One time someone I know who is passionate about homeschooling posted a meme that talked about never making a child learn any specific thing, always letting children come to deciding to learn all things on their own as they choose it. If I remember correctly it was sharing this as a method for all children. The idea being that a child will eventually come to choose to learn everything they will need to learn by motivation in some way or another. I found myself making a counter argument that I was surprised I made:
I told her I was so close to agreeing with her, but it was the lack of striking a balance that I didn’t feel right about. I felt this idea may be good for many children who do not have any specific skill challenges but that it could be harmful for some with a learning disability.
My reaction surprised me. I feel one of the school problems for children with learning disabilities, myself included, was too much time spent on weaknesses and not enough developing strengths. Each of us, neurrodivergent or not, is going to achieve by focusing on on talents. A Neurodivergent person will often develop self accommodations for weaknesses. Our mental health is going to be better, and we are going get more out of our education if we create balance between challenging our weaknesses and challenging our strengths. And balance in our life.
I couldn’t agree fully with the meme that all children will learn everything they need to by choice. I don’t feel this method would be best for all children, including those with dyslexia, dyscalculia, NVLD, and other various learning disabilities (maybe some, but not all). I think we do need some guidance in our education to work on improving skills that are challenging, and I do think many of us would not gravitate towards the skills in our area of challenge on our own.
I loved stories, and really, really wanted to learn how to read. Words were already the way I understood the world. The actual decoding of words to read and remembering the words I had just decoded so I could comprehend what I read was a challenge for me until around age 11, but it was something I wanted so much that I put in the effort on my own. Still, I will always remember an NVLD therapist I saw in my late 20s telling me NVLD-ers who did not learn to read early would have a reading delay then became a strong reader at 11 or 12, so maybe it was going to happen anyway). But math was a different story. So was handwriting. I would never have gravitated enough on my own to learning mathematics or to improve my handwriting enough to be at least legible if I write slow enough. Trying to learn math and practicing handwriting was exhausting, depressing, and on top of all of it, boring. Nothing about either tickles my interest at all. There would be nothing to motivate me, I’d just avoid math until it became a problem.
Someone on the thread mentioned that I would eventually have been motivated by something I wanted to learn or that I wanted to do that I would have learned these challenging skills enough to do what I wanted. The thing is I don’t think I would. By the time I would realize Not having those skills was a barrier I would be an adult and catching up would be too overwhelming. Having so many skill gaps as an adult when the stakes are higher would have been not only overwhelming but even debilitating to have not worked on those skills to get at a level that I could easier manage. I also think learning how to manage challenging things that you would have never chosen yourself, with the guidance and support of adults, is beneficial. In all honestly, I don’t know if I would have fully understood how math fits in to other things I wanted in life until I was an adult. Maybe, without guidance, I would even know what questions to ask to learn them later in life.
I understand this opinion is not universal. Someone else might believe in this style of homeschooling because they are neurodivergent just as I shy away from the idea of never directing learning, or requiring the learning of something because I am. My point on the thread was I didn’t think the education style was for everyone, as the meme implied. As adults striking a balance between pushing up against things that challenge you as a neurodivergent person and working around it are very personal choices that no one but the neurodivergent person can decide.
Setting up a child for the best balance between reaching their highest level of skill in certain specific areas that they struggle and accepting that the child has reached their edge today, and maybe the’ve reached their edge for that skill going forward, is always going to be a work in progress. There isn’t a universal answer of what is the best balance for everyone.
Math, reading (decoding and/or comprehension), spelling, handwriting, grammar recall, spatial ability, fine motor skills, retaining visual or verbal information, whatever the learning disability challenges is life as a human with these neurotypes means striking a balance between improving these skills as much as possible and focusing on developing strengths. I have made the choice to stop trying to improve my basic skills deficits since my early 30s. I worked very, VERY hard on making all of mine stop being deficits for a very long time. I feel it’s time to accept that I’ve reached my edge with them and focus on compensating for them and, most of all, focusing on my talents. It’s not a perspective many people… neurtypical people?… understand, but it has provided me a wonderful quality of life I would not have had if I remained focused on making it go away.
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
I was back from our town’s swimming and day camp program, I had taken a bath or showered, and I wanted to go out and do something, but I had to wait.
I couldn’t go out and do something until my mom had a moment to blow dry my hair. I looked for her and learned she was busy at the moment. Other people will not always available right away, but it is hard when what you need is a basic life skill.
This happened when I was in elementary school, but my need for help with my hair did not end in elementary school. And, to be completely honest so as to advocate for other NVLD-ers with long hair will feel less alone, and so those outside of this experience will be aware this is a actual challenge, I will admit I was still needing my mother to blow dry my naturally wavy-but-looks-just-messy hair, or at least put it up, all the way up through high school.
I had never heard of another person in the world, not even in the books I would seek out about people with learning disabilities (such as dyslexia), have challenges with things like managing their hair. It was not until after my NVLD diagnosis when I looked up perspectives from others with NVLD that I learned I was not alone.
Having visuospatial and fine motor challenges often left me in places of relying on others for things other people in my age group would never imagine. I felt very limited by being dependent on other people for these things. It meant I couldn’t necessarily do things when I wanted. It meant I had to sometimes put people’s lives ahead of what I wanted to do with mine (what I mean is, I had to be respectful that others could not just stop what they were doing to assist me with something I couldn’t do myself. That could be a challenging place to be in).
Now, I honestly don’t know how much of this might actually just be an independent nature that I have always possessed, but as a young adult it became very important to me to find ways to be independent.
I had long hair since 4th grade. I had one of those Dorothy Hamill bowl cuts when I was younger, but as soon as I could speak up and choose my hair cut I wanted it long. My long haired head-of-school (think principal or headmaster) in high school even declared I might just have had the second longest hair in the whole school when I was a freshmen. But when it was time to head off to college I got a very short cut so I could manage it independently. I really, really didn’t like it, and after a rough time growing it out and a hair stylist teaching me how to flat iron just before heading back to my senior year of college, I finally learned how to manage my hair on my own.
But my desire to find a way around my NVLD challenges to be as independent as I could continued throughout my life. I value agency and personal empowerment so being dependent on others was not comfortable for me.
Sometimes it means lowering my standards for things. Or maybe a better way to put it is lowering other people’s standards for certain things in my life. I have decided my hair simply is not going to look kept when I wear it down in the summer. Humidity will poof it out. In the summer my hair will be in a (as good as I can do) ponytail or (as good as I am able to do) bun all summer long. I will wear it down in the winter and less humid spring and fall days when I have time to iron it. I understand you may not think it is a good idea to flat iron your hair, but it has been the only way I have ever leaned to manage it and sometimes I do want to wear my hair down. Also, it is my hair, not yours, I am the one who has to live with it!
But what I know other people will consider as lowering my standards opens so many doors in my life to spend less spoons, emotional energy, and overall well being on things that are very challenging and not achievable for me so I can instead create a rewarding life where I am able to use my talents to contribute to the world around me and enjoy my life.
Sometimes other people want to do things for me. And, as I talked about in the last entry, Annoying, Needy, and None of my Business there are times I do want other people I am very close to and trust to do some things for me here and there. But when it comes to just things regarding daily functioning I would rather you allow me to do things my less than perfect way than step in without my asking. If you are sitting next to me while I fill out a form, please don’t ask to fill it out for me because you feel my handwriting is messy. It is readable, and I will fill out my own forms. If I bring out my calculator to figure out my tip when we are out to lunch please don’t explain the decimal trick to me or just tell me what the tip is. I am not going to learn it and retain it in in that real time environment anyway and I am comfortable with using my calculator. I would prefer to handle that moment myself. Please let me drive farther away to find a parking spot I can drive directly into, or a parallel spot that had at least one open spot behind it so I can drive in. Please don’t try to push me to try parallel parking or give me grief for it. I don’t mind being driven places to avoid some driving and parking stressors, but if I am doing it on my own let me do it my way. These are the ways I manage my NVLD and keep an independent life.
One of the largest challenges in my need for independence was getting into a relationship. I was 34 when I met my husband and I had never had a relationship last longer then a little over six months before (and the 6 month relationship was before I was 21!). I had never gotten to a point in a relationship of creating a life and a home together. My husband has a lot of strengths in my areas of weakness. When we got together I had only six months earlier moved into my first apartment by myself and without roommates. I had decided since myself and my friends were all getting older and moving on to next steps I no longer wanted the roommate life.
Roommate life is not the same as you get older. When you are younger your roommates are often close friends, almost a replacement for family in your transition to adult life phase. When you are older they can be just people who live in your house, and as more people live with partners and/ or their children, they are not even necessarily your friend. I decided I wanted to live alone unless I someday had a partner.
I really enjoyed creating my independent life, doing things my own way. I intellectually understood that a healthy romantic partnership is an interdepend relationship, but it was hard for me to come up with work-arounds and processes to create my independent life. I was afraid that if anything happened– from a break up to a loss due to a death– that I would no longer have the skills I had developed to be independent and I would crash and burn too much before I could develop them again– if I even could develop them again. I know many people roll their eyes reading what I just wrote, but I believe many disabled people with many types of needs may have these feelings. And I think it deserves a voice both for us and for those we may have in our lives outside of our lived experience.
It was an interesting and sometimes challenging transition, one that we worked on together with humor. It created inside jokes that I think will always be part of our relationship.
Independence for me might not look the same as it does for you. On the flip side, it may look like I am needlessly struggling when you can easily jump in and do for me. But please understand it is important to me to take care of myself. Please know I am not afraid to ask for help managing my visuospatial, math, and fine motor challenges if I trust you, but please know that it is up to me to choose when I want something done for me and when I need to do something independently. And please believe me if I tell you I can’t do something the way you do. Please understand you are not the first person who has tried to teach me or thought I needed emotional encouragement to do something well. I am an ambitious person by nature. If I say I can’t I am not being negative, but honest. I put a lot of time into learning acceptance of the disability side of my NVLD so I can love all parts of my NVLD self. Please believe me that it is a literal deficit, a literal disability that I can’t easily–sometimes can’t at all– change. Please know it is not low self esteem or a bad attitude. In fact I feel a great increase in self esteem when I own words like disability and deficit when it comes to my specific areas of challenge. I know my perspective might be confusing for you. I am still smart, I am still talented, and I am still everything you thought I was before you noticed my fine motor, visuospatial, and math challenges. Please let me choose what I do independently.
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.
A statement I like is what other people think of me is none of my business.
I don’t have any photos with my new kayak, so here is an old one from 10 years ago!
At the beginning of summer I bought a kayak.
I had never had my own myself before, just used the ones we got when I was a teenager. It was such an exciting feeling to have my very own kayak. I didn’t get out in the water with it until Labor day, but by the weekend after Labor Day I had gone three times. And that part was great.
What wasn’t great was getting it on and off the car.
Subconsciously I didn’t want to think about that part. In the back of my mind, I think I wanted my kayak partner to handle it while I watched from the sidelines. Things like this are painful topics for me. My personality doesn’t like to be what people call helpless. I don’t like to let other people take care of me, or to wait for people to do things for me, and most of all I don’t like the way it feels when people see me not being able to do things.
People get annoyed, they judge. They see you as lazy, or being dependent on others on purpose to be treated in a special way. Even typing that word: HELPLESS brings up painful memories of people referring to my very real spatial, visual, and fine motor skill challenges as “learned helplessness.” Learned helplessness is when you experience failure or trauma a number of times and lose your ability to solve it, you basically give up.
Now, I have come up against not being able to do certain things using those three skills mentioned and people not understanding they could be challenging for a person, or at the very least, seeing me as a decently intelligent person because of my verbal skills, and so not believing I could have challenges with these skills. But the thing is, my challenges with spatial awareness fine motor skills and visual skills are all very real. Believing they aren’t, which is something I have tried to do, did not help me to have less struggles with them.
Tying up and taking down a kayak from a roof rack is an NVLD nightmare. At least for my specific NVLD. There is fine motor skills of tying up things tight enough and undoing things. There is the visual memory needed to remember what I was shown, or even what I just did, and the confusion my mind has with spatial awareness, just understanding how things go together like how a knot is created is lost on me for a very long time. Learning to tie our shoes as NVLD-ers is often a challenge, imagine any other knot. Basically every part of doing it is a challenge on my NVLD.
I would need a lot of detailed verbal instructions every time until I get it, and I can’t rely on people being able to do that for me in most cases that these skills come up. I have learned that is a lot to ask of people in the real world moments where I would need this assistance. Often, it almost feels best to get out of the way and deal with people mad at me for being lazy or a princess.
But I am even more afraid of being thought of as those things, so I slow down the works by trying and failing. I hate feeling their frustration. But at least I tried, right? On the rare occasion I do accomplish one of these skills, with great exhaustion to abilities, people around me will smile and say see, I knew you were just being lazy/a princess, or sometimes something sort of nicer like “see, I knew you could do it” and walk off feeling like they know my abilities more then I do. These moments are a very challenging and embarrassing experience for me. I had almost forgotten what these feelings are like. I haven’t had a situation in a while where I have had to come up against these challenges.
The kayak moment didn’t last long. We were soon in the water, but the feelings and memories it brought up from my life stuck with me further, the memories of similar moments reminding me that despite all my accomplishments, I am still disabled.
I can feel people being annoyed with me in these moments. I desperately want to just say I can’t do these things. To have the strength, conviction, and self esteem in my own disability to be brave enough to admit and be clear when I cannot do something. I know that may sound odd to you. The self esteem to admit defeat? If you know me, and you knew me over 10 years ago you may wonder how the hard worker you knew, who never gave up, went.
When I got diagnosed I learned to accept my disability and my limitations and see it as something to work around instead of punch through. I know there are things that the vast majority of people can do without a second thought, I understand I have to live in a world where others cannot understand that someone can have a significantly varied ability profile so when they see me struggling it cannot possibly be that I have a disability in that area, one I was born with and have no control over making go away. It must be learned helplessness, or a bad attitude, laziness, or I must like making people do for me.
So I try to be strong in my convictions that there are things I cannot do, but when put in a situation when people are counting on me, and not able to stay right with me and give me detailed verbal instructions, or simply not expect me to do something, I try, fail, and annoy people. And I keep trying and not succeeding until someone gets tired of waiting on me and does it themselves.
Always waiting for someone else to get annoyed.
This process not only wastes time, but also hurts me. It zaps my small reserve of spatial, visual, and fine motor abilities, and can even zap my spoons for my talents. But to me it feels worse to not try, and fail at something because of how it appears to others, how others will think I am being helpless. How, in the past, people have considered it giving up when I am honest with myself and others regarding my challenges. And how very embarrassing it can be to deal with someone believing I am lazy, wimpy, or a princess.
And it can be sad and limit me. Once I signed up to volunteer in event set up a local TEDx in my area. It was a dream come true to be able to attend the event and at the time the only way I could make that happen. It was an amazing two days. But after the experience of the day, having to do certain tasks that were hard for me to do without someone available to provide me verbal instruction, I sadly did not sign up the next year to do event day set up, and there were no other options to volunteer.
I cannot change peoples minds. Well, my goal in writing this blog, having my This NVLD Life facebook page, being a Project Social Ambassador for the NVLD Project and any other advocacy work I am able to find myself doing, I hope to change people’s mind a bit about neurodiversity, to be a voice in getting the word out about the unique challenges of NVLD, and the fact that many neurodivergent people exist all over the place with other unique challenges you may never have realized.
But until more people understand and believe my disability I will find myself in moments like this again. In my daily life, when I find myself stuck in moments with people where I cannot choose not to put myself in a situation, I hope to some day be strong enough to tell the truth, explain I will needed someone to stand by me giving me verbal instructions, that my motor skills still might result in not very strong knots, or evenly sliced brownies even with coaching. And most of all, if that is a problem I might not be the person to do the task.
I may still feel their annoyance of me if I speak up rather then try and fail, but what other people think of me is none of my business and I know that I have value even if I have visual, spatial, and fine motor disabilities. I am intelligent, capable, and worthwhile to take up space on this earth 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
My attempt at being sultry, and authentically NVLD at a lake.
Between the age of 5 and 28, between the years of 1987 or 1988 to early 2010 I knew I was what we now refer to as neurodivergent. I knew I had a learning disorder. But I wanted a name. I wanted to know what I had.
I knew my handwriting was called dysgraphia, my math challenges were called dyscalculia, but that wasn’t enough for me. Those were such small pieces of the overall story of my unique brain. I felt like I couldn’t be the only person who had my unique combination of strengths and weaknesses. I felt like there had to be a name for what I had, what I was. Finding that name for my diagnosis was very important to me.
A lot of people will tell me labels don’t matter. Some say I shouldn’t categorize myself, I am just a person. More recently, I see a perspective that diagnosis makes our various types of minds pathologized and we should just see ourselves as neurodivegent.
But that is not right for me.
I like belonging to something. I’m proud to be a millennial; (I’m was born in 1982 and was aware I was a millennial straight up through my 20s. I even sat on a panel in a conference back in my 20s representing the millennial generation with one other person who was all of a year younger then me, in the future of nonprofit leadership. Not sure why so many people my age and a few years younger seem to think we are not millennial). I’m proud to be a New Englander, and whatever else I identify with. I get to choose the labels that empower me, and the fact that others feel labels limit them… well, that’s what is right for them. I don’t have to be what makes other people comfortable and others don’t need to be what makes me comfortable.
Plus, I do think my neurodivergence is a medical condition. I do feel both those things exist at the same time, and I feel empowered by that belief.
Being a nueordivergent person is very nuanced. It is an identity, it is something diagnosable. It can be something you have or something you are. You are allowed to exist on any point on the social model and medical model of disability that you are comfortable with, and where you land between those two models is allowed to change from day to day. It is extremely personal and you can choose what is the most comfortable and empowered in your experience. No other neurotypical nor nuerodivergent person has the right to tell you how you identify and what your relationship is to your unique type of mind.
And since, in many ways, I do see my neurodivergence as a medical condition I want a name for it the same way any life long medical condition would have a name. The name allow for treatment, it makes it tangible, it provides consideration and understanding of what is going on. I think it can be a medical condition and just a difference from typical at the same time. I was an identify first girl” with my NVLD even before I had that name, and even before I knew “identify first language” was a thing that existed.
I have also thought of dyscalculia and dysgraphia as things I have, not who I am. I am a “person first girl” with those two diagnosis and I realize I have been all along.
There is a lot of duality in my experience with my neurodivergence. I like it that way. I feels right, like I am respecting all I am.
When I got the NVLD diagnosis at 28 I considered it a gift. A name meant other human beings in the world had trouble with visual, spatial, and fine motor skills and had strengths in verbal skills and social-emotional skills. Like people with ADHD, dyslexia, and autistic people were able to have a name for what made their brains different, that although they were different from the majority they got to be “normal” (although… normal is not an actual thing) within their own diagnosis.
I finally got to be, too.
This feeling has made it hard confident neurodivergent people online tell me NVLD isn’t “real,” that people diagnosed with it should really be diagnosed with ADHD or autism, or both, even when I don’t fit into either, and neither really meets me where I am and the way my neurodivergence effects my life. I know many NVLD-ers do also have other diagnosis/ more than one neurotype. I know some have even said they don’t share their NVLD diagnosis because they feel they get all they need from the awareness of autism or ADHD.
I don’t feel that way. Not for myself and my experience in the world.
The majority of what I hear autistic and ADHD people both express they need are often not what I need. The challenges that look similar on the surface do not have the same reasons, and those reason need different accommodations and different considerations.
The things that I need consideration for in my daily life are very much nonverbal skills. My talents are very much verbal (and also understanding other people). The NVLD label explains what I need. Well, it would if people knew what it was, even a little bit. Without NVLD being in the DSM it is hard to point to proof that it is something real.
I know I say this a lot in this blog and the This NVLD Life facebook page, but it is really important to me in my advocacy to express neurodivergence is not one thing.
Neurodivegence also is not a non-medical term for autism only, as I sometimes see it used online. As we create a world that has more space for quality of life, more space for job and career success, and more accessibility in all aspects of life for neurodivegent (and also other disabled) people it is important to know that people come along with a variety of strengths and weaknesses, and those skills and weaknesses can be opposite skills and weaknesses from another neurodivergent person. From my perspective, having multiple diagnosis allows for those different needs to be met.
It allows us to be aware that what may accommodate one neurodivergent person can make things more challenging for the next neurodivergent person. Just as finding a physical medical diagnosis determines how we treat that physical medical condition having different diagnoses allows for differing needs to be met.
An example of this is dysgraphia (which itself is no longer in the DSM. Lucky me, another diagnosis not in the DSM, haha.) and written expression disorder, which I shared an Understood post about on the This NVLD Life facebook page on 8/1/2021. With written expression disorder the person does not have challenges with the mechanics of writing but they have trouble expressing their thoughts in writing, the post explains. As someone with dysgraphia. I have trouble with things such as handwriting, and some inconsistency with spelling and grammar. Despite my challenges with the mechanics of writing I find it very easy to express my thoughts in writing. In fact, it has been my passion to write since I became literate. My problems with writing really only come from the fact that other people don’t like messy handwriting or spelling and grammar issues. I see right through those things, and really I’m not affected by them.
Both myself and someone with written expression disorder have writing disabilities, but can you see how very significant our differences are? Do you think I would need the same accommodations and considerations for my writing disability as someone with written expression disorder?
I know many don’t agree with my feelings about identifying as both neurodivergent and a something medically diagnosed.
And I support that.
I want every neurodivergent person to have what they need and to see their neurodivergence for themselves in their most self accepting and empowered perspective. I want to create a world where it is possible for people to be accepted for however they are most empowered. I want that space for neurodivergent people who do not have the opportunity to obtain diagnosis for access reasons (including financial and geographic) as well as those who do not want a medical diagnosis for any sort of personal reasons but still identify as neurodivergent.
I do want space for those of us who are empowered by diagnosis to have the opportunity to obtain them, to have those labels available to describe ourselves. I still have dysgraphia, even it it has been taken out of the DSM, and I think I can be ok with that fact. I do feel having NVLD in the DSM would make a difference in my life. It would increase the chances that professionals would know what it is I struggle and shine with. It would allow more supports to be studied to assist myself and other NVLD-ers in creating lives we find meaningful with less of tears and scary moments that I have had to deal with in my almost 40 years of life on this earth.
I am proud to be a Project Social Ambassador of The NVLD Project, an organization working on getting NVLD into the DSM. That distinction of an actual, tangible diagnosis would be a gift in my life, and I hope to one day be able to say I have NVLD and not hear back “what’s that?
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
“I think much of the world has the wrong idea of working. It’s one of the good things in life. The feeling of accomplishment is more real and satisfying than finishing a good meal- or looking at one’s accumulated wealth,” Jim Henson.
My first dream job was to be a clown.
Yes. That kind of clown. Big nose, painted face, colorful wig.
I enjoyed Grandma the Clown when the Big Apple Circus came to town, but I am not sure where I got the idea that this type of career would be the direction I wanted to take my life. But the clown dream was the first career goal that brought me joy to dream about. I didn’t have any dreams about marriage, family, a car or a home or where I would live, or anything like that. My childhood dreams about the future were always about what I was going to do, and to me what you did was what your job was. To me, that was the most exciting thing to wish for as an adult.
As I got older my career ideas changed. My next goal was to be a vet, but then I was at my pets vet appointment once and the exam room door was a bit ajar and I could see a dog in surgery. I didn’t want to operate on animals myself (did I already know I didn’t have the dexterity for surgery?). I really enjoyed science during those early years as well, and continued to until mathematics began to get involved, but never really settled on a career idea in science again. When I finally learned to read and write around 11 I began to notice that we really weren’t talking about learning disabilities in the way I felt we should, as something people were living with and managing every day rather then something only discussed in relation to school and even then were kept private. I wanted to have some part of my life involved in advancing the lives of people with learning disabilities and bringing them out in the open.
The only job I knew of that worked with learning disabilities directly was being a Special Education Teacher. I didn’t really want to spend my whole life in the school world, but I did think about that as a career for a brief time. I remember years later my special ed. teacher would occasionally say “I thought you wanted to be a special ed. teacher!” To her that idea stuck more than it did for me.
I had moments where I wanted to be a reporter like April O’Neil of the Ninja turtles (for context, I was born in 1982) and and Lois Lance of Superman, which made it even more cool that I eventually got a journalism degree and have worked as a newspaper reporter. I wanted to be a book writer for a while, starting off with writing my memoir from the perspective of a person with a learning disability as someone who was just another person but had these specifics aspects to their life. I especially felt my specific learning disability was not talked about. I honestly didn’t know anyone as a child who seemed to be like me in my combination of strengths and weaknesses.
School had it’s challenges with it’s requirement of excelling at skills like math, reading in my early elementary years, spelling, and handwriting. Even P.E and art were challenging for me. But I was so interested in everything and wanted to learn about it all. I soaked up knowledge wherever I could. I loved museums, and walking in the woods with me dad who knew a lot of facts about nature. He would teach us about moss, lichens, and trees while we hiked. For a kid who loved to learn and learned verbally I had the perfect parents. I loved anything educational and enjoyed PBS television. In my later elementary school years I would watch the news and take pride in being aware of what was going on in the world. I remember talking with my mom about how I would have been successful and interested in so many different things if not for my learning disability because I was so interested and knowledgeable and good at learning about so many different things. I felt really “smart,” especially outside of school where having all these specific skills weren’t necessary.
When I was in high school I took both a novella writing course and a playwriting course. I really enjoyed script writing and was even the runner up in my school representing us at a high school student playwriting festival. Our school also acted the plays out in addition to the festival, and it felt so good to watch my story performed by other “cool” students. I really wanted to be a scriptwriter after that experience. I had really enjoyed being involved in theater, and writing scripts combined my love of writing and acting. But of course that is probably one of the most competitive careers out there
But in high school the stakes were higher. choosing a career was a closer reality I took one of those career inventory tests and one of the things that came up on my list was dental hygienist. For whatever reason adults in my life really directed me to dental hygienist. I don’t understand exactly why that career direction was supposed to be a good one for my ability profile. On my testing my most impaired ability was fine motor skills. Dental hygiene is basically entirely fine motor skills, visual skills, spatial skills, and people skills. I only had the last skill.
I felt like I did the best in work that allowed for creativity, problem solving and idea creating. I was good at deadlines and time management. I liked project based work. I liked presenting and public speaking. None of that was part of being a dental hygienist. I remember it being mentioned that I would know what was expected of me as a dental hygienist, but I don’t really remember that I showed signs of excelling when I knew what was expected of me. I think I excelled when I didn’t need to follow a set up rules but when I was instead able to create. I tended to excel more when there was a lot of freedom to do things in my own creative ways. to this day I don’t really see why dental hygiene was thought to be a match for my strengths and weaknesses. But I still felt that adults knew me better than I knew myself at that time. If they were all supporting this direction it must be the one I needed to follow.
I resigned that I would make my living being a dental hygienist, but I wanted to go to a four year college where I could double major in writing. I figured I would still be a professional writer. Finding a way to follow my career dreams was always in there in one way or another.
Now, I have gone through my career challenges in posts on the This NVLD facebook page and in the blog post Then They Expect You to Pick a Career (10/28/2020) and Disclosure on the Job (5/12/2021). In this post I want to focus on my skills. As you can probably imagine I did not end up being a dental hygienist. In fact, I didn’t even get as far as school for it. The school connected me to a local dentist to work as a dental assistant starting the summer after my junior year. Let’s just say we were all aware my future wasn’t in the dental profession.
I did go on to major in journalism with a writing minor, just how I dreamed. I had a great time as an editorial intern at a children’s magazine during my last semester of college. I worked as a newspaper reporter, used my public speak skills to be science museum “explainer” (interpreter) and used my creative problem solving skills to be an evidence based supported employment specialist and later team leader assisting people receiving treatment at the community mental health centers I worked for. The program assists them in obtaining supports to continue success in the jobs that they chose that worked with their skills and supported their needs. I even obtained a coaching certificate during that time from a local university career development program and began a private career coaching practice for neurodivergent professionals.
When my relationship became more established I needed to change careers. In order to work in mental health at the level that I feel is doing right by my clients it needed to be the major focus of my life. I could balance that with friendships, but I could not be in my relationship the way I wanted to and work in a field that needed my full emotional self. I also wanted to have the emotional energy use my verbal skills to take part in advocacy and activism for neurodiversity into my life. I had dreamed for so long to write and speak about this topic, and I feel that using my voice is the best way for me to make the differences that I want to make in the world. To allow for this balance I now work in phone customer service and hope to have this be my first step in a new career with the company.
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.
The past year and a half allowed me to focus on settling into a new job, how I wanted to bring neurodivergent advocacy and activism into my life now that I no longer worked in supported employment in community mental health, and settle in to married life.
Taking the hustle and run around from my life allowed for some time to re-group after a year wedding planning and trying to change my career to something that would allow for more mental health balance. In the last month and a half or two month that has changed.
How does entering back into a social life feel after a year and a half significantly limiting socializing, especially in face to face settings, and in spaces where we can meet new people, after so long with my focus on work and jumping even deeper into my acceptance of my own identity as an NVLD-er specifically and a nuerodivergent person in general?
It’s been good. And interesting. And a bit triggering for my rejection sensitivity. But also really great. But also stressful.
I have never identified as an introvert (and it has bothered me in the past when some people would put that status on me). I don’t see myself as either an extrovert or an introvert. I don’t need constant human interaction. I actually really enjoy quiet time alone or doing something out in the world by myself. And sometimes I need some time alone or with only my husband balanced off with socializing, but I also keep a pretty active social life. I don’t think it is as simple as socializing drains me or replenishes me. It’s both.
I love having a lot of friends and spending time with different people. I love social events and seeing a lot of people at the same time and meeting new people. I’ve enjoyed novel situations my whole life. When I didn’t know how to make friends, or whatever was the challenge for me when I was a child and teenager, it made me miserable. I felt like I was meant to be a social person but couldn’t be. I wanted to join in on conversations around me in the high school halls so much. I wanted to be a part of what was going on, I wanted to be around people and belong.
I mentioned my rejection sensitivity has been a bit off. I have never really gotten a handle on why connecting with my peers was such a significant problem and then so quickly was not a problem for me. I know theater and talking bout socializing in the social anxiety disorder group I did senior year of high school was a real turning point in my mind, but why was the change so significant? What does it seem that since that time I have been natural at connecting with people and developing friendships? And can that terrible, lonely experience happen again? Those times here and there throughout my life when a friendship did fizzle, is that a sign it is going to happen again? That suddenly people will realize I wasn’t really all that likable to begin with?
Since I was vaccinated and started returning to a social life one of the first things I did was see people from the hardest time in my social journey. My husband and I attended my 20 year high school reunion across state.
My rejection sensitivity stems from how completely miserable I was to not have friends, and also never really understanding what changed so much about me that I have had so many friends since high school, and so many friends that I have remained in touch with throughout my life since then.
The pain in school came most of all being surrounded by people while at school and knowing feelings so alone all day. For a girl who was a reluctant loner you might think I wouldn’t really have been someone who would have wanted to go to my 20 year high school reunion. Why would I want to remise about a time that gave me significant anxiety and even started to lead to depression? Well, say what you want about social media, facebook especially, but it has been a more of a positive then a negative in my life (as I mentioned in Social Media and My NVLD Life). Having some people from high school on my feed, interacting from time to time, I got to know my classmates a better, but even more so then that they got to know me. Four years sitting together in classrooms, sometimes awkwardly sitting on the lunch table with them if I was feeling strong enough to try to connect, my classmates really didn’t have a whole lot to go on about who I was.
My social anxiety was as atypical as my brain. I felt fine acting in plays and doing presentations for my classes, but it was just socializing that I couldn’t seem to figure out how to do. I didn’t know when to talk and sometimes I would think of a good joke, or good way to connect in the conversation at the wrong time, or I just wouldn’t know how to jump in. My authentic personality is actually sort of loud. I laugh, I talk fast, I find a lot of things funny and I have a lot to say. I also really, really care about listening to people and getting to know people. I am not quiet when I am being myself unless I was listening to you. But quiet was probably the only word my classmates would have about me.
On facebook I started to feel connected to a few classmates. When discussion about, first a covid safe virtual reunion, then later the in person during 4th of July weekend started to be discussed I decided to attempt to move on from those upsetting feelings from high school in a way that feels the most comfortable for me. In writing. I had already written the blog entry Thank You for Being a Friend and a big part of that one was about high school (if you want to revisit it it is dated 11/12/2021). I shared the entry with the members of my class of 2001. It was scary, but a few classmates said the nicest things, and it even kicked off more connection with one classmate. When the in person was finally scheduled in early July I chose to make the trip on a rainy day across state with my husband.
It was such an good experience. It helped so much to have my husband there to keep my in the here and now, the Anna I am today. There were moments I felt out of place. I was surrounded by people who were old friends who I knew at that same time that they were friends with each other, but I didn’t have all the shared stories of old friends to connect on. I was there, and I remembered a lot of school with my intense biographical memory, but I was still an outsider to a degree. But..
… It didn’t fully matter. I wasn’t always sure how to just walk up to them and talk (something I don’t have as much of a challenge today as I did then, and do often, but it felt weird jumping in on old friend’s chats) but still. Most classmates at the reunion were really open to talking to me, to meeting my husband. It might be for different reasons, but I belonged that rainy day, out on the grounds of a place I liked but attended during one of the most darkest and loneliest times in my life. They say you can never go back. But I did. I changed the narrative going forward on a time that I used to be embarrassed about, the reluctant neurodivergent loner days can now be behind me. They are no longer a blight on my life. And I should get on planning that double date day with one of my old classmates!
July and the first weekend of August continued to be a busy time. I had a vacation week where I made plans to meet up with a different friend I hadn’t seen since the pandemic each day for one on one adventures, and I’ve attended a girls night, a friend and former roommate’s 6-year-old son’s birthday, a wedding shower, and a much anticipated double date night that has been waiting to happen all pandemic. I feel like I may be a little rusty in some of my internal challenges in when to talk (I do not know how noticeable it is that I still and probably always will have a weak area there). But it has felt so good to know all these friends who I hadn’t seen, or hadn’t seen much during the pandemic still wanted me around. As neurodivergent people, many of us have dealt with so much rejection it writes on the tablets of who we are.
Our brains go to that place of assuming rejection so easily. It goes there to protect us. We have all this newer data that we are likable, that we developed friendships and those people want us around. That data for me as been gathered for many more years than the other data, and even the people who were there during those high school days has seen the new information. We learned that people actually like us in our genuine form, without controlling, changing, or simmering down our personalities. But shaking it is so hard. If I had any mildly awkward moments over the past month my assumption has been that it was me, that I forgot how to socialize over this past year and a half, that I forgot how to meet new people, or that my friends who I hadn’t seen in a while are realizing I am not as cool as they once thought.
But this is my past trying to find it’s way into my future. Awkward happens. And you know what, awkward is not always me. Other people are awkward sometimes. Circumstances can make things awkward when neither persons is at fault, and awkward is not necessarily bad. It can be fun. I play off that stuff pretty well, if I do say so!
So my goal for myself, my goal for all of my neurodivergent siblings who feel their nuerodivergent experience effects their social lives, or at the very least, entering back into this world, you got this. It’s not all you. And this world needs your unique personality in it. So, if it brings you joy, go to that party, meet up with that old friend, and be proud of who you are if you choose to revisit a part of your past. Because you are amazing. I am so proud to be one of you.
We belong.
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.
Sometimes you just need to take a break from Doing a Thing.
Growing up I wanted long hair. I had one of those stylish-at-the time bowl cuts many little girls had and HATED it even than. I had grown my hair to my waist by middle school. Then college was coming up. I wouldn’t have my mom around to style my hair with a blow dryer or to help me put it up in a messy bun.
Yes, you heard that right. I was 18/19 years old, heading off to college, mature in many ways, but not able to manage my frizzy oddly wavy long hair on my own. I hate being dependent on someone (which is what I almost wrote about this week. Next time). Not going to lie, this is a bit embarrassing for me to write down where people who know me may read it. There are not many people who can identify with this challenge. This is one of those very specific neurodivergent experiences I have really only heard from other NVLD-ers. I was so jealous of girls who had silky, heavy, straight hair. I know mine held a style longer than theirs, but I would forgo that benefit to have wash and wear hair.
So I did it, despite how much I loved long hair I got a very short haircut so I could handle it myself at school. I kept it that way until I just couldn’t do it anymore. The summer before my junior year, though, I couldn’t take it anymore. I wanted longer hair again. It took a year, and an unintentional mullet, but I finally grew it out. When I got a hair cut to put a style to my grown out mop before returning for my college senior year my stylist flat ironed my hair, and I somehow remembered how she did it (although I NEVER got the hang of doing the back). To this day I flat iron my hair, and, in the summer when humidity creates an unrelenting lion’s main of body, I wear it in a ponytail or a bun. Not the best ponytails and buns, but what I am able to put together. And that is just what I do.
For me the most significant way NVLD challenges my life is Doing a Thing. I hear Doing The Thing talked about in the ADHD community a lot, however my NVLD, non-ADHD experience is a little different (which is part of why I do believe accurate and specific diagnosis is important if it is attainable. Many diagnoses look the same on the outside but the reason and what is going on internally for us can be very different. You will handle Doing The Thing differently as an ADHD person who has trouble with getting themselves to do the things they know how to do, and an NVLD person who has no trouble getting themselves to sit down, or stand up, and do the thing, but just can’t… do the thing!).
That seems really broad, doesn’t it? Doing the thing? My weak areas include visual skills, committing multiple steps processes to memory (although that is easier if I am allowed learn them verbally and only verbally), spatial skills, and, my weakest area of all, fine motor skills. Put all those things together and you can probably imagine it can be really hard to learn to do the thing. Cooking, cleaning, hair, make-up, these are all things that can be challenging for me. And don’t you dare make me parallel park. It’s also really hard to find a job where all I need to do is talk, writer, and research. Doing the thing usually finds it’s way into every job out there (and as my readers know, because of my dysgraphia not even my favorite activity of all, writing, is free from my personal neurodivergent challenges).
After my diagnosis I started taking more care of my mental health and my “spoons.” Before that I have been capable of pushing myself to being miserable, exhausted, and trading accomplishing one thing for failing at another. Even failing at things I am usually good at for the sake of pushing myself to “do the thing” I really can’t do the way others do. Once I knew that I really was dealing with same weaker areas of ability than other people, and also a bigger gap between my weak areas and my strengths than the average person. I started thinking about how to manage my life a bit differently. I was not the same as everyone else, I had a right to manage my life in ways that were different than other people.
I understand this was confusing for those around me, especially since I had a reputation of being such a hard worker who would always push myself to do something. But I would do this even when I not only thought, but KNEW I was not capable of doing the thing. I mean, I couldn’t give up, right? I had to do my best at everything even when I knew I wasn’t able to do the thing or I would be someone who gives up, and that is someone I just can’t be… right??
Some felt I wasn’t working as hard in my life anymore, and let me know that. But I knew what I was doing. No, I wasn’t going to work as hard anymore. But I was going to go about my life better. I was instead going to go about doing things a different way, and changing my expectations of myself.
As time has gone on I have given myself more space when trying something new that I do not have to do in a timely manner. I also choose what I want and need to learn how to do. I will work on trying those new things when I know I have the time and mental energy to try them. I know doing something that is heavy in fine motor, spatial, or visual skill take up more spoons anyway, but even more so when the activity is new. When you think about it, “doing a thing” is usually compromised of being aware of yourself and the thing in space, having a visual memory and/or noticing visual detail, and using your hands to complete the fine motor tasks to do the thing. Plus, committing the steps to do the thing to memory.
Doing a Thing is an NVLD nightmare, and yet it is not really something you can create a life to avoid entirely Which I would make the case for why some joke how angsty NVLD is. Wouldn’t you have a bit of angst too if what I describe was challenging for you? My mental health hinges on the fact that I don’t expect perfection from myself. When I had those standards I was miserable.
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.
On my daily walk after working all day alone from home, where I often come up with ideas for This NVLD Life.
It was this month in 2020 when I decided to take the quiet time of the pandemic to make a dream come true.
I had wanted to write about my experience as someone with a learning disability since fourth grade. I even had little journals with the working title of “The Problem with Being Me” written on the front (I have since moved very far from that original title idea.) After 23 years knowing I had a learning disorder but not having a name for most of it (the dyscalculia and dysgraphia diagnosis’s just didn’t tell the whole story) when I finally received the NVLD diagnosis in 2010 at the age of 28 I wanted to begin a blog opening up the story of my different kind of mind and educating and advocating that their are people in this world whose minds work a little different than others and we also deserve to have space to use our talents, receive services, such as medical, educational, etc,. that serves our needs, and gives us the space to live fulfilling lives.
I went back to get testing as an adult because I was trying to get back to work during the recession (see post Then They Expect You to Pick a Career from 10/28/2020 ). I needed to change careers outside of newspaper reporting for two major reasons. One, my inconsistent spelling and grammar issues. Some editors I worked with didn’t worry about this issue, some did. I couldn’t live a life where I might be fired every time my editor changes, plus in 2010 it was becoming more and more challenging and competitive to work in journalism and publishing with the transition to digital media and it was no longer a fit for me.
I was so excited with the idea of starting a blog about my new NVLD diagnosis and the experience of being what I would later come to know as leading a neurodivergent life. When I went in for testing I had asked the neurospycologist to refer me to a therapist or life coach who was experienced in whatever diagnosis I was going to come out with. I do my best with problem solving via discussion, I felt that would really help as I tried to navigate my life and my personal and professional goals. He referred me to a therapist turned life coach who had strong credentials and supposedly was experienced in NVLD (for more on this see blog post When Professionals Tell You to Hide, 12/22/2020).
Instead of helping me to learn to be empowered within my abilities and be more fully myself as I navigate my world she seemed to want me to shrink. I asked how I could advocate for set up a question asking based training at a new job I was hired at to hopefully have more success in coming up to speed than I had in the past. She looked at me in fear and told me not to do that. She asked me if I knew what “matching” was, and told me to act like I saw my other new hires acting. In other words, choosing assimilating, looking “normal,” over advocating for necessary changes in my training so I could hold down my next job.
And worst of all, she told me to not be public about NVLD because it could get back to employers, and I wouldn’t be hired at future jobs.
I didn’t think what she was saying was right, but what is right and what you need to do to survive are not always the same things (which is why whenever I had the additional energy to fight for what is right I do, and always will). But her words held me back in creating a blog and telling my story.
Years go by, I end up working in the disability employment support field for six years. During that time I would hear similar feedback around me about disclosing disability on the job.
Then 2020 happened, I had just landed a job that had went permanent from temp only a few weeks before the world closed in March. I feel my employer is a safe place for being neurodivergent.
On July 22, 2020 I I finally jumped in to my childhood dream and published the first post of This NVLD Life.
And it has been the dream come true I have had since I was 10. I have gotten feedback that it has helped people in the exact ways that I hoped it would, that I wanted to be helped when I was going through so many of my challenging times. A few months later I decided to create a This NVLD Life facebook page to share the bi-weekly posts of this blog, and as time has gone on also share posts, videos articles and podcasts from lived experienced NVLD, autistic, ADHD, other LDs, and schizophrenic empowerment advocacy voices and occasionally my own shorter non-blog length posts on NVLD and neurodiversity.
Despite everything pandemic related, it has been an amazing year making this dream a reality, settling into married life. Although I loved employment coaching, and seeing my own neurodivergent career coaching clients I think using words, my voice, is the best way for me to use my skills right now at this time in my life. It has been so exciting to see so much growth in the neurodivergent voices that have grown through the pandemic. I hope that this blog and other advocacy remains a major part of my life going forward. And I want to thank you for giving a little blog on such an unknown neurotype a chance and I hope what I say here might help you to support the nuerodivegent people you might meet, empower you if you are neurodivegent, and have a moment to see the world through our less common perspective.
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.
Climbing Mount Lafayette, a long and strenuous hike in the New Hampshire White Mountains. As you may be able to see in my face I struggled with this hike. I was slow, almost didn’t make it down with daylight to spare. It left me with full body aches that made it hard to function for a few days, and I felt not good enough and less then my fellow hikers. But I did it. I’m proud I did it, but I can’t do this often. This hike is a probably the most literal illustration of this post.
**Please note: I usually like to use a few types of word and language and terminology that I see many different neurodivergent people prefer. I do this so people with differing word choice preferences feel included. I know many people don’t like the term deficits and weaknesses. I chose a different direction with this post. Since this post is directly about my experiences I am using the language and terminology about the disability part of my NVLD that feels most comfortable and authentic to me. It felt important to write this entry with the words deficts and weaknesses to be authentic to the experience.**
A big part of my NVLD experience is dealing with other people’s thought’s on how I should manage my nonverbal weaknesses. The neurotypical advice is often to do everything I can to make them go away.
I attended elementary through secondary school between the years of 1988 and 2001, so what I describe here is my experience during that time period.
I think it is important to spend time working on the weaker areas of skill for a child with a learning disability. , Whether it be mathematics, handwriting, spelling and grammar, reading, and any other specific skill set it’s important to put time and effort into learning these skills as a student. I agree an important part of special education services is improving these skills. Any increase in these skills will make the student’s life easier. Plus, children surprise us all the time. My elementary special education teacher asked me if it was ok with me if she used my story being one of her success stories to share with students and families. I had a significant reading delay –both comprehension and decoding the words– until I was 11 years old. At 11 I picked up Anne of Green Gables After falling in love with the wonderworks mini-series version. I was tired of not being able to read. It was a hard book, I worked on it for nearly a full school year and I didn’t finish it, but by the time I moved on to my next book I. Could. Read!
I had the same special education teacher from Kindergarten through 8th grade. My special education teacher said in her experience it was very rare to have a student go from having a significant challenge with reading and to having it not be a problem at all anymore by middle school. Looking back, it is pretty cool that Anne of Green Gables was the book that transformed me into a reader. Her story is a favorite amongst many neurodivergent girls!
(NVLD information note: Many NVLD-ers learn the decoding part of reading on the earlier side from the average child, though some continue to have some weaker skills in comprehension. When I was in my late 20s I saw a therapist who specialized in NVLD, and she told me that a lot of the NVLD-ers who did not learn to read early actually struggled with reading… until they were 11 or 12! Woah!).
But I remember it felt like far too much time in my schooling focused on the challenges and trying to make them go away. More of my educational time was spent on my deficits than my strengths. When you think about adulthood people’s success is based on the strength of our talents, not the minor improvements of our weaknesses.
So. My mind doesn’t just notice problems. My mind comes up with solutions. When I was in college and thinking I was going to be a teacher I had a lot of ideas of how I would create a classroom that served all students. I had a lot of ideas already in mind about what I was looking for. After my experience as a student with a learning disability, I had some clear opinions and ideas (if you want to read about how my college experience with elementary education went check out “Your Journalism Teachers are Doing You a Disservice.”)
I think a certain amount of time should be spent on improving the weak skill areas of a child with a learning disability. That specific amount of time will be different for each child. Things to consider would be the child’s mental energy levels for their areas of weaknesses (what many of us nuerodivergent and chronically ill adults call spoons, thanks to Christine Miserandino’s blog post). But I think even more time than that should be allowed for the student to “challenge” their strengths.
When I was growing up there was a lot of discussion about challenging children in school. I believe these campaigns and discussion were geared towards kids who would be considered in the “gifted and talented” category we often hear of. There were billboards by the highways with a child’s face and the words “challenge me” underneath. As an adult I seek out challenging work in my areas of skill and talent. Challenging my areas of skill brings me to life. My endorphins fire like crazy. When my stress levels and mental health is taxed challenging my talents can bring me back to wellness in no time. I think Muppett’s creator Jim Henson says it best:
“I love to work. It’s the thing that I get the most satisfaction out of and probably what I do best. Not that I don’t enjoy days off. I love vacations and loading around. But I think much of the world has the wrong idea about working. It’s accomplishment is more real and satisfying than finishing a good meal-or looking at one’s accumulated wealth.”
Growing up it felt like this focus on my learning disability weaknesses had the intent of trying to make them “go away” as weaknesses in comparisons to my peers (or sometimes, even better, in comparisons to my strengths. I noticed some professionals saw the comparisons in these two different ways. I was disabled if my weaknesses were below my peers OR I was disabled because my weaknesses were significantly below my strengths. The later perspective was more helpful to my growth.)
This “make it go away” focus became very damaging to my mental health as I got into my teen years. By high school I could see that it was not all going to go away by adulthood, even though I was wiling to work as hard as possible. My lowest mental health time period in my life was high school. I had a few personal challenges on my plate during that time period unrelated to my NVLD, dyscalculia, and dysgraphia, but my learning disability was a significant part of the stressors of my life that lead to an anxiety disorder and maybe even selective mutism and a short bout of depression ( I say maybe because I was never diagnosed with selective mutism or depression.)
I would have liked to have known that success as someone with a learning disability wasn’t going to be about how much of the challenges I was able to make go away, but how I managed them and how I relied on my strengths. If my special education experience had included how to come up with creative self accommodations throughout my life instead of a focus on improving skills I would have been much more prepared for my early adulthood. Such as how do I come up with and advocate for work accommodations. How can I use my talents to navigate around my challenges. How can I look at my ability profile and use that knowledge to choose the right jobs and employers? These were the things I feel were missing in my special education services that would have made the most difference in my life. These things would have lead to a very independent transition into adulthood.
As an adult I have still come up against people who have told me I should always be trying to improve my areas of deficit until they are no longer deficits. Pushing up against my NVLD/dyscalculia/dysgraphia deficits is extremely taxing on my spoons and takes away from my energy levels that can be used in areas I am much more skilled in. If I continue to focus on my challenges I will miss out on so much that this world has to offer me.
I know there will always be people in this world who will never agree that someone like me should ever stop putting significant time in our lives to making are deficits go away. I have had exes, and others who have come into my life tell me that not putting my energy into making these things go away is giving up, being lazy, becoming pessimistic, a sign of low self esteem, or many other statements implying willful failure.
I am done with spending so much of my time pushing up against so much of my nonverbal skill deficits. My ambitious nature has moved away from making them go away to finding creative ways to succeed. I often wonder if these people had my ability profile they may be making similar choices to manage their weak areas as well.
I’m the only one that has to live the life I choose. I choose to accept it is not within my power, as I get close to my 4th decade on this earth, to make my deficits go away. What is in my power is to continue to live and chase all of my dreams, like I have been these beautiful last 20 or so years since being an adult. Accepting myself fully for who I am has been one of the most freeing choices of my life and has lead me to succeed so many times.
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.
Enjoyng the great outdoors not long after this story
It was my junior year of college when an elementary education instructor, who I had also chosen as my el. ed academic advisor, said these words to me.
At the time I was double majoring in journalism and elementary education. At my school if you were an education major you had to double major, and if you were a journalism major you had to have at least a minor.
I was in my one on one meeting with my methods instructor, which is the part college classroom, part in the elementary school work-place course before student teaching. I had felt really comfortable with this instructor, and his words stung.
Now, let’s get this next part out and in the open. I hadn’t really WANTED to be a teacher. I wanted to be a writer of some kind. Books, scripts, newspaper columns (you know, that thing before blogging) you name it I wanted to write it. But writing is not a stable career, and a lot of people in my life encouraged me to plan a stable career with my college education. I was also encouraged to utilize the fact that I gravitated to working with children at that time, and was empathetic to them.
When I thought about being a teacher I didn’t WANT to do the job. I didn’t really want to spend the rest of my life in the school world. Although I loved learning and did like school I also found the structure of it to be overwhelming at times and restrictive. I decided that these mentors in my life were correct and that I needed to be responsible and choose a practical career and find a way to do writing for publication in my life in one way or another around my teaching career.
Also, as a young person just out of high school I didn’t understand how school board, and education laws and standards worked. I thought individuals teachers had more of the say and control about what goes on in the classroom then is the case. I thought even though I didn’t really want to do the job because I wasn’t excited about the work itself I thought I could get my professional excitement from writing and I would use my teaching career to Be the Change I Wished to See in the World by creating a classroom the met each student where they were, a classroom that would not be a place of any type of trauma for any neurodivergent child. I planned to be open about my learning disability in my classroom and teach my students that you can still grow up and be successfully while also have learning disabilities (I actually pictured myself giving this lesson after showing my students my dysgraphic handwriting). I felt I could create the kind of classroom I believed should exist for all students.
None of the people encouraging me to go into teaching seemed to notice that some aspects of what would later be called NVLD would get in the way of being a teacher.
And there were a number of things, I learned that day, sitting in my methods instructor’s office. We were required to create three dimension models and what I was creating was not up to expectation, he shared with me. He told me a teacher needs to be able to model neat handwriting (I have dysgraphia. Literally, I have a handwriting disability. I’ve gone through years of occupation therapy that got my handwriting to be as good as it was that day). And he gave me a critique I had never heard before but I have noticed it to be a challenge for me every time I have found myself in a job that started to lean towards professional lesson plan creation.
He told me my instruction was “tentative.”
I feel very comfortable leading activities and speaking in front of groups of all ages when I know my material. I can even improvise in areas I am passionate about and play off the energy in the room naturally. This ability all seems to go away when I have to follow a strict lesson plan, even if I were the one that created it.
It is hard to put my finger on why this happens, but I can’t seem to memorize my lesson plan as written and be present in the moment at the same time. Twice since then I have taken job that originally had more flexibility in instruction, only to move towards professionally lesson planning later, and I was no able to do it.
At the time my instructor informed me that he felt my instruction with the children to be tentative after he asked me how I felt I was doing. I was not aware of NVLD and wouldn’t be for six more years, but I knew I had a learning disability since I was five and I was used to accepting my learning curve and having faith that I would catch on after enough practice. I felt comfortable in my expectation that my instructors would know this (because I always let my instructors know about my learning disability) and give me that space to learn. This moment was the first time I experienced someone who saw my disability as an impediment.
“I think it is going well! I know I am not naturally yet, and it is challenging, but I’m just getting started,” I said. I figured that is what learning is about, and what being resilient is about. I wasn’t going to give up on something because I wasn’t good at it right away. If I did that I wouldn’t be the avid reader I was at that point, I wouldn’t be driving, or riding a bike, and I wouldn’t be majoring in journalism at that very moment. Heck, I wouldn’t have had friends and the great social life I had with my college social circle. If there was any major lesson I learned in my life up to that point it was to never give up simply because something I wanted was challenging. I honestly thought following a lesson plan was such a brand new and different skill than anything I had done before and I just needed to practice it in methods and, later, student teaching. By the time I was out of college I would be capable. Wasn’t that the point of being a students, I felt.
My instructor did not feel that way.
He felt if my handwriting, model building, and tentative teaching from lesson plans did not improve to the level of my peers in a short amount of time he would petition the department to not allow me to move on to student teaching even if my other graded material, brought my class average up high enough to pass. My deficits, neatly written out in all my public school documentation for all these years were going to literally bring down my opportunity to use my strengths.
And, perhaps what was the most painful in that moment, beyond the fear of not being able to pass a class (I never failed in my life, and only had low grades in mathematics) this instructor that I liked and trusted for years, who I chose to take methods early with so I could get into his class, told me my journalism instructors were doing be a disservice.
Spelling and grammar challenges are not an across the board deficit/ challenge for NVLD-ers. Some excel in writing mechanics. But in my research of my dysgraphia I have learned that writing mechanics are effected by this disability. I think this is a visual detail issue (so that would be because of mine own specific NVLD) but I don’t notice spelling and grammar errors most of the time while I am reading. As a whole I don’t notice small visual detail as well as the typical mind. For this reason I don’t learn spelling and grammar from reading the way other people told me they do. Spelling has never been a strong area for me, but I do remember in middle school being in the higher level grammar book and finding it pretty easy to learn grammar rules and do well on tests. Somehow though, applying grammar rules, like punctuation, while words are flowing through my fingers is a different story. My challenges with the mechanics of writing is an example of one of the ways my disabilities doesn’t bother me, but bothers others. I can write all day and not get tired because of these things.
I had found success in writing in high school, and even more so in college. I had been approached by at least two very challenging journalism/ creative writing instructors in college about my talent as a writer. When my methods instructor asked how I was doing in my journalism classes I stated “very well, all As and Bs in all my journalism classes.” In public school my IEP/504 and some language about not grading me down for spelling and grammar mistakes when I didn’t have the time opportunity to find a way to correct them. It is not required for that to carry over into college, so I am not sure how it seemed to, but I was doing well in my journalism courses.
I know there are people who will read this and say he has a point. Of course I wasn’t going to make it in the competitive world of journalism and writing if I couldn’t create clean copy on my own quickly. And this is exactly why I left the journalism field after the first time I experienced losing a job because inconsistently I could not correct my spelling and grammar mistakes when my writing left my desktop. But I just can’t agree with you. I can’t agree that a nueurodivergent person has to avoid using their talents and contributing to the world with those talents simply because the area also pushes up against their challenges. Not every environment will be a good fit, but there are accommodations both in the work place and things you can do for yourself (example, hiring a copy editor yourself if you can afford it) to be a writer with dysgraphia or dyslexia.
And he is far from the only person that brought this to my attention at that time in my life. One year later in my senior year of college, as I wrapped up a wonderful and very successful internship at a children’s magazine I excitedly sent the first draft of my paper about my experience to the executive editor because I was so proud of it and I thought he’d enjoy reading it. Instead of praising me for such a great paper about my experience working on the magazine he requested meet with him. It turned out to be a talk about how presenting a document with errors (errors I would not be able to see until stepping away from my writing for a day or two) to my editor could negatively effect my competitiveness in the field.
The difference for me, however, was the executive editor was giving me professional advice. He wasn’t telling me I didn’t have a place in the field of publishing. My internship with them was very successful and positive. He was letting me know something important and I could do what I will with that knowledge. What I choose to learn from that conversation was different than what I took away from the conversation with my methods instructor. One person told me there was no place for me in the teaching field if my deficits didn’t go away. The other told me I need to find a way to have clean copy to be competitive in some aspects of the publishing field.
For years I stepped away from writing for publication. Mostly because I personally couldn’t afford to hire a copy editor to work on everything I wanted to write (having friends and loved ones copy edit works for some, but I don’t feel comfortable with that dynamic with my work). This fear held me back for over a decade in my dream to start this blog. Then I got this idea. This NVLD Life was going to be vulnerable and honest about my experience with the purpose to open up the minds of those who don’t understand nuerodivergence while empowering other NVLD-ers and neurodivergent people. Instead of holding off until I could afford to hire a copy editor I realized put a disclaimer at the end of each entry felt more genuine.
The way I see it, it is highly likely I may have already lost readers who would have liked this blog, but could not get past the errors to even read down to the end and see the disclaimer. Maybe some did read the error disclaimer, and still can’t take in my writing on this blog because of errors. If that is the case I am willing to accept that, at least at this time, that person is not one of the readers meant for me work.
And that’s ok. I don’t have to be for everyone. But I do have a place in this world. My talents have have a place to shine even though that means my deficits are also on display. I am a full imperfect human and I am proud to be exactly who I am and how I present in this world.
To paraphrase the end of the John Lennon song Working Class Hero… “if you want to be [an imperfect] hero, well just follow me.”
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.
