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Treatment Myths, An Inconclusive Diagnosis and Dyslexia: My Struggle for Help

executive-functioning-brain-mazeImagine the level of frustration a young child must feel when he or she is truly putting all their effort into comprehending what they are reading, yet is unable to grasp any of the information. When I was in fourth grade I felt this frustration. I was told by many of my teachers that I “wasn’t trying” or “didn’t care” about the work, which left me feeling trapped. I had no way of proving that I wasn’t lazy and without a diagnosis of some sort, I didn’t know what to do.

My teachers spoke to my parents about my hardships with schoolwork. My parents, armed with this information, took me to have my visual acuity tested as they thought that that may have been the issue. The eye exam results showed that I had perfect vision, yet the optometrist prescribed reading glasses in hopes of curing my inability to read.

As the months passed, it became clear that reading glasses were not the answer. I was still performing at a low level for my age and was continuing to struggle. Finally my parents decided to take me to get evaluated for learning disabilities after they researched my symptoms and possible causes. I was so relieved! I finally had the opportunity to show my teachers and parents that I wasn’t stupid, which is how I often felt because I couldn’t read like my peers.

However, the results came back from my evaluation as inconclusive. In fact, my neuropsychologist stated that I did have learning problems, but with my high IQ it was very difficult to pinpoint an issue. My parents and I were completely confused and frustrated. We decided to take a different route, as we had no other option. My parents provided me with a scaffolding of support, which included a reading tutor, and pressed the school district for a 504 plan. With these strategies in place, I felt supported, yet without a definitive diagnosis my success was limited.

As time progressed, my parents and I felt that a reevaluation was necessary to qualify for an IEP which would give me the full support of the school district. I was tested two more times before I was finally diagnosed in my junior year of high school with dyslexia and other learning disabilities.

Overall, my experience was very difficult, but in the end I felt empowered and learned how to self-advocate. Our society has stigmatized learning disabilities as an excuse or a cop out. In my life, however, I have learned that being diagnosed has enabled me to really understand how I can succeed. It may take a long time for young children to receive the correct diagnosis, but that doesn’t mean parents should stop providing academic and emotional support. It’s important to fight for what you or your children need so that they never feel inadequate.

Jillian LevyJillian Levy is the Web Production Assistant for the Online Strategy and Engagement team at NCLD. She grew up with learning disabilties and is a champion of self-advocacy. Through her work at NCLD, she hopes to educate children and adults with LD to self-advocate as well.