Interview With Janie and Jennifer

Jennifer:  All right. Good afternoon. I am here with Janie, and she has NVLD, and I will start off by having her introduce herself and where she's from.  

Janie: Good afternoon. Thank you, Jennifer, for interviewing me on the podcast today. My name is Janine Loeffler. I live in Nashua, New Hampshire.  I am happy to be here with you today to talk about NLD and my experiences with it.

Jennifer: I'm happy to be here with you, too. So,  what do you  Do you have a job?  

Janie: I do have a job. I work at a non-profit for people with developmental disabilities in Nashua, New Hampshire, called The Plus Company, as a receptionist. What we do at The Plus Company is we provide, like social events and classes, and job Development classes for people with disabilities. These are the people who helped me find my job. So actually they hired me as a receptionist in 2015. I've been working for them for six years. 

Jennifer: That sounds like a nice job. Do you enjoy it? 

Janie: I do enjoy it, yes. I mean,  things are pretty slow now because we're not open to full capacity because of COVID, but it's, it's still good. I'm, I'm still enjoying it despite that.  

Jennifer: That's good.  So I Live in San Diego, California. I work for a nonprofit as well.  I work for a spiritual community that is in San Diego, and I'm their admin assistant and tech, and social media support. And one of the things I like about the job is that I work with my parents because it's just easier for me since they know about it, and I'll be able to help them with that. If that is an issue in the workplace. And, I never really find myself bored cause I can do a lot of different tasks. So that makes it easier for me to do it. 

Jennifer: Do you know when you were diagnosed with NLD?  

Janie: I was diagnosed at age 14. How I got diagnosed was I was tested by a psychiatrist at Mass General Hospital who tested me on like social skills and visual spatial stuff, and that's how they determined that I had NVLD. 

Jennifer: Yeah, I was diagnosed in college, I remember it was by a psychiatrist or not. I think it was just by somebody who does testing for learning disabilities.  But she definitely was helpful because and I was able to go through college more easily. And after having my accommodations, that made it a lot easier for me.

Jennifer: How do you feel about having LD? Is it challenging sometimes? 

Janie: It is challenging sometimes, like in high school, it was harder for me because I didn't understand my diagnosis, and I didn't know a lot of people who had it, and I was bullied a lot. Throughout school. And I think that was because people did not understand my disability.

I also have cerebral palsy and a vision disability called cortical vision impairment, which means I'm permanently blind in one eye and I walk with a cane. as far as NLVD goes, like,  I didn't meet other people with my disability until college, and after I went to a college in New England, and  I went to New England College in Henniker, New Hampshire, and,  through that college, I had, I met many people who had very different, who had a lot of different disabilities, including,  including NLVD and autism spectrum disorders.

Like that's how I met my partner, Matt.  We met in college through a mutual friend, and we had our commitment ceremony in  2019. So, we have been together ever since 2008.

Jennifer: . I didn't really, ,  I didn't get my NLVD until, ,  And not right after I was diagnosed because I was still understanding what it was and trying to, , learn more about it, but I would say more until,   after college and being able to,   get used to, I  mean, of course I had it and I'll be before then they get used to what it felt like and being able to work with the challenges and being able to,  know how to make it easier if I could. 

I would say, I mean, I've never met somebody in person with NLD, but I've been able to meet a lot of people through the podcast virtually with NLD, which is really,  I think, a good thing to be able to interact with them. 

Jennifer: Have you talked to other people through the Facebook page? Like, have you talked have you interviewed other people for the podcast that are on the Facebook page that we are on? 

Janie: Yes, I have.  And I've worked with people who have autism in the past, before the current job. So yeah.  Yeah. I like that Facebook group because everybody is so supportive of each other and so helpful. I've been on it for a couple of years now, and I've also recommended it to a couple of my friends who also have NLVD.

So after I graduated from college, I struggled with friendships for a while, and I was introduced to other people who had NVLD through a therapist that I used to have, who passed away from cancer a couple of years ago. And I was sad when I found out that she died, but she connected me with a couple of girls whom I grew close to over the past couple of years.

One person whom I  already knew beforehand because we were friends for a couple of years before we started meeting her for counseling. The, the counselor's name was Teresa Bolick and this was a woman's group for people who had,, who also, who have, , who have NLVD and autism spectrum disorder. So that was a nice way for us to connect and talk about our problems.

And we grew to be close over the years, and, while certain people in the group have drifted away from us,  my two best friends, Jen and Sonia, have been close ever since the beginning of the group. So,  yeah, that has been, and then our group has our group of friends has grown over the past several years, and we have a lot of Other friends who also, they may not all have NVLD, but they have different disabilities that are on the autism spectrum.

And it's, it's good. I mean, we don't always, we, of course, all friends have our issues with getting along, but I mean, for the most part, we all get along. Like, for example, last night, we just went to Boston to celebrate my friend, Amanda's birthday, and we had a good time.  I'm tired because I spent all day walking around Boston.

So,  but yeah, I mean, we have a great time together, our group of friends, and I'm very happy to have met all of them.  And one common interest that we all share is doing plays together with a local theater company.  We do, for example, I just finished being in a play with the Amherst PTA with my best friend, Sonia, whom I was just telling you about, and a couple of my other friends from the social group that I was just telling you about.

And, the good thing about this theater group I do play with, The Amherst PTA, and the subsequent group I do at the river at the Mosaic Center for the Performing Arts in Milford, New Hampshire, is that they're all accepting of all people with different disabilities. And the show that I'm in now is called Shrek the Musical.

I start rehearsals on Wednesday night for Shrek. This is my second time being in Shrek. I was in Shrek in 2016 with the Amherst PTA and I like the message in Shrek because the fairytale creatures are being kind of bullied by Lord Farquaad and I love how they stand up for themselves against Lord Farquaad and I can relate to that because I mean I was bullied a lot as a person with a disability and I know what it feels to be like those characters. 

Yeah, I can see why you would like that message. I, I like that as well. You were talking a little bit about your struggles already with the friendships piece. I struggle with that too, in terms of making friends and trying to keep the relationship once it's made, and you know, for me, I find it easier when my friends know that I have NLD because then I can kind of relax more and be able to be myself more.

Jennifer:  Do you? I don't know if you have challenges with math or? 

Jannie: I hate math. I was never good at it throughout school. I always struggled with it. Yeah, me too.  , 

Jennifer: I only got better because I had a lot of help with it. I had tutors, and I pushed myself to get better because I knew I could.  It helps if you can at least do basic math, for like, being able to manage a budget, which is also hard when you have NVLD.

Janie: I've been noticing that I think my troubles with math do affect me being able to manage my budget. I find that to be hard sometimes.  And also like, I tried a job at Target once, and they trained me on the cash register, but I had issues with that. I had a hard time with that, and it was stressful for me.

Jennifer: Yeah. I can relate. I can relate to that too, where I'm working with my mom on trying to track all that I spend and make sure that when   I'm going to organize it into the sheets that she made for me. For different categories that it all adds up evenly across the board. Because it, and because that's a good thing, but when it doesn't add up. 

That's when it gets challenging for me. I'm trying to figure out why, and often I need her help to figure out why. For me, ,  I, I wasn't, fortunately I was homeschooled, so I didn't, I wasn't bullied because I was with, I was just with my brother.   I think I would have been bullied in school if I was,  I weren't in a traditional public school.

And,  well, actually, I was bullied a little bit when I was in Girl Scouts. They, they made one of the main clicks, and they made fun of me, and I, I didn't like that. So I quit the group when that happened.  So how do you compare being homeschooled to being in a regular school? Cause like  I've known people who are homeschooled through the theater group that I'm in, but sometimes I have trouble understanding how schooling works for that, as far as the grade level.

Can you explain that to me a little bit better, because that's always confusing for me. Yeah, well, for me the grade, the grades that I went through were the same as in public school. I went through grade school, middle school, and high school. Oh, okay. Yeah. My college was a traditional public school was UC Berkeley, but it was basically all online.

So I guess maybe some programs might be different, but for my charter school that was online, you went through the grades at your own pace. And,  you weren't, you didn't need to go at your didn't need to go at other people's pace until you got to high school, when they expected you to be able to go a little bit faster because of academic experience, right? 

Jennifer: It seems like your friends can support you with NVLD, or is your family as well? 

Janie: Yeah. My parents and my sister have always been supportive of my disability. My mom and I wrote a children's book together about disability awareness that came out in September.

And we've been working throughout this school year, promoting it by doing things like online school visits and online interviews with news stations. The book is called "We Want to Go to School," and it's about the law that was passed in the 1970s that allowed kids with disabilities to go to public school.

Jennifer, that sounds like a really interesting book.  What else was I going to ask you?  But by the way, you can feel free to talk about your physical challenges with having cerebral palsy and a visual challenge as well. You can talk about those if you want to. 

Janie: Sure. I'd be happy to. So, cerebral palsy is a disability that helps, that gives me trouble with my muscles. Because of that, like, I was never really good in sports, and I'm very bad with visual spatial things, so I have trouble, like, lining things up on a shelf, and I was never really much of an athlete in college, which is why I'm glad I discovered theater, because that way,  I could express myself creatively and I also like to sing and write poetry.

So,  I mean, I did, I did do sports, like I did rec sports. In middle school, I always had trouble with that. Like I played basketball, but because of my vision impairment, I had, I got nervous when the ball came at me. Cause I was worried it was going to hit me in the face. And then like, I did track and field one year with the rec department, and I was not a fast runner.

I excelled at the field events, like the long jump and stuff, but I was just never a fast runner.  And then, like, when I got to high school, I was the manager of the cheerleading team. And that's when I experienced an issue with bullying. That's another, that's another thing that my mom and I wrote a book about to kind of work, raise disability awareness, and awareness about inclusion and all that stuff.

So, once I got to college, things were a lot easier because I said, as I said. The college that I went to, New England College in Henniker, New Hampshire, is well known for its disability services. Like, I got tutoring, I got accommodations for, like, longer time on tests, I was able to, like, use a tape recorder so I could listen to my lectures and take notes on them easier. And that's how I was able to receive my BA in communications through the support of all of my teachers. And tutors. Yeah, I had a lot of support too in college, where, like I was saying earlier, I, like you, had extra time on my tests. I could record the audio of the lectures as well. So it was easier for me to take notes.

Jennifer: And I also had audio of my textbooks. So I could kind of like an audiobook. So I could listen to them instead of having to read them. And that made it a lot easier. I mean, before. I had my accommodations. I think my grades were like just B's and C's. And then I went up to A's. Which, afterwards, obviously, they were helping and making it easier.

 And for me, with support,  I have a lot of support from my family. I'm very grateful for that. And I have support from my friends as well. And being able to help me with my challenges. And, the only thing I'm pretty active in is some sports; I do run as well. And, I also do downhill skiing during the wintertime.

 There have been sports that have been challenging for me to try to learn, like skiing was challenging because of,  I guess, just because of like the balance part and not falling. Right. Exactly. I have trouble with balance too. That's why I was never good at, like, I tried to learn to ski.

Janie: My aunt tried to teach me how to ski when I was younger, but I had a lot of trouble with that because of my balance. Yeah, and like also the visual spatial in terms of like making sure that you're like, if you're trying to estimate how far you weigh from a tree when you're skiing, right. You're closer than you think you are.

Jennifer: That doesn't help a person.  But yeah, that, that makes sense to me. And like, I mean, with running, I've, I've fallen a lot too, in terms of, scraping my knees or whatever,  I can relate to that and like for the visual spatial for me, it makes it challenging, uh, for driving and getting around because of like being able to judge distances or being able to feel. 

The car is one with the car instead of being separate from your body. Yeah. I don't know if you drive or I don't, I can't drive because of my vision impairment, it's a neurological thing. And like, I can't see far away distances. Like I can only see in front of me. So I did try to learn how to drive it.

Janie: I got scared and anxious behind the wheel. So it didn't work out.  Do you drive? 

Jennifer:  I do, but I've, I have had a few car accidents, so. I definitely can understand being anxious and being nervous behind the wheel. , I know for, luckily for me, nobody got hurt with my accidents, but it made me more aware of being on the road and trying to be more, cautious  Just so that I can see my surroundings more and be more aware of them because what also with NVLD it's harder to,  this might be true for you, but it's harder to like focus and multitask for me and the slow reflexes along with the slower processing speed can make Things like driving or other tasks like that difficult.

Janie: Sometimes I have trouble with multitasking, but how I make that easier for myself is to make a checklist on my phone, with the different things I need to accomplish. So that way I get things done quicker. For example, I like to do a lot of creative writing, and right now I'm working on more than one story at a time. 

And that can be hard because.  I have to keep all the plots in order in my head. So right now, what I'm trying to do is make a list in my phone of which story I want to work on first. So that way, I can just directly focus on that one. And then I'll get to the other stuff later. Mm hmm.  That makes sense to me.

Jennifer: I agree. Make a task list on my phone or computer too.  So it sounds like you enjoy creative writing. I do.  Writing runs in my family because as I was saying, my mother is an author and illustrator of children's books and I'm writing a children's book about A, character who is like me, who has cerebral palsy and who does plays mostly inspired by, my experiences with the theater groups that I was talking about that are near me that have been accepting of my disabilities.

Janie: And like this, my character's story is not me, is like. It's gonna be like a chapter book for fourth and fifth graders, about acceptance and being accepting of other people's differences while being involved in the theater group. Based on my own experiences with the theater groups I told you about in the plays that I've done with them over the past, let's see, I've been involved with the Amherst PTA since 2011.  So it's been like nine, no, it's been more than 10 years. Yeah. 10 years with them. And then with the Boys Girls Club I worked, I started working backstage for them in 2009.

I started acting with them in 2012 when I was in It's a Wonderful Life as Mrs. Hatch. Yes, so I have been with the MRSPTA for 10 years and the Amato Center for like eight or nine, I think. I'm happy that you're able to use theater and writing as avenues to express, you know, yourself and be able to have some fud,   I. I enjoy writing too.

Jennifer: I mean, do you write, do you write poetry or anything like that? Not poetry, but I guess for me, writing is more like for blogs and the podcast. But I enjoy doing those because it helps me. Like it helps me when I'm, if I'm stressed out about a recent challenge I went through because of NLD, helps me kind of get it out of my mind and be able to not be as stressed out and let it go.

Janie: And that, that helps me be able to process through it because. I usually overthink things too much. So I do, too. Yeah. I hate that. Cause like, I think that's what triggers my anxiety. The most, is like overthinking that somebody doesn't like you when they do. They're ignoring you when they're not stuff like that.

Jennifer: Yeah. Like my anxiety got worse during COVID-19 19 too. Because of not being around so many people. Yeah, I, I can relate to that. For me, I overthink in similar ways to you as well. And like with one example with car accidents, when I've had one, I tend to dwell on it too long. And what I've been trying to do is like, when I make a mistake like that, I try to be like, okay, well, how can I improve so that I don't make it again?

And be able to ot be as anxious about it. And I think the writing helps because then I can just kind of process through it. Faster yeah.

Is there anything that you wish the world would know more about NLD or cerebral palsy, or your visual challenge as well? 

Janie: I mean, I think overall, people just need to be more understanding.  People with disabilities and learn to be more accepting of them. I feel like since I have been in, since I have been out of college, things have been easier for me, especially since I've helped my mom with promoting her books about my disabilities.

But as far as my NLD goes, one thing that bothers me is that I follow a lot of YouTube channels that do like top 10 lists on movies and shows, and cartoons. They mention in their top list videos that, like NLD and autism spectrum disorders, these are dark and serious issues, but I don't understand why these people think like that.

And I don't know if it's because of a lack of education, but it bothers me as  I see autism spectrum disorders as a different wiring of the brain, and that's how I think other people should do it. And I follow this guy from Australia who's also autistic. His name is Jos,h ad, he has said that in his videos too, that he wishes people could understand that. 

Autism is just a different wiring of the brain. And I just get frustrated when I listen to all these videos. Cause like I blog about plays and I blog about movies, and I blog about TV shows. So, like I do research for my blog by watching all these other YouTube lists about videos and cartoons, and when I hear stuff about.

Autism is a dark, being something dark or serious issue. It bothers me. And I wish I could understand the point of view of these other content creators on YouTube about why they feel that way, but I have reached out to them to try to get them to explain it to me, and they haven't responded to me, which is annoying.

So I wish they would reply, but I don't want to bug them about it either. Cause like, that's the issue that I've had in the past is over-contacting people when they don't answer my questions right away. And that impacted my relationship with a teacher I once had. And it didn't like, I had trouble getting along with her for a while. So, we made up things are fine now, but for a while, things were a little uncomfortable between u,s, and that was mostly because of disability. 

Jennifer: Yeah, that makes sense to me where, like you're saying to, for them to have a better understanding and also to go with that, a better education, which I agree with you that both of those things, I would be,  would be easier for people to interact with people.

Neurodivergent individuals, if they have that. And like you said, I agree if you're autistic or if you have NLD or ADHD or another learning disability, it's just because you are, it's not something dark or wrong with you. It's just that your brain is wired differently from a neurotypical. Right. Yeah.

And, are there moments in your life that you're like, oh, gosh, darn, I wish I didn't have NLD or? 

Janie:  I'm proud of my disabilities because they make me who I am. But sometimes the thing that frustrates me is like simple misunderstandings that I may have with my friends because of our disabilities, because that bothers me.

I feel like sometimes we get into arguments about really trivial things that can be solved easily, but our disability gets in the way, and we constantly have miscommunications. So, I think that's a general frustration that I have, and they must feel that way too. So I, I bet the feeling is probably mutual there, even though they might not have expressed it to me directly. 

Jennifer: Yeah, that I can relate to, where like when I was talking earlier about my mom helping with finances. She and I can get frustrated over that. Easily because, like,e I'm trying to understand what she's describing to me, and she knows that she's not quite describing it as clearly as she could. 

And it's not her fault. It's just because I have an LD that makes it challenging, but I appreciate all the work that she does to try to make it easy for me to understand.   Because not, not everybody does that, and you have to be patient to be able to do that. And,  you have to be able to try to understand where the other person is coming from and what they're thinking, which is hard if you don't know,   if you don't know what it's like to have a brain that's wired differently.

Janie: Yeah. But there,  yeah, there are some times where it is challenging.  Do you feel like NLD or your cerebral palsy, or visual challenge is a burden or sometimes in life? No, not really. I've never felt that way. That' good.  I think sometimes I have, in terms of like, I don't feel it now, but I think in the beginning when I was still learning more about NLD and how to help myself out and help others as well by being able to educate them about NLD and how they could help me.

Jennifer: I think I felt like it was a burden then because it just kind of felt like saying God in the way of things. But not anymore. What else was I gonna ask for other people who are neurodivergent? What would you try to tell them as motivation when they might get discouraged about, like, a mistake they made? 

Janie: Don't let what other people think about you get you down, and just be your person and be yourself. I like that.

Jenifer: Yeah, that's that's ver encouraging and being able to stay positive II would say that as well and being able to  You know, from, for myself,, I try to look back on, when I've had challenges in the past and how I improved from having those challenges so that I can be like, well, yes, I've come pretty far already so that I can, you know, motivate myself and keep going.

 And then, do you have anything that you would say to people who think they're neurodivergent, but they haven't been diagnosed yet?

Janie: I can't think of any advice I would give to people who haven't been diagnosed yet. But I mean, once you get the diagnosis and you learn more about it, learn how you can overcome your challenges more easily, and learn how you can inspire other people to overcome their challenges, and help other people who don't have NLD to understand the disability better.

Jennifer: Yeah, I would agree with that, and being able to get testing. If you can find somebody to do that for you, because then you'll be able to, spread, spread more awareness and understanding about being neurodivergent.  All right, only a couple more questions.  Do you know what your proudest accomplishment is that you've had in life thus far? 

Janie: Graduating from college because my high school guidance counselor didn't even think I would, I could apply. Because of, um, my disability, but I proved her wrong because I graduated in four years, thanks to all of the accommodations and help from all my teachers and tutors. And then, in 2016, I won an award through my work called the Moving Mountains Award, which is given to a person who works at Plus Company who lives the mission statement and encourages other people to be their best. And   I got that award because I'm always encouraging my other coworkers and my other clients, like, for example, I taught a poetry class and a Musical theater class, in the adult education program at Plus mm-Hmm.

And that allowed the clients to express themselves creatively and express how they felt about their disabilities. And we put on performances both for the community at Plus Company and at nursing homes in Nashua. So that was a great experience,  that was a great experience that I have been able to encourage the clients, and that award was because of the encouragement that I provide to people.

Jennifer: Good for you with both of those.  For me, I was also proud of myself for graduating from college, even though it was four years ago, it feels like it was yesterday sometimes. 

Janie: What did you get your degree in? 

Jennifer: It was in sociology.

Janie: Oh, nice. 

Jennifer: Thank you,  I did a minor environmental science, it was challenging for me because not just because not only because of NLD but because of all the essays I had with my sociology classes and, you know, for me, like you were saying all the accommodations that you had all my accommodations made it easier and my teachers and my mom helped me with proofreading my essay. So that made it easier because  I had a challenge, and sometimes I still do, where, what, when I write an essay, I couldn't tell how to improve it unless somebody else looked at it and told me where to improve it. And that helped because like, I could write it and get it out of my head.

But I couldn't, really proofread it. Well,  are there any other questions you have for me? Before we wrap up, not right now, but I mean, if I come up with any, I can email them to you later. Yeah, of course. Well, thank you for letting me interview you today and for being able to talk about NLD and cerebral palsy, and your visual challenge.

Janie: I appreciate it. Thank you for inviting me. I had it. I was happy. I got to talk to you today to spread more awareness about my disabilities. Likewise. Have a great night, Jennifer. 

Jennifer: You, too. Bye. Bye