I read many of the posts here and share in your anger and frustration over where we are in 2021. I too, have a 20 yr old daughter diagnosed at 9 yrs old with NVLD. I have submitted questions to The NVLD Project over the years and never really received any helpful information although their heart was in the right place. I have a library of books on NVLD… at least 30. They basically all say the same thing & give the same treatment options: Social Skills Groups- I agree 100% the importance of social skills training but anxiety co-exists with this disorder and I can tell you from experience the anxiety & panic these GROUPS caused my daughter was counterproductive… & try finding 1-on-1 social skills training… it doesn’t exist.
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My little one was diagnosed a few years ago. How unfair? I thought since she was born DWM too. Now mental challenges along with physical challenges. Read More
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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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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My bright and verbal child started to show rocky behaviors in preschool. He was invited to leave a wonderful nature-based preschool because the owner could not manage his behaviors; we found a challenging and very academic preschool and that worked successfully for the rest of the year until kindergarten. School from that point, was a roller coaster depending on the educator. Read More
My son Matthew is 14 years old. I am a specialist in special education and crisis therapy. At 15 months, Matthew exhibited signs similar to Asperger’s, at 15 months, I began DTT therapy within the home. His kindergarten teacher had concerns, not moved upon. Second grade, I referred him to SPED, some odd red flag behaviors, though high IQ, refused eligibility. Fifth grade preferred him again, shut down the meeting because the evaluations were filled with scoring errors and contained no observations in almost an effort to hide the red flags. His IQ is astronomical, therefore never eligible for SPED. Took his 5th grade evals to a neurologist who said the differentiation between his VIQ and PIQ scores, though within the superior to average range, substantiate he has NVLD.
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I have to begin our story with the fact that I am a retired principal from a very progressive school. My wife is a Special Education teacher. Together, we have spent the past 30 years helping students with a variety of abilities to learn, encouraging them, helping them to grow, developing parent understanding and creating a positive environment for them to experience failure and to succeed. We have raised two sons that are on their way to successful lives.
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Two years ago, I was only the third parent to post a blog on the NVLD Project website. It is so wonderful to see how many people have found it and now know that they are not alone.
I would like to share with you the many ways Anna has progressed because so many of the people who have contributed seem to be discouraged.
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My smart, funny and witty started to show behavioral problems when he was young. It wasn’t until just after his 12th birthday that things finally surfaced. He had a psych evaluation to rule out autism-where I learned he had NLVD. Only that was where they left me. No mention of academic testing to learn his core deficits; I only knew he has NLVD. A teacher I stumbled upon when looking at homeschooling has sent me articles and links, including to your page.
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My name is Monie, I’m a Radio and TV personality here in the U.S, originally from London, England UK. I’m mother to 4 children, 2 of which are now adults. Of my younger children, boy aged 15 and girl aged 10, I have been met with the challenge of accepting this round won’t be the same as my first round raising my older daughters.
Specifically, my newest challenge has been with my 10-year-old daughter, whom has displayed both above average and also awkward and age inappropriate qualities among her peer group since Pre K and kindergarten years. At first I thought kids will be kids, and try their parents and any other authoritative figures, also kids get into spats with each other, it happens, but after moving several times with my job, and getting the same reports for the same types of occurrences from different schools, I had to allow myself the possibility that somewhere there may be a disconnect.
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