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.
By 3rd grade we found him what I initially thought was an appropriate school placement and it worked for awhile, but as the years progressed, intensive counseling and behavioral support didn’t seem to “fix” him. I decided to press deeper… Over the years there have been numerous diagnosis or impressions about my child’s presentation… Is it depression, anger, bipolar, Aspergers? These were just a few of the possibilities.
I knew something was off but never felt like any of these diagnosis nailed what I was experiencing with my child. We took a closer look with a specialist from Stanford University and were enlightened that perhaps he has NVLD. I am brand new to even knowing about this as a potential diagnosis, but I have to say, as it was explained to me, it really seems to fit my son. I am happy to understand and be affirmed he is amazingly intelligent with exceptional fluid reasoning skills, yet because of his deficits in motor skills and social skills, there are battles everyday… NVLD may be subtle to the passerbyer, but if you lived with my child only then when you understand the daily battle. Frustrations with writing and shoe tying, buttoning, and opening jars among them. I am hopeful learning about NVLD will be useful to his further educational and occupational pursuits!
I am a mother of a 12 year old with NVLD and Tourettes.Share your own story