Compared to her Strengths

When I was in 8th grade, back in in 1997, I had one of the best neuropsych test results of my life.

Now that’s an uncommon sentence. The whole concept of testing someone’s cognitive profile usually doesn’t get people feeling excited. It is not fun to focus on your weaknesses, and of course when this testing is done for the purpose of learning disability evaluation it is usually not met with excitement and celebration. But there were parts of this evaluation that have been a major part of my NVLD pride throughout my life. You see, the person who did my three year evaluation at that time saw my ability profile in a way that no testing professional had before and, sadly, not since.

She compared my deficits to my strengths and explained that my deficits were disabilities because of how they effected my strengths.

This meant so much.

Still a bit confused? Well, I will explain it this way. Three years later, when I was a junior in high school at another school district in another town I had another 3 year eval. This time the test was not administered by an outside party. I took the test with my high school learning specialist. She felt my results showed that I did not qualify for services, in a way did not qualify as having a disability, because, she wrote, she compared my challenges to the average same-aged peer. She didn’t feel each specific skill area of nonverbal weaknesses were low enough compared to an “average” person my age. It didn’t matter how strong my verbal and social awareness skills might have tested at that time (they tested as superior and very superior respectively in 8th grade) but because my weaknesses were not considered weak enough compared to other people I was not considered needing the services that I, well, needed to increase my chances of a successful life in the future.

I understand this might not seem like a big deal to some, but it was huge for me. Years later, sometimes around 2009 to 2010, when I was unemployed during the recession, I was informed by a disability employment support professional that I was so hard for him to place in employment, to provide guidance on the right job for me, because of the combination of my “brilliance and my challenges.” Again, my disability was proven to come from the balance, the differences, of my talents and my weaknesses.

The more I explore my specific NVLD/dyscalculic/dysgraphic mind the more I see it come up again and again. I will have an area of skill in something, but in order to use that area of skill and talent I have to work around one of my areas of deficit. My success and fulfilment in my adult life often comes from finding ways to manage the area of deficit getting in the way of excelling in my area of skill. It might be challenges learning the step by steps and computer programs at a new job, having my writing slowed down and affected by spelling and grammar recall (or handwriting if I have to write by hand) or the delay I have in processing my own perspective when talking to others (my brain naturally focusing on other’s perspectives, and often later I will understand my feelings about something).

It is possible my high school learning specialist was correct. Maybe the areas of deficit really are not that disabling compared to the average person in each area of ability tested (except for maybe my fine motor skills. I can’t possibly believe that those are not that bad compared to the average person). But I am not sure how that distinction would benefit the neurodivergent person. I don’t live in the body of “the average person.” I live in my own unique NVLD/dyscalculia/dysgraphic mind and body. Every combination of skill and deficit effects the way I have to manage and live my life. It effects the way I show up in my relationships, it effects how I do my work, and manage my personal life. Each area of skill does not exist in a vacuum. They all come together to make me who I am.

Now, I don’t write this blog to process my thoughts on things that happened in my life. Well. Maybe I do a little. I think all those who write to be read are doing it because we have thoughts inside that we want to communicate outward into the world. But if I simply need to work through something I have a great personal and private journal for that. When I blog or write a post on the This NVLD Life facebook page I do it with a purpose. My intention is to put out ideas and perspectives on a person’s neurodivergent experience that I feel can help others. My hope is that the perspective I share can help in a few ways. I hope it can help other neurodivergent people to feel less alone, to grow in their personal neurodivergent perspective by hearing someone else’s (as other voices have been to me) and also to be seen by other people who have a more neurotypical life experience. I write for people in positions of power in society who might incorporate these thoughts into their work as managers, HR professionals, therapists, healthcare professionals, and also family members, coworkers, friends, and significant others that are in our lives.

I want people in positions of power in the diagnosing and evaluation of neurodivergent people to know that we exist as whole people. Our unique and less common minds (as neurodivegent people we all have less common minds) include a combination of talents and challenges and it does matter how they all fit together in us when it comes to how we live our lives and how much things show up as disabilities in our daily lives. I wish I would have had access to a professional like the one who did my testing in 8th grade during that crucial time in high school. I wish instead of pulling back on services when I was excelling academically, I received services that understood that I still needed help to be prepared for the life I would be entering into. I wish we had explored how my strengths and weaknesses would fit into adult life, how I could advocate for myself on the job some day (I was college bound all along). I wish I was provided some supports in how to plan out self accommodations through my life that focused on my strengths. My experience in services was only focused on making each deficit go away as much as possible, but nothing was done to prepare for how to manage the ones that did not are the ones that did not improve enough and will never get to that point.

I want better for the NVLD, all LD, and all neurodivergent young people that come along after me. We have some very unique and meaningful talents to bring to our jobs, and the communities we belong to. I want each of us to not be compared to our peers, but seen as our unique selves as we enter the world and make our unique mark.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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10 Things and 10 Things

My journey to pride and acceptance in my NVLD/dyscalculia/dysgraphia experience is unique to me, just as yours might be unique to you. We each categorize and think of our experience in unique ways, we have our own word choices we use to identify ourselves, and we have different ways that we feel our disability/nuerodivergence fits into the greater world around us.

Often I see a lot of perspectives that seem to me to express a right or wrong, an either or, way of looking at neurodivegence. Often, I don’t feel strength and empowerment in some of the ways that I see in neurodivgent empowered circles. Since some of it seemed to be presented in a right or wrong way I tried to change my perspective for a short time, to agree with the majority of what I saw, and it hurt me. I couldn’t express myself authentically. I felt guilty for how I authentically felt, and I thought if I felt that way, as someone who is decently empowered in my neurodivergence, maybe others felt that way to.

Now, I do not want to advocate for perspectives to shift from the ones that are not resonating with me and instead try to create a pocket of the movement where people are empowered in more similar ways to me. I want to express that there are many ways to think of ourselves to feel empowered and to create spaces where we can be different together. You can think of your NVLD, for example, as a part of you, or something that is present in all of you. You may be more empowered by person first language, or more empowered by identity first language. You may feel strength in the phrase that you don’t let your NVLD (dyslexia, autism, ADHD, schizophrenia, bipolar, etc.) define you, or you may feel that is does have a large part in defining you, but not only is that fine, it is wonderful and provides you strength. I want empowered neurodivergent people to have community, even if that looks different for the members of the community.

I feel there is value in different voices explaining how we got to a place of seeing our experience as a valid, human experience to feel pride in. But at the same time no one perspective is “right.” There is no one way to feel proud of being neurodivergent, nor is there in having a physical disability, or a health condition of any kind. When a person who chooses to speak up in a public way, in any form of art or medi,a shares their perspective we can take what benefits each of us and leave what does not. It is ok to see something that you disagree with for you but respect that it is helpful for that person. Even if it seems most of the empowered voices, or even your favorite voices, see things differently than feels right for you, that does not mean you are empowered in the wrong way.

The way I feel empowered includes naming my challenges, it includes using words like deficits, symptoms, disability and disorder for the parts of my learning disabilities that feel like those things to me. I feel more empowered when I throw it out there that I have specific limitations that are not necessarily common. I like to identify with a diagnosis, because accepting that it is as real as any medical diagnosis feels empowering to me. But on the flip side I also see my NVLD mind as the reason for my talents. I see those aspects as things I am very proud of and things that make me happy to be an NVLD-er.

**Note** keep in mind as you read this that not every person who NVLD has the same profile as I do.**

The way NVLD was described to me when I was diagnosed, and the reason why it was such a validating experience or me, is that it is a learning disability of the nonverbal skills, and often a strength in the verbal skills. My whole life made sense in that moment. Sure, my testing had always showed a major gap between my performance (nonverbal skills) and my verbal skills, but to have a name for my brain experience, and have it be simply that I had a learning disability of the nonverbal skills (and considerable strengths in the verbal and interpersonal skills) felt so validating. My talents are as much a function of my NVLD as my disability is. Plus, at least with the research at the time, it was thought to be a less common learning disorder than others, which helped me to realize why it felt like I was just… backwards. I was different than the typical kids but I also felt different then the other LD kids (most with a dyslexia diagnosis, it seemed). I felt different because, well, maybe I was. Maybe my small school class of 20 kids that I went to school with from kindergarten to 8th grade didn’t have another NVLD-er in it.

So, since naming the good and the bad empower me, here is a list of 10 things I do not like about my NVLD, 10 disabilities I have from it that I wish I didn’t, and 10 talents and things I like about myself that I also feel are directly related to my NVLD mind. Do you have 10 and 10 for your neurotype? Is there a completely different way that you feel empowerment?

Every type of empowerment is valid.

10 Things I don’t like about my NVLD:

  1. I cannot draw or create visual art. People often say you don’t have to “be good” to create art, but I feel upset when I try to create art, not because I care if it would be considered “good” by others standards, but I cannot create what I want to create. I don’t like the feeling of focusing on my fine motor challenges and my spatial issues. It is exhausting and frustrating. I cannot figure out how to place images in a page because of my spatial skills, I don’t think visually and in images to come up with ideas, and my fine motor skills causes me to not be able to create lines and shapes in the way I would like. I do wish I could draw and create visual art. I think it would be a form of expression I would love and a way to process this world. But it is not something that I am able to do. And that is ok.
  2. Write music or play an instrument. I know some other NVLD-ers have skills in music. My fine motor skill challenges get in the way of playing instruments. I tried drums for 12 years between middle and high school and finally stopped because I hit a wall with learning. I could teach myself the movements and work really hard to do them all at the right times, but I couldn’t just.. jam. Not the way an actual drummer does. I would have to painfully memorize the movements. I even tried an independent study in music theory and song writing in high school, thinking maybe I could learn in an intellectual way and use a computer to compose. I never could understand how music works. They say music and math are connected… and my dyscalculia is very significant so maybe that has something to do with it. I’ve been told I cannot carry a tune at all, and I have no idea how others do.
  3. Handwriting. Sometimes I make it a joke, sometimes I feel embarrassed. People notice. Former bosses have noticed. People make assumptions about you when you have poor handwriting, especially as someone who presents/ is a girl or woman. It also makes it challenging for me to write notes I can read, and I learn best via my notes. When I was a reporter I had to write my stories when my interviews were still fresh in my mind because I would still know what I meant when I wrote my notes. But if I waited to long…my handwriting…
  4. I wish I didn’t have to learn new jobs in a specific way. Its stressful to figure out how, when, and in what way to explain how I learn in an employment setting. I am currently in a great company for my needs, but I have had such stressful experiences where there was not space to learn my roles in the ways that worked best for me. It is upsetting when people flat out refuse to train the way my brain processes. I am an ambitious person and will not let anything uncomfortable stop me from what I want. But, good gosh, supporting yourself is such an important part of your life as an adult. The stakes are high.
  5. Cooking. I do not care too much about cooking. But I would like to invite people over for dinner. I would love to have a signature dish to bring to events, and I would like to feel less dependent on others (love you, husband!) in this area. My significant fine motor challenges get in the way of much of the prep, and it is all step by steps, math, and all this nonverbal thinking.
  6. Holding numbers in my head. I’ve wanted to start businesses in the past, even had moments (thanks to disability employment professionals literally telling me so) where I believed the only way to support myself sustainably would be self employment, but not being able to hold numbers in my head is a major barrier.
  7. This isn’t something about myself, but I don’t like that so many people do not like wordy people! I don’t like that I sometimes have to hold back who I am because others don’t like too many words. I really hurt myself in middle and high school by holding back my wordiness, actually becoming nearly silent, all because I knew people often do not like wordy people. Want to know my childhood favorite Star Wars character? C3PO. That overly verbal robot annoys most people, everyone loves the beeping R2D2. I want words! Words are my window on thought, on the world, on solving problems. I hate to feel I have to hold them back because it annoys people. There is so much to read, hear, so much to say.
  8. I wish I could be independent with home or yard repairs. I wish I could attempt to do these sorts of things without waiting for someone else (again, husband win!). I wish I was better at finding things, or better at putting things away in a manner that utilizes space. I wish I understood how objects fit together so I could loud a dishwasher better, or pack the trunk of a car.
  9. I wish I could park better, that I could parallel park in the way we are taught.
  10. I wish I could be better at athletics, I wish with hard work I was capable of getting better at athletic things I wanted to do.

I feel it is ok to name that these 10 areas are challenging. That they do effect my life, some more practically, and some in self fulfillment, but all do have an affect on my life. I feel it is ok to feel some sadness about these things. I feel it is ok to identify as someone with a disability because of these things. Because they are disabling. I also think there is nothing wrong with being a disabled person and we have as much right to be a part of this society as anyone else, not in an othered way, but equal and often as leaders.

10 things I like about my NVLD:

  1. I like that I think about many things at once. My brain is always thinking about multiple things most of the time, and it’s fun and helpful. It is interesting to me. It stops me from feeling bored, and it allows me to come up with creative ideas and make connections with other thoughts.
  2. I like that I am able to put things into words that can be hard to put into words. This comes about because I truly don’t understand something unless I can put it into words since my verbal processing is so much stronger than my other processing. As a result I often put things into words that those I am communicating with have not been able to do so before. I have had a number of times over my lifetime where I have been told I have helped others to understand things with this ability.
  3. I love that I have had a number of experiences in my life where I have been told I was a talented writer. Sure, there is the recall with spelling and grammar. I just think verbally faster then I think in spelling and grammar. But the actual talent part, I feel I have that. And I love it. It is my outlet. I have written plays, stories, journalism pieces and essays. I love creating the worlds. It is my passion.
  4. I love that when I talk to someone they are the most important person in the world to me. I love that I have such a strong ability for empathy and that people make so much sense to me so much of the time. I truly love caring about other people and learning about other people. I like that I am able to see the perspectives of people that are different then mine and understand them, even if I don’t identify with them.
  5. I love that I am able to think about the big picture and the systems the make up our world and that with little effort I am always thinking of ways to improve upon things.
  6. I love that I’m interested in so many different things, that my mind is always seeking to learn new things and expand my perspective on the world around me. I love that I have a mind that always strives to grow.
  7. I love that I have the ability to capture who people are. When I was a reporter I used to be able to truly capture that people I was writing about, who they were, what they were doing. I love being able to truly understand people and use words to bring them to life.
  8. I love that I am wordy! I love that I can talk about things, I love that words bring me so much job, that conversation brings me so much joy, song lyrics, reading, podcasts or wordy television and movies and bring me so much joy. I love how extremely exciting it is for me to take in ideas and conversation through the written and spoken word.
  9. I love researching things, people, places, concepts, I get interested in.
  10. I like that my brain is not satisfied with the status quo. If something is not working I want to do something about it.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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What Good is Feeling Bad?

Self improvement? I’m just over here, living my best life!

I turned 40 today.

There is a lot to process with that. I enter another protected class, along with my gender and disability status, in employment law. People have opinions if I chose to have children at my age. As much as people reply to emotions about turning 40 with a dismissive attitude, there are things to feel about it. And those feelings are valid.

But beyond the emotions set up in those areas, I believe as long as we are all here living life has not past us by. We can still achieve goals, and live dreams until, as one of my good friends puts it, we lay down for the final dirt nap.

In my 40s I want to work to push down the perspectives around me that hold me back. My mind processes other people’s feelings, thoughts, emotions, and prospective faster then mine. I immediately understand and think about where you are coming from. Your feelings and needs flood my mind and I care about them so much, I will accommodate them and forget doing so tramples on mine.

In my life this has lead to many times putting others needs ahead of my own. In time I usually see my own side and can balance it with the other person’s perspective, but by then many people don’t listen as well. I have had moments in my life where people tell me the issue is over and they are not going to revisit it, or that people just don’t make space for my side as much when both sides are not processed in the moment.

This happens due to my own neurodivergent brain, and like all aspects of my neurodivergent brain, I cannot make it stop happening. I cannot learn to be better at processing my needs in the moment, just like I can’t suddenly have good handwriting, strong spatial awareness, good fine motor skills, or develop a strong visual memory. I feel strongly the days of lessoning or making the disabilities of my NVLD go away are over. Each of us is allowed to be at any time on any part of the balance between making a challenge go away and accepting it just is an area of disability, and I am most empowered by accepting where my disabilities fall at this point in my life. I was hurting myself when I still saw it all as something I needed to make go away as an adult. Trying to make it go away was getting in the way of my succeeding in my life. My perspective is allowing me to succeed and be well.

At 40 and going forward I choose to accept that I will not be able to process my needs in the moment. If possible I will ask for the space to process my side later, but even that ask can be hard to process in the moment when my brain is only processing the feelings, needs, and emotions of the other person. I pledge to do my best to go back and explain when necessary, and not to beat myself up for this, not see it as a a moral failure or that I am a bad person because I came back with my needs later.

In my 40s I want to continue to weave activism for neurodiversity into my life. This has been the most consistent thread in my life since I was a child. Something felt wrong to me about how learning disabilities were treated, how the voice of the learning disability perspective was outside of popular culture discussion (didn’t see movies, shows, or media about main characters with learning disabilities, societal discussions did not seem to focus on adults with our experiences, etc.). I also felt when it was discussed the stories were owned by parents and professionals, and various other people adjacent to us rather then from our own perspectives. I wanted to speak up as just another person, a person with some experiences and needs that this world didn’t often fully make space for.

I am reading a book now called The Lightmaker’s Manifesto by Karen Walrond. I shared it on one of my This NVLD Life facebook page posts. The books is about fulfilling activism in your life in a way that brings you joy. I needed this book right now. Being an aware participant in the neurodiversity movement has caused me some distress and pain. During the pandemic, as I jumped in to creating this blog and the facebook page after choosing a career path that balanced my life needs but took my away from working in social services I was directed by a friend to a neurodivergent advocate’s page. From there I started following more voices in the online side of the movement. I’ve mentioned that journey a few times here. I honestly think some of the best work is being done online right now (and in podcasts). I hope books and movies start coming out soon from these personal perspective, but right now the voices are coming out online, where there is less editorial barriers making assumptions on what people want to hear. In many ways this journey I’m on online has educated me on the experience of other neurotypes/diagnoses that I had never fully been aware of. In other ways, though, it has been a harmful one for me.

I am often empowered by different things than seem to be the norm of what I see online in the movement. I do like the terms disorder and disability. I know many voices also like the term disability, but disorder does seem to be pushed down for words such as differences. Even as a child I didn’t like it when people started referring to to “learning differences” instead learning disability or learning disorder. I felt like it was more than a difference, it was something that has needs just as as hard stop as any medical condition. Disorder and disability felt like facts to me, not words that held negativity. They were neutral in value and morality. I was the daughter of a pediatric nurse, I grew up with a lot of awareness of life that included managing health conditions. My learning disability, my neurodivergence, was a similar experience, it seemed to me.

I do think my NVLD, dyscalculia, and dysgraphia are disorders. They are not allowing me to do some things I want to do, they are making it harder for me to do things I need to do. They do effect my life in a way that has hurt me in significant ways. But seeing it that way doesn’t take away from fully accepting myself as valuable exactly as I am. I don’t think seeing myself as someone with a disorder is in contrast to my being just another form of normal, a valued member of society, or any other reason that I often see some people try to move away from those terms (especially disorder). I do see some parts of my neurodivergence as medical. I don’t see that as a contrast to the fact that I also subscribe to the social model of disability. Life as a human being is nuanced.

I feel different diagnoses are important. I as I scroll I will often see the idea that having different diagnoses and names is harmful and we are just neurodivergent. I think having different names and diagnoses allows for the very different needs we have to be fulfilled. I often need different if not opposite things from autistic, dyslexic, or ADHD people. I have often felt harmed when people saw my challenges and assumed what I needed was something that would serve someone with these other neurotypes/ diagnoses (I use both the terms neurotype and diagnoses because I like both and because I want people who feel more comfortable with either one to feel a place here).

I feel strongly that having a name for what I have and how it stands apart from other people who think differently is important. Getting my NVLD diagnosis has been an amazing gift. I finally felt it all made sense. Everything came down to a deficit (and again, I do prefer to use words like that when talking about the challenges, because to me it feels empowering) in nonverbal skills and a talent for verbal skills. My life’s path made sense. It hurts when other neurodivergent people disbelieve in the existence of NVLD and claim I am someone who just doesn’t want to believe I am autistic or ADHD.

I often leave my neurodiversity movement social media scrolling feeling angry, guilty, like I don’t belong, and afraid. Afraid of what? Afraid expressing the things that I feel can make a difference to put out there, thoughts that may be a slightly different perspective, will be morally attacked, even vilified. I am motivated to be the change I wish to see in the world, however. If I feel this way I can’t be the only one. There has to be other neurodivergent people who need the similar perspectives I do to feel empowered in the neurodiversity movement.

As I enter my 40s I want to be brave enough to be the change I wish to see in the world. I want to create advocacy and activism from one perspective that realizes there is not one way to be empowered as a neurodivergent person. I want to return joy to my work towards neurodivergent activism. I want this work to fill my cup, to fill my life long need to speak up for this without harming myself or letting in harm. I think I can bring joy back into my passion for neurodiversity, and I think my voice has as much value and has a place in the movement as any other.

Thank you for going on this journey with me. The world needs each of us.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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Alleviating Barriers

One time, n high school I was reading an article, I think it was a Q and A, about a local high school girl who had the opportunity to take part in some type of national teenager leadership program, Model UN, or something similar. A big part of the article was about how this person was a lower income straight A student and the reason she went was because her school sent her for those two reasons. As I read the introduction I thought about how much I would have been interested in that opportunity. I couldn’t wait to read her thoughts on the experience.

As I read the Q and A it didn’t seem to me that she was as excited or enjoyed the opportunity as much as I felt I would have. From my perspective at that time it didn’t sound like she wanted to be involved in the program. I would have been so excited for the opportunity, but I knew I would not have been chosen by my school. Now, as an adult I can understand what I was seeing as a lack of interest from this young person could be for a lot of reasons. We were from a very rural area, and she was thrown in with other kids from many different places, with vastly different life experiences from hers. Plus, there is so much pressure being a young person in her shoes. I did not know what kind of pressure she might be under from her family, from the school, or pressure she might be putting on herself as a high performing student in a low income family situation who potentially was provided an opportunity that she may not have asked for.

But teenage me had a specific feeling in the moment. People in leadership positions in my region understood that family income could be a barrier to opportunity and achievement for a talented and promising young person. The people in my region valued alleviating this barrier for high performing students. Which was wonderful. But teenage me saw a blind spot. That the future leaders that we as a community wanted to invest in were academically high achieving students, as measured by GPA.

Scholarship opportunities and leadership opportunities like this are not as often offered to students whose grades aren’t high but she a lot of ambition and interest. Because of my learning disability I was never able to get straight As. In my case by high school that was because of mathematics. I had to really zap up all my spoons, and often cause myself a lot of stress and other blows to my mental health to get a C in math. I had to attend every student support time offered to me, I had to have a student volunteer tutor (the worst was my senior year when the tutor was two grades behind me, in my younger sisters class. When you are 18 and heading off to college soon it is hard for the ego to be “taught” by a 16 year grade). My school had block scheduling, which meant our classes lasted through a semester and were longer blocks of class at a time, each semester of the year we would have an entirely new set of classes. I would try my best to have only easier (at least easier for me) courses during the semester I had math, I was more likely to hurt my mental health than to let math bring down my other grades, but I am sure that I would probably have been able to get a few more A’s than B’s if not for math.

High school me felt that it was important to understand that leaders across the world had learning disabilities. I had gown up hearing about top leaders with dyslexia, Charles Schwab, Richard Branson, author John Irving, and so many others. These leaders were successful because of, not in spite of, their different minds. I don’t know there full stories, I don’t know how they rose to the top in leadership roles despite the set backs they might have experienced as young people who thought differently, but I image there were support systems and opportunities took part in their stories that alleviated any barriers their challenges in traditional academics. Imagine if we invested more in kids whose barriers to success might be struggles with the traditional school system, kids that possibly never started to those As.

Imagine if we saw the potential in a smart kid whose intelligence did not show up in a GPA or an IQ test with all aspects of intelligence bundled together in the high end. What if leaders in my community, or any community, took the time to not only use across the board measurable systems to judge ability and intelligence to assess what promising youth to alleviate barriers for. Maybe a student would be a good candidate for a program who does not have high grades, maybe another student would be a candidate for a need based scholarship who does not have a high ranking GPA. What if we step back and see the whole young person and alleviate the barrier that comes with not being able to obtain a high GPA. It will take some work and more thought to alleviate this type of barrier, but it is time to start investing in and supporting the leadership potential in our students with learning disabilities and other neurodivergent students who do not shine on paper in traditional ways.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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The Neurodivergent Experience

Imagine one day you woke up in a world where most people, the average person, was an astrophysicist. The abilities, experience and knowledge these scientists had was considered common, and the average person thought these things were very easy things to learn and put into practice. Imagine you headed off to work and you had to be an astrophysics with everyone else. You’re motivated and want to do a good job, want to hold down your job, and be a averagely successful person, but every day is so very challenging. You have to think 10 times harder then everyone else. You are so tired at the end of the day it is hard to do the things you are good at, or to put time into things you enjoy. Other people assume you have the knowledge, experience, skill and training that they do, because it has never occurred to anyone you know that not everyone is an astrophycists. Perhaps you even think you should be one, even though you have none of the training or experience. You think you should be an astrophysicist because everyone else is.

This is a helpful way to think about the neurodivergent experience. I may be an NVLD-er, you might be autistic, or ADHD. Or perhaps you are dyslexic. Maybe you experience psychosis. Whatever it is, your mind works different than other people. Maybe the things you are good at and the things you find challenging seem to be very different than most of the other people around you. Maybe you have struggled with feeling negative about yourself because of your weaknesses in what seems to be uncommon areas, or at least uncommon areas of weakness for someone who has your strengths. Maybe, sometime on you path through life people have assumed you were lazy, passive aggressive, or wilful for these challenges by people in your life that can’t understand your spikey profile.

The neurodivergent experience is not as simple as the same ability profile, or a shared way of experiencing the world. It is completely possible for a neurodivergent person to not understand another neurodivergent person when they have differing diagnoses/neurotypes. The neurodivergent lived experience is one of shared differentness not always shared similarity. It is the experience of having abilities that are different then what is common, different than what a majority of the people you may come in contact with are able to understand.

This is one of the major reasons why I have wanted to be open and speak up about my own neurodivergent experience since I was a child. I wanted to speak from my perspective and encourage people to seek out other people’s neurodivergent experiences as well. That’s why I share non-NVLD neurodivergent voices on the This NVLD Life facebook page. I can only directly tell my story. My story holds value. So do others’.

In my ability profile from my testing it displays that my weakest area is fine motor skills. I struggle significantly with working with my hands. Followed by visuospatial skills. People have defaulted to assumptions that I have the same abilities in these areas as they do and have come to conclusions about my efforts or my “negative attitude.” The “negative attitude comes from my choice to respect my can’ts. Some without my specific neurodivergent profile see me not performing these often simple-to-their-experience tasks at the level they feel someone as well spoken and seemingly intelligent as I am should be able to perform and they assume a character flaw. I’ve gone through bouts where I thought maybe I did have a bad attitude, or that my issue was I was just weaker then everyone else, that everyone struggle with these things just as much as me but I was the only one being a baby about it (even though the only one I was “being a baby” to was myself).

As neurodivergent people sometimes being diagnosed can be extremely validating. I was diagnosed via a neuropysch exam, so not only did I cover a certain number of check boxes, but I have a report of all my scaled abilities. I can see how spikey my IQ scores are. A doctor validated my experience, I do not have the same ability profile as most of the people I will come in contact from day to day, with most of the people I compare myself to. In fact my paperwork states the gap in my verbal and nonverbal skill set is only seen in 4% of the general population. And since most people are not educated that other people can have such vastly different ability profiles as someone else, with significant gaps between their strengths and weaknesses, I am going to have to live in a world where people are going to not understand my experience. Some will if I explain it to them, some won’t even then. Those who don’t may just have trouble believing me that people can be that vastly different in their abilities, other’s will be sure that I am making excuses so I can require less of myself, or, as one person called me once after I used my ability profile as an example of a point I was making about neurodiversity, a “special flower.”

It is funny to me that people would assume I am trying to make excuses or that I am milking a diagnosis to not have to work as hard in my life. I don’t shy away from hard work in the slightest and never have. I have been consistently ambitious all my life. I do feel that in order to achieve my goals I need to compensate in my life for my weaknesses in nonverbal skills, and I fully believe sometimes that means finding ways to avoid using those skills too much in my life and instead falling back on my talents. Filling my life with to much of my areas of deficit use up my spoons. I am less able to be successful in my goals, less able to have the energy to use my talents at their highest level, and less able to have good mental health.

Many people are often bothered when they see someone show up for one thing in their life and not another (please note: I am not talking about showing up for a person with this statement). I may be willing to do something that will be temporarily harmful to my mental health and zap my ability to do others things temporarily to achieve a career goal, but I’m not willing to harm my mental health or use up my spoons to load the dish drying rack in a way that utilizes space most efficiently (something that is honestly exceptionally challenging for me). And it is not possible for me to do both during the same time period. I need to pick and choose in what ways I will push up against my areas of deficit in order to show up in this world, and I need to be surrounded most closely by people who accept that. It is more important to me to reach as close as I can to my highest aspirations while being the most emotionally healthy as I can than focus on parallel parking or handwriting skills, which might not improve at any measureable amount at this stage in my life even if I devoted much of my daily life to them.

Every neurodivergent person has a unique neurodivegergent experience. Some of us have different neurotypes/diagnoses, Some of us have combinations of different diagnoses/neurotypes, and even those of us that have all the same diagnoses on paper (and all accurate diagnoses) can fall on different spectrums in each criteria of a diagnosis. There are NVLD-ers out there with much more mild deficits in fine motor skills than I. I know NVLD-ers who are good at knitting and cooking. I have cried over cutting vegetables before, hungry and tired because I won’t be eating the dinner I am trying to make until 10pm because of how long it’s taking me to prep with such poor fine motor skills. On the flip side, there are many NVLD-ers out there who will struggle with reading comprehension or following a movie plot, something that would have not occurred to me as something that could be challenging if I had not read about those experiences from others. This is why some of our worst critics, some of the people who say the most hurtful and damaging things to us can be other neurodivergent people who have different ability profiles.

But it doesn’t have to be this way. The pandemic has been a perfect time for more neurodivergent voices to ring strong. I have learned so much about ADHD, autism, and schizophrenia lived experience from some amazing voices. I have mentioned them in past blogs (see A Place In the Neurodiversity Movement from 12/8/2021). These are experiences so different than mine that I would never have been able to know if people hadn’t spoken up. The more we speak up, the more other neurodivergent people understand each other and can therefore support each other, the more people who have the more typical minds can listen and neurodivergent and typical leaders can take the neurodivergent experience in mind in all aspects of society. Being aware of these diferences will allow to to reach our goals at our highest levels while being mentally well.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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Imposter Syndrome and Neurodivergence

At one of my past successful jobs. It was a start up in creativity education for children. Our director was doing a documentary on the beginning of the organization.

The other day I had my yearly review at work. Counting the four months I was a temp, I have been with the company just over two years. Now, yearly reviews can be a stressful thing for many employees. Any type of evaluation can be stressful, especially when you are someone like me who consistently puts my best efforts forward and takes doing well seriously. I wasn’t nervous, however.

I know that my supervisor and other leadership at my employer values my efforts and talents. I know they appreciate my care to my core job functions. I know they believe in my ability to take on special projects and have really respected and appreciated the work I have done in those projects. I know they value me as an employee and that they support my continued career in the company, wherever it may take me. I finally feel I’ve reached my goal of ending up at an employer where I can stay to grow my career. I no longer have to change employers to get to where I want to be.

So why do I still feel like an imposter?

So many of us have been there. We just received a promotion, a new job we thought we were a long shot for, or got into our dream school. For some it may be that they got published for the first time, heard their song on the radio, or found out the work they are doing is getting a lot of buzz in their industry and they are thought of as an up-and-coming leader in their field.

In these moments we’re on the top of our game and other people we respect are noticing! But why do we have this nagging feeling of self doubt that we just can’t shake?

Imposter syndrome is a well known phenomenon that is felt by some of the most objectively successful and well known figures in our society, even in history. We can’t seem to shake that we are not as competent as others believe us to be. For most people who I have heard of experiencing this would have outsiders without a doubt telling them of course they deserve it all.

But as a neurodivergent person, specifically an NVLD-er/dyscalculia/dysgraphia person it isn’t as simple that I have experienced the people on the outside seeing me the way my current and some of my past employers have seen me. I know there are some people who would see the same things these others have seen and not think of me as deserving of these accolades.

My neurodivergence itself feeds into my imposter syndrome. It makes me wonder if I really am competent and what some of my past and current leadership and mentors have thought I am, or if I am someone who is just doing a really good at hiding my disability. In my life I have been told by multiple teachers, including the toughest journalism teacher and toughest creative writing teachers I had in college, that I was a very talented writer. I would love to fully believe them, to hold on to that, to go there in my mind when I am feeling self doubt in another area “this may be challenging, but I am a talented writer, I am someone with something to offer this world.” But there is one problem with going there in my mind: Spelling. Grammar. And, sometimes, handwriting.

I can’t get away from the fact that I sometimes create clean copy, sometimes don’t. I can never tell the difference unless I set my work aside for a couple hours, or even days then look it over again. Of course I use spelling and grammar check, but errors will get by, or the programs will create whole new errors from my mistakes that I don’t see. My brain doesn’t see the errors until I have stepped away from the writing for a bit. And, honestly, I don’t know what is is the reason for these errors. It is not specifically part of diagnostic criteria for NVLD. I have researched dysgraphia and sometimes I find that spelling and grammar issues are part of that, and sometimes I hear it is simply handwriting, hands getting sore while writing, and finding it hard to write handwritten copy. I don’t especially get hand pain more than the average person while handwriting, and I often think of my writing issues as other’s peoples problems in the sense that it bothers others, not me. what I mean is I do not find it hard to write by hand, it’s just hard to read for other people. My only other neurodivergent diagnosis is dyscalculia, which shouldn’t effect these skills. But regardless of what the reason for this challenge is, it is there, and it effects an area I would otherwise be able to escape to to feel fully capable, intelligent, and competent.

I know that during those many times in my life that my writing talent has been complimented a whole bunch of other people out there would laugh at the idea of calling me a talented writer. Some people, including editors and employers, will never consider employing someone who is not able to consistently create clean copy. Those leaders would never put the moniker of “talented writer” on someone like me. Because of this, as my life has progressed I have moved away from careers specifically in writing despite my major in journalism and minor in writing (creative writing). I understand that I could be hired and respected in my role by a hiring editor, but if leadership changes I could loss my job under the leadership of another. I am very proud of the work I did as a newspaper reporter, but when I found myself in a crossroads during the recession back in 2009, I decided to find a career direction outside of writing. And for 10 years I held back in creating this blog because I more often then not couldn’t afford, or when I could, couldn’t justify paying a copy editor. Many people will tell you to find a friend or family member to look over your work. I found that to not be a realistic solution. It is a lot to ask of someone without compensation. It held me back until I finally came up with the idea for the disclaimer that I put on the end of this blog every post. I always do my best to proofread, but what goes to publication is what is going to go to publication that week. Besides, this blog is intended to be from a pro-neurodiversity perspective. I want to show people what that means from the perspective of one neurodivergent person.

Will some people who might otherwise enjoy This NVLD Life be turned off by the errors?

Yes.

Might some of those people turned off by the errors being neurodivergent people themselves?

Yes. Very much so. Many nuerodivergent people have a talent for spelling and grammar, just as I have talents in arrears many other neurodivergent people don’t. And many can’t stand reading copy with errors.

But these types of errors are part of my authentic neurodivergent experience. If someone cannot read this blog because of the errors, well, they are not the audience I was meant to reach that day.

Even with the most positive attitude about this I still find the nagging feeling of Imposter Syndrome kick in when I find myself proud of my writing, or hear someone compliment my talent. I think about the voices of those who would never call me talented because of my challenges with creating clean copy. People that might chuckle if they heard someone describe my writing so positively.

I have had the most diverse career experience riddled with imposter syndrome. I am a very driven, ambitious, hard worker. I have a lot of talents in… well, writing as we’ve stated, but in many other areas, in assessing the needs of a person I am directly working with, collaborating creatively with others, in solving problem creatively, in thinking about systems and how we can makes things work within a greater system. I take work seriously and put in necessary time and energy to do a good job. When I first graduated college I was ready to take on the employment world and was confident I was going to have a successful career.

But as I have mentioned before on this blog, my challenges in learning the step by steps and computer programs of a job along with my spelling and grammar issues, has lead to job loss, usually within my first few months on the job. This has occurred many times since I started working. I wish I could say it was something that only occurred in my mid 20s after college and that after I got diagnosed with NVLD at 28 I no longer had those problems, but my most recent challenge occurred as recently as two years ago. Yet on the flip side, I have been a top employee many times as far back as my mid 20s, after college, as well.

I am very happy at my current employer. I wish I could find a way to forget all of those challenging experiences and only remember the ones where I was such a valued employee. I wish I could forget all those moments that I could tell people thought I was less than because of something I don’t do or don’t do well because of my disability. I wish I did not have to contend with the imposter syndrome that has manifested from my neurodivergent experience of contending with vastly different opinions from others. There are just as many experiences of high achievement as there are the challenging experiences. How can one person have had such extremely different employment experiences? I am the same person with the same talents and the same disabilities wherever I go. I bring the same work ethic and desire to succeed to every job. I know my strengths and weaknesses and choose my employment accordingly. The sorts of jobs I have excelled in and the jobs I have lost have utilized the same skills. Choosing the right employer is not something I can easily predict by simply being aware of the tasks and nature of the work. How is it that when I succeed I don’t just do fine, I excel? Am I an imposter? How can all of these extremely varied experiences come from the same person?

I think many neurodivergent people have had these types of experiences. When you are so good at some things and struggle so much at others it is not surprising to have such extremely varied experiences of not being able to hold down or excelling at jobs but also having to process through having those outside of you holding vastly different opinions on your abilities. Knowing some people out there would never think someone with our ability profiles are talented can lead us to feel we do not deserve the strong performance reviews, promotions, and special opportunities that come our way. These successes are things other equally hard working and equally talented employees may feel they rightfully obtained. When you have just as much history of not being good enough to keep a job as you do being a top employee in multiple fields (in the same fields you struggled in) it can be hard to rectify those extremely different experiences. But in the end, it’s the places of work that value what we each bring to the table that create the environments where we shine. I hope as we work neurodiversity and disability into more and more DEI (Diversity, Equity, and Inclusion) workplace initiatives it will lower instances of this very neurodivergent/disability specific experience with imposter syndrome.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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A Place in the Neurodiversity Movement

It’s hat season again!

I joined tiktok the summer of the pandemic.

I hadn’t really had interest in it. Facebook was and still is the only social media platform that feels like home, a place where I express myself in ways I have not been able to in other aspects of life.

I am in my late 30s and had brushed it off as something for the younger crowd, 20 somethings, teenagers, certainly not me. But one day I was talking to a same-age-as-me friend who was looking into an ADHD diagnosis and they found tiktok to be really great for ADHD and neurodivergent voices. I had not long before read on a post from a college classmate that he found tiktok to be a wonderful place to see young people being open about their disabilities. With these two recommendations in mind I jumped on the platform and started following neurodivergent and disabled voices.

At first I found it to be weird, with the pop ups and close ups. But soon I was really enjoying it. There were some really great neurodivergent perspectives on the app. Strong, confident voices being open about these aspects of their lives that not long ago people were taught to hide from the world. I thought about how just like written social media had given a voice to those who communicate better in writing tiktok was giving a voice to neurodivergent voices who communicate better in the spoken word or video medium. These people were sharing some big ideas and getting some important points across.

We hear so often about how terrible social media is, and how it has caused more harm than good. I cannot agree with that. Seeing creativity and ideas from so many voices who may have not otherwise been hired, given an opportunity to audition, or published in traditional media now have an opportunity for a platform to reach people is a wonderful thing. And the way these people are moving society forward! I am so thankful these platforms were created. Neurodivergent voices are being amplified by removing the various barriers that were keeping us quiet. Some, like myself, are amplified by the writing nature of facebook or perhaps twitter, and some need the barrier of writing to be lifted to share their voice.

This all happened about the same time that I started this blog and started following more neurodivergent voices on facebook (later, when some of the younger voices were migrating over, I would start actually logging into my instagram that I don’t remember how I have to follow neurodivergent voices I couldn’t find elsewhere. I still don’t “get” instagram. I’m not a visual person, so that is probably why. I am there for the words of those I follow. Ironic, I know). I had read many first hand account books and articles on what is now known as neurodiversity (books and essays written by dyslexic people, other LDs, ADHD-ers, autistic people, etc) since I was at least a teenager but I hadn’t realized the rich world of advocates on social media until that time period in 2020 when I choose to be one of them.

For a while following these neurodivergent voices on social media platforms became an extremely important part of my pandemic life. Most of them were autistic voices, (many ADHD and autistic) some ADHD, and I also started following schizophrenic voices as well. At first it felt so amazingly validating. Here were so many people talking about the realness of neurodiversity. How it effects our lives, how people disbelieve it’s existence and most of all, the empowering discussions of self acceptance. I thought I had accepted myself fully since at least my early 20s, but here were people on three social media platforms celebrating parts of themselves as wonderful that I had seen in myself as not bad, as alright, as perfectly fine. Loving myself for the beauty of my differences feels stronger and more empowering than simply seeing it as not a bad thing. The most locked down parts of the pandemic was my neurodivergent acceptance awakening,

I finally became brave (and bored) enough to start this blog, and because of The Neurodiverse Woman (facebook), NeuroDivergent Rebel (facebook, instagram, tiktok and, I believe, twitter), ADHaDult (tiktok, instagram, facebook), Authentichai(tiktok), SchizophrenicHippie/Kody Green (tiktok, formally Criminally Mental Podcast), Catieosaurs (tiktok, instragram, Infinite Quest podcast), Michelle Hammer of Schizophrenic NYC (facebook, instagram, tiktok, A Bipolar, a Schizophrenic, and A Podcast), Spectrumy (facebook), Cecelia_McGough (instragram, formally Schizophrenia in the City YouTube channel with Michelle Hammer), and adulting_with_autism (instragram) were my new group of friends, I mean, after all I was really only seeing most of my real world friends on screens anyway. Most of them also received their neurodivergent diagnoses as adults just as I did (even though I was diagnosed LD since I was 5).

This group was not the only advocates I started to follow. I started becoming active in the comments and discussions on a lot of neurodivergent pages. I started my own advocacy facebook page named after this blog, This NVLD Life. I thought about doing an NVLD tiktok. I found my people, right? I would be accepted even though my NVLD perspective may be different than these more common, more known types of neurodivergent people, right? I was really excited to finally have an outlet to fully be myself.

But then things seemed to change for me in those comment threads, (mostly on pages I did not mention here, and none of the advocates I mentioned here have ever made me feel unwelcome). I started off thinking my slightly different NVLD perspective had a place in these discussions, to feeling unwelcome in many of them, even too neurotypical (even though I am not neurotypical I am neurodivergent in a different way. I’ve been told or watched other people who make similar comments as I would that those statements and communication styles are “neurotypical” by some people in comments) because of my communication style. After seeing some of these comments on advocate posts across social media platforms I chose not to do a tiktok. I just couldn’t imagine putting my face in video form and my actual audible voice in such a rough environment. People who I would think were my community would tear apart my full self as I discuss such personal topics so close to my heart and the core of who I am. It’s one thing to have only my written words about my NVLD/dyscalculia/dysgraphia experience torn apart by other neurodivergent people (if that were to one day happen), but I couldn’t put my entire self under that microscope.

I also found it confusing to figure out what conversations I was welcome to participated in online as an NVLD-er. Sometimes discussions use the term neurodivergent (which is a word that refers to various diagnosis/neurotypes, basically it is referring to people who minds are different from the norm, those who are less common) but what they meant was autistic. Some people in these conversations were using neurodivergent as a non-clinical term for autism and meant it to mean the very specific (although still very diverse) experience of being autistic. I would quickly discover when I entered into those conversations I was not supposed to participate, that sometimes those conversations were only for autistic voices.

I finally decided to stop following some pages that I did not feel comfortable in, and stopped interacting in comments on all pages most of the time.

And the hardest part of trying to find a space in the neurodiversity movement is ending up in pro-neurodiversity spaces where you think you feel safe to only discover you are not the right kind of neurodivergent, or don’t identify as the right kind of neurodivergent. There are people in the community who don’t believe NVLD is a thing that exists, that when it is diagnosed it is really something else. To me, that is more invalidating than being dismissed by neurotypical people. There can be overlaps with both ADHD and autism, at least when looking in from the outside (I personally feel unless the person also has ADHD and/or autism the reasons are different, just like some of the overlapping reasons are different for experiences for autistic people and ADHD people. To me when you are supporting someone effectively you need to understand the reasons and not expect it to all be the same across diagnoses/ neurotypes. One of the most damaging things I experienced growing up was being treated like someone who seemed to have the same challenge as me, but it was because of a different reason.)

For so much of my life I felt different from everyone. Different from the kids who did not have diagnoses and would never need special education services, and different from the other kids who did. I didn’t seem to fit in anywhere and those who supported my disability–from special education teachers as a child to employment support professional as an adult when I learned my learning disability had an effect on learning jobs– also felt confused by my ability profile. (“You are right, I have never worked with anyone before with your brilliance and challenges” is a sentence emailed back to me from a vocational rehabilitation counselor that will live on in my mind forever). I felt very alone in my experience as a kid and later as a adult. The books I ate up by autistic, ADHD, and dyslexic people helped, reading about their experiences as people finding their way in this world helped, but the fact that their specific challenges were different left me at a loss for ideas regarding how to create the life I wanted for myself within my disability.

And then I was diagnosed with NVLD.

Finally it made sense. A learning disability of the nonverbal skills. Motor skills, visuospatial skills, noticing and remembering visual detail, all of the nonverbal skill challenges were there and, really, it told the full story along with the dysgraphia and dyscalculia diagnoses I already had. It all finally made sense. How I had always been good with my words and had a high vocabulary, fell in love with reading and writing as soon as I finally learned to read and write at age 11. The fact that I find listening to people talk (and talking) so interesting, or that I get bored and zone out during fight scenes in movies because talking is so much more mentally stimulating to me over anything visual. The fact that I sucked at Tetris, hated art class and P.E almost as much as math, had the weirdest organizational style (organized piles) because I couldn’t understand how things fit together in space and just couldn’t visualize how to put things together. The whole idea that we don’t “look and learn” but learn easily when specifically taught in words, it was just me all over. The challenges I had learning to ride a bike, learning to drive and even managing my hair, for the first time I was hearing stores from LD people that matched mine. The idea of a nonverbal learning disability just made so much sense, and it meant I wasn’t the only one. It meant I was real, I existed. I wasn’t making my challenges up to myself or being a wimp. When other neurodivergent people tell me I must have either ADHD or be autistic instead because my diagnoses isn’t real it invalidates my experience.

Maybe I still am rare. Maybe most people with NVLD are also autistic and/or ADHD. I’ve read comments where people say they don’t really need NVLD to be recognized because they get all their needs met with their other diagnoses. But I do need it recognized, because my needs are not met by these other diagnoses that I don’t meet diagnostic criteria for them anyway. I need medical care, mental health care, and HR or managers at work to be aware that I think in words, that I may need to manage my life in different ways from not only the average more common person but also other more common types of neurodivergent people people as well.

Being neurodivergent is not one thing. It means being different than the more common. We can have completely opposite ability profiles from each other. But that doesn’t mean that we cannot create a community and work together for the good of all of us. Being different than common is actually a big common denominator to share. I feel kinship to other different thinkers even when they are opposite of me. In fact, one of the social media disability advocates I often identify with most is actually not neurodivergent (that I am aware of) at all. She is blind.

YouTuber/Tiktoker Molly Burke will often discuss things in a way that I can truly identify with. During one video a while back, when she was attempting to try a meal kit as a blind girl she got a little teary and shared cooking is something that makes her feel more disabled. Despite my cooking challenges being for different disability reasons, tears were welling up in my eyes as I watched that moment. I had never really heard another person express that before. I feel like my disability is punching me in the face in a way that I do not feel every day when I tried to learn to cook. I know many people look down on people that don’t cook and will never understand my feelings about it. But Molly Burke gets it.

It is disappointing to discover that some neurodivergent spaces are not welcoming to someone because they are the wrong kind of neurodivergent. Somehow it seems worse to not fit into spaces you feel you have the most in common with. I think Yukon Cornelius from Rudolph the Red Nosed Reindeer said it best: “Even among misfits you’re misfits.” Even among neurodivergent communities some neurodivergent people, like some NVLD-ers, might still be outsiders. But that doesn’t mean we don’t have a space in the neurodiversity moment. A driving force in my life is the quote “be the change you wish to see in the world,” so if I will create spaces that include anyone neurodivergent person who feels they identify with it and need the community.

If This NVLD Life resonates with YOU you are welcome here.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing

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Getting in the DSM

I know the DSM isn’t prefect but being in would be a strong step for NVLD awareness and acceptance.

“I believe in neuroplasticity. I’m an optimist.”

It was the first appointment with a news doctor that I saw for a couple appointments. I am trying to be a better self advocate for myself by embracing my NVLD in not just the way I manage my home life but also in how I stand up for myself in the world. I was prepared for this appointment. I had a health scare a few years ago that in the end turned out to be nothing more than an ocular migraine. But it took about three months before I got that diagnosis and through that time I didn’t feel listened to and I didn’t feel I was provided with the knowledge to be an active voice of my own health journey. I wanted to start fresh with a new doctor, and I was going to be more assertive and proactive this time around.

I had just explained my experience with NVLD to my new doctor and explained how it fit in my health. That statement felt like she may not understand what I was trying to explain. I was lucky enough to have parents, a school, and opportunities for resources to support my motor skill challenges and academic needs all through my education. On top of that I have always had a very strong drive to succeed and when I focused that on my areas of skill deficit you better believe I refused to accept defeat. As I have mentioned in this blog before, I am not going to be able to make NVLD challenges go away and I don’t think trying to is a healthy use of my time and energy at this stage in my life. If I spent that time and energy on trying to get my challenges to go away I will not have time and energy left over to spend on things that bring me joy or achieve things I am passionate about achieving. I feel the key to a successful life for me at this stage in my life is learning how to live with my diagnosis in mind and work with it.

I felt like she didn’t really see my NVLD as a real thing. And I am not sure if she actually knew it was a thing and, if so, believed in it. Many professionals in psychological and educational fields don’t know what it is and, if they do, don’t believe it is a real thing. They will say it’s really just another neurodvelopment condition. And many neurodivergent people do have more than one diagnosable condition. Many NVLD-ers are also autistic, ADHD, dyslexic, etc. But the others never really seemed to fit for me. I read books, listen to talks, sad in the resource room as a child, and follow autistic and ADHD advocates and on a specific and direct level I often don’t identify with their experiences, or at the very least the experiences they present as effecting their daily life the most.

But when I got the NVLD diagnosis that changed. I found YouTube videos talking about challenges putting your hair up, read accounts of people who had trouble learning to drive because of spatial awareness challenges. People who use their GPS in their car to get to a newer location like their office, or a friends house longer then others do, or more often then people they know, and maybe also found themselves taking a walking to their classes from the same route the first few months of college because if they tried a different route they may get lost. Stories about trouble working with your hands, or making a bed neatly, or finding art class to be one of the most challenging and even upsetting parts of the day. People who found learning to ride a bike or tying their shoes to be the biggest successes of their young life. Other people who don’t remember visual detail. People who find it challenging to commit navigating a computer program to memory because it is a visual skill after all. And most of all, finding the most success with many things in life if they can find a way to process it in words.

NVLD was the first thing that ever made sense to me. And best of all, it made me feel less alone.

But there was still one problem.

NVLD is not in the DSM.

Sometimes I wonder if I would have qualified for special education services as a child or for vocational rehabilitations in my 20s if I would have had the NVLD diagnosis first? I almost wonder if the reason I was never given a name growing up, even though it was pretty clear my “specific learning disabilities” were actually all nonverbal skills, had anything to do with keeping me eligible for services. I don’t have major challenges that would classify as disability outside of symptoms/challenges/choose-your-preferred-terminology of NVLD. But my NVLD challenges are definitely a disability in in my life.

If NVLD was in the DSM there would be more studies on it. Schools could get more funding to meet NVLD kids needs with DSM diagnosed students. There would be more doctors who understand it improving our care, there would be more mental health professionals who know about it. Perhaps, thanks to an increase in HR DEI (diversity, equity and inclusion) work place programs including neurodiversity, perhaps one day someone can go to HR and say they have NVLD and a verbally- based training plan can be established that will meet the NVLD-er where they are and result in getting up to speed on the job more efficiently and successfully. Mental health treatment can be centered around what we truly need. And maybe, one day, I can explained NVLD to my next new doctor and she/ they will know what that means without implying I need to have a more positive attitude and it will all go away.

It is true that we have a ways to go regarding neurodivegent affirmative medical care, education, workplaces, and mental health treatment for diagnosable conditions that are already in the DSM. It is true what I described is not happening nearly enough for people whose diagnosis are in the DSM. But there are many autism and ADHD social media advocates that are getting the word out and people are entering these professional fields, slowly but steadily, who are listening to these voices. As NVLD continues to be left of the DSM it is hard to get our words out as much as these other advocates are able to. It continues to be hard to establish as much of an NVLD community as other diagnoses/ neurotypes have the opportunity to obtain.

For this reason I am so proud to be a Project Social Ambassador for The NVLD Project. I am happy to do what I can to get NVLD in the DSM alongside our neuro-cousins and have validation that we are just as real and valid as any other neorotype. And together we can create a better world for us all.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.

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The Spikey and Wonderful world of This NVLD Life

This has nothing to do with the post, I just find this funny.

It was getting close to 10:30am. I had set up all my skulls in the prep room. It was time to head downstairs and make my announcement.

What? Is this not a common sentence for a late morning task at your job? I was what we called an explainer at a science museum. The aspects of my role that I enjoyed and excelled at the most was leading labs and presentations, and I was just about to do one of my favorites, and animal skull presentation where the museum guest would learn about local animals and try to guess what animal they were looking at based on the animals skulls.

This was an aspect of my job where I excelled, and I was even featured on my states local NPR affiliate for this job, and featuring the skull lab. I find it easy and fun to speak in front of groups. It is natural for me to be engaging and interesting and I love educating. Science was a favorite subject of mine growing up, and much of that was from going to this very same museum I was working at as a child.

It’s important to talk about the challenges that come with something like NVLD. Doing so supports people with the same experiences, and educates people outside of the experience which allows for create more accommodating spaces and opportunities in this world for us. But another side of the NVLD story specifically and the neurodivergent experience in general is the fact that our different brains come with strengths BECAUSE we have/are our specific neurotype and the specific way our individual neurotype comes into play in our lives. Sometimes I’ll hear people talk about their NVLD, for example, as just the disability part of themselves. I honestly feel my NVLD includes my talents and that both are NVLD. All are me.

I feel strongly that I was good at leading labs and activities at the science museum because of a talent from my NVLD brain. I am good with expressing ideas and thoughts in words. I have always been very good with empathy and understanding and connecting with others (it was the highest strength–very superior– on my 8th grade testing), and this allowed me to naturally connect with the energy of the room and the people I was interacting with during the presentation. Even though other parts of that job– being a fix-it person for small exhibit breaks and walking up to museum goers who weren’t expecting me to jump in with them to increase engagement– didn’t come naturally and were not places I was strong in, I excelled in teaching those lessons, leading those labs, or doing educational talks around the bee hire or leaf cutter ant farm.

When I was in high school in a chat with my special education teacher (for context, I was in high school between 1997 and 2001) she told me a learning disability was when someone had a much wider gap between their strengths and weaknesses than the average person. And, boy, did I have that between my verbal and “performance” (nonverbal) abilities on my testing. Within the last year I have heard a term for this within the neurodiversity community: spikey profile. I had never heard that before. Spikey.

The term makes me think of a stegosaurus or ankylosaurus, but it also feels good to hear my experience in this world having a term. Family members used to joke that my experience in this world was an angsty one because I had to balance those talents and short comings every day of my life and sometimes it did effect me emotionally. Since I very young age I wanted to grow up to accomplish things, and I was so interested in just everything that makes this world tick. How things are made, science, psychology, cultures, art and creativity, the experiences of people whose lives were different than my own, I was so interested in all of it, and hated that my deficits in fine motor skills, visuospatial challenges and even my handwriting and spelling and grammar errors could hold me back from all these many passions I wanted to pursue when I grew up.

My NVLD brain made me great at giving those presentation at the science museum. It made me wonderful at capturing my subjects in my feature stories when I was a newspaper reporter. I have an ability to understand where others are coming from and meet them where they are. I can do this even when I cannot agree with them. It allowed me to tell those stories in writing in a way that captured the readers attentions. I have been taken aside by some of my most challenging journalism and creative writing teachers and told I am a very talented writer (another reason why it is sad for me that one of my challenges is creating clean copy on my own. That simple deficits of spelling and grammar mistakes and not being able to catch them on my own without stepping aside from my work has held me back in my strongest area of talent in so many areas in my life). My talents allowed me to be able to hear my clients when I was a supported employment specialist in community mental health and assist people in pursuing as close to their dream jobs as possible.

Reading perspectives in the neurodiversity community I have heard some autistic voices share the thought that those strong areas come from a hyper focus. The idea being the strong talents come from putting so much focus on certain areas and honing those skills and abilities. I think this perspective can be the reason for some, maybe even many. My personal theory for myself is on the other end of the chicken and the egg paradigm. I fully believe, and have believed since I was a child, that I simply was born with a brain that was going to have areas of talent and areas of weakness at a level of disability. I don’t think my skills are the result of any hyper focus honing those specific skills. I have had so many interests throughout my life. If it was hyper focus I can guarantee you I would be a singer/songwriter/guitarist right now, speaking multiple languages and, yes, writing clean copy the first time.

Sure, I have been able to hone some of my talents through classes and reading. Of course practice allows skill to be even stronger than base level, and due to the luck of growing up in a town with good education for a child like myself, I have worked up to what I believe is my edge in my areas of deficit, but I think the spikey profile between my verbal and nonverbal areas of struggle were always going to exist. I was quoting Lady Gaga, declaring myself Born This Way, long before she penned those words (oddly enough, that song came out the same month and year of my NVLD diagnosis).

Being an ambitious spikey profile girl for nearly 40 years is emotionally taxing. I once had a vocational rehabilitation counselor tell me I was a challenging case because he had never worked with someone with my “brilliance and challenges,” my 8th grade testing documents talked about how my nonverbal challenges were not so much significant disables on their own, but, the 8th grade documents explained, the disability came from how much my challenges get in the way of using my strengths to their highest potential. I was considered disabled enough for services because of my spikey profile.

***Important to note, only a few years later in high school when I was tested again (testing is done every three years when you are receiving services for a learning disability, or at least that was how it worked in the years I was in school) my teacher chose to compare my disabilities to an “average peer” instead of comparing them to my own areas of talent. This perspective changed the outcome of the testing. The conclusion came up that my areas of disability were not significantly in need of services or even as a significant disability. This is one of the stressors of being someone disabled by something neurodivergent. Our level of need for supports and services can be defined by how the professional in a leadership position of our care perceives our needs. And as you can see, that is subjective. My actual testing showed the same strengths and weaknesses in 8th grade and high school. One person recommended I keep having services and supports due to a disability created by the gap between my strengths and weaknesses, Another person saw the same gap and felt, in comparison to “an average peer,” my weaknesses were not weak enough and therefore I did not need services. If there is anything in this world I wish I could find a way to improve it is that I wish every professional would see their students and clients the way my 8th grade testing professional saw me. I don’t know what my life would be like if she hadn’t have seen my disability that way. ***

Part of why I am able to love myself as an NVLD-er, to see it as an identity that I am, not a disability that I have, is because I feel those verbal and interpersonal awareness skills are part of my personal NVLD. I cannot have one without the other. I walk though this world with a spikey profile and although I would have faced difficulties as someone with unique “brilliance and challenges” I still feel so happy to be exactly as I am.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing

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Openly Neurodivergent

“Don’t tell them the diagnosis. They’ll look it up, and it’s so bad.”

This sentence was uttered to me by a therapist/life coach I was referred to by the neuropsychologist who diagnosed me.

When I went in for diagnosis, paid for by my state’s vocational rehabilitation agency when I was long time unemployed to assist in figuring out what jobs I could be successful in, I asked to be referred to a therapist or coach that specialized in whatever diagnosis I would come out with. I had worked so hard in my life to be open about having a learning disability. I wrote my college acceptance essay on it, illustrating how I learned to downhill ski as a tangible example. I wrote a column in my college newspaper that ended with a statement about there being no one size fits all in education. I wanted to be open about it. I personally have never identified with those who say ” I don’t tell people about my neurodivergent diagnosis. It’s none of their business.” It’s who I am. I’d rather have people develop opinions of me, good or bad, based on the truth than inaccurate assumptions.

Then I am referred to a respected professional and my idea to be honest with my new employer to increase my chances of learning the job successfully and at a speed the employer will be ok with was implied to be a bad choice, something to hide. Those words would hold me back in some way or another for over 10 years.

It’s. So. Bad.

Bad to other people, is what she meant. Something I needed to keep private as not to be judged or assumed less than. She also kept telling me that I had NVLD very, very mildly. All she meant is she could not notice the social side of the diagnosis interacting with me. I feel I do have subtle aspects of the social side of NVLD that has effected some aspects of my life, mostly when I was a child and teenager, but the social side of NVLD is not a major way NVLD manifest’s as a disability in my life. But other parts of the NVLD profile do.

If people knew this thing about me, she felt, they wouldn’t want to hire me, or keep me employed. That was scary. I had to keep a secret about myself that I was not ashamed of because being open could stop me from being able to support myself as a productive self sufficient adult? Even though being honest and starting a training plan could be the difference between having my talents shine, telling the truth could take away opportunities before I had the chance.

To be honest, as I mentioned here before, I didn’t really want people looking it up back in 2010 when I was finally diagnosed. A lot of the things I found when I researched it didn’t focus on the things that were a disability in my life. It didn’t talk about challenges with fine motor skills, visual memory, or committing multi step processes, such a major part of being employed, to memory. But I wanted people to listen to me, and to know it wasn’t something I made up. It was a real. It was a diagnosis. Real doctors. Real disabilities that you couldn’t simply make go away with a positive attitude. Also real talents that I had BECAUSE of my verbal mind.

For me it is as real as any other medical diagnosis, whether considered mental illness or physical condition. And absolutely nothing to be ashamed of. I have less skill in visual memory and noticing visual details, spatial awareness, fine motor skills, and committing step by step processes to memory (especially if the big picture and the why for the task was not explained to me first) than the average person. You may be more bothered by those facts than me. I think I am different not less as a full human with many talents. I now had words for things I had always struggled with, like Visuospatial abilities, and yet when I talked about these areas with self acceptance some would say I was reading to much into my diagnosis, perhaps in their minds, claiming I had disabilities that I read in my documents that I didn’t really have.

But the thing is, I felt like the only one that existed on this earth that was like me. I was so very different, almost opposite, than the other kids with learnings disabilities I knew. While they were excelling working with their hands, doing trades or showing strong talents in visual arts I could not do those things at all. I loved ideas, human emotions anything that had to do with people, discussions, words, words, words. Spoken. Written. Research, writing, it was all so interesting to me. There had to be other people out there who were more like me. Having a diagnosis meant I wasn’t alone. Having a diagnosis meant I wasn’t making a big deal about things that everyone else found just as challenging, I literally had more trouble with them.

And I had the opportunity to be the change I wanted to see in the world. As a child I wished I knew of anyone like me. I could write and do public speaking some day related to learning disabilities. I could be the reason another NVLD kid, or otherwise neurodivergent kid, feels like they are smart, feel like they can find their own creative way to succeed in their goals, even if it is not the normal way. Maybe if I am open, as someone who appears to be successful, likable, and other things it will allow more people to believe the different thinkers can be those things. Less people would feel the need to keep their neurodivergence private if more of us are out and have found rewarding, happy paths.

I have spent far too much time stressing over the line of being openly neurodivergent, worried someone I may some day work for will find out about my NVLD, while also trying to be a voice for it whenever I can. I am well aware writing a social media post about my experiences on my friends only pages doesn’t mean it won’t get in front of someone who will one day have a position of power in a future hiring process in my life, but I lived on that edge, wishing it was never something I was told I needed to worry about.

Because openly neurodivergent is beautiful.

Being neurodivergent in my specific way, with my specific diagnosis of NVLD, and my specific profile within that diagnosis has lead me to exactly where I am now.

Which is a wonderful place.

Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.

Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing

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