#018 Susan Elsworth: FASD Knowledge Bombs from a MOM

 Susan Elsworth, Founder and Director of Indiana NOFAS 

Susan has a BA in Business Management and an AS in Criminal Justice and Corrections. A former foster parent, she and her husband Duane are parents to 13 children, including 5 with FASD, 1 with Celiac Disease and 3 with Reactive Attachment Disorder. In addition, she mentors foster and adoptive parents, advocates, presents and serves on several Boards and Committees at the local and State level.  

Susan shares what led her to foster and adopt and reveals how, like so many others, she found herself in a State with no service providers, extremely limited expertise in Prenatal Alcohol Exposure and lack of systems support, including family. You will discover her views on: 

• parenting and what expectations we have from others and ourselves 
• differentiating between FASD, other diagnoses and neurotypical behaviour 
• what happens when you fail to acknowledge the grief cycle 
• best advice for birth moms and caregivers just starting their journey 
• the biggest block to helping our kids (and this might surprise you). 

We also talk about NOFAS (past, present and future), life during the pandemic and advise to parents. When asked about her self-care routine, in addition to the regular activities, she said: 

The biggest part of my self care is  reframing success for me and my kiddos. 

You will enjoy Susan’s forthright attitude as she sprinkles her personal and professional experience with so many truth bombs your head will explode. Okay, maybe not explode, but make some room in there for some incredible insight. 

Transcript

spk_0:   0:00
Yeah, I was gonna say cause Mommy's gotta party now.

spk_1:   0:02
That's okay. It's under explicit because it's really life. And I'll tell you, if anybody hasn't heard a swear word, then you're not a caregiver. You you have a good Okay, so here we go three to, uh, welcome to

spk_0:   0:19
the S A s

spk_1:   0:20
D success show The only podcast where you can get really world information about fetal alcohol spectrum disorder. This show will help you create calm in the chaos, Have hope for the future and, more importantly, save your sanity so you don't lose your flip in mind. Now, here's your host. Caregiver turned world F A S T educator Jeff Noble. Alright, Welcome to Episode 18 of the FAA s D success show. Diz, I your host, Jeff Noble. Thank you so much for showing up whether this is your first episode or, in fact, the 18th episode. Thank you so much for being here. I know in these different times in this new world that we're living in, I am glad that you could come here once a week where we could talk fetal alcohol. We could talk success. We could talk you about you we could talk about your kiddos and we could learn from individuals who are doing amazing things and have incredible insight. You know, the show is all about creating success. And the best way to create success is to learn from others who have been there who have done that and who have gone through a lot of it and say, How

spk_0:   1:32
are

spk_1:   1:32
they doing? How are you managing? Because at home, I want you to know that you are doing a good job and you are trying your hardest. And there is no one answer one thing toe learn in order to make this successful eso This is why we're doing the show. So I'm glad you're here. How are you doing? We're now well into what's going on in. Things are changing rapidly in terms of their extending I don't know about in your area, but for us, they're extending the lock down the quarantine. A, um you should I should make a restaurant Cantina. Corrine. Tina, I just thought of that. I don't know if it's good, I'd probably get shut down on Shark Tank, But I digress. Not a big deal, you know, before, before all this went down, I I traveled a lot, and I am extremely grateful and am extremely lucky that I've been to many parts of the world to be able to talkto people about fetal alcohol spectrum disorder. And I'm not here to sit there and brag and tell you how humble and awesome I am oxymoron. But I tell you that because because of my lucky nous toe to teach and train people all over the world, I've been to places because I've had champions. I've had champions in almost every place that I've gone. There has been somebody to step up and say, Hey, listen, we need toe bring this guy in because I think you can add something of value. And so people stick their neck out for me. Ah, sometimes I guess Oftentimes they hadn't even heard me speak live before, but they did what we're doing online. And, ah, I really appreciate thes champions of mine. And today on the show is Susan Ellsworth, and she it just happens to be one of those champions. But she just also happens to be amazing. And, you know, I've said it before on the show, and I'll say it again. The reason for this podcast it Besides, you know, obviously success being the biggest factor is bringing you the conversations that I've been lucky enough to have. I've had these conversations at dinner with folks. I have had conversations on the way to airports with folks. I've had conversations with, the folks that bring me to their cities, towns, countries, wherever I have been in this episode today, what we're talking to, Susan. It is like gather around, sit down under the tree of knowledge and just listen, learn. Drink it in because that's what we're doing today. Susan has many years. You're years, many, many years of experience and we cover just like the locals a spectrum. We cover the spectrum in terms of topics and what we talk about. And I said it in my description, and I'll just give you a quick run down again real quick, What we're actually talking about here today and she's talking about like she talks about parenting expectations that we have of ourselves and other people differentiating between F. A S T and other diagnosis and neuro typical behavior. I get that question a lot. How can I tell if it's f a S t or they're just being, ah, Butthead. Uh, she talks about grief and loss, which is such an important topic. I should talk about advice to birth moms and caregivers. You're just starting Ah, your journey and and the biggest blocked actually helping our kids. And she's runs an organization called a No fast um, which is a new affiliate of the largest organization I believe in in America. So I'm extremely excited about presenting this to you because it was one heck of an interview and I had to stop taking notes because I'll have to listen to it again because she just kept giving me all of these ah ha moments. And it's these ah ha moments that you could use it not only changing your own perspective of this disability, but helping to change other people's perspectives as well, and we totally talk about that. So if you like what we're doing here at the F. A s T success show, please, it would mean a lot to us to, uh, to subscribe to follow. However, it is that you could get the f A s t success show as soon as we drop it, it'll come right to your phone, right to the device that you listen to the podcast on. And it would be excellent. And the more followers and the more likes and the more comments that we get just improves our standing in the algorithm. So when other caregivers who are lost and looking for answers and the enter you know, fetal alcohol spectrum disorder, help, our podcast will pop up and, you know, in the background all the Beeb oops, and they'll just get it in so we could provide that same information that you're getting to them and will make things happen. And that's the way we do make things happen. Like how I've been trying to make things happen in terms of not turning into a £300 man during this quarantine, because I think the go to at least for me for the first couple of weeks was well, we're transitioning and changing and learning. We go to food, right, and that's that's my big thing to and or I'll stay up late at night editing or doing something, doing something, and I'm eating a lot, and so that's not good. And so Well, now I'm saying, OK, this is going to be a prolong period. We I better change. You know what I'm doing here? So because I have the body type, you know, I I I I could blow up like a balloon and shrink like a balloon. I'm very My weight fluctuates. Sometimes I can't even look at a cheeseburger without gaining £10. So what

spk_0:   7:21
we've been

spk_1:   7:21
doing for the last a week in a bit, is I have a young daughter, Olivia sh uh, 16 months old now. And I have been putting her in this backpack and we have been walking every morning. We've been walking. We've been walking for almost, you know, five kilometers, three miles, I guess I don't really know. I don't really knew the translation probably could look it up, but it's, you know, three miles, five kilometers on. It's been really effective really helpful for me. And it's really been good, because I go out with Terra and my dogs and we're just able to connect even with all the business, because they do our work at home tears a full time mom. And she's also helping me doing some work as Well, we have the dogs and the kids. And so we find that time in the morning the ability to game plan strategize, connect all of that good stuff. So are you doing something similar? Or we just white knuckling it hanging on. But any way you're getting through that is fine with me. Just sharing some insights. Ah, so by the time this is over, I'm not waddling out of here When? When we get going again. So I just wanted to share that. I guess this Israel life and I'm a human being just like you guys s. So let's let's talk about today. Let's talk about who were listening to, and I'm gonna give you a short run down, and it's not even really that short, but it's so amazing. Ah, what? This, uh, what Susan has done in her career. So here we go. Ok, So, ladies and gentlemen, lady, we have talking to you today is not only amazing stylists, you know, I hope you check out her blawg f a s t success dot com slash podcasts. And there's a we have blog's of the of the We have the blog's of the episode and Susan's awesome. She's rocking the purple hair. Eso Susan Ellsworth. She's actually the founder of Central Indiana, No Fast, which is an affiliate again of the American no fast organization. So Susan has a B A in business management from Anderson University and a Ass in Criminal Justice and Corrections from Ball State University. She's a surrogate parent for In Susan was a licensed foster parent from 2000 to 2 2014 and mentors both foster parents and adoptive parents. She is a mother to 13 Children, and she and her husband, Duane, adopted nine foster Children, five with F A S T. One was celiac disease and three with reactive attachment disorder. As a previous executive director of New Horizons, a maternity home, she experienced counseling, birth mothers and their families. She's also formed and serves as director of Indiana, no fast and not for profit corporation, serving families and individuals with prenatal alcohol exposure and substance abuse. And she's also director of the Prenatal Substance Use and Family Advocacy for Mental Health. America of Indiana. So here we go. And here we are with Susan Susan A on short notice beer. Awesome. Thank you so much for joining the show. I really appreciate it.

spk_0:   10:25
Thanks for inviting me.

spk_1:   10:26
Oh, man, you're the coolest. And I know this is radio and I I want everybody to at least go check out her picture because you are always rocking a hairdo of style. So I'm going to start there. I'm going to start there. What's the inspiration for? For the color where it is your tile influence come

spk_0:   10:46
from? Well, it's kind of funny because purple is my favorite color and it's not really related to recovery or Alzheimer's. I get people say, Hey, did you die? You're here for that. I have some man stopped me in the store once and he goes, Oh, is that your Halloween costume when I'm like that? Know this is me Every day I think I got to the age of 55 decided I'm going to do what I want to dio and, um, it's you either like it or you hate it. But it was just something that, um, I like purple, and I was like, Hey, this sounds like a good idea and let's get it,

spk_1:   11:24
You, like you survived it, so I sometimes it's different colors of purple, different shades, right?

spk_0:   11:30
Yeah, it is. It's it's hard to keep it all that for a few years I had longer here, and the bottom half was purple and the top past was kind of ah, platinum type of ah, gray color. And so I like that for a while. But after I did that for a couple of years, it's like, yeah, been there, done that. Let's go with something else. And,

spk_1:   11:52
uh, you know what? It automatically when I first Because we thought we talked first. Ah, and then when I met you, it automatically made me feel at ease because I'm, like, up she's called, you know, like it totally presents that vibe, because let's get into it. And I want to pick your brain and we're just we're going to chat because the amount of you of experience you have eyes out of this world and that's what I want to do. And hopefully other people are listening and they want, you know Ah, here some of this wisdom, both good bad mistakes. Excellent. Now you your mom to 13

spk_0:   12:28
right? 13.

spk_1:   12:31
Okay. Ah, that number for some is unlucky. You adopted nine foster Children,

spk_0:   12:39
right? You've

spk_1:   12:40
been foster. You fostered forward or 12 years almost.

spk_0:   12:44
Yeah, 12 years be faster for 12 years, and the house was full. And then we decided, You know, it's time. It's like almost

spk_1:   12:54
like the movie Dumb and dumber when Jim Carrey and Jeff Daniels air driving down and they pick up one hit Shaker and then almost sudden, there's another one in there like pick him up. Look, there's the people wanted right to pick him up on. Then they got the whole truck full of They're all. They're all singing and laughing. Uh, I'm sure there's some of that. There's also some other stuff, too, right? When you look out you into fostering,

spk_0:   13:20
I think What got me into posturing I don't want go way back into the deep, dark cave or so forth. But, um, as a child, I was the only child of my parents marriage, and both of my parents suffered from mental illness and unresolved trauma. So I was the foster care that should have been a foster kid, but wasn't so, I think, as I got to be an adult on the survivor of abuse, neglect and molestation, it was I was drawn to those kids who didn't have a voice. And when I got to a point in my life where I had done enough healing and had dealt with some of those issues, um and, you know, you continue to heal across the lifespan. But I had done the hard work of of letting go of those resentments and growing up emotionally. Um, then it was time. It was time to be that voice for those who didn't. And that's what drew us and to being foster parents.

spk_1:   14:21
Were you aware of f A s T before you started fostering?

spk_0:   14:27
But I knew we weren't aware of f a s t before we started fostering. We weren't aware of f a s t before we started adopting. Um, our oldest son is 28 he's undiagnosed. And I look back now and I'm like, Oh, that's what we missed, right? So we weren't aware of f A S t Until are now, um, soon to be 19 year old was about four. And then it was one of the other foster parents goes. Do you think there's prenatal alcohol exposure here? Oh, really? What's that?

spk_1:   15:04
Oh, No way. So not even on the radar. Not even more action? Because I'm sure. Ah, with so many Children there was a lot of service workers right in and out of ah, in your circle and nobody and

spk_0:   15:18
nobody

spk_1:   15:18
that this isn't a blame thing. This is just Nobody knew, right? Because I'm sure if people knew, they would tell you, Um what did it just click like? Did you look into it after this, reading something, and then go Oh, my goodness.

spk_0:   15:34
Yep. I talked with a foster mom who had a child who'd been diagnosed and like, we'll talk to me about this. And so she started talking to me about the symptoms that her child was showing. And I'm like, That's it. That's Ah, you know, it's the box check name where you're going down? Yep, yep, yep. And so I made an appointment with a genetic doctor that she had used and took a man for an evaluation and then started learning about it. And, of course, Indiana is a state that's kind of backward on services. So l The research that we did was with people that were outside of the state of Indiana, because nobody in the state of Indiana knew about it or knew very little about it. And there certainly wasn't any service providers available with that expertise.

spk_1:   16:23
So you have five in the home. What were were you just flying by? The seat of your pants were what kind of tactics, Like, what was going on in there, then? 13?

spk_0:   16:35
Well, I think that, um, just in general, as we became foster parents, we became aware of each child's challenges and their history. And what we were seeing, unfortunately in the Foster adopt world, is that, um, people may come into giving cares, thinking that there's just providing it for the child. But somewhere in the back of their mind, they're thinking that they want to build their family more that they they have some expectation of how this is going to turn out. So I think foster parents are kind of told that you adopt kiddos, provide him structure and nurture, and everything just turns around, and so they're not really properly informed of trauma and how long the trauma goes on. And as these kiddos begin to age and their misbehavior becomes really significant, we started seeing in our community. We started seeing adoptive parents literally terminate their adoptions or try to terminate their adoptions and turn it back. So, as our kids became available, were like, Well, we know the good, bad and the ugly. And it didn't make sense. Teoh risk them being adopted by somebody who one day would be disillusioned and be finished. It was just a fluke that we ended up with five kiddos that had prenatal alcohol exposure in our one haps

spk_1:   17:58
route. Yeah, I've seen those I've seen. Do you remember that talk show where they that lady And there has been talked about giving the adoption back or going to rusher? However, it was, you know, going back and they were just absolutely chastised. And now that I've been through what I've been through and certainly you as well see that through another lens, you know, probably absolute zero services and parents are pushed to the breaking point. Wouldn't you agree?

spk_0:   18:25
Oh, absolutely. And what we find two is there's this. There's this tug this tension between ah foster care agencies and the state and foster care appearance, where right now Ah, one person in our state that I was speaking to is really, really frustrated with foster parents because they keep wanting to give these kids back. And I'm so it's like but they're not prepared. They're not trained, they're not supported. And it's almost is a They want them trained enough to be somewhat prepared, but they don't want to give them all the information because they're afraid if they tell them how bad a bad day could be that no one would take them. So it's kind of that we want you to know. But we don't want you to know it all because you might run away

spk_1:   19:12
because of the placement game, right? And it how expensive that is. And the turnover for foster parents and, ah, social workers, you know, scrambling because their caseload is massive and they have these kids who are in purgatory basically, and so they're just looking for a place of, and they often place them in the or you have a great foster parent. Ah, you know, you have a great foster parent who's who's raised no typical kids on their own, and they've done so good and then they use those same same systems and say Ah, behavior management on. Ah, kid, who's has a neurological impairment and it goes south. The caregiver burns out, the placement breaks down. Right?

spk_0:   19:56
Right. Because at that point, it's like, um, these kiddos require outside the box parenting outside the box, everything. So when somebody comes into it with the expectation that, um, this should happen, I'm going to do a B and C is gonna happen. That's a set up. You know, that's just a senate for disaster

spk_1:   20:17
on. I feel even you're talking adoption as well. Uh, I I when I came into this, I was a foster parent, so I didn't really understand the adoption, the world until getting into it and talking to some parents in just what they go through to acquire a kid. Just a trauma for maybe not being able to have a kid. Ah, and then going through all this paperwork money to acquire kid, Oftentimes going to these countries more than once I see the kid. Ah, and then to have the you know, like you said, you used that word. Expect station in that story of what they were look king for. And then it's it's not that. And not only that but they don't have training and they don't have systems

spk_0:   21:01
apart, right? And they and they don't get systems support even from their families. Because, um, their families have don't haven't raised Children with prenatal alcohol exposure. So they're they're being It's parenting an official, and they're being critiqued by everybody. Um, whose parents had no typical Children. And

spk_1:   21:23
it's It's like the athlete who's always getting criticized by people who've never really played the game. Yeah, right, you know, And over and over. And that's it could if you're mentally not strong enough, that could totally get to you. Did you find that with family as you acquired your own? You know, speaking about athletes, you start your own team took us for, you know? Well, what was that like with your dynamic with your family?

spk_0:   21:52
Um, in the beginning, I think people were kind of excited. Ah, we had toe do some explaining about certain behaviors. I think that, um, consistency and being clear of their expectations was misunderstood by the people that we were around. Um, in an example, would be if we had a child who had trouble with boundaries. And so we had a rule that said that you must ask permission, Teoh, sit in a chair with some loan or sit on their lap. Except drug. Yeah, right. So they would go up to that person and they would give him a big hug in you It address the child in bay? Excuse me. Did you ask someone so first before you did this, then the Adele go. Oh, it's okay. It's okay. And you're like, No, it's really not on my appreciate your willingness, but we're working on this boundary issue, and we ran into that so much with people that are like, looked at us like, Why are you so harsh with this? Why are you so mean with this? And it's like, Well, you don't have the back story. You don't need the back story. And so

spk_1:   23:05
I like that you don't have the back story, and you don't need it. Oh, that's good. You could tell you are a warrior. And you you don't take no s. Now, I can tell you that that's a very apparent. But how would it make you feel where their points that you felt like my gosh, I can't do this like Is that even if there was 13. Beautiful Nero. Typical. That would still be a lot.

spk_0:   23:31
It was a lot. Um, I think when you're in the midst of it, you just put the next foot forward. You know, you're not really thinking about how big it is. That's from you. Just you just take the next step, you do the next step, and it kind of falls into place. I think that if I'm gonna be, um, honest that the times that I felt like I just can't do this were the times where I would have one child displaying a, um, and safe behavior, uh, uncontrollable, volatile behavior. And I would have another child who was reaping the brunt of that, um, volatile behavior. And I'm in the middle between the two and my my head understands what the volatile child's going through and intellectually gets it. At the same time, I have a responsibility to protect the other child. And then neither neither child feel like you get him, you know, And you're in the middle going. I'm doing the best I can. That's still not good enough, right? So when you have several of those experiences that stack on top of one another. Um, it can be tough to pull through

spk_1:   24:41
the absolute Absolutely. It's hard. It's like, This is absolutely again I said it one of the hardest things I've I've ever done in my entire entire life. It's just the amount of care you have to give. And I, you know, I can't fathom being a referee for 13. That's like half of a royal rumble in the W w. You know, like, honestly, that's dignity. Meaning me, you know, put a striped shirt on you. Sometimes I'm sure that felt like that.

spk_0:   25:10
Yeah, well, unfortunately, they weren't all in the house at the same time. You know, we had older Children as we started fostering, who had grown and gone, and we're out on their own or out in college. And then the others were just added over the course of time. So, um, those a little bit of space there?

spk_1:   25:28
Like, how do you manage meltdowns? Because that seems like a lit match in a fireworks factory. If one goes off here, we go like, how do you manage that? Because one no problem. Not no problem. But I can isolate. I could distract redirect, you know, soothe all that stuff, but with the others in the back, How do you do it? Just give it. Just tell us out.

spk_0:   25:55
Okay? Well, I'm gonna be honest, and I give you the same answer right up front that I give everybody else, you know, when they say, Oh, how do you do it? Like, I'm not very well. And I think it's because on my own worst critic or I have the highest expectations of myself more than anybody else has expectations of me, But But again, I think you just step into it cause whatever's happening, it's a it's a fire. Right? So you've got the fire hose and you're putting out the most dangerous fire, the one that's closest. That's going to be an explosion to the gasoline. And then while you're doing that, um, you're multitasking and you're saying what's going on over here? Is this dangerous? Is this not? Can we wait for this? And sometimes it gets to the point where you know, you're like the drill sergeant kind of saying you're like, all right, everybody to your rooms were dresses one at a time and you're sending them on their way. No, no, no, nothing. I'll be there to talk to you when I get there and and you address it that way until you can bring your by together because they do feed off each other from the woman's upset. It can see one behind me who's making a face or cutting their head or doing something at Exam on. And so sometimes you just talkto separate a mile and send them someplace quiet so you can get to it one under time. And sometimes you don't have that that luxury, you just dive into it. So

spk_1:   27:21
is, is your vehicle a city bus?

spk_0:   27:26
Yeah, like I call it the Great Limousine. Thanks.

spk_1:   27:30
Yeah, Gray limousine.

spk_0:   27:32
What? It's a 15 passenger, and fortunately, that family now is getting down to six kids with two adults. And so we can We can almost get into what regular vehicles now without it being that, um, 15 passenger. But

spk_1:   27:50
did you have an administrative assistant with all those appointments?

spk_0:   27:54
I know you're dreaming.

spk_1:   27:56
I want to ask this right out of the gate because you have kids. Other kids with other challenges, you know, celiac, reactive attachment disorder. Rad. What I get this question? How do you know if it's rad or f a S T. How do you know if it's typical or if it's f A S T. What do you say in your training's or when you're speaking with

spk_0:   28:22
parents? Okay, so what I'm doing my training's, um, we have the prenatal alcohol or substance exposure. We have the possibility that maybe autism we have trauma in the background. If the child's come through the foster care system, you know that you've got some issues that you're dealing with, and I say it is impossible at one point in time to look at a behavior and go, Oh, this is this because they so parallel, you have to look at the context of what's going on and look at the history of what's going on to see what it's related to and always air on the side that's going to give you the most grace and

spk_1:   29:03
good. That's another one. We are on the side that's going to give you the most grace that's going. Always err on the side that's going to make you more empathetic.

spk_0:   29:12
Yeah, and when you're looking at their behavior, um, and I also tell people that you know they may have these challenges, but kids are kids and kids, mate do defiant, devious behaviour just because they're trying to get away with it and it feels good and they get a reward out of it. That has nothing to do with the disability or prenatal exposure. It's Bereket. And so, um so that's why I think it's hard to 100% of the time, no, ah, 100% sure that that's where it's coming from. And so you just do it by context and what's going on around and what happened before. And, um,

spk_1:   29:49
and really knowing and not really knowing your kid too, right? I think you think people say that, though, because they want to know if they could punish narrow. Typically, you know, like consequence. Narrow. Typically, if they think this isn't the disability, Do you think maybe that's where the questions coming from?

spk_0:   30:08
I think that, yeah, I think that people are looking for the, um, the standard answer. I mean, I think people want if I do A B and C D's gonna happen. They want to be successful, and I think that when we're talking about parenting from a connected point of view, whether that has to do with prenatal exposure or whether that has to do a trauma or whatever were really saying that what is going to help this child did to develop into the adult you want them to be, is that emotional connection with you. And that is the hardest thing about parenting, because they'd be so easy if it was just like I do these steps and everything turns out okay, or I offer this discipline and everything turns out OK. But if we could shut that off and say whether they're typical or not typical, here's the best way of parenting and it's never cookie cutter. It's always about the relationship that adults don't have time for that right there. They're like, I gotta work. I don't have time to sit down the couch. I don't have trying to make this. I just I just gonna be able Talam boom got to do this and it just happens. And so I think sometimes, you know, people are looking for the shortcut and, um,

spk_1:   31:22
be easy, not not necessarily the easy, because they wished it was easy, like it's this is not what they wanted, you know. So this is where that you brought up the word resentment kicks in. I don't think people really understand how deep that that really goes. And once that seeds in those roots of presentment start growing, you don't rip that out. It's just goes until the placement breaks down.

spk_0:   31:49
Yeah, I think that you're right. And, um, I think that I've had to even myself. When you talk about expectations, you know, um, when when someone dies, you're like, you understand the grief cycle, but a lot appearance, your parenting kids challenging kids don't understand that. They're constantly in a grieving cycle again, and they don't get it. And so when I say if it crosses your head at all, it shouldn't be this hard to get somebody do this. It shouldn't take me 15 times to tell you to tell your shoe before you tell your shoot. If that is any of your thinking, you're grieving because you're comparing that picture you had of what your life was going to be like. And what you've got is not the same thing. So there's a gap. And if you don't address the fact that there is a gap and how you really thought it was gonna be different then that resentment does start to grow. And then you find yourself responding to this child with less empathy, with less willingness to go outside the box and you become, you know, more punitive, right? And so then you have toe hit the stop button and really go back to okay, Why? Because it's not at this point. And this is what is really hard for me when I'm talking to parents because they call me and they're done right. You know, they've been fighting this. Been fighting that's been fighting less. They're looking for residential facility. We gotta get this kid out of here and you validate the what? What you hear them say? Because you know, it's a really hard spot, but it's really hard for them to understand by the time it gets to that point. It's not about the kid anymore. It's about the adult on how the dealt has dealt with the disappointments, and it's so much easier to say. Well, this kid's not safe. They need to leave than it is to say, You know what? I was really angry at this kid because you know, and then go back and deal and men that relationship

spk_1:   33:47
it's in. It's tough because a majority of our kiddos and individuals and young adults ah, look normal talk normal, right? The just the ability to mass competence. Now, Now it's not saying that they aren't good at things. Because, yes, this is a podcast called a fiesty success, and they are super successful. Were often comparing their success to some success that they won't be able to reach. Um, you know, there is this excellent poster that they had when I was in, please off Fort Frances Que and the executive director was taking me through and they had another kind of marketing not like market, but like, you know, ah, awareness campaigns and stuff. And they had this poster of an individual with an intellectual disability and said, This kid's not going to be a doctor or the next prime minister. Ah, but neither are you. So check your expert. Yeah, right. Like it was. And I was, and I was like, Yeah, that's but it doesn't mean they can't work a parliament or on the hill, and it it doesn't mean, Ah, you know, you can't work at a hospital. One of my girls that I first coached is going to college for a P S W eso there, right, there are successes, but it's it's healing and then starting to see just how hard their brain works to maintain normal. And, I mean, with the amount of with your family, you must see that all the time.

spk_0:   35:21
I do. And I can think of one of mine that I have a home here. Um, I have a set of twins and course, same biological parents on the set of twins that prenatal alcohol exposure completely affected them differently. And we may have another train go through here. But one of the kiddos is more sensory and ah, susceptibility, real sensitive delight and sound and stomach and food issues. And the other is what we stare. Typically, thank God in terms of the anger management issues, the volatile nous, the blowups, the, um, having trouble integrating in schools. But piers etcetera. And when he's, um, he acts out a lot because he's so frustrated and he himself will say, I can't I can't stop it, you know? And so when you can pause yourself long enough to listen to the hurt in his voice. He hasn't won his life to be like that. Hey would give anything to be able to hit that stop button and think, If I do this, what's going to happen

spk_1:   36:33
that he wants to connect and please you and be a contributing member to the family? I said this even last podcast. No, no individual period wakes up and says, You know, I want to make my loved one's life held today, right? No rightie wakes up with that. Ambition were not built that way. We, you know, we want, we want to succeed. We want to not only survive but thrive like that's the human nature and then to not have some of the tools to be able to do that. That's over frustrating. But then I bring it back to look normal. Talk normal. That's that's That's one of the toughest things to see. You can't see it and again, I'm not hard is hard, but I have a lot of parents tell me it would be easier if I could see it if it was like a down syndrome or a really physical thing that I could see Empathy goes way up. Ah, because what? We think the someone looks normal, talks normal. Then they should think like me and act like me. But no, no, brains are the same. Ah, and I think it's amazing what you're doing with 13 kids. Uh, before we get toe no fast, like, what do you do for you to not go bonkers, man?

spk_0:   37:45
Huh? Um, when I first was a foster parent, they kept talking about self care self care, you know? And I was like, Give me a break. I have to go the bathroom by myself. You know, you can't go anywhere with 13 gets how you get self care. Um, and it really got to the point where, having not taken care of myself the way that I needed to, um, I, you know, I had experiences that showed me that I wasn't making the best decisions that I could make. And I had some health issues that cropped up. And it's like this just because you're not taking care of yourself in. So then I learned the value of self care, but, um, I think for me to take care of myself is where, uh and this has been affected by Kobe, right? Because I drive to work. So during the drive to work, that's the time for me to listen to a book. Listen to music were just have it quiet. Well, suddenly now advise stay at home. So now that one coping feel right at that gun now. But I have a few people that I can reach out to who aren't parenting kids with that BST but have gone to the website and have learned and have some understanding of expectations that I can be brutally honest with. I'm really struggling with this. I didn't do this very well. This is how I'm feeling. Um, I tried to get on the treadmill and get some time in. Get outside. Um, listen to audio books. And, um, I think the biggest part of myself care that I'm continually working on is refraining success for me and for my kiddos because I have to reframe. What does it look? What am I looking for from myself? What is a good day? And sometimes we just stretch that to fire. I mean, you know, works like we're expecting our sounds Teoh do things that just are not possible for us to be able to dio

spk_1:   39:46
especially now. Especially now with you Were you were chatting? We were just chatting. Ah, when I was asked you to come on. Ah, First, though, you forgot to mention that listening to the podcast was a part of self care. But not I would say that, but that's reason we're talking about the The other thing is now with cove, it Ah, an f a s t caregiver on a good day has toe wear three or four different hats. Right now we're adding a teacher to that mix,

spk_0:   40:21
right?

spk_1:   40:22
How have you balance that? What does you have? You changed your expectations as it goes on. Like, how are you guys managing at home?

spk_0:   40:32
Well, um, I think that, um You probably wouldn't want to ask my kids teachers how we're doing. Um, because in the beginning, it was OK, number one. Um, I didn't sign up to work from home, so I'm still required to get my hours in per week doing my job. But now I've got to do it at home. Number two. I didn't design. I didn't sign up to be a home school. Well, now all the sudden you're on a home schooler and I'm working from home. And so the first week of the prolonged the learning the first day, I was literally I was on the edge, literally. I was cheerful, although I didn't. I felt fearful. I didn't actually cry, but it was like we were bombarded. We had Zoom meeting after Zoom, meaning teachers scheduling. There's new meetings at the same time. All the links that were supposed to work weren't working. The teachers are going and the kids know how to find this assignment. They just go here, you know, it wasn't working. And so then ah started on Tuesday because we're doing no school on Mondays and Fridays. They're using those waiver days and then just a waiver. Where that where the state said, you don't have to be here, So they're they're using those waiver day. So Tuesday was the rough day. Wednesday morning, I got up to an email from one of my kiddos teachers who actually said, Can you please went out to all students? Not just me. Can you please help your student find a quiet place in the house where we could have our zoom meetings because, um, the noise in the background is really not productive for us trying to get our work done, etcetera. And I read it, and instantly I was like a sheep. Freaking kidding me. You know, I have got E. I didn't. So I had five kids around the table and they're all having zoom meetings. And so I just responded back. I didn't I didn't find your mail. Or but I respond back and just, like going, Um, I'm sorry, but were stacked on top of each other. We're all around one table. That's the way it's going to be. And could you have your students come in and Mike and mute their mikes? Because your meetings are so loud that the student next to them can't get anything done because they're overhearing, right? And so, um, then we set some boundaries. It's like our school here is done by three o'clock. If they were in the physical building, well, one of our teachers was having a scheduled meeting at four o'clock in the afternoon. I'm like Hell, no, right, it's after school hours. You can have a meeting during school hours. But after normal school hours, we're not doing zoo meetings. This is just not happening. So we just set some boundaries. What is sustainable for us? What can we do for us? And then with one of my 14 year olds that is not as trustworthy with an iPad as we want him to be going to sites that probably shouldn't be going to write the just yesterday. Um, we we pulled his well last week. We found that he had gone to some places he shouldn't. And so we pulled his iPad on. We contacted the school were like, We don't know what you're gonna do, but it's not getting his iPad back the rest of the year. We want paper copies, and you need to give him allowance for these assignments. This week, he's going to miss and you and we had to do what's right. I mean, and and give up. What do they think about us? Or how do we think that we're doing to just say OK? You may think that I am, you know, the mom from hell. That's okay with me. But I'm going to do what works for us and your going to accept what we can do. And you're not gonna penalize my child because you can't be Johnny from next door.

spk_1:   44:19
That is gold man. And I hope that some folks all of you are listening to this and just drinking this and you know, she knows what she's talking about. You know, my online course, we have a membership site, any who. Ah, and the mom was worried about. She was frazzled. Eight kids she's and she got

spk_0:   44:39
through five weeks

spk_1:   44:40
and she's now tired. And no wonder. But will you get down to the crux of the situation? She was worried about what other teachers would say about her at the school. Yeah, and we do that like it's It's, ah, natural because everybody like your kids want to be frickin liked in love. So that same way that you're feeling your kids feel at all the time like that is a good indicator to see. And I believe you and I think and I'm so glad you said that. So parents, if it's tough, if it's hard if it's too much, stop no and don't write, like put out because you know what success to me is for me is that everyone gets out of this with a good mental health. Everyone gets out of this so we have enough energy to transition into what this next chapter of living looks like. Because it doesn't matter how many assignments we fight to get done. Your mental health is the most important because it's the one that affects you long term, right out of school. And it's what you said at the starting about what you want A Z much as you can and adjusted adults that contributes to society, not consumes.

spk_0:   45:55
Yeah, right.

spk_1:   45:57
Put the kibosh on that like no way. And this is new for the states and the teachers to It's not, you know, I had a hard time and you got 1/4 of what was done. They're not gonna be like, Well, you fail because you know what's good they're gonna find when they get back to school. That are. A lot of parents are in the same boat, even of neuro typical. You, uh, have taken it to the next level. Your trainer you actually formed. You're the director of the Indiana on No fast. No fast is the ah federal organization, right? And so tell me how you start like what drove you to start it.

spk_0:   46:38
Okay, so, um, the skinny version is as parents, you do what you need to do for your kiddos. I think a lot of innovations and a lot of things and not profits have started by moms and dads. Just doing what's right for their kids like that was never my goal or dream when I was a kid. Oh, I'm gonna, you know, grow up and start a nonprofit, but through trying to get what I needed education, Why educating myself, educating providers around Here's my kiddo. Here's what will work better for them, etcetera. You become known as a family advocate. So in the state of Indiana, I became known as a family advocate and was actually asked to serve on a state level committee to train other family advocates in through that opportunity. Then I was asked to serve on Indianapolis, has Riley's Children's Hospital, and they have a program where they being like 25 different disciplines together from doctors and goatees and just across them, and they bring family members and and basically it's like how to play in the same sandbox nicely with each other from your different perspectives. So I was a family fellow, and you had have a project for this, Um, and it's obviously could. Well, what's my project going to be for this nine month period? And they all looked at me like, Are you crazy? It's right in front of your face. Like you need to start a nonprofit for F A S t so that you can give this information to other people in the state who don't have access to information and have never had to fight for services or don't know how. So in 2014 I started a nonprofit for F G S d and then, um, started building relationships just showing up in, uh and I think becoming a family leader the state level was very, very helpful. It introduced me to people in positions of influence that could, uh, I could get connected with one has come share my kids stories like, I know that this is big, but I think this this is really important because out of all the, um, f A S D is not the favorite thing for people to talk about especially when it comes to disabilities or challenges, making sure they understood what it was. And then I got the first grant ever for the state of Indiana for prevention dollars for every STD prevention. So we got that in 2015 and was working from home collaborating with people who are already coming in contact. Um, with the people that we needed to get the information to, and I think that's been our biggest part of our success is sometimes people think I got to do it myself. Well, let's just let's talk about your podcast for a second here. Like I could start doing podcasts myself for Indiana. No, fast. But why would I do that? When I can hook people up in Indiana with your podcasts? You're already doing it. You're already providing that information. So you, you know, utilizing the experts around you on. That's what I do with relationships as like, I can't get to everybody, but I just can share with the people that I can get to, and then it starts trickling down. I'm then, in 2017 we became a subsidiary of Middle Health America of Indiana, which broaden our scope and broadened our reach and put us under a bigger umbrella. So that's kind of the trail cookie crumbs of how we got to study at my kitchen table to being involved at the state level and studying on committing with people who do perinatal substance exposure and trying to improve outcomes for infants and moms to reduce infant mortality. And it's it's evolved.

spk_1:   50:31
When you first started, did they look at you like you had two heads?

spk_0:   50:35
I think when um, we first started, um, people said that she's just a mom rate. And so, um and and I use that to my advantage because I think when you walk into a room, it's good to learn the landscape and learn how it goes. I didn't walk in trying to prove anything. I walked in trying to listen to see what was going on, and then when someone kind of was just a patronizing or facetious kind of acting like Oh, yeah, we've got the little family member at the table. Then you start busting out knowledge on him on, and so then they looking like Oh, okay, wish I hadn't opened that can of worms, and it's like Thank you very much. I really appreciate the opportunity to share that with you. And then when and when you could do that. But not in a hateful way, but just in an informed way. Um, you started Get incredible, right? And as your credibility grows, then you weaken my content expert, and then people rely on you. How does this work with, uh, what do you know about this? How does this work with the people that you work with? What are you hearing? What suggestions do you have?

spk_1:   51:50
One of the points you made was you didn't walk in busting stats, but rather you told your kids story. Yeah. And that's and because, honestly, if you're an advocate, it's like sales, right? This is what I teach in my course. Ah, you could butter it up, but there's a sale going on, you know? And and we know that fax tell, but story cell. And you're trying to sell them on the idea that need They need to, you know, uh, pay attention to this disability. That's what you you know, we we need to sit at the big boy table because, you know, we're 2.5 times more prevalent than autism, you know. But then there is that whole stigma with drinking, which I think you were talking about. It's not you just roll your eyes. Why did you just roll your

spk_0:   52:37
eyes? Well, yeah, you're right, you're 100% right, and this is what we run into. It's like I said on a lot of state level committees. I'm Of course, the opioids had the big song and dance where right and so all the money was going toward opioids. And and it's not that I was making an excuse, or it's not that it's not important or job, but it's not critical. But it's that we when we look at even infants, not not every infant whose exposed to opioids will be diagnosed with neonatal abstinence syndrome and of the ones who are diagnosed once they stabilize and they learn to stuck and they start getting the nutrients that they need. Often in six months, we see no evidence of exposure. Now that that's not, you know, something is going to bring me a kiddo that's got obvious signs, and so it's not 100% true, but by and large, the majority are not showing those signs, and we see when we have not been able to follow those same kiddos to age 678 to see, Does that still hold true or not? What are we gonna see then? But for alcohol? We know this is lifelong, and yet we're giving more attention to opioids than we were alcohol. So that's been a battle. You know, I've been fighting for, ah, long time, and we kept thinking, Okay, what's the next thing that's going to jump in and take the opioid spotlight? None of this salt is Kobe, Right?

spk_1:   54:02
We were living

spk_0:   54:03
was index substance that's going to step in on all said Now. The spotlight's off of opioids, and now it's all about Kobe

spk_1:   54:12
because it effects everyone and more of the influencers votes. It's the truth, right? Um, and you're right, and it is derailed a lot of people's missions and what they're trying to do, and and that's why we have to focus on a again what we what you can control and your household is definitely what you can control. You can control what ah, you allow outside influences toe have that influence on your family like with the school's other services. Ah, and you know your kids the best. Nobody knows them like you dio And so I think. Do you, um, are used, like now that covitz going on? What is no fast doing? Are you doing online? Um, check ins like, do you have a support group? What are you doing during this time?

spk_0:   55:08
Well, I think the first thing I want to say is that, um I learned I'm not fighting Kobe. Like trying to say, Hey, you know, at the SD, is Justus important as this going on where we're saying co it is very important. And here's how is affecting this vulnerable population. So we're partnering with it versus trying to say, Hey, don't forget about us over here. This is such a big deal. So the other thing is, we're working on some infographics and we want to be really, really careful because when I think I rolled my eyes with the stigma, right, because you were talking about the stigma. Um And so when we're trying, we've heard several people say, Oh, man, I'll think of all the babies that were going to get nine months later from this confinement with Kobe. So we're trying to think of creative ways. Teoh, address the fact that we know alcohol delivery. Home alcohol delivery has increased. Right? Thinking

spk_1:   56:05
about race in Canada? Double. At least there's figures for every province at least. Yeah.

spk_0:   56:11
So how do we get in front of people with the information of while you're at home? Um, think about if you could become pregnant during this time period. And so we're working on an infographic that we haven't got out there yet, but it it's more along the lines up. It's got a picture of a baby bottle that's going, if you could be reaching for this and nine months, check out and it gives our website before you reach for this bottle and it's got a picture of alcohol. Okay, so we're do we're doing that. And then we're doing some online stuff now reaching out toe to caregivers who are home with their kiddos and just giving them a free space toe sharing. Yeah, because

spk_1:   56:53
it's tough and open up to others.

spk_0:   56:55
Yes, right. So that's one of the things that we do to is making sure we have family boys. And how are the policies and procedures that are being developed. How do they affect families and represent families? One of the things that I've been really, really fortunate enough to do is in the substance abuse world is, um, we developed a training called Bridging Gaps for Children to recovery because what we noted is the goal for recovery was Get Mom and get her sober. She's, um especially when the kids have been removed, you know, from DCs. Then everybody is all about getting her sober, getting her in her program and then reuniting her with her kids and getting our kids at a foster care. And all those schools are great, right? But the one thing that is missing is the families were never brought in as part of that recovery process and especially not the kiddos. So Mom is busy getting clean. She's done her clean time. She wants to get her kids back, and then she tries to re engage. But these kids are still pissed at her right so much she's reengaging. She's thinking everything is good. Don't you appreciate what I've done? Not realizing. The kids have been traumatized and they're just mad at you. There's some repair work that you're gonna need to do to reengage successfully. And so we wrote a training to help give her some proper expectations and tools how to reach your kiddos so that they become informed and then talk to the mental health agencies. It's like when you're talking about reunification, reunification with Mom, Are you bringing the kids in? Are they in the same room? Is there a family plan that the kids are being able to express? This is what I feel comfortable doing, or is just just one more saying that we're forcing kids to go through, and they don't feel like they have to say about

spk_1:   58:43
Wow. So I wouldn't have thought of these nuances. And I guess that's what experiences taught you that now agree to training for these nuances because they're also so important. Ah, and to jump on top of what you said in terms of also, the mom is also on the spectrum as well. She gets sober and does what she needs to do, and then it gets the kids back. Ah, but it still goes wrong again because nobody has addressed the functioning and nobody's helped. Nobody's helped address you know that she needs help. Needs a system because she's got some neurological impairment,

spk_0:   59:19
right? What we hear is in the recovery world, what we hear is, well, they just keep camel. This is their fourth time through their fifth time through whatever. And it's like looks Excuse me. Have you thought about maybe screening mom for prenatal exposure? Oh, we don't. Yeah, maybe we should try doing that, right?

spk_1:   59:40
Right. That's one of the quotes. I probably say it every other day. Dr. Gail Andrew's diagnosis of fetal locals a diagnosis for 22 patients. There's the mom and the kid. Uh huh, right. Whether they're on the spectrum as well or whether they have trauma, substance abuse. Ah, a myriad of things going on with her. We don't look at functioning, we look at face right, And the more we look a functioning as the better it will be now, before, before I let you go, because I'm surprised I haven't heard of fire starting your house yet. The fire alarm go off. Ah, what? What do you say to ah family who's like, just who's just starting this journey? That 1000 yard stare where they're looking at you, but they're looking through you. Ah, I get that often. And if you were to sit in front of them, what are you What are you telling them?

spk_0:   1:0:34
Um, I think that the first thing that I want to say is greed, Right. Um because if it's not the caregiver hurt. There's two ways to look at this. If it is the biological mom who now realizes that her drinking may have lifetime effects on her kiddos, we're going approach this differently. The first thing we gotta do is get bio Mom to not beat yourself up. Great, because that guilt will cause her to not make good decisions. I mean, let's just go from where we're at right now, what kind of things and and give her the tools and strategies of what she might see in the behavior in the future. But the biggest piece for her is letting go of the guilt for giving herself for a caregiver who is taking a child who was not the biological parent. We're kind of doing the same thing. And I'm really super big on making sure that that care giver does not billon eyes and demonize the mom because that is going to affect that relationship with that child long term, in ways they cannot even envision So that get caregivers say, Oh, we don't talk about mom in front of them. Unlike if you're on the phone talking to your neighbour, talking to the doctor, talking to whoever you're talking in front of this, kiddo, because they're picking up on everything that you say. So we always talk about biological parents in terms of they loved you very much. Then they continue to love you very much, but making sure that they're embarking with some tools of what it could look look like and helping them to develop a safety plan, Right? What happens if this behavior happens? What's my action steps? What happens if this behavior happens? What is my action steps? So then what happens? You're working your plan instead of you. Ah, responding emotionally,

spk_1:   1:2:33
that is Oh, my gosh, Sochi. This is the third time I heard this Today. This is organic. I must ask you, where does one go to create an action plan? How do they do that? Because I hear Oh, I know. I need to. How do I Where do I go?

spk_0:   1:2:52
Um well, I think that we learned to develop an action plan because we didn't have one, right? I think that's almost people. Something happens and you walk through it and you're like, Oh, my gosh. And then later, like, you know what? Let's to debrief what could have gone better right on. That's how you learn that you need one. So, um, I think that when we're talking to that new parent about developing an action plan, we're giving them the tools and skills on the steps somewhere saying, who are the people that are around you that you can call at a moments notice and say, Can you watch my other kiddos? Can you watch my dog? You know, um, who can I call for support? Uh, who? What medical people are going to be involved. And it's just like almost like one of those things on the refrigerator, right? That's got the different numbers and so forth. But you're just you're just stepping it out and filling and the steps line by line

spk_1:   1:3:49
because you said once you have a plan, that way you go into the plan and you don't respond emotionally. great because we dio you like you said you could even know everything about f A s T. Ah, yeah. I've coached families who there were f A s T professionals and you could know everything about the disability. But when you're emotionally involved, it's it's hard to separate at that time. I think that is the key, you know, even responding with emotion when when you get this. I heard this on a podcast. I wish I could give them credit, but it wasn't me. Ah, you know. But when When someone is emotional to you or says something to you that is just in the way you feel is just data, it's not directive, you know, you don't have to act on the way you feel. And because when we two things happen, right, you act emotionally and everybody gets upset. Nobody feels good, and then the parent feels awful. It just doesn't help. And I know it's hard and people are still going to engage. I think one of the skills is rebounding from once. You do engage because I don't know about you. But for me, once I had one of those incidents and I've engaged we blew up, it could kind of spiral into more bad, more, more bad days. You know, you're like, Yep, absolutely. Uh how how do you? What is a skill that you used to not engage? I know you mentioned hope everyone into your room, but is there something else you do to separate yourself in that moment?

spk_0:   1:5:27
Um, frankly, the most. The most productive thing that I have done for myself to break that habit is therapy for myself. We put kiddos and therapy all the time, but I went into therapy and I said I mentioned early on about doing some work. I think that adults under estimate the power of personal triggers of their own. So they think because they're an adult, that they have it under control or they don't have to address their triggers that I had to learn what my triggers were so that when my kid, a who's having a melting meltdown stomps there but squares their shoulders, steps up like they're stepping up into you And I had that immediate feeling of Oh, heck, no punk, because I had been a victim of abuse and neglect in the past. I had to be able to recognize this is my trigger. Because if I don't recognize that that's my trigger. Then you're gonna get what you're talking about. You know, the kiddos gonna mouth off the kid is going to do something. The adult is going to try it out. Parent, that situation, you know, you can't reason You've said this a 1,000,000 times. You cannot reason with somebody who's, um after you have flight flight inferior right, there's no the logical thing going on there. So then it becomes a tit for tat and your escalating, and you're both triggering each other. So whether you're an adult, um, who's actively dealt with your triggers or not, you're still the adult. You're the one who's gonna have to walk away. You're the one who is going to have to stop it because this child can't. They're incapable of stopping it, even if it's hard for us. And so I think me going through therapy and having at that person being willing to be vulnerable and say Here's a scenario. Here's how it played out and then being able to see from a neutral perspective, you know what, you you probably didn't handle this its nose productive way right? And or you did Or here's what I hear that you did well, so that was for me. Probably the biggest key is learning that, like you hear adults talk about, um, they keep lying to me and and that that lying it sets him off right. And so is you Try to explain that they're not doing this to them, and that's where most adults get their trigger there. Like they looked me in the eye and lie to me So they personalized this child's behavior like it's an assault on them and you're like, Hit the pause button because this has nothing to do with you. This was never about you. This was about them and this behavior, and some adults get it. But frankly, that is my hardest thing. And my training is good adults to understand that it's not personal, and it's not about them. It's something that's going on with the kiddo at the time.

spk_1:   1:8:18
That's awesome. That's that's so ice. And I'm glad this year's you've said everything I've hoped for, and more, uh, before I let you go, what's what's next for you? Like I know everyone's just trying to maintain and get through this and we don't know. But is there anything you're working on besides sanity? T like where? Where do you see yourself really see yourself like what's happening?

spk_0:   1:8:43
Well, we are an affiliate. You mentioned the national when that's no fast on the National organization for fetal alcohol syndrome. There's an affiliate networkers, which were part of If Indiana is a an affiliate up. I'm actually right now serving as the chair of the affiliate network for no fast. And so we're working on. How can we in our country get the same information across the country? So if I take a training in Alaska, I'm going to hear the same training that I'm gonna here in Florida so that there's not. The latter would cut down on the lack of, um, misinformation that seems to contradict each other. We start using the same vocabulary, so we're working on that. We're working on messaging. How can we reach more people and make sure that our messaging is not stigmatizing and doesn't end up doing more damage? In the end, the custom that things that we're hearing as when people talk about birth defects or Ah, that adults done who are affected come back later and say I don't appreciate that, right? You know, that sounds like you said there's something wrong with me. So how do we talk about this? F a s d In a way that doesn't further stigmatize the people who are affected. We're working on that on me. Personally, I think of being I've been invited to a few other states to kind of share stories, and I want to take a more national, um, position to be able to get outside of Indiana and do some work on a more national level,

spk_1:   1:10:22
because I think you should, because I think you could just hear the passion. Um, I've had the privilege. You've been a champion of mine, and I have been to Indiana twice because of U. S. So you know, so thank you so much for that. And, ah, anything that I could do to help, and I really I'm so appreciative that you just came on and you said, What are we going to talk about? And I said this We're just going to talk because you're you're so wise. And I just hope if the folks Aer listening Really? Take heed to what you're saying because it would lessen their learning curves. So, Susan, thank you so much for

spk_0:   1:10:57
joining you today. Hey, thanks, Jeff, for having appreciate it.

spk_1:   1:11:00
You know what, poet man? I just want to thank Susan again for joining me. That was incredible. I was, you know, not in my head the whole time. She's a fantastic lady, and I just appreciate her being here. Like, where do we begin? What we talk about? She covered so much again, this is going to be a three or four timer where you're going to have to listen to it again and again to get all these bits. Like for example, uh, I really like what she talked about. She did the hard work of letting go of resentments. That was a huge, huge undercurrent to what she was talking about. She talked about her resentments towards their kids, the resentments towards herself because of the expectations. What a huge word. One of the best things I've ever heard about expectations are was from an adult on the spectrum. And she said expectations or just premeditated resentments. You know, people expected things over. She wasn't able to do it because of you know, the organic brain damage and people started to resent her. I did that. I resented my foster kids. I resented my own sisters, who I believe are on the spectrum as well. She talked about not only the that these kiddos require outside the box parenting, but she said outside the box everything. And you could tell she's been doing this a long time because which he was talking to other people about trying to work on skills and that story. She talked about creating boundaries of for for her loved one. And somebody said, No, it's OK, You don't you don't have to Ah, they could just hug me Ah, and she's like, No, but we can't do that. Ah, and you don't have the back story. You don't need the backstory. And inside it was like hot damn, and that's sometimes you have to be like that and you could tell somebody who's been doing this a long time because you're just tired of it. Try it tired sometimes of explaining it, and in the moment you don't need it. Here we go, and so she just doesn't care what people think of her anymore. And that's that's a big thing. What we think people are thinking about us and what we're after, you know, ready to let that go. And it doesn't mean you're it doesn't mean you're a bitch or an ass doesn't mean any of that. It just means that you're focused on what you need to do and you don't need the back story on. And I think that's Ah, brilliant. And then what? I asked her, What did she do with all these kids and all the chaos? Sometimes it tickles when you're in the midst of it. You just put one foot forward. That's something nice to think about. Just one foot forward. So when you are feeling overwhelmed, you know, that could be one of your mantras. I learned about a mantra. Mantras from another fellow trainer. I lean divine should check her out, and she she her mantras stay soft. Eileen, I had a mantra. I didn't even know it. It was so bringing up behavior, brain, not behavior. So whatever it is, you have to tell yourself. Ah, and she talked about one of the hardest things is being the referee. And if you have multiple kids in your house, no typical kids on the spectrum, it doesn't matter. That's that's tough, always being in the middle and one poking the other and the other one doing this and the other one, that's that's super challenging. And she she talked about managing your own expectations of how toe handle those things. And she also talked about when dealing with the individual on the spectrum. She talked about pausing long enough to see the hurt in their voice, and it also brings me back to their previous week's episode with Aubrey Page. She said, If you're fighting with me, you're probably not having a good day. And then the big one, I thought, was giving up again what people think about us and how we're doing to do what's best for us. So do what's best for you. Do what's best for your family. Don't worry about what your friends and your network think. Don't worry about what the teachers air thinking do what's best for you so that when you come out the other end of this, you're not only mentally well but your ready to move forward and to change again because once we start transitioning out of this, it's going to be another change. Do it's best for you. Do it's best for your family and leave all the other outside noise outside because you are strong. You are awesome and you could definitely do this. And especially if you're here and you're listening to this episode, even you're doing the work. You're putting it in your trying to get better. You're trying to understand more, and that's what this is all about. And the more you understand, the more you can react with empathy and compassion. And we're not engaging because we know engaging leads to raging. And there's nothing worse than dealing with a meltdown and how scary that is and frustrating it can be. And everything takes a hit. Your self confidence. Ah, you know your your negative tone, your negative thoughts when we could put an end to all of this, as long as you're hanging out with the rest of us who are going through this and who are not judging you because you have a really tough job. So if you haven't already, I'd like to invite you to join us. Join us in our free closed Facebook group. Www dot facebook dot com slash groups slash f a s d Forever. There's about 5600 other caregivers and frontline workers all pulling together, all giving immense insight. There's probably not a subject that your deal there's there isn't a subject that you're dealing with, that there isn't another caregiver dealing with that. So again, from the bottom of my heart, thank you so much for being here. I can't believe it's already been 18 episodes and we're going to keep going. I got some excellent guests lined up. We're gonna We're going to even start introducing Ah Q and A. Shows where you could ask a question. Leave a question and we'll do a whole show and I'll just answer to the best of my ability. So until next time, keep up the hard work. Stay, Say I love you