A Shared Journey: Living with NVLD

Me: Good morning, good afternoon, or good evening, depending on where you're listening from. This is Living with an Invisible Learning Challenge, a podcast where we discuss the challenges and triumphs of living with NVLD, or nonverbal learning disability. I also like to broaden our conversations to include other neurodivergent experiences like autism, dyslexia, and ADHD, and to include neurotypical people as well, because we can all help each other navigate these challenges.

Today, I'm here with Megan, one of the NVLD Project's social ambassadors. Megan, would you like to introduce yourself?

Megan: Yeah, hi, everyone. My name is Megan. I was formally diagnosed with NVLD when I was seven, so I've been living with it my whole life. I recently graduated from a disability studies program with a bachelor's degree, and I also own a business called Beautiful Minds, where I support youth with learning disabilities.

Me: Congratulations on graduating!

Megan: Thank you! It was just this past week.

Beautiful Minds: Empowering the Next Generation

Me: That's amazing. Tell me a little about your business.

Megan: It's a neurodiversity-based approach. I empower youth to see their abilities instead of focusing on their disabilities. I work with kids as young as seven, all the way up to teenagers.

Me: That's beautiful. You must have a big impact on them. Do you primarily work with kids with NVLD?

Megan: I have a few kids with NVLD, but most have other learning disabilities like autism or ADHD. It really varies.

Me: That makes sense. What made you choose to be an ambassador for the NVLD Project?

Megan: I've always loved writing. It gives me a voice in the disability community, and I wanted to share my story to empower others.

Me: Out of all the kids you've worked with, is there one who stands out?

Megan: Oh, that's a hard question. They've all especially touched me. But last summer, I worked with a teenage girl who had NVLD and I helped her get her first job. It was empowering to show her that her diagnosis doesn't have to define her and that she can still do wonderful things.

The Uniqueness of NVLD

Me: I can relate to that. I was diagnosed with NVLD later in life, when I was 19 in college. A lot of our listeners know that I work for my parents, and it's easier for me to work for them because they're so knowledgeable about NVLD and can help me with the challenges that come up.

Megan: Yeah, that must've been difficult, not knowing what you had for so long and always having those struggles.

Me: It was. I was tested as a child, but the results weren't strong enough for a formal diagnosis. Interestingly, they did note that I might have social challenges, which is a key part of NLD.

Megan: It's funny you mention that. I think my original diagnosis was "social-emotional learning disorder" or something similar. They didn't know much about NVLD back then, so it was just this vague label for struggles with math and social skills.

Me: Thinking about your work with the NVLD Project, what was the most challenging or rewarding blog you've written?

Megan: My most rewarding was probably "The Irony of a Nonverbal Learning Disability." It allowed me to highlight the misunderstandings of NVLD. The hardest was a personal letter to my parents, "Dear Mom and Dad, with Love," where I shared my experiences growing up and how much their support meant to me.

Me: That's so sweet. My hardest one was about comorbidity with NVLD and chronic migraines. It was challenging because I wanted people to know that you can have more than one disability and that they can be just as difficult as NVLD.

Megan: Right. There is a lot of overlap with autism and other learning disabilities, and I think that's why people get confused. I can also relate to the chronic illness part. I was diagnosed with a small brain tumor two years ago, so I also deal with headaches, which can be very frustrating to manage along with NVLD.

A Double-Edged Sword: The Blessings and Curses of NVLD

Me: Do you ever feel frustrated by your diagnosis?

Megan: That's a difficult question. When I was younger, I definitely wanted to "rewire" my brain. I was so frustrated that I couldn't do simple things like math, skating, or riding a bike like my friends. But now, after studying disability and as an adult, I see the gifts that NVLD has given me. I wouldn't change who I am. It gives me purpose in a weird way.

Me: That's good. Can you elaborate on some of the challenges you still face?

Megan: Sure. Math is still completely black and white to me, but that's okay—we have technology now! Executive functioning and organization are also still struggles. I also have a hard time with sarcasm and taking things too literally, so I don't always understand jokes right away. The biggest challenge for me, however, is driving. I tried driver's ed and failed miserably. I get frustrated, but I'm okay with the fact that I may never master it. It's nice to know that other people with NVLD struggle with it, too.

Me: You're definitely not alone. The distance and depth perception part of driving is a big issue for me, too. I've had a few minor car accidents and am still saving up for a car with a backup camera. My parents are a big support system for me, and I'm fortunate to be able to carpool with them to work.

Megan: I've had a similar experience with my parents. When I was younger, they were very supportive, but they've seen me accomplish so many things that they think I've outgrown my NVLD. They don't understand why I still struggle with things like driving. It's a weird challenge to deal with.

A Giftedness for Life

Me: What do you think are your strengths because of your NVLD?

Megan: As I said, it's a blessing and a curse. My biggest strength is writing. I've always been a gifted writer and love being creative. I also think having a disability has made me more empathetic. I'm also a very strong auditory learner. I can remember conversations and lectures from years ago, which I think is a unique gift related to NVLD.

Me: I can relate to the auditory learning part! I'm not a great essay writer, but I'm good at creative writing, and I can remember song lyrics and lines from movies.

Megan: It's so funny how that happens. You can recall things that were said to you from years and years ago, and it just sticks.

Me: What's one thing you wish the world knew about NVLD?

Megan: I wish people understood how misunderstood the name "nonverbal learning disability" is. People hear it and get confused because we are very verbally gifted. We just struggle with the nonverbal aspects of social skills and cues. I wish people understood that even though we have an invisible learning disability, we have strengths and gifts to share with the world. I hope the stigma and shame around learning disabilities will change one day.