No Strategy Will Fix This: What Actually Helped Instead {EP 260}

Robyn: Thank you so much for joining me here on the podcast today. I'm actually so excited for this conversation to get to know you a little bit better, but also to have everybody listening, hear about your story and hear the hope in it. So thank you. Thank you. I am so curious to hear you know, I went into the club a couple weeks ago and said, Hey, I'd love to bring club members on the podcast, because I want to offer listeners hope, right, that things can get better, and actually things can get better even before your child's behavior gets better, and you were one of the first people to reach out.

Guest Parent: Well, I think it really, it straight away made me feel excited, because I really thought that during those times of feeling so isolated and so alone, so experiencing violence and rages to a point that just was so different I felt from what other people with kids my age, were experiencing. I thought if somebody else could feel and listen to my story and recognize that in their own, that that would have really helped me when I was going through that. So I was excited by the thought that perhaps somebody who was feeling really isolated and alone could hear my story and think that that's actually similar to what's going on for me, and things have got better in my life and for my family. So maybe that's a little bit of hope, because sometimes it is hard to feel hope when you're in that situation, when you don't see things changing, and when every day is so hard.

Robyn: And you even when you reached out to me, you expressed some concern, like, maybe my, I don't remember the words you used, but you know, maybe my story is almost too extreme for folks. And I said, Oh, absolutely not. Like, this is the story of so many other families, but they're all thinking the same thing, you are, right? Like, maybe my experience is too extreme, or is so unusual, or nobody else would would relate to it.

Guest Parent: Well, that's because, you know, in my world, when I would the professionals engaged, and even if I would talk to my family and friends about it, it would just be this look of absolute horror on their faces, even professionals, no one was saying to me, don't worry, we've got this. So I it just seemed so strange and bizarre to be experiencing this for years.

Robyn: Yeah, before we go any further, could do you mind giving folks who are listening just a little bit of background about what you were experiencing in your family.

Guest Parent: So my youngest son developed PANS/PANDAS when he was quite young, about age five, but that started with quite severe tics and OCD, separation anxiety, things like that, and we were lucky enough to have an integrative doctor who thought it was PANDAS,

Robyn: okay, so early on, somebody suggested that could be a possibility.

Guest Parent: Okay, yeah, but living in Australia, it's it's not really known or recognized. And we had other doctors saying that doesn't exist. It's not true. There followed some a couple of hellish years of medication trials, which made things a lot worse. And at about age eight, my son wasn't able to go to school anymore, so he was at home. He was very unwell. And around age seven, I would say he started to be have rages that were aggressive and violent, very, very violent, and that continued. He's now 13, so and things have turned a corner now in the past 18 months. So that's many, many years of chaos, violence, isolation, and just worrying all the time, very hard.

Robyn: Very hard not just for yourself, but for other folks in your family.

Guest Parent: Oh, absolutely so my daughter, who's now 16, it was just heartbreaking, because so much of my care had to be my and focus had to be on him, and she just kind of had to get through. And it was really, really sad. It was sad and awful, and I didn't want that for her. Luckily, I was able to have some good people in place for her, and she was at a school that understood and knew what she needed was rest and respite and a safe place. So she had that which was good.

Robyn: Oh yeah, that's remarkable. That's really remarkable. One of the things that I've really felt from you, especially in being able to, you know, actually talk one on one like this in the last few minutes, is that you seem to have been able to really hold on to the truth that these behaviors that your son was having that at times, were extremely dangerous, violent, yeah, that that wasn't him.

Guest Parent: Yeah, I think that is the biggest thing that I've had, is just an unshakable belief that it wasn't him. I mean, and he, you know, I knew that, and I knew that I couldn't accept that that was how it was going to be for him. I couldn't accept that he would be sedated or that would be the way through. I couldn't accept that pathway for him. And I just would it didn't say all the time. Of course, there were times where I would think, well, this is just the way it is. But then I would get back on track, and I would just be able to believe again that inside him was the real him, and it was having a lot of trouble being there all the time and shining out, and I needed to help him.

Robyn: I'm married to somebody with essentially grown-up, PANS/PANDAS, and there it is easy to sometimes forget, like this person who I love and adore, and I know is a really, really great person is in there somewhere. And I think I just heard you say too that, yeah. Even for you, sometimes it was like, Well, I this is just sort of the way that it is. Or you said earlier to me, like, this isn't survivable, yeah.

Guest Parent: So I and the hard, there were times, big periods of time where he was so violent to me and but also then he would be distraught, and I would have to comfort him. I would then have to care for him. No one was really caring for me apart from myself. So to feel like I'd be in shock and injured, and I would have to be caring for him and comforting him. And at times I would just think, I just want to get in my car and drive away. I don't. I don't want to be comforting you, because you just hurt me. Yes, of course, but yeah, so that that part was hard, and there were definitely times where I wasn't feeling I wasn't feeling it. I was feeling like, I don't want to be around this person anymore.

Robyn: Oh, for sure, of course, you are. I mean, it would be that, it would be so weird, right, for you not, not to feel that sometimes, do you have a sense, and this might be a question where you're like, No, I have no idea. But do you have any, do you have any thoughts or a sense of why you were able to hold on to both. That there could be a part of you that really acknowledged, like, how bad it was, I can't survive this. I want to just get my car and drive away. And then there was another part of you that it sounds like kind of always held on to hope as well as this, like core belief, like, I know he's in there.

Guest Parent: Well, I love learning and reading so and absorbing information, whatever way that is. So I I knew about trauma, I knew how it worked, yes, and I knew about the nervous system that made sense to me, so that that part really, really helped, that was an anchor for me, and it still is, but I did, I do also have a faith, and especially in nature, that really carried me through. I had an emotional support tree. There were times that, the days it was so bad, I would just go out there and just connect with my tree and feel like everything can be okay in the universe, it really can. So that part really helped. I wouldn't have been able to do it otherwise.

Robyn: I actually really love that, because I am aware that sometimes I talk so much about connection and so much about relationship and so much about co-regulation, and then folks listening or that I work with, I think can sometimes feel a little bit of like, Oh no, like I don't really have a lot of relationships, or I don't have somebody that I can turn to for co-regulation. And it is very real that we can develop those relationships and have those experiences with nature, with pets, even with like fictional characters that we, in a way, like develop a relationship with, you know, our favorite TV show that we watch over and over and over again, or our favorite a favorite book that we read, or something. So I actually, personally find it to be so full of hope to think that we can go into our backyard and be with our emotional support tree.

Guest Parent: Yeah, and I really like that in your book, where you talk about being that co-regulation figure. That made a lot of sense to me, because, yeah, just by saturating myself with that material and the audiobook and all the different forms. Then, you know, I those. It's just in you. And so then in the really hard moments, you just might flick into a thought or something that you've said, and that really helps. And I did it with other things too. I've, I've been practicing yoga online for so long. I always just think, Oh, she's just saying that to me. She's caring for me. So you know, you're exactly right. When it feels like there's no one there, there is ways that the that things you're being cared for,

Robyn: So when things are feeling I think, you I know other families who are a lot like yours, right, where there's this sense of, how could this ever get better? Who's gonna help me? I go to the professionals, and the professionals like gaping at me. They don't know how to help. And it is scary, I think, to feel like, oh my gosh, I know more about what's going on with my son than the professionals, correct? Yeah, it's really scary and kind of floundering, and still, despite that, there was this way that you were able to kind of stay connected to this truth of, somehow we're gonna figure this out.

Guest Parent: Yeah, which, and I didn't really have anyone in real life, in my life, that was thinking that I really didn't even you know, my sister's my main but she's my best friend, and she's my co-regulator. We don't live near each other, but we talk every day. And she would just be really concerned and thinking, This can't continue. It just can't continue. And that's what people would say. And I'd say, well, what's the alternative? Exactly, I don't have one. I've got to keep going forward.

Robyn: Yes, I that is always the most curious. Like, thought, right? Like, Well, you're right, this can't keep going. It's like, sure, this is unsustainable. But do you have another option here? So here's this person who's feeling like your primary co-regulator, and it sounds like she's just absolutely amazing. And even still, the sense of nobody gets it. Nobody gets it.

Guest Parent: No one could really see that things could be different. But I remembered him as a little boy. Of course I did, and I somebody taught me this phrase once about and it was, hold them in the palm of your hand, and that's I would just use that mantra, because that, to me, meant holding on to his true essence always. And it really helped I have.

Robyn: I am hearing that from folks, and have found that to be true over the last 20-plus years of working with parents and caregivers and even people eventually can believe that about themselves, right? That like holding on to my kids true essence, or my partner's, or eventually, like I said, like my own, and being able to really anchor into that feels like one of the most important pieces for folks.

Guest Parent: Absolutely, and that reminds me of another strategy that I really embrace, which was being the best friend to myself that I could it changed everything for me, and it just has become a practice that I do all the time. So you know, the part of me that would be so bewildered and hurt I would care for, I would say to that part, this is so hard. This is just so difficult. What can I do? And I would make myself a cup of tea, but not just have the cup of tea, like, really care for myself. You know, self care didn't look like spas or anything, but it could be, you know, just honestly sitting and looking at the clouds for just an intentional few minutes or on, you know, after these periods of dysregulation, or these episodes from my son, you know, I would give myself a hug and and care for myself, and that that helped me trying to be the best friend to myself. Because other then, then strategies flow from that, then I found I could know what to do, how to make the next step. What would help.

Robyn: When we were talking earlier, we touched really briefly on the truth that there is not hardly any resources out there that are telling families who are dealing with physical violence, like when your child is being physically violent, do this.

Guest Parent: There really isn't, and I don't feel like there could be, because it's so unpredictable, ever-changing, and really, really unique to people who are experiencing that. So in my particular case, I couldn't shut myself behind a door, right? I couldn't leave, because his intense OCD rage would focus so much on me that the only way he was going to calm down is if I was there, and I, you know, if, if I shut myself behind a door, it wasn't going to stop; there really wasn't any way that I could do that. So I know the best advice would be to separate yourself from that person, and I understand that, but I actually I couldn't do that, so I had to my best strategy was staying in my real self. Yeah, that's what I tried to do all the time, and it was hard, yeah, really hard.

Robyn: Yeah. I am so grateful that you're willing to share that because I well one understand the desperation of folks who are like, just tell me what to do, just tell me what to do, just tell me what to do. And I also have found it to actually be extremely relieving to folks when they finally can kind of tolerate the truth. That nobody can just tell you what to do. I think it makes it mean like, this isn't your fault. You're not missing some magic strategy that if you could just figured it out, you'd be able to solve all this, you know, chaos.

Guest Parent: Yeah, well, I mean, how can you when there really is. There's no one saying, Oh, do this. Once that's happened to me, I would say to myself, you've got to go upstream. And the thing that I could change and manipulate was the environment plans all of those kind of things, all the things I think I said to you earlier, I do have a practice of writing down things I can control and things I can't control, and then working on what I can control so I could plan the best that I could to set us, us up for success. You know, whether or not that happened, I still could. I could still make small changes. Even despite not having that medical care or anything like that, there was still things that I could do, and that felt really soothing to me. It felt like I was actually it made me feel less hopeless, less helpless.

Robyn: Yeah, that makes sense. You still felt some sense of like empowerment and some agency, some that some action was possible, which makes a lot of sense to me, that that could be, that could help you kind of stay out of falling into hopelessness. Yeah. Do you remember what any of those things were like? What small things do you remember feeling like I can still do this?

Guest Parent: So things? It felt so good to me when I would have small wins, it really, really helped. And it felt like it was shifting things even a little bit that was really good. So, you know, I'd feel so horrified for my daughter. It was so sad like her, the level of trauma was just awful. But then, you know, your sibling series of podcasts was just so helpful, because I was thinking, that's what my daughter's going through, I can see that. And then there were practical steps that I could do for her. And one of the best strategies was from your master class scaffolding helping your kids find their true voice. I know that's not exactly what it's called, but for my son, who's gifted and articulate very can communicate very easily, but I did realize he is not able to express his needs and he's not able to get his needs met. Yeah. So that that one really, really helped. And it did shift things. And that felt amazing to me, because it was something that was helping, and it helped him. Then there was, there were less, less moments of tipping over into dysregulation, maybe not much to start with, but I mean, now we're really in a different place. So it definitely worked.

Robyn: Well, sounds like you were also really able to notice tiny pieces of progress? 

Guest Parent: Yes, definitely I wasn't expecting things to get 50% better by next week. It just wasn't going to happen. I knew it was a long game, and I was prepared to do that, but it really helped when things shifted even a tiny bit doable. This can happen. He can heal from this.

Robyn: Yeah, I really feel like I we kind of keep coming back to this, like this, trust that you had, that he who you knew was precious and amazing and wonderful, that he was there, and you believed that he was still there and wanted and kept seeking him, kept seeking that part of him and trying to give him Some like skills or tools that might help him, like, become that part of him.

Guest Parent: It did. It does help to have anything or anyone that is thinking that as well. So when I read your book, I can see hope there when we finally got proper medical care for him, their belief that things would get better, really, really helped. So it does help to have things resources, or people in your life who are thinking, this is hard, but we'll get through it.

Robyn: Yeah, you're making me remember a practitioner, I personally had a long time ago, like probably well over a decade ago, who said to me, Listen, I'm really good at my job, and we're gonna figure this out, like you're gonna feel better. And it was bordering on arrogant, but it felt so relieving, like I felt so much relief in her, what felt like really authentic confidence. You know, it was like coming from her experience and the work that she done in the past, right? That's like, I, I don't know when we'll figure it out, but stick with me and we'll figure this out together. And for me, how, how anchoring that was, that it makes perfect sense that our kids who don't have quite the same level of, you know, cognition or comprehension in the world, but like, if we can hold on to that truth for them, right? That essentially this, this truth of like, we'll figure this out. We'll figure this out. We'll figure this out. Like, of course, that can feel really grounding.

Guest Parent: Yeah, I was mentioning to you before about because my son that helped as well. I think that, you know, after these episodes, he would just be absolutely devastated. It was awful, like, awful and he would say, what if I never stop hurting my family? What if this never stops happening? And I would say to him, you know, you will, things will get better. And he would say, they won't. I don't believe you. And I said, I'll believe for you. That's okay. I will believe for you and that that will be enough. So I think, I hope that he felt that, that he knew that I believed in him and helped him get through.

Robyn: it's really remarkable that he could articulate that, that he could actually, he could connect with that fear of his right of like, what if I never get better? I think having the history that I have with working with kids with primarily really significant attachment trauma, that they've actually kind of lost the connection to the part of themselves, that could articulate that fear, what if I never get better? And so I know there's probably a lot of folks listening who are like, Oh my gosh, my kid never shows remorse, or would never say something like, what if I never get better? And I want to just kind of jump in and say, like, those are the kids that I know the best, and I actually really believe that they have that terror inside of them as well. They've just really lost the ability to connect with it and then articulate it like your son could.

Guest Parent: Well, that's absolutely true, and one of my older sons quite similar profile, different issues. He never showed remorse, ever. But also I was different back then. I didn't have those tools, so I would be saying, you cannot behave like that. It's unacceptable. Yes, I didn't give him space, whereas with my youngest son, I don't ever do that because it's pointless and it just to me, I could say that it then, you know, things would just step up and step up. Then you're in a conflict. So one of the strategies I never, I'm never in conflict with my son. It's completely pointless. It's not going to do anything. So I, I mean, I never reprimand him or anything like that. And he always apologizes, because he's had that space. I know that because I've experienced the two different ways, and I know which one's more effective. You know, is wait for a good moment and then have a bit of a chat about it. But I wasn't even able to do that in the early years. I one of the things I've I like using metaphors and thinking about things like that. And I just sort of thought, I'm in charge of a nuclear reactor. I have to look at data all the time, all the time. So, you know, every single day I would think, what's happened here? What could help? What did I notice? And so it was very noticeable that if I didn't say anything at all, he would apologize and we could have a chat about it when he was feeling good.

Robyn: I've been able to connect with some other club members on this, on this one, on one level as well. And I'm absolutely feeling this big theme of how that core commitment to I know he's in there, or I know they're in there. I know that this isn't about you can't behave this way. I know this isn't about XYZ strategy. And with that core commitment. It sounds like there's this permission given to yourself to just be.

Guest Parent: Definitely. And then there's space. There's space for things to come out. There's space. There's permission to, I mean, like I always felt like my son, I gave him permission to feel all his feelings that that's true. So and I would, I would really notice what his strengths were. I would, in subtle ways, help him realize that those were his strengths. So one of them is that he has this amazing ability to reflect that I don't see in a lot of grown men. He's, you know, he's, he's able to talk. He knows a lot about his brain because I've, I've taught him that in an indirect way by talking about my own brain, and so, you know, that's been a real strength of his, and I've always thought this will carry him through. He'll be okay. Because of that, whenever I noticed his strength, I thought, you know, this will be fine. He'll be okay.

Robyn: I really love that. Say a little bit more about how it helped him. And it sounds like your daughter as well, to really help them understand what was happening for him and what was happening his brain and in his nervous system and that, yeah, you didn't just sit down one day and, like, pull out a worksheet and say, Let me teach you about your brain.

Guest Parent: Well, yeah, so I knew that I couldn't do that because he-- yeah, I would find out very quickly that, I mean, when he was home from school, I worked out pretty quickly that I wasn't going to be teaching him homeschool. No way. And it didn't happen. Yeah, he did. He didn't do any formal schoolwork for three years. But there was a way I could do it, by modeling it myself in little bits and pieces. So I would say, oh, you know, my my possum brain is just really there today. So, you know, I know I need to get my tea now and over time that became him being tuned into me. So sometimes say, do you need to go and have a tea? And I'd be like, Yes, this is him being really kind, right? But also I could see the terror for him of thinking this is who I really am, and I needed to show him that that wasn't true, and I knew he's really gifted. I knew I could, I could use his intellect through that process. So I taught him about the nervous system, so he understood this is faulty. It's not my fault. My nervous system is faulty, and it can get better. So that was that that helped him build that belief. And then for my daughter as well, she was resistant, you know, she was pretty resentful of him over time, but there would be these brief moments where she would say, Yeah, I do love him, and I understand and  I hate what he's going through. So that helps her find her compassion.

Robyn: 100% and I think the siblings journey is such a tragic piece of the families that I work with, it's this reality of when you have a very ill family member, and whether it's like PAn/PANDAS ill or just have an exceptionally dysregulated kid for some different reason, right? When you have a very ill family member who has a lot of needs and needs a lot of support, other family members are going to suffer because of that. And there's just some, I think, truth and reality to that right in a family, when somebody has a huge health crisis, the other family members suffer, and that's awful.

Guest Parent: That isolation that they feel as well, like my daughter would, she had no one, no friends at all, who understood, and she would try and tell them, and they would say, yeah, my brother is so annoying as well. So that was hard, but she did have school who understood, and she could go and rest in the wellbeing room and things like that. So that helped. But yeah, she felt very isolated, bewildered, and yeah, that was heartbreaking to see, so it's nice now, because they are building their relationship and enjoying some time together.

Robyn: You said something about your son, I do want to, like, circle back to you, because it just really hit me that this. Feeling you had that he just believed he was a terrible person, and how desperately you wanted to help him, like you believed it was so important for him to understand that that wasn't true.

Guest Parent: Well, I also had my own experiences with that, because, you know, similar I'm neurodivergent as well, and just had a very hard time as a young person. So once I read information on the nervous system and understood that, I felt really sad for that young person who believed she was a bad person, and had that reflected in her relationships. So I didn't want him to feel that. I wanted him, you know, knowledge and information made sense to me, and I thought, if he has that as well, then he can separate his real self from these things that are happening to him. That's not his fault.

Robyn: There's like, 1,000,000% true and like, I believe so passionately in what you also just said that, like, if we can find any way to help kids understand, like, get as creative as you need to be, because I understand they're not sitting down on a pen and paper and saying, yes, please teach me all about this. Right? Any way we can figure out to just put little droplets about the nervous system, about behavior, so they can start to see, oh, this isn't who I am at my core. Yeah.

Guest Parent: And it does work, and it can take a long time, but you know what I was saying before, about looking at the data and noticing things? I realized I had a baseline of him wanting to not be in the world anymore. That was where we started, because of how much shame he felt like, how much he was marinating in shame. And then over time, that shifted. So I knew that he was starting to sort of integrate that belief about himself and we, you know, he's just, I really don't hear it anymore at all, and never any thoughts of self harm or not wanting to be here. It just whereas before that was every day. So he it does work. It might take a long time, but it will work eventually.

Robyn: And it's life-saving.

Guest Parent: Absolutely, absolutely. And it's sort of like a bit of a life raft, you know, something to hold on to for that young person or the person you're trying to support.

Robyn: What do you think I'm imagining the listener who's like, wow, this mom, like, this person's really got it figured out, right? Like, I wish I could, like, stay grounded in these beliefs. Like, like this mom is, but I'm also hearing you say, like that's not been your story all along. Right?

Guest Parent: Absolutely not, and even my kids said to me, sometimes, one of my boys, who's 24 said, but you're the most patient person I know. I said, Well, I wasn't always. I've cultivated that, you can too.

Robyn: Yes, yes. Again, there's just so much hope there you can too. And so I hope that that's what folks who are hearing you talk now and also thinking what your older son is saying you like, Oh, you're just the most patient person in the world, or whatever. You know that they're they can maybe hold on to the truth that. Like, well, you worked for that absolutely.

Guest Parent: Yeah, it's, it's you can't decide to to, you know, to be calm, or to know what to do in those moments. It's a practice, and it's work, and it's every day, and it's being a friend to yourself, and all of the things, like even learning about psychological boundaries, was just a game changer for me, an absolute game changer, because, you know, I'd hear about boundaries and I'd think, I can't put in boundaries with this, right? There's no way. There's not one boundary I could put in with him, but I could put in psychological boundaries. So every time I felt like I don't know what to do, I'd just bring it back to myself. What can I do to teach myself? What can I do to help myself? And then things flow from there.

Robyn: I think when we're in situations like you're describing yourself to have been in, in that, when we're forced, there's no alternative to come face to face with this truth that's true for all of us is that we have control over nothing except maybe a little bit over ourselves, correct? 

Guest Parent: And that really helped.

Robyn: Yes, and it is. It's one of those, like, frankly, core universe. Truths, but it is the families that I've worked with in these kinds of circumstances are the ones who are really able to like be with that truth.

Guest Parent: Yeah, and then the radical acceptance. It's a hard one, yeah, I don't want to accept I'm in this position. This is awful. I don't want to be in this position. But if you can practice radical acceptance, then that's when you see some strategies. That's when you see a way forward. I don't think, I think if you're fighting against that reality, I don't think you can see those things.

Robyn: Yeah, this has just been phenomenal. Thank you.

Guest Parent: Yeah, I've really enjoyed it.

Robyn: Thank you for getting up early. You're on the other side of the world, so it's early, early morning for you, and starting your day off this way. And, Oh, also, I guess it's the weekend for you too. Yes, not that we're looking thinking about that, but I mean, this has been inspiring for me, and I'm always really cautious about telling the parents I work with about how inspirational they are. But, you know, I just think it's, it's like, I'm not inspirational. I'm just, like, trying to survive. So I want you to know that I see both truths, but even in my circumstance, it's easy for me to forget how some of these core pieces are so crucial, and it's helpful for me To keep like reorienting back to, you know, because people often are saying, like, just tell me what to do. Just tell me to do, give me skills. And again, I get that, and I try really hard to give people a lot of skills. And the most important thing, really, is finding a way to believe that people are good. Like that, your son is good. You know that when people are regulated and connected and they're experiencing felt safety, their true, brilliant, wonderful self, who's not perfect, you know, gets to shine through, and that that is such a core, core, core part of this journey that is really helping people like stay the course, and that helps remind me to stay the course. Yeah, like to just keep teaching that, keep teaching that, keep giving people experiences to connect with that truth. So I'm grateful for that. 

Guest Parent: That's what I would say, is it's hard when perhaps you haven't started any of these processes, perhaps you haven't done any, and you're in an awful situation, and it just seems like too hard work, but what you're experiencing is too hard work. So if you just keep it small and just keep practicing, keep practicing. It does all integrate. And then changes do happen. It can't help but happen.

Robyn: Yeah, yeah, no idea what the timeline, but I agree with you. You can't help but have it happen, yeah? Thank you. Thank you. So glad you reached out. And I'm so glad that we were able to find this time, because I am. I'm just so aware of people needing to, like, share in our hope, like, I believe in kind of this, like, almost like, global window of tolerance. Yes, that energetically, we're kind of all connected. And those of us that can offer some regulation to that window of tolerance, right, like you've offered here in this last hour. Then the folks who are feeling like, I've got nothing, I'm hopeless, I don't, you know, like that. They're in that terrible, terrible place, maybe it can sort of lean in, yeah? This like, right, yeah. Thank you. This has been really lovely.

Guest Parent: Thanks so much.