A local look at advocacy and dyslexia resources to help OKC families facing this lifelong neurological learning disability.
Tiffany Jenkins was in the fourth grade when she was identified as having dyslexia. Now the academic language therapist and mom of two helps other kids with the learning disorder thrive.
“It makes it easier to relate to the kids,” said Jenkins. “And for parents, they see there can be success on the other side.”
When a child is struggling with reading therapy, Jenkins reminds them she used to struggle, too, and now she teaches others to read. Her students are intrigued when they see her listening to an audio book or using a dictation tool, the same learning accommodations she recommends to them. It’s never lost on Jenkins how hard therapy can be for a child with dyslexia.
“They have a full day in class and then you’re asking them to do the very hardest thing for them when they are already exhausted,” said Jenkins.
Those challenges push Jenkins to advocate for local kids with dyslexia, including her oldest son now serving in the U.S. Coast Guard. Jenkins serves on the Dyslexia and Education Task Force created by the state legislature, helped write Oklahoma’s first Dyslexia Handbook to increase understanding about the disorder and serves as a state leader for Decoding Dyslexia Oklahoma, a grassroots group providing support, education and advocacy.
Vanessa Gerst is also a leader on the state task force and Decoding Dyslexia Oklahoma, and it was her oldest son’s difficulty with reading that prompted the former second grade teacher to become a certified reading specialist and academic language therapist. Gerst works in a northwest Oklahoma City school, the only certified reading specialist in her district.
Thanks to champions like Jenkins and Gerst, Oklahoma is making strides to provide more awareness about and resources related to dyslexia for teachers and parents.
“We can really give kids an easier life so they are not having to struggle and fail,” said Jenkins.
What is dyslexia?
Dyslexia is a lifelong neurological learning disability that affects an individual’s ability to recognize the differences between sounds in speech. According to the International Dyslexia Association, people with dyslexia often experience difficulties with accurate or fluent word recognition, spelling and decoding, despite proficiency in other cognitive abilities.
The National Center for Learning Disabilities projects one in five students has a specific learning disability, with 70 to 80 percent of those experiencing reading deficits. While not every student who struggles to read is dyslexic, dyslexia is the most common reading, writing and spelling disability.
An individual with dyslexia’s brain processes less efficiently than a typical reader. According to Melissa Ahlgrim, director of RSA curriculum and instruction for the Oklahoma State Department of Education, when a typical student learns to read, processing occurs on the left side of the brain with a clear pathway identified through brain imaging scans.
“In a student with dyslexia, you have things firing all over the brain, like a pinball machine,” said Ahlgrim. “By the time the information gets where it needs to go, the student isn’t able to process it because they have exhausted their capabilities.”
Laura Gautreaux, academic language therapist and owner of Encouraging Words therapy center, often fields calls from parents concerned their kids are reversing letters, a common misconception and developmentally normal until a certain age. Dyslexia isn’t reading backward or related to a child’s vision or hearing. It’s not more prevalent in boys than girls, and it’s not an intellectual or developmental disability.
The underlying issue is phonemic awareness: the ability to hear, notice, think about and manipulate sounds in spoken words.
“Not being able to rhyme, consistently mixing up letters or being late to talk are the biggest signs,” said Gautreaux.
Kids with dyslexia may struggle with organization or math and have noticeable issues with speech, particularly swapping letters. Kids cannot outgrow dyslexia, which Ahlgrim says speaks to why it must be addressed early. Smart kids can and do have dyslexia.
“When they are extremely verbal and using great vocabulary but struggle with identifying letters of the alphabet, that is a discrepancy,” said Ahlgrim. “Those should be developing together.”
The hardest misconception for Gautreaux to stomach is that kids with dyslexia lack motivation or are lazy.
“In reality they are working harder than anyone in the room, giving 110 percent, and year after year told they need to work harder,” said Gautreaux.
Dr. Erica Faulconer, a pediatrician in northwest Oklahoma City, says many learning disabilities have similar onset symptoms, making them difficult to distinguish. Dyslexia can be misdiagnosed as ADHD because kids have a hard time sitting still or completing classwork.
“Kids can’t focus or finish reading assignments because they get confused or frustrated,” said Faulconer.
Dangers of dyslexia
According to the Nation’s Report Card, Oklahoma students have lost ground in reading proficiency over the last two years. In 2017, 29 percent of Oklahoma fourth graders and 28 percent of eighth graders were considered proficient, compared to 35 percent for both nationally, according to the National Assessment for Educational Progress.
“If we don’t get reading right, [students] can’t do anything embedded in math, science or history,” said Jenkins. “Eventually they are left to jobs that don’t require reading.”
Poor reading skills, left untreated, can be an indicator of school drop out rates and incarceration. According to the National Assessment of Adult Literacy, 70 percent of incarcerated adults cannot read at a fourth grade level.
Faulconer says it’s critical for kids with dyslexia to be diagnosed and start intervention in Kindergarten or first grade. The longer an individual deals with untreated dyslexia, the more therapy they may require to read efficiently. Reading struggles can lead to stress, anxiety and depression.
“Kids experience trauma from reading difficulties,” said Jenkins. “They may be getting scolded or criticized at home, or not getting along with their teacher. I’ve seen kids as early as second, third and fourth grade having to be treated for suicidal tendencies. We can’t wait for them to be broken or fail [before receiving treatment].”
Catching dyslexia early
The Reading Sufficiency Act helps ensure Oklahoma students have the opportunity to develop strong foundational reading skills by the end of third grade. Schools are required to evaluate students’ reading abilities three times per year in grades Kindergarten through third, focusing specifically on phonemic awareness. Gerst says leeway is given the first semester of Kindergarten when many students can’t read on their own and are acclimating to a school environment. It’s often in first grade when students start falling behind.
“Some kids can hide it a little easier,” said Gerst. “When they start to take [reading assessments] on their own, as opposed to having them read to them, that’s when we really start to see them pull away from the class.”
Dr. Julie Collins, reading professor at the University of Central Oklahoma, says some Kindergarten and first grade students who score poorly on initial screening assessments will progress normally after receiving classroom instruction or intervention. Those who don’t need further evaluation and instruction. In either case, parents should ask questions at student conferences about how they are performing on assessments and whether there is cause for concern.
“Open communication is so important,” added Ahlgrim. “Those closest to the issue have the greatest potential to solve it, and teachers want to help.”
Family history of dyslexia, homework or reading taking an excessive amount of time, parents with an intuition their child isn’t performing at the level expected or even students feeling they can’t keep up with peers are signals to approach a classroom teacher about creating a new learning plan.
“It takes four times longer to remediate in fourth grade than in Kindergarten,” said Ahlgrim. “The gap continually gets larger and larger until it’s almost impossible to catch up.”
Gerst believes reading assessments have been effective in her district at catching students with reading struggles before the critical third grade year. But not all schools or districts have an onsite reading specialist or speech-language pathologist, also often knowledgeable about dyslexia. Without onsite specialists, many parents are left seeking outside intervention.
Students receiving reading therapy though Encouraging Words often come to them in third grade, when students are expected to move beyond learning to read to reading to learn.
“By the time students move to third grade they are no longer being taught to read, they are gathering information through reading,” said Gautreaux. “That’s not true of [dyslexic readers], so their peers are making huge gains and they aren’t because they can’t gather information like their peers.”
The challenge of a formal diagnosis
Though Oklahoma recognizes dyslexia as a disability under the Individuals with Disabilities Education Act, some schools throughout the state have been hesitant to name students with dyslexia. Ahlgrim believes that reluctance could stem from a lack of information about the learning disorder or even hesitation to “brand” students with a disability.
“They call it a specific learning disability, or SLD, which is an umbrella term,” said Gautreaux. “The problem is this broader category can fail the student by not giving them adequate and appropriate intervention. Specifically calling it dyslexia means schools need to provide targeted support students need.”
Faulconer says it’s imperative kids with learning disabilities get a formal diagnosis. Though most schools will work with students who have difficulty reading by providing accommodations in the classroom, students cannot receive additional time on standardized state testing or college entrance exams without a formal diagnosis. Collins adds a formal diagnosis is important when kids transition from high school to college, allowing continued use of accommodations for effective learning.
There is no single test for dyslexia. Students must undergo a comprehensive evaluation to make an official diagnosis, determining strengths, weaknesses and appropriate interventions. At the UCO Reading Clinic, the dyslexia screening is made up of 11 tests. Informally, students’ writing samples, reading, spelling and phonemic awareness can be assessed to determine their potential to have dyslexia.
Jenkins says most Oklahoma schools have the capability to test for dyslexia onsite but may not know how to use the necessary evaluations or feel qualified to perform them. Testing options outside of schools are limited in the metro. Though schools have an obligation to provide testing if parents or teachers request it, either onsite or through a third party, oftentimes parents get frustrated by long waiting periods as students fall farther behind.
“In theory, the district should pay for it,” said Jenkins. “But if a parent doesn’t want to wait or the school doesn’t want to use an outside source, they may pay for it themselves. Parents are giving up college funds to get kids reading.”
Completing the battery of tests outside of schools can be extremely costly for families, from $1,500 to $2,000, according to Jenkins, who paid for son TJ’s testing out of pocket, and Faulconer cites a range of $100 to $1,000, depending on tests. Even though dyslexia is neurological in basis, neither testing nor treatment is covered by medical insurance.
Ahlgrim suggests parents request a full educational evaluation in writing from a child’s school, rather than asking specifically for dyslexia testing. School districts must respond to parental requests within a “reasonable” timeframe, agreeing to evaluate or denying the request. If the district agrees, the request must be fulfilled within 45 school days of obtaining parent permission, according to Collins. If a school refuses, parents still have options.
“There’s a safeguard that can get outside testing paid for by the school,” said Jenkins, referring to the Child Find mandate, legally requiring schools to identify and evaluate any child it knows or suspects may have a disability. “No one wants to escalate a conversation, but you have to be strong voice for your child especially when they don’t have that voice yet.”
Both Faulconer and Jenkins share concern for lower income populations without the resources to secure testing on their own dime. The State Department of Education can answer questions about testing timelines, legal obligations and special education requirements, and the Oklahoma Parents Center, which provides training across the state on parents’ rights, the Individuals with Disabilities Special Education Act and special education, can assist parents in understanding their rights and student advocacy.
The power of intervention
With or without a formal diagnosis, students with dyslexia require explicit instruction, learning and practicing reading strategies one at a time.
“Kids with dyslexia need a very structured way of learning to read,” said Faulconer. “They need somebody who has expertise in that field, and they need extra tools, not just extra time.”
Parents should first ask what kind of intervention is available in the child’s classroom or after school by professionals with experience in dyslexia. Because proper intervention takes a big chunk of time in a student’s day or if a school doesn’t have the resources to provide help onsite, parents may turn to outside experts.
Gautreaux’s research-based instruction starts at the beginning with new students, discussing letters and how they are formed in the mouth. When students understand how they learn, Gautreaux finds they are better able to cope when learning is hard.
“Even in being supported, encouraged and learning specific strategies, there will be hard things,” said Gautreaux. “But they have the ability to persevere and work through adversity that a lot of students don’t.”
Gautreaux not only helps kids learn to read, she also provides emotional support.
“You see a kid who feels broken or thinks something is wrong with them, but once they get the right tools, they feel empowered and capable,” said Gautreaux. “They realize they have gifts and talents just like everyone else.”
Because students with dyslexia learn and process differently, they may require accommodations in the classroom that alter how curriculum is presented. Those could include extended time on assignments or tests, dictating or typing assignments, audio books and text-to-speech software.
Like a student with vision issues needs glasses to learn, accommodations for kids with dyslexia merely level the playing field.
Oklahoma’s improvements and next steps
In the 2017 legislative session, the Dyslexia and Education Task Force was created, which developed the Oklahoma Dyslexia Handbook for schools, teachers and families to better understand how to identify students who have reading difficulties and the best resources and interventions for them.
A new state statute will require that all Oklahoma schools provide dyslexia awareness professional development to teachers, beginning in the 2020-2021 school year. The State Department of Education is creating online modules about dyslexia, available to schools and teachers starting this year. Also through RSA, programs are available to teach the science of reading and how to meet kids’ needs who are struggling.
Through her work on the task force and with Decoding Dyslexia Oklahoma, Jenkins has found teachers are hungry for information, eager to help students who struggle with reading. Ahlgrim and Gerst, both education majors, note that neither learned how to identify or teach kids with dyslexia in their college degree programs, an issue that must be remediated for future teachers. Gerst and Collins question whether the new training will be enough to give teachers the tools to recognize symptoms and connect students to qualified resources. They remain hopeful it will at least start conversations and encourage teachers to request additional training.
“If what we want to [eventually] do is put specific teachers who are qualified at each school and provide instruction, we’ll need funding,” said Collins, who encourages parents who have kids with dyslexia to call their legislators to encourage that funding.
The recognition of dyslexia by schools, teachers and parents can give students the power to better understand themselves and learn the skills they need to read effectively and efficiently.
“It’s empowering for kids to give it a name,” said Gautreaux. “Whether you name it or not, they know and fundamentally think there is something wrong with them. Now they know they just learn differently.”
Local dyslexia resources:
- Decoding Dyslexia Oklahoma, decodingdyslexiaok.org. A task force of local parents and teachers providing parental support, resources, education and legislative action for kids with dyslexia
- Oklahoma Dyslexia Handbook, sde.ok.gov/special-education. Authored by members of the Dyslexia and Education Task Force appointed by the Oklahoma Legislature, providing guidance to parents and teachers on the best practices for identification, intervention and support for kids with dyslexia. Also find Oklahoma State Department of Education resources and contacts.
- Oklahoma Parents Center, oklahomaparentscenter.org. A federally-funded parent training and information center providing free services to Oklahoma families and teachers of children with disabilities.
- University of Central Oklahoma Reading Clinic, (405) 974-5711. Dyslexia testing and intervention services
- Payne Education Center, www.payneeducationcenter.org. A nonprofit organization providing dyslexia resources to parents and educators, as well as professional development opportunities
Other dyslexia resources:
- Bookshare, www.bookshare.org/cms. An online library for people with reading barriers providing free services for qualified students
- University of Michigan’s DyslexiaHelp app center, dyslexiahelp.umich.edu/tools/apps/all. Helpful learning apps for those with dyslexia and other learning disabilities, categorized by age and topic
- The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning, by Ben Foss. Written by activist and entrepreneur who has dyslexia, provides practical ideas and strategies for children with dyslexia to excel in school
- I have dyslexia, by David P. Hurford, PhD. An informative, easy-to-understand book for parents and kids with dyslexia to read together
- International Dyslexia Association, dyslexiaida.org/. Providing comprehensive information and services addressing dyslexia and related difficulties in learning to read and write
- Learning Ally, learningally.org. A nonprofit organization providing audio books and parent support services
- National Center for Learning Disabilities, www.ncld.org. Leading online resource for parents and educators on learning disabilities and related disorders.
- Overcoming Dyslexia, Sally Shaywitz, MD. Provides research-based tips on identifying dyslexia, working with teachers, exercises to help children with dyslexia and success stories of adults with dyslexia
- Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities, by David Flink. Offering advice on building self-esteem, reconstructing the learning environment, getting proper diagnoses and discovering the inner gifts of kids with dyslexia
- Wrightslaw: From Emotions to Advocacy, 2nd Edition: The Special Education Survival Guide, by Peter W. D. Wright, Esq. and Pamela Darr Wright. Providing tips on advocating for children with dyslexia
- Yale Center for Dyslexia & Creativity, dyslexia.yale.edu. Providing advocacy information to better the lives of people with dyslexia
For even more educational resources in the metro, visit our Everything Guide filled with the local resources your family needs in Oklahoma City, Edmond, Moore, Norman and beyond.