After 15 years we are finally beginning to understand our son.
When he began elementary school things were fine. He was an extremely bright child. By the time he was in first grade he was reading chapter books and excelling in math and sports. It wasn’t until he started second grade when I began to see he was struggling socially.
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I spend my summers, along with my husband and our two daughters in rural Vermont with 120 children who think of themselves as “quirky” – many of whom have a diagnosis of NVLD. Our community of over 200 people has an amazingly rare opportunity to spend the summer months almost completely unplugged. Aside from daily communication with parents via email and phone, we live without television, cell phones, video games. You see, we run a residential summer camp where we focus on the things that matter most…interpersonal IN PERSON relationships – something so many of us now struggle to find time for.
I just finished reading two articles about the impact of smartphones on our emotional wellbeing and our intelligence. Neither article was positive. The bottom line is that our constant use of our phones has caused us to feel more depressed, to sleep less, to interact with others less and to be more distracted. All of these factors are even more intense for teens who are using phones these days as a way to interact with peers.
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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 was pretty sure something was different about him when he was very young. He had a funny walk and would fall a lot because he was fearless and would move too fast. He often seemed to be in his own head and I guess you could say he was quirky.
When he was a preschooler going in for a teeth cleaning, the hygienist was kept on her toes trying to clean his teeth because he was so active in his seat. By the third grade he could no longer be managed in a regular education setting! To be totally honest, I don’t think he was ever highly engaged in his preschool through second grade experience, but there were enough other distractions in those primary classrooms that his challenges could still be overlooked… or accommodated by teachers or volunteers.
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The excitement mixed with a little anxiety most parents experience during a child’s senior year in high school. Mine is anxiety and uncertainty.
Seven years ago it was suggested my son may have Asperger’s. A few years later it just developed that he was simply on the Autism Spectrum. This was all unraveling while working on my Master’s Degree in psychology. My formal education, the intimate knowledge of my own son, and a gut feel persistently gnawed at me. The diagnosis just didn’t seem right. The pieces of the puzzle didn’t fit.
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My son, age 27, has NVLD. I do not have a written diagnosis for his NVLD as when he had his complete neuropsychological testing in 1998 that term was not used. His test results showed verbal spatial discrepancy of greater than 30 and WISC scores ranging from 5 on visual spatial tasks to 16 on isolated verbal tasks. (I am not a professional psychologist so I’m using this terminology as an amateur.). He struggled to get through high school and never formally met the high school graduation foreign language and math requirements. He did not go to college. He has had several minimum wage type jobs in landscaping and marine activities. He has no comprehension of why he can only get minimum wage jobs as his diagnosis has never been explained to him. I feel this is definitly hindered by the lack of a DSM diagnosis of NVLD. My son quit his job last week, and announced he must get a college degree to be successful. I don’t even know where to start in addressing this issue with a twenty seven year old young man, who wants to believe he is as capable as the next person, who could not sit still long enough for me to pronounce the words visual spatial deficit, but who verbally and in many ways intellectually is a lovely, strong, handsome young man who is totally confused about the world and how to fit into it and I as a parent am at a lost to help him.
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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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