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The Power of Online Support for Autism Caregiver Communities · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi everyone. Welcome back to another episode of the Inchtones podcast. When I started this in January, I had someone just in the community of my town say, gosh, do you think you'll ever have enough episodes, like, how do you meet people to do all this? How would you ever get to more than 25, 30 episodes? And I'm proud to announce that episode 40 is with my two fellow autism mom friends that I met, Instagram. Kathy and Erica both have vulnerably shared their story of their own children with profound autism. The twists, curveballs and highest of highs, lowest of lows in parallel fashion to me, but in their own specific, unique way. And the support that we started to realize that we all were finding within our own followers and communities landed us here today. So Kathy and Erica, thank you for being here.
• 0:56
  Speaker B: Thank you for having us, Sarah.
• 0:57
  Speaker C: Absolutely. So excited.
• 0:59
  Speaker A: And Kathy, I must mention you are also a licensed professional counselor and therapist too. So this plays in right to my wheelhouse because as someone who uses BetterHelp, not sponsored by them, but I am deeply therapized. I believe social media is positive for this niche group that we fall in profound autism Moms. Could you guys talk to me more about that and what your thoughts are on it?
• 1:20
  Speaker C: Yeah. Erica, do you want to start?
• 1:22
  Speaker B: Do you want me to start?
• 1:23
  Speaker C: You decide, you decide.
• 1:26
  Speaker B: Okay. So yeah, when, when I had Lev, a lot of my friends were having babies at the same time. And as he was getting bigger, my motherhood journey looked a lot different than my friends. And at first I thought maybe this is just really hard, you know, like he's just, maybe he's just like a little bit of a harder baby, you know. And you read everything on Google, you go down the Google rabbit holes and everything reassures you that every child is different. And it's true. Right. And I was a first time mom and it was during the pandemic, so I mean, there was just all these factors out there. And then, you know, with every pediatrician appointment, it became a little bit more obvious, a little clearer what was going on. And it was isolating in the sense that I didn't feel like I had other moms I that knew what I, what I was going through when they.
• 2:11
  Speaker A: Were that long, let alone the village of your moms that were also having kids too. They didn't even know cause they weren't seeing you.
• 2:16
  Speaker B: Right, right. We weren't, we weren't around each other a lot. And when you try to explain to someone, they're not pointing, they're not answering to their Name. It's. People don't understand. They don't understand. What do you mean? And like, isn't there something you can do? Like, you can teach that skill? Right. You know? And I've been met with so much love from people who don't have children who are neurodivergent. I have family and very loving friends. But it was isolating. And I went to social media and I started to follow some moms who trailblazed this, you know.
• 2:45
  Speaker A: Yeah. Here were some of the first that you followed because I'd love for us to all share.
• 2:48
  Speaker B: Okay. No, no. Matt and I came together from both sharing, like, because we were sharing is how we came together. I actually, in the beginning was not ready to, like, go down the, you know, autism, mom, social media. Like, I. I just wasn't sure that it makes it very, very real. And I think I was afraid of what I, What I would see because every child is so different. And that can be a little bit scary. Is getting a glimpse into other people's lives and not knowing, is this what Lev's future looks like? Or it can be a really hopeful place to be. Like, wow, look at them, you know, and thriving or coming out the other side, joyful. I followed Kate Swenson from Find Cooper's Voice, and that was because of my mom. My mom, actually. Yes. She. She had started following before autism ever entered our world.
• 3:39
  Speaker A: Yeah, same. I saw the viral video, too.
• 3:41
  Speaker B: Yeah. You know, and I don't even know if I've ever seen it, to be honest. I don't think I've seen the viral video.
• 3:46
  Speaker C: My mom, or she's in the car.
• 3:47
  Speaker B: Upset in the car.
• 3:49
  Speaker A: I think she's like, going to work or coming back from a work something and talking about. I mean, she, she. She bears all. And it's. It's beautiful.
• 3:55
  Speaker C: It's.
• 3:55
  Speaker A: It's. Honestly, it's heartbreakingly beautiful.
• 3:57
  Speaker B: So my mom, when. When we started noticing autistic traits in love and we were pretty sure we were going to get a diagnosis, she was like, you need to follow Kate. And so I went to that page and started just kind of exploring and feeling like, okay, so I'm definitely not alone. There's. There's this whole community out there. And then the more I followed her and I started to get more on Instagram, and my mom insisted that I go to Kate Swenson's caregiver retreat.
• 4:20
  Speaker A: Amazing.
• 4:22
  Speaker B: Because it happened to be in South Hill, Virginia, and I'm in Virginia, so it was only a few hours from us, and she Was like, I'm going to go with you, and you're going to go to the retreat, and I'm going to keep the baby.
• 4:30
  Speaker A: I'm interviewing your mom next. Okay. I'm interviewing your mom. Good.
• 4:34
  Speaker C: I'm not kidding you.
• 4:35
  Speaker A: The next episode does Erica and Erica's mom.
• 4:37
  Speaker B: Yeah, Mom's amazing. She. She's definitely, like. When I say I have felt isolated, it's not because of my own family or my own circle of support. I'm very lucky. It was more a needing that camaraderie with other autism moms. So, yeah, I went to the retreat, and that is where I met people like Tara Reynolds with Peace, Love Autism, and Lauren Flack with Channing's Joy and Tiara Cariello. So amazing moms who have trailblazed, like, they've did this before me and has been inspiring. And so that was my start. And then the more I followed those pages, I got braver and braver and felt like, I'm gonna share my story. And it's therapeutic and it's. The connection piece is worth so much more than, like, any troll, like, can. You know what I mean? Like, you get the trolls, but, like, the connection. It know how to word it. Like, it.
• 5:26
  Speaker C: It just, like, outweighs it, right?
• 5:27
  Speaker B: Like, yes, that's what I'm looking for. It outweighs. It never gotten, like, there's so many connections.
• 5:34
  Speaker A: Yeah. I think I always say, like, the troll comments, I always go, if you do not have skin in the exact game that I'm playing, your comment is so obsolete and is so static to me that it's just like, cool. The good news is I don't get to wake up as you in the morning.
• 5:48
  Speaker C: You know, it's just that, you know what Brene Brown often references. Right. The man in the arena.
• 5:54
  Speaker A: Man in the arena.
• 5:55
  Speaker C: There's going to be critics no matter what we do, you know, and so that's. That's sort of a life philosophy that I feel like I totally go often, especially kind of trying to grow a community on social media, because, you know, when you post something, you have no idea where it's going to land. You have no idea.
• 6:15
  Speaker A: We have no idea. I don't. There's no code. Right.
• 6:18
  Speaker C: Absolutely.
• 6:18
  Speaker A: Well, then how did you land? What was your. What was the inflection point for you realizing that this was a place of love, acceptance, and. Wow, social media has such a silver lining of good.
• 6:28
  Speaker C: You know, I am 42 as well, and I feel like, you know, I. I didn't grow up with social media, it wasn't something, you know, just, you know, I, my husband and I joke often, like we met sort of like when Facebook, you could only get Facebook if you were like a college student. It was like cool thing, you know. But social media has never really played a big part of my life. But about a year and a half ago I wondered, I wondered like what would happen, what would happen if I started to share a little bit more of our story. And it is still something that I'm trying to kind of figure out. And there are so many pieces to this, right? Trying to honor like Jacob's dignity. He's our non speaking son with autism, high support needs trying, you know, how much of, how much am I allowed to share, you know, that doesn't sort of like, you know, upset others like in my world that are also impacted, you know, we're a family, we're all connected. It's a system. So still kind of trying to figure a lot of that piece out. But what I knew I wanted to start talk about specifically on my Instagram was like the mothering part because I'm the mom, right? In this, right? Like I'm not talking about the dad side, I'm not talking about the side, I'm not talking on behalf of Jacob, you know, I'm talking about what is it like to be a mom. And I have a very different perspective than Erica in that. Jacob is our youngest, right. So I've had two othering journeys that have looked very differently. And when we welcomed Jacob into our family, I just assumed that it was going to be just like big brother and big sister. And even when we got the diagnosis, I was stubborn. I was like, you know what? Autism is not going to come in here and change my world. You know, we have this, we have our community, we have our friends active in our neighborhoods. You know, like autism is not going to win. And I, I, I almost refused to find other like friends. I was like, I already have my friends.
• 8:15
  Speaker A: Like I'm not, I was very similar. Yeah.
• 8:18
  Speaker C: And so I, I, I kind of didn't know. And there was something about a year and a half ago, March of 2023, where I guess March of 2024, where I just started to wonder, you know, I think I had surrendered to the idea that parenting Jacob was going to be different. Maybe I could have a different perspective, right. That it wasn't about just loss, that it could also be about gain. And so what do I have to gain from this experience? What can all of us as a family have to gain if we lean into this a little bit more. And so I started kind of sharing on Instagram, and I was trying to be really intentional with connecting with other moms, and I. I must have seen a reel that Erica had posted about Lev and I. I feel like we just kind of started following each other, and then we just started sending kind of messages back and forth, you know, really sparingly in the beginning.
• 9:16
  Speaker A: And.
• 9:17
  Speaker C: And I don't know, Erica, like, when do you think it shifted for us?
• 9:20
  Speaker B: Like, you posting something about an autism mom meetup. You had, like, made a flyer or something, maybe? I saw it on your stories.
• 9:27
  Speaker C: Yeah.
• 9:28
  Speaker B: And even though we had chatted a little bit here and there before that, I reached out to you, just kind of asking how you were coordinating that. Like, what was your turnout? Like, just curiosity. I had been to a couple locally here, but I didn't host any. And I was just kind of interested in how she did that and what that looked like for her. And then we just kind of started sending messages back and forth, I think, starting there. Um, and you shared your experience with going. And, like, I think one person showed up. So I was like, okay, so that's normal. Like, you know, it's not like you. Because I've seen. I've seen other accounts where, like, they do a meetup, and there's a mom who. I mean, she has to limit it. Like, she out in California, you know, she in a bigger city. You know, like, there's only 20 slots available or something, because it's just too big, you know, And I'm like, I don't. I don't think I have that problem maybe one day. But I wanted to know how that was going for another autism mom, you know, navigating, meeting up with other autism moms in person. And it's just something that I think was an interest for me and Kat right from the beginning, and I think our friendship has grown from there with that same thing in mind. Like, she and I still are constantly talking about how can we get moms together, how can we support the autism community? What are we. What do we want to do to give back to the autism community and the caregivers specifically.
• 10:44
  Speaker C: Totally.
• 10:45
  Speaker B: So that's been a lot of conversations that Kat and I have.
• 10:48
  Speaker A: I think that the idea of the. We never needed community more. Right. So. And then we. And then utilizing the fact that we're in this global village and we have access to social media, when you're conscious from a place of deep knowing, like, I really. So I'M so deeply aligned with, like, the intuition of mothers in situations like us. I really believe, and I'm starting to think more and more that like evolutionary biology, primal wiring, like mother's intuition, is actually real scientific data.
• 11:17
  Speaker C: Absolutely.
• 11:18
  Speaker A: And I think that in the last, probably since all of us have, even from before we had our children, before you had Lev, before you had Jacob, before I had Millie, that was something that was still around but wasn't really talked about. I didn't go into motherhood thinking about my primal motherhood intuition. And I think in sharing about how you both found each other and how others find women like us that do share, it does go down to this, like, deep knowledge and deep intuition and sort of this gut feeling of, I'm not alone, I can do this with someone. Someone else is mirroring back a similar experience. I was actually talking to someone who was doing her own research for a TED talk she gave. And she said, elephants, when a mother loses a child, loses a baby elephant or a baby elephant is injured, the other female elephants surround her until she's better. When I heard that, I mean, I get chills just saying it again. We're surrounding each other. Yeah.
• 12:11
  Speaker C: That's what it can be. Right? And I think, you know, you. You bring up the point of this global village. And I think that some of the more vulnerable conversations between Eric and I, and I'm not going to go into great detail, because her, you know, something that I've shared with her is like, I think there are conversations that we can have online, and then I think there are some conversations that just do better face to face. Right.
• 12:34
  Speaker A: Like, oh, I couldn't agree more.
• 12:36
  Speaker C: There are some, you know, some private conversations where we've had, where we're like, am I probably start the conversation with, am I allowed to say this? Am I allowed that? I actually don't love this aspect of it. Am I allowed to say I actually see it much differently even within this global community?
• 12:52
  Speaker A: Absolutely.
• 12:53
  Speaker C: So vast. Right? And that's kind of what Erica, I think, was referencing in the beginning is like, you know, this diagnosis of autism can look so differently. And it can. And, you know, like, I've got moms in my local area here in my backyard that are also raising kids with autism, but they're, like, in college. And I'm not sure that Jacob will ever be a college student. You know, they're, you know, their children are dating and getting married. I don't know. You know, and I never want to limit Jacob. I, I literally, when I say I don't know.
• 13:25
  Speaker A: I have no idea. In the best of ways. Right? Yeah.
• 13:28
  Speaker C: But also, like, you know, high support needs is. It's. It feels complicated, it feels heavy, it feels nuanced. Right. And so much of that is true, I think, just about the autism community in general. And so what I feel like has been the biggest benefit of being connected on social media is you kind of get an idea of, like, okay, who, who really understands this kind of parenting. Right. Even within this community that we all belong to.
• 13:53
  Speaker B: And it's.
• 13:54
  Speaker C: It can still be so different.
• 13:55
  Speaker A: Listen, the words of, like, the two c words that have popped up for me all year, like curiosity and complexity. Right. Staying curious to another situation with the exact same quote, unquote label or child with autism is never going to again go back to mothers. I will never be able to speak about the best way to parent and mother Jacob than you will, Kat.
• 14:15
  Speaker B: Sure.
• 14:15
  Speaker A: And same with love for you, Erica. Like, but what I can do in this community of deep support in, like, a very niche way of finding those people is saying, girl, I see you. I mean, yesterday I took the kids to the city and I mean, my son Mac was so happy at the splash pad. And I always put him in neon when we're in the city because I have to see him. You know, I make sure I. I don't lose him. And I lost it. I started bawling because he pummeled into some kids that were honestly his same age. It wasn't even like they were smaller. But I just realized over and over again that the grief and the. And the not. Not isolating, getting out there, coming back, realizing the support needs of mine, sharing about it online, having someone go, God, I did that last weekend, too.
• 14:58
  Speaker C: Yeah.
• 14:58
  Speaker A: Like, it creates this, like, beautifully glistening protective balm of moms. And I will support and, like, fight to the death for, like, these communities on social media. I really will. Because I think it's allowing people to keep on keeping on and there's no alternative.
• 15:13
  Speaker B: Yeah. And one of the reasons that I started sharing was for others to feel seen and validated that these feelings are real. And something Kat and I talk about a lot is it's not just autism. It's autism and these other things. And it's just. That's been really important as, like, a theme for me and for Kat, too. I think sharing, like, you can feel two things at once. You can be really, really, really heartbroken that your child cannot with you. They are in pain and they can't tell you what hurts. That is heartbreaking. Heartbreaking and it is not ableist.
• 15:52
  Speaker A: No.
• 15:52
  Speaker B: You say this breaks my heart. It is a loving parent. A loving parent. No parent is like, I want my child to struggle more.
• 16:03
  Speaker A: Right.
• 16:04
  Speaker B: That sounds like a great idea. No, but I can say that and also say I do not wish to change my child's neurotype.
• 16:12
  Speaker A: Correct.
• 16:13
  Speaker B: I can think autism is beautiful. And the way Lev's mind works and Axl too, I can think that that's beautiful and fully embrace them for who they are and be heartbroken about some things.
• 16:26
  Speaker A: I mean, I couldn't agree more.
• 16:28
  Speaker B: Those are all true. And I felt like, I felt like that's where my voice was needed on social media because I saw some accounts being able to, to do that. But I have felt a lot on social media, like there's a lot of you're one way or the other. It's like. And you'll see it around, you know, in April with Autism Awareness Month, I see a lot of the can we stop fighting? I put a post out about it. You know, like, you can think that autism is a superpower or you can think that it is a disability. Like we're all in this together. But what if it's both? And why do you have to choose? And I get really tired of that in our community where it's like, if you're not this full blown, like we see autism as this great superpower, beautiful thing, then you are ableist and you want to cure your child of their autism. Or if you talk about wanting to support your child and find ways to reduce their struggles and to help them get over some of these things or get through some of these things, then you don't embrace them? And I'm just, I'm really tired of it.
• 17:28
  Speaker A: Do you think though that that that was a societal conditioning of the DSM opening up the category to create space for more milder forms of autism? Because I do believe that the most highest support needs children with classic autism that is diagnosed before three is not the same autism as the kid that goes to college and asks for a dimmer light lit dorm room. I personally do not see those the same. Now it's the same. It's going to have the same category. Their, their file is going to say F84 just like mine. And I would never say to the mom, because I don't believe this, that your struggle is less than mine, that your, that your mothering journey has been less of a struggle. Right. But I do think that, I do think that by not dividing those from a, from a medical point of view, it becomes erasure. I really believe that. I believe that we're. That we are erasing the most fragile autistic children. I really. That's my opinion on it. Cause it makes me feel. Feel like we have to go. Well, don't talk about that.
• 18:31
  Speaker C: Yeah.
• 18:32
  Speaker B: I think there needs to be more specifics like autism and apraxia. Like that needs to be more understood than when we use autism as this umbrella. Yes. These children can be com. I mean, so vastly different now. I can't say that children who are. Have more severe autistic traits before age 2 don't go on to do amazing things. I have heard plenty of stories from parents.
• 18:54
  Speaker A: Totally.
• 18:54
  Speaker B: I never would have thought like. And they tell you. And it sounds like Lev. It sounds like my kid. And they are in college and they're driving and they're playing soccer and I. We don't know. Like Kat said, there's no crystal ball. So I don't, I don't know that I can say it's all kids who have this profile from this age because it seems like it can change. I don't know. But I do agree as far as like the umbrella autism diagnosis without more understanding of like apraxia and dyspraxia and things like that. Like Kat and I talk about a lot autism. Yeah.
• 19:24
  Speaker A: He's like co. More. It's all. Yeah. It's like autism.
• 19:26
  Speaker B: And you have to understand that if they have these other things going on. I'm not even talking about autism anymore. Exactly. That's where I get exactly. Is like, I'm not trying to change the neurotype, but I want my kid to be able to self advocate.
• 19:40
  Speaker C: Yeah.
• 19:41
  Speaker B: And yeah. There's a difference.
• 19:43
  Speaker A: There is. But again, it also goes back to what you were saying before. I believe that all that the three of us model online, that we can hold space for the vastly different emotions that rise up in women because these are our kids.
• 19:56
  Speaker C: Kids. Yes.
• 19:57
  Speaker A: Like these are our children. And around April, it's like people you're to this or don't share that or it's all supposed to be. It's all we are the world neurodiversity. I love neurodiversity. I freaking love it. I think that the best companies that ever take off are because they embrace it. Right.
• 20:11
  Speaker C: One of the one of beliefs that I, when I started sharing about our personal experience raising a kid like Jacob was I just. I set out with this idea that I was just going to believe every moment.
• 20:24
  Speaker A: Yeah.
• 20:24
  Speaker C: That it irritated me. And honestly it sometimes offended me when people would question, like, you know, my words or my lived experience, you know, and I just set out that I would, you know, if. And I think about some of the moms that we follow, right? Where if Mercedes from Autism out loud says my daughter can't or can't. I believe her.
• 20:45
  Speaker A: You believe her? I believe moms. I do.
• 20:47
  Speaker C: Of Lauren Flock says Channing can't or can't. I believe her. And my job is not to offer a solution. My job is not to tell her that she's wrong and my job is not to try to sell her a supplement or a remedy or, you know, that's not my job. You know, my job is just to like, stand right there alongside her and witness.
• 21:09
  Speaker A: Yeah.
• 21:10
  Speaker C: You know, and say, like, I believe you. Like that sounds really hard. Sounds really amazing. Oh my gosh, that's so cool. Oh, man. I'm heartbroken too. Right? Like, that's it. I just believe the mom. And so I feel like, you know, sharing online has kind of brought about, you know, there are some people who don't believe what I say and it can be so irritating. And I think that's where we start to see some of the divide kind of within this community that I think overall my experience has been pretty positive, you know, but it also, that's kind of what you get to do with social media almost. You kind of get to curate a little bit of like who you're following and you know, like, you know, the algorithm starts doing its thing and so I start to kind of get, I think more like minded or similar kind of minded content being driven my way.
• 21:59
  Speaker A: Yeah, I think it was around the April that I went from always sharing the inch zones, always sharing the highlight. We are all maybe here and there, dappling in the Birthdays are hard, you know, milestone, typical milestones are hard. And in April this year is when I was like armor, like I was just like, it's off. Like, like throw it off. I am going to lose myself if I don't share the, the radical truth. And I think in general going back to like women and mothers, I don't think there's a mother that would listen to the three of us talk. If we never mentioned autism and just talked about moms supporting moms, they would be nodding their heads along because I think that we are wired to stand vigil and to say, you're not alone. And I love that. Kat. I, I believe you. I believe you.
• 22:42
  Speaker C: Yeah, absolutely. You know, and I think part of like the origin of, of Our story with autism was, you know, me and my husband walking into our son's pediatrician office saying, hey, we think some things are off, and her saying kind of, you know, that. That discounting or that dismissiveness of like, oh, well, you know, he's just so young. You know, kind of going back to what Erica was saying. Like, you know, every kid's on their own timeline, right? That, that dismissiveness, that discounting, you know, is sort of like woven into so many pieces of our story already, right? That the last thing I need is to be surrounded by moms, right? Or, you know, other women who are adding to that. Like, I already get enough of that, like, as an advocate, right? As a mom to a child who cannot yet speak or communicate on his own behalf really reliably. And so I think that's been the beautiful part about the ability to kind of get connection on social media is being connected to moms who also operate from that perspective. Right? Erica has never once said to me, man, I, you know, you just need to do this.
• 23:44
  Speaker A: Just, yeah, like, have you tried that?
• 23:46
  Speaker C: And he's, you know, you know, and I, I even posted about it in stories, you know, where I'm, like, I'm hesitant sometimes to share some of the things because I. In, you know, in the community that I, you know, on my Instagram page, sometimes I get overwhelmed with everybody's suggestions. And I do think most people are trying to operate from a place of, like, trying to help, right? Like, I think it's, like, it's hard. And this is going to be the therapist side of me. It is hard for people to make space for really big feelings, right? Like when I am sad or when I am struggling, like, people just want to come in and help. And I get that the intention is great, but the impact is not always the same, right? And so we have this distinction between intent and impact, where the impact of it is, like, I get overwhelmed, right?
• 24:30
  Speaker A: Well, let's just say our central nervous systems, I think, as moms, that we are the lives that we, the three of us do have in the varying capacities with children with autism. Then you add in the amount of information that we get to take in through media or any, any source of media or just, you know, sharing. I mean, our central nervous systems are fried and it takes a lot. And now, Kat, you talk a lot about this. Move your body. I do like, upside down headstand yoga, like, all day long, like at least twice a day. And I've got a sauna in my basement. And like, If I do not do those things, the healthy oxygenated blood is going to not be pumping and it's not going to be able to take in those maybe extra set of. Have you tried that gracefully and with kindness and reception to say they're just trying to help, right?
• 25:14
  Speaker C: Yeah. Yeah, absolutely.
• 25:16
  Speaker A: Where do you guys see the community online becoming what you hope it to be like? What is your hope for these communities? You know, what do you really see as like, gosh, I want that to happen for us.
• 25:29
  Speaker B: So where I think social media is really beautiful for this community is when you have people like the three of us who share online. I think it gives you a little glimpse into their lives and even more into like their values. What, what do, what do they hold important, their belief systems? I mean, I feel like that comes through in like your reels and your posts and your, and your personality and that's great. And you make connections through comments and following each other and that kind of thing. But for me, the really beautiful parts of this have been the, the DMs, the private connection, like Kat and I sending some days, what, 20 voice messages back and forth. That is really like in Sarah, you and I have had conversations that are private. Right. But we met on social media because we could see kind of like glimpses into each other's lives and personalities and.
• 26:22
  Speaker A: You start chatting behind trust that I felt that we were able to come to probably quicker than most as another random mom. Right, right.
• 26:31
  Speaker B: Because you've already kind of seen how they live a little bit. You watch each other's stories, you kind of see their day to day and you just get a feel for people. And for me, that happened with Kat pretty quickly in our friendship. I mean to a point where like when I was having a really, really rough week with Lev, like it was just meltdown after meltdown over his clothing all of a sudden and we didn't know what was going on. And like I couldn't, I mean, diapers, I couldn't get him dressed, I couldn't get him changed and just screaming, which we think was GI related again. But I mean like you said your nervous system is like this. And I was at a point of like five straight days of this and I was just like, oh my God, where I think I sent Kat maybe even a text, not a message. Like I think I just text her, like, this is really effing hard. Like this is, this is, this is hard. And I'm, I'm upset. And in her response wasn't, well, have you tried?
• 27:19
  Speaker A: Yeah, it Was maybe that's the title of this episode. Have you tried listening to the autism moms?
• 27:25
  Speaker B: She her response, I'm sorry. It is hard. It is hard. And then later she was like, can you get a glass of wine? And I was like, I already sent my husband to the store and, and one time. And I hope this is okay. Kat to share. Like, Kat and I were talking about the term like profound autism or high support needs. And Kat shared with me that sometimes she's not even sure if Jacob is considered. I know that because he can be not easy. But when you compare to some, some children who have bigger struggles, it seems like bigger meltdowns or like they don't have a loping as much as like I do with Leb.
• 28:00
  Speaker A: Yeah.
• 28:01
  Speaker B: And I, I asked Kat like, well, but can Jacob care for himself in any way, shape or form? And like if Jacob were to get lost, could he correct. Tell someone how to get home? Like, does he know his phone number? Like can he do the things that keep him alive? His age typically at this point could do Right. For safety and, and in the future, will he be able to do that or will you likely be caring for Jacob well into the future? Right. And I was like, you absolutely use the term high support needs. That is high support needs. And so just kind of that validation that comes with those private conversations. Like she's not going to ask me that online in a comment. Right. Like these are conversations we're having. But that's. I've made several connections like that. I think Kat has to. And I'm sure you have Sarah. Like those conversations, like that's where community is being built.
• 28:46
  Speaker A: Yeah. And I think it is. Again, I've always. One of the things that in like total retrospect that I've looked back about myself like literally as a little girl and I love one on one conversations. Like you two are the only exception that I'm going to make.
• 29:00
  Speaker B: I want some one on ones intimate.
• 29:02
  Speaker A: I want like small talk has given me the ick since day one of being Sarah. And even when I'm on a trip with my girlfriends, there's three of us named Sarah. So like it's really confusing. So I'm like other Sarah, come here. Can we go talk? I want that. I crave that. And I think that that's such a beautiful part of how the community does build in this really specific niche that we never in a million years thought 15 years ago any of us would be in. But it goes back to like what we innately know to be True that. Like when you see someone, hear someone, one on one, and they go, yep. God, girls, I'm thinking about you all day. How good does that feel? You feel like you can get through it. I want to shout from the rooftops that I believe it's the work that you guys are doing in sharing that whoever comes to know your orbit or to know or to ask you questions or to send you that DM or to make a comment and you say that, can say back to someone. That's hard. God, I experienced that yesterday. We had, you know, so and so this. This happened that again, you know, someone else has either gone through it, that we're not unique. I mean, listen, we're all the star of our own Broadway shows, whether those shows are literally on Broadway or at the crap theater in upstate New York. Right. We're still the star. And I think that when we can acknowledge someone else's front stage life and go, I've done that before. It really is. Yeah. Did your husband go to the wine store? Did he pick up that bottle, Freeze. You can just take a deep breath, you know, and it's validating.
• 30:23
  Speaker B: We got takeout. We had wine.
• 30:24
  Speaker A: Yeah.
• 30:25
  Speaker B: Nervous system calmed down.
• 30:27
  Speaker A: Yeah.
• 30:27
  Speaker B: You know, you get through it. But I just. I could have sent that message to anybody. Yeah, I probably would have gotten love back, but I needed to send it to somebody who's an autism mom. I needed to send it to the person who could go, yep, I know it's hard. It's really hard.
• 30:45
  Speaker A: And, you know, to. To think like you said, Kat, in college, I was this. Facebook was only for when we were, like, it was. We were in college. We got it. But, like, you know, that wasn't. My parents didn't have it. You know, Instagram and that, you know, Facebook and then the, The. The evolution of that, I mean, it did save me from spiraling in some capacity. I mean, I also had a really wicked postpartum experience with my. Even then that was also another reminder to me that, like, I'm not unique people survive this. If I can be. If I can witness and then be witnessed, for that is a luxury. It is such a luxury. And I hope that, you know that the women that. And specifically women and caregivers that follow any of us, because we do live busy, full lives. There are people that are in the middle of Kansas that might not have capacity to even go see a friend at church or just see a friend for coffee that, like, that is what this gives. And I, again, I just think it's such A luxury. And I know it's downplayed so much, it's given such a bad rep that, you know, I. Again, like, I love Erica. You posted something about loving the Crocs yesterday. And I was like, I'll never forget that. Like, it spawned in me. I didn't even. I don't even think I sent you a message about this, but it reminded me of an experience they had with Millie because Millie has these Sesame Street Crocs and gosh darn it, does that girl fricking find them every year. And now they don't make them anymore. And I have to go on Poshmark to find, like, the new ones. But, like, I forgot that, like, we did struggle two years ago with even putting on shoes. And now I'm like, mills, get your shoes. She always picks the damn Sesame Street Crocs. But it was. But that's the thing that you get to witness. And Kat, you know, with showing your self care and working out, moving your body, like, do that. But it's also a reminder that, like, it is a. It is. It's never the wrong choice. It is never the wrong choice to move your body.
• 32:33
  Speaker C: Absolutely.
• 32:34
  Speaker A: Yeah.
• 32:35
  Speaker C: We're in that. In our. Our by necessity. Right. Kind of. That self care needs to be a priority. And I. And to the mom who is like in the thick of it and doesn't have a community and maybe doesn't have a lot of support and is in, you know, maybe more.
• 32:52
  Speaker A: Yeah. Rural situation or something, you know, removed. Right.
• 32:55
  Speaker C: I am. I am very aware that the only. You know, at least my lived experiences. You know, I've got a husband who's at home with the kids. I've got a husband who also really supports the idea of, like, get, get out, go. Like, we've got this, you know? You know, so I told. It looks different, but I think just moving your body, it doesn't have to be a Pilates class. It doesn't have to be yoga. It doesn't have to be, you know, somewhere beautiful or somewhere expensive. Like, it could literally be like a walk in your neighborhood. It could be jumping jacks in your backyard. Like, it just moving your body. Yeah.
• 33:28
  Speaker A: Well, I adore you both. And I just. I love how again, we did not know each other years ago. I never. I didn't know what you were going through, Kat, when. When Jacob was diagnosed. Erica, I didn't know you when you were having all the. All these. Gosh, you had a lot of kids really quickly. I love it.
• 33:43
  Speaker B: I was like, pregnant or breastfeeding for like five straight years.
• 33:48
  Speaker A: Like, yeah, like, I'll be honest stuff. What I love most about both of you is that you scream real. I mean, scream in the best way, like who you are, how your families live, your ups, your downs, the words that you choose, the content that you create. It is so freeing, it is so fresh, it is so honest. And that's all I want to connect with online, with fellow autism parents. Whether it's low support needs, high support needs, profiled versions, whatever it is, tell the truth and be honest about what works for you, because you will be the guidebook. And I believe that each of us, in our own way, get to be the guidebook for. Even if it's one other person.
• 34:29
  Speaker B: And I think that's what drew us to each other, all three of us. It's just the realness. That's what I mean by, like, you get to see someone, their content kind of lets you know who they are a little bit. And I think it was that realness. I mean, I know it was for sure. Reading all of your writing, Sarah, and watching Kat in her reels, even just the silly stuff, even when. Yes, I like that, you know, because I could tell she was being like exactly who she is and that it is refreshing to like, have that realness. And.
• 34:59
  Speaker A: And like you said, being able to laugh, like, too. Like, I. One of my favorite quotes ever doesn't even come from autism or mental health or anything. And that stop me if, like, I sound like a basketball mom here, but I am like the Jim Valvano, like, quote before he passed away of cancer. And it was like your life. If you can laugh, cry, and think every day, you will have the best life. That's it. And I think that in finding each other online, in supporting the communities of women and caregivers that do get to see what we share, if they can laugh and cry and think, I think we've done. I think we are doing the good work and we're our purpose. And I know that you guys are both doing that, and I hope I'm doing the same. Thank you for carving out the very minimal time that we all have to give. That is not, you know, this is the one day I have, but I have a broken door I got to go fix because it Mac finally kicked it in. Okay. Yeah, it's okay. It's all right. 100 year old house, man. That's what I get.
• 35:55
  Speaker C: Yeah, I understand.
• 35:56
  Speaker A: Someone else would be like, he did what? And you guys are like, you see.
• 36:00
  Speaker B: How neither one of us, you're like.
• 36:01
  Speaker C: That dress like, oh, yeah, in there.
• 36:03
  Speaker B: That sounds about right.
• 36:04
  Speaker A: We flex muscles that we never thought possible. And absolutely, I am wiser and a better person to know that you're both out there doing your work. And I thank you so very much.
• 36:14
  Speaker C: Thank you.
• 36:15
  Speaker B: Thank you, Sarah, for having us.
• 36:16
  Speaker A: You're so welcome. And until next time on the Instance podcast.