My journey with dyslexia began over ten years ago when I was in second grade, and my mom saw that I was having difficulty. I was having issues with spelling, writing, rote memorization, and the pronunciation of unfamiliar, often multisyllabic, words. I would come home from school and ask her why I was so “slow.” She brought these concerns to my veteran teacher’s attention who shrugged it off as “age appropriate.”
Third grade was a pivotal year for me. Within weeks of starting school, my teacher asked to speak with my mom. My mom worked as a paraprofessional assisting special needs students in my school. I was evaluated by the school’s child study team and classified with a Specific Learning Disability- Written Expression. I can remember working very hard to do what I could to succeed, sometimes using different tools and techniques to enhance this process. I created my own dictionary with words that I misspelled frequently or had no clue how to spell. My mom created magnets and recordings of the week’s spelling list so that I could memorize it. I tried an electronic dictionary and a reading pen. I used a FM system with headphones to help me better concentrate on the teacher’s instruction. I also used an Alphasmart, a portable word processor to help with note taking.
In fourth grade, I entered the Scottish Rite’s Children’s Dyslexia Center and was part of their pilot group tutoring program. The Orton-Gillingham training I received there was life changing, and I continued at the center for the next two years with individual tutoring.
The next part of my journey happened in sixth grade. In my middle school, they created two classes to help students with strategies for math and reading for New Jersey’s standardized test, NJASK. I remember being so frustrated with the speed at which the class was taught, and I found it very difficult to keep up with the other students. This frustration led to me questioning, once again, why I was so “slow.” I communicated my thoughts in an email to my mom that said:
“Hi mom. I hate school. I hate tests. I hate homework. My homework and school work is very hard to me. My brain does not want to think. My brain is going down the tube. I need a break from school. Love, Willie”
This email made my parents realize that my public school wasn’t doing enough to help me. We then enlisted the aid of an advocate and started to look into other options for school. After researching and visiting several LD schools, we decided that I should stay in public school until it was time for high school.
Union Catholic High School, with its supportive community, was a great fit for me. At Union Catholic, every student has a laptop. The laptop allowed me to fit in with my peers and not stand out with my archaic keyboard like I did in middle school. I also found a creative outlet that any student needs, but especially a dyslexic student. For me, this creative outlet was participating in the school’s performing arts company. By the end of my senior year, I was a stage manager, president of the club, and a two-time recipient of the rare director’s award. On an academic note, that year I took AP European History, English Honors (3rd year), developmental psychology, as well as served as a teacher’s assistant for AP US History II.
During high school, I started to become an advocate for those with dyslexia. Early in my junior year, while doing a search on dyslexia and potential college, I came across the HBO documentary, “The Big Picture: Rethinking Dyslexia”. After viewing the trailer for the movie, I came up with the idea of a half-day conference. The conference would provide education, awareness, and the resources needed to help dyslexic children, with the audience of parents, students, and educators. I met with the Union Catholic administrators, and they eagerly agreed to be the host. It was scheduled for October 5th, 2013 and titled Spotlight on Dyslexia. I then went to work networking with those experienced in the field of dyslexia in NJ. Spotlight on Dyslexia was very successful with over 240 in attendance. I received support for this conference from Union Catholic, Decoding Dyslexia-NJ, Learning Ally, the Scottish Rite Children’s Dyslexia Center (Scotch Plains Campus), as well as financial support from the Learning Disabilities Foundation of America. In 2014, Learning Ally asked to use the Spotlight on Dyslexia name to continue the mission of providing education and awareness on a national level by organizing a virtual conference. The second annual Spotlight on Dyslexia virtual conference will take place on December 4, 2015.
In the summer of 2013, I interned at Learning Ally. I created the foundation of a database of dyslexia resources by state to enhance Learning Ally’s continual mission to help students with dyslexia.
Now I’m a sophomore at Saint Joseph’s University. I have decided to follow my passion of becoming an advocate for others utilizing the skills and experiences I have gained as an active leader within our student government. My major is now Political Science with an Educational Studies minor. I hope to get my Master’s in Educational Policy.
Though I only have one year as a college student under my belt, my freshman year was very eventful. In October of 2014, the NJ-IDA chapter awarded me with the Neiswand Outstanding Student Award. During my second semester, I met Dr. Carolyn Berenato, a Special Education professor at SJU. We realized that our passion to help those with dyslexia was strong and that together we could do something great. We began a research project on dyslexia resource guides with an introduction on dyslexia for PA and NJ. This summer we completed the research portion of the guide and a survey to parents was distributed to Decoding Dyslexia-NJ and Decoding Dyslexia-PA members. It provided us with insight as to the types of resources utilized by the parents and their children. After this survey distribution, several other Decoding Dyslexia groups from other states requested to be in the study. Dr. Berenato and I have decided to go national with the surveys this September.
Through the connections from Spotlight on Dyslexia, I have been honored to meet so many people and organizations that are working to bring awareness of dyslexia to parents, educators, and our legislators. I have met amazing people from Decoding Dyslexia-NJ, Learning Ally, LDA-NJ, IDA-NJ, NCLD, and several other organizations.
Through some of these connections, I have had the opportunity to get a first-hand glimpse at creating change through the legislation process. In June 2013, I testified in front of the NJ Senate Education Committee in support of a bill that provides the IDA definition of dyslexia to be used in the state’s code. The following week, I headed back down to Trenton to witness the bill being passed from the Senate floor with fellow Decoding Dyslexia-NJ members and Beth and Sammie Ravelli, who started the legislation journey several years ago. In January 2014, this bill and two other dyslexia related bills were signed into law by Governor Christie. I have gone to D.C., with Decoding Dyslexia NJ, three times to discuss dyslexia with our representatives. The most recent time was this past July for Dyslexia Hill Day. I was honored to help with the planning and leading of the student portion of this event.
I feel very fortunate to have met so many caring people who want to help the 1 in 5 individuals whose lives are affected by dyslexia. I have learned so much and am eager to delve further into the research and study of this “disability.” For me, dyslexia is not so much a disability as it is a way to connect with the strengths that coincide with it…and for those strengths, I am very grateful.
For more information on the Spotlight on Dyslexia, please visit http://spotlightondyslexia.com/.