Interview with Megan and Me (Parts 2 and 3)

Good morning, or good afternoon, or good evening, depending on where you're listening from. This is Living with an Invisible Learning Challenge, a podcast where we talk about the challenges and triumphs of living with NVLD—that is, a Nonverbal Learning Disability. We'll not only be talking about the challenges that I have personally, Jennifer Lynn Purcell, but also the challenges that other NVLDers have in their life with having that learning challenge.

Megan: And I also like to broaden out to other learning challenges like autism and dyslexia, ADHD, and Asperger's to try to be more inclusive and to compare and contrast the challenges that we all experience as neurodivergent. I also try to include neurotypicals as well, in terms of saying they might experience similar challenges, but to different degrees than neurodivergents do, to try to say, "Hey, this is how we can help each other with these challenges." It was such a relief because I finally had an answer to all the challenges I had growing up. The lightbulb went off, you know? It's awesome. But I know some of the people I've interviewed for the podcast, who weren't diagnosed until much later than I, like 56 or even older.

Jennifer: Wow. That's interesting. I think that's even more challenging because you go through so much more of your life, like you're saying, wondering and being overwhelmed.

Megan: Yeah, for sure.

Jennifer: Yeah. And I used to feel this way, maybe you did too, being a little bit of a burden, but not so much anymore, with being able to work on things more.

Megan: Yeah. It definitely still sometimes feels like a burden, you know, with certain things. You relive moments in your head, like social interactions that were super awkward. You think, "Oh, I shouldn't have said that," or, you know, you lose friends sometimes because of how you are with your NVLD. So yeah, I definitely feel in some ways it is a burden. And math is still super frustrating. Simple things that other people can do, I can't. It's so frustrating to educate others and help them understand that I can't do certain things. I can't read a map. I know it seems simple, but I just can't do it.

Jennifer: I have a challenge with reading maps, too. I don't know the compass directions very well. In college, the way I learned the compass directions was actually easy because we often said "southwest campus" or "north campus," so I got that better. But when I was outside of that, I had no clue where those were.

Megan: I don't know if it's an NVLD thing, but I almost have to take visual pictures in my head and snap pictures of places. I remember that if I remember that place, then I know that it's close to this other place. For example, I had to go downtown to Toronto recently for my graduation, and I was better at directing myself than my boyfriend was. He was like, "How did you know where that was?" I'm like, "I just remember because I take pictures in my head." It helps me remember key locations.

Jennifer: That's interesting. I do the same thing. I try to remember landmarks better than street names or left and right turns. When I'm driving or trying to go somewhere new, if I go there again, I can usually do it without a GPS because I can remember the landmarks along the way.

Megan: It is interesting. I'm like, "I don't know why I remember this, but I do." I remember that this is that, and this is this, and it all just connects.

Jennifer: I agree with you. I don't know why I'm good with memorizing names or numbers, but I'm like, "You know what? It doesn't matter. I just can't do it."

Megan: It almost makes you think that maybe because of the damaged parts in your brain from NVLD, it rewires it. You have strengths in certain areas compared to others.

Jennifer: Right.

Megan: Maybe it overrides your weaknesses. Who knows.

Jennifer: Yeah, that's true.

Proving Them Wrong

Jennifer: What would you tell others who have NVLD as a motivation when they get discouraged?

Megan: Do not let the label define your life. You're more than just your label. You have strengths and weaknesses, and that's okay. Just keep working with your strengths, keep conquering your goals, and keep chasing your dreams. Don't let the label define who you are. I think the neurodiversity movement is something a lot more people should research. It's being brought to light now, and people are identifying as neurodivergent, which is pretty cool. If you do have NLD, research the neurodiversity movement, and you'll understand that your disability doesn't define who you are. You have strengths and gifts.

Jennifer: I agree with you on that. It's good to focus on your strengths. If you focus too much on your weaknesses, it can really make you feel like you're stupid or can't do anything, which isn't true. For me, what I use for motivation is I try to remind myself of how far I've come in working on my challenges.

Megan: Yeah, exactly. You have to look back and see how far you've come. When I was formally diagnosed as a child, psychologists and numerous teachers told me I wouldn't make it past high school and wouldn't amount to anything. They basically said I was stupid. They never saw me going to college or university, but I made it this far, so I can definitely look back and feel good.

Jennifer: Prove them wrong.

Megan: Exactly.

Jennifer: I did that, too. When I was accepted into UC Berkeley, they wanted me to go to a summer program that was a test to see if I could handle the academic level, which is pretty high. If you pass, you can go there for four years. I was passing my courses, but I wasn't doing anything better than a C. I asked my counselor why it was required, and she said it was because I was homeschooled before college. They didn't think I could succeed. It was challenging because I had to adjust from online school to in-person school with thousands of students.

Megan: Yeah. I can relate. That's interesting. I didn't know you were homeschooled. I was homeschooled for a few years because I was going to a small rural school, and I was the only child with a learning disability. The teachers didn't know how to teach me and were frustrated, so my parents withdrew me. Then, they admitted me to the special education program, but I had to take a bus that was an hour away from my house. It was awkward reintegrating myself into that educational environment because of my social skills and everything else that goes along with homeschooling.

Jennifer: I agree with you on that. Going through college was a nightmare for me because of having NLD and trying to adjust to being away from my family. But what made it easier was getting my accommodations for my junior and senior years. Before that, I had CSS, and then I went up to A's and B's.

Megan: Yeah, that's awesome. Very similar to my story. I was like a C/D student all the way through public school. Then, in grade six or seven, I had one teacher who actually taught me. She saw my gifts and empowered me to succeed. It just takes one teacher to turn your life around. I went from a C/D student to flourishing with A's, 80s, and 90s. It was just like, "Wow." That moment just turned around for me.

Jennifer: I remember when it turned around for me, too. It wasn't only the accommodations. I had a teacher's assistant who was so generous with his time. He'd let me take extra office hours and helped me draft my essays. That really helped me because it was a social theory class, and that was hard, having an NLD.

Megan: I can imagine. That's abstract thinking. Oh, gosh.

Jennifer: Yeah. A lot of times, it went over my head. I didn't tell him exactly what I had, but he knew what I had challenges with. I even did an interview with him for this podcast.

Megan: Oh, that's cool. That's awesome.

Jennifer: It was interesting because he actually listened to the podcast. He's now a professor at NYU, teaching what he was helping me with. He uses the podcast to help his students, which I think is amazing.

Megan: That's awesome.

Jennifer: It's always a good moment when you have certain teachers and people who just understand and touch you in a certain way.

Megan: Right.

Jennifer: Yeah.

Navigating the System

Megan: For people who think they have a learning disability but aren't sure, what would you encourage them to do?

Jennifer: That's a tricky one. There's still a lot of stigma with knowing something's "wrong" with me or my child. Psycho-educational assessments are the way to go if you suspect you have NVLD. My parents had to pay a lot of money for my first one, but the college one was covered by the government. I have no idea how it is in the United States, but in Canada, it can be very expensive if parents have to do it outside of the school.

Megan: Yeah. I'm not sure how it is in the U.S. For me, it was based on household income because I did it through an institution connected to Berkeley. The price was based on the household income, so it wasn't as expensive as it could have been.

Jennifer: They are pretty expensive. My parents told me they spent one or two thousand dollars on my first diagnosis when I was seven, which is crazy for a day-and-a-half-long test.

Megan: Yeah. It's definitely different over here. For me, it took a few months just to get the appointment. The price was different because of how the system works. It was $250, which is way less, but it could have been thousands. I did about 20 different tests over a week. They are very lengthy and tiring.

Jennifer: Yeah, they are. They are very long and tiring, and you're just exhausted after.

Megan: It almost feels like you're a hamster or a lab rat for the day, and they're studying you. In Canada, the educational assessment expires every five years. You have to redo the same test, and it's basically just to confirm you still have NVLD. It is frustrating to have to go through it all over again.

Jennifer: I did my degree in four years, and I don't think it expired. When I got my accommodations, I was going to do some summer classes at a community college, and they let me have my accommodations, too. But that is interesting. I don't know if it would expire or not. It's very strange.

Megan: What were some of the accommodations you had?

Jennifer: I had extra test time and was allowed a private, quiet room because I get test anxiety. That was definitely helpful. Extensions on assignments were not so much in college. My university accommodations were more flexible and accommodating. I was never allowed extensions on essays in college, but in university, I was always allowed extensions up to a week. My program was disability studies, so they allowed me however long I needed, which was really, really nice.

Megan: Did you transfer to a university?

Jennifer: I graduated from college. In Canada, to get into certain university programs, you need a college diploma first. I did two college diplomas: child and youth work and journalism. I didn't do anything with journalism because I found out it wasn't what I wanted to do. I love writing, just not that kind. I went into the helping field and had to get my child and youth work diploma. That's how I was admitted into my disability studies program at university. That's how it works with certain programs in Canada. I'm not sure about the United States.

Megan: With the U.S., you get accepted based on filling out an application, and before then, you have to take standardized tests called the SAT or ACT.

Jennifer: Oh, yeah. We don't have those. I'm so lucky. I've heard how torturous they are, and I can't even imagine having NVLD and having to write those. For certain programs in Canada, we might have them. My friend did the veterinary technician program, and she had to go through a pre-test to see if she had the math skills. Some nursing programs have them too, but luckily, we don't have them for most of our programs. Thank goodness.

Megan: The ACT was easier because, unlike the SAT, it has history and science, and I was good at those subjects. The SAT is just math and language, like reading comprehension. That was challenging for me. What got me in was my extracurriculars and showing that even though I didn't have good test scores, I was a student who applied myself. I was the same way. I always had tutors and tried my best, which I think helped me get into college and university.

A Proud Accomplishment

Megan: We have standardized testing in my province, Ontario, and I don't agree with it. It's called grade three testing, grade six testing, and then another one in grade nine, the Ontario literacy test. You have to do these torturous tests of reading comprehension and writing just to see where your child is at. It's torture.

Jennifer: I agree. It is kind of torture. Even if you have extra time, you might not do better. I had extra time, and I could take tests in a room by myself or with very few people. I could record my lectures' audio and have the audio of my textbooks.

Megan: Assistive technology. Yeah. It's helpful because if you're an auditory learner, you can hear it and listen to it.

Jennifer: It makes it easier for me to remember it. If I try to read a physical book, I get so tired. I lose my place, and it makes me very sleepy. I don't know if that's NLD or something else.

Megan: That's funny, you say that. I know when I was younger, my reading comprehension was a lot worse. Do you find you have to read things twice to understand what they're trying to say, or do you have to go back and reread? That's something I struggled with a lot, especially in university. Doing a university thesis and all the readings was torturous. I had to highlight and go back and reread it over and over and make my own notes, especially university readings, because they're so thick and condensed.

Jennifer: I agree. With my social theory class, even though I would listen to it, I wouldn't get it right away. So I would meet with my TA, and he helped with that part a lot. I couldn't write an essay if I didn't understand it.

Megan: Exactly.

Jennifer: I have two more questions. So one of the things I just kind of thought of with college, if you're comfortable with sharing, did you have an experience where you got embarrassed, like a teacher called on you, and you couldn't answer the question?

Megan: I wouldn't say in college. I feel like they don't call people out in college or university, but in public school, yes, definitely. I would always get anxious in fear that they would put me on the spot. I would even count the number of people ahead of me if we were reading around the classroom. Reading was never an issue for me, but I was always socially awkward and shy. It was always difficult being called on and put on the spot. It feels really overwhelming, and you get anxious and don't know what to say. We're already awkward with NLD, and that just makes it 10 times worse.

Jennifer: I can relate to that. When you said reading around in class, two stories came to my mind. I did that with my TA in a smaller group, and I was nervous because when I read, it didn't sound very smooth out loud; it sounded choppy, and I couldn't emphasize any places that needed it. I couldn't keep track of where I needed to start after somebody. I got a little better at doing the podcast because my mom said, "You sound very monotone." So I would listen to emotional movies, like Cinderella, and try to copy the emotion. It helped because I already knew the lines.

Megan: That's awesome.

Jennifer: And it was fun, so doing my podcast became easier. Another story with being called on was with my social theory professor. I was leaving the class to get more water, and he called on me right as I was leaving. I was like, "Damn it," because that was the one time he did it. He wanted me to comment on what he was talking about and what my thoughts were about it. We were going through the feminist movement in class, but I felt very put on the spot.

Megan: I feel like with NVLD, we have to prepare and know as many details in advance as possible. The most recent example would be my thesis presentation. It was super disorganized. They didn't put out the schedule until a week before the presentation was due. I felt very awkward and put on the spot, not knowing what to expect. I'm very detail-oriented, so I don't like it when things get out of place or shuffled. I get all scatterbrained and anxious.

Jennifer: I'm the same way. The next day, my TA asked me how I felt when my professor did that. He actually thought I did pretty well.

Megan: Yeah.

Jennifer: What's your proudest accomplishment so far?

Megan: Graduating from university with honors. Proving everyone wrong and accomplishing that was a huge moment for me. And starting my own business, and Beautiful Minds. I just really want to help kids with learning disabilities and those with Nonverbal Learning Disabilities. I feel like with NLD, small accomplishments are huge accomplishments for us. Like for you, being able to drive is huge. Some people can't drive with NLD. You can do things you never thought you could. You just have to find a way and figure it out.

Jennifer: I agree with you. I have two accomplishments that come to mind. I also graduated from college because I did it with NLD at a school that was very challenging for me. I was the first woman in my family to graduate from college.

Megan: That's super exciting. I was the first to graduate in my family, too. We call it first-generation.

Jennifer: Yeah. So it's a huge, huge accomplishment. I just remember feeling so proud when I got accepted, and then when I graduated, I was like, "I made it. I did it."

Megan: You proved them wrong.

Jennifer: I did. We both did. I'm still very proud that I created the podcast because it helps other people, neurotypicals and neurodivergents, understand NLD and other learning disabilities better. I love watching it grow.

Megan: I've seen the success and listened to your podcast. I've been following you for a while, and I'm like, "Wow, that's amazing." In the back of my head, I'm like, "Maybe I should start a podcast one day."

Jennifer: It is fun. I was going to ask you, how did you find the podcast?

Megan: I think I was on Spotify, searching for NVLD out of curiosity. I'm not technology-savvy, and I was so late getting Spotify. I was searching one night, and your podcast came up—the first and only NVLD podcast. I started listening and was like, "Oh, wow, this is awesome." It was a random search, and here we are.

Jennifer: I'm glad you found it. I had the idea almost two years ago and knew it would be one of the few out there. Now, when I type "what is NLD" into Google, I usually come up above the NVLD project.

Megan: That's awesome. That's a huge accomplishment. I don't think there's any other NVLD-specific podcast. It's such a blessing to have this as a resource where you're helping educate others about what NVLD is.

Jennifer: Thank you for saying that. I feel the same way. It's a very proud accomplishment. The anniversary of when I started it is in July.

Megan: That's cool. Beautiful Minds' anniversary is in July, too.

Jennifer: Oh, cool. If you do want to start your own podcast, I can help with that. I helped Linda Kay, who's an ambassador for the NVLD project, create a podcast about NLD and ADHD.

Megan: Yeah, for sure. I'll keep that in mind. I have a lot more free time now that I'm done with university. I was so busy with my thesis. That would be an amazing opportunity.

Jennifer: I understand being busy. I was so busy in school, just focused on doing well.

Megan: It's so overwhelming. With NVLD, it takes so much longer for us to complete things. I think that's one of the burdens. It's so frustrating. It has impacted my workability. I've had co-workers get mad and frustrated because I might act like I don't know what I'm doing, or it might take me longer. It's just how I work.

Jennifer: I can relate to that. My mom understands that it takes me longer, but in the beginning, when I was working for her, I'd make so many mistakes. I still do sometimes, but I try to learn from them and not make the same one again.

Megan: Don't beat yourself up over it. We struggle with low self-esteem and low self-confidence with NVLD because we're our own worst enemies. We're so hard on ourselves for messing up on simple things we think we should be able to do, but we just can't.

Jennifer: Yeah, I agree. Do you have any questions on your mind before we wrap up?

Megan: Not that I can think of. No.