Rebecca Vitsmun
Valerie Anne: Hi, welcome to Special Needs Moms Circle of Strength, the podcast where we shine a spotlight on the incredible journey of moms who are raising children with special needs. I'm your host, Valerie, and I'm honored to bring you to a place where the voices of these amazing moms can be heard through a collection of narratives that embody resilience, hope, and strength.
Whether you're a parent, a family member, a caregiver, a friend, or simply someone seeking to learn, Join us as we embark on this journey of love and connection. Get ready to be uplifted, enlightened, and inspired. This is Special Needs Moms Circle of Strength. I'm Valerie, and I'm so thrilled you've chosen to be a part of our circle.
Hi, Coach Valerie here, introducing our guest, Rebecca Vitsmun. Rebecca has been living with Ehlers Danlos Syndrome, and she talks to us about what life was like with that, and what it could have been like if people had known about her diagnosis, and she showcases that in her book. Hey, join us.
Welcome to Special Needs Mom's Circle of Strength podcast. Our guest today is Rebecca Vitsmun, an autistic author living with hypermobile Ehlers Danlos syndrome and congenital stationary night blindness. Rebecca graduated from the University of Louisiana at Lafayette with a bachelor's in art and humanities in 2005.
In 2015, Rebecca was awarded the Humanist Visionary Award for envisioning the first National Humanist Disaster Recovery Volunteer Program, the Humanist Disaster Recovery Teams. In 2016, she was awarded The Atheist Impact Award for developing the aforementioned program. Rebecca is the Secretary of the Board of Lyme TV Lobby with Center for Lyme Action and volunteers through many local organizations.
Rebecca lives in Tacoma with her husband and their five children, two cats and a leopard gecko. Sounds like a busy household. Welcome. Welcome, Rebecca. Yes.
Rebecca Vitsmun: Thank you. All right. Well, I like to say that we live in a zoo.
Valerie Anne: It sounds like it. It sounds like it with five children. Now you were just saying at our preamble that you don't have all five children all of the time. So that must help things along a little bit.
Rebecca Vitsmun: A little. Yeah. Four of the children we share with previous spouses. So we don't have five kids inside of the house all the time. I didn't have to go through five pregnancies or five births, but I get to love five children. Nice. I love more children than that, but I get to be a parent to five children.
Valerie Anne: Neat. Neat. Awesome. Awesome. So I usually ask all my guests this question, what's one unique thing about you?
Rebecca Vitsmun: So I would say that a unique thing about me, people, something people would never expect is that my nose was broken for 35 years and I never thought that it was something I should tell anybody about, ‘cause I just thought that's what heads felt like.
Valerie Anne: Wow.
Rebecca Vitsmun: Yeah, it was bone on bone pain in the middle of my head and I just thought that's what everyone was experiencing. Nothing going on here. If you asked me how I was doing with a smile, I'd be like, I'm doing great.
Valerie Anne: I would say that's probably the most unique thing I've heard to date.
Rebecca Vitsmun: It's pretty unique.
Valerie Anne: Totally. Totally. All right. So tell us a little bit about your special needs mom journey.
Rebecca Vitsmun: Sure. So I, I'm a special needs person. Uh, growing up, I, I had a lot of different complications. My mom took me to doctors all the time back in the eighties. They didn't have the right information. So I didn't get a lot of help.
But after my son was born, it was only a day or two before there was clearly something going on. We were having like his, Movements were not looking like it didn't seem correct. And so we started on this journey of trying to figure out his GI issues. It took 15 months to figure out that it was citric acid.
You know, like he had trouble with growth. He's always had trouble with growth underneath the growth curve, even to this day, but. From 6 months to 12 months, he actually lost weight. It was a terrifying time, and it just kind of set the stage for, you know, rolling with it. As we run into more challenges, you know, there's been physical therapy, occupational therapy therapy, just talk therapy along the way.
And as you know, married my spouse, he came along with three kids, they all have neurodivergences and learning their needs and supporting them and their journey and their growth is just a part of my daily life.
Valerie Anne: Wow. Wow. That sounds a lot to be dealing with. So I'm just curious, Rebecca, you mentioned that you're neurodivergent yourself, and so now you have a family of neurodivergents. How has that been for you? Um, Yeah.
Rebecca Vitsmun: You know, it's fun. It's spicy. We like to use that word, you know, because every day and maybe even kind of moment to moment, you really don't know what's coming up next. Like, everything could be fine right now and not fine in a minute, but then fine again 10 minutes after that.
And just learning how to relax and, you know, at first, it was a struggle, but over time, it's since, it's just kind of day in and day out for everyone, including myself. We've gotten to have more fun with it, I think, and we've relaxed a lot and everybody's more comfortable with themselves.
Awesome.
You know, I feel like as far as like a healing journey, it's kind of like one of those.
And how old are the children now?
16, 14, newly 14 as of Monday. Yay. 12, 10 and three.
Valerie Anne: Wow. That is busy. That is busy. And those teenage years with the hormones, the developmental stages, the executive functioning and all of that kind of stuff.
All piled onto one. Ooh, yeah, that is a busy, that is busy, but kudos to you for taking that on. And I love the fact that you are making it fun, right? You’re just rolling with it. This is our life. Let's enjoy it because we only have one life. Awesome. Okay. So I have a question and I just want to know what your take is. What does it mean to have a hidden disability?
Rebecca Vitsmun: Sure. So when you think about disabilities, often people picture someone with a wheelchair or an amputee, like something you can look at somebody and say, that person is disabled. But there are a lot of conditions that don't show up in your presentation.
They're either internal, like I have a connective tissue disorder. If you look at me, I am standing there and I look like a normal person. I don't look like somebody who could injure themselves barely moving, but it happens. Frequently, I could dislocate a rib from rolling over in bed and you can't see that from just looking at me.
And also there are mental conditions that you can't see. There's a lot of like different ones and personality disorders and all these other things that if you look at somebody, you can't see it, but it affects every moment of that person's life. And there's these differences that need to be accommodated for that person that like, if you just put people side by side and said, are any of these people disabled? They're not going to stand out, but they still need significant accommodations. Right.
Valerie Anne: My youngest is now 19 and struggling with the workplace and trying to find accommodations in the workplace. They're just finishing up high school right now and just trying to find a part time job. We had a situation where their first job was a summer job working at a hotel.
And when you look at my child, the same thing, you would never know there was something and it's only as you spend time with them in conversation. And just if you're observing their movements and their type of speech, the things that they're talking about, those are the keys and the clues to whether there's a hidden disability.
Plus, I'm sure there's lots more. My child was going to work at this hotel doing…I’m from England, we call it chamber maiding, taking care of the rooms, and I didn't realize at the time, but they had been moved from doing the rooms to the laundry for some of the time that they had their shift.
And it wasn't until after I started putting the pieces together, that I realized, oh, they probably didn't do the job fast enough or well enough, because I think there was a time frame that the rooms needed to be done in. And so they moved my child to a job where nobody else had to depend on them. They were in the laundry. They could put their headphones on. They could do their own work. And so, I think without realizing they did accommodate my child, but we didn't understand what was going on until later. But I know now that my child understands and now they're able to advocate for the work accommodation so that they can work and be contributing to society and also earn an income.
So, Rebecca, you mentioned something about allyship when we were chatting earlier, and I don't really know. I want you to give me a definition of that and what that means to you, practicing allyship.
Rebecca Vitsmun: So yeah, allyship is something my children have been learning this in school. And it's something that, you know, I learned through my kids. They went to allies in action in their elementary school. And so what it is, is about how to like, start to build a society where we're incorporating everybody. We're not just like, Oh, you're different, so we're going to cast you aside, or we're not going to figure this problem out. Instead, allyship is saying, Hey, there's this person in our community who's different. How can we incorporate their differences into our group? And so that is exactly what happened with your child. They're finding a role for them rather than saying, you're fired because you can't do this job. Instead saying, Hey, what can you do? Great. We're going to put you right here and we'll move somebody who can do that job into that position.
By creating these roles, creating these positions that make up for the people who are in your group, that's allyship.
Valerie Anne: Mm hmm. I love the fact that they start that in elementary school. So this is a new concept for me. And so I'm just curious, is this sort of teacher-led where we include the children and have them? Is that how that works?
Rebecca Vitsmun: Yeah, it was teacher-led, but the kids would practice, you know, like, figuring out, like, what everybody was good at, and then, like, finding a way for them to interact with each other, and figure out who each other were, so that they could, you know, form relationships. They wouldn't naturally, you form without that, you know, incorporating those ideas into how they interacted.
Mm-Hmm. . So is this a structured program that any school can get their hands on?
You know it was under purple umbrella and, Mm-Hmm, I'm not sure if, uh, I know that the woman who was running it is now a school board member. In Tacoma public schools. And so she was the one running the program at the time.
I'm not sure if her purple umbrella, my purple umbrella.org, I believe is the website still has the the stuff, but it could be. I don't know why she would take it down, but you never know.
Valerie Anne: It's certainly worth checking out though. And I know for myself with my youngest, they have Autism, which was diagnosed just 2 years ago, they're now 19, but they were diagnosed with ADHD when they were probably around grade 5, grade 6, but I noticed there was something going on with this child, because I remember thinking, they are not getting invited to birthday parties.
So the social awkwardness, even though they were exuberant and they did a lot of masking, which I didn't know what masking was because I didn't realize that they were on the spectrum, so they did a lot of masking and watching other people and trying to mimic how their peers. We're acting and so it was interesting to sort of watch that development and I wish that they had had something like that allyship because as they got older, it became more apparent that they didn't necessarily fit in. And so they were being excluded and people didn't want to do projects with them because school nowadays is all sort of, you know, group based projects and doing things together. And it's hard when nobody wants to do something with you. And so it would have been great for my child to have experienced that inclusion had this school had that program.
Yeah, I think it was very groundbreaking.
Valerie Anne: Yeah. Yeah. And I do believe that it's something that all classrooms can certainly benefit from.
And I get it. That teachers must be exhausted in classrooms. The classroom sizes with the children are huge and just trying to meet the needs of all the children. And they’re so diverse, all the needs. I can't imagine trying to accommodate all of the children. But that said, something needs to happen for these kids to have the best experience, educational experience.
So thank you for sharing about the allyship. And that's something that I'm going to be checking out, even though my children are done from school now, but a good friend of mine is a kindergarten teacher at the school that my child went to. And, she has talked about buddy programs, you know, and teaching the kindergartners to look out for, you know, if there's somebody by themselves, then go over and say hello, invite them to come and join you, and sort of just really trying to foster that spirit of inclusivity and making sure that no one's left out.
Rebecca Vitsmun: Oh, yeah, they did. They put a bench at the playground, the ally bench. And it was like, if you needed somebody to play with, you could go to the ally bench and then somebody would come and play with you. That was kind of a thing that that program had done as well.
Valerie Anne: Right, right. And that's starting to ring a bell for me now because I remember my friend doing something along those lines that there was a seat somewhere for kids if they needed a friend. Yeah, love that. Okay. So tell me, how is your role, Rebecca, as a parent of neurodivergent children influenced your own personal aspirations and goals?
Rebecca Vitsmun: Well, you know, as I am helping my children navigate all these things, I'm also helping myself to navigate them as well because, you know, like I said, I grew up, we didn't have the resources.
We didn't have the names. I, the criteria that caught me for Ehlers Danlos syndrome wasn't even developed till 2017. So my children get to watch me working on myself as an adult, but I feel like it really shows them like, you know, you're never quite done working on yourself. Like, there's always more to learn, there's always more that you can do, and there's always times where I might screw up too.
Like, or I behave, like, maybe I got too overwhelmed with the noise, and I'm like, ah, stop! That happens, and then I'm like, next time I need to have my headphones closer so that I can put them on. It wasn't you guys. I wasn't taking care of my needs properly, but they can see that. And that has helped them to express themselves as well. And to kind of set the tone of growth. Like, you know, here's this action that I'll take in the future so that this circumstance doesn't come up again and they've watched me through the years, you know, build on that, and take myself seriously and put those things into place and continue forward.
And, you know, I've watched them do the same and I feel like it's setting them up for not expecting perfection, but being able to, like roll with it and grow and add things. And, you know, if there's setbacks, yeah. They're, always temporary. It's always a temporary setback and then more growth.
And so I feel like seeing that in me and, you know, feeling it themselves, they're set up for a future where they can continue once they leave the home.
Valerie Anne: It sounds like you're, made a great effort to normalize growth and self development, self improvement. And it's a thing that can go on for a lifetime. We don't stop growing, learning, developing, becoming the best human that we can be. So I love that you've normalized that in your household and normalizing it then makes it okay to talk about when things are not going well, because they know that they have someone that gets it. And that's important. Okay, so Rebecca, something exciting really recently happened for you. Tell us about it.
Rebecca Vitsmun: Yes, I published this book. It's a Eliza Dees universes. It's a children's book. I, it came about because I was sitting next to, she's 16 now, but she was 14 at the time, and we were talking about college because she's, you know, she's thinking about college and we're having that conversation.
I said, oh, yeah, I have a degree. You know, it's in humanities, which is like writing. And she said. I've never read anything you've written. And I felt so like, oh, it was a stab in my heart, you know, like, oh, I, how did I become an adult with children? And, they haven't read anything I've written, but I thought about it.
And I only have written things that are really for adults. You know, I even checked in, you don't want to read a paper on collectivism versus individualism. Right? And she's like, that's not and I was like, okay, well, I'll write something for you. I'll write something for my kids to read and I set on that path and I write away.
I knew kind of like the concept because I've been working with a similar concept for 15 years, you know, at that point, but I had never really written a character. Everything I had written before was, you know, just abstract conceptualizations of things. And so, I started to research how to write a character and it said, write what you know. And I thought, okay, what do I know? And I thought, Autism, Ehlers Danlos Syndrome, you know, like all these things. I was like, oh no, my little girl, my little character has to go through all of that? But then whenever I started to write with her, it was like, she already knew as a child, like her parents knew they had the support.
It wasn't like my upbringing where we didn't know anything and they kept trying to slather creams on me that didn't work because Ehlers Danlos affects your skin. And so I had lots of skin issues that now I know what to do, but at the time it was very painful. But so I got to write a character that was like me and how this character has my diagnoses, but, you know, is being cared for by her family.
And so she gets to instead engage in the things where it's her strengths, right? And it's her different strengths. I specifically decided that I'd write a character where it was showcasing like her abilities that other people don't generally have, and it gives her time to shine.
Valerie Anne: Wow. Wow. I just want to give a shout out to your illustrator, Victoria Miki. She did an awesome job. And I just want to say I love the theme purple and the different purples that were used throughout your book. That's my favorite color or one of my favorites, blue is my favorite.
Rebecca Vitsmun: Yeah. I went to look for an illustrator. And I looked through 20, it was 200 different profiles and like our pitches that people made and then hers just stood out and I was like, you're this is, this is it.
Because I was trying to have somebody who was capable of, you know, illustrating these images that are just in my head as an autistic person with the conditions that I have and the way that it goes around in there. I was like, I have to find somebody who can capture this and I just knew she would be able to. And she did. She did an amazing job.
Valerie Anne: Totally. Totally. So shout out Victoria. Yay. So Eliza Dee is. basically, you as a little child, but the story was different. As I heard you, her parents understood what was going on, so were able to provide what she needed. So what was it that she needed?
Rebecca Vitsmun: So like my son, right? Her GI issues would have started. Immediately, but her parents would have known that that was coming. Like for my son, it took us 15 months to figure out what was going on. It was citric acid and to avoid it. But for her, her parents would know right away and be able to pinpoint what her, it's mast cell activation syndrome.
Many people with Ehlers Danlos syndrome have this comorbid condition. And so right away it'd be like, okay, she's having these GI issues because she has EDS. Let's pinpoint the triggers and, you know, eliminate those, right?
And so, you know, there would be that. And then later on, physical therapy is a big deal because there's proprioception.
That's the ability to sense where you are in space. That's a permanent. And people with EDS, so not really understanding where your components are. So you don't stand properly. You don't walk correctly. Like there's a, you don't sit correctly. Like, because you don't have a sense of where your body is. I have a memory when I was in ballet, when a teacher came up to me and she's like, can you do that again? And then I did it. And she's like, can you do it where you're like up and down? I know, like, she's having me plie and I'm supposed to do it straight. And I thought that I was, and then I was like, Okay, and I did it again. She's like, no, you're not doing it. And then she put her arms on both sides of the inside. Can you do it again and not hit my arms? And then I did it again, but I hit her arm and I was surprised. And she's like, can you even feel your body? And I remember just scratching my head and looking at her. I didn't want to say I didn't understand the question. Right. And now in retrospect, the answer was no.
Because there's not only proprioception issues, but there's also interoception issues and that's the ability to feel your body's signals. So like tired, hungry, need to go to the bathroom. Everything is always once it's dire urgency before the signal gets through because of how deep the autistic filter is.
And so, right? So there were all these issues that if I had that information, and if I had the ability to go to occupational therapy or physical therapy, when I was younger, I wouldn't have had the issues that I have had as I'm older, because now my body is kind of falling apart because we didn't know.
And so I, I bent myself into every single shape that there is because contortionism is a symptom of Ehlers Danlos syndrome. But, you know, Eliza Dee's parents would have said, Hey, make sure like, here's the range of motion that's safe. Don't go beyond that, even though you can, because you'll feel that later in life.
Yes. Like I've said to my son, and so he knows not to, so he's not going to be suffering the way that I am in my thirties and forties, you know? And so this information, having it and being able to grow with it, frees you up to be able to have just the benefits, right? The extra abilities instead of just the disabilities that come from the not knowing, not having a diagnosis, not being able to get the right resources and services.
Valerie Anne: Well, thank you for sharing that. I didn't realize that the hyper mobility part of it. And to be honest, this is sort of a fairly new diagnosis for me hearing about it. So thank you so much for taking the time to show us what it looks like and what early intervention can prevent for later on in life.
I work as a physical therapist. I've been a physical therapist for many, many years. So I can kind of relate to the proprioception and, you know, the hypermobility and. Paying for it later in life, because I work with construction workers that have thrown, you know, big heavy things around for years and years. And when people are young, they don't realize, they don't think about what's going to come in the future. So thank you for sharing that. And so now at this stage in your life, is there help for you?
Rebecca Vitsmun: Oh, yeah, I'm in physical therapy. I've been in 10 different times and I have various doctors. You know, I, I have a cardiologist and a rheumatologist and, you know, all these basically Ehlers Danlos syndrome, connective tissue disorder.
Connective tissues all over your body. It's your skin. 80 percent of your eyes is connective tissue. It surrounds every organ. Every single time that something touches another thing, connective tissue is involved. And so it's multisystemic and having doctors understand what it is and whenever something else comes along and you have an issue, having another doctor lined up is very important. So, yeah, I have a care team and they all work together through my primary care physician who is supportive and understanding, which is very nice because that's not always the case. There's still some who still don't understand what a connective tissue disorder is.
And, there's some horror stories out there from people getting gas lit for many, many years until they finally get the correct diagnosis and they needed all of that help that they were seeking for all of those years. Yeah.
And things are changing. It's getting better. And also still the awareness needs to be there, especially for doctors.
Valerie Anne: Well, I love that you've taken on writing a book about it so that children can understand. That yes, this is an issue for some children.
Is there a large percentage of children that have this?
Rebecca Vitsmun: You know, it's impossible right now, I think, to really understand the scope because the criteria used to diagnose Doesn't really kick in until you're falling apart. And so a lot of people are finding out in their 30s.
Oh, wow.
Rebecca Vitsmun: You know, because 2017 isn't very long ago and the criteria involves like multiple dislocations. So you're not going to have that until you're older.
Yes.
And, and that's very unfortunate, but, you know, they're trying their best to have a foundation. But it's a 50-50 chance for somebody who has it for their Children to have it and it runs in families. It's genetic disorder. 50 percent chance is pretty high. And so it's pretty easy to understand. Like, I look at my two kids, one of them has a lot of symptoms and then the other has none at all. So it's like really easy to say, okay, this child, it's not normal.
Definitely doesn't have it because, you know, so quickly and so I don't think that there's actually a number for children yet, because right now they're focusing on diagnosing the adults and then it's the adults who are pointing at their kids and going like, oh, oh, okay.
Valerie Anne: Yeah. Yeah. Wow. Okay. Well, thank you for doing the book, creating more awareness.Where can our audience go to find your book?
Rebecca Vitsmun: Right now the best place is Amazon. Eventually I'm going to have it on my own website once I have my own copies and things like that. But for now, definitely Amazon is the best place to go. And it's all over the world too. So like wherever you might live that your local Amazon.
Valerie Anne: Yes. Great. Thank you so much. And we will have the link for that in the show notes. So where can our audience go to find more about you?
Rebecca Vitsmun: Rebeccavitzmun.com I have my own website and I can also be found on most of the social medias, Facebook, Instagram, LinkedIn, wherever you are, might be there too. Okay.
Valerie Anne: All right. So before we conclude our conversation, Rebecca, and it's been lovely to have you as a guest today. I want to hear some words of encouragement from you to other moms and parents who are raising children with disabilities. What message of support would you like to offer them?
Rebecca Vitsmun: I'd say the thing that helped me the most is relax, right? Try to relax as much as you can. Take the bath. You know, take a breather. Almost every single, you know, I used to swirl and swirl with negative thoughts, projections of the future. And it was always like, Oh, doom and gloom at first, until I started to realize one, all of these negative thoughts, none of them are going to end up the way that I think I'm not preparing for anything. That's really going to happen. Probably the things that would go wrong or things I can't even foresee. And so letting go of the worries. Has helped me a lot in just dealing with right now. And if right now is good, enjoy the good. And if right now is hard, just get through that one hard back to the good and then keep going.
Yeah. And I feel like that has really helped me relax and enjoy my life. And, and that's the same for my kids too. We're all living better lives now that it's like just this tiny spot. We're going to work on that. Yay. We worked on it. Yay. Back to good.
Valerie Anne: Yes. And it sounds like you do a lot of celebrating in your house. So thank you so much for sharing. I really appreciate that. Well, Rebecca, it's been a pleasure. Thank you so much for taking the time to come and talk to us and share with us and all the best with the promotion of your book and. Yes. As I mentioned earlier, it will be in the show notes, the link. So grab your copy.
Thanks again, Rebecca.
Rebecca Vitsmun: Yeah. Thanks for having me.
Valerie Anne: You're welcome. You're welcome. So audience remember to live with intention, embrace the journey. One more thing. If you're listening to this on Buzzsprout, my podcast host, then check out the new fan mail feature and make sure that you send me a text. Ask me a question.
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