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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One of the common misconceptions for those with a disability like an NVLD is that they can’t travel or enjoy special events such as Broadway shows. This is because they can struggle with over stimulation and furthermore doing these things can bring changes to their normal routines which can cause stress. The truth is, just like the academic and social challenges, there are ways to overcome these challenges which requires self developed practice and patience that both you and your family to put into practice.
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Sweaty hands, a racing heartbeat, a churning stomach and so many “what if’s” running through my mind. These were some of my thoughts and feelings when I decided to pick a college five hours away and move away from my parents for the first time in my life. I was 18 when I began college, and I decided to live in a dormitory. I selected a school away from everybody and everything I knew because I wanted to experience something new and exciting. I wanted a “new beginning” if you will, a new experience. I grew up in a small country town, and stepping into a city for the first time without my family by my side was nerve wracking. My family was very encouraging with my decision, and I’m thankful that I chose to leave for college.
Here are some tips I would like to share with other NVLDer’s who might also be moving for the first time:
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My entire life was impacted by something that I couldn’t explain to anyone because nobody knew what it was. In those days, children like me were set aside and considered lazy and unmotivated. Punishment came from both school and at home, as if that were going to make a difference to me. I was lost, sad, felt abandoned and not worthy of love or kindness. My middle school years were perhaps the most traumatic years of my life. I had no support from my family, actually I was bullied by older sibling at the encouragement of my father.
I’ve been on a lifelong journey to discover what made me different. Not knowing, yet knowing that something wasn’t right. I’ve been from neurologist to therapist to psychiatrist and back again. I received a diagnosis of ADHD and thought that might be that, it wasn’t. Thankfully I had neurological testing and that is when it was revealed that my particular issues were not ADHD but in fact NVLD. I was surprised to find out that what was wrong isn’t even listed in the DSM-5.
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Growing up, my parents never kept me from being involved in the community and at school as they were strong believers that inclusion needs to occur in all settings. Through this experience I had a great group of peer and adult support and was never a target for bullying. Yet it still brought challenges as on occasion as the resource room teachers didn’t quite understand why I was getting the extra attention from peers and teachers.
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I am 27 years old from NYC with NVLD. My childhood/adulthood was very rough. By the time I was 18, I went to 5 different schools. The bullying because of what I had was tremendous. The one thing that kept me sane and gave me a sense of escape was music. Through music I was able to perform in front of my peers and write my true feelings. I also was able to make friends and played in several bands and then ventured into the production chair. However, sadly my mom did not make me feel accepted as a person who has NVLD.
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One of the hardest things about overcoming an NVLD is that you have significant weaknesses and unique strengths so you need to figure out how to manage the two. Due to this you should remember when making some decisions about your IEP it is okay to say no at times. While having too many services and taking less challenging courses may seem beneficial, it can do more harm than good. Since it can negatively impact your self-esteem as you are reminded of your disability too much and you can feel you can’t achieve as much as your peers.
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My first time stumbling upon this website, I was relieved. Hearing the stories on the main page reminded me of my own experience. I’ve always known something was off as if I did not fit in with the society around me. I always had a poor memory and I only excelled in subjects that interested me nothing else. Except under pressure I can finish a 7 page essay 1 day before the deadline.
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In my previous piece I wrote about my biggest disappointments growing up in the small town of Ogdensburg. That was while inclusion was so important, there were always pieces missing. This is because they generally went for partial inclusion rather than full inclusion.
For example during my high school years we had C courses which were the least challenging and just for resource room students for English and Social studies. They included support of a resource room teacher, teacher’s aide, and sometimes a speech therapist. Due to these classes being limited to resource room students these students weren’t full inclusion students and for some students this was a mistake.
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One of my biggest disappointments growing up in the small town of Ogdensburg was that while inclusion was so important, there were always pieces missing. Inclusion is so much more than just putting us with regular peers; it is giving us equal opportunities to achieve our full potential and to connect with others.
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