Ableism, Parenting, and Trauma Informed Care {EP 85}

Robyn: Marshall, you and I've known each other a long time. Sometimes actually, it's shocking to think that we actually haven't really known each other a long time, but it really feels like a long time. But one of my- there's so many things about our relationship that nourish me and and honestly, have changed my life. And one of I think the biggest ones is the safety we have in our relationship to explore things that are uncomfortable, our- our like mutual commitment to showing up with lots of curiosity, even when it is uncomfortable. And that, I think, describes both of us. And we both grown in such ways that are amazing. And it especially applies to the topic I really want us to dive into today. Because thinking about words like ableism, and disability, and thinking about how that applies in my- just me as a human. Like where is- where are these pieces I didn't even know we're there. And then having to think about how it's applied. How I need to really look at that professionally. Sometimes it's been really hard. And having the privilege of being in relationship with you, safety with you, talking with you, being curious with you, and reading everything you put out into the world and the way you share such important things through your poetry and used to be on your social media. [both laugh] It has changed me and I really just wanted the opportunity to share that with the people who are listening. So I'm grateful you're here. I'm grateful for you. I’m grateful you're here and grateful to know that I'm about to have a conversation that is going to be uncomfortable for me, and it's going to be okay.

Marshall Lyles: It is. It’s going to be okay and part of my gratitude for you is the fact that the subjects that I often need to process in my own life, it- it never occurs to me to hesitate to be able to imperfectly practice coming to know these parts of me in a relationship with you that it just feels welcomed and, and easy. Every once in a while even, I'll think of something that I want to talk to you about and then I feel myself editing it. And this little voice kicks in. Oh, no, remember Robyn’s, not the others. 

Robyn: Yeah. 

Marshall: And then I remember I have permission to kick in. So that says a lot about you. And the role you've served in my life.

Robyn: I love to hear that because I feel of course, exactly the same way. I mean, I think it's, as an aside to what we're going to talk about, just says so much about felt safety and trust. And the way that we've have such deep commitment to ourselves and each other, to know that when we screw up, it's going to be okay. And not like, oh, it's not a big deal okay. But like, oh, we'll address it and be okay on the other side of it. And if that's not the definition of, like, felt safety in relationship, it's- yeah, hard to know, what else could be there. So let's dive in. 

Marshall: I'm ready. 

Robyn: Well, tell us Yeah. So yes, I said, Let's get together. Let's talk about ableism. Let's talk about disability. Let's talk about what that even means. And then let's talk about it specifically, to parenting- to parenting. But especially parenting kids with these behaviors that, you know, that's what's driving people to my podcast, these big, huge behaviors, kids with really vulnerable nervous systems, and kids who aren't acting the way other kids are acting. So let's just start wherever you want to.

Marshall: You know, the first thing that comes to mind is, you while I was listening, listening to you introduce the topic, I realized it really wasn't that long ago, in my life, that I was still really uncomfortable with this subject matter and- and then there's this turning point that I felt as I was trying to more and more become vocal. Because for most of my career, I've tried to cover up, you know, impairments and struggles related to my mobility issues. And even you know, like we've talked about before, in ways that I think differently. People I've just tried to sand off the edges, and be quirky enough, with- without pulling too far out, and, and also not being seen as too needy. And once I started doing some work with actually with Bonnie.

Robyn: Of course, of course,

Marshall: Of course, yeah. Around like how those messages had been internalized from people that I didn't have to agree with anymore. I started opening myself up to naming my experiences differently, and being able to work with them differently. That's when these opportunities to now speak about the subject matter and write about the subject matter just started finding me, you know? It's like the universe is sitting out there waiting for you to be okay enough to step into this mutually benefiting partnership with the world. And, and I- I- I felt myself be welcomed into a bigger conversation that many had been having far before I ever became comfortable with. And so I do find it to be kind of an honor and just loveliness in the fact that we get to be uncomfortable together as we try to figure out what is disability? What is ableism? And what does it mean to be a parent living through and with and around these dynamics?

Robyn: You know, one thing I think I have, I've learned from you, in general, but certainly in the last, I would say like in the last year where I feel like I've watched you be more public about these thoughts and ideas is the concept of compassionate boundaries. And that compassionate boundaries don't necessarily have to sound nice and squishy, that it's okay to have energy and even mad energy. And to use your voice and your power to stand up and say, this is not okay. And it doesn't have to be done in this way that makes it more palatable to other folks. Yet, there is something to be said for a regulated, compassionate boundary coming from a place of power as opposed to like a place of rage.

Marshall: Yeah, I think the way that settles in me is I want to be free to be as angry as situation warrants. 

Robyn: Yes. 

Marshall: And I want to be as individually mixed in my strength and softness, as is allowed by the urgency and the timing and the need, and the welcome of me or the person that I'm advocating for. And I also want to make sure that how I'm needing to show up to respond to something externally, is not then how I carry on the next internal dialogue with myself. And so there's- there's been a lot of work with all of that.

Robyn: Okay, so we could go off on that tangent, but instead, let's, because I love that conversation, I'm gonna write that down. And we're gonna come back and talk about that, because that is something I've been trying to be more deliberate about in connecting and communicating with the parents that I work with. And particularly in The Club, and then in training professionals that I'm training right now to, which is, I think there's a lot of this way of parenting, this movement of parenting, whatever you want to call it, people have so many ways to describe it, that we all ultimately kind of start ending up asking parents to disregard their own, very reasonable human reactions, to extremely strange things that are happening in their home, like you have to respond with love and with kindness and with gentleness and it's like, yes, and your honest authentic human reaction to this thing that's happening is welcome. Let's just figure out how to welcome it and honor it and be an authentic in an authentic space with ourselves in a way that also works for our kids. So let's just make a mental note and come back to that in a different episode because I would guess there's so much that we could learn from that part of describing your journey of like, it's like my righteous anger is valid and welcome. And how do I honor myself and then also use my- my voice and my power in this situation that is helpful. And from a parenting perspective it's- it's- it gets even more nuanced is like and to be helpful to my child who's clearly there's a such a huge power differential. It's different than an adult more mutual relationships. But anyway, I think we have to talk about that, too. But not today. We'll come back to that. [laughter] It's different, a different day.

Marshall: I like pre-planning a dialogue about anger that feels right for me in my temperament.

Robyn: I think you're right. [laughter] You're absolutely right. So going back to Yes, just watching you do exactly that, like find your power. And realize like, oh, no, these things that are happening to me on a- that's just a day to day basis, but like, almost a moment to moment basis is not okay. And I've decided I'm gonna say something about it.

Marshall: Yeah. I've experienced a lot of freedom and reeling more, you know, I've never been shy in letting people know about my illness. You know, that part of me, that practice, as a little kid. But I have been timid about advocating for what I need, and even feeling embarrassed and ashamed. Like, oh, they won't ask me to speak again if I need too much, or am I really am I getting it? not feeling like I'm worth or even former jobs you know that I desperately need them to keep me employed. We have kids and so I- I've been so used to sanding off the meat part related to my- my physical struggles. That it- it was a very empowering, even though it was a shaky turn towards, whenever I started letting myself say a whole body whole mind What do you think disability is? And what- what do you think ableism is? And how has that impacted how you've been shaped and- and by you not working with those parts of you with total acceptance? How has that impacted your family and your clients and your profession? And so then when- when the thinking realigns, you all of a sudden realize that there's an equal opportunity. And when it's more congruent with your whole self, it costs you less than working the other way and thinking the other way.

Robyn: Yes, I mean, even as you're describing that, and also knowing things you've told me about what kind of responses you get, when you let people know, like, if you hire me to speak or to travel, this is what I need. Part of what was happening for me was this kind of sigh of relief, to watch you bring back, like bring it almost out of the shadows, just righteous needs that you have, because you're human on the planet who has needs. And they- you have every right to have those needs and to ask for them and insist that they get met. And to feel into my body this- this sense that could arise of like sheepishness, or I hate to be difficult or just so you know, I need to let you know that if you come- you invite me to speak or whatever it is. And to- to- to- know how that- that- that shame got connected to who you are.

Marshall: Oh, yeah, I remember. Even when I started talking more freely, I mean, most people, Robyn, responded with said such beauty and there was this cool undercurrent of them people saying Do you know what I have? 

Robyn: Yes.

Marshall: The struggle, but I've never been able to let it be seen. And so mostly it was connecting. And then there were the other comments. And you know, I remember this one person said to me that I needed to be careful that my social media had become a bit of a bull in a china closet. And that- that they were letting- they were letting me know that they thought a big part of my brand, so to speak, which is gross for me to even say was people see me as gentle. And that I was really getting in the way of that. And I was like, oh, you're telling me that I can't be gentle and strong at the same time and- and so I- that was when I wrote a little like just a little short poem that said ‘why is it the bull’s fault that the china's so fragile? Like when- when did we decide we're going to let a bull in a china closet and then be mad that it breaks things? Go ahead and toughen up a little bit china’. 

Robyn: Exactly. 

Marshall: And so I- I think that there, I mean, I would never want to oversell that the byproduct of becoming more vocal about your kids’ needs and advocating for yourself or the right set of people with disabilities only brings ease. You know, it costs something you know, and it might reveal issues and relationships and systems that you then feel responsible to deal with and but even in- for- in my experience, even in needing to clean some of those things up and readjust boundaries. I feel prouder of who I am and how I'm moving through the world that I have. It's like okay, if the if those systems and those relationships were not ready to accommodate all of me then what full benefit was I ever actually getting from it?

Robyn: Yeah, in the- in the like infantilization that's- I didn't say that word right.

Marshall: You said it!

Robyn: of how we objectify marginalized people, right? Like I'm imagining this person coming to you with what they convinced themselves was compassion, of like, ‘oh, oh Marshall, I just need to let you know’, which is none of their business in a way. But also just feels so condescending, which then also feels tied to having a observable, physical disability.

Marshall: Yeah, it is. It's really revealing, you know, the subtleties of ableism. Like when you really start understanding that it's not just the big gross, gross as an encompassing, injustices that are very present in our world for people with disabilities, and especially people who also come from other marginalized communities, and carry multiple identities that- that would intersect and bring more and more oppression. That it's not just the big picture struggles, it's these every day little micro-aggressive messages and micro-insults that-. I read once that it's death by 1000, or a million paper cuts, that it's just they just kind of send this constant and subtle message that you don't have as much permission to speak about that as you think you do, or be in your body, to be in your mind. And part of the privilege I have isn't as the fact that white and male. It's that I get to now choose which systems I'm a part of when I think of children who have to be schooled, you know, even though I know many are homeschooled. The kids have to exist in systems, they have to get medical care, they have to, you know, go to what's available, especially families who financially struggle, and maybe their insurance is limited, and they get these three doctors to choose from. But the more- the more you're forced to interact with systems, and the less control you have over being able to update and step away from these voices. That's where my compassion is going. And that's where I want my work to be a part of.

Robyn: Yes, yes. Okay, so but before we go any further, let's just define disability, ableism. Because the way that you articulate this, I think, is going to land in a new way for a lot of people listening.

Marshall: There are lots of- there's lots of professional literature on it. But I've kind of written my own definition just to have it in my voice. And so how- I define disability, I'll read it to you. The unnecessary experience of isolation and struggle, resulting from an uninspired world's lack of empathic forethought.

Robyn: Yeah, read that, again.

Marshall: The unnecessary experience of isolation and struggle resulting from an uninspired world's lack of empathic forethought. visible or invisible, related to body, mind, or both. If there is a part of you that the world has not thought to welcome, that the world has built in structures to make sure that that part of you doesn't easily fit into or have access to, then that becomes a disability. But an impairment or a difference doesn't automatically have to be a disability. If the world were already inclusive, most of our impairments would never move to the social category of being a disability. You know, one point of time, even though I know the world’s still easier for right handed people than left handed people. At one point in time, the way that left handed people were talked about, especially kids was, you know, in disability terms. And then that started falling out, you know. They weren't trying in schools to override it. and force kids to become right hand dominant. And- and so the world- as the world started to become accommodating, that was not seen as an impairment or disability, you know. And so if you just start letting yourself imagine that if every park in the world was built for any body type, in a mobility need, any mind, where there are options and different sensory preferences, you know. Then all kids who show up there, you're not going to find a lack of access or a lack of inclusion, therefore, there wouldn't be a need for the social construction of disability. And that way.

Robyn: So the lack of access, and the lack of inclusion is obviously this one way ableism shows up. Say more what other-?

Marshall: Yeah, can I read about ableism?

Robyn: Yes.

Marshall: I wrote that ableism is keeping the world most convenient for people whose bodies and minds operate like yours. Fueled by the fear that your own body in mind will inevitably change in ways you'd like to pretend isn’t real.

Robyn: Wow. Yeah. You know, I've mentioned this to you before, that I've had to do some reconciling around exactly what you just said, with some of the therapeutic work that I've done with kids and their parents. And really asking myself, how much of what we're doing, as helpers, is helping the most vulnerable person in the room make the hardest adjustments and accommodations so that they can be okay inside a world and expectations that weren't created with them in mind?

Marshall: Yep. And that's every major system, right? 

Robyn: Yeah. 

Marshall: It's schools, and medical care, and mental health services that you just try to squeeze everyone's towards the, quote, the norm, minimum functioning. And, of course, that there- there are needs that deserve to be addressed. And if there's something that's making life hard for someone, we should show up and care for it. And we can also be thinking about how could society change, not just how should this individual have to change? 

Robyn: Yes

Marshall: And that's the thing that we tend to do either or thinking about and there's also a lot of room in here for everyone to get to have their own expression, their own language, their own preferences, their own identities, the- the- that we all you know, who live in this community of the disabled, it's my- my preferred term for myself. Like we get to be individuals, but we also need all the other individuals in the world to think about us individually. And, us collectively.

Robyn: Yes. Okay, so let's move right into talking about what does this mean, for those of us who love, and care, and are committed to kids with really big, what I've been saying is really big, baffling behaviors. Whether it's us- us as parents or caregivers, or therapists, or helpers, or educators, right? The way that we are committing to helping these kids and how often are what we're doing is trying to help us by getting them to change.

Marshall: Yeah, it's- it's so easy, isn't it? To slip into convenience and even like good hearted? 

Robyn: Yeah. 

Marshall: Like I just don't want this to be hard for you. Yes, you're the that we start just sanding off the edges that make someone themselves so that they- they fit a little bit more easily through the door. And it's- it is a tough balance, I know we have to- we have to see the both. When- when there's a little one in front of me that is having just this overwhelm of dysregulation and massive feeling that, you know, we know what's happening in their mind is uncomfortable, and sad, and isolating. So they deserve the co-regulation. But that co-regulation doesn't have to be laced with, like a fear that, oh, if I don't help you learn to be a different version of yourself, then fill in the blank. Like it gets to be about that moment. And what you deserve in this moment without trying to shape you into some preconceived, socially acceptable version of yourself.

Robyn: Yes, when I think about how, like, it was probably inevitable, but so much of these new things, were talking about co-regulation and, has become just more language for behaviorism. Like how, okay, now, so they're saying timeouts don't work and sticker trades don't work, co-regulation works. Co-regulation gets somebody else to act the way I want them to. Like we just keep swapping. And I'm not saying I'm above this, right? That this is something I have to, you know, reckon with on a daily basis too. Which is that line of there are certain behaviors that help us work as you know, a social social species or certain behaviors don’t. And everybody has a right to their own boundaries, including their right to be safe. And sometimes we're in relationship with people who are violating those boundaries. And so we yes, like that's, we have to keep this dialogue going. But so often, it really does become like, oh, this brain based way of looking at kids, and offering co-regulation, and- and support and felt safety. This is all just the next path towards getting kids to act the way that I want them to.

Marshall: Yeah, yeah, it's a it's a gentler language. 

Robyn: It is a gentler language of manipulation. And so let's deconstruct just from the minute like, where do these ideas of the quote unquote, way I want someone to act? Where did those come from? Where did we- why do we have this shared code of how our kids should act?

Marshall: Yeah. When we, when we started evolving, to having those relational brains, so much beauty and so much complication. 

Robyn: No kidding. 

Marshall: I think a lot about the way Dr. Cozzolino writes about the evolving social brain. And that, you know, that there was, I think, this side effect of when- when humans started needing empathy to be part of their survival skills, you know, that, oh, my ability to read other people so that I can stay in connection to this group is part of how I stay safe. I have to have inclusivity, in order to survive, because in this hard world, I don't know how to grow that crop. And I don't know how to accomplish that skill. I need, you know, the rest of my village. You know, I think we started, you know, also having the framework for how to misuse and, and then cast out people that we didn't see their immediate value. 

Robyn: Yes. 

Marshall: And so, I think it's probably really old. But you know, what became hard and, you know, more recent decades, as all of that -isms, you know, the ableism is one of many egregious -isms that we could talk about there. But the we started separating people to say, Oh, now we have the concept of race, you know, and so we can put this group over here and this group over here, and now we're thinking about gender in this way, and we put this group here, and this group here and now we have the ability and disability and it just became a way to conveniently group people, and and easily set up a dynamic for some groups to have power and other groups. And that- that is such an old old story.

Robyn: This is beef I have. I don't know why I just said that's the language I would normally use. This is a beef I have with the trauma informed care movement, that I haven't found a great way to talk about eloquently. And when I've tried to, like it's not really gone well. I'm not expressing myself, clearly, I think yet, but that we are still taking in the trauma informed care movement, we still essentially at its core are okay, how do we understand the impact of trauma and accommodate that so that these people will act like people who don't have trauma?

Marshall: Yeah. Yeah, it, it's, it's upsetting to think about isn’t it?

Robyn: Yeah

Marshall: That we would attach the word care to something where we're- we're trying to say, the part of you that reacted this way was abnormal. And we're going to give you care, so that you are the less like, you were designed to be? 

Robyn: Yes. 

Marshall: Yeah, it is. It's a very strange, strange way of believing about the world. And so much of it comes from fear and shame, like all other all other things, and, you know, I, and even eradicating, like trying to deal with our own guilt, you know, so if I can make you less upset, less impacted, and I feel better about how I have contributed to a world that traumatized you in the first place? 

Robyn: Yes. How do we- how do we get to a place where the both are true? Where the impact of trauma is- And we'll just stay with that one. Because I think that's the one that you know, people listening are going to connect to the easiest is the impact of trauma. How do we- how do we get to a place where we're really recognizing the impact of trauma, and it's not something we're having pity on people for but as something, it's, well, that makes perfect sense of your nervous system in your body and your brain and your behaviors. Everything did exactly as could be expected. And not only that, but in the best way possible. And I believe that and celebrate that, while also recognizing that it has- it has come with great cost. And having a nervous system, and a brain, and a body that's been impacted by trauma is both, you know, we can trust in the brilliance of our adaptations, and know that they- that they come with cost, that they create cost, that there's, you know, consequences. And by consequences. I mean, like something bad happens, that's because of it. And- and- that that person- gosh, I'm not sure what I'm saying. Like- like- like, yes, the people who come to me for help, I want to help their nervous system feel better. And often a byproduct of that is their behaviors change, too. But what I'm most interested in, when I'm most regulated, is how do I help them feel better, while also acknowledging the response that you had to this trauma and continue to have is righteous and adaptive and makes perfect sense? And that the- I know, neither of us have like this- an answer to that. But I think showing up every day and asking that question is, in a way the answer to that.

Marshall: Absolutely. And I think the humility of showing up, realizing that there is no current answer, perfect answer. And that not becoming the excuse for not continuing to seek, you know, how to collaborate with all major sources from different communities. To say how can we get better and better? I think a lot of us get discouraged at the lack of an available answer, and then we lose the perseverance and endurance required to say I'm going to keep trying to know things that might be unknowable. But that doesn't mean that I can't know, half- half a percent more by next week. And I'm gonna- I'm gonna be at peace with that. And the other thing that came to mind is, I wonder- I wonder what would happen if we had the ability to stop thinking about eliminating symptoms, and just meeting the needs that were originally violated, or neglected, or misused? 

Robyn: Yes. 

Marshall: If we just showed needs meeting on the mind. And, and the ability to say, sometimes this is the need of the moment. And sometimes this is an enactment that's making me aware of a need that's been here from 15 years ago.

Robyn: Right

Marshall: And I'm going to treat both with equal care and gentleness, that the reality is, sometimes we start over simplifying that in the mental health world about, well, we can't do that at every minute of every day. Of course not. But keep track of it. It doesn't mean that you can't log, you know, as a mom, as a dad, as a therapist. That's not a need I can fully get to right now. But I will not forget that that need is there. And I wrote this thing to myself that I think I ended up sharing that it was about myself, but I think people heard it as others. But I said something like ‘I wonder how we might change if we learn to love the parts of people that kept them alive’. 

Robyn: Yeah. 

Marshall: Something like that. And I think that that was part of my self work. And then imagining a lot of parents run low on their ability to do that for their kids with different struggles and meet disabilities. Because they've not internalized that they deserve the same sort of gentle, caring, understanding, and how painful it is to look into the mirror that is our children, be the biological step, adopted, to see parts of our own wound itself back at us. And understand the pain that that child was going to have walking out into the world because we walked out into the world with that, to not want to just eliminate it. It's harder than it sounds.

Robyn: Yeah, I mean, that as I'm like formulating what my next question was going to- was going to be it was going to be something like that, which is the reality that, you know. I know, you know, these parents of kids the intensity of these behaviors as well as I do. We have similar clinical backgrounds. So for everyone listening, I want to reassure you, Marshall knows you in the same way that I do. And in a way, it would be easy to hear some of these things as me, the parent, needs to figure out how to just be abused. Because my, you know, these behaviors are coming from, you know, this intense, the terror, the isolation, the experiences that are underneath those behaviors. If I recognize and I honor that, and I lean into that, that means I now have lost my personhood, like my right to have a boundary about how to be- be in this relationship in a way that's safe for me too. Because you know, as well as I do, like a lot of my listeners really are experiencing relationships with their kids that we could easily call unsafe. Yeah. So you already answered the question. And that the- even though this isn't a technique, or like, we'll just do this, and this solves everything. But the bravery to get curious about what parts of ourselves haven't been welcomed. 

Marshall: Yeah. 

Robyn: I was in a consult with it with a with what am I being with students recently, and they talked about in the in the, we were all together as a big cohort about some of the things that the parent they were working with, what some of the fears they were articulating. That essentially we could summarize as ‘if I don't punish, they'll never learn that this isn't okay’. And I said, Well, I think what I'm hearing there is a fear that, left to their own devices, this child is just bad. And actually, what I would imagine is behind that is. When I was small, what I learned about myself is that if I wasn't punished, my badness would just take over everything. 

Marshall: Yeah. 

Robyn: And I remember that, you know, all of us kind of just taking this collective breath of, you know, and then how do we as professionals show up differently with, with the parents we're working with, when them when that's what we see? You know, when they're connecting with us over their struggles in parenting?

Marshall: Yeah, cuz, you know, when we go back to talking about needs, at the point in which maybe some of these more vulnerable, and most dysregulated patterns began, there was always a need for boundaried compassion at that moment. Like, they did not need a caregiver who showed up, who was just full of emotive pseudo compassion, with no structure to it, and no expectation to it. And they didn't need the rigidity of boundaries without an empathic connection. Like, it's always the both. What's why it gets to always have to be the both, when we're then later trying to pattern in the multiple times of trying to meet that original need. So that it would take in the way that it could have taken once, you know, if it had been there at the first point of contact. And so it is- it cost us a lot to have to think about how to hold on more than one thing at a time. And that that's part I think, of why I like working with parents in this way is they deserve to have someone to show up and say, yeah, it feels at times, like we're having to hold on to things that do not get along in our brains in order to show up, and I can hold that for you, while you kind of move from a coliseum mindset, you know, to more of a sacred meeting space, internally, where these things are welcomed into dialogue instead of in the competition. 

Robyn: Yes. So then as parents, where's the line? Like? How do we know? Like, right now my child needs is for me to show up in this very compassionate boundary way. Versus no, my child's having a righteous reaction to being inside a system that has expectations for them that are absurd. They're not capable of, and we as the system, just keep insisting, like, sorry, that's the system, figure it out. And so they're having like this very, again, like very righteous response to, ‘but I can't. And you keep asking me to, but I simply just can't’. Like, where is that line? Where do we find it? And then, and then showing up? And I know, again, I'm asking you questions that you can't answer, but it's more just like, how do we stay curious about this? And then and then how do we show up being our kids fierce advocate of, essentially, like, my kid is being extremely clear with you that they cannot meet the expectations of this requirement, the situation, regardless of what it is. So how do we, as the adults, and again, as the people with the most power. Which that's the thing that, like, if you've pause and think about it for a second, that's the most baffling part of all of this. We are continually asking the most vulnerable person with the least amount of power to make the change. What if we got together as the big people with the power, and theoretically slightly more regulation, to say what do we need to change? And I feel like even if the answer to that question is impossible, because sometimes it is, like it's so nice, it's legit impossible. It's still really great information. And it still totally changes how I'm seeing this kid, right?

Marshall: Yeah. You are sending fireworks off in my brain. So I literally grabbed a pen to write 

Robyn: I noticed that you grabbed a pen! 

Marshall: So you got me excited. I mean, I- I know it's just so much harder to implement than it is to [unintelligible]. 

Robyn: And everyone listening just to hear that again. We know. This is so much harder. That's not even a word that makes sense. Exactly. But like implementing this and talking about it are wildly different like me and you're sitting in our cozy offices right now. It's quiet. Nobody's lighting things on fire, or spitting at us, or peeing in the vent. [laughter] Not happening right now.

Marshall: Yep. Yeah, there's, there's no poop paint on the walls. There's nothing. There's nothing here. But the, you know, the thing- and also to declare, even though my kids are young adults now, man, those not these oh, man. There has not been a day of easy parenting ever. And, you know, even when it felt like things might be going somewhat smoothly with one, like that was almost always an indication that something was going on with the other. And it's hard not to be constantly vigilant that you think-

Robyn: Also, do you think you have a different standard of slightly easy? [laughter] When you say things are going slightly easy with one like, your definition of slightly easy, which is not the definition of most of my listeners. maybe the definition of the definition of your average parent.

Marshall: I think I think your listeners are my people. I've lived in the houses. I know that like we have a different way of grading things. 

Robyn: Yeah. 

Marshall: You know, of, you know, today, I got both children to eat something. Today, nobody got bitten. Call it a win as I close my eyes and exhaustion. You know that? I think the first thing is responding to, like, how- how do we approach this? And especially holding in mind all this topic about ableism. And disability is, you know, step one always is us being more reflective as adults. For me, like how can I build in moments of practice where I just learned to listen to my motivations. And I learned to listen to all of the internalized voices that are informing my own reactions and opinions. Even when I feel like I did something well, because a lot of times, we tend to only be reflective about the things that felt like obvious breakdowns. Instead of like, maybe also thinking, okay, I did this thing. They responded with less of a behavior, wonderful. Those are often the moments where we might be most at risk of having acted out some accidental ableism, that might have solved a moment but created a problem tomorrow. And so just learning to stay reflective and curious about did I do this because this is the need my child deserve to have met? And then what happened next? Was their spirit acting out of feeling seen and held and saved? Or did I influence an agenda that comes from me trying to shape them into a more desirable, easier fit into the existing world? And if so, that might create an issue at the  next developmental moment. So we have to start with some way of being reflective which it's so hard to have space for it. [indistinguishable] 

Robyn: And to be so compassionate with ourselves, regardless of what the answer was that I parent out of ways that are making my life more convenient in this moment, as opposed to what does my child truly need to be his true self and to be completely seen in this moment? I hope I don't do that. For the majority of the time, but without question, you know, as my own nervous system fluctuates as my own safety and you know, as like, there's so many reasons that I'm not excusing it, but that just becomes part of being human, right? Like sometimes we just show up in a relationship in those ways. And there are ways to notice that without shaming ourselves for it.

Marshall: Oh, yeah. Yeah, we do our best repair when preceded by self compassion.

Robyn: Yes, absolutely. Yeah.

Marshall: God knows there's so many times that I had to apologize to my children, after even in a moment of like it not being a blow up, but me having some moment of realizing that I left them with a message about themselves that I do not want them carrying beyond the walls of this house. 

Robyn: Yes. 

Marshall: And so like, a lot of times if they became teenagers, because I would try to talk to them about that they'd be like, kind of you're so ridiculous, you know, or the word very quickly became, you're so extra.

Robyn: [laughter] You’re so extra.

Marshall: I missed it way more often. And I still don't have time. But if- if we can, if we can find a way that hold some reflective practice, then we're a little more at peace with realizing that then dealing with the impact of maybe certain disabilities, even if it's a temporary disability, like ASD (autism spectrum disorder), where it is something until it isn't. And the markers might always live there, but they've gotten new care and new meaning inserted into them. Whenever we can do that reflective work, we're at peace with the fact that in this moment, all I can focus on is safety. 

Robyn: Yes 

Marshall: No one's getting scratched, no one's getting hurt, no one's running out the house. And then in the next moment, when we've gotten safety down, I'm going to try and titrate in some comfort. And then after that, I'll try to move into some encouragement of identity worker, but that- that sometimes happened over the course of a few hours, but most of the time, it's over a few months. And we can be patient and understanding that there is an inevitable hierarchy of the neediness that we have to patiently stick with. And I think that we're a little more comfortable with doing that through a spirit of inclusivity when we're aware of our own connection to that long term process.

Robyn: Yes. And that it's long term, you know, and I think that feels so hard, but it's just so true. And when we can just grieve that, I think. Grieve- I mean, I think both right? Like we grieve it. And also, you know, the fact that it does take so long I think is honoring of the process.

Marshall: Yeah, I'm gonna try and say this in a way that you may have to clean up. Are you ready?

Robyn: Okay. Yes.

Marshall: You know, having been around the world of adoption for a long time, then-

Robyn: Yes 

Marshall: -personally, as well as professionally. I've so often seen in blogs, by adoptive parents or in workshops, and these beautiful moments of the parents speaking with fierceness about the advocacy of needing a world to better understand their children, but then they- they kind of collapse into their own grief, in a way that- that shows me that maybe the parent themselves is not fully aware of some of their own, maybe, emerging disability. And they're not treating those parts of themselves that are wounded or carrying struggle in the way that they're trying to advocate that their children deserve from the world. And it just makes me so sad. All parents are as deserving as- as kids are, and then watch people try to be advocates without yet having overcome the impact of- of how the world has treated them. And it's, it's the thing that I wish I had some ability to just touch quickly and everyone have a lot of times, you know, the adoptive parents I work with, not all. They have their own medical issues, you know, that might have accumulated over stress, but also might have even been a contributing factor into some of the decisions about how they grew families. Or they have some of their own range of neurodiverse presentations. They might have some of their own PTSD because it comes from unprocessed grief or other issues and- and then there- they haven't fully received the benefit of someone advocating for them. Or for someone saying you matter and your experience of how you've been marginalized and unseen deserves to be held so that when you do the advocacy work for your child, you're not accidentally shaming yourself while you're trying to do that. It's where I want to be more involved and what I hope people could start making space for.

Robyn: Yes, I- I- that space of watching, parents or- or being invited into watching this space of the fierceness that these parents show up with for their kids. And those are the parents that I know, right? They’re listening to a podcast that has now gone on for over an hour. They've really, like intensely committed to you, how do I show up in a way- in the way that my kids needs? And finding that moment where they realize they deserve to be shown up for in that way, too? 

Marshall: Yep. 

Robyn: And then what comes after that is so you know, to- to think that that's my job- like, that's my job to be invited into that space with people. It's pretty amazing.

Marshall: And it's, I think that's where there's also an another term that- that might be relevant. For those parents of internalized ableism. I- maybe I haven't had the chance to see how the ableism of how I was raised or the what the systems around me taught me started informing how my own internal dialogues happened. And so then I'm trying to develop this advocate part for my child, but my own inner community hasn't been gifted with the space to practice that advocacy with himself. That's a big ask. It's- it's- really asking a lot of a parent to be able to do that. And I think that's where we go into that anger issue is, that's where I become vulnerable. Like, I didn't do a lot of my work around this until my kids were older. And so whenever I would need to show up at the school and have some controlled and righteous anger that [indistinguishable] paid for. First of all, I understand that you're telling me that accommodations don't traditionally get to work with- the way that I'm asking. However, I'm rather insistent and to be mad at them, and then to show back up with my child later that day. And to not have that anger at school, go with me as I've been talking to them about school and doing homework. If my inner community hasn't received all it needed, it is almost impossible to make those transitions over time without it having an accumulated- accumulating trauma impact on the parent themselves.

Robyn: Yes. All right. I want to say one more thing, and then we should wrap up, because we've been going for a long time. But I haven't been able to stop thinking about something you said. And so I just want to note it. Is you said, you know, I don't remember the exact words that you used. But basically the difference between something perhaps like PTSD, which, you know, we go into with this belief that there's this treatment plan and eventually we'll quote unquote, cure the PTSD. Versus a another, kind of, disability where that- that isn't ever going to happen. It's- we're not going to change it. And in my world, I might be thinking about something like FASD, right? Like, there's a place of recognizing like- like, we're not changing this. What if- what if we stopped looking at things like PTSD as something that we had to change? Like, what if- what if the entire model shifted and instead of us going into the treatment of PTSD so that we end the PTSD our approach- that wasn't- the endgame wasn't how do we get rid of it? 

Marshall: Yeah 

Robyn: Like what- what would be different? And it feels like everything-

Marshall: Yeah. 

Robyn: -would be different, and it would still be possible that the PTSD symptoms would alleviate. 

Marshall: Yeah. 

Robyn: Bringing relief to that person, because of course, that- that's the goal, right is how, how do people's bodies feel better? 

Marshall: Yeah. 

Robyn: But what if that wasn't our objective? To get rid of it, or to end it, or cure it, or whatever the fancy language we use?

Marshall: Yeah, I think, I think it's so complicated to hold. In mental health versus physical health, there's crossover and there's also differences. You know, as an example, one of the microaggressions that I often receive from really well intentioned people who come to talk to me about my muscular dystrophy, is they want to say, hey, there's this herb you might try. There's this doctor that heals things that no one else can. And- and while they're- they're really being sweet in their motivation, like they want to alleviate suffering. There's also a part of them that's not super attuned to me in that moment, because they would realize that they're increasing my emotional suffering, by most likely, trying to make themselves feel better about solving something that's not solvable. And I believe hope- I mean, maybe the world will advance. Maybe, you know, muscular dystrophy will one day have some radical treatment, and it's worth investigating. But a lot of my journey has been having to make peace with the realities of my body. Instead of- and at the same time, doing everything I can to slow progression. But it's a different mindset than trying to eliminate something. Versus, you know, I look at someone who has a disability that maybe comes from a car accident, and there's the possibility that they go through the same physical therapy I do. And they end up back to a prior state of functioning that I never get to have. We- we have to be at peace with all of these dynamics without insisting agendas, and I think it gets more slippery, when it becomes emotional health. You know, I think you're exactly right. That people deserve to know that most of the time trauma is co-occurring with another emotional struggle. 

Robyn: Yes. 

Marshall: And that when you did get the needs met, that was there with your trauma, you could experience more access to yourself, but that's not because you should have to change to be more susceptible. And it's such a complicated message, but we just got to keep trying.

Robyn: Yeah, exactly. Exactly. That is such a complicated message. And we just have to keep trying. I love how you said like, more access to yourself without that being driven by, you know, changing yourself to fit in with a, you know, a world with certain expectations. And what if the outcome for both looks pretty similar? Right? Recognizing- reconciling that is yes, yes. But I think you know, probably what's so powerful about our relationship is we're both so- and why it works, is that we are both just so committed to- and and do an okay job at I think, hanging out and these places where there is no there is no answer. We just keep doing it.

Marshall: Yeah. Yeah, keep preaching. 

Robyn: Yeah. Well, friend, thank you so much for not just giving me so much of your time today, my listeners so much of your time, but just for- for everything. For you know, I know we tell each other this all the time. The way that our relationship has impacted me is profound, and I'm so grateful. So thank you for that.

Marshall: Same to you, friend, you've left a mark that I am forever grateful.

Robyn: Oh, y'all, that was just so good. When making the social media posts for this episode, I couldn't pick a quote, like I couldn't pick the best quote. I usually have a quote that I post and then a summary of the episode that I post. So instead of doing that, I just picked 10 different quotes, made 10 different quote images. And that still isn't all the good quotes. So, if you want to share any of those, you can head over to my Facebook or my Instagram page, Facebook, I'm Robyn Gobbel MSW, and on Instagram, I'm @Robyn.Gobbel. Y'all hard things are a little bit less hard when we do them with other people. Hard things like talking about ableism and how we've unintentionally participated. Hard things like parenting kids with vulnerable nervous systems. So thank you for joining me on this hard journey. Thank you for allowing me to join you on this hard journey. And thank you for joining with each other. All of y'all that are listening, you all are connected in some way. The 1000s and 1000s of you all over the globe. You're all connected. We're all doing this together. Share this podcast so that more people can get support with the really hard stuff. And just know that I think you're the best. I adore you. I'll see you next week.