Transcription
Hi, and welcome to the At Peace Parents podcast. I'm Casey, and I'm here to empower you in your decision-making as a parent of a demand avoidant child. My goal is to share insights that will generate aha moments and support your connection with your child. I'm a mom of two amazing little boys, one of whom is PDA, and I've worked with hundreds of parents just like you to teach them how to lead their child out of burnout and find the clarity, peace, and sense of community they need.
Real quick, guys, I want to sincerely thank all of you who have left us a five-star review on the podcast. Every time you leave a review, we spread awareness about PDA and help families with PDA kids and teens find stability and hope. Now, let's get on with the episode.
Hi everybody. I'm Casey Erlick, and welcome to Parenting PDA Your Way. I'm a mom of two PDA children and the founder of At Peace Parents. Once a week on Fridays, I coach a parent of a pathologically demand avoidant child or teen to help the parent make progress towards more stability and peace in their home. In doing so, my goal is to support them and you to practice new skills and bring non-judgment, compassion, and maybe a little humor to the toughest situations we all face. Welcome, and let's get started.
Hello.
>> Hello.
Hi, I'm Casey.
>> Hi, I'm Pam.
>> Nice to meet you.
>> You as well. Yes.
>> Where are you tuning in from?
>> Well, I live on Vancouver Island in British Columbia. Right now, I'm here with my non-PDA kid in, um, just outside of Seattle, actually, on a little getaway.
>> Oh, nice.
>> I'm in a hotel room.
>> Very cool. So, it's more morning time for where you are, correct?
>> Yes. Yeah, it's just 10:00. Yeah.
>> Okay. Finished the coffee.
>> Awesome. Feeling caffeinated and right ready to go.
>> Ready to go. That's right.
>> Very good. Well, I have your question here and we can dive right in. I can read it or if you want to reformulate the question.
>> You can go ahead and we can go from there. Yeah.
>> Okay. Sounds good. Okay. Here is your question. Feel like living in purgatory? Not in burnout, but also still very narrow existence and child isn't happy. Twin PDAers, one wants social connection so much, but as they get older and have less experience in the world, he leans towards inappropriate topics, etc., as he doesn't know how to socialize. He is used to hanging out with his twin where it's safe to say mean things, etc. How do I help teach them to be their true self in public while still staying within some social norms? Also, with twin 10-year-old PDAers, I have a hundred other things I could ask Casey about or you about. They have the same core issues, disabilities, but present and react differently, which is so interesting to see. Also makes parenting even harder.
>> Yes.
>> Yeah. So, are you in Seattle with one of your twins, or do you have more?
>> No, no, we have a, a third younger. So, the twins are 10, both PDAs, and a seven-year-old who, for all intents and purposes, so far seems relatively neurotypical. So, I'm just with my seven-year-old. Yeah.
>> Awesome. Awesome. Okay. And your 10-year-old PDA orers, just out of curiosity, are they identical? Fraternal?
>> No, they're fraternal. So, genetically, they're just brothers. Yeah. So, they're they look different and they have they're not identical.
>> Got it. Got it. And it sounds like they have somewhat different expressions of how their nervous system reacts to losses of autonomy and equality.
>> Yeah. I mean, they I guess when they react so differently, it wouldn't be so differently as the fact that one is internalized and one of them's externalized, because that would be definitely opposite. They're both definitely externalized,
>> but it it's just more nuanced, like the way that they both don't react to the same situations the same way. And in the world. One of them definitely seems like he has a harder time and like to the outside world, probably seems like, oh, maybe, you know, that that kids are having a real hard time and that type of thing, that the such high anxieties that shows certain behaviors. And then the other one is just the kid that everybody thinks has a huge attitude problem, and he comes across as very capable, and he's he's he's just really good at putting that mask on and putting up a really big defensive barrier most of the time.
>> Okay, thanks for sharing that. Okay. So, both externalized in the sense that generally their nervous system is more fight-oriented when they're
>> Absolutely.
>> Yeah. Absolutely.
>> And they're both sort of socially motivated.
>> Yes. One of them is does better socially and has had like a couple buddies and that type of thing, but he says that he doesn't like he doesn't care about other people. He's like, "I don't care what those people think about me." Again, that defense mechanism. And then the other one who just struggles a lot more with, seems to really struggle more with anxiety and was pulled from school earlier and that type of thing. You can tell he wants to socialize and he he wants it and he just is just not capable of it. Like he just struggles so hard. And then, you know, over the years now, like this started when they were five, six, and, you know, they had some little friends, type thing, and now they're 10, and, you know, he's been out of school for longer, and he's, you know, doesn't have those connections anymore, and I can tell that, you know, it's not good on his self-confidence, um, on his self-esteem, all those type of things. And I I do feel truly lucky a lot of the time that the fact that they're they do have each other. I can imagine how isolating and like, Moa would be hard on your mama heart to have that type of thing and then not have anybody. But they do have each other. They are best friends and arch-nemesis, depending on the moment of the day. So, yeah, I just, as he progresses and works through this and figuring out how to come out into the world now, like I just feel like if he could build some relationships outside of the house, it would it would help him. Like I think he wants it, but he doesn't want it enough that he will, like he's not capable of like joining a group or
>> that type of thing.
>> Okay. Well, first of all, I want to make sure that we're oriented towards like what you want to talk about. And my perception from your question and what you're saying is that you'd like to focus on one of the twins more than the other because of your concern with self-esteem, self-concept, his ability to socialize over the long term. Is that correct?
>> Yeah. I mean, I think it would be, Yeah, this socialization piece is a great thing to talk about today. I do think that in my mind, I put the twins together a little bit more than that because like one of them like has a, like I said, the anxiety piece that makes him not be able to do it, and the other one who puts up the negative barrier more often, he wants the connection too, and he's a little bit better at it, but I still think that he is quite lacking as well. So, I mean, we can focus on the one that has the bigger issues, and in my head, so many of the things just go together anyway.
>> Well, we, this is your session. This is our time, your conversation. So, I I really want it to serve you. So, we can absolutely
>> I'm sure I'll bring in the other guy.
>> both. Yeah. When
>> So, are they both home?
>> Partly. So, Miles is the one that puts up more of the defensive, and he was going to school. He was going to public school and doing okay. And then Desmond is the one that struggles. Dez Moore, and he's been pulled out of school since grade 1. They're in grade five now. However, about a year and a half ago, we moved to, we were living in a really small town with not a lot of resources in one school, and Desmond was never going to be able to go back to that school ever. So, we moved to a place that had an independent school that for mostly autistic kids. And so, we moved. And since then, Desmond is now going a couple days a week, and Miles is also only going a couple days a week because they, bottom line is that they can't really support both of them at the same time.
>> Okay. So they're like
>> Yeah. So they go opposite days. One goes two days a week, and the other goes two days a week. It's only a four-day-a-week program. So, I mean, that's that's another struggle is because I mean, that can kind of lead into the socialization too, is that, you know, because they're so comfortable with each other, it's, you know, it's like having somebody to equalize with against all the time. If you're in an uncomfortable situation like school, or anytime you have a little bit of discomfort, it's the easiest to lash out on your twin brother. And so, in that respect, it's really hard for, you know, they can have some successful times, like they have tried to go at the same time, but ultimately, it's too hard for this for the school.
>> Yeah. Okay. And how long, Pam, have you been, I I'm making an assumption here, so correct me. I assume they both have an autism diagnosis.
>> Yes.
>> Okay. Do they have other diagnoses, like PDA, or ADHD, or dyslexia?
>> Yes. Yes. Desmond has ADHD and, you know, that coordination disorder and like a couple things like that.
>> Yes. No. Okay. It's mostly the ADHD. And that's definitely a piece that I feel is really harder with him, is you can see just the way that his mind is really battling against each other with like the PDA and the autism and ADHD, you know, with the routine versus no routine, and and all that kind of stuff. I can I can see that that is contributing to his struggles as well. But Miles does not have ADHD, as far as I know.
>> Okay. Super helpful to give us a picture of their unique brain wiring. And how long would you say that you've been really focused on the PDA lens versus, you know, more of scaffolding or behavioral modification around the autism piece?
>> It's been like four or five years. We were really lucky. We we came into PDA really easily. We had an amazing OT that right when things were kind of starting to see some struggles, she was like, "Have you ever heard of PDA?" And then was like, "Okay, now you need to go to this assessor." And it's been a very clean line of diagnosis for us, which I feel really thankful for, hearing so many stories.
>> Unusual.
>> Yeah. Yeah. And especially Miles. Miles would have been a kid that he wouldn't have gotten a diagnosis had we not learned so much from the first one. For sure. He again, he would just be labeled as like the bad kid, for sure. So, yeah, around when they were five years old is the time that we learned a lot, and I was our assessor actually, like gave us your name and some other PDA well-known people, and we kind of got on the train like pretty pretty quickly. Also, another like, just interesting thing that I think got us maybe on board with it was that Desmond, through the process of diagnosis, we also found out he had a congenital heart defect, and he had open heart surgery. And right after, he didn't have the diagnosis yet, and right after the surgery, when we did have the assessment, I was like, "Wow, he's been doing so much better since the surgery." Like, maybe it was just part of how his body worked, you know, had his nervous system elevated, that type of thing. And the assessor was like, "No, he's actually just been really accommodated for the last like three months post-surgery, right? Like he hasn't needed to do anything he didn't want. You've been giving handing him his food. He's been eating whatever, you know, like all of the things that that you talk about, basically." And we were, it kind of like made me realize I was like, "Oh, wow. Yeah, I guess it wasn't the the physical part of the surgery. It was actually how we were managing like post."
>> And that's a really good insight.
>> Yeah. And so, yeah, he was doing really well for a few months, and then a couple months, and then he was back at school. This was now grade one, and he only lasted about two months in school after that, and we pulled him out pretty quickly after a couple traumatic things. And so, yeah, so I think, of course, I also feel like this is the whole radical acceptance and blah, blah, blah, is that like we we learned about PDA early and have tried to, what we thought, put in these, you know, low demand, low all this stuff, but as you learn throughout the process, is like, you learn a little bit more, right? Like at the beginning, I was like, "That's it, let's pick up the family and go on a camping road trip for six months or six weeks," and, you know, "we'll just spend time together as a family, and that'll really reset everyone." And now I look back and I was like, "That had so many demands for him," you know? But
>> kind of we've been learning as we go with trying to keep in the framework, but obviously we're a lot farther ahead now than we were back then, but we've we've never, you know, done sticker charts and, you know, we we like, we're never involved in any of that kind of thing to to change any behaviors.
>> Yeah. Okay. Okay. Great. So, so the main concern I'm hearing is, so it sounds like you understand PDA quite well, right? You have high awareness.
>> Yeah. I think whenever I meet a family who first talks about demands, I always remind them and have to remind myself that the actual root cause is the subconscious perception of not having autonomy externally or internally. So, even the surgery could have been perceived as an internal loss of autonomy plus the external of being in the hospital that was then offset by all those accommodations. But still was an intense experience. That was a loss of autonomy. And then
>> the perceived loss of equality, or when other people structures, you know, parents, teachers, siblings are above them, like winning, running faster, getting the last word. Like every single time the PDA brain perceives one of those two things, it's like a drop in the bucket,
>> right?
>> Of the nervous system accumulating. And so most families learn about PDA when the bucket is overflowing and they're in burnout. And then they work really hard with accommodations to create a window of tolerance in the nervous system so they can start to access things like school, like your boys are accessing school, and hopefully basic needs.
>> Yeah.
>> Which is awesome, right? Like it is a nervous system disability. So, right now, you you've set up your life and worked incredibly hard to get them to this point where they're accessing school, some life, and basic needs.
>> Yeah.
>> But
>> but
>> you want to keep expanding the window of tolerance, right? And help them keep coming back to their thinking brain and connection with safe people so that they can continue to learn and grow and develop.
>> Yeah. I think because it feels like it's been so long, you know, you feel like maybe there should be a little bit more growth. I know that's not really the way we're supposed to look at it, but it's just it feels like we've made so many changes and it's been so much time, and they're still like, like I said, they're they're often not, like they're not happy 10-year-old boys.
>> Yeah. So they still have more than one disability, right? They they're autistic, they're PDA, and so we have things that disable them from accessing life in the same way, which can be frustrating because they're, I'm sure they're highly intelligent and aware of what sometimes they're unable to do in the moment.
>> Yeah. So, I feel like this conversation, like the theme in my head that's coming up intuitively is like this razor's edge of like radically accepting the nervous system disability as it is, and believing in growth, change, transformation, neuroplasticity, and possibility. Right. And I think we, you know, that is the razor's edge as a mother, because we're constantly discerning, am I, am I trying to push too far? Am I expecting too much? Versus, am I accommodating too much,
>> right?
>> And I should be encouraging.
>> And every time I feel like I am trying to, with the PDA lens, like make a little bit of a step forward, it's just sometimes it works, and some, it's always the like two steps forward, one step back, constantly.
>> Yeah. Yeah. Three steps back, you know.
>> Yeah. Okay. Let me ask you one more question, and then we'll dive into how to think about this. So, are they expressing to you or each other? You say they seem unhappy, but like, how do you know that? And is it related to not being as social as they would like to be? Or is it more your observation that they don't have friends, and that's stressful?
>> Um, I think it's probably a little bit of both. Miles definitely has been saying that he feels like low and what he knows as depressed. He did have a couple friends where we moved from, and now doesn't have that. And he's actually saying that he wants to, because the school he's in, he hasn't connected with anybody there. And he he's now saying like, "Oh, I want to try someplace else to have it like it was when we were at the other place." And Desmond doesn't really verbalize it quite the same. But I can tell, like when we're just like, if we're in a social situation, like even at Christmas with cousins, he he really wants to hang out with them. Like I think he gets a lot from that social interaction. He doesn't outwardly say, like, you know, "I'd feel better if I had friends." I don't think he can quite fully grasp that. But he is also definitely jealous of the connections that Miles has and will say like, "Oh, well, I just don't have any friends."
>> Yeah. Okay. And how much have you talked to them about PDA?
>> They are very aware.
>> They're very aware.
>> Yeah. And, you know, when I try to talk about, you know, obviously putting a more positive spin on it and talking about the strengths of it, they'll always, especially Desmond, will just say, "Mom, the only reason you can say anything good about PDA is because you don't have it." Um, like he definitely feels it.
>> Yeah.
>> And we try to, you know, they know about equalizing and like we've tried to use all that stuff to to for everybody to understand things better. So they they are quite aware of it and they know that they're autistic and that type of thing.
>> Yeah.
>> Been open about that from the beginning.
>> Yeah. Okay. So, there's a couple things that are coming to mind, and I I completely get this because Miles sounds very much like my older son, Cooper, and Desmond sounds more like my younger son, who's much more gravitates towards like Minecraft and video games and right now home and doesn't want to leave the house. And, you know, my husband and I were talking yesterday actually about how like with Cooper, what sort of pulled him out of that recovery state into equilibrium was his special interest in other people. And when that's not present, you know, like with William, we see more like there's not as much of a pull to leave the house to be with
>> others. And he also seems to have more of that like sensory overwhelm, people energy overwhelm. Like even from kindergarten, he would like be on top of the playground and like other kids would want to play, and he'd like not want to be around other kids.
>> But once friends like, you know, when his brother has friends over, wants to be around it. So I think the thing about PDA, and this might be a little different because both your children do have autism diagnoses, and I don't know exactly what degree that disables them in social communication, but the way I think about it with the PDA lens first is like, often PDAs, not always, will have the social skills and understanding that they need to operate socially, but in the moment of socializing, they go into their survival brain and can't access those skills.
>> Yeah.
>> Right? Or like, you know, they understand like, "Don't call someone stupid," right? Cognitively, like it's not complete oblivion to that social norm, but if another kid, I'm going to make it a little kid example, takes their toy,
>> Yeah.
>> or, you know, does something in a game they're playing that they don't want, like grabs the video game first, the handheld thing, they might autonomically and automatically be like, "You're stupid. Give it to me." So that's not a lack of skill.
>> It's the response.
>> Yeah. That's a threat perception, right? And so for PDAers, what improves that over time is reducing the threat perception. And that's cumulative, right? And so right now, it sounds like both of your boys are close to that threshold where when they do get into social situations or at school, it's like they may tip over or not into the like nervous system-driven behavior that they don't necessarily even want to be doing.
>> Right. Yeah. Miles can verbalize that. He'll be like, "I didn't mean..." Yeah. He can. He's aware of that. But yeah, it feels like they are definitely on the edge a lot of the time.
>> Yeah. And so the question becomes like, given that they understand themselves, the question becomes like, is this this is going to be a triggering question, and I don't know the answer, but like, is this just their level of disability?
>> Yeah. And we want to work on accepting that and maneuvering within that as a constraint, or or is it more the accumulation of stress, and there's areas that we could look to to increase autonomy and equality rather than demands, but autonomy and equality like at the very root of their life.
>> That makes a lot of sense. And I think I think I got one of each. Like, I I feel like Miles has more of the skills and needs the bigger window in order to stay there. He he's better at masking, he's better at that kind of thing, and is more aware. And I think Desmond, I see that it's probably a bit more of his disability. I would still like to think that we can like improve on it a little bit for like his so that he he feels more comfortable socializing and can do that kind of thing. But I do see it being a little bit more complicated for him.
>> Yeah. Right now.
>> Yeah.
>> Okay. So up until this point, so I think it's important that you're naming this because when we started, it was sort of like the twins were in the same category,
>> right?
>> And so I think perhaps we can start at a different starting point of expectation for Desmond and think about socializing like one or two steps below. Not in importance, but in terms of how we think of it, you know, like if we're thinking about it as a hierarchy, like the ideal is that they're independent and they can connect with others and have reciprocal relationships and joint attention and all that stuff. But if we could kind of dissolve that, like Miles may be more capable of like what we think of in our culture as the desired types of relationships, right? Desmond, we might need to deconstruct that that ideal of how his connections are going to look, especially in the be in this stage, right? So, can we think about things like focusing on parallel play, connections through special interests, virtual parallel play, connections with animals, strengthening the relationship with you and his family,
>> right?
>> And really emphasizing that as equally important and meaningful as friends.
>> Yeah, I can see that. I feel like I've tried to have him like with Minecraft, and he's a has in the past been a huge Minecraft kid. We've just never gotten into that whole like online friendship kind of thing, cuz it's I know it can be a slippery slope with certain things and finding like a safe space for it and stuff. So, we've never, he's never had played online with anybody. We've tried to do some of those out-school classes, if you've ever heard of those, and for whatever reason, they've never worked. We've tried them like many times over the various years, and always usually Minecraft, and I don't know what part of it it is, but he's never been able to do more than one or you know, a few in a row, and then he's like, "That's it," and he turns it off.
>> Yeah. He needs someone to be in Minecraft that he can equalize against, control, and destroy their things and like hit them
>> and then move into a more collaborative play.
>> Right. Yeah. And he's kind of off of Minecraft right now.
>> Yeah.
>> As well, which I've noticed as, you know, he's gotten a bit older, which I I yearn from the for the Minecraft days. So, yeah, I guess we, a good idea would be to look into how he can safely do that on a different platform.
>> Well, I'm thinking less about free-for-all open-source connections and more about, I'm just going to like give you the example of what my younger one sort of needed with socializing as he was coming out of burnout, cuz we did the same thing, like, "Oh, let's try and like, you know, I have a neighbor whose kid is home unschooling, homeschooling, loves Minecraft, can we both go in the same server and they can play together?" We did a social group with the occupational therapists and other kids,
>> but he would sort of like
>> just go in the corner and not want to play in the shared server, or like same thing, out-school. But what he really needed, and I'm thinking about this through the context of having a sibling who's more dominant or externalized, that he may, in order to access feeling confident with socializing, need to have an experience where he can really be above and equalize against a trusted person for an extended period of time. So he definitely has to conform to the other twin a lot of the time. Miles will definitely take the control. And I I feel like Desmond compromises, which, you know, the cumulative demands like that's sometimes I think that when he is accommodating Miles, I'm like, "Oh, that shows that he's got a bit of a window that he's able to do that," because sometimes he doesn't, and then there's like two PDAs equalizing on each other. But again, if he's continually compromising with Miles, he's going to have those cumulative
>> cuz if his, and this is what I think happened with my younger son who's more internalized and easier, quote unquote, he his brain knew it wasn't going to win. Like, if we're just thinking about the amygdala and all its job is like survive, detect threat and survive. It's like, if you have a sibling that's dominant, even if your body wants to go in fight or flight, the amygdala knows, "Hey, we're going to go into freeze shutdown because you're not going to win this."
>> Right.
>> Right. And so he's still getting the activation. It's just not able to come out in the same way.
>> So, we're going to have to brainstorm together, Pam, because you know much more about the context of what he would engage in. But like, if I had a magic wand for Desmond,
>> Mhm.
>> I would want to give him like an hour or two each day where he could engage with someone who would do exactly his special interest, who could he could correct and criticize while he's playing
>> whatever it is.
>> and that person respond with self-deprecating humor, silliness, and like total acceptance to let him offset some of that accumulation because it doesn't sound like there's any place where he might be getting that socially.
>> And it often has to start with the parent, and it's really hard and painful.
>> Yeah, he he does spend a lot of time like obviously one of like we now don't like my hus like a one working person family now obviously
>> and so he does get a lot of one-on-one, but probably not in that self-deprecating type of way. I feel like we use the time with him to try to like work on things and or try to do some learning because he does show interest in doing some schooling type stuff too. Not all the time, but sometimes.
>> Or we play a lot of games, and I I do let him in all the time. He thinks that I've never won a game of Uno in my life, but, you know, he plays a lot more complicated games, especially with his dad, just the more like analytical, I don't even know what they're called.
>> But I'm not sure that he is getting that from that, cuz he still has all those constraints of those. Like he does like to play them, but, um, there would still be a lot of rules and a lot of all those kinds of things to to follow. So I feel have felt like it's been a way for him to like have fun and engage and stuff, but maybe he's not like offloading all of that cumulative stuff in the way that I maybe thought that he was.
>> So what would it feel like? This is going to sound kind of crazy or radical, but like, because you're so far along, I feel like you might be open to it.
>> Open to anything at this point.
>> Yeah, I I understand. What would it feel like to make the whole goal of his time, the one-on-one, not learning per se, not learning skills, not learning to engage, or even like how a neurotypical brain would think of as having fun, but actually allowing that piece of like seeming unhappy and getting to control another person and have that person respond with lightness, radical acceptance, leaning into the controlling behavior
>> for like an hour each day.
>> Yeah.
>> And that's the assignment, you know, like
>> I feel like to to try to do that. I mean, I mean again, at this point, like, why not try anything? When I think about it practically, I have a hard time imagining what that looks like, just in he he's got that real ADHD piece too, right? Like he's the kid that is like piecing around the house being like, "I don't know what to do. I don't like." And obviously being like, "Oh, let's do this. Oh," you know, does not work, in fact makes it worse, as we all know.
>> And, you know, so we try to strew and like we try to do all the things, but he definitely has a hard time figuring out what he wants to do. Like, often times, you just have to like start playing a dice game, and then he'll come over or whatever. So, but like, is that a loss of autonomy if like, but is he choosing to come over because I've heard
>> it's not because, and this is where the energetic piece comes in. So, you just got to be in an energy of offering, like of like, "Okay, he's ADHD. He has trouble with ideation. I'm going to give him a visual and sensory cue of an option."
>> Right. So, it's like he can come or not. Total autonomy.
>> Yeah. So often that's helpful scaffolding, and you can lean even deeper into the self-deprecation by like, you know, "I'm trying to set up the 3D printer and I just can't figure it out," or like, you know, "I keep playing this dice game and like, you know, I'm messing up my math."
>> So it's kind of like an invitation for him to be dominant or know more than you, and we can experiment with it. So, I think what you're saying is like, it's hard to be like, "We're going to do an hour of something," because he, you know, it can be him just walking around criticizing you. That's what what's needed. I know to people listening, it's like they're going to be like, "What is this woman talking about?" But like, we want to have that subconscious sense of felt safety. And it's from that place and being received with like true radical acceptance of what his nervous system is doing for a consistent period of time that I think like he can get into a more learning space or a connected space outside of the home. I think over time, as like he has made progress in different areas that again, you just, it's the fluctuating capacity, and the, you know, you just like think that you should keep on moving along, and really we need to strip that back down again to a certain degree to then build back up the bigger window, which like I kind of knew, but at the same time didn't really know where to like how to do it anymore, you know, because it feels like we have been. But, yeah, I'll have to think about how to, what that looks like for him, for sure.
>> Yeah. And you have been, but now you're also doing two days of school.
>> Mhm.
>> With him.
>> He loves, like, he he wants he wants to go more days, which is so wonderful. It's after so many years of him being home, you know, he's not in a classroom, and he's and he's with an EA one-on-one. Um, but I mean, we're so happy that he has found, and and he, yeah, says that he really enjoys being around people that are more like him. And
>> that's awesome. So,
>> I mean, part of me maybe knows that it's it's just like the baby steps are so small sometimes that you start
>> to, you know, parenting and spiraling and then
>> Yeah. So the thing we always want to come back to that we're tracking is like, how's his nervous system activation? How are how is his access to basic needs, and how is his connection and engagement with safe people? And as long as those three things over longer time horizons continue to improve or stay steady as you add more back in, like a school, right? Like maybe he slowed down on like some of those things, or like you see less engagement when he gets home. But as long as we're not moving backwards, and you're adding back in new exposure,
>> and increasing his frustration tolerance within that, you know, using that window, we can still see that as progress. It's just that if we look at some of the more typical indicators of like academic success, or being, you know, back at school every single day, or how many friends they have, that's going to be an even longer time horizon.
>> Yeah.
>> But everything underneath those things, learning, connection, empathy, understanding, cause and effect, is going to be coming from a regulated nervous system, a window of tolerance, and being in the thinking brain, which we can use the proxy of those indicators to know we're steadily improving on that, or at least staying the same as we add back new things like a move, or a new school, or moving from the home to learning outside the home. So, it does sound like you're still making really good progress. I mean, we didn't go through your indicators.
>> Yeah. I mean, he he definitely has made a lot of progress in the last couple years, and so I need to remind myself of that, and he is he is doing better. I guess it just, he because he seems to want more, it's it's it's just hard. Yeah. And then I and then I look at Miles, and in the last little bit, he's gone backwards to what he his window. So I need to, it It's always like that too, with the two of them. It's always like, it's when one of them's doing a little bit better, the other one can often go back a little bit, which is confusing.
>> How long ago did you guys move?
>> Like 18 months ago.
>> Okay.
>> It hasn't been that long. And last year we were really like, we have no expectations. We just want them to start going and getting comfortable, and we'll build from there. And also like with the move, we were renting, like, like we've moved houses twice.
>> So that's like a a huge thing, especially for for Desmond. He's the kid that is, you know, doesn't like it when we got a new TV, you know?
>> Yeah. Much changed. So in that respect, he's I think that sometimes it's hard to think about like how many micro changes he's had to get used to. And yeah, I mean, I guess the whole like, "just accepting where he is," and realizing that he is doing a little bit better. But this whole radical acceptance thing is very tricky.
>> It is. It is very, very tricky. But I'll tell you, the two things that have helped me and and continue to help me, even on a day like today, like before we got on the call, is just remembering that radical acceptance has to take place in the present moment. Like, we don't have to accept anything about the future because the future is still at play.
>> Yeah. That that's hard too, is I feel like you you try to want to do trying to do all the right things to set him up now because I so worried about the teen years and what that can look like and self-medicating and all these things that I am really quite scared of of the upcoming years. So I think that is also why I I feel this like intense need to like get them at a good place now, you know?
>> But they are at a good place. They are at a really good place. I mean, you've done an amazing job stabilizing and keeping your family stable, even within moves and house changes and a twin dynamic. I mean, they they're in a good place, and you're building on that. It's just the radical acceptance piece comes from like, "My life is really hard, and my kids' life is harder than I wish it was," and can I bring that awareness of that truth and say, like, "This belongs as part of my human experience and theirs," and can I bring non-judgment to my reactions to that and some self-compassion, right? Of like, "I'm angry that my kids have to suffer. I'm angry that I have to suffer."
>> I just don't I just don't know what to do with all of that energy. Do you know what I mean? Like, I I feel I've heard you say these things, and I I try, but it's still just really hard watching them suffer, you know?
>> Yeah.
>> I don't know how you ever like, really get used to it in a way, you know? Uh, I mean, you do to a certain degree, but
>> I don't think you get used to it, but you can develop a practice that dissolves the resistance to it because I think there's two things going on. There's this, there's the pain and of the emotion, the physical sensation, or the thought, and then there's our reaction to the thought of like, "I'm bad. I'm not a good mother. They're never going to be successful. They'll never be independent or have have friends." Right? Like, it's like, we see what's true in the present moment, and it is true. Right now, Desmond's having trouble accessing friends, and Miles has a shorter, a smaller window of tolerance than he used to, and that probably makes behaviors bigger. That's true, right? And like, I can't cite the research, but I heard that like, by sitting with that emotion of like, "Ah, I feel like sadness and pain in my chest," or "I feel tears coming up." Can I sit with that for 90 seconds and not try and avoid it or make a story about it?
>> Because I don't believe that Dez or Miles is destined to never have friends, or that they're not going to grow.
>> Right.
>> But in order for us to as parents stay in the energy of not controlling, we have to accept that we don't have control. Right? And that is the most accommodating thing for a PDA, because it's the energy of true non-attachment.
>> Mhm.
>> Because if we go back to the root cause, they read the energy of "I'm trying to control this," and that reads as "I don't have autonomy, and this person is above me trying to direct my life."
>> Right.
>> Yeah. They they were really into D&D right now, as a lot of 10-year-old boys. And I worked so hard at finding a D&D group, blah, blah, blah. It took months for this group to come to fruition. Gave all sorts of front-loading to them about the kid, like, just all the things. And the first group was supposed to be last night, and they chose not to go.
>> So, it's like you try to set them up, and cuz I was like, "Oh, maybe they'll meet some other kids that I mean, they love D&D. They love playing D&D. I was actually thought that that special interest level would put them past, you know, their anxiety of like starting a new something, you know, and it didn't. So,
>> yeah.
>> You know, and then you're like, "Oh, man." Like, you just try so so hard, but you don't have the control, right? Like,
>> yeah.
>> Yeah. And so, like, how do we move that energy? Like, that's a deep question, right? We could do a couple hours on that one, because it's going to be unique to you. But often the energy gets tangled up in our own experience, like our own neurodivergence, our own nervous system, our own stories we tell from our own childhood. So, there are practices like, you know, meditate. I do meditation, yoga, Havening. I've done a lot of trauma work to try and disentangle what I feel in the present moment and all the other things about that that's going to like keep you stuck,
>> which is the story. "My kids are never going to have friends. They're never going to be independent. I'm not a good mom." Right? Like, that actually isn't objectively true, but that's what it feels like when they don't go to D&D.
>> Yeah. And I mean, I I say that to myself, like, "I know I'm not a bad mom." I mean, even though you still think it a million times, but deep down, like, I know I'm not. Um,
>> but the constant mini failures make it hard to keep that narrative going, you know?
>> Yeah. Yeah, I understand.
>> I'm sure. But I think, you know, for you, you're so well-versed in it. You you have all the tactics, and you've practiced it, you understand it. You know, I think I recommended one experiment, which was like the tactic of using more equality accommodations with
>> Dez
>> deliberately to let him offset that perception of being below, which is probably pretty ingrained in the twin dynamic.
>> Yeah.
>> And letting go of some of the learning and moving forward energy.
>> Yeah.
>> When he's home, right? Because he's really doing stuff at school and in his twin dynamic. And but below and beyond the tactics is really the energetic piece, the like true letting go of like, "Well, what if it's always going to be like this?" Like, "Can I, how would I as a mom still find joy in my life if this is the level of functioning we stay at?" That that's hard. That's hard.
>> Yeah.
>> Yeah. And you know, I've had to go through that thought process with my older son who's doing very well, but I also worry about the teen years, like,
>> you know, we again don't have control, and it is a nervous system disability. And I'm going through it a second time with my younger son. But it's on the other side of that letting go, I think we can actually find some peace. of like, and I think about mothers especially with children who are quite disabled, and they it's not fluctuating.
>> Mhm.
>> And, you know, they have to live their lives with the tradeoffs that that presents, and I think many amazing parents have found joy and meaning even given that circumstance. I think what's hard about PDA is that it's invisible
>> to others. We don't have care teams and support groups and people that can see the disability and therefore give us empathy, and it's fluctuating. So we forget that it is a disability because it's like,
>> "Well, they could do this at this point in their life, now they can't." But
>> we've had lots of good good times and good moments. And it's those when you can see what they're quote unquote capable at that time that you just want more of it. Like I I want more of it for for them, because they seem happy and regulated, and I want more of it for me too, for our family to have a bit more like peace and joy, which is slim pickings a lot of the time, you know?
So the back and forth is is hard. And like with Miles with one of his friends, like I know he's like a perfect gentleman when he's with them and their family, you know, and so like I know he can do it and I know he has that it's just trying to figure out how to access it more readily.
That's hard because but because but you know they've got it, you know.
Yeah. I mean when they're not in their threat perception, which is what disables them mostly. For PDA kids, I say a very controversial nonPC thing, which is like it's often not the social communication skills that are lacking or disabling them. It's a nervous system that's disabling them. Because when they're not perceiving threat, like all the accommodations that Dez had after his surgery, for example, the caregiving that he received and the lowered demands and all of that, you probably saw a lot more quote typical behavior.
Yeah, it was a long time ago now. It's hard to remember, but but probably or but you might have those windows or like when you see them use it up on something they want to do like going with a friend to a trampoline park and then they come home and it's like a different kid. But it's like the real heart is the what's behind the threat response.
Yeah. Yeah. I think I just always need to remember to go like it's okay to go go take the steps backwards in order like that's the only way we're going to move forward to give them that bigger window.
Yeah. And maybe not thinking about it as like backwards. Let me give you an example. My my older son's going to go to a new school next year. He's been doing great at his private school, but he's going to go to a different school. And so like what I've been talking about with my husband and him is like you're gonna need more accommodations. He's probably gonna have more struggles because he's going to be accessing this new thing. And it's not step stepping back. It's just we have to offset what's accumulating. And so we're going to go through a season that's harder.
Yeah. But it doesn't mean he hasn't made progress.
Yeah. Looking at it more broadly like that makes a lot of sense. I think it's easy to get wrapped up in the hard days, you know, and not look at it broader like that. But but that's true.
Yeah. Yeah. You're doing it.
Yeah. Just feels like there's always so much fluctuation. Like now Miles wants wants to try another school and he's motivated to do it. So like maybe that's enough. But like uh it's just like exhausting to think about starting that whole process and and knowing that we will have to accommodate in different ways to go through that season. It's just it's exhausting to think about like you know I know I know we're never going to get there but I just want like a little bit of time where everything's just a little bit more predictable.
Yeah. No, I mean you and me both I totally I totally would love that too.
Yeah. It sounds sounds ridiculous even saying it out loud.
No, it's not ridiculous at all. I think this is what everybody wants. But I think we're also like trained as spiritual warriors in a certain way as parents and PDAers to navigate the uncertainty of life because we've had such intense disciplinary training in a constant life of non-attachment, not knowing exactly what's going to happen the next day and of letting go. And like it is a skill that the more you can see it as such and and recognize like what you're capable of, I think the less you'll feel like something is wrong or it's not going well or you're not doing it right. It's like this is what it is.
Mhm. Yeah. I think we we changed so much of our life with this move. You know, I left a job that I really liked. My like just was like all the things. Um, yeah, we had a really great community and we just moved to a new place and PDA or families don't make new friends super easily because we don't leave the house and so it feels like we made such big strides and I I guess you know we have to look at it more about how how they are progressing even though like maybe the whole family unit isn't necessarily moving like doing as well I guess. I don't know.
Yeah. Well, just for perspective, like I left my former career and it took two full years of total like a move and being a stay-at-home mom to both the boys before I even started like working on PDA stuff in my next that was like my current my next venture. But there was like two years in there where it was like my life is over. I lost my career. I used to live in Washington DC and work in a prestigious nonprofit and now I'm at home, you know, homebound with a kid who can't go to school and like it sucked. But, you know, you will get to the next phase even if your sons stay where they are and they won't, right? Like I know that because I I've met you now and we've been chatting for an hour and I'm like she she's doing it, you know.
Yeah. Yeah. Just need to stay the course and Yeah. Just continue on. There's nothing else to accept that. So
yeah. And and if you can I would not have liked it if someone said this to me in my first two years of being a stay at home mom, but if you can find like some humor in it, you know, of just like
I mean that's my husband and I going now of just like well look at what's happening now, you know?
Yeah, I know. I feel I mean I I feel like I've taken that stance pretty from the beginning just being like, "Oh my god, like look at the crazy life that we have now." And we, my husband and I aren't ones to take ourselves very seriously either. And so, yeah, we try to, it's just hard when you lose, I mean, as as you know, but when you lose a lot of like your selfidentity of like what you know, and have to change that, that's maybe almost even harder than accepting the children's reality, you know,
100%. Yeah. And so you've gone through an ego death, but what's on the other side is like actually probably a lot more freedom for you in terms of how you conceptualize yourself.
Yeah. Maybe. Maybe
no rules. There's no rules anymore,
right? Yeah.
It's more responsibility, but it's also more freedom,
I guess, to be who you are.
Except we can't leave the house very much. So it feels like more constrained.
Here's what I think. I think that like when all of us and anyone who's listening to this, you, anyone who's raising or raised a PDA child, like are we going to look back and be like, "My life was easy and fun and I got to travel as much as my friends and like, wow, I got to go to all these parties and like I loved my big career and all that stuff." Maybe not. But are you gonna be on your deathbed being like, "What an adventure we had, and I'm really proud of the way I showed up to what life gave me." I think you will.
Yeah, that's a good way of looking at it, too. I thought, you know, we were going to be sharing our lives with other families and growing up with our children together and doing things and going on the trips and we used to go camping, you know, like all the things. And it's it's just not like that. I have to realize that it's just a different thing that life's brought to us and yeah try to find the the small joy. I mean, I think I think I've I've been doing that. Been trying to like I do recognize the small wins and the small joys even like, you know, we've sat down at the table, all five of us, to eat dinner like a couple times in the last little bit and even if it ends in disaster, you know, the first five minutes were kind of nice.
I feel like I I can look at that. It's just you get little tidbits and you just want more.
I know. You get hungry for more. I know. Yeah. But um but yeah, it's a good good reminders for sure.
All right. Well, I believe in you. I think you're doing a great job. I'm rooting for Miles and Dez. And I think that experimenting with the equality, like layering on the equality accommodations for Dez.
I think it would help for Miles, too. Like I feel like because he needs to have that feeling of the aboveness and all that without just getting angry at somebody else like without just taking that position over Dez. I feel like maybe if he had more constructive way of doing that that that would be good for him too. So I can see doing that exercise with both of them in different ways.
Yeah. I call it therapeutic equalizing because it's like mindful and intentional and you're sort of like facilitating the equalizing. That could help me too because equalizing sucks and just feeling like you're being like ripped apart by your kid all the time. But like if you go into it being like I just feel like that gives you like an extra little suit of armor to like go into that time with.
Yeah. Set your Fitbit 10 minutes. Let's do some therapeutic equalizing. Totally.
Okay.
Well, keep us updated. It was an absolute pleasure to speak with you.
You as well.
And I know that I actually meant to look up on our study before I got on this call the percentage of families that had twins because I know it's higher than the general population incidence of twins. So, I know there's going to be a lot of families with twins that are excited to hear from you and and siblings, but I really appreciate you sharing your story and your experience with our community.
Anytime. I appreciate getting any advice. So many times over the years, I'd be like, "What would Casey do in this situation?" So, it's lovely to talk to you and to get to get to learn from you.
Awesome. Well, happy Friday and thank you again.
Yeah, you as well.
Bye, Pim. Bye.
All right, everyone. Thank you so much for being here and thank you to Pam for sharing her story and we will see you again soon. Bye everyone. Thanks everyone for being here with me at the at peace parents podcast. This is your source for all things related to understanding, supporting, accommodating, and advocating for your PDA child. To go deeper on any of these topics, check out my course offerings and master classes at the website www.atpaceparents.com. To completely transform the way you think about and relate to your child and to bring peace and stability to your home, join us for the next cohort of the paradigm shift program.