I remember starting school having no idea what was different about me along with being highly confused by the different services I received, as my friends were not going with me. As each elementary year passed, I started to have an idea about what was different about me. Later on things started to become even more confusing as social and academic demands were much higher. Socially, like all teenagers, my friends started to change, though with my disability I could not understand the rules of the game of adolescence. By that point, visual learning took place so it was clear I was starting to fall through the cracks. It seemed every day a teacher became frustrated with me though I was just overwhelmed and fatigued.
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This post is a follow-up to Katie’s first blog post.
As I come back to read these words one year later, I’m very glad to say that some elements have changed. I noticed changes even at the time it was posted, as the words were written before that, (and included a reflection that I’d worded even further before that), so no instantaneous, quick-fix solutions to report. But it’s true that time, patience and more awareness on my part, has eased how harshly NVLD seemed to limit my ability to function. A lot of the foundational struggles remain a constant. The main one being that I seem unable to focus and organize how, and when I want to. Though, as I read those words on avoiding what I love, and being unable to pursue what I am passionate about, I realize that these days, I try my hardest to do the opposite. I attempt to fill my time with people and community based projects that allow me to exist with a bit less fear.
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Few scientists have the opportunity to study their own disorder, however, that is exactly what I’m doing at the University of Southern California. I recently proposed a journal article on this diamond in the rough disability to provide intuitive cognitive models in tough spatial scenarios for NVLD individuals. Furthermore, I hope this will also reduce anxiety for NVLD test takers. Since NVLD is a small, under-diagnosed community with very few speaking on it’s behalf, I’ll give a snippet of what it’s like to live with it….
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I was diagnosed with NVLD at age 22.
At the time, I had switched programs at college – having just failed my studies in animation, where difficulties with certain aspects of the program became a final prompt to have me checked out for a possible learning disorder.
I was relieved, finally knowing what had caused so many grievances in my life both academically and non-academically; however, the timing of the news was a mixed blessing.
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Let’s start at the very beginning… a very good place to start.
So what is a learning disability? If you Google it, you will be linked to many definitions. The easiest way I know how to sum it up is an invisible disability that encompasses social, emotional, physical and fine motor challenges.
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In my experience living a successful and happy life with NVLD seems to be about finding–or creating– niches. It can be a confusing path to find them, but they exist.
I was diagnosed with having some sort of learning disorder when I was in kindergarten in the late 80s, but I wasn’t given the name nonverbal learning disorder until I went back for neurospych testing when I was 28. Growing up, academics seemed to be the focus of treatment for the condition, but I knew there was more to it. By fifth grade I seemed to have gotten academics down, except for math. I loved science (when it didn’t have math in it). But the things that I found the most challenging about NVLD were the parts that were not academic. I feel this was because no one was working with me on those things the way the did academics.
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Ever since I was little, I knew something was different. I hated math and science, because my struggles with them made it impossible for me to understand. My peers all seemed to hate me, and I couldn’t figure out what I had done to make them feel that way. I felt uncomfortable in every place I stood, no matter where I was. I hated (and still hate) when people touch me without permission. I talked too much, whether to someone else, or just to myself. Schools were unwilling to offer the support I needed, even when they didn’t have to do anything, other than listen to my doctor or another expert. I felt unloved. I felt invisible. I felt completely clueless.
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I often thought that if I ever wrote my autobiography it would be titled “Trial and Error.” Living in no man’s land, where you are hanging from the autism spectrum line, but not close enough to the Asperger net, was, and still is rough.
I can remember having meltdowns and sensory processing issues. I was very picky about the texture and feel of my clothing. I was still learning how to regulate my emotions and would have frequent meltdowns and anger outbursts. I also spent a lot of time in the hospital and felt like a lab mouse because no one knew what was wrong with me. I had fevers that would come every two weeks and sometimes the fevers would cause me to have seizures. As a child, my parents fought the battle with various teachers, while I was stuck feeling like a freak on display, both in an academic sense and in a social sense.
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I knew I was different all my life, but I thought that was a good thing, as that was the message “Dragon Tales” gave to me. I actually have traits of several disorders, but the thing that affected me most harshly was the fact that I prioritized verbal messages above all else. It was okay to “be myself” even if that meant picking my nose (a trait of repetitive behavior disorder, formerly thought of as OCD). My babysitter said it was “okay to cry” so I cried loudly in front of my classmates despite my teacher telling me I was embarrassing myself. When I was finally put in social skills training. I kept asking the speech therapists repeatedly what to do in specific situations and their answers were perennially vague. Due to my difficulties with timing and attention, I never mastered social skills in a group setting, and possibly never will.
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When I was little, the Drs thought I had A.D.H.D but could not figure out why it was so severe. Kids made fun of me, I ran into everything and I did not understand social constructs at all. Finally I was diagnosed with NVLD. It is now 20 years later, and I still struggle, but having a name for the disorder, and people who help and understand makes all the difference!
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