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Parents Blogs

The Subtleties of NVLD

By | Parents Blogs

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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Is College a Realistic Option??

By | Parents Blogs

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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“Failure to Launch” in NVLD Young Men, by Pamela Vaughn

By | Parents Blogs

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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Is Homeschooling Right For You? The Pros and Cons of Taking Your Child Out of the Conventional Classroom, by Sally Perkins

By | Parents Blogs

It is assumed that every child must go to school in order to maximize their ability to learn and make friends. However, rules such as these do not include every type of child. For some children, especially those with a learning disability such as NVLD, school can be an incredibly stressful and emotional experience where no one really understands them or their needs. Indeed, this can quickly lead to social exclusion, bullying, and a lack of care from over worked teachers. If this sounds familiar, then it may be worth considering homeschooling your child. After all, you know how they tick more than anyone else.
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The Struggle of NVLD and the MN Education System, by Amanda Koski

By | Parents Blogs

My daughter Lexus has Nonverbal Learning Disorder. The fight I have been facing is with our school districts and trying to make them understand what NVLD is. I have been fighting this battle since my daughter was in 1st grade and have been blown off and disrespected by many in the school system. People don’t understand how severe NVLD is to a child who goes to school and it’s time that Nonverbal Learning Disorder is a recognized learning disability.
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A Tribute to My Son – Zak Jones 11/22/89, Rebirthed on 5/2/2017, by Sharon Jones

By | Parents Blogs

On May 2, 2017, at age 27, my son Zak (Zachary) Anthony Jones chose to no longer live with the pressures, NVLD or what we called NLD created for him in this world. A silent disability, where schools, doctors, and most psychiatrists have never even heard of, or even want to investigate or research or even try to understand. We would have to explain it to them, or in fact, beg them to even consider it a possibility or even listen to us! If it was not in their school specs, then it did not exist! Therefore there was never any help for my child here in the state of Ohio! Still even here in December, 2017, at the State Mental institution, where my son got placed on suicide watch. Not one Doctor, therapist or nurse ever heard about this disability, nor would they take the time to learn the easy ways of how to communicate with my son, while in there! We suffered through it alone. We couldn’t even find a psychiatrist, who understood it to even offer him a proper diagnosis! All we got was oh, what’s that, hmmm I’ll have to look it up (which no one ever did!) or oh well, it must be Autism, or he’s just fooling you, he’s just a smart-ass! How can he score 2nd-grade college level in 6th grade but, can’t organize his notebook, he’s just lazy! Time after time, my son was humiliated, due to the lack of understanding or their not wanting to understand!
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Our beautiful, angry, random, compassionate Kate, by Elizabeth Dohrer

By | Parents Blogs

Our journey with NVLD began 18 years ago, but we didn’t know it until Katie was in eighth grade. We knew Katie was different. When Katie was a toddler, she threw tantrums like a hellcat. No amount of coaxing, cajoling or threatening would make Katie change her mind about anything. As she grew, we didn’t know why she refused–vehemently–to do seemingly ordinary things, like ride a bike. She said she just wouldn’t. We believed we had a very obstinate child.
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Advocating For My NVLD Son, The Non-Voluntary Force, by Esmee

By | Parents Blogs

“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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Our Diagnosis Run-Around, by Melinda

By | Parents Blogs

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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The Light Dawns, by Shannon Badger

By | Parents Blogs

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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