As an autistic mother with neurodivergent children, our guest Rebecca Vitsmun was inspired by her personal experiences to provide an accessible story that inspires creative imagination in readers of all ages and backgrounds. Her book, Eliza Dee’s Universes highlights Eliza Dee’s colorful adventures as hyperphantasia leads her to explore memories that springboard creative fantasies.
The book draws on Rebecca’s own experiences with being a female phenotype autistic person who experiences the effects of a few “invisible” disabilities like night-blindness, POTS, and Ehlers-Danlos Syndrome.
Contents
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Show Notes:
- Get ad-free podcast downloads by joining us on Patreon: http://patreon.com/neurodiverging
- Buy Eliza Dee’s Universes from Amazon here or Bookshop here.
- Learn more about Rebecca Finch Vitsmun at rebeccavitsmun.com, where she includes a resource describing “invisible disabilities’ ‘ in more detail.
- She is also on Facebook at www.facebook.com/RebeccaFinchVitsmun; and on Instagram, @rvitsmun
Guest Bio: Rebecca Finch Vitsmun
Rebecca is an autistic night-blind author with hypermobile Ehlers-Danlos Syndrome. Rebecca is a humanist, embracing people of all religious and cultural backgrounds, who is known for coming out as an atheist on CNN after a tornado destroyed her home in 2013. As a member of the Nones, also known as the not religiously affiliated, Rebecca has been at the forefront of a cultural shift that has led this group to emerge as the largest identified religious group in America. She has a degree in Arts and Humanities from the University of Louisiana at Lafayette and lives in Tacoma, WA with her spouse and five kids.
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Transcript:
DANIELLE: Hello, everyone, and welcome back to The Neurodiverging Podcast. My name is Danielle Sullivan, and I am your host. Thanks so much for tuning in today.
Today, we are talking to Rebecca Finch Vitsmun, who is an autistic night blind author with hypermobile Ehlers-Danlos syndrome. Rebecca is the mother to five children, some of whom are neurodivergent, and has written a book called Eliza Dee’s Universes.
It’s her debut book, and it shares a really beautiful story of a young girl who experiences the effects of a few invisible disabilities, including night blindness, autism, and Ehlers-Danolos syndrome, and also POTS, and a couple other things.
It draws on Rebecca’s own experiences with being a female phenotype autistic person, and it just came out, the book, in April of this year. The book also highlights Eliza Dee’s hyperphantasia, which is something that Rebecca, the author, shares along with her. And so in this interview today, we’re talking a ton about Rebecca’s own experiences as a hyperphantasia-experiencing, night-blind autistic person, her experience parenting her kiddos with her unique brain, and how she was inspired to write this book, which really does a fantastic job of showcasing the experiences of a young autistic child in a lighter way than many other books out there. I really loved the story; the art is amazing. I really think you’ll like this interview today, so please stay tuned.
Before we get into that, I do just want to thank our patrons at Patreon.com/Neurodiverging, who throw a couple of bucks in the pot every single month to support this podcast and keep it going. You can become a patron by going to Patreon.com/Neurodiverging, and the $3 tier, you’ll get ad-free access to this podcast, access to our neurodivergent-affirming parenting group, the ability to talk with other Neurodiverging fans on our very active Discord. And also on our Discord, there’s this nice little section where you can suggest content ideas for me. If you would like me to be doing a podcast or a blog on a specific topic that we have not covered yet, you can do that all on the Discord. Thanks so much to our amazing patrons for sponsoring this episode of Neurodiverging.
Getting to Know Rebecca Vitsmun
Welcome to the podcast, Rebecca! I’m really happy to have you on today. We’re talking about your book, which is beautifully done. I was really excited — I got an advanced reader from your publisher, and I really love the art, but also the whole story is really cute (laughs softly), and my kids really liked it. So, I’m really excited you’re here! And I’m very excited to talk more about your work. Will you mind telling folks a little bit about you and what drove you to write this piece?
REBECCA: Yeah, sure! My name is Rebecca Vitsmun. I am a stay-at-home mom, and I have been a writer. I got a degree in Arts and Humanities from the University of Louisiana at Lafayette back in 2005. But my life has been, like, mostly taking care of children. But I was sitting with my stepdaughter two years ago on the couch, and we were talking about college because she was 14 at the time, and that’s the conversation at hand, and I was like, “Oh, yeah, I have a degree. It’s even in,” like, “writing or humanities.” And then she’s like, “Oh, I’ve never read anything you’ve written.”
And I was like, “Oh, no!” (laughs) I felt so bad. I felt like a failure, honestly, as a writer, as a parent, as a person with a college degree. And so I was like, “Well, you probably don’t want to read something about collectivism versus individualism, right?” —
DANIELLE: (laughs)
REBECCA: And she’s like, “No, that’s okay.” And I was like, yeah, I’ll write something for ya’ll! That’s a good idea. I’m going to write something that all my kids can enjoy. So I sat down, and that’s how the book came about. And so, yeah, it was a part of my parenting.
DANIELLE: That’s a really good — I’m sure there are some listeners on the podcast who would also love to read about collectivism versus individualism (laughs). I loved a lot of things about the book, and I’ll try not to clutter them all at once; I’ll try to strew them so that we can actually have conversations, but one of the things I really liked was that you’re highlighting a couple of comorbidities.
Writing A Disabled Child Character
A lot of folks don’t like that word, but medical challenges, disabilities, comorbidities, that are, kind of, strongly associated with autism that a lot of us autistics have also, like Ehlers-Danlos, like POTS, like hyperphantasia. And you don’t see —- Like you barely find good kids’ books just about autism, you know? Much less a little girl who is autistic, and also — Most of the book is kind of her hyperaphantasia experience, right? Like there’s bits strewn, and that was so cool to see. How did you decide which bits to include? (laughs softly) You know, when you were building this character and this story?
REBECCA: So, whenever I started to write the book, I was starting with a concept I had written about dozens of times. Like, who knows how many times? Maybe 50 times. It was just a nonsensical amount of times that I’ve worked with the same concept for various art projects. And so I was like, okay, I’m going to start with that same concept and write a children’s story about it. So I started with that. But then I hired Jennifer Reece — she was the editor of The Hunger Games, I actually hired her to edit my book, and she started with, “Hey,” — you know, she was excited to work on the project, and she’s like, “So go buy children’s books off of the shelves or look at them and then edit or don’t edit, and then whenever we start it’ll be with whatever you turn in at the end.” And so, of course, I took her advice!
So I went and I took books off the shelves and what I noticed was they all had a character (laughs). Mine did not! Mine didn’t have a character at all! It was like a nebula, “she” (laughs).
DANIELLE: That’s so interesting!
REBECCA: Yeah, it was called She Shines was the original title for the story. No character whatsoever. And so I was like, well, I’ve never really made a character. I’ve always done these abstract, conceptual adult things, so I decided to Google, like, “How do you write a character?” And it was, write what you know. And I thought to myself, “Okay, what do I know?” And then I was like, autism, Ehlers-Danlos syndrome, POTS. This is what I know. She has to go through all of that (laughs)?
And honestly, at first it was so painful, but then I started to work with her and think about who she was. And I was like, wait a minute, she’s little and has her diagnoses. She knows! She has the support she needs. It’s not the same as me, like, bending into pretzels and then suffering in my 30s. Her family has the information and is like, “Hey, don’t extend your joints too far; that’s not good for you,” and then she’s able to use that information. So, because of that, I was able to create a character where I thought, well if she had all the support she needed, what would be left? It would be her different abilities, like her hyperphantasia. She’d still have her special interests, like astronomy, zebras, and art.
She’d still have, right? These hyperfixations where it just comes out in everything she thinks and does. And then the way that I could tell the story was the way that I experience the story, right? Because I experience it through hyperphantasia. Like, the concept has always been me and my hyperphantasia, and it’s something I’ve been doing since forever (laughs softly), as far as I can recall. And so I thought, “Okay, this is a perfect way to showcase who she is,” is to show her filter, essentially, because every single moment of an autistic person’s life is done through the autistic filter. And so I showed her filter. And so, yeah, that’s how I went about showcasing.
And then there’s a couple of hidden things in there, too, like the way that she sits that demonstrates her POTS because we always sit either concave or with the W-sitting position and EDS. And then the most hidden one is the mast cell activation syndrome, which comes out in — The book is called Universes and so one of the universes is a universe of flowers, but she’s allergic to flowers. I’m allergic to flowers, but I do like thinking about flowers, and I do have a universe of flowers in my head despite my allergy. And so that’s how I showcased the various conditions.
DANIELLE: So what I really liked about the book — I mean, the artwork’s gorgeous, so your illustrator is phenomenal, but also — I guess, anytime you read any book, it draws comparisons against what is on the shelves next to it, right? And a lot of children’s books incorporating disability in any way, even the ones that are meant to be really very inspiring, are kind of heavy!
Like they’re, you know, “This kid is different. This kid is disabled. It’s going to be hard, life is going to be hard. Other people are going to work hard to make you feel like a human being.” And what I loved about Eliza Dee’s is it was the stuff was there, like you could see it, she was experiencing it. But it was also like you said, she’s a little kid! And her life seems very bright in the colors and in the art, and joyful, and full of her interests. So you can find the kind of cues to disability, right? Some of that is more outspoken, and some of it is suggested more, but it’s such a lighter take, you know, when we’re trying to talk to our kids about a complex subject like that, it was beautiful to see, and I think it’s so rare.
REBECCA: Yeah, thanks. So, with the artist, I actually worked hand in hand. I interviewed like 200 different artists, and I was looking for somebody with an art style that matched what goes on inside of my head. And she was, you know, amazing!
And I forgot just a minute ago, really quickly, night blindness was another one that was covered, and the way that that one shows up is the star depictions are always off. Like they’re intentionally not correct — Because I have no idea what stars really look like. It’s just a mixture of the pictures that I’ve seen and the art that I’ve seen. And it’s just like, that’s what I assume-ish is in the sky, sort of (laughs).
And so whenever she is going into her thoughts, it’s the same. It’s how I see it, and so I was able to describe those things to the artist so that she could depict the experience. And that’s what I was going for is just here she is existing as herself, you know? And it is light and night. Like, I had fun! Even the painful stuff — I mean, I have autism, and so what’s associated with that, for me, at least, is interoception, so I couldn’t really feel my body.
So I couldn’t experience the pain, even though I guess it was happening, and it was damaging my joints and all that other stuff, but I did not have this horrendous painful experience because I was too busy being in la la land (laughs). You know? And so I wanted to show exactly what it felt like, and I feel like I did.
DANIELLE: Yeah! And I — Also an autistic person, though our experiences are very different and, yeah, no interoceptive, just very low on that scale. And the same thing happened when I was a kid. I was constantly doing things that now, as an adult, I’m like, “That caused some problems!” Now that I’m approaching 40, you know? But when you’re a kid, you’re just in your present. You’re in your thoughts, in your body, in your space. And she flows in the story from one universe of thought into another universe and that flow is gorgeous.
And I also love all the little allusions, like there’s some zebras for that community. I saw the flying spaghetti monster and went and found one of my partners and was like, “There’s a flying spaghetti monster in this book!” I couldn’t remember ever seeing one of those in a kid’s book before. It was really cool!
REBECCA: I don’t think there are any.
DANIELLE: It was really cool there (laughs).
REBECCA: (laughs) Yeah?
DANIELLE: Yeah. It was really lovely.
REBECCA: Yeah! And the thing, too, is the Flying Spaghetti Monster, the group itself, it’s open to people of any background, and I know they have people of all kinds of religions who are part of it, and they’re in parades all around the world and everything. And I actually have — They’re family friends! We have holidays together who march in the parade with their little boy, and he’s kind of like an inspiration of that particular universe.
DANIELLE: We have one that goes on our not really a Christmas tree in winter that just makes me very happy every time we pull it out of its little box to put it up in the fall, so.
Experiencing Hyperphantasia
So a lot of the book — I would love to focus a little bit more. A lot of the book focuses on an experience of hyperphantasia — Which I said hyperaphantasia before because I mushed two different words together, but hyperphantasia, would you be willing to talk a little bit about either your experience of it or what you know of it for the book? Because we haven’t had a guest as far as I know who experiences that before, but it’s not uncommon, right? So it would be really cool to hear from you if you don’t mind.
REBECCA: Yeah, no problem. Okay. Yeah, I honestly think that a lot of people probably experience this and they just are not aware of the word yet.
DANIELLE: Yeah.
REBECCA: Because aphantasia has been researched a lot because it gets more in the way of being able to do things, where hyperphantasia sometimes even adds to your ability to do things, and so you look highly competent whenever you’re actually struggling, and nobody can see it (laughs). Like I can get an A on a test, but I can’t feed myself. There’s a lot of little components that come into play.
But, the essential test for it is you’re supposed to imagine an apple, and they say, “Close your eyes, imagine an apple.” And, “Does the apple have color? If you zoom in, does it have spots or imperfections? Can you cut it? Does it glisten when you look inside? Can you interact with this apple?” And if you are somebody who can do those things and have this present apple in your mind — Like right now I’m doing that. I had an apple the whole time (laughs), right? Like, I was holding it and interacting with it while talking. And you’ll see that, too, as the person will be looking as though something’s there or interacting with an object like it’s there. A lot of illustrators with the hand movements and stuff like that.
And so it’ll be that you have this picturing ability, but it’s like cinematic. But it’s not just things you’ve seen, it’s you’re projecting from your knowledge of other things, these items and so you can, like, interact with them or push into that and see where it goes. So there’s two different things that come from this. One is an immense ability to recall autobiographical detail. Not every single moment of your entire life, but if there’s something with detail, you’re able to sit there and you remember the reflection off the basketball floor (laughs), like the gymnasium or whatever. Like, there are all these details that are included.
And so somebody who’s communicating with hyperphantasia will have, like, a lot of autobiographical details. They’ll be kind of unable to distinguish what is and isn’t important because it all kind of feels important because it’s so immersive, but they can also have an extensive ability on projecting things, but it’ll be great at hypotheses or theories or predictions of what will happen based on the information in front of them or just straight up fiction, right? Because you can predict if, given these circumstances, what would happen.
But also you can write things that have never happened and have them kind of feel as though they’re happening. Like you can add in all these minute details that you’re just creating as you go along because of the way that you think and process and experience information. And so, that’s why if you ask an author who experiences hyperphantasia and you have like, oh, can you have this information? Well, they can tell you all about the stuff that’s not written inside of the book (laughs). You know?
DANIELLE: Yeah.
REBECCA: And they either have it or they don’t have it, but you can also push into a zoom-in, zoom-out kind of thing. And so that’s why I went with universes because, in my mind, I can zoom in. Like I’ve said it before in some places, but I can zoom in to a proton and find universes within a proton, or I can zoom out and pop right out of the universe and find nonsense out there. Of course, I’m just making it up, but that’s my experience is this making up of details, or giving my best guesses scientifically, or reflecting on the knowledge that I’ve had come in. And a lot of times I process things through shapes. Like I do a lot of drawing with shapes because that helps me process information, because information generally lines up in certain ways. And so I kind of catalog details.
I say that it’s like having a filing cabinet where I can just pull the file and then put it in front of me, and then look at the details and zoom in, zoom out, that kind of thing. Like I had a friend once who said, “Picture a donkey!” And I’m like, got it, no problem.
DANIELLE: (laughs softly)
REBECCA: And then he’s like, so you see a donkey? And I’m like, yeah, it’s right here. I can zoom in; it’s got little hairs. Yeah. I was just doing it just now! But right, that’s how people with hyperphantasia will interact with the world.
DANIELLE: Thank you so much for explaining. I’m kind of more on the aphantasia scale and have a lot of trouble with visual anything, whether it’s imagining it or even seeing the thing and then recalling it later, so it’s really cool for me to hear how just, you know — It’s always cool to hear how other brains work,, right? Other people process the world, experience the world differently than us. I think it’s always really cool anyway. And I’ve always been sort of — I get jealous and envy confused. But the one where I don’t want you to not have it, but I wish I had it too, of being able to remember fine detail, right?
Because even if I think of the apple, it’s just a glob. It doesn’t really have color, it definitely doesn’t have juice. It’s kind of just vaguely roundish. Like I can give it color, but the more detail I ascribe to it in some places, the less it loses detail — Like it can only hold so much detail, and then the whole thing starts to collapse (laughs). But I’m very good at other things. So it’s really cool for me personally, and I’m sure for lots of folks listening, too. Some folks will have recognized themselves in your description, I’m sure.
And also, it’s just so interesting to me that there’s such a range in human experience in this way. And one of the things I also really loved about your — like I said, your illustrator did amazing — was it does offer somebody like me who doesn’t have a lot of that ability to generate visions or ideas in a visual capacity. Somebody like me can look at your book and be like, I see the universe, I see the flowers, I see the zebras. And it was really a really effective, like beautiful, but also a really effective, like, writing art tool of bringing me as a reader into what she’s experienced, which I just loved. It was effective on multiple different levels, and it was really cool.
REBECCA: Yeah! And also that is how the story follows, too, because it’s what will happen, too, to push into the fiction; it starts with her memories. Like, when she sits down and starts with a hyperphantasia, first, you see these memories that are strung together in a pattern, which pattern thinking is an autistic —
DANIELLE: Yep!
REBECCA: …trait as well. And so she has the sun, the moon, and the stars. And then she’s like, “Okay, the sun, the moon, and the stars, and then what?” right? And then she can go into her fictions after that. But yeah, it was — To depict hyperphantasia, I wanted to show, again, what the experience was. What it’s like whenever you’re inside of my head. And it’s kind of — right? It’s got its little swirly nonsense that it does. Based upon facts, it’s like fact one, fact two, fact three, and go!
DANIELLE: Generate, yeah.
REBECCA: And that’s why I tried to find an artist who could depict the pictures, because that was such an important part, because, without that, I don’t feel like you can really understand the experience. Or for people who are interacting with somebody who is experiencing that dense of a filter, I feel like it gives more understanding to people to be like, hey, this little girl is in Lala land, so if you go and you touch her during that experience, it might be like, “(soft yell)” Right? Can you imagine?
Like an autistic child, you know, you can see whenever you touch them, sometimes there’s this like, “Oh, my gosh!” right? Because she was so immersed in this fantasy, the hyperphantasia, that there’s this disconnection from her body, what she’s doing, where she is.
DANIELLE: It was, like I said, such a depth of presentation in a very short book. It’s very impressive from a technical standpoint as well as, like, as somebody who read it and enjoyed it.
Advice for Parents Talking to Kids About Disability
I wondered about your perspective as a writer and a parent who’s created a book about an autistic kiddo. I get a lot of questions from parents around, how do I talk to my kids about their disabilities, right? And I have my own opinions, but I feel like every time I get another neurodivergent parent on here I ask that same question because I’m like, you know, I think a lot of people are wrangling with that and this idea that it has to be heavy again, right? Like, to go back to that. And I just wondered since I assume you’ve done a lot of thought work on this and just writing this book, how do you feel, or what’s your experience of talking to kids about either their own disabilities or your disabilities as a parent?
REBECCA: So, with my kids, generally, I try to focus on what they are good at and then whenever it comes to the harder things, we’re always focused on, let’s get some resources, let’s find the tools because we can work through this moment. A thing for me as a parent that helped a lot was relaxing, especially as a hyperphantasic person — Like, my brain was going, “Doom and gloom!” Over and over. It kept saying like, “Oh, no! Oh, no!” Right? And I could picture terrible things happening, and then it was not helpful because, one, none of those things are going to be the things that happen (laughs), right? And so —
DANIELLE: You can never predict the actual thing that happens, yeah (laughs). You just need to focus forward. Yeah.
REBECCA: No. Especially, there would be things that were going on when they’re two and three, and I’m like, “Ah! When they’re 40,” and those things are not even issues anymore. And so basically, all along the way, I feel like I was wrong in my projections. And that helped me start to project better things, right? Because now, instead of projecting negative thoughts, I project positive thoughts. I’m like, no, we’re working on things, we have the tools, we know what these things are, and as we find more problems, we address them, we get the resources we need. We’re going to handle this, we’re going to go into the future as best we can. And every day is going to —
Like, I still have to deal with my stuff every day. Not every day is perfect, and I have to sit there and be like — You know, like, I’ll forget my headphones, and it’ll get too loud, and I’m like, “Ah! Stop!” (laughs) Right? And then I have to be like, “I’m sorry for yelling. I know that nothing y’all were doing would result in yelling. I didn’t have my headphones. That’s a me thing.” Right? And so they see an adult who’s taking accountability for whenever my behavior isn’t what I wish it would have been.
And the next time, my headphones are there because I put them there because I did do the thing that I said that I would do. And so I feel like they’re learning how to not just take care of themselves but to be accountable and to keep growing. Like, I’m 40 and one and still growing. And so I hope my kids just grow through it all, and whenever a problem comes up, think, “I can find resources for this. I can find a way around this. I can work with this.” And then it becomes more about what they can do —
Like writing, producing is one of my greatest abilities, right? And producing art is one of my greatest abilities. And so I can focus now more on, I’m a writer, I’m an artist, and my hope that my children, whenever they come about someday, don’t try to — Like, I can’t I be a gymnast. You know?
DANIELLE: (laughs softly)
REBECCA: (laughs softly) There’s a bunch of things that I can’t do, but my life isn’t about those things. Those are left to other people, and I can focus my life on what I’m good at and then get resources for the things I struggle with. And honestly, it’s made life much more relaxed.
I feel like I can relax around things instead of having this just tight fist. I’m like, “Oh, no! I’m so worried!” I’m not very worried anymore. I feel like as things come up, we address them, and everyone seems to be doing really well. They report back that they are feeling happy. Like, you know. My children actually talk about — Like, they make homemade cards, and I got one from the 16-year-old this year for my birthday that was like, “Thanks for always being there for me,” and I was like, you know, yay. I’m glad that that’s the experience. And, you know, I feel like just relaxing. The only issue that is even in existence is whatever you’re facing right now, and once that’s over, just enjoy it (laughs softly).
DANIELLE: Yeah. Yeah.
REBECCA: Relax and feel comfortable because it’s only that one little problem. It’s not whatever your brain might tell you it is. It’s just right there, and then just enjoy the rest.
Disabled Parents Modeling Self-Care for Disabled Children
DANIELLE: I think you’re so right that — Your point that the issues that my kids experienced when they were two are not what they’re experiencing now, even at 10, which is not that much time, right? So you put all this effort and try to control what the outcome is going to be when they’re two, it doesn’t even matter later. So like, I wish I would have relaxed. Now I think I’m more relaxed, but when they were younger, absolutely not.
I also loved this modeling accountability, like you said, but also modeling that sometimes we’re going to need our accommodations or our supports or our resources like you said, and we’re going to be responsible for finding those and organizing those or asking for help if we need help, right? But that accountability piece of, yes, I am experiencing a challenge, and yes, I’m going to, kind of, solve it, right? I feel like so many parents are — Or I hear also, that so many parents are worried about not appearing vulnerable in front of their children.
Like, yeah, I’m somebody who gets overwhelmed. I need to take breaks in my room. I need to close the door. I need to sit in my music or my headphones for a little while sometimes. And I feel like that can be judged as being a bad parent who is not there 100% of the time. But it’s also like, no, I’m modeling to my kids that they’re allowed to take breaks and listen to their music and put their headphones on. But I feel like a lot of folks are worried about being judged for that as opposed to taking what you need to feel better, to make you a better parent so that you can be there for your kids more in the future, so I really appreciated that aspect.
REBECCA: Yeah, I used to worry, too, about being judged. And then I got to the point where I don’t actually want anybody who would judge me for that in my life. I don’t need that kind of judgment and if somebody is — You know, like the perfectionism of all of that, honestly, I think, does more harm than good because I want my kids to be able to grow. And I think that just declaring ourselves perfect and all this stuff and not working on ourselves and working with what every single moment what our needs are, I think that could be really dangerous, and so I want my children to be able to advocate for themselves and know what they need and interact with themselves in a way that’s honest (laughs). And I don’t feel like they’d get that if we were just ignoring our needs.
I make it a point to, especially in moments that are hard to talk, because I don’t want them to just grow up and be like, “Oh, that time mom la la la,” (laughs) because there is no conversation over it and also no accountability so that the next step would be a better up than the previous one.
My kids also have their needs, too, so they can communicate, “I need to be in my room with my music.” Okay, yes, right? And let’s figure out a time that you’re going to come back because we need to get X, Y, Z done (laughs).
DANIELLE: Yeah! I also do that kind of direct planning with even my younger kids. And I think people would like to believe sometimes that kids are less able than they actually are. Even disabled kids can do lots of things. Yeah, so, like checking in and saying, “Can I come back in 10 minutes?” Or, “Can you come back down in an hour?” Or, “Let me know. Text me if you can’t so we can do this later,” right? I can reschedule it for us, whatever. Yeah, that’s really great.
REBECCA: Yeah, and I’ll check in, too, especially if there was like a really high intensity to the overwhelm, then I’ll just go and do a gentle knock and check in and be like, “How are things?” You know, just to see. Because I don’t want to put a timeline on that (laughs). You know —
DANIELLE: It takes what it takes.
REBECCA: I don’t know where things are. But also, whenever I go and make that check-in, just being checked in on changes things by itself, right? Because it went from, “I am in my room, I am alone,” to, “I am being checked on by somebody who cares about me, and somebody who respects me, and somebody I can say, ‘No, I’m not ready yet.'” And I’ll just be like, “Okay, I’ll check again later.”
DANIELLE: And you’ll actually to leave and not push it. Yeah, I think it makes a big difference. Thank you so much, Rebecca! I’m really glad you were able to come in and talk to us today. Can you tell folks a little bit more about where they can find Eliza Dee’s Universes?
REBECCA: Yeah! Right now, the only place that I would suggest is Amazon, but it’s all over the place, Books-A-Million and Barnes & Noble, all the different places that books are sold, you can get it through there, but the fastest way and a way that I love the way it comes out, the art is gorgeous, is through Amazon. They have that all over the world, all the different Amazon.uk and Germany and all the different ones. But soon, I’ll have my own author copies, and at that time, they’ll be able to get them through my website, and I’ll probably have some discounts available in the future. Not sure when that’s going to happen, though, because there’s a hang up on the whole process. So, right now, Amazon is definitely the place to go.
DANIELLE: Publishing is complicated. But thank you so much. I’ll put a link, folks, to Rebecca’s website and also an Amazon link to the book below if you’re interested. It really is a gorgeous piece, and you should go check it out. Maybe you have a kiddo in your life who needs, like, a birthday present or something coming up. Just go have a look. Thanks so much —
REBECCA: Oh, I have one thing! One thing I would add —
DANIELLE: Yes, please! Please, please.
Advice for Parents with Children with POTS
REBECCA: …for POTS. For POTS, as a child, I was made to stand in lines, and I would get in trouble because I was trying to walk, but that was because I was trying to get blood up to my head. Children with POTS, their blood will pool in their legs, so their heart starts to beat really quickly to try to get the blood up to the brain for oxygen to the brain, and so standing in line, that is something we need some more resources around or accommodations for for kids who need to be moving to keep the blood going to their head because their behavior will suffer once their brain has been deprived of oxygen, and that is not a kid who’s doing anything wrong by both trying to walk while in line and then later on the after-effects of having lost the oxygen to their brain.
DANIELLE: Yeah. Thank you for saying so. I need to do an episode on POTS because it is such a common issue, and I think so many kids struggle with underdiagnosis, right? Or misdiagnosis, so I really appreciate that.
REBECCA: Thanks for having me; I had a good time. And thanks for letting me talk about all these conditions because the more people know, the more they can get the resources they need and the services they need to live the best life possible.
DANIELLE: Thanks so much for joining us today on The Neurodiverging Podcast. I hope this was helpful for you. If it is, please go check out Rebecca’s website at RebeccaVistmun.com. I’ll put it down below. Then, ask your library about or go to the bookstore and ask about Eliza Dee’s Universes, which is now out.
If you like this podcast, please don’t forget to like and subscribe to us on your podcast app. And please remember, we’re all in this together.