An NVLD Experience: A Talk with Carolyn Sophia Skowron

Carolyn Skowron discusses her lived experience with Nonverbal Learning Disability, which can impact visual-spatial abilities and social abilities. Carolyn shares advice, talks about the obstacles and social-emotional challenges that those with NVLD face, and more!

Visit Carolyn’s website: https://www.carolynsophia.com/unbreakable 

Transcript

Lauren Clouser:

Welcome to the LDA Podcast, a series by the Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents, and professionals to work towards our goal of creating a more equitable world. 

Hi everyone, welcome to the LDA Podcast. I'm here today with Carolyn Sophia Skowron, a speaker and author, here to talk to us about her lived experience with nonverbal learning disability. Carolyn, thank you so much for being here today.

Carolyn Sophia Skowron:

Thank you so much for having me.

Lauren Clouser:

So to kick us off, would you mind telling us about yourself?

Carolyn Sophia Skowron:

Yes. So I'm born and raised in Pittsburgh, Pennsylvania. I am so appreciative and grateful to have the best family and amazing sister. And growing up, I always felt kind of like I never really fit in. And it kind of took years later to figure out a little bit more of what that reason looked like. And I know we'll talk more about it. But I love cats and dogs, love animals, and I’m just happy to be here.

Lauren Clouser:

Well, we're so excited to have you, and thank you so much for coming on to share your experience. So to start off, what are some things that you wish people knew about NVLD? It's not as well known as, maybe, dyslexia. So what are some things that people often get wrong that you would just like to get the word out there about?

Carolyn Sophia Skowron:

You know, I think with NVLD, you can't see it conceptually by just looking at someone, being like, oh, they have NVLD, or, just being in the classroom, you can't necessarily tell. But, you know, the way that we understand, in comprehension, the way that we understand our nonverbal skills and spatial awareness. 

Especially for me, when I was growing up and learning how to drive, I always wondered: why am I struggling so much more at this parallel parking than someone else? And once I got my diagnosis, it kind of made more sense. You do struggle with spatial awareness. And I'm 28 now, and it's still something I struggle with, but it's definitely something I'm more aware about, which is very helpful. 

So I think really the main thing is just understanding that it's a difference and it doesn't make you any less than a person. And even though it's not, like dyslexia, and you can't see it, it's still something that can very much affect you cognitively and the way that you just see everyday life.

Lauren Clouser:

Yeah, absolutely. Well, I wanted to talk about your experience with growing up with NVLD, maybe before you got your diagnosis. How was that experience for you growing up?

Carolyn Sophia Skowron:

School especially, it was very hard for me. I always really struggled with math and science and was a little bit better at reading, but still struggled with comprehension. 

And as I got older, I had so many tutors for different subjects, and I was always working 10 times harder than anyone else I would see in the classroom. For me, it'd be like 4 or 3 hours a night. For someone else, it might be like an hour. And so I was always kind of, why is this not adding up? I'm working really hard, and why are the results not showing? 

And so from that young age, I always kind of had this feeling of like, why is everything so much harder for me? Why am I struggling so hard to understand something that’s maybe basic to someone else? And for me, I'm making it like 10 times more complicated in my own brain. And I always really struggled with internalization and not fitting in socially. So that was something that I really kind of saw from a young age of just kind of not fitting in.

I mean, from getting a death threat in third grade to just getting bullied as I got older and everything, just wondering why people don't like me, why I'm not fitting in, and just every single day constantly internalizing every look or every word as a sign of rejection or not fitting in.

Lauren Clouser:

I’m sorry you had to go through that. That's a lot to deal with at that age.

Carolyn Sophia Skowron:

Yes, it was.

Lauren Clouser:

What age did you get diagnosed with NVLD?

Carolyn Sophia Skowron:

I was 16 when I was diagnosed. And the reason it took so long was, again, I said how I've always had a bunch of tutors for different subjects. I mean, there would be times where I'd have like 3 tutors come to my house a day. So once I got older, it kind of all started to make sense of things adding up, of not being able to keep up and everything like that.

Lauren Clouser:

That's something that we hear a lot too. I want to go back to what you said earlier about having to work 10 times harder than your peers. A lot of the time you're trying to compensate to keep up and it's working, but it's exhausting.

Carolyn Sophia Skowron:

Yeah.

Lauren Clouser:

So what was it like then when you got that diagnosis? Was it a big ‘aha’ moment for you? How did that impact your sense of identity?

Carolyn Sophia Skowron:

So when I got my diagnosis, I was a sophomore in high school. And I very much struggled in high school socially, academically, kind of all the above. And so I was struggling with depression, anxiety, and unfortunately, self-harm. This was later on in high school. 

But I had this feeling of like, I already feel different and now people are going to treat me even more. I'm going to be honest, when I first found out, I was like, does this mean I'm stupid? I didn't really know exactly how to comprehend it except for the fact that I was like, I'm stupid, I'm a failure, I'm not enough, I'm never going to fit in, people are never going to like me. You know, that was kind of the rabbit hole that first happened when I first found out that I had this diagnosis. But now that it's been almost 15 years, I see it in such a different way.

And now I see it as more of trying to be an advocate as much as I can to help other people who do find out that they have this diagnosis, that like, okay, I'm not alone here. I'm not stupid. I still am amazing. I have different strengths. I just need to look at it like that. And I certainly did not at first. 

But, you know, one thing I wish I would have looked at more is okay, you have this diagnosis now. What are your strengths within having this diagnosis? Because everyone has strengths and weaknesses regardless if you have a disability or not. And I think it kind of just took a long time to frame it that way.

Lauren Clouser:

Yeah, definitely. Well, and what are some of those things that were able to get you to that point of acceptance that were able to help you develop that resilience, that self-knowledge?

Carolyn Sophia Skowron:

Well when I found out I had my diagnosis, I was not doing well. Like I said, emotionally or socially, or academically. And I ended up going to boarding school with kids for— everyone there had some sort of learning disability. Now, a couple people had nonverbal learning disability. Now, again, it wasn't as well known, but everyone there had a diagnosis. So you did kind of feel some sense of belonging, which was like, for the first time in my life, I was like, oh, people kind of understand it a little bit more. And so I didn't feel as alone because my peers all have some sort of disability themselves. So it was a very accepting place.

And I think that that was something that definitely helped me to start to see it as like, this is just part of who you are. This is not all of who you are. Everyone here is going to understand you in some better way than where I was at my public high school. I felt so misunderstood. And, you know, I was in remedial classes until we figured out this. And then I went to boarding school and all that. So I really think that boarding school was a huge thing of finding this sense of peace and identity and like, okay, this is part of who I am. And we're going to live with it and we're going to keep moving forward.

But I also think that the other thing too is, and something that I do now is, I am an advocate for the NVLD Project. And so I'm actually an ambassador for them. So it's really nice to kind of be connected in a different sort of way because I might not have had that person back then, but now I can be that person for someone else who is finding out they have this diagnosis. And instead of letting it ruin your life and letting you crumble, taking it as a point to kind of find what you are good at and to acknowledge that there are still things that you are good at. I mean, yes, there's a lot of weaknesses, but with that also comes some strengths.

Lauren Clouser:

Absolutely. And that's such important work, that advocacy work.

Carolyn Sophia Skowron:

Yes.

Lauren Clouser:

So that's just fantastic that you were able to take your own experiences and realize that you wanted to help others. Well, and I wanted to talk a little bit more too about your experience with NVLD in adulthood. We hear a lot about younger students who experience learning disabilities, but learning disabilities are lifelong. And so I was curious, what are some day-to-day challenges that you experience with NVLD?

Carolyn Sophia Skowron:

Yeah, I mean it's a lifelong thing and so it's kind of something you have to just kind of learn more about. I think one of the biggest things is learning about self-awareness, learning about when I am— and this is something that therapy has kind of helped with too, but knowing when I am starting to spiral or go down that internalization route and kind of be like, okay, maybe I can pivot this and do something else, try to take my mind off of it, or just kind of try to reevaluate the situation or whatever it is. 

But I think that one thing about NVLD is that I think when I was younger, I really didn't understand or I didn't feel like people really understood me. And so I always had friends come and go. So it was never really anything solid. But the more that I am into adulthood and the more that I have found people that accept me and love me for who I am, the more that I understand that it was never me. It was just not having the right support people around me. And so back then it was like friends that lasted for a month, and now it's like friends that have lasted for years.

And so I think that also understanding that friends can be hard with NVLD because you have to kind of make sure that people understand you. I mean, I've told some of my best friends before, like, listen, I might ask you more about this situation, but that's because I feel like you telling me more makes me feel like you trust me more and confide in me more. So I'm not trying to…like some things that people with NVLD sometimes do is we might ask a question more or be a little bit more nosy, but it's not anything intentional. It's more just kind of this sense of feeling like, oh, I belong, or people hear me and understand me and want me around kind of thing. And so it is really nice having friends that do accept me for that, because I think that that is something that I've had to learn through adulthood really, and just throughout college and high school and all of that. So that is definitely a big thing for sure. 

And I think another thing with NVLD and adulthood is also like not getting yourself wrapped up in if someone doesn't respond to a text, or if you're like, basically not making these assumptions that people are mad at you, or, people don't like you, or whatever. And that's a constant battle that I struggle with, but it's something that, as I said before, being self-aware helps with this diagnosis more.

And so when I know that I'm doing that or know when I'm like, oh, why isn't that person responding to me? Or are my friends mad at me? It's like, no, everyone has their own things that they're going through and not everything is personal. And I've learned that a lot more as I've gotten older.

Lauren Clouser:

And what's something that you wish that somebody who's trying to have a friendship with somebody that has NVLD, what are some things that you'd want them to know?

Carolyn Sophia Skowron:

I think it's, you know, you need to be a little more patient. You have to try to empathize a little bit in the sense of that sometimes, or sometimes picking fights, not intentionally, but it's like it's a defense mechanism of you feel like you're going to get rejected or, you know, whatever. 

And I've had to learn through a lot of time too that my friends now are solid and so they have my best interests at heart. And so I don't really need to go down that road as much as I used to. So I think that that's definitely something that I've taken a lot of time to learn and grow on my own. 

But I mean, I definitely would say that, being a friend or being in a relationship with someone with NVLD, you just have to understand that they're going to internalize a little bit more. And so if they are acting more nosy or they're trying to understand something more than once or repeating something more than once. Like, it's not anything personal or anything against you.

It doesn't mean they're not listening. It's just sometimes how our brains work. And sometimes our brains are, like I like to say, like a hamster wheel. So like you're constantly thinking a million things at once. And so sometimes you have to kind of like take a second and be like, okay, we're going to worry about this right now. We're going to focus on this later. And that's something that I think, being patient with someone with NVLD, I think, is the biggest thing for sure.

Lauren Clouser:

Yeah, I appreciate that advice. Can we also talk about the visual-spatial component that you mentioned earlier? What are some of your challenges with that? You mentioned parallel parking.

Carolyn Sophia Skowron:

I mean, at my old apartment building, actually, it was really, really tight. And I had this one day where I ran into the pole and started crying and called my dad and I was like, it's because of my diagnosis. It's because of NVLD. And I feel so dumb, all this stuff. And my dad reminded me, give yourself grace too, because you're doing the best you can. 

And I think also too, it's been very helpful having very supportive parents throughout this whole thing because I know not everyone has that. And I'm very grateful and lucky with my sister too, just having that support. But I think that that's something that I constantly have to, you know, parking is a huge thing for me and sometimes even directions too, because, you know, again, it's the spatialness.

It's not really recognizing, oh, like 300 feet is like right here, not another block. So just like a lot of directional things, a lot of just spatial things and, understanding things where it really comes down to when you do mess up in that sort of situation, you really do just have to give yourself grace.

Lauren Clouser:

Yeah, that makes a lot of sense. And what advice would you have for either other people with NVLD, or other people who are struggling with their mental health? Maybe what is some advice that you would have wanted to hear yourself when you were younger?

Carolyn Sophia Skowron:

I think it's number one, everyone is different. Like regardless of having a learning disability or not, everyone is different. And so we all have our things that we're good at and we all have our things we're not good at. And I think that it's recognizing that, you have to— you know, I said grace, and I think that's a big thing, is learning to give yourself grace, learning to not be so hard on yourself, learning to not think that you deserve anything other than the best. I think it's understanding that you shouldn't think that you deserve that. Or, you know, when I was in that really toxic mindset, in that really bad place, I literally thought I deserved pain and all this stuff. And the depression with the internalization was just really, really hard. And so it took a lot of years of therapy to kind of untangle this negative mindset that I had formed for most of my life.

So I would say that getting help and acknowledging that therapy can be a really useful tool if you are willing to listen and willing to try it, even if you are like, how is this going to help? What are these things going to even do? But giving things a chance and giving things time, because I think that's kind of been a thing that I've realized is, the more I've given stuff time and the more that I've tried to really just focus on how I can better my life and not so much focus on that negative side, which I was in high school and even college really struggling with my mental health. So I think that getting help and being open to that. 

And also I think finding even one good person to confide in, whether that's a family member or a friend, a psychiatrist, therapist, whatever it is, it's just important to find someone you can talk to. And I think that I've learned over the years that I've always been close with my family, but I also had this sense of like I didn't want to worry them and I didn't want to talk about what's going on. But now it's like if I'm having a bad day or I'm feeling a lot of emotions or whatever, I'll talk about it rather than press things down because compartmentalizing is probably one of the worst things you can do even with NVLD, because at some point— it's like a ticking time bomb. It's going to go off. And so it's important to kind of know that. And so you can kind of have a framework and these tools that you can use constantly. 

And one of the biggest things that I've learned in therapy too is breathing and the deep 3 that I've learned in therapy. It's 3 deep breaths. So you take one deep breath, you inhale, you exhale, another one, inhale, exhale. And then the last one.The more I did that, the more it kind of helped me regulate my nervous system so that I wouldn't be in constant states of panic or manic or just getting in those really bad mental health states. So that's definitely been a huge thing that's helped a lot. 

But I think that if you find out that you have a diagnosis and you're in high school, I think the biggest thing is understanding that it's 4 years, and to not worry about what people are gonna think about that because the people that love you, the people that support you, the people that are really going to be there for you in your life, they're not gonna judge you for having a learning disability. I mean, my friends even say it makes me, me, you know? And so even when I need a whole block to parallel park or things like that, you start to laugh at things and you start to not take things so seriously.

Lauren Clouser:

That was so much good advice. Thank you so much for all of those insights. I wanted to let listeners know, where can they go to learn more about you? You have a book out as well, right?

Carolyn Sophia Skowron:

Yes. My book Unbreakable is on Amazon, but you can also go to my website, which is carolynsophia.com. And there you can find for speaking, for the book, and my social links as well. And yeah, you can hopefully learn about Unbreakable, and hopefully it could help someone who's struggling with their own mental health.

Lauren Clouser:

Absolutely. We'll include that link in the show notes. Carolyn, thank you so much for being on the show today and for sharing your experience. These are stories that really matter and will help to raise awareness, and to also get rid of some misunderstandings around learning disabilities as well. So thank you so much for being on the show.

Carolyn Sophia Skowron:

Thank you.

Lauren Clouser:

Thank you for listening to the LDA Podcast. To learn more about LDA and to get valuable resources and support, visit LDAAmerica.org.