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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Telling someone I’m on the spectrum is difficult, but things become even more complicated when you’re a speech-language pathologist. I knew from a small age that I was different from my peers but no clue that I had a learning disability that affected me socially, academically, physically, and emotionally.
Until recently I had never heard of Non-Verbal Learning Disability, and I have been a practicing speech-language pathologist since October of 2014. It presents very similarly to Aspergers but is different in several ways. For instance, I’m an auditory learner and struggle with fine/gross motor impairments, while many Aspies are visual learners and often do not present with as many fine and gross impairments.
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Had I known as a child that I’d grow up to be a published author, it would’ve provided me with comfort and reassurance in the face of trying times. It wasn’t easy growing up with an undiagnosed learning disability. Despite endless efforts, in school I remained brilliant in some academic areas, like reading and spelling, and highly challenged in math and science, puzzling and frustrating my teachers and family.
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I was diagnosed with a Non-Verbal Learning Disability when I was in my junior year of high school. Learning disabilities weren’t even on anyone’s radar, not my parents, not my teachers… not mine for sure. I was diagnosed with a chromosome disorder called Turner Syndrome and part of the followup testing for that was NVLD testing since it’s very common with those who have Turner Syndrome.
Suddenly everything made sense when we got confirmation of the learning disability. It made sense why I struggled so much in geometry and chemistry. It made sense why I had so many awkward social interactions as a child. Why I always wanted to draw but could never master the hand eye coordination to do so no matter how much I practiced. Why I talked to myself out loud when performing a task. Why it felt like I was blind despite having vision. It was also why I became an easy target for bullying in school.
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When I was diagnosed with NVLD, I was living in a youth psychiatric ward due to suicidal ideology. Everything about life was confusing me, I felt drowned by life itself. For my first 18 yrs, I had taken in all aspects of the world with alternative comprehension. This was not comprehended.
NVLD research and awareness matters.
It matters because I never knew there were reasons that could explain the science of why I struggle. Life is different with NVLD. Even before my diagnosis, I identified what I thought might be a difference, but without access to help, research, or a wide enough recognition of NVLD’s existence, there was no hope of finding an answer.
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It never made sense to me. Why was I in gifted classes in elementary school then as soon as middle school began, I struggled to maintain a C average? How could my elementary school teachers have been so wrong? At night, as I worked hard to complete my homework, I could not imagine some of my peers working so hard. I was always surprised to see them turning in their homework each day, seemingly unfazed by the amount of effort required. I surmised that I lacked work ethic and I’d better get myself accustomed to working harder. I asked my father who, despite performing terribly in school due to undiagnosed dyslexia, was a wildly successful entrepreneur -why school seemed harder for me than others. Without hesitation he assured me that was because, like him, I was not smart but how smart someone is – is not a measure of how well he/she will do in life. He said it was more important that I worry about being a good person and establishing strong work habits. And how to be resourceful. Like, getting people who were good in subjects to help me. And looking good. People care more about how good you look than whether you understand some random theory taught in school that has no relevance, he told me.
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In 1967 when NVLD was first recognized I was just 2 years old. It’s no wonder it took until age 51 to be diagnosed with NVLD. Although my disability went unnamed for those 51 years I knew I was different. I knew that my math struggles, spelling errors, messy handwriting and how hard it was for me to stay on track and prioritize tasks were signs that something just wasn’t right.
Moms and Dads and fellow NVLDers. Guess what — none of those things stopped me from having amazing life experiences, a fulfilling career, and making loving connections with people.
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