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Autism Parent Reset: Reorienting, Healing, and Finding Joy with Writer, Kit Perez · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hey everyone, welcome back to another episode of the Inshones podcast. You know, I love me some substack. It has been my favorite place to create longer form content about my wild and crazy life with two children with profound non speaking autism. And specifically how having children like that has reoriented my sense of self, my sense of the world, sense of my environment. And in being someone that writes about this, it's no surprise that the algorithm starts pushing you towards other people that maybe use similar keywords. And I absolutely love welcoming guest today, Kit Perez. She is an author as well on substack and is 100% grounded in the idea that orientation drives behavior and drives the motion of humans in general. And we're here to have a talk today about that because we found ourselves making, having replies on very similar, similar other substackers and knowing that there was a lot of overlap here. So Kit, welcome today.
• 1:07
  Speaker B: Thank you, thank you for having me.
• 1:09
  Speaker A: Tell everyone a little bit about your work and what you write about and then we'll get into really what made us decide to do this episode, which is talking about this hierarchy of autism and the autism spectrum.
• 1:23
  Speaker B: You know, it's funny, you wouldn't think that somebody is I right about orientation and resistance. And people think of resistance as, oh, we're fighting the government. Well, no, resistance is literally just orientation under pressure. So it's the discipline of staying aligned with reality. When you're in a system that you don't want to be part of and therefore you have to make a new system or you're trying to orient to the reality that is, I say this all the time on my substack. You have to understand the battle space as it is, not as you wish it to be. And that's true whether we're talking about, you know, organizational dynamics or autism advocacy, like what you're in. And so initially I was like, what could I possibly have to say about autism? Like, this is.
• 2:05
  Speaker A: I knew, but.
• 2:06
  Speaker B: Right. But it's, it really is the same. You're using the same principles. And it all comes back to the same question. How do you maintain your integrity when the incentives and the system reward performance over actual function?
• 2:21
  Speaker A: Yeah, I mean, you just said so many things that I could, I wish I could just press on, repeat and just listen to all day. Because the majority of mothers and caregivers, especially when we're first going through the process of realizing that you have a child that has a severe autism diagnoses is exactly what that first phrase that you said. There's the reality and you're seeing this.
• 2:45
  Speaker B: You're.
• 2:46
  Speaker A: The reality is obviously something that your. Your eyes and your ears are watching. And then there's this conditioned expectation to. What you realize is. Is you're performing as a mother. Right. And then that mismatch is so, to use the word profound, that it does create such friction for your mind and body to regulate that it's taken. And I. And I'm. I'm happy to say that it. That it was fairly quick for me. I realized very quickly that I had to reorient this life. There was no alternative to that, because if I didn't, I noticed so many of those very, very tightly wound conditioned expectations that were going to really become the core of my being. And I did not want that to happen.
• 3:32
  Speaker B: It sounds like not only did you have to learn how to care for your children properly and all of that, but you also had to do work. And that kind of goes back to what we were talking about before. You have to do the work to reorient so that you know the system.
• 3:46
  Speaker A: You're in the system of family. Right. And all these things. I. The work is actually, I believe for the parent that is. Will be similar to me that got diagnosed. Child, now or whenever is realizing that you thought that you created the system. You thought so deeply that the system was X and you were going to perform. Y and Z happened. And all of a sudden, you know, he and you and V are in there and you're thinking, don't want to account for those variables. And the problem with reality is that that doesn't go away just because you don't want it there. And the energy. I know that you, you know, talk about this and you know, energy maneuver, maneuverability theory. You know, Boyd talks about a lot from UDA and his. In his theories, you end up using so much energy to fight reality in an environment that you don't want to be in.
• 4:46
  Speaker B: Yeah. Because you're essentially trying to force the system back to what you believe it will be, which doesn't work because eventually you. You end up with one of two mindsets. Either you understand that the reality is not what you wish it to be, and you spend all of your time and energy trying to make it that way. Or you under. You don't understand that the reality has shifted. And so you keep doing what you've been doing and getting frustrated because it doesn't work or whatever. So, you know, and implying that maybe to your situation if you don't reorient and you think, okay, we just need to Find the right therapist or we just need to find the right thing and then I can the reality so that my kids will go on to fulfill my expectations of what my family's supposed to look like and what my kids are supposed to accomplish. And then that's where you get into the deeper work. Why do I need them to accomplish those things? Well, because it makes me feel validated. It makes me feel like I am good mom.
• 5:47
  Speaker A: The thing that was one of the most simple, one of the most simple actions like it. It was a default action of mine. But when I once I realized that, I realized how powerful it was for me and it really led me to the term inch zones over milestones is because the only thing that I was able to account for was a pattern that I saw within Millie and Mac. Like there was nothing that I could do to force a pattern to be differently. I just let their own pattern emerge. I think the emergence of that and the comfort that is finally found when you have children who are not typical yet they still exhibit their own patterns of growth can become a really peaceful place to live by completely destroying the original system and mentality for motherhood and simply creating by the patterns that are actually being shown to you. And people don't want to. People are. So we were saying before we jumped on, there's a lot of anger around that because they just want to be told, but just fix it. Just fix it and to destroy. And then you can build something new. And that, that, that new might actually be a much better orientation, greater in a lot of ways. But until you shatter that and not think that you're going to fix it, there's a lot of. There's a lot of friction and energy lost.
• 7:17
  Speaker B: I think too that there's a danger in assuming it needs to be fixed because if you, if you need to fix something, it's because it is broken. And if it is broken, then you're going to view it as lesser or less valuable. And when you're talking about human beings, that's a really dangerous slippery slope because you're attaching value to. You know, if you look at your kids, for instance, as well, they're broken and I need to fix them. You're going to start seeing them as less instead of, okay, they were created this way and this is the system. And I'm going to learn how to peacefully and even joyfully operate within it so that I can squeeze every bit of awesomeness out of this. And it's kind of funny, when I started reading your work and started Seeing, you know, the life you live, however you want to put that. I'm thinking, how does she have time to have a podcast or write or do all these things? Because other people get this idea that, okay, well, you're just walking around all the time, you know, being 24 caretaker, how do you possibly. And that's not your lived experience. Right. Because you've made peace with the system and you've made systems within systems. That's right.
• 8:34
  Speaker A: And so, yeah, the power that I hope to always model for other parents in this situation is it is so easy to lose your sense of self becoming a parent as is.
• 8:48
  Speaker B: Right.
• 8:49
  Speaker A: I mean there, there are more books and podcasts out there and television shows and everything under the sun. That's like, you know, that first child is going to really change your life. It does. It radically changes you. And I think that we need to start talking about if that's a desirable thing that women and men choose in terms of having children and building a family, if the knowledge that you're going to change that motherhood and parenthood is going to change you. Why is there a negative or less than, as you say, perspective on a child who doesn't fit your expectations? Because you, the assumption was children are going to radically change your life. And I think the simplest way to acceptance is that that was the first thing that was mentioned to me when I became pregnant with my, with my first, who's a typically developing, almost 13 year old girl, is that your life will never be the same. And I think the simplicity of the message for the women and caregivers in my situation is it is never going to be the same and it's going to be 30,000 times as hard to do anything typical in nature. And you're going to say and redirect and truly keep your children with profound disability alive and safe with your guidance, hands on more than you ever anticipated at all. And your life will never be the same. It's such a. Motherhood has the ability to push all of us into, into an evolved state. Right. The, the care that my children necessitate has also become a reason that I've grown in so many ways too. You know, they're going to get off the bus here at like, well, I'm on the East coast, so 3:45 in like 20 minutes. It's game on. There's no, there is 0.0 chance that they can successfully get off of the van into the home period. When you witness that, when neighbors witness that, when people are driving by and see that I Think there's a mismatch and a curiosity that's naturally stems from human nature. We look for things that are different. What you don't see is how that changed the mother or parent. How that hyper presence that's needed beyond the age in which you're conditioned to think or primarily wired to do so, also creates skills that are so beneficial to me at 42 years old that I know in a million years, if I had three typical kids, I never would have.
• 11:31
  Speaker B: No. And I think too, I want to go back to what you were saying about, you know, having a child will change your life. It's a function of a person's emotional health and baseline orientation as to whether that statement is a joyous, excitable, this is going to change my life or this is going to change my life. And how you approach that makes all the difference. Like you're sitting here glowing, talking about, man, this is my life. Is. It is.
• 12:02
  Speaker A: Yeah.
• 12:03
  Speaker B: And yet I know of women who view it entirely different on the other end of the scale, where they're like, this is my life. You know, and that is an orientation function too.
• 12:14
  Speaker A: Do you think that the ability to model it for yourself and do the work, as we were saying before we pressed record, or having enough pause or bandwidth to realize that that is a choice, that your mental orientation and what you can perceive as resilience and struggle is actually a choice? I think a lot of people in the audience, maybe I serve, tend to, just like you said, be really bogged down by the reality. And they place so much emotional weight on reality that they are unable to just work through the reality a little, with a little less heaviness and a little less weightedness to it? Do you feel like that's something that. That can. That is a. That can be addressed within the population of mothers in general?
• 13:05
  Speaker B: Like you said, I think that. And I have to. I want to be very intentional about how I say this, but there's really no way to say it that isn't controversial. There is. I'm a huge fan of people doing the work, whatever the work looks like for them to deal with past stuff that, like you say, bogs them down and it causes. It's like a film over the lens and you view everything through it. So, yes, you have to be a victim before you can be a survivor. That's true. But if you don't ever want to get to survivor status because it's too easy to sit in the victim part of it, well, guess what? That lens is going to stay over Everything you see, everything you do, everything. And I see a lot of people in my office when I deal with clients working through trauma, that they're 50 years old, they're 60 years old, they're 40 years old and they're still 20 or 12 or whatever. And at some point either you do it or you don't. And when I have someone say, well, I'm not really interested in taking on the work right now. Okay, that is absolutely your choice. I value that choice. I would die for that choice. Also, you'd know that nothing's going to change, right?
• 14:19
  Speaker A: There's trade offs.
• 14:20
  Speaker B: There is a choice there. And I think, you know, you've made the choice that, okay, I'm going to understand the battle space, I'm going to make systems to operate within it and I'm going to find the joy. Joy is not something that just magically happens.
• 14:33
  Speaker A: Well, I think too that it also there's this exponentially magnifying effect of things that we perceive one way to be accommodation or a support need that end up transforming other parts or other systems in a way that you didn't think were going to be affected. Which again, I, I about, I think I talk to moms a lot about. There's a stressor on the hyperactivity or hyp, the hypervigilance need of the activities of, of my, of my two kids. There's a need to keep them safe first and foremost, especially when we leave the house. My son has to wear a weighted vest and a harness. There's no alternative because the second that he's not, which has happened more times than I care to admit, he is in the pond. He cannot, everything in his body is going to go into the pond on our walk and ask him how many times I've gone into the pond. Ask me, I'll share a picture offline of my sweet Millie covered in sludge and her mom. But to that end is that that hypervigilance and the, in the, the system that I got to create for an environment that I was not suited for typical children and motherhood in a typical way has allowed skills to become muscle memory. So that when I'm not around my kids with that need, I'm more present, I'm more actionable about healthy choices. I lead with such, such a greater intent for my life. And I'm not sure had I not had them that that would be the case.
• 16:17
  Speaker B: I think I, I hear that much.
• 16:19
  Speaker A: Different way, much more la dee da.
• 16:21
  Speaker B: Right, right. You know, hooked to the phone or what have you and I know. I've. I've talked about, on my substack, about how we get. I've had people tell me I have all of these skills, and they come from my trauma. And I'm afraid if I heal the trauma, I won't have the skills. And in reality, all you're doing if you heal is you're unhooking the compulsion wagon. And like you say, instead of these being compulsions that you engage in as a result of your situation or your orientation, they're disciplines that you choose to engage in their intentionality. I have this skill. It's not tied to a trauma response. It's not tied to a sadness or a depression. It's tied to. I choose to engage in this because it will serve me in the system that I am in. Yes, that's what healing will do.
• 17:12
  Speaker A: And, you know, I have had therapists share with me over the years that when it comes to developmentally appropriate things, for even my typical older. Older daughter, being given a choice is something really impactful. As your child, a typical developing child, becomes more independent. So around 10, 11 years old, they don't want to do something. And you say you have two choices. You can do this or you can do this. You know, and you. And you just present it, and it allows them to have agency. And I think that that is deeply woven into what I write about all the time and what you're sharing about orientation and this choice and trauma response or moving and healing and becoming a survivor. It doesn't mean that you're choosing to hold onto your trauma. I'm not choosing to hold onto a life that does not exist. For me, the reality is the life with three typical developing children, that. That was not in the bingo card. Even though I would have sworn it was like. I would have sworn the skills, like you said, that were garnered from what I went through have become. I never attached those to anger, sadness, frustration, defeat, defense. What's the point, right? But that takes a lot of conscious choice, especially when all of society is telling you that your experience is gonna be rough.
• 18:31
  Speaker B: Man. That's right. You're like, yeah, it's a lot thick, too. It's almost seductive because there's. You don't have this. I. I've very much noticed this. You don't have this. But there are a lot of people that deal with, whether it be severely disabled kids or a disability of their own. It's. There's a heroism that's attached to it, and there's a validation where when people Say things like, man, I don't know how you do it. You so strong. That feels good to people who haven't done the work that gives them the thing that they crave.
• 19:07
  Speaker A: Getting something of a reward for not healing, maybe, or not.
• 19:13
  Speaker B: Yeah, almost. Yeah, almost.
• 19:15
  Speaker A: Like there's some, there's some validative quality. And I'll tell you if. And that happens to me sometimes, you know, maybe a family member I haven't seen in a while or I don't know. Gosh, I don't know how you do it, Sarah. You do it. And I try not to attach even a reaction to that because I want to change the narrative on what their. Because it's also a, you know, dialogue is interesting. Someone offering that up to me is also positioning and posturing themselves above, like, like, oh, you're here, I got this. Like you got. Right.
• 19:53
  Speaker B: And attaching, to some extent, they're attaching a bit of guilt. I don't have to deal with that. And I kind of feel guilty. So I'm going to throw her a bone so she feels better about herself and then I can feel good that I made her feel good. And everybody wins. But it's not a win win. And in reality, your situation is not who you are, it's what you do. And your value as a human would not have changed whether you had three neurotypical kids or if all three of your kids were profoundly autistic. It doesn't matter. And so being able to be emotionally healthy do the work and it helps you separate. I can operate within this system because my value isn't tied to it. I'm going to be who I am regardless. Right.
• 20:35
  Speaker A: Right. And, and I think I always try. And again, it's being full, full disclosure. It's not easy every morning to sometimes have the aha moment of like, oh, here we go again. Right. And there's going to be children that need.
• 20:52
  Speaker B: Appreciate that candor that you're not like, oh, it's so easy.
• 20:55
  Speaker A: No, I mean, I would, I mean I would love to watch the sunrise out of my window every morning and just have my coffee like that, you know, and, and, and know that they're all going to get up and brush their teeth and change. And I mean it just that, that, that reality doesn't exist. But what I was going to say was that when you use the word humanity, there's. I, like we were saying before, I. There's identity and there's, there's the hum, the human, the human element. And I, I'm constantly reminding Myself. And this is a practice, too. Millie and Mac, at the end of the day, are deeply human, right? They are alive, they are healthy, they are joyful, they're happy. Sometimes I have no idea why my son is cackling to the point of no return. I mean, he will belly laugh. And I think we have watched that episode of Daniel Tiger eating a picnic at the park more times than I can count. I mean, and I. I can say the first two words of a few songs for Millie. Not even the. She doesn't even know the tune, hasn't even hit yet. And she is. She is so happy. She's like, she gets it. Mom gets it. And I think the human behind those children is found. I get to see that. And I would not have been able to understand the humanity behind every human that I meet had it not been for mothering children that need that in a capacity that's way bigger than I ever anticipated having to give.
• 22:19
  Speaker B: Right?
• 22:20
  Speaker A: And I wonder. I wonder how. How we can teach that orientation and teach that lens that actually is that choice that you speak of. How do we do that?
• 22:33
  Speaker B: I think you. You have to. When you're talking about, for instance, I think the number one thing that you can do. I'm trying to tell you eight things at once, and they're all coming out at once. The number one thing that any human can do, period, full stop, is to heal their stuff. And the reason for that is because you stop seeing other people as what can they give me? But you also stop seeing them as, what can I do for them so that they don't reject me, so that they love me. There's always a. So that involved. And when we heal, that, we can start setting aside. Because in. In say, for instance, if I hadn't done my work, this entire conversation would have an entire layer to it about, okay, how do I make her respect me? How do I make her think that I know what I'm talking about instead of, and that's where all my emotional energy would be going. If you hadn't done the work, you would be like, well, I need her to know that I'm a hero. I need her to know that I'm a martyr, whatever the case may be. Whereas because we've both done our work, we could just have a conversation about what really matters, and there doesn't have to be that extra weight. And that's true. Regardless of whether you're resisting a government or an HOA or trying to raise your kids.
• 23:46
  Speaker A: Do you think that it comes down to when people show you who they are. Believe them.
• 23:52
  Speaker B: I wholeheartedly believe that. I think people will show you who they are. And if you know what you're looking for, you can see it in about 25 seconds so damn fast.
• 24:01
  Speaker A: And I don't know if that's because of my own ADHD and neurodiversity and I have got spidey senses that I think are generational and just have a read on people, or is that something that has been a byproduct of digging really deep and getting very brutally honest about myself and my past and my choices and the family I grew up in and all these things?
• 24:25
  Speaker B: I think it's all of that. And I think it's all of that.
• 24:28
  Speaker A: What do you think creates the fear of doing the work?
• 24:32
  Speaker B: We don't like seeing the warts. And if we have warts, which we all do, even after we've done the work. Right. I have all sorts of problems and issues and bad habits and whatnot, as do you. Right. But in order, like you say, in order to be brutally honest with yourself, you have to be willing to see and be open to the fact that sometimes we do get in our own way. Sometimes we milk it, sometimes we create it. Sometimes. You know, for instance, if I'm going to look back at my past and say, oh, I have this failed relationship or that failed relationship and it's, you know, I always found the right guys, well, why is that? What makes those people attractive to me? What is happening inside me that makes me look for them? And that is not to say that it's our fault that trauma happens. Like, please don't take that. But we don't exist in a vacuum.
• 25:29
  Speaker A: And I think agency, like, it's so easy to discuss hypotheticals of a choice or what children to have or expectations, but the truth always comes back to, I'm also a, a human and a female with some things that if you don't sit in the uncomfortableness of your own experiences that have created this version of you, you can get your, your own, your own. Your independent choice then does become less than because you haven't realized that there are unconscious layers to pull back. And please, please. Like, as you said too, I have a lot of things I'm constantly working on. I mean, my oldest literally just said something. I was like, I gotta really work on that. She's right. But sometimes I think children, young adults, because they haven't been literally alive as much, sometimes their, their reflections are the best. Sometimes they're, they, they, they become the teachers for Your own things that you need to heal and to look at. And I think that parents that do that and I even look at that with my. With the younger two with. With their needs. Sometimes it's the simplest of answers, right? And why have we made this so complicated? Millie loves letters and numbers. That girl will watch football all day long. And. And Mark and I realized, I think it's the dancing letters and numbers on the screen. There's something about the numbers and letters, and she just loves it. She loves going to football. She loves watching it. Isn't that okay? Like, the simplest of things is. That's giving her. That's giving her an input that is so. That feels so good to her system. Now we can watch football with her any day. We can bond on that. I always joke that she's going to be like the future sign stealer, like the Michigan dealer. Millie's going to be that for one. For like, she's going to be like back office at some college football. And they're like, how did you guys figure that out? Be like, Millie Markle, this autistic little. This girl, she just figures out the patterns.
• 27:30
  Speaker B: That's awesome.
• 27:31
  Speaker A: But that, but. But the. Sometimes it's just saying that was the simplest answer. And it feels good. It feels right. It doesn't. It's not layered in anything more than what you witness. You see peace, you see joy, and you see content. That is something that any child, I think, can give to you. Now, ones that speak, they're going to tell you, they're going to say it, and it might jar against you, but that. But that's on you to react and to still take ownership of that. And I think that that's the beautiful part which I try to always sit in is what is this teaching me? How can I reorient to make my system better, more efficient, less emotionally reactive, and then hopefully remind others in similar situations that they do have a choice, too.
• 28:15
  Speaker B: Yeah. I talk a lot about, you know, the five questions that I use to reorient, and I sometimes have to answer them several times a day. And it's what is true today? You know, it may not be the same every day. You know, what. What is the most critical thing today? Where am I drifting? You know, what. What is mine to own today? And what can I release? And when you're talking about your daughter watching football, if you were trying to force a system, you'd be like, okay, well, because we have to fix her. We have to have her doing, you know, stimulating things and all this other stuff, but because you're okay with the system, you'. You're like, you know what? No, Today we're gonna do joy. Football's on. Have some joy.
• 28:58
  Speaker A: Yeah. And her brother wants nothing to do with it. And he wants to.
• 29:01
  Speaker B: Which is also okay, right? Year old boy.
• 29:03
  Speaker A: And I as. As. I probably sound like a broken record on this podcast. My sister brought this term up to me because she had a boy before I had my son. And she said, sarah, this is before autism even entered the equation for my son. She's like, they have to be run like sled dogs. They're sled dogs. Boys are sled dogs. She's like, little boys have an energy capacity that is much different than little girls, and they need to be run like sled dogs. And I'll tell you what, man, that is like the. It's like the gospel by my sister.
• 29:34
  Speaker B: Yeah, that's.
• 29:35
  Speaker A: His male energy is just so different, and autism or not, he needs to be run. He needs to get that energy out.
• 29:43
  Speaker B: I wish someone would have told me that when I was raising my son. It probably would have made things a lot easier.
• 29:48
  Speaker A: Literally picture him like a little puppy sled dog. Like, all right, strap in, bud. Let's go. Let's go run this out. Like, and I mean, I have to joke. I mean, literally, with a harness on, and we just go run. So anyways, Kit, I must leave you right now as the. As my children have decided to show up a little early, as I've just been told. But thank you for this conversation. I think that the work that you're doing and share about reorientation and healing ourselves and having the agency to do so is so powerful. So thank you so much. All right, until next time on the Inch Jones Podcast.