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The Power of Vulnerability: Autism, Motherhood, and Connection with Autism Mom, Jess Caraway · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Today on Inchdones, I'm joined by Jess Caraway, and she is the creator of if you know one project. We stumbled upon each other on Instagram, and as I always say, there is a lifeline of special needs parents and mothers and caregivers that are navigating autism with grace and with honesty and humor. And it is so nice to have Jess join us here today and to share a little bit more about her platform and where she. Where she began to share so vulnerably and beautifully about her life. Jess, thanks for being here today.
• 0:39
  Speaker B: Super excited to be here. I can't wait to chat with you. I am a big admirer of your podcast and I love the variety of guests that you have.
• 0:49
  Speaker A: Thank you.
• 0:50
  Speaker B: I think that connecting with you is. You are such a great example of why I wanted to share on an Instagram platform and why I wanted to kind of open up about our experience with autism and what it looks like. You and I share a real parallel to ages of kids and older sibling. That's neurotypical. Younger sibling and siblings for you. And so it's just really interesting to find someone who is in this space sharing at this specific time. And I think it is such a great example of. I hope I actually, I know I'm not even going to say I hope that you'll take this, because I know you will take this in the way I intend it, because I really do believe this is what you want your writing to do. But your writing challenges me. Your account challenges me. You know, sometimes I read the things that you share and I'm like, yes, I'm right there with you. We are feeling the same thing. And other times I read what you share and I'm like, I'm going to need a minute to process that. I'm going to need a minute to.
• 1:56
  Speaker A: Say, I'm a lot, Jess. Are you saying I'm a lot?
• 1:59
  Speaker B: I'm saying it's like, it's. It's. I need that challenge. And what a great example of this space and the different moms that are in it. And I think, you know, I promise you, I won't get into the nitty gritty, but there's no doubt there's some controversy in our community at the moment, and it's very reactive and very. You know, in September, when the controversy really kind of, there was a fire lit under it. There were a few. Few moms that I had connected with, I thought in a way that was really meaningful. And those connections they decided to remove, and it really has taken me a long time to process this because I'm like, man, I want to make sure. Because, like all honesty, I am a very opinionated, reactive, passionate person. And it really just made me, like, screech the brakes and be like, hey, you have. You have to listen and value perspectives. Cannot do that because I don't want to cut out like this. That's what we preach, right? We're always like, different perspectives and acceptance and different experiences, and that's what we learn from. And so your account, specifically your podcast guests, the conversations you're having, have challenged me. And I'm not, you know, I'm. I'm not going to lie and say it's all. I read your stuff and it's all rainbow, fuzzy, you know, feeling. Sometimes it hits me and I'm just like, that's okay. It's okay to sit in that. It's okay to sit in.
• 3:30
  Speaker A: That's so interesting. Well, first of all, I was not anticipating you saying all those kind words, and I'm like, really? Just like, thank you. I'm trying to get better at accepting compliments. And really, I really, really, really. That means a lot. I was not expecting you to say that. And I just, I'm very deeply thankful for that because sometimes, you know, when we share online, we never know how it's landing, even with the. Our compadres that are in similar life. And I think what I hear you say in all of that, and at the end of the day, that last sentence is, and I've had to learn this lesson in different ways. It is not unsafe to feel discomfort.
• 4:15
  Speaker A: That's like the one thing that keeps rising for me as I sometimes put out more, you know, when, when, when. When the world has autism, you know, center stage. And, And I get. We all get to, you know, share what our thoughts are. I'm realizing more and more that it's okay to be uncomfortable, right? It's not. That's still safe. We just have gotten so used to this desire that everything has to feel, like, warm and fuzzy and that friction points are. Are where we set a boundary. Like, oh, that's like, no, no, I'm gonna put a boundary on that. I mean, I've had a lot of. Of people say some really, really nasty things, indirect, you know, in dms and saying, how dare you? And what are you doing? And I think, gosh, like, I guess I hit an edge.
• 5:10
  Speaker A: That doesn't feel unsafe, though, to me. And I appreciate you saying that because I think that that's something that you and I. In this world of autism parenting, whether we wanted to or not, when April hit and press conferences started becoming a thing for our population of children, everyone's like, well, here we go. Buckle up, buttercup. Right, right, right.
• 5:31
  Speaker B: And it's interesting because, you know, I will never be on the bandwagon that social media is completely, you know, the worst thing ever and evil. I think it's.
• 5:41
  Speaker A: Agreed.
• 5:42
  Speaker B: Agreed. Such a good tool. I think that we have to utilize it in a way that serves us and doesn't drain us. Um.
• 5:50
  Speaker B: But. But there's recognition of, like, you know, there is an algorithm, and there is a. When you are. When you are being fed all the things that you want to be fed. Your narrative, your thoughts. And so I try, even though, like, I'm not. You know, I say this with all, like, exposure. Like, there are times where, like, I will read things or I'll. I'll see things, and I'm just like, why are you platforming that person? Why are you having this conversation? Why are you saying this stuff? And, you know, I've really had to allow myself to just process through it and say, I don't want to. I connected with a mom recently who.
• 6:30
  Speaker B: Explained to me.
• 6:34
  Speaker B: In a very specific way, here is my child's story. Here's where autism came into our journey. Here's why. And it was totally different than my story and Eliza's story. But. But the way that she came into the conversation to connect with me, and specifically, she was reaching out to say, you know, what you share has. Has helped me with this. And then she shares her story, and it's like, in the back of my mind, I'm like, our stories are so different, though. And it's like, wait. But, like, we're. You know, we're on that same path. We're on that same journey. I don't need my story to be the same as anybody else's. Right?
• 7:09
  Speaker A: Yeah. And, like, the. The. The curation of it, we've somehow overcorrected in thinking, okay, well, I found my people. I found the other moms and caregivers that have children like mine. Now we're just gonna hold hands, and we're gonna sing we are the world, and we're gonna march on. No, that doesn't happen.
• 7:23
  Speaker B: Right?
• 7:24
  Speaker A: I mean, you and I, on paper, probably, aside from our daughters, we just said before, I'm like, you're in rural Idaho, like, central New Jersey, man. I mean, I can send you some really damn good bagels, but you have a lot better food probably than I Have, you know, wholesome, fresh, good stuff. But like, I, I don't know where we went wrong. Or maybe it's just an overcorrection of like, to the point about. It's. They're not gonna look the same, they're gonna have a lot of similarities. And I think that's the, like the. My partner's favorite word in his vernacular is orientation. Like, to broaden our orientation to the experiences of others in order to adapt quicker and faster to an ever changing environment. Right, right.
• 8:06
  Speaker B: And I think people get hung up on that. Like, this is my story, this is my experience, these are my beliefs and convictions. And I hold this so strongly in one hand. But in the other hand, you can, you can still leave room for open mindedness, Open being, open minded being accepting of listening. That does not mean that you've wavered on your thoughts or your opinions. It means that you can hold both. You know, you can balance both of those and understand that perspectives are going to be different. And I think that that's the part that I'm really trying to honor because you know what I really, what I know we, you know, I've connected on is appreciating our children's love for specific things. One of my favorite things in the world is watching other moms love and know their autistic kids well because it boosts my, you know, my intention to do that with my daughter.
• 9:08
  Speaker A: Yes.
• 9:08
  Speaker B: And it is like you're recognizing the.
• 9:11
  Speaker A: Maternal instinct in someone else and then going, gosh, I do that too.
• 9:16
  Speaker B: Right? Yeah.
• 9:17
  Speaker A: And you're in your. Such a gift. It's such a gift. Yes.
• 9:20
  Speaker B: And it gives you permission.
• 9:22
  Speaker A: Yes.
• 9:24
  Speaker B: So, so, so these are the.
• 9:27
  Speaker B: You know, these are the moments of connection that I remind myself when I.
• 9:33
  Speaker B: Strongly disagree with someone, when I am struggling to see someone else's perspective, I have to shrink it back down to a core, you know, value like that, where I know, I know that even if there is a mom who has an autistic child that they believe completely different than me, they view the spectrum different, they view labels different, they view whatever, whatever it looks like, healthcare, all the choices, but I know they want their child to be loved and seen. And I see that time and time again. So I don't say that as like just a platitude to throw out there. I see it. I see these people that I'm like, wow, I really disagree with them. But instead of saying block and delete, I'm trying to dig into that personal connection, you know, and it's interesting because I think, gosh, it probably was like two years ago. I remember seeing a mom share about her son on Christmas morning and he opened up his present and it was a wet floor sign and he grabbed that sign and went busting up the stairs. I mean, it was, he was so happy, so excited. And I just thought, I mean, I probably watched that reel a million times. I saved it, I sent it to everyone I know. Like, can you believe, you know, I ran to my parents house to show like, because it's like. And I don't know what her, you know, I don't know what her opinions are on this. I don't know what she thinks about autism and what she wants for her to. I have no idea. And I don't need to know that to appreciate that that child felt so loved and seen and known and that parents gave that to them and then gave the gift to all of us to be able to revel in that and be like, oh yeah, we can, we can see our child for exactly who they are and their interests and, and it's a, it's not weird.
• 11:29
  Speaker A: It's not, you know, that's the humanity. That's like the mother. That's like this collective motherhood, like instinctual validation, like, it's like, it's like you. We got validated by witnessing another moment who has an autistic child, regardless of how she parents on the daily or what her choices are, how she feeds and keeps him hydrated and gets him out in the world, stripped down of all of that she found and gave to her child. That, that the, the, the moment of feeling so seen and heard and what their love and excitement and joy was, you know, that, that knowing that there, that is like, that is a. How, how other mothers lead that have similar children like us. That does feel like a tribal thing that's like, yes, yes. Like that little boy, like you want to go run and hug them and just give them a big smooch, right?
• 12:26
  Speaker B: Yeah. And you, and you see that connected point where you're like, we're all doing, you know, we're all trying, we're all trying to do the best for our kids. We're all trying to acknowledge their needs and their, you know, interests and it's just, it's, it's in sharing and seeing other people share those stories and those little tidbits of their day, moments of joy for their child, whatever that looks like, that just fuels my desire to not dig my heels in to where I can't ever pick my feet back up and move again because it just feels, you know, counterintuitive. Right, right.
• 13:04
  Speaker A: There's a humanity behind every one of us that is, you know, obviously we're, we're in a small subset of women and mothers and caregivers who are proactively sharing. Right. In the capacity we do. And so I think, okay, then there's tens of thousands of others that are taking in and their personality is not as forward facing. That's just, that's the nature of different individuals and personalities. And I wonder if that we have gotten so far behind the screens that I hope that this conversation serves as a reminder that those of autism mothers and caregivers that are doing it totally differently, we see them too. Like I, I, I think that the fullness of the life that I've lived up until this day to day and, and yours up into this day to day, I mean it would fill novels and we could never really understand the why behind, why each mother is making the decisions they are. We never really know. I remember having an experience with another mother of a non speaker and happened to be privy to something like sort of behind the scenes with her spouse.
• 14:12
  Speaker A: It really first it made me take pause, but it also made me realize that there's so much going on in the homes that we don't really know about. And I do think that if we assume the best intent for other mothers of children like, like ours, generally speaking, it will lead you to feeling more validated and whole in your own choices as well. Right?
• 14:36
  Speaker B: For sure. Yeah. Because yeah. And there you're just, you know, like you said, you just, you never know. I mean, how many lessons in autism parenting have. I know you'll be able to relate to this like have helped form my perspective of how I handle other things in life. So like my parenting style, everything. Right. Like you, and you look at that and just think how, how, you know, my, my son, it just turned 13. And I think I look at the way that I parent him because of the way that I have to show up for my autistic daughter and, and the perspective shift, the way that I see things that I would have probably never seen in him had I not been in tuned to that with my daughter. And that sounds so silly, but when you're in it, you know, you realize, oh, that's right. Like you're, you're looking for those, you know, communication cues that aren't necessarily speaking words to each other or you're looking for their interests. You're looking for, you know, the, the purposeful part of that, and, you know, this is. That's just the tiniest example. But like so many things in autism, parenting rolls over into other parts of your life and you're able to see that.
• 15:55
  Speaker A: And I say that. Appreciate it.
• 15:57
  Speaker B: Like, it.
• 15:58
  Speaker A: It flexed. It flexed a muscle in me that I didn't even realize I have, but that muscle's been flexed now over and over and over again. I've built this set of muscles that now I have this extra set of skills or just a way of seeing things for my typical child that I'm pretty sure if I did not have Millie and Mac, I would be doing right. You know, always talking about the little things and that. That bring joy for Millie and Mac are finding those and pointing them out, right. Actually saying like, oh my gosh, I really see you enjoying X. Well, my, My typical oldest came down to the kitchen some morning last week and she said, and again, it's hard to, like, I'm sure you feel this with your son. It's hard to not realize that you've affected them. And they say something, you're like, oh, it's working.
• 16:44
  Speaker B: Yeah.
• 16:45
  Speaker A: And she goes, mom, do you know what the best feeling in the world is? And I'm thinking the first sip of coffee in the morning.
• 16:55
  Speaker A: Like, before anyone comes down the stairs, before I hear your sister, like, nap, knocking on her door. And she goes, you know when you get up to go to the bathroom at 3am and then you fall back to sleep without waking up, she goes, that is like the best feeling in the whole world.
• 17:11
  Speaker B: I thought she was going to say.
• 17:12
  Speaker A: Like, scoring a three pointer at her basketball game last week, but I realized, but that's your point. Like, it spills over. It was like this spillover effect of not only just my parenting, but, like in her awareness to life too. And I just remember thinking, yes, like that time, it was like sometime last week, being like, you know what? You did it, Sarah. Like, give yourself a pat on the back. Like, whatever happens today, that just won.
• 17:38
  Speaker B: Right? Right. Yeah. They see you, you realize how much it flows into their daily life. And then, you know, in the same, it's such a mirror of when we share. That's exactly what's happening too. You know, the ripple effect of what we choose to put out with our community. But then it's the reciprocal response. Like, I. I don't even know how to word this, but. But so much of what I share isn't about what I've said. It's about the response to it and the community and connection in the Comments. You know, really it's that intersection of understanding, you know, how we view things, how we talk about celebrating small wins, how we talk about our child's interests. And you realize that those things trickle into, yes, your online space, but your personal space as well. Because you, like you said, you flex that muscle and you learn to talk about that stuff in your day to day. And I feel like that has really brought this level of connection that I didn't even know I needed. You know, we. When you're with Eliza, the thing I'm always telling people is, and I have sat in rooms with people where I have just felt like I'm begging them, just give her time, just give her 30. I used to say this and you know, we, I homeschool her now, but when I would sit in those IEP meetings, IEP meetings, I would practically beg and just say, just give her 30 seconds, just give her five seconds. Just get, I mean, I was just grasping at anything. And what I really wish I would have said because I don't think I, I was so desperate at the time to just really get my point across that I missed the mark of. I want her to be known. I want you to see her. Because when people see her and know her, they love her. They see her, they know her, they get her personality and it's so sweet. I have the perfect example of this and it just makes me like teary eyed thinking about it. But there's a local coffee shop that we go to and they just love Eliza. They always talk to her, they always ask what her interests are. They just, they're just, you know, at first I chalked it up to they're just good, you know, at customer service, they're good at, you know, interacting with you.
• 20:00
  Speaker B: But she always looks out the window. They have this little, these little spinny flower things in their garden and she's just like entranced by them. She loves them, they always regulate her. We can be in the line forever. And we showed up the other day and they had gotten her spinning flower. And you're just thinking these are people that, you know, in the big scheme of life don't have any reason to invest in knowing us like that. They have no, you know, and yet. Right. But they see her and they see her joy and they see her. And this is in the span of being in a coffee drive through. I mean, you're not talking about hours on end, you're not talking about a built connection, but those are the moments when I'm just like, it's Possible. It's possible for people to see your child and not have to beg for the 30 seconds and not have to, you know, feel like every time you see someone you have to talk about they can do this now they can do that. Look at all this progress. She can just be. And someone else sees that and it really, those type of connections have set the bar so high for me because.
• 21:16
  Speaker A: I know right when that happens, you just wish like, I want to invest in this company. I want to talk to your, your owners and founders. How do we disseminate what you were taught? And then you wonder, no, I also just want to meet your mom.
• 21:29
  Speaker B: Right, Right.
• 21:31
  Speaker A: Like I just want to meet who your mom is.
• 21:33
  Speaker B: You know what's so fascinating? This is a, this is, this is like their retirement, their, this coffee shop. So he was in construction. It's their, it's their local. It's just the best and it amazes me but at the same time it makes me realize that I, you know, it is possible and that, that connection, that understanding is the same that we're talking about with like our, with sharing in our accounts and connecting with other moms. And you know, I don't know what their political beliefs are at the coffee stand. I don't know what their, what they think about autism, but that it transcends all of that because they see her as a person and they want to celebrate her joy and they want to, to, you know, they want her to feel known and seen.
• 22:19
  Speaker A: Yeah, I think that, you know, again, I'm glad that I'm not surprised, but I'm glad that we share the idea that there is. I, I over overarchingly believe that it's more good than negative for the online space that I'm in, that, that we're in especially needs parents. I think that for the Most part like 98% is really community based. Really being so thankful that others that you get to peek into their world and see or get ideas or validate all these things. I think the speed sometime at which we live our lives because we're so online and we're so virtually based that it's nice to know that even in the speed with which you're going through our drive thru coffee line can feel as validating as it might have been for say decades ago, where you had to go to a space and it was actually like a physical third space and take time to get to know everyone. Maybe, maybe the byproduct of how fast paced our world is is that when it does happen quickly, it Feels as impactful. Like, that didn't need to be a 10 minute thing for you and Eliza. It was, it really does go to show that, like, it doesn't need to take up boatloads of time.
• 23:33
  Speaker B: Right.
• 23:34
  Speaker A: Someone else's humanity can literally just be like, hey, thank you so much for that, or like your child smiling, you know, it was so great to see them, you know, out and about. That's it.
• 23:43
  Speaker B: Yeah.
• 23:44
  Speaker A: Right. It doesn't have to be a huge, a huge thing. And maybe, maybe we can hang our hat on sometimes the speed of our society can work to the benefit of that and how it did, you know, for you guys, right?
• 23:55
  Speaker B: For sure. Yeah. And I think that's the same with, you know, you think about like sharing a reel on Instagram, that's what, 30 seconds, 60 seconds, you're talking about these things, tiny clips. But it's interesting how those can connect with someone. And, you know, and that's the, that is the power and the good that I see in social media and that connection. And I think so much of that is what you make of it. What are you putting into it, you know, what are you wanting to get out of it? Just being focused on that. And, but the, but the, you know, I can think of several. There was a reel that I did once about Eliza and her sensory needs and how much she needed these specifications, specific types of input and the way that that looked. And I shared these tiny, tiny little glimpses, you know, you're talking seconds of, here's what she was doing and here's, you know, here's the tool that she needed. And, and I thought that the comments were going to be like, like I didn't know that sensory equipment existed or, oh, you know, I was thinking of it more logistically and instead the comment section was filled with adults saying, I needed this validation when I was a kid. I needed someone to say this was okay and do and look at it and say, I wasn't being bad. I needed this input. And it just, it totally like, made me freeze because I thought here I was trying, you know, thinking, you know.
• 25:23
  Speaker A: I'm just one thing, and it expanded to the other. I love that.
• 25:26
  Speaker B: And it connected to that validation piece. And it was just so, so neat to see the humanity piece there, where you're just like, okay. And there were some, you know, people that were like, this healed a part of me as a child, knowing that there's a parent that's seen seeing their child's needs through that. And it's like, so then in Turn I, I get validated then and I'm like, wait, I was the one that was supposed to be, you know, putting out the, the content to help you.
• 25:53
  Speaker A: But it's such a luxury cycle. Yeah, I've been saying that over and over again. You know, I, you know, let's, let's call it like 1112 years ago. Never in a million years would have considered luxury or defining the genre of luxury as to what you just said. Yeah, I really believe that is a life luxury.
• 26:14
  Speaker B: Absolutely. Yeah.
• 26:16
  Speaker A: There is not a single dollar a month that you can pay for that feeling. You actually have no idea when it's going to hit you next.
• 26:23
  Speaker A: And that, and those things, you know, we, we live in a world where we're so plan based and routine based that when something like that happens, like that exact example with that one reel of yours, it is such a gift and it reminds me that like that is why we are all here is to create more of that and the cycle go. It really is, I mean, ironically, it is that infinity symbol. It really is constantly in motion. You don't hear that that little point's going to hit and explode and give you such a validative, not only feeling, but just a feeling of I get to live this, I get to live and be that, witnesses it. That's, that's really risen for me, especially having, you know, a boy and a girl and how different they are even as siblings. That the differences of those micro moments of joy and inflection point for my son are so different than them with Millie.
• 27:12
  Speaker B: That's so interesting. Yeah.
• 27:14
  Speaker A: Oh my gosh. I mean, like, you know, I, I, I probably say like a broken record. I really wish I could go back to school for like 10 years and just learn about like evolutionary biology and internal family systems and like gender, sibling rankings in order. Because there is something that is so boy about my son. There's something so deeply girly and feminine about Millie. And yet their diagnoses are exactly the same. They present so similarly in some behaviors and so wildly different that the shock of when it's so different ends up being so, even in their, even in like the disorder of it, if that makes sense.
• 27:50
  Speaker B: Yeah, yeah, absolutely. That's fascinating to hear.
• 27:54
  Speaker A: My gosh. Like, like, you know, Millie, Millie has never really with her body gestured to include another person. Like she likes being around certain other people, a couple other younger children and friends, family friends. But she doesn't proactively like bring anyone to join her in something unless it's like an adult, a parent or a Caregiver.
• 28:15
  Speaker A: My son last week was laughing so hard over this grasshopper on a Daniel Tiger show. I mean, it was just like he was jumping really high. And I've seen that. You know, we've seen it over and over again. And I was laughing, and my oldest daughter came out of the bathroom after showering, and she's wrapped up in her towel, and. And Mac and I are laughing so hard, and I go, do you want to show Morgan? And he. He did this. He motioned for her to come. And when I tell you that I have never. I've never experienced that. And I looked at my oldest, and she goes. I'm like, just keep going with it.
• 28:49
  Speaker B: Yes.
• 28:49
  Speaker A: It wants you to join. And it was like this, because I've never experienced a. He does. He's more physical than Millie. He has a little bit more bodily awareness than she does. From an. From a. If you have. There's a scale of apraxic dyspraxia. And it was so fascinating to me because, again, it just challenged all of my assumptions about what he. And how he was bringing people in to join his joy. Right. I wasn't expecting that at all.
• 29:15
  Speaker B: Right. Yeah. And it is so funny when that happens because we have similar moments where Eliza will script something that we've said or. And she'll invite, you know, her brother into something like that, and you're just like, you. You have this, like, human moment where you're just like, wait, what just happened? It's like, no, we don't have time. Like, go, go, go. Like, it just keeps going.
• 29:39
  Speaker A: It keeps going, but wonderful. And you're so alive. And I think I never. And I know I can. You know, I really do feel that, like, we get to live the lives of the mothers of these children who allow for time to stand still in the most beautiful of ways and to. And to feel it so deeply that, you know, getting to live it and knowing or wondering and live in a sense of wonder and anticipation of when that. When those next big, small things happen is. Is part of the mission, I think, that we're both on for how we share.
• 30:10
  Speaker B: Yeah, absolutely.
• 30:11
  Speaker A: Well, Jess, thank you so much for all that you do. I don't want to take up too much of your time, and I like to keep these episodes short because, you know, as the mothers like us, I always think I'm putting it on 2.5 speed.
• 30:21
  Speaker B: Yeah.
• 30:22
  Speaker A: So we take a 41 minute episode. We get to, like, 18 minutes. But thank you for what you do and how you share and how you write and how you live. Gosh, if we ever want to talk about the third space and the positivities of it, of online social media, this is it. This is it.
• 30:36
  Speaker B: Absolutely. Yeah.
• 30:38
  Speaker A: Get some fresh air for me. I'm gonna go sit vlog over in Newark for you. Just kidding. I love it.
• 30:46
  Speaker A: And thank you again and give everyone. Thank you.
• 30:49
  Speaker B: All right. Thanks for having me on.
• 30:51
  Speaker A: You're so welcome. All right, everyone. Well, until next time on the insurance podcast.