compliance, poor attitude, lack of motivation, non-adherence.

SPEAKER_02 11:08

So episodes.

SPEAKER_01 11:10

Yeah. So that's hard for me to understand because she's still this same person. I mean, I understand it because this is what happened to me, but somebody reading, same person at 17, she's this. Now she's 18, same brain. I don't understand how this can happen and why the system works this way. I don't get it.

SPEAKER_02 11:34

She she in in the braided cord, Tough Times In and Out, she wrote that. And in that also, we wrote our case notes, and you know, so you could see you could see the arguments, you could see the opposing sides. And the way we wrote it was that all of her type is written big and bold and and easy to read. And then all the case notes and all the my mom notes and doctor's notes, those are all tiny or legal notes. Those are tiny. So that someone with FSD could read just the the easy part, right? And ignore all the small print, which we do anyway, and get and glean from it where what happened to Liz in a good in a good understanding without the arguments and all the fight that was going on below the system. When she wanted to put that out, I was like, oh my heart. But then I thought, you know what? Her journey, because of fascinating journey, and because of best I can be, we were the hope. And Liz went into adult transition without any, there weren't any things in place, right?

Alcohol As Comfort And Risk

SPEAKER_02 12:33

And because that was the time, that was the time. You know, we didn't have anything in place. We just floundered and did whatever we did, and so did Patty. But Lizzie, Lizzie felt harder, felt way harder. She, the first time she drank, um, the alcohol tasted like milk because her mom pumped her breasts to bring it to the foster home to give her milk so that she because she was failure to thrive, so they were helping the baby, only the milk had alcohol in it, and like we didn't know it. But when so when she started drinking, this was like comfort food for her, right? It was like for me eating spaghetti or pasta, I love pasta and spaghetti because it was a time when my parents were when we had spaghetti or pasta, things were calm in my home. I don't know why. It just worked with that meal. But for her, alcohol became that. And so for three years she fought it and she drank a liter of vodka a day. So in the mom that was running around behind the scenes, nine apartments, boys, uh, and I'm not saying boys are bad. I'm just saying that, you know, she'd put herself in very precarious positions and things that I learned later that were like, you know, would come into this vestibule and she go, and I'd like she's I can't go in there. I go, why? Well, there was a very significant tragic thing why she couldn't go into that stairs system in that place in the city. And I'm like, you know, so your heart was broken over and over again as you started unraveling some of this stuff that she went through. We hoped that that transition, which was so hard, and and we were there, but she didn't want us there. She wanted us, you know, when we went, we took a vacation, we hired to take care of our house, a Marine to take care of the dogs, to stay in our house. We hired a person to stay in our house to keep her and her friends out.

SPEAKER_01 14:14

Okay.

SPEAKER_02 14:15

Not because we didn't love her, but because we didn't trust what could happen without having somebody strong standing guard at the doorpost. We we put an army in our house. I get the eating disorders and I get the alcohol treatment programs that don't work, and I get the eating disorder program that does it wrong, and I get the juvenile or the adult justice system that doesn't understand, understand it. Not because um, and and then when we got through all of that and she was stable, we bought the house next door.

The House Next Door And Sobriety

SPEAKER_02 14:46

Yes, and and that it was 2008, and the foreclosure had happened, and we thought, let's just put our savings in there, let's put everything we have in there, and let's see if we could do it. And believe me, the professionals thought we were absolutely nuts. She should have gone in a group home. We're absolutely crazy. And we told her, look, you want to live in the house, you want us to be helpful helpful for you. There's no alcohol, there's no drugs. And if you keep that, you keep the house. If you do that, you know, and she did. Yes, and and she did it without, and and she got rid of her boyfriend who actually came back later and was was the guy that actually cared took care of her. But she she did it. She did, and she did three years as a woman, um, living next to us, growing, getting stronger. That's where Liz's Kitchen came to play, and you know, some writing the book, the thinking people needed to know about um her her transition journey and um speaking, she was speaking and going with me, and she was a friend and she was a neighbor, and she was a she was another woman. You know, that's where you know we we saw that. We saw that. And then and then when the illnesses started, she'd crash and then she'd rally back up, and then she'd crash and she'd rally back up until there just was no more, there was no more crashing.

SPEAKER_01 16:01

Yeah, I mean, she did a really good job actually of handling her very complex body. Yeah, and she maintained sobriety for over 15 years. She did. So, I mean, that she deserves a lot of credit. And, you know, some of it is natural when we leave our parents, when they our kids leave us, you know, some of it is natural because they want that autonomy, but it's also really hard because we know that they're not more than maybe emotionally still a child. And here they are trying to do these adult responsibilities. So it's such it's so hard for us as parents. And I've got two that I know it's gonna be coming. And one is already, it's it's here, even though um that child is still very young. They think that they are already an adult, and it's really interesting to navigate and balance because you know they're not making good choices, but they think that they're making good choices, but you have to figure out how to allow them and let go. It's hard.

SPEAKER_02 17:14

Yeah, it is hard. It is hard. It's not um, you have to realize you have to, I I had to give it to the Lord. I mean, I you do. You know, I'm a person of faith, and you know that you see it's I don't hide that in the book. I've never hit it in any of our books, and I've been criticized that you know, look, Jod, if you would not keep putting God into your work, you would you would probably sell a lot more books. And you know what? I can't take that out of me. You know, I can't. I can't do it, you know. Um, if if you want to read my books, you're gonna find them there because it's it's how I get through my day. And and Liz too, she gets through she got through her day from from faith, not religious faith. I mean, I mean, I remember when she felt ostracized by the church and she came back in wearing roller skates to see, will you accept me if I wear roller skates? And she roller skated to the church. That's the kind of kid she was, right? Yeah.

SPEAKER_01 18:00

I love it. I actually love it. I mean, the sparkliness, how she took on even the sickest of the sickest days, you know, where she went and got a really vibrant wig and uh double eyelashes, three-quarters of an inch thick because they told her she couldn't wear a hat for fluorescent lights.

SPEAKER_02 18:17

Yeah, and a bangs. The bangs would go right out to here, you know, and kind of like see you. Yeah, you can't wear sunglasses, you're gonna be under these fluorescent lights and you're gonna sit still. So she goes to the beauty store. Yeah, it's like, and and of course, being beauty, she's not one. I I mean, I'm earth bomb. Okay, so I'm you're gonna find me digging in the garden. You're gonna find her in the bathroom in the sink putting on makeup, just who we were, you know, two different, very different women. But but again, women that respected and loved each other, even though we made fun, you know, she'd make fun of me.

SPEAKER_01 18:50

Well, and she did it her own way. There is no doubt

Liz’s Kitchen Blocked By Benefits

SPEAKER_01 18:54

about that. And one of the things that I really was mad about in the book was um Liz's kitchen, because cooking made simple for people with disabilities, and it was brilliant because I can't execute anything in the kitchen except the microwave. And, you know, she could cook and create, make videos, had developed ways around the things that her brain couldn't do conventionally in this way as well. And when I read it, I was actually, you know, I looked it up. I started, okay, Liz's kitchen. And that was before I even knew that it didn't happen. I was like, okay, I'm gonna join Liz's kitchen because I know that this will help me, only to find out that it didn't happen because of the system.

SPEAKER_03 19:39

Yeah.

SPEAKER_01 19:40

And it's not okay that she was afraid that if they knew that she could do these things, that they would say, sorry, you can't have the helps that you need. That's what the system does. So, how does our disability system take the things that we can be successful at with helps, by the way, with helps, not on our own. Right. I mean, none of that was done on her own. And the same with me, with my podcast, with everything that I do. I mean, it's done with helps and tools. And uh it takes a long time to do these things. What takes somebody, like I said earlier, maybe a half an hour takes me two hours, you know. I mean, that's not the kind of place that would hire somebody like me, you know? And even when I worked at the school for kids with autism, the boss knew that I had autism and FASD on top of working there. She knew all the things. So, you know, there were a lot of accommodations. And a lot of places won't do that. It was really sad to find out because she was becoming so successful in those things she had to hold up because of the system.

SPEAKER_02 20:53

Yeah, it was sad. It was sad for all of us, right? It was sad for the four companies, five companies that backed her in it. You know, the ones that because, you know, we had a photographer that gave us a studio on when he wasn't working on the weekends. We had we had the state, the state giving her a tiny grant that we use the money very carefully with to get the the camera and the, and we were not talking a lot of money, but we're talking enough money that was a catalyst to do it, invest in white dishes and black dishes so we could plate nicely and you know, clean pots and pans, like you know, I don't know. Your pots and pans, but mine, mine look look okay, but they don't look like you're gonna put them on a video. And you know, all of those little things, you know, the microphones, and you know, um were very frugal and very careful with it. But we and we had documented everything so there was nothing like if somebody came in, they would see that we had been very careful. And she had her logos and her graphics and her website, and you know, all of that was ready to go. So when when that assessment happened and the what was said to her was said, and you have to read the book to find out what has happened, um when that when that happened. And all of a sudden she wasn't interested in Liz Kitchen, which she was on fire for before. I didn't put it together until years later when she finally told me what had happened and why. And I was just, you know, it's just like, yeah. So my that iridescent spoon, all those things we never said, we said them because you know, obviously we held back a lot, but but the things that were valuable and important that turn people's heads around and say, wait a second, this is wrong. And because and and and if it changes one heart, if it changes one person that signs those check boxes, one person that makes that decision, then it's given an opportunity. That that would have how many people would Liz's Kitchen helped? It would have helped everyone with Alzheimer's, everyone with dementia. It would have allowed them to stay at home. It allowed all of anybody that has any kind of brain injury to cook. And the technology was there finally to do it correctly and easily, you know, and we would have had things free online and people could have, you know, we had all of our products used. And yeah. I still it's a shame. I still have the videos. And I'm thinking I I have my own website, which is jodiculp.com, and maybe I should put a section on Liz and just if people are interested in digging deeper, putting some of those sparkles in there because there were I've got cool videos and you know, and at that point she was wearing really she'd wear a wig because then she didn't have to worry about her hair for the for the show. But it was it was very classic and very cute. And and I don't mean classic because Liz was classic, her own, she was her own classy chick, but it was it was something that was going to go across the borders of all humanity with her, you know. It wasn't, you know, in the end, she got more and more loud as she got sicker and sicker to protect herself. And I get it, and she wanted joy, you know, her wig her wig making. Whoever thought she would be able to make a wig when she couldn't thread a needle. Well, that didn't take long. She was now making them in two hours and dyeing them and stitching them. And yeah, the first but always it was mom, will you make this for me and show and figure out how to do it so you can teach me? So that meant, you know, I became the rope. I became the wig maker. Um, the first wig I sewed was 14 hours. She ended up getting it down to two. Yeah, and all of her hair, all of her gorgeous dyed hair, which was vague and and gorgeous, gorgeous, all went to a children's cancer hair making place for wig. I just hope, I just hope a lot of kids are running around with all those little bright sparkly colors that you know, even if it's just a piece, right? But something that says I'm special.

SPEAKER_01 24:39

She was always giving.

SPEAKER_02 24:41

Yes, always giving.

SPEAKER_01 24:42

That's you know, and what you're and by the way, I would get that video. I would I would get the videos on your website and watch them. So you might want to think about that.

SPEAKER_02 24:53

I'll pass the kids that were on them. I mean, the parents gave me permission, but the kids are now adults. But I I they're all moms and dads. No, I would guess they would say go, go for it.

SPEAKER_01 25:02

Yeah, well, uh like I said, I'm not really the the best cook, so anything would uh help.

SPEAKER_02 25:07

Well, let's see, there's french fries on there and homemade. There's just some things that are and they're all done in a way that is um easy, you know, like you can't make easy. Yeah, and that was my job finding the best, easiest, simplest way to make it so that she could then explain

Cognitive Translators And External Brains

SPEAKER_02 25:23

it.

SPEAKER_01 25:23

You were her, what you referred to as cognitive translator, which I think is brilliant because I always refer to my external brains. One of my friends lives here and helps me with everything. And she 100%, everywhere I go, I have an external brain. And you call them, like you said, uh cognitive translator. And it really helps us get through our day. And you also describe this as, you know, an attuned support, someone who understands sensory and trauma triggers and helps translate complicated information, allows enough processing time, and it recognizes that a person who looks quiet and compliant may actually be completely overwhelmed. So I want to make this practical. What does attuned support actually look like in doctor's offices and hospitals and workplaces and government agencies? And how do we become someone's external brain when they need it without taking away their voice or making decisions for them?

SPEAKER_02 26:28

Okay, so I'll give you an example when I went to court, and this was with another gentleman, he was representing himself. It wasn't a big deal, but you know, I came in and they said, Who are you? I said, I am I'm as cognitive translator. Well, what is that and why are you here and I don't get it? And I said, Well, it's very simple. If if you were deaf, I would I would sign for you. And if you were blind, I would help you see what you need to see that you may not pick up because you don't have vision activity. Um, and he said, Well, are you gonna talk for him? I said, I am only going to talk to him for him when he is not understanding. How will you know that? How do I know you're gonna say you know the right things? And I said, I know his body language, I know his triggers, I will be able to know when he's overwhelmed, and I will be able to speak for him. And I will also ask his permission before I speak, or he will ask me to speak for him. And and of course, the thing is, is in a translation piece, if I was if I was speaking Swedish and you were speaking English, again, if you understood English to such a point, I wouldn't translate for you until you needed it. You know, I'm I'm if if you were a beginning language, I'd let you or beginning Spanish, I'd let you do Spanish, do it, enjoy it, figure it out, make your own friendships. But if you got to a point where somebody was speaking higher level Spanish than and they're coming over your head or they're starting to play with you, then that's my job to step in and say, Whoa, hey, do you know what that means? Oh, um, I think so. Well, let me explain it, and then I will I will go to the the judge and to the person and I say, This is what he said, and this is what it means, Your Honor. Is that exactly what it was? Yes, it is. I did the same thing with doctors. I did the same thing with the doctor, a dot and and Lizzie got even better at it because she'd say, Okay, make this make sense. Right, just step right through it, right? But um, and and I did, and you know, there's two different languages there. There's the judicial language, the medical language, the social welfare language, the financial language, the world language. And then there's the wildflowers that run around and don't understand any of those languages and and have learned to camouflage and mask in order to stay safe and get themselves into huge trouble. Or in in Zach's case, in the book that the books, the the novels I've written, the neurotypical world thought they were being clear and the other person thought they were joking, or you know, back and forth kind of thing. It's just misinterpreted.

SPEAKER_01 28:57

Another area where this happens is in the education system because like I had to sit at the tables, which I don't now I only do virtual, and they all know that I will only come to all of these IEP meetings where there's other five, there's five educators sitting there all staring at me and thinking, you know, that I'm going to be able to come up with answers and think with all the noises and lights and you know, all these people staring at me. It's not happening. So I'm very thankful for me being able to show up with virtual meetings and also with having um I've had advocates at the beginning with all of my kids, but now I understand the language, but they can talk over your heads and then just tell you to sign a paper, you know.

SPEAKER_02 29:43

So they never give you time just to read it.

SPEAKER_01 29:46

Right. Yes, very true. But and not understanding that me as a parent, I do have a say at the table, you know, that I can't say no, I don't want to sign this. No, I don't agree with what's happening with my child. I want this to be different or whatever, you know. It's and being a parent of special needs with and I am special needs is difficult. So that is another place where I think that we could do a lot better. And one of the places also is that it made me so upset in the book to even read these stories about Liz and where here she was medically compromised, and her slowed responses or inability to respond as expected were interpreted by police as noncompliance,

When Misunderstanding Turns Dangerous

SPEAKER_01 30:38

intoxication, or resistance. And sometimes force was used, and that's not okay. There was an incident with the potassium when an officer saw a bottle and a syringe and assumed that something very different was happening until an EMT recognized it and said, you know, no, that really is potassium. And also a situation, I think, in the hospital where uh Liz needed medication and she wanted to take her pills and, you know, security is there. It's like, wait a second, you know, this is where misunderstanding neurodivergence stops being merely frustrating and becomes dangerous. It becomes life or death. It does. So police, EMTs, hospital staff, emergency departments need to understand about someone whose brain may not be able to immediately process commands or respond the way that they expect during a medical sensory or neurological crisis. I mean, what needs to happen here?

SPEAKER_02 31:43

Experience is the best, you know. If you if you've got a family member um that has a neurodivergence, it's really good to know them. I mean, not like from the outside, but but do some fun stuff with them. You know, go uh go what do they like? They like to go to the ball game, take them to the ball game. If they go crazy because they're at the ball game and there's too much stimulus, get used to them, you know. I I do dog training, right? And and I've got I if one of my kids is stacking, right? Things stack and stack and stack. It can be a good thing, a bad thing, a good thing, a bad thing, a good, good, good, good. Uh-oh, I'm overloaded, right? And now you've got a meltdown in a store with a child, with a dog, and and my store is just kind of used to it now. And and there I am sitting in the vestibule in with with people coming in and out of the store. And and I'm like, no, we're not gonna move until we're done here. We're gonna, you know, we're gonna just get get through it. And people don't understand it until you experience it. And and usually what happens is the people want to do this. They want to just stop it, right? Stop it, just stop going out, just stop it. I'm tired of it. You know, it's like, sorry. In that situation where the security came with the medication problem, I got written up as the most an extremely passive mother. I am not an extremely passive mother.

SPEAKER_00 32:57

No, no, not at all.

SPEAKER_02 32:59

But I will tell you, I understand neurodivergence to such a point that I know, just as I do with working with animals, is that my energy in my body makes a difference on how that higher energy is going to come be able to come down or to manage. And they I have to be that trusting place. I have to be that that that pole, that, that's that tree, that whatever it is that's stable enough that that person can come down and hang on to. And maybe not hang on to with their body, but hang on to with their mind, hang on to with even a thought, so that I can get in there and work with them. But if I bring my energy into it and not my love and not my breath, which is slowed down, and not the whole part of my body, my blood pressure down, everything, I can't communicate with their body to help them get there. And so when the nurses would come in or the security, could I have escalated it? Oh, yeah, I could have, because we were playing games. Like I was saying, well, maybe I should just put on my pajamas and swing from the from the way or lift, you know, and goofing off like trying to trying to put some humor into the this horrible situation. It wasn't gonna help. It wasn't, it was going to do exactly what it didn't need to do. And I really wanted to stay in the general ward. I didn't want to go to the psych ward. So people don't understand when parents try to, if you mirror the person instead of getting them to mirror you, it's not going to work as well. You know, so we're the ones that have to stand that that ground, you know. We can go in our car and cry and scream and kick all we want after we get out of the parking lot, find another empty parking place, but doesn't work if you're in the room with them.

SPEAKER_01 34:38

Yeah, I mean, there's a whole part of this where the diagnosis enters the room first. And it wasn't okay the way that they would just see the diagnosis. The professionals saw FASD or trauma or psychiatric labels and began interpreting new physical symptoms through those diagnoses. And eventually, thankfully, uh neurologists took Liz's neurological symptoms seriously and documented what was actually happening and didn't allow an early conversion disorder diagnosis to end the investigation. But I mean, you had to fight and fight and fight to get people to listen. And Liz required extremely serious neurological interventions. So, you know, that really struck me because once a diagnosis enters the room first, everything that that person says can start being filtered through it. And how much damage can happen when an existing diagnosis becomes the explanation for everything?

The Diagnosis Enters The Room First

SPEAKER_01 35:48

And did you feel that there were times when doctors stopped listening to Liz because they saw the FS FESD before they saw her?

SPEAKER_02 35:57

Yeah, yeah, there were there were a lot of a lot of times like that. We found we found a pediatric. If it was if the person had pediatrics in their background and were now in the adult move movement, we saw better, um, better care, which was really good. We saw a lot of some professionals just had no clue, and I would, I would have to take them out into the hall and have a discussion, you know. So they got to see the other side of Jody, not the side that Liz was seeing, because for Liz, I was keeping that room calm. In fact, doctors would actually come into our room or nurses and just sit there just to say, I need a break right now. And and and this room is the quiet, this is just this room has a whole different energy to it. Yeah, it did have a different energy to it. And it was intentional. And later on, as I got better at their language, as I got better at understanding medicine and how it worked and how the system worked. And of course, you do that after a number of years. I'd had doctors looking at me and watching, and then they'd say, What do you do? And because it'd see me, I do body work. I do body work on Liz because Liz needed, you know, body work to calm, body work to move, you know, to move her blood, but she needed body work, and it took a long time to get acceptance that I was able to touch her body, that I could, you know, that I could touch her stomach and I could touch her head. I was limited to like the arms and the legs and the feet, and I and and I had and the hands. And so I was that what what would you do then? You go into reflexology. What can I do with that? If if that's all I have, then that's all I learned. And then, you know, with the lymph nodes, you know, if that's all I had, then that's all I learned. And I but eventually I got whole body access, which was which was really brilliant and made a huge difference. And in fact, one doctor said, you know what the problem with Liz is? And I said, No, she said, You, you are keeping her alive. And and um Oh yeah, you know, it's like I see he said, You're not gonna give up, are you? I said, Not gonna give up. No, not gonna give up.

SPEAKER_01 37:59

No, you felt that through your whole entire book. And I mean, it went beyond fighting for her, like you said, you were doing everything for her. I mean, after a while, even like rubbing her feet or doing whatever you needed to to just keep her, and maybe some of it was, you know, keeping her thriving, like she had been doing all of her life, from failure to thrive as a baby all the way till now, you were still trying to keep her thriving. One of the words it compliance, compliance, compliance, everything was, and she was worried about not being compliant. She was compliant. She was, she was compliant with every single thing that they said. But you're right, I mean, you had to keep speaking up for her. But one of the most brilliant things about the medical world that you discovered that I kind of mentioned at the beginning, was that not all medicines are the same, even though it says it on the

Medication Fillers And Genetic Testing

SPEAKER_01 38:55

bottle. And you uncovered this, you know. I mean, you took it to the pharmacist and you said, Look, even though these say exactly the same thing, they are not the same thing. You've got these fillers and these dyes and these all these things in it that are actually creating more problems within her.

SPEAKER_02 39:14

Yes, yes, and that is true. That was there were a couple of good things that I would like the audience to know. One is um is different manufacturers have to have different recipes. And so even though it has the main ingredient that we're using, like it could be um a blood pressure medicine, and this is what you're gonna use, right? And it wasn't in that case for her, but um it it that should work, right? This was, I think it was for diabetes, but anyway, what it should work, but there's different things in it. So in in this one case, one of them had what's called an excipient, which is means it lasts for a longer time, which means the the medication doesn't just automatically dissolve, it takes a lot longer to do that. Now, the place you can find that is on the FDA. So you can go to the FDA, put in the drugs, put in the manufacturer, and you can see what's in there, right? This is before AI. So, so um, and don't trust AI on all this stuff. You might find it, you're gonna find the route, you're gonna find the path, but think of AI as your $6 an hour employee you're sending to the library. And and if you use it like that, then you can do the research from what they give you, but realize it's not all accurate. And it also hallucinates. So what I'm saying is that if it comes from A company, it may not have B and C in it. And if it comes from B company, it might have D and E in it instead. And B and E might be something that she's allergic to or she reacts paradoxically, which means the opposite. And we found a lot of opposition in medication. So they'd give something to put her to sleep and it would jazz her up and make her dance. It would become a stimulant instead of a, you know, to be a thing to go to sleep. So that was that was a really hard one. The other thing I really recommend is getting a medical genetic test. Um, we did not know we did not know. Um, we thought Northern European, although her skin color and her behavior, a lot of things just didn't, she really played more into um international kind of kid in a lot of ways. When we got her genetic piece, she had told me in detox one day that she met her birth father. And it wasn't the birth father that was the birth father we were told on the on the information we had. Yeah, and she told me what he looked like, and she told me about him, and she told me about her mom, and she told me about other things. Her mannerisms were very much like her birth mother. So people that knew her birth mother in the urban area recognized her because of her mannerisms.

SPEAKER_00 41:47

That's crazy.

SPEAKER_02 41:48

And and so this guy recognized her and told her, okay, when we got the genetic testing for medicine, her background, her genetics looked like she was a kid from the porta calls around the world. I mean, we're talking everything from Indonesia to Peru, Colombia, um, China, Vietnam, um uh Mexico, Puerto Rico, you know, again, some Northern Europeans, some Russians, some, you know. So this kid was a world's kid. You know, she was she was what she was saying she was.

SPEAKER_00 42:22

Yeah.

SPEAKER_02 42:23

But it also explained why, because of some of the genetics in her body, why some of the drugs work paradoxically, because some different bodies are made different.

SPEAKER_01 42:31

That's really interesting. We did have the genetic test with my kids. We're gonna have another one because it changes over time and their bodies change over time, and the way that they metabolize, even, you know, it not all medicines, even though it says what it does, doesn't mean it does it for your child, or you know. So, um, yeah, we are in the process of doing another one. Now, I want to ask you though, iridescent spoons.

Why The Iridescent Spoon Matters

SPEAKER_02 42:58

Yes.

SPEAKER_01 42:58

We haven't spent any time talking about the title yet, really. People living with chronic illness often know spoon theory, and you begin the day with a limited amount of energy, and everything you do costs you a spoon. But Liz had an iridescent spoon. She wanted you to have it because, as she said, it gave her happiness. And I love that because this tiny shimmering object seemed to represent something so much bigger, even as Liz's physical reserves were disappearing. Beauty, color, and joy still belong to her. So, why did the iridescent spoon become the symbol for this book? What did it come to represent for you?

SPEAKER_02 43:42

So I was cleaning out her drawers, which is always after somebody passes away, you've got a lot of memories and you've got a lot of a lot of removal of things that were theirs and the and you're taking the best, right? So I was I was going to give the this all the silverware to a thrift shop and or to you know to to be able to give it away and we were trying to figure out where to give things and my hand picked up the iridescent spoon and I hadn't I had I hadn't really fallen apart yet and I just fell apart I just totally looked at that spoon and I just started sobbing and the person that was helping me was she was she understood she understood there was something in that memory that was important and her daughter says why is she crying I don't get it I was just a dumb old spoon and I thought no it's not just a dumb old spoon it's not it's a and and the the my friend was very gracious she said that that spoon obviously has a very important memory to her and so that's how the name came to the book because it did have a memory it had a memory of the first time we went to uh SS transplant and buying that spoon instead of getting a plastic spoon she wanted at Walmart she wanted the iridescent spoon and we packed that iridescent spoon every medical it was in the medical bag when she was home it it was what she ate ice cream and bone broth with you know it was it was the it was the nutritious spoon and and now that spoon is in my kitchen drawer and I still she and her dad still buy uh chocolate peppermint ice cream and we eat it with the purse per in with her spoon so when I'm having a hard day I go grab her spoon you know and and eat with that it's just that tenacity that resilience that sparkle and that was just who she was just she was that spoon I wish I would have met her I really you know the the joy that came out of her body you know I mean and she she taught you the difference between joy and happiness I mean I found that that very interesting yeah she um when when her life celebration happened and well the day she died I went back to church in the morning and did and danced that day because I'm a I'm a church dancer I'm a one of the the dancers at church and so and and the pastor said I knew we were coming everybody said you wouldn't be here I said I I needed to be closer and I knew the closest place I could be was under worship dance and and and then when we did the celebration of life after that um and we did just our normal service because I didn't want I wanted people to know what she grew up in. I wanted people to know the the family that we have in our church which is very diverse people I mean people that have been in prison people that have been at hookers people you know but people that have had hard lives and and and and we're all we're all a body we're all a family together right I wanted people to see that what she grew up in what she grew up in understanding and and it was packed it was standing room only in that room. Wow and I was I was just like I I had no idea the impact that we made one person cane got on an airplane from another state flew in to give me a hug and got on an airplane and went back think about that that was like you know it was like see the pink column on the bridge last night how do you this is you know it's only one night a year but here's a red and there's that pink column shining as bright as anything and I'm standing next to it right it's kind of cool.

SPEAKER_01 47:10

You are talking about how you know eventually her body just kept going downhill and I mean diabetes and kidney failure and dialysis neurological complications hospitalization after hospitalization and in the end you found yourself signing paperwork that you never imagined you would sign at you know you really thought that well I mean of course that she would receive the transplant we were going to fight for you you she did even all the way till the end but then you were now signing paperwork allowing Liz to become an organ donor.

SPEAKER_02 47:47

Somebody because she her eyes you know somebody sees the world and she be she became an answer to somebody another family's prayer.

SPEAKER_01 47:56

And what struck me which we talked about already about her spirit is that you know she was such a giver so what does it mean to you that giving to others became part of Liz's final chapter.

SPEAKER_02 48:09

Well and having the responsibility to choose who to give to like all the insulin you know where all the medication that that you can give now mostly we had to throw away which was really too bad because there were some pretty expensive things there that could have really helped somebody but you can't if it's been opened you can't do it but you know all the all the syringes and the the pens and the you know all of the dogs you know giving two of the three dogs to my girlfriend to be loved on and and you know and then keeping Latavia for us the the the hair that went to the diabetic kids program you know parts of her body that all of that was all of that was really really important yeah oh yeah and and the book I mean you made a promise to her that you would tell her story.

Promising To Tell Liz’s Story

SPEAKER_01 48:58

I did how did this happen?

SPEAKER_02 49:00

So uh you know how Google pops up your photographs on yeah so it's my birthday I'm 69 it's my birthday next year's seven this year's 70 and on my birthday the memory pops up and she's in this big huge um she always had the best stuff right I mean people would give her the best stuff too so she had this big hoodie on and it was like abominable snowman hoodie you know it's like so thick so warm she was going to stay in warm but it was it just covered her whole body and she had this hoodie on and she reached out to me she said mom mom promise me you're just gonna tell my story promise me you won't let this just go away and I reached out and I handed her my hand and I said honey I promise I'll tell your story and that's the video that showed up the morning I woke up on my 69th birthday and I'm like okay I'm writing a novel I'm writing Tiger Butterfly this is really fun and I've got Ma Lou and she's and she's got good stuff she's doing and it's about secrets and I was finishing with more of Zach's stuff and yeah well that's gonna go away and I'm gonna get this one done and until I get this one done nothing else will happen. So that's what I did. I sat down I started writing it and it it just it just it poured out and I by that time I had a hundred thousand pages of her medical records. So if if I had a question I was able to go back into the medical records and actually see as was my memory what it what I thought it was was were my notes what they thought they were. So I was able to really look at those yeah that's where I found I was a passive mom.

SPEAKER_01 50:31

Yeah yeah no you were not in any way shape or form um you just chose when to speak and when to not and when to stay out you know those kind of things which you know that's an art but I want to end where you end because your faith isn't something placed around the edge of this story. It is woven through it and toward the end you talk about three concepts that I found beautiful Ezer, help that comes when human strength is gone. And Sela, the holy pause allowing your soul to catch up with your body and shalom not peace because the pain is gone but a kind of wholeness that can exist even within brokenness and you describe Ezer through the psalmist's question where does my help come from and the realization that we were never meant to carry everything alone and Selah because the space that space between the alarms the appointments all the crisis where you could pause long enough to recognize both the ache and the grace and also the shalom helped you begin imagining a life beyond caregiving without believing that moving forward meant leaving Liz behind.

SPEAKER_02 51:48

So after everything that you have carried so many years, you know this was decades when there was nothing left for you to fix Jody what held you it was sometimes and I'm going to share this because at the end and this is in Glowstick girls which I got picked as an author for them which is kind of cool because my my story's in there but Carl ended up getting really sick really sick and ended up needing emergency surgery and and this probably tells you what happened. So I went into the same hospital and I hadn't been there and I went up the same ramp and I ran into the same elevator and and I went to the guest desk to get my badge and it was the same guest it was the same picture that I had put on the night that Liz passed away and I went up to the elevator and it was the same room ICU the extensive ICU room that I had to do and I I just closed my eyes and I reached out my hand and I said Jesus take my hand wow I can't walk this by myself I cannot walk this by myself and by the time I got to the locked ICU room which was all two double doors locked I knew I was not alone and the first thing my eyes hit was room 665 and the next room next to it was 667. And because the hospital didn't have 666 in their rooms or a 13th floor wall between my husband and my daughters saying goodbye and my husband saying I'm alive and I'm gonna live was right there and I walked into my husband and he smiled with his eyes and I knew that it was a different path than I'd walked out of. Yeah I don't walk this path my own self. I don't I guess Liz has taught me to be humble. She's taught me to have integrity at a different level than I ever thought I would and she's given me maturity I didn't expect to have so you know in reality as Iago says that's him right it's right right and I and I'm not talking gender souls don't you know we don't have genders and souls but I'm talking humility integrity and maturity and that's what she gave me. So you know what goes on now I I think I'm letting go of some of my projects um Red Shoes Rock will go to the next generation. I'm gonna continue writing of course my work is is all social issues and opening up people's eyes and hearts to people that are not

Faith Anchors And A Living Legacy

SPEAKER_02 54:00

understood. So um and they're they're fun you know they're fun it's fun to develop my characters yeah you you have other books you have several other books so are there any particular ones you would just like to say quickly yeah I'll say I'll say one iridescent spoon is a heartfelt and we've talked about it and it's Liz's story and it deserves to be told and I've done that job. Zach came before Liz um even passed away and it was produced she died on July 6th and it was actually published on July 24th. So it was very close and that is um a novel and it's for the public it's for the public to to understand kids with ADHD and autism and FASD and and veterans with trauma and post-traumatic stress and that group of people become come together in a way that that accentuates their goodness that what there are so but the community ends up rallying around them because of it and it becomes that it's a community support but it's not a community support that's over the top or caretaking. It's more of allowing them to be human. When I when Liz died I finished my plan I I published book for Antonia Rathborn Parroting Your Porcupine and uh Deb Evanson 13 beams of moonlight and for Patty 4D Living with FSD all of those Deb and Pat uh Antonio were pioneers. I did not want their work to go away. I wanted the roots to be laid down solidly for them before their seasonal life is over. And then from there 4D Living with FASD has come out and that's not my book but I'll tell you what it's mine heart.

SPEAKER_00 55:39

Okay. Yeah and Liz's books um are Liz's books are awesome.

SPEAKER_02 55:44

Yeah I mean start it started iridescent spoon if you're interested keep on going uh fasting journey is homeschooling it's our case notes for homeschooling um braided cord is transition it's horrible it's painful but you will not let your child go because you're mad at them if you read it you will figure out another way um best I can be is Liz's book where she wants people to know about her brain and she wrote it at 13 when she could not write um her final book is New Beginnings and New Beginnings is her medical journal in her own words without being edited so people really get a chance and people have said you know it doesn't make sense sometimes this paragraph has like a 30 year old understanding and then it's got a 12 year old piece in it. And and you know I said I did not edit it. You know I okay so I added periods and commas I added some I I tried to make some spelling changes other than that that was not my responsibility my responsibility was let her words be her words.

SPEAKER_01 56:38

Well I was gonna ask like what would her legacy what what would she want her legacy to be but I think you know with all of this I mean this is quite a legacy.

SPEAKER_02 56:48

She left it she left her life in books and and she left her life on pages ready for other helping other families in ways that you know like best I can be fathers fathers love that book you know and up until now lately you know fathers hadn't been writing books but they are doing that now. Homeschoolers that are just like what do I do now? That's all about the vortex and the brain and why you know how you do it different with the environment and time the transition book and then Liz's medical journey you know that told her side of it which I think was very valuable but it only took it up to 2017. My tells my my book Iridescent Spoon tells the whole story and I didn't hold back except for things that don't need to be said.

Rethinking Independence And Support

SPEAKER_01 57:30

Well Jody one of the things that I keep coming back to after reading Liz's story is that maybe we've been measuring independence incorrectly you know maybe independence isn't doing everything without help maybe success isn't performing the way everybody else says it has to be maybe intelligence isn't whatever number comes back on an IQ test. Maybe behavior isn't always defiance. And maybe support isn't the opposite of independence sometimes support is the very thing that makes independence possible. Liz's life reminds us to ask a different question. Instead of why can't you do what others can do maybe we can ask what does your brain need so you can show us what you can do. Thank you Liz for giving us the tinfoil experiment and the sensory kits and get a peek into your world and I want to say underneath the labels the IQ scores the medical charts and the behaviors and the things people said Liz couldn't do was a woman who spent her life figuring out another way she wrote she advocated she sang she cooked she loved and she survived things that she never should have had to survive and she helped people see a world that they might not have seen if it were not for her jodi thank you for keeping your promise to your daughter and thank you for trusting us with Liz's story. Thank you thank you for thank you for listening and I hope this helps other families yeah and everyone listening remember different does not mean less needing support does not mean incapable and sometimes the person who appears to be struggling the most isn't failing at all. They may be working harder than anyone else in the room just to remain in the room. So again thank you Jody she you have so many books I want everybody to check them out and she is a contributing author in the Glow Stick Girl volume four. So that's coming out I guess yeah it's coming out and to our listeners as we always say there is purpose in the pain and there is hope in the journey and we will see you next time thank you