Interview with Janie and Me

Today's episode is my interview with Jeannie, who has NVLD and is going to share her life and how her life is with NVLD. 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, and 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? 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 provide social events, 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 still good. 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 actually 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 for me I work with my parents because it's just easier for me since they know about NLD and they're able to help me with that if that is an issue in the workplace and I never really find myself bored because I can do a lot of different tasks so that makes it easier for me to do it. Do you know when you were diagnosed with NLD? 

Janie: I was diagnosed at age 14, and how I got diagnosed was I was tested by a psychiatrist at Mass General Hospital, who tested me on things 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 I was able to go through college more easily, and after having my accommodations, that made it a lot easier for me. How do you feel about having NLD? 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 but 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 yeah 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 NVLD 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 since 2008. 

Jennifer: Yeah I can relate to a little bit for you too where I didn't really I didn't really 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 NLVD 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 and I would say I mean I've never met somebody in person with NLVD but I've been able to meet a lot of people through the podcast virtually with NLVD which is really I think a really good thing to be able to interact with them. Have you talked to other people through the Facebook page, like 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 also 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 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 NVLD and so after I graduated 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 really sad when I found out that she died but she connected me with a couple of girls who I grew really close to over the past couple of years. One person who 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 Bollock and this was a woman's group for people who had who also who have who have NLVD and autism spectrum disorders so that was a really nice way for us to connect and talk about our problems and we grew to be really close over the years and while certain people in the group have drifted away from us my two best friends Jen and Sonia we 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 NLVD 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 their 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 and 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 like one common interest that we all share is doing plays together with a local theater company you for example I just finished being in a play with the Amherst PTA with my best friend Sonia 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 plays with the Amherst PTA and the subsequent group I do at the river at the motto Center for the Performing Arts in Wilford 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 fairy tale 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.

Jen: Yeah, I can see why you would like that message. 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 because then I can kind of relax more and be able to be myself more do you I don't know if you have challenges with math or I hate math I was never good at it throughout school I always struggled with it.

Janie: mm-hmm, yeah, me too. I got 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 know it's it it it helps if you at least can do basic math or like being able to manage a budget which is also hard when you have an elite I've been noticing that I I I think my troubles with math really do affect me being able to manage my budget I find that to be hard sometimes and also like I also 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 really stressful for me.

Jennifer: yeah I can relate I 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 organize it into the sheets that she made for me for different categories that it all adds up evenly across the boards because it and then because that's a good thing but when it doesn't add up it that's when it gets challenging for me I try 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 but I I definitely think I would have been bullied in school if I was if I wasn't a traditional public school and well actually I was bullied a little bit when I was in Girl Scouts they they made the one of the main cliques 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?

Janie: Because I know people who are homeschooled through the theater group that I'm in, but sometimes I have trouble understanding how schooling works for that, as well as the grade level.

Jennifer: mm-hmm me a little bit better because that's always confusing for me yeah well the grade the grades that I went through were the same as a public school I went through grade school middle school and high school oh okay yeah I I my college was a traditional public school was UC Berkeley but it was basically all online so I I guess maybe some programs might be different but from my charter school that was online you went through the grades at your own pace and you were you didn't really need to go at you didn't really 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 my academic experience right it seems like your your friends can support you with NLD as your family as well.

Janie: yeah yeah my my parents and my sister have been always supportive of a supportive of my disability to 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 like online school visits and online interviews with news stations the book is called we want to go to school and it's called it's about the law that was passed in the 1970s that allowed kids with disabilities to go to public school that sounds like a really interesting book.

Jennifer: What else was I gonna ask you? But by the way, you can feel free to talk about your other physical, or you said you have 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 so cerebral palsy is a disability that helped that gives me trouble with my muscles and 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 the shelf and I was never really much of an athening 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 do I'm sorry I did I did do sports like I did rec sports in in middle school but I always had trouble with that like I played basketball but because of my vision impairment I really had I got nervous when the ball came at me because I was worried it was gonna 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 were raised with disability awareness and awareness about inclusion and all that stuff so and then 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 Hennecker New Hampshire is well known for their 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 all the support of all of my teachers and tutors.

Jennifer: yeah I had a lot of support too in college where like I was saying earlier I like you I 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 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 which obviously they were helping and making it easier and for me with support I definitely have a lot of support for my family I'm very grateful for that and I have support for my friends as well and being able to help me with my challenges and the only I'm pretty active in some sports I I do running as well and I also do downhill skiing during the winter time but there's definitely 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 down right exactly I have trouble with balance too that's why I was never good at like I tried to learn to ski 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. 

Janie: mm-hmm. 

Jennifer: 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 or like a tree when you're skiing right you're actually closer than you think you are that doesn't help for a person but yeah that that makes sense to me and like I mean with running I've fallen down a lot too in terms of scraping my knees or whatever but yeah I can definitely relate to that and like for the visual spatial for me it makes it challenging for driving and getting around because of like being able to judge distances or being able to feel the car as one with the currents of it being separate from your body.

Janie: yeah I don't know if you drive or I don't I can't drive because of my vision impairment it's a logical 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 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've definitely I can understand being anxious and being nervous behind the wheel I know for luckily for me nobody got hurt with my accidents but it definitely made me be more aware of being on the road and trying to be more cautious so that I don't just as 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 sometimes.

Janie: I have trouble with multitasking but how I make that easier for myself is make a checklist on my phone with the different things I need to accomplish so that way I get things done quicker like for example like 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 like 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. 

Jennifer: mm-hmm, that definitely makes sense to me. I make a task list on my phone or computer, too, so it sounds like you really enjoy creative writing.

Janie: I do like writing, and it runs in my family because, as I was saying, my mother is an author and illustrator of children's books. 

Jennifer: mm-hmm. 

Janie: and I'm actually 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 and like this my character's story is not really me is like it's fit into 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 basically 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 years no it's been more than ten years yeah ten years with them and then with the with the Boys and 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 mm-hmm yes no I have been with the Amherst PTA for ten years and a motto center for like eight or nine  I think.

Jennifer: I'm happy that you're able to use theater and writing as avenues to express yourself and be able to have some fun, and I enjoy writing too, I mean, you write.

Janie: Do you write poetry or anything like that?

Jennifer: um not really poetry but I guess for me writing is more like for blogs and for the podcast but I definitely enjoyed doing those because it helps me like it helps me when I'm if I'm really stressed out about a recent challenge I went through because of NLD it helps me kind of get it out of my mind and be able to not be as stressed out and let it go and that that helps me be able to process through it because I usually overthink about things too much so.

Janie: I do too, yeah, I hate that cuz like I think that's what triggers my anxiety the most, is like overthinking that, like somebody doesn't like you when they really do, that they're ignoring you when they're really not, stuff like that.

Jennifer: Yeah.

Janie: I feel like my anxiety got worse during COVID-19, too.

Jennifer: Hmmm, because of not being around so many people.

Janie: Right.

Jennifer: yeah I can definitely relate to that for me I overthink in similar ways to you as well and like like with one example with car accidents if 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 not be as anxious about it and I think the writing helps because then then I can just kind of process through it faster. Is there anything that you wish the world would know more about, NLD or cerebral palsy, or your visual challenge as well?

Janie: um I mean I think overall people just need to be more understanding of people's 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 really bothers me is that I follow a lot of YouTube channels that do like top 10 lists on movies and shows and cartoons and they mention in their top list videos that like NLD and autism spectrum disorders are like really dark and really 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 really bothers me as I 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 Josh and 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 really frustrated when I listen to all these videos because 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 being a dark being something that's dark or a 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 back to me which is really annoying so I wish they would reply but I don't want to bug them about it either because like that's the issue that I have had in the past like over contacting people when they don't answer my questions right away and that really impacted my relationship with a teacher I had once 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 us and it's 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 us. And that was mostly because of my disability.

Jennifer: Yeah, that makes sense to me, where, like you're saying, 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 would be easier for people to interact with 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?

Janie: It's just because it's not something dark or wrong with you. It's just that your brain is wired differently from the neurotypical.

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

Janie: Like, I'm really proud of my disabilities because they really make me who I am. But sometimes the thing that really frustrates me is simple misunderstandings that I may have with my friends because of our disabilities. Because that really bothers me. I feel like sometimes we get into arguments about really trivial things that can be solved really 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 bet the feeling is probably mutual there, even though they might not have expressed it to me directly. 

Jennifer: Yeah, I can relate to that too, where,e li, when I was talking earlier about my mom helping with finances, she and I can get frustrated over that easily because, like, 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 really appreciate all the work that she does to try to make it easy for me to understand. Because 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 what it's like to have a brain that's wired differently.

Janie: Yeah. Yeah, but there are some times when it is challenging. 

Jennifer: Do you feel like an LD, cerebral palsy, or visual challenge is a burden or sometimes in life? 

Janie: No, not really. I've never felt that way. 

Jennifer: That's 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 an LD and how to help myself out and help others as well by being able to educate them about an LD and how they could help me, I think I felt like it was a burden then, because it just kind of felt like, I guess you could say, got in the way of things. But not anymore. What else was I going to ask? For other people who are neurodivergent, what would you try to tell them as motivation when they might get discouraged about a mistake they made? 

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

Jennifer: I like that. Yeah, that's very encouraging in being able to stay positive. I would definitely say that as well. And being able to, 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 motivate myself and keep going. And then, do you have anything that you would say to people who think they're neurodivergent but 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 own challenges, and help other people who don't have NLD to understand the disability better.

Jennifer: Yeah, I would definitely agree with that, and being able to go get tested if you can find somebody to do that for you, because then you'll be able to 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 could apply because of 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 basically given to a person who works at Plus Company, who lives by the mission statement, and encourages other people to be their best. And I got that award because I'm always encouraging my other co-workers and the other clients at Plus Company. Like, for example, I taught a poetry class and a musical theater class in the adult education program at Plus.

And that really 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 I have, being able to encourage the clients and winning that award because of the encouragement that I provide to people.

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

Janie: What did you get your degree in? 

Jennifer: It was in sociology, which was, and I did a minor in 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 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 essays. So that made it easier because I had a challenge, and sometimes I still do, where 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 definitely helped because 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? 

Janie: Not right now, but I mean, if I come up with any, I can email them to you later. 

Jennifer: Yeah, of course. Well, thank you for letting me interview you today and for being able to talk about NLD, cerebral palsy, and your visual challenge. I appreciate it. 

Janie: Thank you for inviting me. I had it. I was really happy I got to talk to you today to spread more awareness about my disabilities. 

Jennifer: Likewise. 

Janie: Have a great night, Jennifer.

Jennifer: You too. Bye. Bye.