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Autism Parenting, Grief, and Finding Yourself Again with Jean Mayer of Moms Talk Autism · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inchstones podcast. As mentioned before, the month of May here on Inchstones is all about the moms. And drilled down one level deeper is that one on one conversations when you put two women in a room. Specifically autism moms. The connection and what's built and what grows from witnessing and listening to testimony of another autism mom and her actual journey, I believe builds a entirely strong foundation for all of us and as individual mothers and women. I have Jean here today. Jean is one of four women from the momstalk Autism platform and podcast. I had the wonderful pleasure of being a guest on their podcast. They came on as a group on Inchstones and when I thought about the moms that I want to amplify to deeply share their own personal journey, it was so apparent and number one on my mind to get these women on here individually. Jean is in Texas, outside of Austin, and she has a son, Rory, that
• 0:56
  Speaker B: is on the spectrum, and she's going
• 0:58
  Speaker A: to share a bit about her journey today here on Inches. Jean, thanks for being here.
• 1:02
  Speaker B: Thank you. Thank you for having me. I'm so. I. The moment you message us about this concept and idea that you were thinking, I could not. It was irresistible. Awesome.
• 1:14
  Speaker A: You know, I know you guys do this too, but more than anything, I think telling the truth in reality about this life is not just what it. Not just what it takes from us, but what it gives us. Um, so let's dive right in. What. What really was the moment that shifted everything for you? Can you take us back to the beginning with Rory and what that felt like?
• 1:33
  Speaker B: So for me, it wasn't just one moment. It was like a series of realizations. It was a slow noticing and noticing the disconnect between what we were told versus also what we were saying. You know, immediately identifying those gaps. Even if you weren't in a place of acceptance yet, you know, you were just navigating even the diagnostic process. But even once you got diagnosed, you know, you just start. It was just like, slow noticing pieces. There wasn't like this big, like, crescendo. Mm.
• 2:09
  Speaker A: Do you. What did that season feel like for you? Cause I know different people experience it. Sometimes people have this, like, very immediate switch, that slow buildup. What did that feel like?
• 2:20
  Speaker B: It was. I was ridden with grief. Um, I. I knew that my life was forever going to be different. Like, whatever idea I had about my life, my family's life, my child's life, all of those things, you basically have to. It's a divorce from them and. Yeah, yeah, you're doing that while also navigating. What do you need to do for your child? It was very heavy. Like, it was very heavy time. It was definitely one of the hardest periods of my life that turned into huge period of growth for me. But that was a combination of several years. Right. Like, that didn't just happen in a series of months or weeks. This was. This happened over a period of years. And I wish I could tell someone that you put them on some accelerated path, but it's the journey that you have to walk through and just being where we were in the world. I mean, every parent. Every parent walks through that. In terms of. Especially if you were diagnosed 30 years ago and what that diagnostic journey you had, these external factors, the world changing, the landscape changing so much also impacts how you're feeling.
• 3:47
  Speaker A: Yeah. You're hitting on something so universal that a lot of moms that I talk to have shared is that it's the shattering of this, of this dream or whatever you built as your future as a mother. And there's also this, like, unconscious knowing that you were sold something. You don't even know how you were built to think that, like, I. There's this societal conditioning thread that until something so drastically changes that preconceived reality, you don't even realize how conditioned you were to expect something. Would you agree with that?
• 4:24
  Speaker B: Yeah, because it's. It's an undoing. Like that.
• 4:26
  Speaker A: It's an undoing.
• 4:27
  Speaker B: Yeah. And it's. And it's honestly all stemmed from. And I used to talk about this a lot, and I. I always kind of try to interweave it back into our conversations. But in the area, in the field of psychology, there's the family systems theory. Well, the family systems theory is really what drives. It gives you the. The structure, the scaffolding. Of what. Of how the world approaches family life, us. And you don't realize how that indirectly is involved in what you. The life that you're groomed for as you grow up to be an adult, like, what you're thinking. And disability is framed as this thing that's wrong that makes the family bad in the actual traditional sense of the family systems theory. And so moving there, there are people in the field that are trying to create that paradigm shift, but we haven't made that shift. And when you're a parent, when you enter this world, you don't even know that those dynamics are at play and, like, why it is that way. But once you actually really soak in that, that's what's happening. The Way you, your lens is and the way you see the rest of the world is. Is forever changed. And that can be lonely, too. That's lonely. Knowing that, like, this is why it is that way, and knowing that, how do you as a parent now in this realm, impact that paradigm shift as well. How do you change that narrative? And that's why we have these, these tensions between the social model of disability and the medical model of disability. And the social model really typically at this point outpaces where we are medically. And there's not a lot of people that can
• 6:17
  Speaker A: integrate.
• 6:18
  Speaker B: What's the word they get? Not even just, yeah, integrates one word, but also like, like convert, you know, can.
• 6:24
  Speaker A: Yes, yes.
• 6:25
  Speaker B: It can translate and translate. Right, like where that they can code switch. You know, as a medical professional and wearing that hat, like, still knowing that the medical side is a pathway that needs to be exercised and utilized, and it's for us to get supports and services. But when you don't have that medical professional that can have both of those lenses, the two areas become very siloed and you feel like you live in multiple different worlds. And not to mention just in our own little ecosystems as, as moms, like our family dynamics, our community, our local community, our neighborhoods, our schools, those types of things. Like, there's a lot of silos, and we're having to navigate them. It's all fragmented, and it's really, really hard to navigate the.
• 7:15
  Speaker A: And, you know, to magnify the word hard, I think, you know, we were always told. I don't know what your algorithm is showing you now on social media, but mine's always talking about, like, nervous system regulation and, like, energy and all these things. And I, I to your point about these siloed multiple different realities that you live in and sit in because of your children's diagnoses and what each carry for them, the amount of energy it takes to then jump from all those different ones, integrate all those, and continue to shed sort of this. This identity that you have upon entering motherhood and then evolving into a different one through your own children and in your own family's dynamic and diagnoses. I know for me, that was. That was really painful. You know, I was a mom of a typical toddler, and I think I, I don't think I realized how strongly I wanted that to be my identity. I don't think I realized how much of a chokehold I had on that. And the pain and the grief that you shared off with before comes with those multiple realities that, like, you have no other choice but to shed it. Like, it begs that you have to, because if you don't, you almost extend the grief and almost like, create more internal pain.
• 8:30
  Speaker B: And it is. I mean, the sad part of it is. And it's not on purpose, meaning, like, it's not. I should say, it's. When I say. Well, I should say we're not totally conscious that it's happening.
• 8:39
  Speaker A: Right. That's true.
• 8:40
  Speaker B: That. That we are doing that to ourselves. We don't know. You know, a lot of us have these attachments and it's very, very hard to become unattached from those things. And like, the saying goes that your new life is going to cost you your old one. It's. Even if it's not the new life that you chose, be like, this is what's happening, buddy. Like, this is what's happening now and it is gonna cost you. I mean, I feel like. I feel like I live in a completely different world now. My life is totally different. Nowhere near where it was almost 15 years ago. It's just not the same at all. And not. Not doesn't even touch it. Like. And that was really my. My identity. So much of my identity was built up in. In who I became in my. My career and what my life used to be like. I used to live Becky. So I was from Baltimore, Maryland, and had whole career in business and food and beverage and catering and events. And I just. That was who I was. And I thought when I get us settled here in Austin, like, you know, I'm gonna get that all going here, because I can do that. And as I'm starting to do that, I'm also going through the diagnostic journey with my child. And I'm like, this is not shaking out how I thought. I'm like, this is not. I was like, I have this sensory seeker in my house. There's absolutely. He cannot be unattended for a second.
• 10:13
  Speaker A: Yeah, for a second.
• 10:14
  Speaker B: And I, you know, and now I'm the manager of all of these 40 plus hours of therapies and educational plans that he has. And it's like, how did this happen? It's. But it happened. How am I going to say, no, you're going to do the thing that you need to do for your kid. Yeah.
• 10:31
  Speaker A: Have you ever felt. Have you ever felt like it was unfair?
• 10:36
  Speaker B: Yeah, I definitely felt like. I felt like it was. I felt like it was unfair. I felt like it was unfair because it felt so unfair that people didn't understand. Wasn't, like, unfair. Like, why did this happen to me. What was unfair was the lack of understanding. That's what felt unfair. Like, this feels cool. How is it that. And I'm somebody, you know, and I used to say this all the time, and I still think it's relevant now because when you think about it, somebody who has the wherewithal to get even and I had to give up, like, my career. Like, that's because. Give up that to. To do this. Like, this is now my career was to become my child's advocate. And like, how do people who don't have the ability to, like, the agency, the ability, the capacity, the wherewithal, you know, whatever their barriers are. And I'm like, that's what was so frustrating. That's what I felt was unfair. I felt like, yeah, that's what's unfair. I. That's. That's what was unfair. I didn't feel like it wasn't a woe as me. It was just like, it was a. Why don't you understand me? Why can't you understand this? How I feel like you're jumping up and down going like, why don't you get this? Just like, that's a really. Do you think I'm making this up? Do you think this is, like, in my head? Like, no.
• 12:01
  Speaker A: Yeah. I mean, that's just.
• 12:02
  Speaker B: And people were. And people oversimplified it too. And that was painful. Was like, you know, oh, you're just in the trenches right now, and you just wanted to, you know, throw, punch somebody when they said that, you know, I'm like, no, no, this is not the trenches. This is. I hate to break it to you forever. And I've learned that this is not just a cute. Yeah, it's a forever trench. And the trench may change and it may deepen and it may widen and it may have, you know, certain other ways.
• 12:33
  Speaker A: There's arrows. There's arrows being thrown at me the entire day. So I'm in the trench, the arrows are shooting down from the. From the sky, and I'm basically told to find cover where there's none. And I think that you hit so damn beautifully, and it chokes me up. It's not unfair about who our children are. It's unfair that the world's response to our children being who they are is not met with the most intense understanding and support that you would think would just happen based on the goodness and morality of being a human and especially being a mother.
• 13:14
  Speaker B: Yeah. Yeah. I mean, you learn so much about humanity real quick. It's like you. It's becomes. The contrast is, like, almost immediate. You start to notice those. It's. It's hard to unnotice it because it's like, where a world where you once belonged, you now are an outlier, you know, and then you're trying to navigate, well, why is it that I'm an outlier? Like, this shouldn't be this way. Like, why is it this way? You know? So then you're just, like, becoming a, you know, one of the other many levels of expertise that we don't plan on having is that you also have to become an anthropologist on this journey to learn, like, why the world is this way.
• 13:57
  Speaker A: It's seriously so true. Like, I find myself, like, a broken record being like, I want to go back and get my PhD in evolutionary biology. Like, I'm not kidding. I really. Like, I obviously do not have the time or the wherewith the bandwidth to do that, but, like, it pulses through me. I'm like, I want to know more about evolutionary biology because I feel like it would inform me so much more about my kids.
• 14:16
  Speaker B: Well, you get that. And I want to be a modern anthropologist. And then we'll go on the road.
• 14:21
  Speaker A: I mean, clone myself. And one. One part of me does that. I mean, it's so true. It's like. And I guess, you know, to have a silver lining. Sometimes those dreams that come up in me of, like, what this is teaching me, I realize it taps into the parts of me that I've not explored, had it not been for my children, being who they are. Like, I like that. I want to learn more now. I like that. That. That's always been in me, but this has brought about, like, in a fever that I can't help of. Like, I don't watch TV anymore. Like, I literally just consume information and reading case studies and stuff because I genuinely love learning about it, even as hard as it is. Like, someone at my typical daughter's basketball game said, have you watched this show? I'm like, I don't even know what you're talking about. Like, I don't even know what you're referencing. And everyone's like, you don't. I'm like, guys, I know Caroline Bassett Kennedy is like, JFK's wife that died in the plane crash. But, like, what are you talking about? There's. Where do you live? I'm like, I live in a profound autism world.
• 15:19
  Speaker B: I want to watch that, by the way. And I'm just like, I want to watch it. You don't? No, I don't have. I. It's so funny. Like what I'm able to carve out time for. And I will. It's so weird. I did watch the Madison. That's four episodes.
• 15:34
  Speaker A: I don't even know what you're talking about.
• 15:37
  Speaker B: Well, it's actually a really great show about grief. Like, okay, okay.
• 15:42
  Speaker A: So that might be a lot of
• 15:43
  Speaker B: just like, like there's not the disability factor, but there's just very sudden death and this impact of the family dynamics infrastructure. And I think that they're very powerful moments. Like, I'm drawn to shows where I can get the anthropological. Yes. Aspect from it. Like, okay, where does this fit into my now current preferred interests? Because let's be honest, the neurodivergence probably does not fall far from the tree.
• 16:11
  Speaker A: No.
• 16:12
  Speaker B: In that area. Like, I know that I'm dyslexic, but, you know, I feel like I have undiagnosed ADHD and possibly maybe a little, you know, I'm somewhere on the spectrum. Who knows? But I don't have time for my own diagnostic journey at this moment. No, I'm too busy trying to save the world. Like, literally.
• 16:31
  Speaker A: What was I just going to say about grief? More and more people. And again, maybe this is based on who I, you know, consume. As other advocates and special needs parents online, I do think that more and more of us are. Are talking about the grief. Do you notice that at all on what you're taking in? Um, not from a negative standpoint, but just from an openness one.
• 16:50
  Speaker B: Yes, because there was a lot of attacks that parents like us when we started talking about our grief, about it got attacked. Right. And so then you had a lot of voices rise up to push back and say, we're not saying we're sad about who our kid is. That's not it. And we can still be sad because this is life changing. And we're sad because we also can't get and we can't make the world be the way the world should be for our children. You know, and, and, and there are things that, you know, why I don't not. We do not subscribe to the cure culture. You know, there are things that impair our children that we wish we could take away. Right. Because they're struggling and suffering. So if we could reduce that. So there's many sides of the coin. We just live in this, like, binary world now where it's like, well, you're only on one side or the other. I think there were people really moms like us. And we did because we created, we had A whole grief series. We still do and I will plug for that. We have definitely installments that we, we go through all five stages plus the adaptation piece. And then, then joy and grief coexisting at the same time, which is like this very like taboo topic to think about. Because if you actually are experiencing joy, then it's like we're so scared that people are not going to believe us that it's still hard. So if you're ever putting out like that, you know, so it's. You got complexity and you build up, rebuild up of yourself.
• 18:22
  Speaker A: Yes, complexity and nuance.
• 18:24
  Speaker B: I mean, this is the world we live in.
• 18:26
  Speaker A: Yeah, I don't think we've ever not lived in that world. But I think that it's like, like I, like, I don't think, you know, I don't know about you, but like you, I talk to my parents a lot. They don't live nearby, but I talk with them a lot about the. Yes and always of all of this life. And my, my mom and dad are like, I just didn't. I know what you're saying is real, but my, my dad will always say, like, yeah, you're right, I just didn't grow up like talking about it as much as you did. Like when you say that I believe you and I hear you and I'm like, yeah, I do the same thing. But it's not, it's not this like amplified or augmented topic. It wasn't back then. So I don't think it never. It didn't exist. It just wasn't discussed.
• 19:05
  Speaker B: Maybe it wasn't and you weren't. It wasn't considered to be socially acceptable to talk about it. Right. Like you buried those feelings because part of the, part of our society is that we're very ableistic and that, that's a conditioning that we have that we don't know. And yet it's very confrontational for us as parents when we're like, oh, wait, I apparently had very ableistic tendencies. And I think that I would be kidding myself if I still don't struggle with that. Because again, when you're in different environments and you recognize that people don't get your kid, you immediately want to extinct or reduce what's happening. And it's not always. I'm not always my best self. Right.
• 19:57
  Speaker A: So like I said, it's an impulse reaction to what you've been trained unconsciously by the world for decades. You know that that very old phrase like you can't teach a dog new tricks. You know, you talk about grandparents. My parents are boomers, you know, aging parents. I can only imagine how hard it is for women like you and I who were thrust into this role. And I know how hard it was to change and evolve, getting to think about these things. 30 years. Like if Sarah at 70, I can only imagine how hard it is to, to change mindsets and understanding on complexities around this from an older generation. Not to shame them, but almost to say, like, I get that if it was hard, if it's hard for me at 40, I can only imagine what it's like for you at 70. Right. Because I mean, 30 plus years more into my mindset on this.
• 20:53
  Speaker B: Yes.
• 20:54
  Speaker A: You know.
• 20:54
  Speaker B: Yes, yes. And so funny. I was on a panel last week. I was on a panel last week and it was an autistic adult was, was on. It was all me and a researcher and whatever. And he was telling a story about a certain interaction he had. And he talked about this person being like, well, they were of a different vintage. And I'm like, well, I will forever. I will forever talk about like generations in age in terms of vintage forever. Because I'm like, like that is. I'm a wine drinker. Like, this is perfect vintage. That is a different vintage.
• 21:33
  Speaker A: I love that. Oh my God. That might be. That's like a good title of a series. Like Different Vintages of Autism Moms. Well, you know, we were. Before we pressed her seriously because, well, before we go on because you know, there are the, the, the familial structure scaffolding around us includes mothers and parents and, and family members from different generations. So it does sort of fall into that bucket even from more than just that nuclear family or your child. I mean, there's so many generations and vintages that are part of this and that's like cacophony in it of itself. You know, I remember before my grandfather passed at like 90 something years old, you know, he would say, how did this happen? How did this, Sarah? How did this happen? And I remember thinking that that is the only phrase that he had the ability to conjure up. He didn't really mean it like that. He didn't really choose to have that expression on his face when he said it. But that was all he would always say to me. I just don't understand how that happened, Sarah. And I go, grandpa, I, I don't know either.
• 22:37
  Speaker B: Here we are. Yeah, yeah. It doesn't, it doesn't land very well for us when we are also in a hyper aroused traumatic stage and you're people are saying those things to you. And I'm like, yeah, I don't know. It's like taking. It's like taking a bullet. It's like, yeah, no, you are. And you're biting down.
• 22:56
  Speaker A: You're biting down. Or you're getting surgery without anesthesia, and you're. And you're biting down that, you know, bone.
• 23:01
  Speaker B: Yeah.
• 23:02
  Speaker A: Gene, what do you. Before we press record, we said. I said, you know, what is one thing that you really want to share? And I wanted to touch on this. What do you think the world really gets wrong? And what do you wish people better understood about mothers and caregivers raising children with autism?
• 23:19
  Speaker B: So, hold on. I actually had this scoped out, and I read it out loud yesterday to myself, and I'm like, take your time. Where did I put it?
• 23:32
  Speaker A: No, that's okay. You look for it, and I'll, you know, share some of the thoughts.
• 23:37
  Speaker B: This is it, right? It is. Here it is. Okay. So one of the biggest thing I think the world gets wrong is that disability is often left out of conversations about equity when it's actually the largest group that intersects with all of them. So all of marginalized, disenfranchised communities, disability is the largest group. So I struggle because you can't talk about race and gender and socioeconomic status and identity without also talking about disability. But the fact is, we do it all the time. There's movements that are built and then unintentionally exclude the very people that are navigating the most complex layers of needs. And that part of the capacity, families like mine and yours are often in survival mode. And when you're fighting systems just to get basic support, basic needs like insurance, school services, safety in your own home, because, like, that's a thing, you don't always have the time and energy to show up in the broader advocacy spaces. So therefore, we get left out because we don't matter. But because the system already takes everything we have to just stay afloat, people don't realize that. And. And so often it happens. It happens in other groups, too. We. We don't realize that while we're trying to fight for inclusion, we're also excluding other people that intersect. And the beautiful thing, I think, about the disability group is that every disenfranchised community intersects with that because disability does not discriminate. I feel like that is, like, if I could get everybody's, like, awareness up here about that, we could literally change the world. Like, it would change everything. It would make the whole world better.
• 25:21
  Speaker A: It touches every marginalized group.
• 25:25
  Speaker B: It's sort of
• 25:29
  Speaker A: every discriminated. Yeah. When it. When it includes every discriminated population by. By default, by. By just being how it is, it ends up being like the thread, like the Kintsugi. Like that. Putting it back together like it's the one. It's the part that actually pulls it in to being what should be seen as the best example for why equity needs to happen from this exact group. I've never thought about it that way. That is. That is powerful.
• 25:59
  Speaker B: Gene, I love that you just brought up Kintsugi, because I love kintsugi. I love Kintsugi, and I.
• 26:05
  Speaker A: It's one of the.
• 26:06
  Speaker B: It's very therapeutic. So if there's anything that's ever broken in your house, I recommend learning that process and figuring you will be so pleased with yourself. And it's a very good practice. It's so therapeutic.
• 26:21
  Speaker A: Literal, figurative. You know, I share with you about my own home going through some construction now by. From a water damage. And, you know, at the end of the day, it really does make me sit deeply in the idea of Kintsugi, because there's these things that happen in life that happen structurally, that happen emotionally, and it's the. It's one of the things that I'm so glad that I've thought about so much that now it's a default mode of how I think about things, which is, like anything, right? You just. You start to see it enough, you actually believe it. And I do.
• 26:53
  Speaker B: Yeah. I remember waking up. I've had my house flooded before, and it was because of my child backing up the toilet, and I woke up to my seat sinking into water, and I was like, oh, my God. Yeah. Yeah. Oh, yeah. This was. This was months of repair. And we're going to talk about the expenses. And it's very cute when it's like, well, we have all these nice systems in place for us to survive, and. And then something like that happens, and it's like, well, that is all out the door.
• 27:26
  Speaker A: You're like, so the thing I have going for me, I have a pulse. I'm always like, what is the. What are the things that I can count on? I'm like, so I. Okay, I'm alive.
• 27:34
  Speaker B: Mm.
• 27:35
  Speaker A: All right. Well, Jean, this was. These are just. Every part of this conversation is just so powerful. And like I said at the beginning, I believe so deeply that every conversation, every testimony, every lived experience that can be shared as beautifully as you just did with. With your own life and being the mother to Rory helps, and it expands and it has a ripple effect and a butterfly effect in every which way. And I am so thankful for your willingness to share and how you do your life as a way to give. To give peace to others that are along the journey. Before we sign off, what is one thing that you would tell a mother who has a newly diagnosed child?
• 28:11
  Speaker B: The most common thing, and I feel, and it sometimes feels like cliche, is that you're not. That you're not alone, obviously, for first, for starters, but that this life did not become easier. But it does become clear. And in that clarity, I have found a way to stand in it with honesty and love and without it needing to be anything else other than what it is like, you will arrive to that point and even in the moments of discontent and crisis and struggle, you will have this. You can have that kind of feeling that's almost like this wholeness that can happen, but you're not. You don't feel whole in the beginning. And it's gonna feel like you're literally walking around just bleeding all over the place. But you can't say that you are. And you gotta, like, keep going. You know, just. I used to say that being, getting diagnosed is like being sent out into the rapids without an or. You're on a raft and you have like open bullet wounds all over you, and you're just like, come on, kids, we're going to be. It's going to be okay. You know, like.
• 29:24
  Speaker A: Yep.
• 29:25
  Speaker B: And that's what it is. And it's like we. These are these soft instructions that we have, like, whatever this means that we're supposed to do with all the cocktail therapies and like, this is going to be some magical solution. We're just like, I have absolutely no idea how this is going to end up, but we're here.
• 29:42
  Speaker A: Yeah. And I think that the survival angle of it from every other mother that's. That I've spoken to, that is, you know, numbers of years in on this journey can say the exact same thing. And I'm so glad you illuminated that because they aren't none of. None of the women and mothers that are earlier on in beginning this journey. They are not alone. And that there is sisterhood and community that can be found in the bleeding parts of all of it, and especially at the beginning and to reach out and find those people, because it will actually plug up some of those holes and it won't fix it, but it will be a very amazing balm for healing and progression of being conscious to this life. Jean, thank you so much for your time here today on inch zones and for the work that you do with the other moms on Moms Talk Autism. You are a gift to this community, and I am so appreciative, and I'm honored to stand by you as one of your fellow moms. And.
• 30:36
  Speaker B: Yes, well, thank you. Thank you. I'm glad to have you as a fellow mom.
• 30:41
  Speaker A: All right, everyone. Well, thank you for listening. And until next time, here on the Inchstones podcast,