On May 2, 2017, at age 27, my son Zak (Zachary) Anthony 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 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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“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 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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My daughter was diagnosed with ADHD at 8 years old as well as a spatial learning disability. I went to many national conferences and read every book I could to try and understand ADHD and learn how to be the best parent for her. We got the educational part of the situation under control but other issues arose with adolescence. For example, we invited 12 “friends” to her 12th birthday and no one came. First sign to me that socially we were not handling the situation correctly. I went into a search mode to figure it out. Came across a simple bound book written about NVLD on the Internet. Bought it, read it, cried….it was my child!!!
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I am a parent of a 22 year old who was diagnosed with NVLD when she was in elementary school. My daughter had absolutely no sense of direction which made the prospect of her going out in the world and navigating the streets of New York City (where we live) very scary. What do I do, I thought. I can’t keep her tethered to me or someone else the rest of her life. Eventually, I said to myself, it is time to take the plunge. She was 12 at the time when her dad and I made the decision to put our fears aside. Thank goodness for cell phones. I knew it would be stressful to let my daughter out into the world but I knew it had to be done.
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