Episode 8: Lindsey Rowe Parker

Everything You Know About Disability Is Wrong Podcast

November 8, 2023

Episode 2 Show Notes

In today’s episode, our hosts Erin and Lily are joined by Lindsey Rowe Parker, author of the children’s book, “Wiggles, Stomps, and Squeezes Calm My Jitters Down.” She wrote this book based on her experiences with her children having disabilities, and her herself having a disability as well.

Erin and Lily start off today’s episode by introducing their guest, Lindsey Rowe Parker, and ask her about her children’s book and what inspired her to write it. Lindsey did not intend to write a book, but wrote it based on interactions with her daughter, who is autistic and her son, who is neurodivergent. She wrote about her life with her children during the day and their sensory differences. This children’s book gives children with disabilities more representation and gives authentic voices and room for everyone. Also, Lindsey shares what it was like when her kids were diagnosed and the process she went through. With her daughter, she noticed there were differences in her daughter compared to other kids her age. Her daughter also wasn’t hitting her milestones, so got her assessed and got into the neurodivergent space. She had to unlearn some of her own personal biases that she didn’t know she had. She also thought therapy was for her daughter, but it was also for the family and for those that love her to understand her. Going through this process with her daughter made her realize that she had struggled with some of these things in her own life including depression, anxiety and ADHD. Her friends and family even said they knew she had ADHD already, but she was shocked. She has no anger for the little girl she was, but just sadness.

Next, Lindsey discusses acceptance with disability for her daughter and also for herself. When her daughter was diagnosed, she was advised to not publicly talk about it, but she didn’t want her child to feel any shame for how her brain works. She also found a neurodiversity group and that helped in her healing. She also talks about how autistic children turn into autistic adults. Kids don’t just deal with disabilities. Adults with disabilities also get mistaken as children, which is very damaging. It is important to find a community that validates yourself where you don’t hide the disability. With accountability, Lindsey says she had to throw out traditional parenting expectations. Lindsey doesn’t jump to punishing her daughter if she is not able to do something, but instead, she finds out why. She gets some pushback from people saying she needs to be more strict with her daughter, but her daughter needs connection more than she needs rules. Lindsey regulates herself and her own emotions, then figures out what is going on with her daughter, and it always turns out better than traditional parenting.

Finally, Lindsey discusses how she is better at accepting her children, but not herself. She wants to have all her ducks in a row and struggles when it doesn’t feel that way. Lindsey finally asked for accommodations in her new job, and she is not sure she needs them, but still wants them available to her. Asking for help is something she struggles with, but is getting better at. Her next book is all about an actual day in a kid’s life at school and what kids with disabilities deal with at school. This will be enlightening for teachers and other school staff to understand these kids and their needs. Finally, Lindsey shares the community of writers group that she created.

Learn more about Lindsey Rowe Parker and her book, “Wiggles, Stomps, and Squeezes Calm My Jitters Down.”

Transcript

Erin Hawley:

Hey, Lily.

Lily Newton:

Hey, Erin.

Erin Hawley:

So in today's episode, we have a really important discussion. It's a bit different than the usual parent of a disabled child conversation because our guest also has a disability.

Lily Newton:

Yeah. Today's guest is the ever so talented Lindsey Rowe Parker. We met Lindsey a few weeks ago, and we knew immediately that we wanted to share her story on the podcast.

Erin Hawley:

So when Lindsey found out her child is autistic, she reflected on the diagnosis by switching inward and discovering her own neurodivergence.

Lily Newton:

Yeah, I get pretty emotional towards the end of today's episode. I think that Lindsey's commitment to honoring her own needs alongside of her child's needs are so important to me. And I will also say just a quick content warning that towards the end of this episode, there are mentions of self-harm. So if that's not your cup of tea today, come back a different day to listen to this episode.

Erin Hawley:

Yeah, and I think this conversation, parents and caregivers should really listen to this one because it shows you how diagnosis and acceptance of that is so important for your child's wellbeing and your own wellbeing. Acceptance is a game changer.

Lily Newton:

Yes, absolutely. Acceptance is such a big theme in this episode. And I think also curiosity in that Lindsey stayed curious instead of letting fear take over. And I think we see so much of that narrative of parents finding out that their kid has a disability and just feeling so terrified at what that means. And Lindsey, you'll hear in the episode, Lindsey of course addresses what it was like. And yeah, there's fear involved, but really she stayed curious. And I think that that is, whether we're talking about neurodivergence or other disabilities or honestly, I think it's important also when you think about finding out that your child is queer or finding out that your child is anything unexpected. I think that the way that Lindsey met her kids with such curiosity and a willingness to look at herself is just really incredible and is a really important thing. So let's get into the episode.

Erin Hawley:

Yay.

Jennifer (Music):

Oh my goodness, you are such an inspiration.

Jennifer (Music):

Wow, you really are.

Jennifer (Music):

You're so strong. Can I pet your service dog? Ugh!

Jennifer (Music):

1, 2, 3, let's go. We're artists, parents, teachers, good guys, bad guys, students, leaders. I'm not your inspiration. No, I believe who I am. Got my own expectations that don't fit into your plans. I'm not your sad story, so I wrote it in this song. Everything you know about disability is wrong. Everything you know, yeah, everything you know about disability is wrong.

Lily Newton:

Hey, listeners, welcome back to another episode of Everything You Know About Disability is Wrong. Today Erin and I have the amazing Lindsey Rowe Parker with us who is a children's book author, friend of Easterseals and all around cool human. Thanks for coming on the show today, Lindsey.

Lindsey Rowe Parker:

Thanks for having me.

Lily Newton:

So we like to start with the same thing every episode this season, which is that our... I forgot we were recording video. I started looking down and that's fine. I'm keeping this in.

Lindsey Rowe Parker:

I made a face.

Lily Newton:

Because we're authentic here on everything. So anyway, our podcast is called Everything You Know About Disability Is Wrong. What do people get wrong about you?

Lindsey Rowe Parker:

That is a good one. I think I want to come back. Can we come back to that one? I think all the other things that we're going to talk about probably will spark something that I have not thought about before because-

Lily Newton:

Absolutely.

Lindsey Rowe Parker:

I don't think I've spent much time thinking about that before.

Lily Newton:

Absolutely. Yeah, we can come back to it. It can be our closing question on this.

Lindsey Rowe Parker:

Yes.

Lily Newton:

So a little bit of background for our listeners. We met you, Lindsey, because you wrote a really cool book. Can you tell us a little bit about the book you wrote and what inspired you to write it?

Lindsey Rowe Parker:

Yes. So I wrote Wiggle Stomps and Squeezes, Calm My Jitters Down. It started as just a bunch of little vignette story ideas, interactions that I had with my daughter who is autistic and my son who is very likely neurodivergent. And I just wrote about our life and things that happened during the day. I didn't start out to write a story about sensory differences or neurodivergence, but as I continued to write it, I was like, "Oh, that's what this is." And now looking back at that process, hindsight's usually 2020, right, it makes sense how it got to that place, but I didn't start out to do that. And so the experience over the last few years of creating the story and now it's going to be a series which I'm so grateful for because it really, I think it hit a nerve with people and kids and families could see themselves in that book in a way that hadn't been shown that often before. And I know there's a lot of great books about neurodiversity and neurodivergent characters and sensory differences now. And I think they're coming out at a very quick pace. And this will flow into something we're going to talk about in a little bit, but there's so much great content out there and I just feel very grateful to be just one of those stories.

Lily Newton:

I think we sometimes feel that way about this podcast too. There didn't used to be any disability representation at all. And we're starting to see finally, we're getting some space, but I think that it's really crucial that we know that there's no need to gate keep it. There's room for all of us because how many TV shows have very similar premises and are all about the same kind of people. Content doesn't necessarily... There's no overflow, there's not too much of it because I think about content creators on TikTok, I only ever really want to watch a TikTok once, so bring them all. I want all the content 'cause I'm only going to experience it once. And I know that Erin, we've talked about this with social media advocacy, that we don't want people to be deterred because there's so much of it that actually means there should be more.

Erin Hawley:

Right, exactly. Yeah. I was just thinking as far as this disability in literature, in books, before recent times a lot of disability content was written by people who are not disabled. And so it is very important to have that authenticity because people's perceptions based on what they read, changes who they are. That's the amazing thing about literature, about reading is how it changes you and to have authentic voices is so important for disability rights, disability inclusion, and all of that. So I'm just really happy, Lindsey, that you made these books too. That's really, it's amazing and so important.

Lily Newton:

I could listen to you talk about literature all day. It makes me really happy to see you talk about that. You're not autistic, but it does feel like a special interest of yours.

Erin Hawley:

Yes, yes.

Lily Newton:

Definitely.

Erin Hawley:

Definitely.

Lily Newton:

That's actually a really great transition because Lindsey, specifically I really wanted to have you on the show because I think that from what I know of your story, which listeners I'll have her explain, don't worry, from what I know, you are a really great example of when disability entered your life as a parent, you decided to look inward as well and see yourself. So when we talk about representation, you wrote this book as the parent of an autistic child, but also as a neurodivergent person yourself. So I'd love to just get into that conversation about what your journey was like, what it was like when your kids were diagnosed or when you started to see all of that jazz.

Lindsey Rowe Parker:

I think I have, the beginning of my story I think is pretty similar to a lot of other parents who go through a diagnosis process. I started to see some differences in my child next to other children. We weren't hitting milestones, we weren't doing those types of things. And so I went to get her assessed. And through that whole process, I feel like, I don't know how I ended up in the neurodiversity and neurodivergent space instead of some of the other spaces for autistic people, but I was so lucky that I didn't necessarily need to unlearn a lot because I got to learn right away about neurodiversity and neurodivergence. Sorry, all my things are dinging. Hopefully that's not messing everything up.

Lily Newton:

That's okay.

Lindsey Rowe Parker:

I did have to unlearn some of my own personal biases that I didn't even know that I had. But now learning more every single day about this, I'm like, "Oh yeah, I have a lot of them." Not only about disability in general, but about myself. And so that's an everyday journey, every moment. But going through that process, getting Hazel diagnosed and then starting services, we got paired up with an occupational therapist who was life-changing for me and for my daughter too. But when we signed up for therapy for her, I was thinking it would be for her. It's for her. I will just sit back and watch and all that kind of like, "Oh, okay, it's her therapy." And then I realized that it was not just for her, it was for the family. It was for those who love her to understand her, and being so wrapped up into it and a part of it and experiencing it and then realizing, wait a minute, all these things are the same things that I have been struggling with my entire life. And at that point, I still didn't know that I was neurodivergent until I got into an automobile accident. And honestly, I had, I think burnout, I did neuropsychological testing and assessments 'cause I was like, "I don't know what's going on." And came back with the diagnoses of depression, anxiety, PTSD and ADHD. And I was not necessarily so surprised with the depression and anxiety because at that point I was feeling it really intensely. What surprised me was the ADHD, which again, hindsight shouldn't have surprised me because when I told my family members and my friends, "Oh my gosh, I got diagnosed with ADHD", they were like, "Oh yeah, we all knew that." I was like, "Oh, what? Am I the only one that didn't know?" And so it's kind of funny, but at the same time, it was sad to know that all those things that I had internalized my entire life of not being able to do this right or being lazy or not paying attention or not applying yourself or all those things that you get told, whether that's by actual people telling you or just signals from community society, what have you, fill in those gaps. And that wasn't my real story at all. That was just a story that I made up for myself. And so that is one piece that I really wish I would have known at a younger age. But at the same time, somebody asked me if I was mad about it, mad at my parents for not telling me and mad, and I was like, "No." I understand if somebody feels mad. But at the same time, I think at that point, they didn't have all the tools and the information and the access to things that I am lucky enough to have now. And so they did the best that they knew how to do. So there's no anger at them, but it is a little bit of a sadness for the little girl that I was.

Lily Newton:

Yeah, I mean, I relate to so much of that. I think that it is funny. There's that funny level of as I had the exact same experience where I felt there were people that I was so nervous to tell. I was like, "Oh gosh, what if they tell me that I'm not what they think autism looks like or they think I'm lying", and I just wrote all these narratives. And then I'd tell them and they'd be like, "Yeah, that tracks." And it was like, "Oh." And at first it was like, "Oh wow, that's funny. This is hilarious." And then it was grief. It was like, "Oh, wow. All of these people could see these things about me." And like you said, I was writing these narratives that I just wasn't trying hard enough or wasn't good enough. And I think that there's all of that to balance along with also what you said about how now is a pretty great time to be finding out you're neurodivergent because we have neurodiverse affirming communities that understand that this is how brains work and where neurodiversity is everywhere. And I do sometimes wonder about the social aspects of autism, of the autistic people are bad at socializing. There's a part of me that's like, "Well, that's because a lot of my autistic friends who were diagnosed at a young age were entirely removed from their classmates immediately." If you're taken away from all your classmates at an early age, how are you going to learn to be social? Which is not to say that that wasn't the best we could do at the time, but now is an okay time. So there's so many feelings in that accepting a diagnosis. But I have to say, as a youngish person who is understanding my own brain, it is so beautiful for me to hear you finding this out about your child and going on a journey with her. Because I mean that moment when you just said you thought it was therapy for her, but it was for all of you, I think that that is, if there's anything people take from this episode that have neurodiverse children, that is just a golden nugget immediately. That's perfect right there, that understanding that your child can't go through this alone. And then also that autism, neurodivergence in general, it's not born in a vacuum, it comes from somewhere. So I think that there are a lot of people that should look inward and don't necessarily, and I think there's also, it's scary to admit that neurodivergence does come from somewhere because I think that there are quite a few people who still have such stigmas about disability that then would not want to consider that their child might be autistic because the thought that they might be neurodivergent is too much. What was your acceptance journey like and finding out about yourself, but also your daughter, and what's that been like? How have you found self-acceptance?

Lindsey Rowe Parker:

So initially with my daughter, I was counseled by people close to me to not share. Again, don't talk publicly about it. You should just not make it an excuse. And I know where they were coming from, but at the same time I was like, "That's not going to be our story.' I never want my child to feel any shame for who she is and how her brain works or anything about herself. And so I said, 'Thank you, but no thank you." And again, like I said, I was so lucky to find the neurodiversity affirming community so early on in my journey that it felt relieving. There was a lot of stuff that I was voraciously reading, and some of it I was like, "Oh gosh, I don't want any part of that." But then once I found mostly autistic adult voices, I was like, "Oh." And it's so silly to not realize, and I mean, I had this exact thought, I was like, "How did I not realize that autistic children turn into autistic adults?" But I didn't. It never occurred to me. And so now that I know that, and I am friends with a lot of autistic people now, I have a lot of them in my life. My illustrator and my partner in the book series is autistic. And it's like, "Oh my gosh, this is such a vibrant community of people, creators, parents." You can be neurodivergent in any of those spaces. And I'm just happy that I get to be a small part of it.

Lily Newton:

Yeah, I think it's so important, and I'll take you even a step further, I think that with disability in general, we have so many views that it's an adolescent thing, kids deal with it. And I know, Erin, you experience a ton of infantilization because people just don't assume that you're an adult if you want to talk on that.

Erin Hawley:

No, they don't think I'm an adult. Okay. So I have a YouTube channel where I talk about reading and books. That's my interest. And YouTube turned off my comments because they thought I was a child and I just turned 40 years old. That is just one thing. But my entire life, everyone assumes I'm a child or that I don't live a "normal life", and that's really damaging. What Lindsey said about finding community is so important to validate yourself. Because when you're in a room with all disabled people, you do feel validated and you can just be yourself. Which is why I love this podcast.

Lily Newton:

It is great. It is wonderful to have a space like this and for so many different reasons, so many people with many different disabilities experience that same thing, that infantilization, that people will always try to compliment me on my eccentric personality by saying, "You're so childlike, you're so playful." And I know they mean it in a kind way, but ultimately I have no shame in saying that I am disabled and as a disabled person, don't freaking compare me to a kid. No disabled person... You know what? This is an important moment of everything about disability is wrong. Do not, if you're listening to this and nothing about disability, if you ever think that it's a good idea to comment on the childlike nature of someone who is disabled, maybe just file that back as a thought instead of a spoken aloud thing. I really think, but people don't realize how often childhood is, especially for neurodivergent kids, actually no, for disabled kids, childhood is a lack of autonomy in a lot of ways. And disability can feel like a lack of autonomy sometimes. So we don't need to compound that. I just am so moved by everything you say, Lindsey. And I think that I wanted to say your kids are so lucky, but I actually hate that that's true. I wish that all neurodivergent kids were met with as much acceptance as you have given your children. And I think that all of the ways that my parents accepted me, even though we didn't have a diagnosis for me, my parents just accepted that. I think when I was a kid, it was the highly sensitive child was the phrasing that was used, and my parents chose to talk about it. And I knew that my parents' friends knew I was highly sensitive and there definitely would've been times that I wanted them to hide that. And I think you made the smarter choice as a parent saying that, "No, I refuse to hide who I am or who my kid is because then she'll just learn to hide forever." And I think that the ways in which my parents did not allow me to hide really have allowed me to thrive as an autistic adult. And that is important to remember that disabled kids become disabled adults. So I think that's just really incredible.

Erin Hawley:

I love what you said that your parents didn't let you hide because so often disabled kids by the systems in place are sheltered and not in the community. So that having supportive parents, that is crucial to your self-worth and self understanding. And it makes me sad that a lot of kids don't have that.

Lily Newton:

Yeah, I agree. Erin, I always think about, I think this is a season one episode where you talked about getting your wheelchair for the first time and zipping around doing your chores way faster than before.

Erin Hawley:

Yes.

Lily Newton:

And that's the phrasing of the way you said that just makes me so happy because that is so on topic of everything we're talking about, just accepting your kids as they are and holding them to the standards that you would hold them to. And here's an interesting one, accountability as well is a hard topic to discuss. I know that I, to be fair, my parents didn't know that I was autistic. I didn't find out until I was in my twenties, but I mean, it was very hard to tell me no when I was a kid. And now looking back, I can see I was having a lot of meltdowns and I was a pretty spoiled kid at certain times. And I think that I thought that I was always going to get my way because my meltdowns were scary and my parents didn't know what was going on, so they didn't want them to be happening. So they'd just be like, "Let her get her way", to avoid that. So how old is your daughter?

Lindsey Rowe Parker:

Mine, she's almost eight.

Lily Newton:

Cool. How do you handle accountability or how do you talk about stuff like that? This is just my own peer interest, I think.

Lindsey Rowe Parker:

Well, I had to throw out all of my traditional parenting expectations. I was raised with traditional parenting, whatever that means to you. But it was you respect your parents and you don't talk back, all those things, which I still want that for her, but at the same time... I don't even know how to phrase this. I don't not hold her accountable, but I don't hold her to the same standard as I hold an adult because she's still a child and she's still learning. And so when I expect something of her or I want some kind of behavior or something from her and she's not able to do that, I don't punish her. I try and find out why and what's happening with her. And sometimes that can look really permissive and like I'm just letting her have her way. But I feel like it's more of being respectful of her as a human and finding out what the heck is going on instead of drawing a hard line in the sand and saying, 'You better make this line otherwise you're going to get any kind of repercussion." It's more of like, "What's going on? Can we talk about this? Can we connect?" And I do get a little bit of pushback from people outside and they're mostly my immediate family. They're like, "Well, you need to be a little stricter." And I'm like, "I don't think that's what she needs. I think she needs connection more than she needs rules." And it's not always easy, and I don't always do it right, but every time that I don't listen to my gut and I go with what I think traditional parenting should do, it backfires, every single time. But if I stop for a minute, I need to regulate myself first, always. If I regulate myself and my emotions and what I'm feeling and set those aside for a minute and then go and figure out what's going on with her, it always, always turns out better. And it can look on the outside like it's permissive, like I said, but I have seen the benefits of choosing one over the other.

Lily Newton:

Certainly, and I think it's important, it might look permissive or what I should do. I think those are such common neurodivergent thought processes of should. Should lives rent-free in my brain, and what does this look like is a constant worry. But I think that you're doing the right thing there for sure. Recently I have a little bit of a hard time going to bed, which I think is a pretty common neurodivergent thing. I actually recently watched a video about how people with ADHD tend to pass out rather than fall asleep, which I really felt that. And in talking about that, they were talking about the sequential order of bedtime and how that can be really hard for specifically autistic kids who struggle with sequential order, which is the thing that I as an adult still really struggle. Going to bed sometimes is really difficult because I know it means I have to first change into pajamas and then put on my skincare and then brush my teeth and then wash my, and there's so many steps to it that it just feels impossible. And I was thinking about that and I was hit with this memory where when I was younger, I used to get really tired on the couch and then I would tell my mom, "I need to go to bed right now." And it became a thing where it was like she would wait until I would say it, and as she would say it, she would turn off all the lights, she'd gather everything possible, she'd hand me my toothbrush on the way up and I would brush my teeth as I was walking up, hit the bed and fall asleep. And when I was a little bit older, I think I recently actually was like, "Well, maybe I have a hard time going to bed because my mom did stuff like that for me. That was permissive and she should have just made me go to bed." But now I have a hard time going to bed because I'm autistic and a lot of autistic people struggle with insomnia. And actually that was her accommodating me. And looking back, I see that sure, it might've looked like it was permissive or that she was letting me do whatever, but I'm still super autistic. I'm 25 years old. I have a loving, supportive community and a job. So she did something right. Maybe it was permissive, but it was what I needed. So hearing you say that is just so affirming to my autistic heart. I am just so happy for your daughter. I'd love to hear just specifically... So this season, originally we were talking about work and employment, but we've just allowed it to be a full season of everything about disability is wrong, and that's the theme. But on the topic of work, what accommodations have you made for yourself since getting diagnosed?

Lindsey Rowe Parker:

This one's so fun to talk about, I feel like, because if we back up and talk about acceptance, I had such an easier time accepting accommodations for my daughter and also now my son than I have accepting accommodations for myself or asking for them because I still am struggling with giving myself grace for things that are part of my neurodivergence after I'm 41 years old now. And so I've had a lifetime of overcompensating. And so this is actually what I'm going to go back to about what people get wrong about you is that on the outside I usually look really buttoned up because that's overcompensation from 40 years of being scatterbrained and getting in trouble. And so I have figured out ways for myself to make it look on the outside. I have all of my ducks in a row all the time. I definitely do not. And I struggle with that at home when I'm in my safe space and I'm like, "Oh my God. Woo." But for the first time, I just started a new job at a big nonprofit that I absolutely love, and I did, I finally asked for some accommodations for the first time ever, and it was hard to do it 'cause I was not even sure if I needed them, and I'm still not sure if I need them, but when I do, I want them to be available to me so I don't burn myself out again. It happens all the time. And so I think being okay with asking for help is something that I'm not good at and I never have been. And I think that again is from overcompensating for a long time, if that answered the question. I think I went on a tangent.

Lily Newton:

No, it does answer the question. And it's also, I think it's really important for disabled kids to hang out from a young age of many different disabilities because it is in my disabled friend communities where I have learned that my own hesitation for accommodation is my own internalized ableism. And I would never ask a friend who needed a ramp to enter a building to just power through the stairs. I would never do that, but I find myself being like, "Just power through this meltdown. Don't let anyone know what's going on. Just power through it." And I think that it has been very beneficial for me to call out my own ableism in that and say like, "Hey, if my disability were external facing, would I be asking this same thing? But because it's just me up in my brain having this conversation with myself, am I going to gaslight myself and tell me that it's not real?" So I think I totally understand that, and I just think asking for accommodations, it is just not as simple as people make it out to be.

Erin Hawley:

Erin Hawley:

No, I know for me, obviously I have a physical disability that requires accommodations, but I have anxiety, so I always feel weird asking for time or to step away. But with our team here at Easterseals, it's a lot easier because everyone on our team pretty much has a disability. But yeah, there's definitely a hesitation about asking for retaliations for mental health because you do have that internalized ableism a little bit, like are people going to think I'm faking it just to get away from work. So it's hard to navigate but I'm getting used to it.

Lily Newton:

And I think that's such an important point. Our team that Erin and I work on is by far the most accommodating team I've ever been on. And I feel quite certain if I were to ask for certain accommodations. Well, I have asked for certain accommodations and they've been met really wonderfully and just so supportive. And still it terrifies me to think that I might need to ask for other ones. And I think that if you happen to be a people manager and you're listening to this, it's important to understand how scary it is to ask for accommodations and how I actually don't know if I would've asked for the accommodations that have been life-changingly helpful in my life since this starting this job. I don't know if the other people on my team hadn't immediately when I started, been like, "Hey, we're here to support you. Let us know what we can do." And just that simple phrase was so important and opened a door for me to ask for help. And I think that's just super-duper important. And you know what, actually this relates back on, I think that your book, the reason it was so moving to me is because it shows how acceptance can tend to be the most important accommodation to begin with. To accept like, "Hey, I need you to accept that the way I do this is going to look different than what you think." And I even think about, I'm playing with this toy while we're filming, and I'm like, "Oh no, we're filming. But no, I'm not going to be ashamed of that." That's the whole point of this podcast. And I was really nervous. I didn't want to do video at all the first season, and we didn't because I was so scared of. I tend to raise my shoulders a lot and wiggle, stomps and squeezes. I'm wiggling stuff and I'm doing stuff. And I think that your book is really awesome for that reason just to, I let adults who are reading it to their kids kind of be learning alongside the kid that's learning as well. Like, "Hey, there's actually nothing that needs to be changed about my child stemming. I can just let them self-regulate. It's actually okay", which is no shade to the parents who thought that it was something that had to be fixed. We live in a pretty scary society where it can be really scary to be different. And we've seen over and over again based on the minisms that exist in society, that being different can mean danger actually. It can mean just straight up danger. So every time I talk about acceptance, I also want to be weary of that. It's a lot easier to say accept differences when you aren't thinking about the way that maybe what is the different danger level for letting a young White child stem in public versus a young Black child who is unfortunately often when young children of color are stemming, it's seen as dangerous. And that's super important why I think we need to talk more about what neurodiversity looks like and what autism looks like. And so we can see that people who are behaving in a way that you might call erratic or you might call weird, is nothing to be scared of because when people are scared, it's not good for anyone involved. That was quite a ramble, but I'm interested, what is your next book? You said it was becoming a series. Can you tell us about the school version?

Lindsey Rowe Parker:

Yes. So Wiggle, Stomps and Squeezes, Calming My Jitters at School is the same child just in a school setting. And so it follows very much the same kind of pattern of those sensory experiences. As well as, one thing that was really important for myself and my illustrator when we did the first book is I got a lot of feedback that it was too quiet of a story, that there wasn't this big dramatic thing and that we needed something dramatic. And I mean, there is a point in the story where the child has sensory overload, but that's not the focal point of the story. That's one moment in it. And the child is able to, with support, regulate through that. We wanted, my illustrator, Rebecca Burgess, who is incredible, we really wanted this to be representative of supportive adult figures also. And so I kept going until I found somebody that would publish it without having some big drama or need to. It felt exploitive what they were asking me to do. And I was like, "I don't want to do that. I don't want to do that. This story is representative as is without having some big drama thing happen in it." And it's more representative of an actual day in a kid's life instead of not every single day is going to be some like. And so the second one follows that same feel. All the adults in the second one are very supportive. They empower the child. They have strategies in place for the child, so there's no weird teaching in it. It's just you're basically moving through the story together with support, if that makes sense. And I'm really, really excited for this one because it is in a school setting and kids spend a lot of time at school, and it's not always a pleasant experience for a lot of neurodivergent kids and disabled kids in general. And so this one, I hope it quietly shows educators or parents or maybe folks who are not quite as attuned to that neurodiversity affirming approach that they can have impact and still, they don't have to hold so tightly, I guess. You don't have to control so much. Let the kid lead and they'll show you what they need if you listen to them.

Lily Newton:

Yeah, absolutely. I think that's crucial because I think that a lot of teachers unintentionally become disabled kids' first bullies because they don't understand the need for autonomy. And like we've said, autonomy being taken away is just such a familiar thing. So I think that your book is really important, and I think that I'm excited for teachers to read it and just be able to understand a little bit more like what we were talking about with the permissive parenting, that you're not being a permissive teacher by letting a kid run around who needs to run around instead of being in a desk all day. It's okay. I think that's really wonderful. I want to talk more about the awesome community of other writers that you have created. But before we do that, just want to take a quick second and go to break. Yeah, we'll be right back. Erin (commercial segment): This podcast is brought to you by Easterseals. Lily (commercial segment): You know, we work for Easterseals, but maybe our listeners don't know what that is. Erin (commercial segment): Easterseals is leading the way to full access, equity and inclusion for disabled people and their families. Lily (commercial segment): And we've been doing this for more than a century. Erin (commercial segment): This includes helping disabled people find meaningful employment and addressing healthcare needs for all ages. Lily (commercial segment): We are proud to serve communities across the country and ready for the next a hundred years. For more, check us out at easterseals.com.

Erin Hawley:

So Lindsey, let's talk about the community of writers that you created. What was that like and why did you decide to do that?

Lindsey Rowe Parker:

So I joined a lot of groups on Facebook, just again, voracious for information and not only neurodivergent groups, autistic groups, parenting groups, but then also children's literature groups or kid lit groups and being in all those spaces simultaneously, I kept seeing some reads going through and I was like, "Wait a minute. I'm new in both of these spaces. But there are other people in here that are both neurodivergent, they are also children's book authors, they're creators, there are illustrators, whatever their medium is, and there are stories coming out. They're starting to really churn out." And so I started reaching out to them. For full disclosure, I used to do a lot of influencer work in other jobs, so it's like in my blood. I couldn't not do it. And so I was like, "Hey, I buy your book. I love your book. Do you want to do a campaign with me? All you need to do is give me a quote about why these books are important for kids, and I will show your book and I will show your headshot and I'll promote it during sensory differences month or sensory processing awareness month", which is October. And every single person that I've reached out to was like, "Yeah, absolutely." So the response was great. And I think the first year, I think it was maybe 2020, I did it the first time, I had 10, which I thought was great. It was like 10 or 11, something like that. It was 10 plus is what I called it. And this year I did take a break last year because I moved, but this year I think we have over 20 something now. And so they're just incredible creators, mostly with children's books about sensory differences just because there are just so many books out there right now that deal with neurodivergence. I wanted to keep it a little more focused, otherwise I think I would be all over the place. But there's a great group of really passionate and caring people who just want to get stories that are authentic to kids with sensory differences out into the space. And I think one of the biggest challenges that I have with my books is accessibility as far as distributing them. People can buy them, but I also want it to go to people who may not know about them or can't find it or just don't know what they don't know, don't know that these resources are available to them, that don't know that there are all these stories from neurodivergent creators that highlight positive experiences that their kids will understand and feel and see themselves in. And so I just couldn't not do it just because that publicist influencer part of my life as really strong. And I also wanted all these folks to know that we're not competition for each other. We amplify each other, we share each other's stories, and there's absolutely room for so many more stories. So that's how that came to be. And it's still in its infancy, but it's growing and I'm excited about it.

Lily Newton:

I love how specific it is. The sensory differences or sensory processing is the main focus of it, how specific it is and how even in such a specific topic, there's not a need for competition because sensory overwhelm is such an intense feeling. The thought of being able to read any book about it while I'm a kid, getting to understand what those feelings are, it makes me genuinely choke up thinking about it because I'll be just frank about it. Sensory overload led me to some pretty intense self-harm when I was a teenager. And I think that there are a lot of people out there, especially I think about teenage girls who struggle with self-harm and have never put together the sensory overload state of that. Because for me personally, there's no feeling. It feels quite as out of control as sensory overload. I mean, it feels like I'm falling out of an airplane. I often tell people that when I'm in sensory overload, it feels like my blood and my bones are too big for the body that they're in. And now I can recognize that feeling, the falling out of an airplane, that my body and bones are too big, I can recognize that, and it actually is as simple as sometimes I just need to shake it out or sometimes I need to scream or sometimes I need to change shirts. But without that understanding, something that could have been fixed with a fidget toy became dangerous and became genuine danger to my body. And I think that learning from a young age about what sensory overload feels like is just so important and what you can do. So I think all of that is just to say thank you for the work you're doing to make these books more public and to make more people read these books. Just genuinely from the bottom of my heart, and this is literally not me thanking you, but my teenage self. Thank you.

Lindsey Rowe Parker:

You're going to make me cry.

Lily Newton:

I think it's really incredible work, and I think it's really important. Now I'm in my feels, but that's all. I've put a lot of words into what I think the importance of your book is. But I'd love to get your own phrasing on it. What is your ultimate goal? What narratives are you hoping to change with your book?

Lindsey Rowe Parker:

One of the things I write in every book is that the world is better because you're in it and not because of what you can do, what you can produce, what milestones you meet, none of that. It's better just because you are here. You don't have to accomplish anything. You don't have to meet anyone else's expectations. You have value just as you are. And so I know that sounds all mushy and feely, but that's truly, I feel like that's what everybody really needs and wants. You're not expected to do anything or be anything other than just who you are. So I want kids, and the people who love them, when they read this and they see these interactions and they say, "Hey, that's just like me", and it's a happy, and there's a little challenge in it in the storyline, but it's nothing that is not overcome and you have value just as you are. I mean, I think that's my bottom line. That's what I want my kids to know.

Erin Hawley:

Erin Hawley:

No, I love that because in the disability space, there's a lot of shame about not being able to do something, not being able to be as productive, but just existing is enough, and even in advocacy, existing is resistant, and it's just like, you're enough. That's it. And I think a lot of people need to hear that because it's, especially in today's society of social media and all of that, you're bombarded with all these messages of do something, be creative, whatever. But no, just exist. That's it.

Lily Newton:

What a beautiful message for this episode. I think that that was just so beautiful. It really is. It is resistance to be okay with your own existence and to reject what comes so naturally in capitalism that my worth is my productivity. I said this earlier about something else, but I think that for me, seeing my own internalized ableism has helped me get through that kind of stuff. That ultimately that feeling of you got to do, is pretty ableist, is rooted in a lot of practices and thoughts that caused the isolation of disabled people that we've talked about so many times on this show. I think that's an absolutely brilliant thing to end on it. I feel like this is just the perfect way to end the episode on this topic of just exists, it's enough. I love that. Lindsey, I want to come back to the initial question, just in case you have anything else you want to add on that. Is there anything you want to add in terms of, our podcast is called Everything You Know About Disability is Wrong. What do people get wrong about you?

Lindsey Rowe Parker:

Just because if you don't see it and you don't experience it, it doesn't mean it doesn't exist.

Lily Newton:

That's right. That's absolutely right. Correct. I agree. What a wonderful episode. What a wonderful conversation. What a wonderful human you are, Lindsey. Thank you so much for coming on this podcast.

Lindsey Rowe Parker:

You're making me blush.

Erin Hawley:

It was amazing.

Lily Newton:

I mean, I could make this podcast last hours by just talking about how wonderful I think you are and how parents make all the difference when they're supportive and it's really, really important. So thank you for just existing, Lindsey.

Lindsey Rowe Parker:

Thank you. You guys too.

Lily Newton:

Thanks to our listeners for tuning in. This has been a super wonderful episode, and we'll see you next week with... Well, that's wrong. We'll see you next time on Everything You Know About Disability is Wrong. Even just listening to that again has me back in my feels.

Erin Hawley:

I know, it's such a great, great conversation.

Lily Newton:

We've had such an amazing exploration of neurodiversity in these first two episodes, and I'm just so grateful for this space and really excited for the rest of the season as we get into other disability types, be it other invisible disabilities, other physical disabilities. We'll get into it. We've got a whole season. It's going to be wonderful.

Erin Hawley:

I know and I think everyone's going to be really excited to see who's coming up next. I'm very hyped. I can't wait.

Lily Newton:

Me too. We've had such incredible guests and the guests keep on coming. They are incredible. It's going to be an amazing season. Stick around.

Erin Hawley:

Thanks for listening to our podcast.

Lily Newton:

If you liked what you heard, be sure to write a review, like and subscribe wherever you get your podcasts.

Erin Hawley:

Join us next time and we discuss more reasons, like Everything You Know About Disability is Wrong.