Understanding Pathological Demand Avoidance: Accommodating PDA Needs with Expert Casey Ehrlich

Laura Petix 1:41 Hello, everyone. Welcome to the podcast. I am sitting here today with Casey Ehrlich. I am so excited to have you on the podcast. Thank you for joining us, Casey. Unknown Speaker 1:52 Thank you for inviting me. I’m happy to be here. Laura Petix 1:55 This topic of PDA has been something that has been coming up more and more and more. It’s one of those things where I after the first time I heard it, which was pretty recent and 2021. I had said, I’ve never heard that before. And then after that, it kept I kept noticing it. It’s one of those things where I was like has it been around but I just haven’t noticed it but more and more people have been asking me about it and this has been the one thing in my career as an OT and as a parent coach where I have been like, huh, I I definitely see that and I can identify in the past. The clients that I’ve worked with, I was like they were probably that profile. And I have no idea how you go about supporting that because it seems so counterintuitive to a lot of the things that we know as parents, and even as therapists and educators so I’m so excited to find a trusted resources. I share parents, I share your Instagram with parents all the time and I’m so excited to have you here to ask you all the questions about PDA. So before we get started, I would love if you would just introduce yourself to the audience and how you have a connection to PDA whether it’s professional or personal and let us know your story. Speaker 2 3:18 Sure, so I’m Casey, nice to meet you, everyone. I am the founder of at peace parents which is coaching and education specifically for parents raising PDA children or teens between approximately the ages of three and 17. So we have coaching and education and yeah, it is what I do now. I’m a business owner now as well as providing direct service to parents, which I love. And it’s very, very different. than what I imagined my life would look like. Because actually my background is in international affairs political science, economic development. I spent my 20s I’ve lived in seven different countries and spent my 20s doing international work mostly in South America. And I have I have a master’s degree in international affairs where I met my husband in New York. And then I did a doctorate doctorate degree in political science and social science methodology. And I did my field research and dissertation on grassroots peacebuilding in Columbia, South America, so very different. Although I do bring threads through of intergenerational trauma, reconciliation. I now see some of the threads with like non violence and trauma but at the time that I shifted, I was like, losing I lost my identity as a professional essentially. So I was working for a large research nonprofit that does policy work in Washington, DC I was working on a team helping to lead a team that did research integrity, so I managed a team of methodologists and scientists. fact checkers data checkers to ensure that the policy work going to the Hill in Washington DC was accurate and unbiased. But behind the scenes, my life was kind of falling apart as a mother. Um, I had a son who I didn’t really know how to connect with. And I looked around myself and DC to friends and colleagues and wondered how everyone else sort of seemed to be parenting, okay, and not traumatized from it. You know, my husband and I would joke like, everybody else just seems to be hanging out with their kids. And, you know, that sentence now makes sense to me because what I didn’t realize was that I was raising a child with a nervous system disability who needed constant signals of safety in order to stay regulated and undivided attention. And that, you know, all the good practices of parenting were essentially making my son’s nervous system activate and repeated repeatedly so towards the point where he reached nervous system burnout and I believe complex trauma and, and the pattern I see with families is that often a child reaches or teen reaches that point due to a combination of things or one thing which is like strict parenting and a traditional behavioral sense, therapy intensive like ABA therapy, and or really strict or many public school experiences. So, you know, my experience was unique in that it wasn’t school that caused my son to go into nervous system burnout, it was essentially me. Right? And so, you know, I, I have so much compassion for parents I remember, I remember like a form of a family reunion at my at my husband’s parents house in Maryland. And, you know, there were all these family members and it was a very loving situation. We were outside with the pool. And my son just could not engage and he kept melting down and having what I now understand his panic attacks and this was before you know, he reached severe nervous system burnout, but I drove home and I remember standing in my driveway just crying because I was so confused, right because he was social. He made eye contact a lot of the time he was quite verbal and and, you know, every time I went to the pediatrician had concerns about his eating his behavior. I was always like, you need to be strict or you need to be more consistent. And I was just I knew and my mom was hard, like something was not okay. Like, not that he wasn’t okay. But like, he wasn’t thriving. He seemed very unhappy and he was increasingly not speaking. He was increasingly not able to walk like we had to carry him places. He would say his legs don’t work. And then he stopped eating and essentially got to the point where any interaction resulted in full on fight Flight Behavior, and from my perspective, it looked like a feral animal. And I remember telling my husband like this is what a traumatized child looks like. Like this is not behavior like I finally knew in my heart of hearts like and we wondered if something happened at his daycare if he had experienced something and I know other parents who have who have had that question right? So we even explored that but I remember him cowering in corners and like I would try and soothe him and he would bite and hit and kick and scream, and I couldn’t soothe him which had been a theme since he was an infant. So you can imagine the impact on one’s identity as a mother of like, you can’t do the most basic human thing like I couldn’t feed my child, I couldn’t soothe him, etc. So I’ll pause there. I’m happy to go deeper into it. Laura Petix 9:31 It’s so I know there’s people listening that are resonating. With with either the whole story or little bits and pieces. I definitely had a huge connection moment with you and you’re talking about seeing other families and they just get to hang out with their child right. I always share a part of my story where there were moments when I I remember walking, seeing it was seeing a family eating fro yo like on a Sunday like laughing and the Froyo was like melting on the kid’s face and the family was laughing and like, and I was like that that would not be a possibility for my family right now at that time, right when we were living life between meltdowns was the way I described it. So you know, my daughter has a different kind of neuro type but still equally the same kind of feelings of isolation and I called it like, I felt like we were in quarantine before quarantine was a thing because we could not leave the house. We were just stuck. And that envy of just seeing flashes of families just giggling or just coexisting happily. was like what is that like? I would love that and that that is such a hard feeling. So I just wanted to tell you I connected with that. And I know there’s a lot of listeners that connect to that part of your story. So I want to find out at what so you you made the shift something made you understand or see this is a trauma based sword. This is what’s happening from there was like a trauma. Part of his story that you made it to separate from his behaviors and saying this is not a behavioral thing. Right actually Speaker 2 11:13 an OT was very formative in my not with PDA but understanding a different lens. So I had a dear friend from college who was like, come stay with me in Chicago fly with me if you feel like you can fly with your son if you feel like you can. You’ll stay with me she had a son the same age and she set up an assessment with a trusted SLP and OT and like I had never even heard the word co regulation before. Like this was not my area of expertise can you Laura Petix 11:47 get tell me what age your son was? So we can have the timeline of it what’s what what was his age at this time? Speaker 2 11:52 So it was like four and three fourths? Okay, Laura Petix 11:56 okay, so, okay, so not yet in kindergarten unless he was in an early okay had Speaker 2 12:00 been in full time daycare and what was so confusing is that he was very high masking until he wasn’t right so like he was totally quote fine at daycare and actually because his social engagement was a special interest it still is. He was regulated in the like, fairly chaotic environment of a bunch of Laura Petix 12:23 interesting Wow, Speaker 2 12:24 yeah. And he would mask with my mother in law and like eat more sleep more not touch anything and the second we would walk in the her apartment building like his face would change and he would start like being like melting down. Being a whirling dervish hurting himself like it was just like this immediate shift. So yeah, you know, things had been building there. Was one weekend which was Father’s Day. This is before the pandemic where I had started to need to like scoop up my newborn my younger son when we when the panic attack started, but at the time it looked like rages. And I would pick up my newborn and like run out into the street because he would be like in the line of fire or like it was just not safe. And so my husband stayed behind to try and deescalate and he, my son threw through a toy at my husband’s face and so he took the toy was like I’m gonna put this in the basement. You can’t do that right natural response. And when he was in the basement, my son locked, locked him in the basement and started screaming and like, I didn’t have my phone with me. So I was in the street again weeping and a neighbor came by and was like, are you okay? And I was like, no, like, I’m not okay. And it was that Father’s Day weekend that my husband and I were like this like something is happening. And I was like, Okay, I need to quit my job. At the research institution, and we couldn’t afford to live in DC area without two full time jobs. So we decided to look for he decided to look for work in Michigan, where I’m from, or my family is, and that’s how we ended up in a small town in Michigan and me as a full time caregiver. Wow. Yeah. Laura Petix 14:29 Wow. And so so then back to your story, because I pulled you away at his age part. So then you went to visit your friend in Chicago, who was at that time he was not five yet. No, he was. So at that point, there was no sorry. There was no I had no formal evaluation from any sort of Developmental Therapist or expert at that time. Speaker 2 14:55 No, just like okay, I went to the pediatrician. They would be like, well, you’re working too much and you’re not getting home cooked meals on the table, and that’s why he’s not eating or like you need to go to this parenting class like, my husband and I were so ghastly. And this is so passionate about like, yes parents because like we really did go through the wringer like most of my clients and families I work with. And I just, you know, I feel very strongly about putting a logical framework and science and evidence to scaffold a lot of things that parents already Intuit right? But they doubt themselves. Because professionals tell them they’re doing it wrong. So anyways, when I was in Chicago, my friend who is dir Floortime trained and works with learning disabilities and autistic children and she’s just amazing. She, you know, we had I learned about the sensory lens for the first time, I saw what ot was, I learned what co regulation was, and and I watched her parent her son, and it was like the first time I had seen someone parent without consequences and punishments and, and I was also like, the academic that I am, I’m like, Okay, what are the schools of thought in the autism space? And she’s like, okay, there’s ABA. And then there’s like, dir floor time, and these are the two approaches. And like, I saw the same themes playing out that I saw in my discipline of like political science of like, you know, we need these large n samples and everything has to be lots of data. But qualitative methods give you so much more insight into the individual cases. And so I saw this same dichotomy playing out I was a mixed methodologist so I use both. Anyways, I’m getting a little dorky here, but she was my starting point. She was my starting point. And then, you know, I didn’t I worked through the sensory processing lens for about a year without knowing about PDA and then my son’s ot actually was like, you know, I think this might be what’s going on with Cooper. Laura Petix 17:10 They said, the OTS who mentioned PDA to you or she was talking about the sensory piece? Unknown Speaker 17:15 No, no, no, the PDA P Laura Petix 17:17 Oh, okay. Great. Oh, wow. Okay, Speaker 2 17:19 in Michigan. And it was during the pandemic, I was a full time caregiver and I was like, I can’t deal with another acronym. I’m not even feeling so it took me like four months to even fully explore it. And then it was like a veil lifted. Like I understood everything. You know, Laura Petix 17:41 do you remember those first resources like the ones that clicked? And so I want to know that and then I also want to have a follow up with CURRENTLY Right. So is there is it in the DSM? Is it listed under autism? Is it just something that parents and professionals sort of late just identify as that this seems to be what’s going on but there’s nothing official, official way to identify that? Unknown Speaker 18:11 Yeah, so which question Would you like me to answer? Laura Petix 18:14 Let’s talk about the first one. What were the first resources that you went to and that first you said it took you about four months to finally to understand it more? What were some of those first resources that you went to that ended up clicking for you and really giving you that that veil lifting that you talked about? Speaker 2 18:34 Yeah. So the first thing I read was pathological demand avoidance, understanding, pathological demand avoidance, which is a book and I think it’s a pathological demand avoidance syndrome in children and teens. And it was very informative, and totally despairing and devastating because the outcomes that they spoke about were very negative for the families they did like case studies with and it didn’t really present the full picture. Of what was actually going on in the brain. So the next resource I heard was on the 10 Tilt parenting podcast, and I’m going to name it because this is the honest citation in my brain was Harry Thompson and he’s now been deemed problematic and he is problematic. But he wrote the PDA paradox and had an interview and if you want we can cut this out, but that was I read Laura Petix 19:39 his book. I think it’s great to be transparent, both in citing it and then also calling out what we now know there’s so many resources and people that I had, you know, loved their work and learn from and then said, Oh, well, it looks like they’re not, you know, aligned any longer with some of the ways that I now view certain things. So I think that’s a really great piece of that’s transparent, so I like that. Unknown Speaker 20:03 Okay, great. Well, Laura Petix 20:05 I read his Speaker 2 20:06 book, and I was like, this is this is it like this is how my son’s brain works and and then I understood the, the root cause and how it related to the nervous system, which once I understood the root cause everything started to make sense. Right. And then other resources I learned from, you know, I, I found another mom in my area, and it grew to be like a group of moms that was connected during the pandemic and also seeing the patterns and themes that we all dealt with and gave us confidence to know it wasn’t just our parenting. And she and I started a podcast PDA parents which and a website which preceded my business, and it’s still out there if anyone’s interested. Oh, good. Oh, yeah. So the PDA parents podcast. Is me and another mom talking about our experiences. And we just got an influx of people like oh my god, this is my family too. And I had no idea there were so many families out there. And I started doing social media. For PDA parents and I used my like ethnographic skills I was following like, hundreds of autistic ADHD PDA advocates to try and understand all the causal mechanisms and themes in my son’s brain and behavior. So I also learned a lot from Christy Forbes, who is a great resource. I learned a lot from neuro clastic I learned a lot from neuro divergent Lou. You know, all sorts of resources Sally cat who writes on the internalized expression of PDA is really informative. So, you know, before I started my business, I wasn’t necessarily even thinking of starting a business. I was just trying to use my brain in a way that wasn’t the escalating meltdowns because you know, I I had a career and my brain wanted to think about things. Laura Petix 22:15 Yeah, and I think that that even when you were listing your resume your your career history, at first it felt like wow, how did you get from there to here but it’s so amazing how you can still use those strengths. Of your brain to apply it to parenting and probably, if you’re anything if it’s like me, the things that I learned about parenting, my daughter and the styles that I follow and the philosophies I follow, I can even apply in all of my other relationships with other peers and adults and think about people in my past and it’s like all molding and blending of worlds. And I still think I think that’s so fun, how we how we end up here in this particular role at this particular time with this particular child like it just it whatever higher form that people believe in or don’t believe in, I really feel like we are, where we are today and who we are today for a specific reason. So I think that that’s very cool. Speaker 2 23:13 Yeah, thank you. Yes. And I started a business to work with the types of families that yeah, was and so Laura Petix 23:23 there you learned so everything you know now about PDA, and how the best ways to support your child you’ve learned through resources through following autistic PDA voices through their websites, through their social media, and then through experience with your son and are you still I would say it’s more things. Yes. Yes, please add to it. Speaker 2 23:52 So what I learned from the about the root cause was from PDA, or autistic adult advocates. Like this is what’s causing a nervous system, reaction in my brain and body but then I dove deep into the trauma literature polyvagal theory and child development, like Dr. Dan Siegel, Tina Payne, race and to understand like, Okay, if this is a nervous system response, what can we learn about how to actually support this through a body of literature that actually exists? I love that. And then I started, you know, working and coaching with families. So I could start to see patterns and variability, which sometimes can be hard to see if we don’t have a large n sample. Right. So now I’ve worked with hundreds of families and, you know, 1000s have come through my world and so I use that academic perspective. To see the distribution. And then the methodologies that I teach are based on my own parenting, applying the logic that I’ve learned and seen support other families. Laura Petix 25:07 And so you’re You were almost doing your own meta analysis and pulling from lots of different bodies of literature that would fit this picture because none at that time had really existed. And what is the research to date in terms of supporting a PDA child or teen or adults, specifically with that profile? What does that look like? Is there any out there and if anyone wanted to find out more, what’s the best resource for that? Speaker 2 25:37 Yeah, so I think PDA society is the best resource for journal articles on PDA. It’s it’s not so much about parenting PDA, they do have a lot of great resources, but the research is a lot about observed behaviors and whether or not PDA exists, right, which is a little bit different than like, how do we I mean, they have really great handouts, but my perspective on PDA is slightly different than the PDA society, which is not to say one’s better or worse. It’s just I see PDA as a nervous system disability related to a survival drive for autonomy. Okay, the PDA society defines it based on Elizabeth nuisance definition, which is an anxiety driven need for control. And okay, you know, it may seem like we’re parsing semantics in terms of understanding the autonomy and equality piece and the nervous system piece like that’s what I think has been transformative for my family and what I’ve wanted to share with others because it has transformed my son and my experience with him and his well being. Laura Petix 26:54 So would you say it’s fair to classify or talk about it as PDA kids have a dysregulated nervous system that’s perceiving a threat and they need they have that drive for autonomy and the need for control in order to have a felt sense of safety and their nervous system? Is Unknown Speaker 27:19 that almost Laura Petix 27:21 almost add to it, Speaker 2 27:22 please? Yes. So the way I would think about it, because the counterpoint that anyone’s going to make if you say that is like well, don’t all kids need autonomy. Don’t all kids sure felt safe, right? Don’t all kids need to learn, correct? Sure. However, what I believe is different about PDA is that it is a perception of threat that is specifically tied to the loss of autonomy or equality and it sets off a nervous system response that is, is tied to like a survival situation of like, I’m gonna die right and it sets off the physiological response of the nervous system, a fight flight or freeze and what’s unique about it is that that survival instinct and perception related to autonomy inequality, consistently overrides other survival instincts like hunger, safety, toilet, hygiene, and that’s where I define it because in the moment or an accumulation, like over time, it’s actually the nervous system disabling a child from eating, or toileting. Yeah. And so we see a nervous system burnout, things that we’re treating as a medical issue or a behavioral issue that’s actually related to a nervous system, the accumulation of nervous system stress to the point where they can’t access toileting, right? And where the physiological response of fight flight is causing a loss of hunger, right, like it’s not just sensory, it’s actually like the metabolisms is speeding up. And they’re vomiting like my son used to vomit. Still does when he gets too excited. Yeah, when he Yeah, skiing or to a puppy class. Yeah, he Yeah, vomit on the way home because he perceives threat in the internal loss of autonomy from that much excitement. So like interoception can set off yeah, autonomy. Yeah. Wow. This is what I think is the crux of the definition. And I love it because it’s like, it’s very its explanatory. Yes. And it’s it’s an elegant theory as the dorky academic say, because it does explain everything. Like why can’t these kids play alone independently? It’s not because they don’t have the skills it’s because they don’t have the nervous system scaffolding because they’re perceiving threat all the time. So yeah, so it’s like there’s all the paradoxes can be explained by this primary root cause, which I’m very passionate about. Laura Petix 30:05 I love the way you describe that and that definitely gave me a whole new lens to think of it as so I’m glad that you provide me a safe space to ask that question and for educating me so thank you for that. Unknown Speaker 30:15 Questions. Laura Petix 30:17 So let’s bring it to a more applicable approach that parents listen to that are that are here listening. What how how do we parent, a PDA child? I know that’s that’s a loaded question. And that’s why there’s a whole podcast on it and resources. So definitely everyone check that out. We’ll put as many links as we can gather into the show notes, but you had a post recently that I think summed it up very nicely. And I would love to just go through those five tips. You had a post on the top five ways to accommodate a PDA child and if I could, I’d like to just name them out and then have you elaborate on them and give us more background behind it. Yeah. Okay. And so I’ll also put the link to this post in the show notes if anyone wants to see it and then share it out. But so, this these are five ways to accommodate a PDA child and the first one that you said was let the PDA child when the game every time what does that one mean? And give us more information on that? Speaker 2 31:19 Sure. So these are five of the I think the easiest accommodations out of 12 that I teach and before I teach accommodations, I always support parents to learn how to make cost benefit decisions within constraints, because if we’re not radically accepting our constraints with this nervous system disability, we’re applying accommodations to fix it. So I just need to say that I’m gonna get practical, okay. Okay, so, so if we go back to the root cause, which is like, every time the child perceives a loss of equality, which happens anytime they’re losing a game, or they miss a play, or they’re not winning in a board game etc, then we know Okay, their nervous system is going into fight or flight and they’re not in the thinking brain. Right. So our, our intuition or our learning as parents, OTs therapist is going to be like, well, we need to teach them how to lose right whereas the logic is a little different here of like, when we accommodate allow them to change the rules, which is an equalizing behavior, to get back to nervous system safety when we allow them to win in a one on one setting. We’re actually strengthening the pathway back to the thinking brain and maintaining trust and connection, based on that experience, have felt safety and trust over and over and over again. They’re spending more time in their thinking brain and they have the experience of self safety, they can learn and then paradoxically, and I’ve seen this with my son and with other families, they actually do better outside of that one on one setting, because they are more in their thinking brain overall, and they can actually abide by the norms of a game right? This is a long term process. It’s not an in the moment skill based. Does that make sense? Laura Petix 33:20 That makes sense. And I I want to highlight the part where you said you specified in a one on one setting. Yes. So if there were sibling Right, yeah. If so, two follow up questions. If there were siblings or if this were, you know, a social group or a teacher with four kids doing a math or something like that, how you would not apply this strategy at that time. You kind of have to separate this is going to be a learn. This is going to be a an accommodation game where I’m playing one on one with my daughter as a therapeutic style. Versus Yeah, you’re playing with your playdate friends, and you guys are playing Candyland. I’m not going to intervene and we’re going to deal with whatever happens if you lose the game. I’m not going to tell your friends to let you to win that kind of thing. Right? I Speaker 2 34:18 think Yes. Correct. And what and what happens before we get to the accommodation as a parent is I might have decided before the play date came we’re not going to be playing any competitive games. Right, which is the decision making. Right, and this is why it’s hard to you know, everything is oversimplified on Instagram. Laura Petix 34:41 Of course I know exactly. Yes. Yeah. You Speaker 2 34:44 know, so the way I think of it is like, when we’re working with a PDA child, as a parent, especially, we’re not just parenting, we’re caregiving, right? We’re accommodating a nervous system disability. And so, you know, I’ve spent years letting my son equalize and win and change the rules. And over the course of four years, with all the other accommodations, he now spends more time in his thinking brain and his window of tolerance is larger, right, like from the trauma literature, so he’s not going to tip over into like, violence because he’s losing a game. He may have the activation, but he has a window, but it’s a long term approach. So it’s something to experiment with, right? It’s like maybe in an like in an OT setting with his ot like one of the things we do that is really fun is like I ham it up, I bring in humor and I’m like, Oh my gosh, you are so good. Good at this game. Like I can’t believe it. And he’ll like, you know, he’ll have like, 1000 more points than me. But in doing that game, he’s actually working on skills for his like motor plan. Laura Petix 35:58 Right? Yes. And that’s, that’s a really good point, because I talked about that with parents a lot where we’re about to do this activity and it’s working on multiple skills. What is our goal? Is this a fine motor? Are we doing visual perception? Are we doing executive functioning? Whatever we’re trying to target like the main goal, we’re going to accommodate everything. Else, so that even if it’s like a posture thing, like we’re gonna have them sit in a comfortable chair so that I have to think about sitting upright, or I’m not going to care if they’re standing and walking away from the table every five minutes, if that’s regulating them to play the game, which is the goal of this session. So having to think of what’s the goal and if yours is to build connection with your child or to help them you know, executive functioning skills in a game to even turn taking but you could still let them win but you’re taking turns and still practicing it. There’s so many different skills that way. My second follow up question to that is at any point when you’re not playing those games, do you like cognitive like explain to your child you know, when you’re not playing with mom, or do you kind of have to separate you don’t you don’t even call that out? You just kind of so Speaker 2 37:07 here’s what we’ve noticed if like with the data in our own home, and I think a lot of families I’ve worked with have as well. And this takes a degree of trust and experimentation right. Now, I know his threshold, right? So when I play I might not always let him win. It’s now four years into a trusting relationship, but I’m monitoring his threshold of tolerance, like a mother of a diabetic child would monitor a child with insulin, right like I’ve always monitoring. I also strongly believe that many of these kids and teens already have two things and understanding of what they should be doing cognitively and the skills to do it. But they can’t access it because they’re not in the right part of their brain. So I don’t actually need to go back and tell him I what I believe my role is is to support him in learning compassionately, how to manage his disability and in doing so I’m getting him back to his thinking brain so we can actually do that. So you can learn how to man Laura Petix 38:18 and this is where it is really important to understand the different the various neuro types because my daughter who doesn’t have a PDA profile, who has an anxious neuro type and she’s sensory, sensitive and very sensitive to interoception I actually, I don’t teach her how to lose or teach her how to be disappointed. I’m helping I have to have these instances where I she has to experience discomfort in a safe way so that I can help her learn how to regulate those big feelings. And if I if I avoid all those big feelings for her, she’s never going to practice it but she’s not a PDA brain profile kid right? So that’s where it’s so important, I think and why this particular profile feels so different than the ones Yes. And yeah, so Okay, so the second unless you had anything else to add to that, I’ll go on to the second one. Speaker 2 39:13 Yeah, I just wanted to add to your question of like, Do you ever go Do you ever talk Yes. About things afterwards? Yes. Do I do if it’s like a bigger theme? Where I like, you know, like things that are going on between siblings are away he behaved in a certain setting, you know, like where I feel like it’s something we need to address as a family but not little things like losing a game because I see him play games like he plays tackle football on a team. Yes, every game team. You know, he has nervous system activation his dad support them through it as a voluntary coach. But he knows right like he knows how to play by the rules. He just sometimes can’t because of those perceptions of losses of autonomy and equality and it Yeah, activates him. Laura Petix 40:07 Yeah. Okay, so the next tip you listed was stop asking questions and start using declarative language instead. And I saw you use that term again declarative language in a real with some examples. So I would love if you could elaborate on that and tell us what that might sound like. Speaker 2 40:25 Sure. So I’m going to separate this into two accommodations to experiment with because the first thing I usually tell parents is to experiment with not saying anything at all. Laura Petix 40:40 When like, yeah, like for Speaker 2 40:42 example, when I come down for you know, get my coffee I wake up my son’s right before my meditation, and I wake up my younger son who’s not PDA and I like snuggle him I put my face into his like, tummy I like look at him stuck a thumb I like I’m like you’re the sweetest you know, I say all the things I snuggle him I do the things like like a puppy and then with my PDA son, I sit on the floor, and I put myself next to him and I like gently touch him once and then I say nothing to him until he initiates which might not be until I see him in the evening, right because the initiation of conversation can activate the nervous system reaction because of the loss of autonomy and the perception that I’m above him as an authority getting to decide when he speaks. So this is actually facilitated him sharing with me because he’s in his thinking brain. So for example, like if I pick him up for school for OT, I don’t say anything until he talks to me, which is deeply counterintuitive. For someone like me who you know, grew up thinking, talking and joint attention is connection, right and care. So that’s the first thing. That one in the programs that I run is like very low hanging fruit. It’s hard for parents, but they like have so many wins with it. Like Laura Petix 42:14 it’s, I Speaker 2 42:15 didn’t say anything and I got to hear all about like their friends today. I heard Laura Petix 42:21 a tip from I recently interviewed my love from joyful parents I think is her instagram name. And she was talking about how she said I literally have to like bite my tongue or put pressure on my lips to truly not open my mouth and even say a word during some her daughter’s dysregulation. They said, that’s a really good tip because even though if I don’t say anything, don’t say anything, it’s it’s really hard. But yeah, that is it’s a hard thing to do, but it’s a very tangible quick thing to try for a day like let me just give it a shot for today and see how it changes. Yeah. Speaker 2 42:54 And then yeah. So declarative language I learned about from Linda Kay Murphy’s book, the declarative language handbook, which is brilliant. It’s written for kids with learning differences in disabilities. not specific to PDA, but I think it fits PDA parenting and therapy very well, because instead of asking a direct question, like hey, what do you want to do today? More saying, like, we need to figure out what we’re doing today, which is an imperative. You can use a declarative sentence, which is like, you know, I think that I think the donut shop opened, right, like just a statement that they can respond to, or, Laura Petix 43:40 uh huh. Would that count as like, I wonder statements because I use that a lot. Like, I wonder what happened. Earlier are like, I wonder who’s gonna be there later. Kind of just like a narrative. I wonder, yeah. Speaker 2 43:55 Or if like for parents who are listening who have a PDA kid, this is a common one where it’s like, I’m bored. I’m bored. I’m bored. But you suggest something. Laura Petix 44:03 And they’re like, No, Speaker 2 44:04 and they’re like, no, no, no. Yeah. So I generally encourage parents to experiment with like, you can, like Okay, watch your show. Or you can do this. Okay. Also, like with things like putting on shoes, like did you put your shoes on? Go put your shoes on? That’s a direct question. That’s an imperative. So instead of that, okay, I notice you don’t have your shoes on or what I would do would be use no words at all and just like get on the floor with the shoes. And then I might say I can put your shoes on with you, which is also lowering a demand right so yeah, blend all that accommodate. Laura Petix 44:49 Yeah. Yeah, I’m like I use those a lot with my daughter. So it might be it also is mean I think it I think it’s a good way to separate the telling them what to do versus just like, oh, I noticed this room. It’s hard for me to walk across this room like if the room was messy, right. I noticed there’s a lot of toys on the floor today. Like that kind of thing. Right? I notice it almost seems like a passive, right? Like I’m thinking there’s other people in my life who would like just tell me what you want, like what do you like? Why are you being passive aggressive? Just say what you want, right? But that’s how knowing everyone has a different language and different learning style, different communication. It is a communication style. Would you agree that that’s a part of it right? Speaker 2 45:36 Yeah. So can I tell you a funny anecdote that yes, it’s like yes. Usually my husband helps me with the Tech because I’m not great at like setting up the microphone and, and I’m just so used to using declarative language. Like, I have a podcast interview. Honey, like Oh, and then I’m Laura Petix 45:53 like, Okay, Speaker 2 45:54 I have to be on the call at 12 And he’s like, okay. 1246 I Laura Petix 46:02 was like, Babe, like, Speaker 2 46:04 come help me with the microphone. Yeah. Oh, I didn’t realize Laura Petix 46:08 I That’s it. i Okay, I don’t want a name call but I was saying my husband would is the person for sure. He’d be like, okay, so what is it that you need me to do? Like I’m hearing you say these statements, right, like, and a lot of it is me. I’ll be honest, kitchen is a mess. There’s so many dishes and he’s like, Do you need help? And I’m like, No, I’m just complaining. Or sometimes it’s I would like help but it’s so interesting. So that I mean, this is I can ask so many questions, but I don’t want to go to off tangent, but this just makes me think when your brain gets so much in that, you know, thankfully, it was a funny anecdote between you and your your husband, but how hard is it to switch on and off when you have multiple kids with different kinds of communication styles? Because I will say aside from PDA when I talk to families who have kids who are neurodivergent, and neurotypical, and they’re like, Well, how do I handle this? Kids tantrum versus that kids meltdown? And I say generally, I would rather treat I would rather think it’s safer to parent both kids under the same neurodivergent parenting style when we’re thinking of not everything is just a behavior look beneath it co regulate, like it’s safe to just apply it to both rather than treat the neurodivergent kid as a neurotypical right, but it feels like you have to have such different communication styles. When you have multiple kids. Is it really hard for you to switch back and forth or does your younger one learn this new style as well? Speaker 2 47:44 Well, I’ve Okay, so like, here’s where I would separate it. I think I use a ton of the accommodations with my younger son. Just because it’s like how I parent at this point, but besides accommodations, I have a very different decision making process with my younger son, for example, like I do hold stricter boundaries for him around what he can eat. Right like my younger my older son has trauma around food. We’ve spent four years trying to get him past just eating popcorn and Pirate’s Booty. I mean literally like beyond picket, you know, you’re an OT. Like, this is actual, like a medical issue. Yes, yes. And so you know, of course my younger four and a half year old wants to eat popcorn and ice cream for breakfast which I will allow my PDA son because it’s food. And in my head, it’s like what facilitates eating is spelt safety for him and autonomy. And his eating has improved just very slowly. But for my younger son, I don’t have that same cost benefit, which is about decision making rather than my than my parenting style. Laura Petix 49:07 That must be really, it makes sense but the I can see that being hard for some parents to even grasp and then also manage the behaviors between the siblings of full that’s not fair and I want this but I completely see the difference between it I just imagine that coming up and being hard to navigate if the if one doesn’t understand, right? Yeah, the different dynamics. Speaker 2 49:34 A lot of things about what I do in my home aren’t very easy. I think like a lot of the parents I work with like it’s, you know, we’re caregiving also and I and I that’s why I really truly come back to this so nervous system disability a disabled person from accessing his needs, yeah. And wants and so there is going to be some there are going to be some differences with my younger son, and it will be hard and he does get upset. Laura Petix 50:04 Yeah. The next one I resonate with and I’ve this is something that I’ve already started implementing in my home as well is that just let go of the please. And the Thank you. So this is probably hard again for a lot of parents and I just have to call out that so many of the reasons why this is hard is because it’s the way that we were brought up and the way that we were just expected to behave and no one back then really cared about whatever nervous system things many of us were going through. So this is so new, but the concept of not having to force a please and thank you. I would also add to that forcing apologies to that same thing, right there’s repair which is a whole other thing but forcing the I’m sorry, apology. I would also add to that, but if you could elaborate on, on the letting go of please and thank you. Speaker 2 50:58 Yeah, so this relates back to the root cause of autonomy, right? And so whenever we’re telling them you have to say something like, or forcing them to or punishing them because they don’t what we’re doing is activating their nervous system and for me, it’s always like an accumulation, right? Like every interaction is a choice point with my son and it’s like, is it worth it to activate his nervous system which builds to the point where he can’t eat, to have him say please, to look the waitress at the restaurant that like we’ve been to once in the last four years. You know, right, right, right. Could it be an accumulation and so it’s hard to sometimes see the causality because it’s like just one please or thank you. But as those choice points build, and accumulate like what happened with my son going into nervous system burnout and what I see all the time and my educational and coaching practice, I mean, that’s when families usually come to me and our and our business is that there is a cost that’s higher than it appears in the moment. Which, you know, it’s it’s not a normative thing. It’s like actually, your brain like, this is what’s happening in his brain and this is what the outcome could be if I’m not accommodating because I saw it, you know, and I see it. Laura Petix 52:25 And it’s like, it’s one of those things where like, Is this is this the the hill you’re gonna die on today to get them to say, Please, and we’re repeating it over and over again, and then now they’re stressed and you can even enjoy the meal that you went out to? Because you force this word, this word, right? Speaker 2 52:40 Yeah, yeah. Say like to your question about the two different kids. Sometimes I’ll prompt my little one to say, you know, can you say please or thank you? Because it’s just like, if it’s just yeah, when I say hi. But But I don’t make a big deal out of it. Like sometimes I’ll do it. Sometimes I won’t. Yeah, I’m an imperfect parent like the rest of Laura Petix 53:03 mine. You can still you can still model it, right? Like even even when my daughter doesn’t, she’ll ask for something and then she’ll ask for something and then the waiter or someone will provide it and I’ll say thank you, and sometimes she will copy me sometimes she’ll say it under her breath, or and I’ll say it louder for her. So like, there’s still modeling and then we’ll either repeat it or not, or but you can think the server on behalf of your child and you don’t have to make it a thing. Yeah, I think that’s, that’s great. Okay, so the fourth one is let go of structured activities in parentheses. To the extent that you can, and quote strew offerings for engagement, so break that one down for us. Speaker 2 53:49 Sure. So the term strewing comes from the homeschooling community and was a term coined by a woman named Sandra Dodd who I don’t know much about I just like to cite Laura Petix 54:02 who I love. I was gonna say I love I love the citations that’s happening. So that’s great. We’re gonna, we’re gonna link as many of these I’m gonna have to go back and like marked and write out make sure I link all of these because these are great resources. So thank you. Speaker 2 54:15 So So I’ve adapted the concept a little bit to PDA so so what is strewing? It’s the art of leaving things out that your child can gravitate towards, or or not. Right, so like, instead of having a set amount of activities, whether you’re homeschooling and you’re like okay, science and then art and then reading and this is the schedule or if you’re in an OT session, and it’s like, Okay, here’s your laminated pictures, let’s pick them. And we’ll do it in the order that you pick. Like both of those are what I mean by sort of structured which, as we mentioned, like some neuro types need and it’s very supportive. Right? I have more of a linear like, let’s make a friggin plan. Yeah, Laura Petix 54:58 say that is my love language, that is checklists, plan, Speaker 2 55:02 plan B’s Excel sheets, like on our date, so I get it. I’m not against it. But strewing really provides that autonomy, it provides that equality where we can leave out visual cues, like for example, in an OT session, it would be like, you know, you have the hammock swing and maybe you’ve brought in a football because that’s a special interest. And then, you know, maybe you have some artwork on dogs are like cut it out, cut out pictures of dogs, because that’s other special interest. And then we see where the child gravitates, and they might not want to do any of it. And it’s all good, but it’s like a starting point. But you can also do auditory Strewth, which is like, I like to use declarative language just like speaking to my husband and it’s a sentence that my son can tune into and comment on or not, which is an auditory cue to like, a potential thing we could do. A use drew which is like, maybe you as a therapist or you as a mom, you actually start engaging in an activity and they might join you or they might not Yeah, just it’s I like to think of it as an offering like a Laura Petix 56:16 sense of the base. That’s what I that’s what I that’s what it’s making me think of and this is, I don’t know if you do this in your house, but I have a different voice when I’m saying something to my husband that I want her to like listen to, and he and he knows that I’m doing a thing, right? Like she’s if I say, Let’s go to the Aladdin Broadway musical, she’ll say I don’t want to and I’m like, I know she’s gonna love it. She’s the same way with movies. I know she’ll love this movie. But she won’t try a new one. She’ll watch the same one over and over again. So I have to pretend like it’s my movie and she’ll, you know, like, kind of reverse psychology. But I’ll have to say like, Hey, babe, do you would you want to go to the Aladdin Broadway musical with me? Like, you wouldn’t want to go with you? He goes, Yeah, okay, go go. And I’m like, Okay, should I just get two tickets and then she’ll be like, I want to go. And it was like, if it were any other way. She’ll say, Nope, I don’t want to go but there’s a certain voice that I use and he knows I’m like doing the thing. So I’m like, play into it. I know we’ve already I know we already bought three tickets, but you need to pretend like he didn’t. Yeah, Speaker 2 57:19 here’s the PDA. I hate the word hack, but I’m gonna say it. This is where like, when I work with parents, we like deepen of like, okay, like behind the declarative language or the strew. There has to actually be non attachment. Laura Petix 57:36 Okay, so you can’t even want something to happen. No. Yeah. Speaker 2 57:42 Because, like, if, because there’s a perception of the energy behind like, they can tell Laura Petix 57:49 they can intuit that. Yeah, they’re like, I know this is a game I’m not playing into it Speaker 2 57:53 like if I want my son to do something, and I strew it because I want him to join he will perceive that and not do it. So there’s a degree of like, truly letting go that comes with a lot of these accommodations and I view them as like a practice for non attachment. Wow, Laura Petix 58:13 I’m curious how this translates to written text like if you like, eventually, you know when he has a cell phone and we’re texting or if you if you wrote a note on a post it note how that’s different and if it’s worse or better to communicate. With people in our lives, who who maybe PDA if it’s easier to read without any tone, and there’s no misrepresentation or if that’s easier for them to misunderstand as like, you know, a control or or something that were like an imperative statement. I’m curious if if that will end up being something that gets studied or if if adults, PDA autistic people have spoken and said that that’s, you know, if they prefer to be communicated that way, because I could see how, Speaker 2 59:01 yeah, I mean, it can be different with a lot of parents who identify as PDA and I’ve noticed a lot of variability. You know, because like, even in a coaching container, it’s like, do you want to do box or do you want to eat, right? Yeah, yeah. But I do know a lot of families with like tweens or teen PDA errs, who do a lot of communication via text. Okay. Yeah, it’s Laura Petix 59:26 edit, supportive, like and it’s supportive. That’s good to know. That makes sense. Okay, last one is allow them to opt out. So what do you mean by that opt out of what and how does the support a PDA child? Speaker 2 59:43 Yeah, I mean, it’s gonna sound radical, but I’m gonna say that this gets back to the cost benefit, like I believe the transformative connection occurs when we allow them to opt out of almost anything that’s not absolutely necessary for their well being. So like, whether that school going to the grocery store, participating in family events, and that’s, you know, that’s super triggering for parents to hear. I’m sure some of you listeners are triggered, but you’re going to be it’s not going to be quite as triggering to those families who have a child or a teen and burnout because you’ll also know that there’s a way forward, it’s just like the permission. Yeah, like and it won’t be necessarily forever because it’s really rooted in autonomy. Right? But but we can’t start to collaboratively figure things out unless there’s like a truly solid foundation of connection and trust and often that has to be built on the truth that you will actually not force them to do things and that, you know, like I’ve said to my son like, I will never make you go to school if you don’t want to do it. Yeah, right. Yeah. And that’s really hard to say and say, with honesty, because it’s a big loss Laura Petix 1:01:05 for a parent. Speaker 2 1:01:07 So and there’s fear and uncertainty and Laura Petix 1:01:11 yeah, so So does that. How does that sound like so not not school, but like, you wanted to go to the birthday party and the today’s the day of the birthday party? He decides he doesn’t want to go, that’s fine. Is there any like, do you want to call your friend and let him know that you’re not coming or is it I’ll just take care of it. We’ll just stay home like know same thing for soccer practice football practice anything just he you let you ask him if he would like you to RSVP or sign them up for something and at that moment in time, he says yes. But then the time comes and they say no. Yeah, and then you just leave it at that. Speaker 2 1:01:48 Well, that gets into like, I also teach parents how to communicate and advocate like it’s a holistic approach where it’s like, first, we do the decision making, Laura Petix 1:02:00 right Yes, we Speaker 2 1:02:01 don’t like first it’s, and I think what I’m saying here is like often we have to clear the brush of like, we need to really focus on understanding where our child’s threshold is, before we can start to get in that moment to moment negotiation with confidence and often that requires lowering demands and allowing them to opt out to the point that they’re below their threshold. And we know they have more of a window because most of the time we’re pushing them to do stuff way past their threshold, right? So for example, with karate, my son the first time we did it, like I didn’t understand PDA, and I was going through the sensory processing lens without that autonomy and the quality piece, and I would like be like you signed up and you love it. They’re like, why won’t you go right? Like he wouldn’t put his clothes on he would. So I would like push him through it and he would melt down it would be a terrible experience, but then he’d have fun. But then increasingly, he was starting to fight me again. And his activation was increasing and I had the like burnout. I didn’t know what that was at the time is pre PDA awareness. And I knew intuitively like it’s not worth it to force him. Yeah, the second time, we had enough trust where I could use the declarative language, we can talk about it and we can make a plan together ahead of time of like, Okay, what if you decide you don’t want to go, you know, etc. And I look at activities as offerings, which means I have the mindset of like, I’m paying for the opportunity, even if he doesn’t go, which is again, parents are not gonna like that and feel triggered. Yeah, and then I speak to an advocate. I speak to the coach, I speak to a karate instructor. My husband speaks to the football coach, and we say like, these are his needs. He has a nervous system disability and he’s autistic. Is this going to work and I don’t put him in scenarios where I feel like I can’t make decisions that protect his overall physical and mental well being right. And so yeah, if he can’t go one day, he doesn’t go and then I’ll communicate with the person who needs to know. And what I believe is I’m teaching him to manage his disability because when he’s an adult, he’ll have to be the one navigating these situations. Yeah, like, is it a good idea to do this activity? If we’re going to do it, who do we need to communicate with? What language are we going to use? Do we have a plan for if your nervous system activation is too high? How can we approach that without shame? Laura Petix 1:04:53 Yep. And I always tell parents to that. When we’re teaching our kids about their needs and showing that we advocate for them and how it can make it work. Then they when they grow up, they can surround themselves with people who are affirming of their needs. And so they can find friends, find partners. Find a workspace that can advocate for that that can be accommodating to their needs, and they can build a lifestyle that works for them rather than, you know, the common pushback. Even I get I’m sure you get it more than I do as well. This isn’t how the real world works. How are they going to, to do this? And that’s like, such a big, a big, looming cloud for so many parents who I think who might have a kid with PDA who would they’re you’re they’re hearing you say this things and say I would love to just go with the flow and let my kid do what he’s asking you. I would love to just do that. But I’m worried that it’s not going to teach him how to be in the real world. I’m worried that so and so is gonna think of me as this and I’m worried that he’s going to be whatever but I I think they’ll find I’m hoping they find some comfort in hearing what you speak about it and seeing it more as a way of leaving room in their nervous system to be able to have more more thinking brain opportunities for the quote, real world and then they can know how to regulate themselves and to follow an end to find people who help co regulate them in their adult life. Right. Speaker 2 1:06:30 Yeah. And you know, I don’t think we know what a whole generation of accommodated children looks like. Laura Petix 1:06:38 Yeah, Speaker 2 1:06:39 I mean, that’s true. I feel optimistic, you know, yeah, I think that, you know, I don’t want to get too philosophical, but like, for me, it’s like, I’ll never go back to allowing my son to end up in the situation he was in. And if I can help others, parents not end up there. But in my spare time, I’m like, Okay, how can I change this? Like, you know, the world won’t accept them. Okay. Well, instead of worrying about 15 years from now, I’m going to work diligently to make it so that people understand how to accept them, right? Yeah, Laura Petix 1:07:22 yes, exactly. You know, my anxious brain my cat catastrophic brain. I don’t catastrophize around her i catastrophize around like the world and I’m like, You know what, like, there’s asteroids and there’s global warming and like, will we be here in 3040 years I’m gonna parent for today and make her have the best childhood and enjoy this and have connection with her now I don’t even know like that’s what I that’s what I think of in my brain. That’s, that’s, there’s my anxious thoughts coming out. So we Speaker 2 1:07:51 just, we never have control, right? Do we have control over is our own behavior in the present moment. And so that’s what I really try and focus on and that’s why I have a Buddhist practice because always coming back to the present of like, what’s right now like, do I feel Yes, my hands and my breathing? Laura Petix 1:08:12 Yes, that is my focus for helping my anxiety is just coming back to the present as well. So I think that’s a really, that’s a great place to end on for parents. Okay, so thank you so much for all of the information. I certainly learned a lot and we didn’t even get into some of my other questions. But for anyone listening, there’s this other post that she has that I thought was very helpful. I’ll also link it. She talks about the full the four S’s for how to help a child regulate, do you want to just call those out and then I’ll link the post below for people to click on what are those four S’s for how to help a child regulate? Speaker 2 1:08:48 Sure. So I always want to caveat that this isn’t a recommendation. It’s an observation of patterns to help parents make decisions. So okay, patterns I’ve noticed are that there are really primarily four states that regulate a PDA child or teen which is screens another safe nervous system, sensory intense experiences with dopamine and novelty and special interests. So especially if you’re expecting a kid to get off the screen, it’s helpful to think about okay, what safe nervous system special interest and novelty and dopamine and sensory are we replacing it with? So it helps to like structure, unschooling, or weekends to think about those states. Laura Petix 1:09:35 Yeah. Oh, I really liked that. Okay, perfect. So I’ll put the post to that. The link to that post in the show notes as well as the so many other resources that you listed. I’m excited to have all of those for parents. Thank you so much for your time today. Casey. Can you remind everyone where to find you and to binge all of your helpful content? Speaker 2 1:09:55 Sure. So you can go to app peace parents at at peace parents on Instagram, or Tiktok or YouTube? And I think I’m just at peace parents on Facebook. And then I have that the PDA parents podcast and the app Pease parents podcast. Laura Petix 1:10:16 Great. Okay, perfect. Thank you so much for your time, Casey. We will be seeing you around. I can’t wait to see more of your posts. Yeah. Speaker 2 1:10:24 Thank you so much. recording stopped Laura Petix 1:10:28 us that was so good. How do you feel about it? Unknown Speaker 1:10:31 I feel good. I feel Yeah, relaxed and I usually, yeah. Oh, that Laura Petix 1:10:37 makes me happy. Speaker 2 1:10:38 It feels kind of like oh, it’s a 202 No, I thought you were great. Like I said friggin like I didn’t swear. Oh, I feel less vulnerable when I’m more in my professional academic. Oh, I see. I see fun to talk to Oh, yeah. Oh, good. Laura Petix 1:10:57 I’m glad I would prefer that my audience are is more parents and so we they connect more to the parent part of you that happens to have this clinical research background versus you speaking to peers of cuz I feel that way when I have an audience where I’m like, oh, there’s therapists in the audience. I get a little bit more like did I say enough fancy lingo for them but I much more much more casual. So thank you so much for your time. I will let you know the published date and everything like that. And yeah, I’ll be in touch if I if I need anything. Let me know if you have any questions as well. Awesome. Okay. All right. Have a good rest. of your day. Thank Unknown Speaker 1:11:35 you. Bye. Bye. Transcribed by https://otter.ai