Parenting PDA Twins: Socialization, Equalizing, and Radical Acceptance

In this episode, I coach Pam, a mom from Vancouver Island, British Columbia, who has 10-year-old fraternal twin boys — both PDA and autistic, one also with ADHD — plus a younger neurotypical child. Pam's family has been working within the PDA framework for four to five years, recently moved to access a better school, and has found meaningful stability — but Pam is wrestling with a question that so many parents in this community know well: what does socialization look like for a PDA child, and how do I help my son build connections outside the house when his nervous system makes it so hard?

We dig into the differences between her two boys — one who masks well and is more capable socially but has recently been struggling more, and one who visibly wants connection but whose nervous system seems to disable him from accessing it. We talk about the role of the twin dynamic in cumulative nervous system activation, what it looks like to use equality accommodations intentionally — including what I call "therapeutic equalizing" — and why Pam might consider deconstructing what social connection can look like for each boy individually.

We also spend real time on the harder, more personal territory: the razor's edge between radical acceptance and belief in growth, sitting with the pain of watching your kids struggle, what it means to track the right indicators of progress (nervous system activation, access to basic needs, connection with safe people), and the grief that comes with having to let go of the life and identity you thought you'd have. Pam is thoughtful, honest, and deeply self-aware — and this conversation is one I think a lot of families will recognize themselves in.

Key Takeaways

The Twin Dynamic and Cumulative Activation | 00:08:00 Pam describes how her boys go to school on opposite days because they can't both be there at the same time — and how the twin dynamic itself creates a source of cumulative nervous system activation. When one twin is more dominant, the other may move into freeze or shutdown rather than fight or flight, still accumulating stress even without visible behavioral signs.

Deconstruct What Socialization Looks Like | 00:24:27 I suggest separating expectations for each twin individually. For Desmond, I raise the idea of thinking about socializing one or two steps below the cultural ideal — parallel play, connections through special interests, virtual parallel play, connections with animals, and strengthening family relationships — rather than holding the goal of reciprocal friendships as the primary measure.

"Therapeutic Equalizing" as a Starting Point | 00:30:12 I describe what I would want for Desmond if I had a "magic wand": an hour or two each day with someone who would follow his lead, allow him to correct and criticize during play, and respond with self-deprecating humor, silliness, and total acceptance — what I call therapeutic equalizing. I note this often has to start with the parent, and that it's hard and painful.

Tracking the Right Indicators of Progress | 00:36:30 Rather than measuring progress by academic success or friend count, I walk through the three indicators I use: nervous system activation, access to basic needs, and connection and engagement with safe people. I explain that as new demands are added back in — like a school or a move — some indicators may slow without meaning the child is going backward overall.

Radical Acceptance Doesn't Mean Accepting the Future | 00:39:46 I share two things that help me with radical acceptance: remembering it only applies to the present moment (not the future, which is still at play), and distinguishing between the pain itself and the story we layer on top of it. Pam and I also talk about the grief that comes from losing a former identity and what it means to find meaning within the constraints of this life.

Relevant Resources

Tracking Progress — Learn how to measure progress in a PDA child's nervous system.

Finding Meaning — For parents navigating grief and identity loss alongside PDA.

What Is PDA — A foundational overview of PDA as a nervous system disability.

Full Transcript

[00:00:00] Casey: Hi, everybody. I'm Casey Ehrlich, 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 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 nonjudgment, 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.

[00:00:40] Pam: Hi. I'm Pam.

[00:00:42] Casey: Nice to meet you.

[00:00:43] Pam: You as well. Yes.

[00:00:44] Casey: Where are you tuning in from?

[00:00:47] Pam: Well, I live on Vancouver Island in British Columbia. Right now, I'm here with my non PDA kid in, just outside of Seattle, actually, on a little getaway.

[00:00:57] Casey: Oh, nice.

[00:00:58] Pam: Very hotel room.

[00:00:59] Casey: Very cool. So it's more morning time for where you are. Correct?

[00:01:04] Pam: Yes. Yeah. It's just ten. Yeah.

[00:01:06] Casey: Okay.

[00:01:07] Pam: To finish the coffee.

[00:01:09] Casey: Awesome. Feeling caffeinated and right ready to go.

[00:01:12] Pam: Ready to go. That's right.

[00:01:14] Casey: Very good. Well, I have your question here and we can dive right in. I can read it or if you wanna reformulate the question

[00:01:22] Pam: You can go ahead, and we can go from there. Yeah.

[00:01:25] Casey: 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 PDA One wants social connection so much, but as they get older and have less experience in the world, he leans towards inappropriate topics, etcetera, 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, etcetera. 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 PDA I have a 100 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.

[00:02:30] Pam: Yeah.

[00:02:30] Casey: Yeah. So are you in Seattle with one of your twins or do you have more

[00:02:35] Pam: No. We have a a third younger, so the twins are 10, both Pedia Pedia and a seven year old who for all intents and purposes so far seems relatively neurotypical. I'm just with my seven year old.

[00:02:50] Casey: Awesome. Awesome. Okay. And your 10 year old Pedia just out of curiosity, are they identical, fraternal?

[00:02:57] Pam: No, they're fraternal. So, genetically, they're just brothers. Yeah. So they're they look different and they have they're not identical.

[00:03:06] Casey: 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?

[00:03:14] Pam: 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 is externalized because that would be definitely opposite. They're both definitely externalized. Okay. But it it's just more nuanced, like, the way that they both don't react to the same situation 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 kids are having a real hard time and that type of thing, 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 the a real big defensive barrier most of the time.

[00:04:10] Casey: Okay. Thanks for sharing that. Okay. So both externalized in the sense that, generally, their nervous system is more fight flight oriented when they're

[00:04:21] Pam: Perceived. Right? Yeah. Absolutely.

[00:04:24] Casey: Both sort of socially motivated?

[00:04:27] Pam: 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. And 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 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, he's not good on his self confidence, self esteem, all those type of things. And I do feel truly lucky a lot of the time that the fact that they're they do have each other.

[00:05:29] Casey: Mhmm.

[00:05:30] Pam: I can imagine how isolating and like, more it 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 Yep. 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 Yeah. That type of thing.

[00:06:11] Casey: Okay. Well, first of all, I wanna make sure that we're oriented towards, like, what you wanna 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

[00:06:32] Pam: Correct? Yeah. 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.

[00:07:08] Casey: Well, we this is your session. This is our time, your conversation, so I I really wanted to serve you so we can absolutely I'm sure

[00:07:17] Pam: I'll bring in the other guy.

[00:07:19] Casey: Both. Yeah. So are they both home?

[00:07:23] Pam: 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, Des, more and he's been pulled out of school since grade one. 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 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.

[00:08:15] Casey: Okay. So they're like Yeah.

[00:08:17] Pam: 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 that 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, like having somebody to equalize with against all the time. If you're in an uncomfortable situation like school or any time 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.

[00:09:01] Casey: 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?

[00:09:15] Pam: Like p d like PDA.

[00:09:17] Casey: Or ADHD or dyslexia?

[00:09:19] Pam: Yes. Desmond has ADHD and, you know, that coordination disorder and, like, a couple things like Yes. No. Okay. It's mostly the ADHD and that's definitely a piece that I feel is really hard 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.

[00:09:56] Casey: 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

[00:10:17] Pam: Autism piece? It's been 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 kinda starting to see some struggle, 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 diagnoses for us, which I feel really thankful for hearing

[00:10:41] Casey: Some Yeah, of these unusual.

[00:10:43] Pam: 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, 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. Oh my god. Sorry. 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 been needed to do anything he didn't want. You've been handing him his food. He's been eating whatever, you know, like all of the things 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 physical part of the surgery. It was actually how we were managing, like, post. That's

[00:12:16] Casey: A really good insight.

[00:12:17] Pam: Yeah. 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 of 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 months, 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 Yeah. 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.

[00:13:35] Casey: 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.

[00:13:46] Pam: Yeah.

[00:13:47] Casey: 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 the 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 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 we wanna 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.

[00:15:43] Pam: 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.

[00:16:11] Casey: Yeah.

[00:16:12] Pam: Yeah.

[00:16:12] Casey: 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 it's you know, I'm sure they're highly intelligent and aware of what sometimes they're unable to do in the moment.

[00:16:34] Pam: Yeah.

[00:16:35] Casey: 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. 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?

[00:17:08] Pam: Right. And

[00:17:09] Casey: I should be encouraging.

[00:17:11] Pam: 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. Four, three steps back. You know?

[00:17:26] Casey: Yeah. Okay. Let me ask you one more question, 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?

[00:17:52] Pam: 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, wanna 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.

[00:18:56] Casey: Yeah. Okay. And how much have you talked to them about PDA?

[00:19:01] Pam: They are very aware.

[00:19:02] Casey: They're very aware.

[00:19:03] Pam: 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. 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 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.

[00:19:41] Casey: 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, he's home and doesn't wanna 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 wanna play, and he'd, like, not wanna be around other kids. But wants 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 PDA 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.

[00:21:33] Pam: Mhmm. Yep.

[00:21:34] Casey: 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 gonna make it a little kid example, takes their toy

[00:21:50] Pam: Yep.

[00:21:51] Casey: 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.

[00:22:07] Pam: It's the response.

[00:22:08] Casey: Yeah. That's a threat perception. Right? And so for PDA 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 wanna be doing.

[00:22:46] Pam: Right. Yeah. Miles can verbalize that. He'll be like, I didn't mean yeah. He can he's aware of that. Yeah. But, yeah, it feels like they are definitely on the edge a lot of the time.

[00:22:59] Casey: Yeah. And so the question becomes, like, given that they understand themselves, the question becomes, like, is this this is gonna be a triggering question, and I don't know the answer. But, like, is this just their level of disability?

[00:23:20] Pam: Yeah.

[00:23:20] Casey: And we wanna 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. Mhmm.

[00:23:44] Pam: 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 is 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.

[00:24:24] Casey: Yeah. Right now.

[00:24:26] Pam: Yeah.

[00:24:27] Casey: 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. Mhmm. 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 kinda 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 gonna 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.

[00:26:04] Pam: Yeah. I can see that. I feel like I've tried to have him, like, with Minecraft, and he's has in the past been a huge Minecraft kid. We've just never gotten into that whole, like, online friendship kind of thing because 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 at school classes, if you've Mhmm. 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 Yeah. 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.

[00:26:53] Casey: Yeah. He needs someone to be in Minecraft that he could equalize against control and destroy their things and, like, hit them and then move into a more collaborative play. Right.

[00:27:05] Pam: 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 or something like, oh, 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.

[00:27:24] Casey: Well, I'm thinking less about free for all open source connections and more about I'm just gonna, like, give you the example of what my younger one sort of needed with socializing as he was coming out of burnout because 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 therapist and other kids, but he would sort of, like, just go in the corner and not wanna play in the shared server or, like, same thing, Outschool. 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.

[00:28:30] Pam: So He definitely has to conform to the, 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 PDA equalizing on each other. But, again, if he's continually compromising with Miles, he's gonna have those commute cumulative.

[00:29:05] Casey: Because if his and this is what I think happened with my younger son who's more internalized and easier, quote, end quote. He his brain knew it wasn't gonna 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 gonna go into free shutdown because you're not gonna win this. Right. Right? And so he's still getting the activation. It's just not able to come out in the same way. Mhmm. So we're gonna 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 Mhmm. 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

[00:30:12] Pam: Mhmm.

[00:30:12] Casey: 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. Yeah. It often has to start with the parent, and it's really hard and painful. Yeah.

[00:30:36] Pam: He he does spend a lot of time. Like, obviously, one of the like, we now don't like, my husband we're, 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 like him all the time. He thinks that I've never won a game of Uno my life. But, you know, he plays a lot more complicated games, especially with his dad, just the more, like, analytical Yeah. I don't even know what they're called. But I'm not sure that he is getting that from that because he still has all those constraints of those. Like, he does like to play them, but, this would still be a lot of rules and a lot of all those kinds of things to to follow. So I felt have felt like it's been a way for him to, like, have fun and engage and stuff, but maybe he's not, like, off gassing all of that cumulative stuff in the way that I maybe thought that he was.

[00:31:57] Casey: So what would it feel like? This is gonna sound kinda crazy or radical, but, like, because you're so far along, I feel like you might be open to it.

[00:32:06] Pam: Open to anything at this point.

[00:32:07] Casey: 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

[00:32:45] Pam: Mhmm.

[00:32:46] Casey: For, like, an hour each day. Yeah. And that's the assignment. You know? Yeah. Like, that's what you're

[00:32:51] Pam: 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, oh, let's do this. Oh, you know, does not work and, in fact, makes it worse. Yeah. 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, oftentimes, 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

[00:33:39] Casey: Already not. Because and this is where the energetic piece comes in. So you just gotta be in an energy of offering. Like, of like, okay. He's ADHD. He has trouble with ideation. I'm gonna give him a visual and sensory cue of an option.

[00:33:53] Pam: Mhmm.

[00:33:54] Casey: 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 three d printer, and I just can't figure it out. Or, like, you know, I keep playing this die 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 gonna do an hour of something because he you know, it can be him just walking around criticizing you. That's what's what's needed. I know to people listening, it's like they're gonna be like, what is this woman talking about? But, like, we want Des 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.

[00:35:11] Pam: Yeah. 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 I 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.

[00:35:48] Casey: Yeah. And it you have been, but now you're also doing two days of school.

[00:35:53] Pam: Mhmm.

[00:35:54] Casey: With him.

[00:35:54] Pam: 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 a EA one on one. But, I mean, we're so happy that he has found and he and he, yeah, says that he really enjoys being around people that are more like him. And Yeah. 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 Yeah. You start to, you know, parenting and spiraling.

[00:36:30] Casey: Yeah. So the thing we always wanna 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 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 Mhmm. 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 gonna be an even longer time horizon.

[00:37:39] Pam: Yeah.

[00:37:39] Casey: But everything underneath those things, learning, connection, empathy, understanding cause and effect, is gonna 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.

[00:38:17] Pam: Yeah. I mean, that 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.

[00:38:56] Casey: How long ago did you guys move?

[00:38:59] Pam: Like, eighteen months ago.

[00:39:00] Casey: Okay.

[00:39:01] Pam: 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?

[00:39:27] Casey: Yeah. Yeah. Yeah.

[00:39:28] Pam: Much change. 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.

[00:39:46] Casey: 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 doesn't have 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.

[00:40:08] Pam: Yeah. That that's hard too as I feel like you you try to wanna do trying to do all the right things to set them up now because I was 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?

[00:40:35] Casey: 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 kid's 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 nonjudgment 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.

[00:41:27] Pam: I just don't know what I just don't know what to do with all of that energy. Do you know what I mean? I I I feel I've heard you say these things, and I 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? I mean, we do to a certain degree. But

[00:41:49] Casey: I don't think you'll 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 gonna 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 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, I feel, like, sadness and pain in my chest, or I feel tears coming up. Can I sit with that for ninety seconds and not try and avoid it or make a story about it? Because I don't believe that Des or Miles is destined to never have friends or that they're not gonna 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 PDAer because it's the energy of true nonattachment.

[00:43:29] Pam: Mhmm.

[00:43:30] Casey: 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.

[00:43:46] Pam: Right. Yeah. They they're really into D and D right now. It's a lot of 10 year old boys, and I worked so hard at finding a D and 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. Yeah. But it's like, you try to set them up and because I was like, oh, maybe we'll meet some other kids that I mean, they love D and D. They love playing D and 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.

[00:44:39] Casey: 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 gonna 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

[00:45:03] Pam: Are

[00:45:03] Casey: 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 gonna, like, keep you stuck Mhmm. Which is the story. My kids are never gonna have friends. They're never gonna be independent. I'm not a good mom. Right? That actually isn't objectively true, but that's what it feels like when they don't go to D and D.

[00:45:39] Pam: 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. Yeah. But the constant mini failures make it hard to keep that narrative going. You know?

[00:45:55] Casey: Yeah. Yeah. I understand.

[00:45:58] Pam: I'm sure.

[00:46:01] Casey: 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 Des Mhmm. Deliberately to let him offset that perception of being below, which is probably pretty ingrained in the twin dynamic

[00:46:28] Pam: Yeah.

[00:46:29] Casey: And letting go of some of the learning and moving forward energy

[00:46:34] Pam: Yeah.

[00:46:34] Casey: 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 gonna 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?

[00:46:59] Pam: That that's hard. That's hard. Yeah.

[00:47:02] Casey: 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 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, and I think about mothers, especially, with children who are quite disabled, and they it's not fluctuating. Mhmm. And, you know, they have to live their lives with the trade offs 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

[00:48:01] Pam: Mhmm. To

[00:48:01] Casey: 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. No. Like But

[00:48:21] Pam: 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 Yeah. Seem happy and regulated, and I want more of it for me to for our family to have a bit more, like, peace and joy, which is slim pickings a lot of the time. You know? Yeah. 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. I know he has that. It's just trying to figure out how to access it more readily. That's hard because because but you know they've got it. You know?

[00:49:08] Casey: 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 non PC 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 Des had after his surgery, for example, the caregiving that he received and the lower demands and all of that, you probably saw a lot more, quote, typical behavior.

[00:49:46] Pam: Yeah. It was a long time ago now. It's hard to remember, but but probably.

[00:49:50] Casey: Or but you might have those windows or, like, when you see them use it up on something they wanna 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.

[00:50:09] Pam: Yeah. Yeah. I think I just always need to remember to go. Like, it's okay to go take the steps backwards in order. Like, that's the only way we're gonna move forward to give them that bigger window.

[00:50:22] Casey: Yeah. And maybe not thinking about it as, like, backwards. Let me give you an example. My my older son's gonna go to a new school next year. He's been doing great at his private school, but he's gonna 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 Mhmm. Because he's gonna be accessing this new thing. And it's not stepping back. It's just we have to offset what's accumulating. And so we're gonna go through a season that's harder.

[00:51:00] Pam: Yeah.

[00:51:00] Casey: But it doesn't mean he hasn't made progress.

[00:51:04] Pam: 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? Yeah. And not look at it broader like that, but but that's true.

[00:51:18] Casey: Yeah. Yeah. You're doing it.

[00:51:21] Pam: 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, ugh, 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 gonna get there, but I just want, like, a little bit of time where everything's just a little bit more predictable.

[00:51:51] Casey: Yeah. No. I mean, you and me both. I totally I totally would love that too.

[00:51:57] Pam: Yeah. Sounds sounds ridiculous even saying it out loud.

[00:52:01] Casey: 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 PDA ers to navigate the uncertainty of life Mhmm. Because we've had such intense disciplinary training in a constant life of nonattachment, not knowing exactly what's gonna happen the next day, and of letting go. Mhmm. 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.

[00:52:50] Pam: Mhmm. 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 just it was, like, all the things. 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've made such big strides and 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.

[00:53:30] Casey: 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?

[00:54:30] Pam: Yeah. Yeah. Just need to stay the course and, yeah, just continue on. There's nothing else to do except that. So

[00:54:40] Casey: 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, I was just like I mean, that's my husband and I going now. Just like, well, look at what's happening now. You know?

[00:54:57] Pam: 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 self identity of, like, what you know? And have to change that, that's maybe almost even harder than accepting the children's reality. You

[00:55:29] Casey: Know? A 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.

[00:55:43] Pam: Yeah. Maybe. Maybe. No rules. There's no rules anymore. Right. Yeah.

[00:55:50] Casey: It's more responsibility, but it's also more freedom

[00:55:53] Pam: I guess be who you are. Except we can't leave the house very much. So it feels like more restraint.

[00:55:59] Casey: Here's what I think. I think that, like, when all of us, anyone who's listening to this, you, anyone who's raising or raised a PDA child, like, are we gonna 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.

[00:56:34] Pam: 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, we used to go camping, you know, like, all the things. And it's it's just not like that. And we 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 couple of bit. And even if it ends in disaster, you know, the first five minutes were kinda nice. I feel like I I can look at that. It's just you get little tidbits and you just want more.

[00:57:26] Casey: I know. Yeah.

[00:57:30] Pam: But yeah. So good good reminders for sure.

[00:57:33] Casey: Alright. Well, I believe in you. I think you're doing a great job. I'm rooting for Miles and Des, and I think that experimenting with the equality, like, layering on the equality accommodations for Des.

[00:57:50] Pam: I think it would help for Miles too. Like, I feel like because he needs to have that feeling of a top the aboveness and all that without just getting angry at somebody else, like, without just taking that position over Des. 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.

[00:58:13] Casey: Yeah. I call it therapeutic equalizing. Because it's, like, mindful and intentional, and you're sort of, like, facilitating the equalizing.

[00:58:24] Pam: 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.

[00:58:40] Casey: Yeah. Set your Fitbit. Ten minutes. Let's do some therapeutic equalizing. Totally. Okay. Well, keep us updated. It was an absolute pleasure to speak with you.

[00:58:53] Pam: You as well.

[00:58:54] Casey: 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 Mhmm. Because I know it's higher than the general population incidence of twins. So I know there's gonna 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.

[00:59:23] Pam: 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.

[00:59:34] Casey: Awesome. Well, happy Friday, and thank you again.

[00:59:37] Pam: Yeah. You as well.

[00:59:39] Casey: Bye, Pam. Bye. Alright, 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.

Topics Covered

PDA twins
parenting PDA children
PDA and socialization
PDA nervous system disability
cumulative nervous system activation
equality accommodations for PDA
therapeutic equalizing
PDA and school refusal
PDA internalized vs externalized
PDA and ADHD
PDA radical acceptance
PDA window of tolerance
PDA parent coaching
PDA and autism
PDA burnout and recovery
PDA and self-esteem
PDA and twin siblings
PDA and freeze response
PDA and demand avoidance
tracking progress in PDA children
At Peace Parents podcast