Seated in our sixth-grade classroom in Newton in the Fall of 1962, Jean, a pretty, tom-boyish girl, and my desk-pod mate, whispered that she wanted to dance with me at Mr. Champagne’s initial dance class after school. I was in the stratosphere over Jean’s invitation, but wary as my dancing had been at best down to earth. The Virginia Reel in gym class had left me reeling with confusion. Still I rose to the occasion and gave my most creative reply, “OK.” Jean’s choice could make my formidable task of surviving the dance class more likely and perhaps even exciting. The gym, the scene of all my struggles with gymnastics, now could mark my ascension to the boyfriend/girl-friend zone. We wouldn’t be a beauty and beast couple which was comforting. Jean was blond and lithe, and I was tall, thin, with freckled faced even features, and I could see OK enough to dance without my goony dark glasses. I was only uncomfortable with my feet which protruded out to give me a penguin gait.
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Growing up with an NVLD brought many challenges though what was most challenging was transitioning to a new school year. Like most with the disability I was so routine driven and after being off from school for two months it was so hard to go back.
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I was diagnosed with NVLD at age 19. It was like a lightbulb went off because now my family had answers to all of the questions of why so many things were and still are challenging for me. Ever since I’ve been diagnosed I’ve been trying to make those challenges not seem so big and some of them have gotten easier to deal with. I’ve gotten better at reading social cues and body language by asking my parents what they mean when I see them in a TV show. I have also gotten better at doing math in my head by doing addition with easy groupings that equal five, ten, or 15. I have tried to make many if not all of the challenges easier for me because I know they can be and I want them to be.
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As children are transitioning back to school many with an NVLD are questioning the benefits. Since for many distance learning was easier as they no longer have to deal with social interactions so they had less concerns. However I know through experience how important connections are and recently being back in my hometown made me realize this even more.
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My best guy friend is one of the most wonderful people I’ve ever met. He’s smart, kind, caring, and extremely talented in many areas. He plays the piano better than anyone I know, he’s a passionate artist and produces his own music. He can solve a Rubix cube in under a minute, and excels in school. He often puts other people’s needs before his own, and will take the time to get to know the real you and gain your trust. He also has NVLD, which prohibits him from succeeding with fine motor skills, or even some emotional aspects such as empathy or ability to “bounce back” from stressful or upsetting situations. I’m ashamed to admit that I had no knowledge of this disorder before he mentioned it, which led me to wonder how many people actually know about it. Apparently there are lots of misdiagnosis cases, and people often don’t get tested for a learning disorder until they’re much older.
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My daughter, who is now 22 and a college student, was diagnosed with NVLD at age 9. The testing, which resulted in her diagnosis, was initiated because of concerns over her behavioral and academic challenges. My husband and I did not know what to make of her frequent meltdowns, fears, panic attacks, problems with transitions and difficulties with writing, math and making friends until we were told that she had NVLD. At that time, very few teachers knew or understood NVLD. Although she attended schools that helped her complete elementary and high school, I believe that she is smarter and more capable than the programs that she has had to attend because mainstream schools were too much of a challenge. However, for two years she did successfully attend a public high school and took honors classes, but by junior year the pressure was really intense and she was unable to pass the Algebra I state mandated test. I then took her out of state to attend a school that specialized in teaching kids with NVLD. School placement has been an incredible struggle!
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One of the things I am the most proud of was being raised in a family that never lowered expectations for me and always gave me the same opportunities as my sister. Although my sister was a much stronger student, and as a result had more opportunities, we shared many similar experiences which allowed me to have a “never give up” attitude, as I wanted to follow her lead. This led to greater success for me than many people believed was possible. Read More
Growing up with an NVLD I was proud to be in a district that supported students with learning disabilities as it allowed me to be successful, however going after a challenge and taking on new experiences weren’t really promoted which was discouraging as I believe this is so important for maximum success. Read More
A few years ago I submitted a blog to this site. It was shortly after, my son, then 12, was suspected to be diagnosed with NVLD as well as Tourette’s. At the time I was hopeful that NVLD would soon gain its rightful place in the DSM journal and we would soon be on a path to accessing “proper supports.”
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Hey all,
I’m Nyx. They’ve known I’ve had learning disabilities since I was 4, but I wasn’t diagnosed with NVLD until I was 16. My disparity is 99th percentile on my left, and 18th percentile on my right, which makes my disability presentation both severe and very rare, according to my psychologist, only 0.02% of people on the planet have a brain with that degree of difference. Life is… interesting. Read More