I work as a learning specialist in a mainstream independent school in New York City. In my role I see students with a variety of challenges and diagnosed learning disabilities. I currently work with one student, Ethan, who is diagnosed with NVLD. In a social, collaborative environment that demands strong independence and self-advocacy skills he has struggled. The give and take of social interactions and understanding what is appropriate behavior in the classroom can be difficult for Ethan. Together, we have developed strategies that help him advocate for himself and I have shared useful tips with his teachers so that their interactions with Ethan are productive.
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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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“I don’t understand, if this guy is going to die soon anyhow, why would you want to put on make-up before meeting him?”
“If the class is not a democracy, then basically you (the teacher) are the same as Hitler and Mussolini!” (not the most tactful thing to say at an Israeli school)
“What, did she just fart?!” (Imagine this: you are at dinner with friends where an elderly lady while coughing indeed suffers from the escape of some less pleasant gasses, ignored by all but emphasized loudly by your kid.)
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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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Our son has always been the “smart, lazy kid” in school. His work is sloppy and assignments get lost or forgotten. But my “lazy” child works very hard. I understand that when you have a student in your class who sounds like an encyclopedia, it’s hard to reconcile educational expectations with disability.
Our bridge to diagnosis was Dysgraphia. From the beginning of his schooling there were letter reversals. Sentences wandered around the page without regard for lines and margins. The spacing between words was random, if it was there at all. The way he formed letters was odd – retracing and doubling back in ways that were so much more complicated than they needed to be. It was all age appropriate in Kindergarten, and maybe even first grade, but it never got better.
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I have ten children and one with NVLD. Anna is 13 and at the age of 10 suddenly many of the important people in her life started questioning if something was wrong with her because of her speech impediments, meltdowns when put under pressure in new environments, her tendency to stare back at you mutely when you asked her to explain herself. Unlike many NVLDs, she is not very verbal, though all her other symptoms track completely with NVLD. A friend suggested getting a prescription from our doctor for an evaluation with an occupational therapist. Our dear doctor suggested a blood test for diabetes (Anna was diagnosed with Type II diabetes; we believe she comfort eats), and to the occupational therapist and speech therapist. She was diagnosed as having delays in visual perception and fine motor coordination; her large motor clumsiness was attributed to her overweight. The speech therapist focused on phonology and was just getting into communication skills when we had to quit therapy because my husband lost his job.
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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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I was diagnosed with NVLD in sixth grade. It was very hard to understand why I had this disability and what it even was. I had a rough time in high school with bullying, having separate testing locations, and always being pulled from class to be tested by a psychiatrist. I basically had no friends and I was failing terribly in school.
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The NVLD Project is supporting a research study on children with NVLD at Columbia University Medical Center. Our goal is to better understand what makes NVLD a distinct diagnosis. We are trying to learn more about how children with NVLD learn and if there are differences in the way that their brains work. In order to do this, we are having children come spend a day at Columbia University Medical Center. The day consists of spending time doing tasks and an MRI scan.
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