Our diagnosis run-around, by Melinda

By February 3, 2017Parents 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.

I started asking about it when he was in first grade and everyone kept telling me he’d grow out of it. By third grade it was clear to me that he wouldn’t, and his grades were suffering. One teacher in particular would mark whole assignments wrong and happily give him an “F” to punish him for not writing more neatly.

He couldn’t catch a break without a diagnosis, but no one knew who could give it to him. I was bumped around from teacher, to administration, to Special Ed, to his pediatrician, and back again just trying to find out what kind of specialist to bring him to. Most of them had never heard of Dysgraphia.

I spent two days on Google and the telephone before I finally discovered that the magical professional I was looking for was a Neuropsychologist. We did two days of testing and finally got our answers, but it was so much bigger than I had ever thought it could be. It left me dazed. She told me, “I’m so glad you brought him in! Yes, he has Dysgraphia, but it’s part of a much bigger disability called Nonverbal Learning Disorder.”

I had never heard of it.

The more she told me, the more things made sense. It explained why he was a little bit clumsy. It explained why he wasn’t more empathetic; why he still had problems buttoning a shirt correctly; why he had trouble with multi-step instructions; why he was so smart and still failing in school.
It also became clear that disorganization and sloppiness weren’t just carelessness. He wasn’t even aware he was doing it until he got in trouble – over and over again.

Now I begin each school year by educating his new teachers about NVLD. I haven’t met anyone yet who’s heard of it.

The diagnosis didn’t take away his struggles, but it armed him with an IEP and some understanding from his teachers and administrators. School is still a struggle, but it’s so much better. I feel like he has a chance now.

Melinda

I’m a mom who is uncomfortable describing herself. I came here looking for some ideas for my son’s IEP. I’m so happy to know about the NVLD project.

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