Navigating the World with Dyslexia
David Kipnis and Lynn Gilliland know well the challenges that face a child with dyslexia, a learning disability (or, as Kipnis calls it, learning difference) that affects as many as one in five children. Dyslexia has also affected some very great thinkers and creators, including Albert Einstein, Walt Disney, Steve Jobs, Steven Spielberg and cellular phone magnet Craig McCaw.
For Kipnis, this knowledge comes first hand. He is a dyslexic adult. He is also the parent of a child with dyslexia and now serves as the director of Hamlin Robinson School’s Learning Center, which recently received the 2012 Washington Federation of Independent Schools Award for most innovative program. The Learning Center’s goal is to be an information, resource and connection hub for families struggling with dyslexia and related learning issues. Hamlin Robinson School has been teaching children with dyslexia successfully for nearly three decades.
“There is a need for a hub for both families and professionals and to find a way to provide services to wider populations of underserved students,” says Kipnis, of the Learning Center.
For Gilliland, understanding the world of dyslexia started in 2006, when her youngest daughter was in first grade and struggling mightily with reading. Outside assessments confirmed that she had dyslexia. In 2007, Gilliland and several other mothers founded Read On, an organization dedicated to raising awareness about dyslexia and related learning issues. Gilliland says she was “astounded” to learn that there is solid science which points to how to teach dyslexics to read, and is still astounded that “so few educators are trained in the science of reading.”
“We were very fortunate that we could provide our daughter with the outside resources she needed. In our personal experience, if we had been left to depend on our local school, they simply did not have the tools or knowledge to meet her needs. We know from research that the early years are precious for intervention. Delaying is not OK.”
“The changes that occur when a dyslexic student receives instruction that makes sense to them is at times astonishing,” agrees Kipnis. “One student said to me, ‘Finally, someone is teaching me in a way that makes sense.’ This student was 9 years old.”
We asked Kipnis and Gilliland to share their experiences with Seattle’s Child readers.
How do you define dyslexia?
Kipnis: I define dyslexia as a spectrum of ways in which people process information that makes it difficult to acquire language-related skills, which include reading, writing, math, and the flow of language. To me, dyslexia is anything but cut and dry. There is a classic definition that speaks to the core of the problem in reading: the sound to symbol (letters) difficulty. However, there are many different ways in which this can occur, and there are many overlapping possibilities such as sensory integration issues, executive functioning issues, attention issues and memory issues. Dyslexia does not present the same for all children.
Gilliland: Seattle’s Book-It Repertory Theatre is now touring Patricia Polacco’s book, Thank You, Mr. Falker (for information go to http://book-it.org/education/thank-you-mr-falker). I like they way they define dyslexia in their study guide: a term used for when a person has a hard time learning to read or interpret words, letters, and other symbols. The eyes and ears take in the information correctly, but the brain mixes up the information.
How does dyslexia impact children academically, emotionally and in the area of self-esteem?
Kipnis: Dyslexia has an impact – diagnosed or not. Both success and failure can be emotions that are embedded early on. I definitely find that students, when allowed to fail over a sustained period of time, begin to believe that they will not ever be academically successful. This is what you want to avoid, because the sense of failure can, in some cases, become a bigger barrier to overcome than the development of the language skills.
Gilliland: The statistics are sobering on what happens to many of the kids who fall through the cracks. The Washington State Report Card (2010-2011) tells us that 33 percent of Washington state students do not meet state standards in reading. Many students are told they are lazy, dumb, just need to try harder. There is nothing further from the truth! My daughter’s amazing third grade teacher always said, “No child is born lazy. All want to succeed.”
Can diagnosis and intervention lead to a successful school experience for children?
Kipnis: A difficult question that many families experience is whether their child’s academic struggle is a developmental issue or a neurological issue. Often families bounce this around until their child is distraught about how inadequate they feel in school. I receive a lot of phone calls from fourth and fifth grade parents who have become tired of watching their child struggle in school. When concerns begin, families should familiarize themselves with the common signs of dyslexia from a reliable source such as www.dyslexiahelp.com or the Washington branch of the International Dyslexia Association website at www.wabida.org.
I feel that when families can articulate the concerns citing specifics about their child’s struggles, this is reason enough to seek further assistance in a child’s education. The Learning Center administers a screening, offers tutoring services, and we commonly make referrals to outside tutoring and testing resources that might be a better fit for families. One of our goals is to get families connected to reliable resources, maybe with us or perhaps with someone else. Dyslexia is not a curable condition, but its impact can be significantly reduced. Early school interventions are key to building a climate where students can experience success.
Are mainstream public school systems/classrooms set up to help children with dyslexia?
Kipnis: Public schools have great educators with huge hearts, and lots of students with competing needs. I feel that the disconnect between the public schools and students with dyslexia-related issues lies in the fact that, more than typically learning students, students with dyslexia need a carefully chosen curriculum that systematically builds upon itself toward meeting the current standards. They need an environment that allows the time to automate basic reading and writing skills through explicit instruction and constant repetition and practice. Curriculums need to be chosen with this in mind; they need to be multisensory and allow for repetition each day and each year of some very basic skills. Most importantly, schools need to build time into the day to do this. In many ways, this is just good teaching strategy.
Ultimately, I think it might be the pacing that is the big difference between what is successful for many students at Hamlin Robinson, where our school day is designed around the acquisition of language-related skills. Many public schools are racing toward meeting standards at a pace that makes it very hard for students with processing differences. Schools that offer additional ways to be successful, such as programs in the arts, are critical, for it allows for success in other areas of the school day besides academics.
Gilliland: There are a few educators that are very well versed in this area and doing tremendous work in our schools. Unfortunately, according to the National Council on Teacher Quality report, “What Education Schools Aren’t Teaching about Reading and What Elementary Teachers Aren’t Learning,” only 15 percent of schools provide teachers with a minimal exposure to the science of reading. We need to start at the university level, teaching our educators how to help these kids.
How can parents ensure their child with dyslexia is served well by public schools?
Kipnis: Parents can insist that schools consider accommodations that meet the needs of their students. Try to be creative in developing strategies that might fill the gaps of what is lacking in your child’s classroom. Even when an IEP is not in place, schools should be interested in trying all reasonable possibilities. Student screening and evaluators include a list of recommendation that fit your child. Do not rely on the school to do it all; look for and develop outside resources and try, as much as possible, to get everyone involved to work as a team. Take classes that develop your skills in developing the skills of your student.
There are parent groups that are advocating for large scale school reforms to meet the needs of learning different students, and who are advocating so that more services can be covered through insurance programs.
Gilliland: I think the number one thing a parent can do is become educated on this issue. You will always be your child’s best advocate. You have to know the right questions to ask.
Are children with dyslexia less academically capable than those without?
Kipnis: While it is true that acquiring some essential skills is more difficult for students with dyslexia and related issues, it is not a matter of intelligence. Instead it’s how the information is disseminated in the brain. Often this processing difference results in these students struggling to keep pace with students who are processing “balanced.” While balanced students get the whole picture through traditional teaching methods, the dyslexic students might only get a portion of the meaning, almost like the class was being taught in a newly learned language. It’s the delivery and pace that is most disabling for dyslexic students, not their capability.
At some point, the dyslexic student becomes aware that they are not getting it as quickly, and they see themselves as different and this is where self-esteem can become an issue. This is compounded when their strengths are not given an opportunity to shine, especially when a school does not provide opportunities to shine outside the main academic curriculum.
Gilliland: Actually many dyslexics have above average intelligence! They simply learn differently. I believe with awareness, the educational community will be able to rise up to meet the dyslexics’ learning needs and focus on their strengths.
What is the classroom or school experience like for a child with dyslexia?
Kipnis: Physical and behavioral compensation is common for persons with dyslexia. The body is amazing in its capacity to compensate for all sorts of weakness. The dyslexic brain is no different. Most commonly, people with dyslexia will naturally emphasize their strengths and avoid the areas which cause frustration. Avoidance strategies for students with dyslexia can be pronounced and include acting out to avoid the work and the feelings of inadequacy, frustration and humiliation that accompany attempting to do the work. To help ensure that your student does not internalize these negative feelings, it is important to instill at an early age that we are all different in all kinds of ways, including the way that we learn and process information. I think it is helpful to teach students about the brain and how it works. It is also important to reinforce that it is not about intelligence but about each person’s uniqueness.
Gilliland: The classroom can be very harsh for a child with different learning needs; however, it does not need to be. It would be like you and I going day after day and being taught a subject in Chinese instead of our language of English, and the teacher expecting good results. However, in a classroom where the educator has the tools and knowledge to reach every child, the dyslexic is eager to learn.
Children don’t understand why everyone around them seems to be able to read. They wonder what the big secret is to learning to read. They may feel embarrassed, stupid, frustrated, confused and often isolated. I think every parent should read the book Mr. Falker to their struggling reader.
What teaching approaches to reading and other school disciplines work well for kids with dyslexia?
Kipnis: There are several strategies that are proven to be effective for students with dyslexia. We are very lucky in Seattle to have several leading educators in the area. For example the Slingerland Institute is located in Bellevue, and is the foundation to instruction at Hamlin Robinson. This strategy requires a school structure that allows the time and pace to focus on the core concepts needed to acquire the language-related skills. A great strategy that has been developed locally is Wired for Reading. Additional programs include Orton Gillingham (presented by the Institute of Multisensory Instruction), Wilson Reading Systems, the Susan Barton Method, and Lindamood Bell.
All these approaches can be found in the Seattle area, and all have classroom and individual tutoring uses. What these strategies have in common is that they are considered multisensory; they are explicit and systematic in their instruction. Research indicates that these components are essential to address dyslexia-related issues.
More About This Story...
- Book-It Repertory Theatre – The touring production Thank You, Mr. Falker! plays through December 2012. http://book-it.org/education/thank-you-mr-falker.
- Walk in Their Shoes – Hamlin Robinson School hosts this event, inviting participants to experience activities that simulate the difficulties that dyslexic students experience. This includes trying to read passages where letters are scrambled, missing or represented by symbols that you are unfamiliar with, trying to read when essential information is not included or at a pace so fast that you are left still attempting the first instruction when the teacher has moved on to new instructions. For upcoming events, go to http://hamlinrobinson.org.
- The Learning Center at Hamlin Robinson School – It offers families and professionals information and resources including screening, tutoring, teacher training, social skills groups, education fairsand parent and expert connection. http://hamlinrobinson.org/learningcenter.
- Read On – This Seattle parent-formed organization is dedicated to raising awareness about dyslexia and related learning issues. www.readonforkids.org.
- Washington Branch of the International Dyslexia Association – It provides a forum for parents, educators, individuals with dyslexia and researchers to share their knowledge. www.wabida.org.
The Hard Reality about Dyslexia and Other Learning Disabilities
- 35 percent of students identified with learning disabilities drop out of high school. This is twice the rate of their nondisabled peers.
- 50 percent of juvenile delinquents tested were found to have undetected learning disabilities.
- Up to 60 percent of adolescents in treatment for substance abuse have learning disabilities.
- 62 percent of learning-disabled students were unemployed one year after graduation.
- 50 percent of females with learning disabilities will be mothers (many of them single) within three to five years of leaving high school.
- 31 percent of adolescents with learning disabilities will be arrested three to five years out of high school.
Sources: National Longitudinal Transition Study (Wagner), National Center for State Courts and the Educational Testing Service, and the Hazelton Foundation.