Journey with Dyslexia – Guest Blog by Robbi Cooper, a Bookshare Parent Member

Special thanks to Robbi, Andrew and Ben Cooper for their story and to the National Center for Learning Disabilities (NCLD) for showcasing the Cooper Family.  Our October blog recognizes National Learning Disabilities Month.

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My husband and my son are dyslexic. My husband, Andrew, did not understand that he was dyslexic until adulthood, long after reading difficulties in school left him frustrated – a fate that we did not want for our son.

My son, Ben came into the world a bright and vibrant child, but when he entered kindergarten we were told that he was not learning the way he should. We waited for the school to tell us how they were going to help him, but instead of holding Ben back, we asked for early testing.  He was diagnosed with dyslexia in first grade. That’s when we decided as a family that we needed to be a part of the solution so we began to research ways to help our child and to support our local school system with ideas.

My quest led me to NCLD – the National Center on Learning Disabilities, a quality source of information that I rely on still today. We also started private tutoring for Ben with the Orton Gillingham method-based reading intervention and signed Ben up for an individual Bookshare membership.  I began downloading accessible children’s books that I thought he would enjoy. We also made a pivotal decision to place Ben in Special Education where he could receive a different learning approach that would fit his needs. We never regretted this decision.

Special Education Presents Opportunities to Partner with Schools

For most families, interaction with a school is typically through parent-teacher conferences, teacher emails and IEP meetings. Many parents tend to rely on administrators and teachers to provide answers to their child’s education issues. In Special Education, a parent’s role changes this dynamic.  You become part of the team and are involved in the decision making process to craft your child’s Individualized Education Plan (IEP).

In Texas, my state, this team is called ARD (Admissions, Review and Dismissal). During the ARD meeting an IEP plan takes shape around these main tenets:

1. What your child’s diagnosis is and needs are
2. Academic goals and how to achieve them
3. Testing and classroom accommodations for your child to be successful

Andrew and I always tried to collaborate with school officials and share information prior to meetings. My focus was on future skills that would allow Ben to stay academically challenged throughout school while receiving help with his reading difficulties and to keep him on track for college and career.

Reading interventions are a big source of contention between schools and parents, and it helps to find out what the school currently offers and then research the resources before dismissing them. Remember, the more informed you are — the less confrontational you’ll be. A good resource for investigating reading interventions is The Florida Center of Reading Research.

In your meetings, aim for an IEP that will enable your child to be focused on remediation while becoming as independent and self-reliant as possible. We did not want Ben to rely on human support and Bookshare is a key resource to address this goal and to save schools money.

Memberships and reading technologies are free for U.S. students with qualifying print disabilities. Find out if your child’s school has an Organizational Membership to Bookshare. If so, it is easy for your child to get an Individual Membership so he or she can read books at school or home or on the go. This ability to read anytime and anywhere fosters a love of wanting to read longer and to read more topics of interest – a key to build stronger vocabulary and comprehension skills in feeble readers. Accessible books enabled our son to participate in general education courses that he was capable of mastering.

Remember to request a list of textbooks and reading assignments for your child’s classes in advance of a semester so these materials can be found, potentially in the Bookshare library or made accessible. I also encourage you to ask for training for your child on assistive technology tools, such as how to keyboard (type) and use software that has text-to-speech such as Kurzweil 3000 or iPad apps. These tools encourage independence and can help to prepare your child for postsecondary work.

In the early years, Ben struggled in school, but he never doubted himself. He had the support of our district’s technology specialist and the school librarian who embraced his new digital reading tools. These educators supported his reading growth by selecting stimulating material in accessible format for him to enjoy. Today he is a straight “A” student taking advanced courses, and his confidence is unwavering. Yes, he will always be dyslexic and struggles with reading, spelling and handwriting, but his mastery of the technologies he was introduced to in Special Education helped him tremendously. Last month, we stacked hardback versions of all of the digital books that Ben has read in one year. We were astounded at the volume of content.  Through Bookshare, he is self-reliant and we both know that he has a bright future.

Having two dyslexic loved ones has helped me to understand the challenges this disability presents, but I also celebrate a successful husband and a young son who already demonstrates remarkable academic achievements. I know that through hard work and collaboration with schools, we can accomplish amazing things. So I continue the journey to advocate for children, to discover their talents and potential and to celebrate the ways in which technology helps us all overcome our differences.

Watch the Cooper family tell  their story on video. 

Learn more about Accessible Books for Texas.