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Autism, Caregiving, and the Struggle for Inclusive Communities with Kate Lynch · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi, everyone. Welcome to the Inch Stones podcast. Today I have a new friend of mine that brought our world's collided do and on substack. We're both writers in the neurodiversity space and Kate is a mother as well, of a neurodivergent child. And we share, we share a world and yet we also have differences. And I thought this would be a great time to talk about the cracks and crevices within the neurodiversity world, but also show that I really believe in the Japanese word kintsugi, which is when things are broken and put back together with gold, it's even stronger. I really believe that. And it's a pottery movement in Japan, but it's also a fractured, destroyed, and yet created beautifully anew. So that's what my hope is in having Kate on here today. She is a atypical parent and a mindful mother. And Kate, welcome to Inch Zones today.
• 0:59
  Speaker B: Thank you, Sarah. And I just love that. That's one of my favorite metaphors as well. I always try to remember to trust the gold.
• 1:08
  Speaker A: It's so, I mean, listen, it's so true. I think that the narrative about what we all can do together is something that we are finally, as a culture allowed to say in big, big, robust ways. And at the same time, the profound differences of the autism spectrum have been illuminated more and more. And I think that when it comes to non speaking, profound autism, there is a. It's scary. It's scary to live in that world where you feel like you belong under one, one umbrella, but your, your toe is sort of in the other more realistic one going. I mean, yeah, I love all that, but I got like three limbs cut off and no help, and I have to make sure that I'm, you know, keeping myself intact to even perform caregiving duties well beyond the age of toddlers in my home. What does that look like in comparison to another neurodivergent parent? And yeah, I'd love to hear. I think though, that that is the conversation that can be replaced with gold. I really do. I really, really do.
• 2:16
  Speaker B: Just breathing that in right now. Yeah. And you know, it's. It's super hard to be thinking in theoreticals and kind of mindset or mindfulness, as you have mentioned, or even wellness or whatever, when you're just trying to keep the people you're in charge of from dying or just unable to even like take a 30 second break or take a breath. Absolutely. And I actually have been in situations similar. They just haven't lasted as long they haven't lasted 10 years.
• 2:55
  Speaker A: Right, right.
• 2:56
  Speaker B: We were starting to talk about solutions which I'd love to get to. I will say that my son is not non speaking and he, it really, it was actually quite hard to figure out what was going on with him when he was younger and a lot of people were surprised when he got the autism diagnosis. And yet it does kind of fit pretty perfectly. And all of the challenges that we have worked through together as a family and are continuing to work through over the last 14 years, pretty significantly been under that umbrella. And the challenges are just very different from what you describe.
• 3:42
  Speaker A: That's, you know, honestly, it's one of the most easy, not simple, but easy ways in my, in my opinion, I think others of parents of non speakers and profoundly autistic children and young adults is. I believe that, that the hardships or the, the barriers to living fully or the barriers to learning fully based on, you know, a neurotype are endless for mothers like you and I and the constant pivoting to understand what presents itself versus what is, you know, maybe latent right now and what is going to emerge, like all these things. And I think that to get to the support aspect of what's needed, I think what I'm hoping to have continued to surface is the village that everyone is theoretically promised or right. Like, it's just, it's like no one's, like, there's just like it takes. No one raises their hand for it. Like, I mean, no one raises their hand to raise a child. That might not be anything of what we read about in, you know, babysitter's club or something growing up. And at the same time, when it becomes your reality, as it does for both of us, staying present to that and the incessant nature of it or the dangling, you know, it's called the Sword of Damocles, right. It's like always hanging over all of our heads of like, what? And it's, it's not just the other. I always, a friend of mine always said, well, when you know, it's like the other shoe's gonna drop. Do you always feel that way? I'm like, it's not just a shoe. That's the thing. Like, yeah, it's not a shoe. I wish it was just like, I really wish it was just shoe. And that is so hard to convey. I always say, like, the village, welcoming them to help is hard to not only just ask, I mean, and it's not, don't get me wrong, I have asked like over and over that People are so afraid of doing it wrong or so afraid of being so unprepared that they don't even offer. And I think that it's a systemic issue because it's hard enough to be a mother to allow your child to be obviously taken care of in another presence. The energy it takes for children like mine is both beautiful and brutal at the same time. Where do you. Where do you see sort of like the voices of parents like mine within the movement, this neurodiversity movement? Cause I really do believe in both. I really do.
• 6:12
  Speaker B: Yeah. Well, let's go back because I think this conversation that we started having before you hit record is really important. And I want to, while we're on this, capture that a little bit. So when my son was young, his name's Ocean, we really couldn't do babysitters. Like, it was either. Like, he was so in need of sameness. Right. That anyone unfamiliar, he would completely lose grasp of his nervous system and it was just too painful and too hard to. And, you know, would be days before his, like, routine would return and things. If it was me, my husband, or my mom. And my mom eventually moved here to Brooklyn because my sister had twins. So she wasn't super available. She was available and they have a great relationship, but she even was afraid to do things wrong and. And other people just thought I was bonkers. What, you know, like, well, so what if he skips a nap? Or so what if, you know, like. Or, you know, just kind of trying to tell me how, you know, how they had raised their kids. And it was like, I really wish that someone else could take over and tell me what to do and tell me how to do this because that would be really reassuring and that I would have more help. But I'm with him 24 7. You people have no idea what you're talking about. So I love what you started to say about, like when I asked you, well, what would be a level of support? Yeah. Like, it's not going to be the same as raising a neurotypical kid, but what would be the level of support that would be the needs of non speaking, very profoundly autistic kids in a way that would make it so that you don't have to be chronically hypervigilant.
• 8:03
  Speaker A: Yeah. I mean, this is like such a, you know, again, we talked before we pressed record A. This is a systems problem. Because if we're really looking at the reality, know, children like mine were institutionalized in the 60s and 70s, like, that is like full stop. Like that that happened, that, that a hundred percent happened. And I can, you know, the truth of it is, is that putting those children back with their parents was absolutely the right thing to do. And that that like, generalized movement towards keeping them in home should have been met with a full body of help to allow that child to stay generalized. It's, I mean, it almost is the Same mirror of IEPs when it comes to children in the educational system. Like, we want them to stay in the general classroom environment. We want them to be around their typical peers. We want, so you want these kids to be around their typical siblings. We don't want to separate. And yet at the same time, the, like, I wish I had boundless amounts of energy. Right. But as, as one mother to two children and you know, having two, I know that I'm also in a second bucket, but even just having one, that what it demands of you has to be met with reality.
• 9:20
  Speaker B: Yeah. And if only we could clone you, Sarah.
• 9:23
  Speaker A: Well, exactly. But I don't, but again, it's like, I don't even want that though, because I think that that's what's so interesting about it is that we have to engage and allow for 24,7 understandable care. It's like a, it's literally like an, like a hospital team, you know, of like, we pass that off. You know, this is what we did potty training wise, this is what went on, you know, games wise. This is where Spotlight, communicate. This is where the AAC and like, you know, that can be done. That, that is so far from where we are right now. That is why I think, you know, when RFK made that statement, it was less about, you know, the children and, you know, we're gonna find the answer to it. But like, oh my gosh, he's shedding light on a systems issue here. And if anyone's gonna talk about it, I mean, I, I, I could care less who the messenger is. You know, I think that we likely probably wouldn't be talking had it not been for someone as like, powerful, you know, so it's, I wonder where that rupture is also for the best. And so maybe that's what it's going to take to have more respite care for families like mine. More immediate understanding that this is going to take a very conscious building of a village for families.
• 10:38
  Speaker B: Yeah, really, you need a team.
• 10:41
  Speaker A: And I'm the first to say I have a team. Like, that's why I'm able to do this. Like, I know that I am in a very privileged situation to talk about this, but that's why I feel so compelled to do it, because it's like, if I am able to do it and it takes so many resources and so much financial stability, how the heck are most people doing this?
• 11:03
  Speaker B: Absolutely right.
• 11:04
  Speaker A: They're completely in the fetal position, rocking and allowing their kids to loop and stay inside all the time. I mean, I get it. Like, I get it. So I don't know what your thoughts are more on that, like, what could change. But do you feel the same way? Do you feel the same way about Ewan being the mother of ocean?
• 11:23
  Speaker B: Well, I feel like when I first realized when he was six months old, that there was something going on that I was concerned about. And then at a year old when, you know, they still, like at the doctor's office, they asked all these questions. They were like screening questions. And I answered no to every single one of them. And they. And like, then they come in and they're like, oh, yeah, so what's going on? I'm like, he's not walking. He's not even able to crawl, like, off his belly. Like, he was commando crawling on his belly everywhere. Um, and I mean, we, like, we were so over the moon, head over heels in love as, you know, like, it's our first time being parents. We have one kid. We stopped after that year. Like, we were like, no way. I was terrified of getting pregnant again because it had been just the most, like, it almost destroyed me. It almost killed me. I was 41 when I had him. And the lack of sleep was like, intolerable. Like not sleeping more than two hours at a stretch. All these things that I know all the parents here understand already.
• 12:33
  Speaker A: And I think that if anything, did you feel. Cause I, again, I had a. I had a severe postpartum psychosis with my first, like, severe. And if, If I'm being honest, I think it sort of shed some light on myself and my own neurocomplexity. Do you feel like it's that. That when you look back, it kind of informs you more about who you are?
• 12:52
  Speaker B: Certainly there was anxiety. I. I know I've always been anxious and I'm a highly sensitive person, which I didn't know about, but I knew I was anxious. And of course there's that desire to get it right. And then there were all these things that were not quite the same and people starting to look side eye at us and starting to, you know, ask questions, but never say anything straight. Even professionals that I, you know, we were around in like, playgroups. And stuff. I could tell as we were around more and more other kids that there was a difference, but nobody came out and said anything to me. So it was all about, like, overhearing. I overheard these two parents in the playground talking about self referring to early intervention. I was like, it's early intervention. And then, you know, I just. I felt like I had to put this whole thing together all by myself.
• 13:41
  Speaker A: You don't even know what puzzle you're putting together.
• 13:43
  Speaker B: No, I have no idea.
• 13:44
  Speaker A: I don't even know what I'm putting together. I'm just. I'm grabbing some pieces, though.
• 13:47
  Speaker B: Yeah, I'm gonna. I mean, I originally did not think autism, and, you know, like, he ended up going to a neurologist, and I was, like, looking around the waiting room going, this is not where he needs to be.
• 13:57
  Speaker A: Yeah.
• 13:57
  Speaker B: But then she recommended a book, and I read the book, and I was like, asperger's. And, okay. And then I read it to my husband, and he's like, nod. He was totally in denial. But what I wanted to say was, like, the. The gatekeeping is in that system is in all the systems of the people who hold the power, the government systems that hold the power. Yes, we have ada. Yes, we have idea. I'm sure all your listeners already know what all that means, unless they're in other countries. It's just that the laws that are on the books already, but each state, each municipality, like, doles it out, and they're the ones holding the purse strings, and they get to decide how much you get and, like, this other person. So then I had to, like, learn all this stuff. I thought I. I felt like I was giving myself a master's degree or, like, basically, like, learning a whole new language. And I don't want any parents going through this alone. Like, it's not fair. It's absolutely unfair. And I actually had friends whose kids were neurodivergent. I had a friend who. They were in my prenatal yoga class. Two other parents have kids who ended up being neurodivergent. And, like, our kids are still close friends, and we still connect with each other. And one of them, her dad was a pediatrician. So at least I had that. You know, like, I had my little tiny community, and I had that, you know, she was giving me advice about, like, oh, yeah, you know, go to this place for your evaluation. If I didn't have that, like, I would have felt even more isolated, even more confused. And the gatekeeping, it worked the first time. It didn't work after that, I learned my lesson. And. Yeah. Like, it sounds like you have really been able to advocate to get what your kids.
• 15:49
  Speaker A: Yeah, I think so. I mean, I. Again, this is like one of those things where once you see it, you can't unsee it. Once you realize that the system that we have structured, which don't get you wrong, like, in some ways you and I are here because we didn't stop advocating. Right.
• 16:04
  Speaker B: We. We worked the system and we have privilege.
• 16:09
  Speaker A: Yeah. Yeah. We have such privilege to it. And what does that say about a society who has the most vulnerable people being not put away, but just sort of pacified enough that they don't disrupt the conditioning that we want to just keep on keeping on? Right. And that it's almost like there's a. There's an Acela train going and it's like we've got a small little locomotive over here. It might get you where you wanted to go. Probably not. You might have to get off a few times. It's. It's so rickety. We'll see where it takes you. That's what it feels like. And you're. No, no, no. I deserve. Exactly. I'm a human. I got a pulse. Like, I. Yeah.
• 16:53
  Speaker B: And my children are human.
• 16:55
  Speaker A: Yeah. And it's. It's really, I believe, like this awareness to the limitations of the system. And if we cannot call that out from a caregiver role, especially children that don't talk, it does become a catch 22 of like, well, then what am I supposed to do?
• 17:14
  Speaker B: Well, you have to be their voice. Right?
• 17:16
  Speaker A: Right.
• 17:16
  Speaker B: Until they can find ways to communicate, you know, and as parents, until our children are of age, we are to some extent going to be their voice. I'm overjoyed that my son is a good advocate, you know, self advocate. He has become a very strong self advocate because he saw me advocating for him and for myself.
• 17:39
  Speaker A: I mean, I couldn't agree more. Modeling. Modeling, modeling. I mean, that's.
• 17:45
  Speaker B: And it's really short sighted for our culture to. To not give families what they need in order to help their children thrive to the extent that they have potential to thrive in whatever ways they're going to thrive.
• 18:02
  Speaker A: Right. And the complexities of that versus other things that as a society we put as more important or. Yeah.
• 18:13
  Speaker B: And that was the thing that really triggered me was you mentioned the RFK statement. And you know that just that first thing that keeps going around is like, they won't pay taxes. Like, who cares? You know, other people need to pay taxes like these Kids have value. They.
• 18:30
  Speaker A: They are human.
• 18:32
  Speaker B: Just by being humans, they have value. And don't try and put a financial value on what they'll contribute. That's not what this is about. This is about humanity.
• 18:44
  Speaker A: And there's a. Again, this is like a systems thing. Like, we're part of the media, right? We're part of the message. We can't deny the fact that, like, when someone's in a position of any sort of politics, whatever country they are, they are going to have narratives framed around them. The medium is the message, where he speaks, how he speaks, what color, you know, it's gonna. Everything. And the. I think it matters less about the words used than if people kind of finally feel like, wait a second, did someone just mention my life like we did? I don't really. Wait, did that. Like, it doesn't even matter where it comes from. And I'll be honest. I mean, as someone who had to really dig deep in 2016, I was like, how, okay, if 75 million people in this country voted for Trump, I have to listen. That is a lot of people. We cannot turn away from things that make us go, well, they're just. They're not right. They're not right. That's a lot of people. And that's what I sort of feel about this movement now. It's like, when enough people are going, whoa, whoa, whoa. Like, I know he didn't say it right, and I know he had, like, the semantics. It was messy, it was terrible. But, like, can we maybe talk about how he addressed, like, a population of people that, like, have historically been told that, you know, they're not worthy of massive amounts of societal help or massive amounts of restructuring.
• 20:13
  Speaker B: I wish that I had heard that, because if he had said that, I definitely would have wanted to hear it. I feel like what he was saying was, now we're going to start researching when the research has been ongoing systemically.
• 20:27
  Speaker A: But what I'm saying to you is, let's rise above that. What are we saying about the systemics of science in this country or in the world? Why are we so convinced at anything that pushes the system to grow? Why are we so convinced? Why are their parents. And again, I don't. I'm not looking to change my children, but I do want to have more answers about their bodies and apraxia and why they can't speak and control their bowels, their brains and how they think. And what I'm seeing in their development is so freaking cool. Like, I love it. I think it's incredible. If. If the messiness of someone's words allows for more people to go. Yep. I. I can't. I. I never had the confidence to say. I'm gonna say it now. Maybe that's what it is. You know, maybe helping them feel.
• 21:14
  Speaker B: Seen, less isolated, maybe even hopeful. Yeah. Change.
• 21:19
  Speaker A: Because I think that there's not. There's no way. There's absolutely no way that change can happen unless someone comes in. And maybe this is also it, too. I mean, you and I. I mean, we're. We're both over 40 years old. We grew up with parents who knew RFK Senior. Right. Like, Robert F. Kennedy is his dad. Okay. And if we want to say genetics are really powerful and that there's two people that cause autism for my kids, my child's father and me. That's who caused my children's autism. RFK Senior was like a rebel. He was, like, taking down bureaucracies. He was challenging the systems. What if his son's just doing that? Maybe it's messy, but what if, like, what if, though? It's. What if the possibility is just. He's. He's just taking a chainsaw of the system?
• 22:01
  Speaker B: Sure. That's. I love that perspective. That's great. But I'd much rather see you up there.
• 22:08
  Speaker A: But it's like. It's not right. But, like, he isn't. He's not bad. I mean, he cleaned up the Hudson River. You're eating fish in the Hudson river now, Kate, because of RFK Jr. Whether you like it or not.
• 22:18
  Speaker B: Like, I read his book about the Hudson River. It was really inspiring. Yeah.
• 22:23
  Speaker A: My mom's an environmentalist, and she is very, very, like, you know, I can't believe you're supporting. I'm not supporting. He actually took on environmentalists for the Gibson river project.
• 22:33
  Speaker B: Yeah.
• 22:34
  Speaker A: I don't know. I think it's bigger than anything that you or I can say. It's one thing because Big Pharma funds all the studies, and Big Pharma is based on opioids and.
• 22:45
  Speaker B: Yeah.
• 22:46
  Speaker A: You know, it's just. There's. There's so much more to it than I think me and you can ever understand that it is a systems problem. But I hope that acknowledgement of the real experience, and I mean that from yours, from Dr. Emily's, mine, you know, anyone that's experienced this can just continue to share what they're actually living so that maybe the society does come and it changes, the system changes. What do you think? What would have helped you, do you.
• 23:17
  Speaker B: Think in those early days, like, Ocean was born 2010. So I feel like there was a lot more stigma and less understanding then. Certainly no neurodiversity movement at that point. There were a couple of people on YouTube. There was no TikTok. There were a couple people on YouTube who were self advocates that a friend shared with me. And you know, I watched those and I was like, yes, absolutely. You know, this is so great. But my understanding was reman, you know, that was it. That was it.
• 23:55
  Speaker A: Yeah.
• 23:57
  Speaker B: And that's why so many people around us didn't believe me.
• 24:03
  Speaker A: Correct, Correct.
• 24:04
  Speaker B: Even though my son, you know, my mom said at one point, like, well, he's, he's a genius. He's just bored. This was when he was about a year old. I was like, he's just bored. So he's not able to walk. Like, what does that, what are you even talking about? And he did speak early. He said words at like 10, 11 months he was saying words. He did not identify me as a separate human being until he was probably at least three or maybe four.
• 24:31
  Speaker A: I always think about that, like, that's so beautiful. I mean, I thought we were one person.
• 24:35
  Speaker B: So we never, he never said mama.
• 24:38
  Speaker A: It was like, like, yeah, there's no.
• 24:39
  Speaker B: Separate mama and ocean. Yeah.
• 24:41
  Speaker A: Like, I think from a primal, like divine place. Like, I mean, I get it as someone who is meant to be a mother, I mean, if society said nurse your kids till they're 10, I'd be like, I'm all in, man. I, I think I, I must have been a wet previous life because I freaking love everything about it. But what you're saying makes sense. Look, I, I, that's how there should be.
• 25:01
  Speaker B: Yeah.
• 25:03
  Speaker A: Every.
• 25:07
  Speaker B: And I felt, yeah. And I felt completely enmeshed with him. And I also felt like a terrible mom because he had so many meltdowns and he did so much crying and we didn't, we had no idea why. Like, we couldn't figure out the code. It was like, so, and then I felt a lot of shame. Like if I took him somewhere, people would give us the side eye. They, you know, to baby groups, even places that were supposed to be inclusive. Like there was not the level of inclusion people talk about. And that's why I really try to go beyond lip service and be truly non judgmental and truly inclusive.
• 25:48
  Speaker A: Well, like, that's good. The institutions used to say it's almost like inclusion, the I word just changed. Right. People are like, okay, well we don't institutionalize children that are different or families that can't keep up. We Include them, but we'll keep them separate. Right.
• 26:02
  Speaker B: We include them, but as long as they can fit in and not distract the typical kids.
• 26:07
  Speaker A: And if my curiosity, again, I think about this kind of stuff so much. Yeah, we are prime. Actually, a friend of mine who was doing research on this, she said, sarah, research shows that we are primarily wired to be curious to things that don't match. Like mismatches. Right. Like someone staring for half second long, they don't even realize. Like, they. They know they're doing it, but they don't realize they're doing it. They don't even realize how acute you are to recognizing that.
• 26:34
  Speaker B: And then hyper aware of any kind of, like, look or judgment. And probably because I was in that fight or flight response in my nervous system, I couldn't. I couldn't see things in a neutral way. Because I threatened.
• 26:49
  Speaker A: Yeah, of course. Of course you did. I mean, again, because I think primally, I always use the example, like, if I take Millie and Mac and the dog for a walk around the neighborhood, it's like an easy block and I live in an adorable town and it's so safe and friendly. But me and those two walking around with the dog and like, getting Millie to hold the leash, you know, I mean, Mac has a harness on and, you know, we. Do you think we stick out? Yeah, it's. Yeah, we stick out. And I know that people know us, that they know or they know who we are.
• 27:19
  Speaker B: Like, they're familiar with you.
• 27:21
  Speaker A: They're like, oh, that. You know, even they don't know my name. Oh, that mom that has. Yeah, yeah, yeah. And that mismatch alone, you're like, well, I'm so much more than that. And we need to normalize that curiosity to not impede inclusion.
• 27:34
  Speaker B: Absolutely.
• 27:35
  Speaker A: But how do we do that if we're primarily wired to do it?
• 27:38
  Speaker B: You know, kids are. Don't have all those assumptions and those biases. I remember when. But they still see difference. You know, they definitely see difference. So I remember when Ocean, I was able to drop him off for short periods at the Y and go teach a yoga class and come back when, like before he started school. And there was a little girl who was in there about a year older than him, and she asked me, like, why does he jump all the time? And I said, yeah, you can ask him. He can talk, you know. So she asked me, said, I'm excited. She's like, okay. She was just, you know, she was just curious. Like, okay, that makes total sense. You're excited.
• 28:15
  Speaker A: Yeah, yeah. And I think that then that comes from a family who has allowed her to ask questions. Right.
• 28:22
  Speaker B: Like the family, the parents would not be asking the questions, but she would ask the questions.
• 28:27
  Speaker A: Or, or, or she's enough or she's removed. I mean she's at a playgroup or at a drop off that age. She's only four, you know, take care. Right. But she doesn't have her parents around. So we don't know whether maybe her parents are great inquisitors of life or maybe they're not. And that's the only place where she feels safe. I mean, it's so complex and the, the notion that, you know, the, this whole thing is gonna be a, like a container for everyone. I think maybe that's really the foundational shift. I hope that that can happen within the system that probably doesn't really at the end of the day is gonna become from as you said before, we press record small movements of pockets of mothers and caregivers or pockets of families that sort of slowly move the needle. Cause I do believe 1%, you know, a 1% movement is. Can do make large strides for people. But yeah, I mean it does. Yeah. Kids, Kids are so inclusive. They don't know anything else. And yet by the time they're in first or second grade, they're in public school and taken in the world, so.
• 29:28
  Speaker B: To speak to that a little bit. Because my son was in an ict, like a micro ict, like smaller size group with four kids with autism, eight typical kids throughout elementary. Like it really depended on the teacher because it's public school. But he had this one teacher that was so experienced right before COVID And when I was in the classroom one time, he, they were all going back. I was, it was like Friday visit day or whatever. They had a good name for that. But they were all going back to their tables to do a writing assignment. And I was like, ocean, sit down. And all the kids at his table said, no, Ocean's mama. Ocean doesn't sit when he's writing. He stands when he's writing and he jumps when he's writing. And that's how he writes. And so they were educating me in inclusion in that case, you know.
• 30:23
  Speaker A: Right. Like you. Yeah. Because you grew up in a way that I grew up in, which was.
• 30:27
  Speaker B: Like, we all sit, we all hold still. Even if it's the worst possible way.
• 30:31
  Speaker A: To learn what's going on internally with an ocean like you think, you know, but you're not a child anymore. And so you're observing him even as a, even as his mother. You're observing him as a conditioned adult.
• 30:42
  Speaker B: I'm also hoping that he'll be accepted. But the thing I didn't realize is that the teacher had created the conditions for acceptance and inclusion in that classroom way before I got in there. And it takes modeling and leading and yeah, kids can learn it, but they may not be learning it at home. Or they might, you know, hopefully they are, but a lot of them aren't. So the teacher really matters. Then he got to middle school and a lot of the teachers were like first year teachers. They had good intentions, but all they saw. It's like when I was a first year yoga teacher, or at least even first 10 year yoga teacher, all I saw was the one person who's doing handstands in the corner. Not everyone is following the sun salute that I'm leading or whatever, you know. So all they saw was this one kid doing this, right? And they couldn't concentrate. So instead of regulating themselves and dealing with their themselves and trusting that that kid is doing what they need to do, they told me about it and they're like, oh, what are we going to do about this? I'm like, nothing, nothing. Like, he's distracting. You can model the fact that that's not distracting, you know, like you can decide whether that's distracting or just the way he learns. And everyone else will follow your lead. Everyone else in the classroom will follow your lead because you're the leader here. So lead. Mm.
• 32:06
  Speaker A: I mean, I wish that kind of teacher that you shared about with your son, that is, I mean, gosh, talk about cloning. Can we clone educators like that? Right? That's, that's what we hope. And you know, we're, we, we want to have the best teachers nowadays for children with severe autism are the ones that are just coming out of, you know, higher ed because they are so fresh in their early 30s, right? They grew up and their, their environmental conditioning was a lot more open than maybe yours or mine was growing up. So that they, it's just this stretching that keeps happening. And at some point I do think that. And there's gonna, there's gonna be these little rips along the way, right? It's just like anything, it's gonna be tiny little fissures that end up, you know, reminding us all that it's going to take more than just the mom. It's going to take more than just one educator. It's going to. And I don't even know if, to be honest, I mean, I don't know if we have enough to change the system? I. I don't know.
• 33:06
  Speaker B: Yeah.
• 33:07
  Speaker A: I don't know. But I do think that it. That if anyone presses pause to intake stories that are so wildly different than their life, it's a move in the right direction.
• 33:18
  Speaker B: Absolutely. And, you know, you brought it right back around to, like, filling it in with gold. Those little rips.
• 33:25
  Speaker A: I mean, it's just.
• 33:26
  Speaker B: That's so beautiful, Sarah.
• 33:28
  Speaker A: Oh. I mean, it's. It really, really is. I mean, ask anyone if their life was free of pain. Oh. I mean, being alive is saying, yes.
• 33:37
  Speaker B: Struggle.
• 33:37
  Speaker A: Painful. Yeah. Full suffering and the pain of being alive. And I think that those of us that can sit in the hot loneliness of it show up for it. And also say if. If anyone has a moment to. To center, like, some really deep, structurally hard things to maybe ingest. To choose to ingest it, whether it's through a life of a family member or, you know, neighbors or community, that says a lot about it moving in the right direction. Right. Because there's a lot that still needs to be done in the neurodiversity movement, and I really do believe that there is. I mean, the competitive advantage. You want to talk about society growing, about children like ours that are going to see and grow things differently. I mean, I place my money on that. I really would. I had a friend who met my daughter years ago, and this is when Millie was starting to use her AAC pretty proficiently, and they were like, I want to take out stock in Millie. Can I buy stock in Millie? And obviously, I've shared more about her growth and such. This person was like, I knew it. I knew it. They have something to offer, and it's because we need more and more and more and more support than you ever realize that you had to give.
• 34:54
  Speaker B: Yeah.
• 34:55
  Speaker A: Do it.
• 34:56
  Speaker B: They need more support, and, like, our society has to provide it.
• 35:02
  Speaker A: This is like, a whole other study to do. But, like, what is autism and what is like a little. Like a. Like a feral little boy versus a little girl? Strip. Autism aside, he is. He is. He's a puppy. He just needs to be run. I mean, he jumps and he stims and he's. But that boy has so much, like, primal energy. It's so different than girls. And Millie just. She's just, like, right here. She's like, I'm gonna take over the world, and you guys just figure me out as I go. I love it. I love it.
• 35:30
  Speaker B: That is so great. It's great to be able to appreciate and also honor the struggle. Right?
• 35:35
  Speaker A: Yeah. Again, that's, that's maybe that's the biggest lesson in all of us, is that it's gonna, it's gonna be like the legal scale thing, right? Where it's like a constant cracks and.
• 35:44
  Speaker B: There'S the gold and makes it like something completely new.
• 35:50
  Speaker A: Completely new and unique that we're all doing. I really do. Well, Kate, thank you so much for your time. I really appreciate it.
• 35:57
  Speaker B: I love this. Sarah, thank you so much.
• 35:59
  Speaker A: All of you're doing and continuing to be that space because, you know, as this movement changes and evolves and reorients to whatever is coming next, because things are going to come next, because we have a pulse and we are lucky to be alive. So thank you for your time and for giving my listeners a bit more about your life and what you do as a person. So thank you.
• 36:21
  Speaker B: Thank you, Sarah, and big hugs.