Lorraine Hightower waded through the waters of special education and learning disabilities for many years before and after her son was diagnosed with Dyslexia. Because of her own experiences, she became an educational advocate for dyslexic students everywhere in Virginia. Her advocacy efforts have reached the Virginia State Legislature and Governor McAuliffe just signed into law a dyslexia bill that will provide for one Dyslexia Advisor in every school district in the state that employs Reading Specialists. I am honored to include Lorraine in our Parent with a Purpose series and share her mission at Decoding Dyslexia Virginia with you.
What is your mission? What do you want to accomplish?
As a mother who has experienced the emotional rollercoaster of having a child who 'learns differently,’ I want to prevent other parents from having a similar, often heartbreaking, experience. As a volunteer advocate, I provide support, resources, information about dyslexia as well as how to effectively navigate the special education process to other parents. Surprisingly, while the National Center for Learning Disabilities (NCLD, 2014) identified dyslexia as the most prevalent disorder under the subtypes of specific learning disabilities, the vast majority of public school Reading Specialists and teachers have not received any training on dyslexia. Dr. Sally Shaywitz, co-director of the Yale Center for Dyslexia and Creativity, estimates that 80 to 90 percent of children who struggle with learning disorders have dyslexia — as many as one in five children.
I still recall the frustration I felt at one of my first meetings with my son’s elementary school team when they refused to use the word dyslexia and insisted that my son was ‘just below grade level’ with his reading and would most likely catch up if placed in a small reading group. Based on private educational testing, we knew this was not the case and that my son would require remediation with a multisensory structured literacy approach to advance his reading skills. Unfortunately, since the school team was uninformed about dyslexia and appropriate remediation, my son was denied special education services at that time. It was only after learning everything I possibly could on dyslexia, working with professional parent advocates and seeking representation from a Special Education Attorney, that we were able to get our son some effective help in fifth grade. Ultimately though, it was too little too late and due to some emerging social emotional issues in middle school, we decided to move our son to a specialized private school for sixth grade. The journey my family has been on is not an option for many parents as it is time consuming and expensive and this too, motivates me to continue my efforts.
Since the specific learning disability of ‘dyslexia’ affects 15-20 percent of the U.S. population, I knew that while we felt very isolated in our school community, we were not alone. At this point, my personal mission was to speak up about the challenges we were facing in order to promote change… not just for my son but for all children with dyslexia who were going unnoticed and suffering each and every day in school. I also wanted to remove any stigma or shame from having a “special education student” when talking with other parents. I figured if I was comfortable talking about dyslexia and the impact it was having on my family, other parents might be willing to share their concerns and questions as well.
In terms of accomplishments, I want to see local policy changes as well as additional state legislation that will benefit dyslexic children. Working with other parent advocates to pass the first Virginia dyslexia law on teacher training has been very rewarding, yet there is still much work to be done. We are further pleased that just last week, Governor McAuliffe signed a second dyslexia law providing Dyslexia Advisors in Virginia school districts. However, public schools still need to figure out how to recognize dyslexia as early as kindergarten and train teachers to provide effective intervention and remediation. In my role as Chair of the LCPS Special Education Advisory Committee (SEAC), I am pleased to represent and advocate locally for the unique academic needs of all students with disabilities.
What inspired/encouraged you to start Decoding Dyslexia? Is there one specific moment when you knew this was what you wanted to do?
Decoding Dyslexia Virginia was established in 2013. Out of my desperation to connect with other parents in a similar situation, I reached out to Decoding Dyslexia Virginia and expressed my desire to become a Regional Leader in Loudoun County. Decoding Dyslexia is a nationwide network of parents leading a grassroots movement to improve educational outcomes for students with dyslexia. As a group, we are primarily concerned with the limited access to educational interventions for dyslexia within the public education system. We aim to raise dyslexia awareness, empower families to support their children and inform policy-makers on best practices to identify, remediate and support the dyslexic community in Virginia. Interested parents can find us on Facebook.
What lessons/values are you learning through this process? What lessons/values do you hope others are learning?
The biggest lesson I have learned is the importance of forgiveness. I have had to forgive myself for not trusting my gut when my son was struggling to read in first grade; I have had to forgive the public school system for not knowing about dyslexia; and I have had to forgive others who viewed me as an overzealous “helicopter Mom” whenever I spoke publicly about dyslexia and the impact it is having on both teachers and students.
Another lesson has to do with the importance of collaboration. From my background with the Parent Teacher Association (PTA), I already knew how powerful a collective voice could be. However, I hadn’t yet learned the effectiveness of cross-collaboration with like-minded associations. By introducing Decoding Dyslexia Virginia to the Virginia PTA, we created a powerful force during the state legislative session. This partnership was key in convincing members of the Virginia Dept. of Education as well as the Virginia Education Association that in addition to parents, teachers also wanted training and supports for dyslexic children.
As for values, I hope local school leaders and parents are recognizing the critical need to educate the whole child and not just focus on academics. Especially in Loudoun County, there tends to be an emphasis on whose child is gifted, whose child is headed to the “Ivy League colleges” and whose are not. A whole child approach, which ensures that each student is healthy, safe, engaged, supported and challenged is just as important to long term life success as the results of high stakes academic tests.
Who are your role models?
My role models are people who embrace life’s challenges and tragedies in order to help others. I am in awe of parents who have lost a child to disease, suicide or an accident and are able to use their personal story in a way that others can benefit from it. It takes a very special person who can set their personal grief aside and focus on how to help society as a whole.
What do you do to take care of yourself and how do you make time to do it?
Because my advocacy work can be exhausting and stressful, I make sure to take time to ‘breathe’ and enjoy my family every day. My bi-weekly Pilates sessions help me stay in shape, promote greater mental awareness and remind me to stay flexible no matter what. My husband and I take time to have coffee together each morning and our nightly family dinners are also an important time to connect and reflect on our day. Plus I am a big proponent of at least seven hours of sleep! It is amazing what you can accomplish in one day if you are well rested!
What can the Macaroni Kid community do to help you with your mission?
Help spread the word that dyslexia is the most common learning disability. Parents should know the facts about dyslexia and what the warning signs are before their children start school. They should also know that dyslexia is often inherited so if there is a family history of reading difficulties, waiting to see if a student will ‘catch up,’ is not the answer. Early intervention is key and can prevent social emotional issues from developing later on in children who aren’t identified until they are older.
Unfortunately, there are a lot of myths about dyslexia (i.e. they read backwards, it only affects boys, it’s a visual problem, etc.) which prevent parents from further exploring early reading challenges. Probably the greatest myth is that you can’t be dyslexic if you are doing well in school or getting good grades. The reality is in order to be diagnosed with dyslexia, a child has to have average or above average intelligence. So while many people hear ‘learning disability’ and assume it is related to IQ, that is not the case for these kids. In fact, many famous dyslexics ~ such as Pablo Picasso, Thomas Edison, Bill Gates, Walt Disney, John Lennon, Steve Jobs and Richard Branson~ have gone on to change the world in unimaginable ways.Past Parent with a Purpose spotlights:
