When Anna and Chris Thorsen of Nashville sat down for the first parent-teacher conference of their daughter Clara’s second-grade year, they weren’t surprised to hear that Clara was having trouble telling time. Her teacher also said that Clara seemed to learn something one day, then forget it the next; her writing was poor and slanted upward, no matter how hard she tried.

“My husband starts to smile and reaches over and pets my arm, because in that moment, we both know Clara has dyslexia. There’s no question,” said Anna Thorsen.

Thorsen knows something about dyslexia herself, having struggled through school, and having been diagnosed with it at age 27. “It was almost like her teacher was ticking through a dyslexia checklist and didn’t know it.”

In many children with dyslexia, a neurobiological condition in which the brain fails to read words or letters, a lack of swift and intensive intervention can result in reading failure as well as psychological difficulties for the child. When the Thorsens came home from the conference, they decided to get Clara tested immediately and then decide the next steps.

Challenges at School

Getting testing and intervention for dyslexia at their public school proved to be more complicated than it first appeared. The Thorsens experienced more hurdles than they had expected, including the most basic: recognizing that dyslexia exists. Thorsen recalled the Nashville school district telling them that the state of Tennessee didn’t recognize dyslexia as a learning disorder.

But the Thorsens, who are both attorneys, knew differently. The Tennessee statehouse had passed the “Dyslexia is Real” bill some months before, in April 2014. The law made provisions for dyslexia as a recognized reading disability, as well as for teacher training on dyslexia, both for teachers already teaching and in education schools in Tennessee. Yet while provisions had been decided at the state level, for one reason or another, they hadn’t made their way down to the district, which was still operating under old guidelines.

When the Thorsens showed the school and the district laws from both the federal government and the state of Tennessee recognizing dyslexia as a learning disability, their school listened and agreed to help Clara get what she needed. But the family received pushback from the district, which balked at giving Clara, whose tests showed she was highly dyslexic with a high IQ, an Individualized Education Plan (IEP) without going through the proper channel — in this case, 26 weeks of specialized reading instruction happening inside the classroom called Response To Intervention (RTI). If Clara failed to improve after 26 weeks, she would then qualify for an IEP.

With a positive diagnosis in hand, the Thorsens believed that 26 weeks of RTI would only delay a more dyslexia-specific intervention. They enlisted the help of the Office of Special Education Programs at the federal Department of Education to pressure the state of Tennessee to recognize dyslexia as a reading disability, even though the “Dyslexia is Real” law was already firmly in place. After a monthlong struggle to secure services, the district finally relented, giving Clara an IEP that focused on both her dyslexia and her giftedness.

The district said it is only following guidelines set up by the state of Tennessee. “We test for specific learning disabilities in accordance with state guidelines,” said Debbie McAdams, executive director for exceptional education at Metro Nashville Public Schools. “Dyslexia falls under the term ‘Specific Learning Disability’. The universal screening used in MNPS screens for basic reading deficits, including phonemic awareness, phonics, word reading and fluency, which are all deficits associated with dyslexia.” She said that students receive intervention for reading difficulties whether or not they have an IEP.

Dyslexia Recognition Elsewhere

The Thorsens are happy to report that Clara is currently receiving the targeted intervention she needs. But their story is far from singular: Families interviewed across the country reveal that both public and private schools aren’t fully aware of the signs of dyslexia, even though it affects 5-20 percent of schoolchildren. And, once diagnosed, schools are often unsure — or even afraid — of how to intervene. Currently, only 30 states recognize dyslexia as a learning disability.

But, according to Nancy Mather, professor of Disabilities and Psychoeducational Studies at the University of Arizona, screening and intervention, not to mention teacher education, mandated by law is much more uneven across states.

Dyslexia Map
Courtesy of Nancy Mather and Martha Youman (Courtesy of Nancy Mather and Martha Youman)

A disconnect between laws passed at the state or federal level and district enforcement is common, Mather said, and awareness needs to be raised about dyslexia as a learning disability. In an article soon to be published in Perspectives, the journal of the International Dyslexia Association, Mather and colleague Martha Youman highlight the inconsistencies of how dyslexia is defined in different states across the U.S.:

“A number of states have spearheaded the recognition of dyslexia as a unique disorder with prevalence rates varying from 5% to 20% among researchers and national and international organizations. This effort to recognize dyslexia is crucial because, unfortunately, the terminology used to describe reading disorders varies across states and settings. Individuals with dyslexia who are diagnosed in school settings fall under the category of “Specific Learning Disability (SLD),” a category within the Individuals with Disabilities Education Act (IDEA 2004). Individuals with dyslexia diagnosed in clinical settings fall under the category of Specific Learning Disorder with Impairment in Reading as described in the Diagnostic and Statistical Manual of Mental Disorders-5 (DSM-5) (American Psychiatric Association, 2013). Both diagnoses include “dyslexia” as a descriptive term within their definitions, but within school settings, the actual term “dyslexia” is rarely used in psychological and diagnostic reports. Thus, most parents of children who receive special education services at school under the category of SLD in reading have not been informed that their child has dyslexia. Similarly, if a clinical diagnosis of Specific Learning Disorder with Impairment in Reading is made in a clinical setting with DSM-5, parents and teachers may not necessarily understand that this label encompasses dyslexia. With the hopes of separating dyslexia from a large umbrella of learning disorders, the states of Alabama, Illinois, New Jersey, Ohio, Pennsylvania, and Texas, have passed legislation for the recognition of a dyslexia day, week, or month. On such dates, schools and mental health practitioners are encouraged to educate others about the common characteristics of dyslexia, as well as the appropriate accommodations and interventions.”

“Dyslexia is the most common type of learning disability,” Mather said. “Seventy-five to 80 percent of kids with Specified Learning Disabilities (SLD) have some form of dyslexia. But states have all kinds of terminology, and labels differ from state to state, which is why in Tennessee, they said, we don’t have dyslexia. It creates confusion. The parents are told their child has an SLD, but don’t realize their child has dyslexia.”

Even among the state dyslexia laws that do exist, many don’t have much meat on the bone. Passing a law creating “Dyslexia Awareness Month,” Mather said, is nice but isn’t going to do much to help the kids who are sitting in classrooms right now, struggling to read.

“When there’s awareness, you’re more likely to get the right kind of diagnosis and the right kind of teacher,” she said, but much more needs to be done. “Teachers need more training in specific methodologies, teachers need a strong background in language structure. They need very specific training to teach students with dyslexia.”

Advocating for Intervention

Families interviewed for this story reported feelings of panic surrounding the whole issue, from trying to diagnose a failure to read, plus the maze of tests, services and interventions involved, often coming with hefty price tags. Brooklyn parent Zanthe Taylor paid $4,000 for a battery of tests for her daughter, Calliope, when her private school requested independent testing. There were free options for both testing and tutoring, Taylor found out later, but she wasn’t made aware of them. And even the free options came with hurdles: wait lists were impossibly long, and free tutors had to come from a state-approved list.

The Thorsens attempted to get Clara tested at a highly regarded dyslexia clinic in suburban Nashville for $35, but were put on a seven-to-eight-month wait list. Impatient to begin intervention, they opted for a local, private center that provided a comprehensive test in the same week for $800. Both Taylor and the Thorsens also pay for private tutors on top of help received at school.

Experts like Mather and Maryanne Wolf of Tufts University say the core of the panic and confusion from states on down to classrooms can largely be avoided with proper understanding of what dyslexia is and what it isn’t. When schools and educators are properly trained on how to identify the different manifestations of dyslexia and to intervene appropriately, panic dissipates.

They confirmed that what families experienced was real, and part of a bigger picture: Many children aren’t receiving the diagnosis and intervention they desperately need to do well in school, and many families don’t have the means for expensive testing and tutoring.

“The kids don’t get any better, that’s what happens,” Mather said. “That’s the reality — it’s the fortunate few who get some kind of help.”

Mather worked with educational software development company MindPlay to develop a three-hour video course designed specifically for teachers to better understand dyslexia. 

“I think it’s important for teachers to have a basic understanding of dyslexia,” Mather said. “It makes them more empathetic, alerts them that this is a real problem. They may not realize how much it affects students’ self-esteem when everyone can read, and they can’t.”

Why Recognizing Dyslexia In Children At School Can Be Difficult 8 October,2015Holly Korbey

  • sgrammer

    Also called 2e or “twice exceptional” – she was gifted AND learning disabled. Even when the LD is one that a school generally recognizes, the high “IQ” can mask the LD and vice versa. Many do not receive intervention because they appear “fine” – until it suddenly catches up with them in middle school and they begin failing. Lots of research out there on this phenomenon, but many teachers and others don’t know about it or believe it :(.

    • Tiffiny Grale Dawson

      VERY TRUE! Thanks for pointing this out. My daughter is 2E, has gone through this and struggled in grades 2 through 4 (now in 5th). Finally got a tutor who does Orton Gillingham with her and she’s made huge gains already. But we’ve paid for everything privately (screening test, tutor) because the district took so long to recognize her needs and listen to our requests to get her tested that by the time they did their evaluations, she’d been in tutoring for a couple of months and had progressed. Therefore, her scores on the school’s evaluations are in “acceptable” range so the only option we have is a 504 Plan, not an IEP (because there isn’t enough discrepancy). Frustrating because we as parents know that her incredible intelligence has allowed her to create her own coping strategies.

  • Many of the children who struggle to read undergo a variety of evaluations. However, the one evaluation that is omitted is an evaluation of their visual skills. Their eye sight is checked. But rarely is someone really looking to see if their visual system is efficient enough to meet the visual demands of reading. What is demanded from our visual system as we read is enormous. From a visual perspective alone, reading is one of the most complicated things we do. Before we try and attempt to read the word we need to know where it is on the page. We need to direct both of our eyes to that place. and focus well enough. We then need to carry out a lot of visual processing to make sense of what we are looking at. We then need to be aware of where the next word is on the page, and move our eyes simultaneously and precisely. And we need to do that in a way that is efficient enough to leave us free enough to carry out all the language processing that is required at the same time. We live with the illusion that seeing is easy. This is a part of dyslexia in perhaps 4/5 kids who struggle to read. It can affect their handwriting and board-copying too. We need to make sure that our kids have good vision as well as good eyesight . 20/20 is NOT enough.

  • Nancy Duggan

    Massachusetts law is only for college entrance exams, dyslexia legislation is pending in MA.

  • The author uses RTI as if it’s bad thing, I’m not sure it means what the author thinks it means.

    • Labyrinthia

      RTI is only as good as it’s implementation. Usually the implementation is poor, so instead it’s basically a way to delay providing an IEP.

      Ideally, RTI recognizes a kid before the issues rise to the level of needing an IEP, and then provides intensive services on a 1:1 or small group basis to address the deficit. This usually is not what happens.

      • If a district implements RTI poorly it seems likely to me that any IEP would also be poorly implemented. I’m curious, why do you think RTI is more often used as a delaying tactic instead of a beneficial way to provide services to a child? I am doubtful that the majority of educators think their implementation’s primary purpose is to delay a child’s access to special education services. Perhaps there are some districts which feel they would be “robbing peter to pay paul” because they are understaffed, but that’s a symptom of underfunding of special education. Shortage of funds doesn’t forgive when a district excludes a child with legitimate needs, but I think it’s important to recognize the problem as a (perceived?) shortage of resources. I’m skeptical of the singling out of particular diagnoses or eligibilities for legislative action. I worry that it simply adds litigation without improving access.

        • Labyrinthia

          Most RTI programs I am aware of are administered for 20 minutes 2-4 days a week with a teacher:student ration of 1:18 to 1:28. Teachers usually lack appropriate materials or training, and it’s usually not implemented by special educator. Methods that do not work (such as round robin reading or silent reading) are frequently used.

          Special ed services at least need to be provided by a special educator who has training in addressing learning disabilities and have limits of teacher:student ratios of 1:8 to 1:12. There is also legal recourse if the services aren’t provided.

          I am not saying that the teachers aren’t well intentioned. I am saying RTI is not being implemented properly in most schools where I live, and as I live in a fairly progressive area with very diverse school districts I would say it is likely fairly representative of implementation in most states.

          If you have a child who is reading below grade level, the best intervention for that child would be targeted, daily, 1 to 1 instruction. It doesn’t have to be prolonged, 15-20 minutes on a daily basis is usually sufficient if the child in an enriching classroom environment. Second best is daily small group with ability matched peers. Unfortunately the reading specialists who could be providing this have been eliminated in my district and several neighboring districts.

          • Your understanding of RTI implementation seems a lot deeper than mine. From what I understand about RTI the whole point is to measure an intervention’s success.The best interventions are those where a significant fraction of students don’t eventually require additional services (regardless if it is by special or general education faculty). If RTI is implemented by your district with fidelity there’s data showing how students respond to how they structure their interventions. That said I’m sorry that the RTI implementation in your district seems to serve as a holding pattern for access to other special education services without providing any benefit.

          • BintelGrrl

            I do not have a child with dyslexia, but none of my friends with dyslexic children have stuck it through RTI before finding and paying for private support. They all say that the teachers are not trained to support dyslexic children and they feel like RTI just holds the kids back from getting useful help until they fail–which has lots of associated problems. My child has dysgraphia and we pay for private handwriting tutorials given by a dysgraphic specialist to the tune of $400 a month. We also had to pay for the testing. She is too young for the demands of handwriting to show up as anything as “not using time wisely,” “not doing work” and “being lazy” type behavior problems, but at this point, all the shame of not being able to be good no matter how hard she tries has turned her into a psychological mess. Her IQ is in the 99th percentile. We have spent thousands of dollars, and we will help her pull herself back together. I do not understand what people who don’t have thousands of dollars are supposed to do. Special education is broken and completely underfunded, which means nothing works the way it was intended to.

          • From my understanding testing should be available from the school district, although it may take a significant amount of correspondence between the parents and the school district to access it. I am skeptical of the objectivity of for profit services offering testing and additional services. I worry that they can easily prey on families with legitimate needs who are unable to navigate the public school system to receive services for their children.

          • BintelGrrl

            From my experience, the testing available from the school district doesn’t work until it is too late. If by “for profit services,” you mean educational psychologists and neuropsychologists that do complete batteries of tests that show serious discrepancies between differing parts of IQ (i.e., can separate a child’s verbal IQ from processing speed), the 2E children (like my child and the child in this article) are going to be left behind. I have no doubt my child’s dysgraphia would be caught by the school in a few years, when she’s making Fs. Right now she is making As and working above grade level. Without accommodations, she would probably be making As and Bs this year and some Cs next year–and she’s never going to do poorly on a standardized test that doesn’t involve physically having to write. Children’s learning differences need to be caught before they fail, not afterwards. What should happen is not happening–and the survivors are the people who can pay.

          • Yes, I do mean the educational psychologists which work for a for profit company. I don’t see a motive for a school district to deny service. There is a straightforward motivation for a company to over sell services to desperate parents to increase profits. School districts employ educational psychologists who use batteries of tests to quantify discrepancies between a child’s abilities (IQ, processing speed, spatial reasoning, etc) and their academic performance. District educational psychologists use the same set of tests and have the same qualifications as their private industry counterparts. Parent’s are often under informed (an error of omission by the school) about how to access the school special education services such as testing, or specialized instruction. Parents place their child’s needs first and it is all too easy to take advantage of parents who are unaware of the services available from their school and instead charge them for what would be a free service from their school district.

          • BintelGrrl

            What should be happening and what actually is happening are totally different things. I don’t know what to say except for that through the fighting we have done–and it has been a knock down, drag out, four year fight–I have come to see that a lot of kids who could be okay aren’t going to be okay.

  • tkeeler

    I have had great success with Dyslexia Solutions by Reading Mathematically© http://www.readingmathematically.com

  • ebw3

    This story could have been my daughter’s story, 15 years ago! We lived in OK during her elementary years where, finally after my insistence for two years, she got tested. The school said her IQ was very high, with a learning disability. I then took her for private testing at the University, where they diagnosed her as Dyslexic, when I took those findings back to her school, it didn’t change anything, they kept her IEP the same and fought me on any recommendations towards specific intervenfor dyslexia itself. This struggle remained through out her school years. It was worse in FL during her middle school years & actually better in TX during her last two years of high school. In college, where I thought we had put this all behind us, there were still issues with some of her professors recognizing that she a learned different way. She is 23 now and still feels the shame and struggle from those early school years when she thought she was dumb.

  • HB

    I live in Columbus Ohio. My daughter attends one of the top rated schools in Worthington. I begged the school to test her for dyslexia the first day of first grade. They fought me for for years. Finally, after their interventions failed to work in helping her read I paid for a psychologist to test her. She has full blown dyslexia. I then hired a child advocate to fight the school and get my daughter the help she needs. I am in the middle of it and my heart breaks every day for my sweet daughter. Her iq tested extremely high so she was able to fill in a lot of gaps during reading for the first three years of school. Now we are in the fourth grade and she’s reading at a first grade level. The school failed my daughter. I’m getting her tutoring outside of school by an OG specialist who recognizes my daughter is extremely gifted but can’t read a paragraph without struggling. It’s four times harder to treat a dyslexic who is newly diagnosed in the fourth grade than had she been diagnosed in the first grade because her neural pathways have already been set. Schools continue to ignore these children all over Ohio. Parents need to unite and so what Upper Arlington did in 2011. Google the class action lawsuit 17 parents brought against the school system for failing to diagnose and treat dyslexic children. If we unite we can make a change.

  • In the state of Georgia it is difficult for the student to get assessed for any type of exceptionality beyond that of a physical or mental disability. It may take up to 18 weeks of Response to Intervention data before a student begins the testing process and at that point, the student has already lost a half year (or longer) of instruction. If any parent is in doubt, they should discuss the situation with their child’s teacher first and if necessary, find outside sources of support to help their child acquire the skills needed to read. It should not be that difficult to give your child the ability to learn effectively, especially in these formative stages of intellectual development.

  • Deb Maltby

    The stories of how horribly school districts treat students with dyslexia are everywhere. Both of my children are dyslexic and I had to fight my highly regarded school district every step of the way, from asking for testing (which they delayed for six months until I learned that I had to put my request in writing for it to be put in the queue) to explaination of test results which never, ever used the term dyslexia. My kids are now doing fine in college but I will swear until the day I die that the hardest part of being a parent was getting them through the public school system. They often came home crying because they felt stupid. I even had one teacher say to me that “some students have to get the C’s and D’s” The school’s reading interventions were geared almost exclusively toward students who had been raised in literature poor environments, even though our community is affluent and well educated. The teachers continually insisted that my kids academic problems stemmed from watching too much TV (we didn’t have cable) and drinking too much soda (they don’t even like it.) I shudder to think what would have happened to my kids if they had parents who weren’t well educated and didn’t know how to fight. In fact, I often wonder how teacher’s and districts can write off so many kids every year and just shrug their shoulders. When I finally found a reading specialist who “got it,” she told me that even with her PhD in education and fifteen years in the field, she had never had training specific to dyslexia. She had paid on her own dime to attend workshops on Wilson reading because of the kids she saw struggling every year. It’s not rocket science. There are good interventions based on Orton-Gillingham multisensory approaches readily available. I recently met a woman who is quite well off and has a son who is dyslexic. She offered to pay for reading specialists at her school to attend Wilson language training and the district turned her down. There is a saying that dyslexics are overrepresented in board rooms and prison cells. Dyslexic people are amazing out of the box thinkers and schools are deliberately failing them.

  • Robert Bodenhamer

    I know myself the struggles these children suffer. I was three months from graduating high school when my English teacher kept after class one day and asked if I’d every been tested for Dyslexia? I told him that I had never been asked or tested. His response was during class discussion I was an honor student. But when I wrote in my journal going from my head to paper it got all turned around and out of sorts. He told me he had read my work long enough he knew what I was trying to say. So I got tested like he asked, and sure enough I had a mild form of Dyslexia. He passed all information along to my college. Thanks to him I now hold certification’s in Emergency Medical Technician/Firefighting,Certified Nursing Assistant II. I work full time in a Emergency Room in a busy hospital and when I’m not there I’m working as an EMT/Firefighter in a local Fire Department. Is been hard struggle that I still work with to this day at 43 years old.

  • mildmannered

    My dyslexic husband stuck with a barely ok job for 24 years, afraid to go out and have to learn something beyond his capability. Back in the 1950s he started school speaking only Italian and teachers chalked up his reading difficulties to that. It’s just too bad for him that not recognizing the problem colored his entire working life and self-esteem.

    We’ve learned so much since then. I hate that so many parents still struggle for help.

  • Harry3w

    I think you are missing part of the issue here. I can totally sympathize with some of the other comments made below, since we had similar struggles for about 3 years. We live in a state that has enacted laws and a dyslexia handbook, but the success of that is driven from the top down by the school administrators as teachers often know what is going on, but keep their mouth shut so they can keep their job. We went into school with testing from one of the top dyslexia evaluation centers in the country and were essential told this: We don’t know why your third grader reads at a 6 grade level one week and not even a kindergarten level the next, even though that testing diagnoses dyslexia, we don’t see any signs of it at all (nor had they actually tested for it). However, don’t worry because your child will have no problem passing the Staars/Taks/Common Core type testing, but at such time as they do have trouble passing and it reflects badly on us as teachers, administrators and a school district, we will dig into it further to see what can be done to help. After five years at a private school for dyslexia our child went on to graduate from a collegiate high school with an Associate Degree and transfered 60+ hours to college. Luckily we were financially able to help our child, but I always wondered what less fortunate parents were able to do and how their kids get cheated by the system.

  • Olentangy Dyslexia

    Helpful article. Parents should know, however, that two things are missing from this article. (1) The RTI model CANNOT be used to unnecessarily deny or delay an evaluation and (2) parents can obtain a private comprehensive evaluation (IEE) at the public expense.

  • Jennifer Zapf

    Well the New York State Dept of Education thinks they’re so great, but they aren’t a believer in this at all!! So frustrated with a district that really doesn’t believe in IEP/504 and that has child psychologists that tow the party line.

  • mohaliarena

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  • TNMAMA4

    Unfortunately, this article is not entirely accurate insofar as the current status of Tennessee law. A friend shared this article with me, and I was very excited to read about it; I wondered why I hadn’t heard about this from the administration at my daughter’s private school for kids with dyslexia. I’m also a lawyer, so I did a little digging. Sadly, this law did not actually pass in Tennessee. It only passed in the Senate but did not pass in the House, probably because of the fiscal impact. Ultimately, what passed was only a very weak law that deleted all of the language of the original bill and ended up simply requiring that the Tennessee Department of Education provide web-based or in-person training on how to provide effective teaching to children with dyslexia. However, there is no statutory definition for dyslexia, so what this “training” will be in practice is very unclear. The fiscal impact statement can be found here: http://www.capitol.tn.gov/bills/108/Fiscal/FM1673.PDF The Bill as originally proposed was a very robust law (that would have had a significant fiscal impact on the state’s budget) and that is what is discussed in this article; however, what passed is really nothing (with no significant fiscal impact). It’s really sad for those of us in Tennessee who have kids with dyslexia.

  • Nancy Duggan

    I appreciate that this article gets at the heart of the problem. However, the legislative map is not accurate – Massachusetts has no laws defining dyslexia or advising any protocol for dyslexia – they are prosed but not passed. Legislation prosed will use the IDA/NIH definition and advise about early screening and evidence based practices that are dyslexia specific based on evidence.

  • The Thorsens’ experience is pretty common with many parents experiencing the same thing. Unfortunately with school budgets stretched thin, the schools don’t have the resources to give children the interventions that are scientifically proven to help dyslexics. However, with continued advocacy from parents, things should get better.

  • Edleader

    Every elementary classrooms has children with varying degrees of dyslexia. Most k-2 teachers have not received formal reading training besides balanced literacy. Many special educators have not received intense reading training. Ridiculous!! Kudos to the schools who have trained their reading department, special ed and general ed teachers in Fundations or a similar approach and balanced literacy. Our teachers needs the best training to reach every learner from our struggling to our most advanced students. RtI is not as successful if teachers do not have a repertoire of strategies and assessments to use for identified areas of growth.

  • Betty Spindler

    I am going on 74 year and was test at age 40 in community collage. The pain of not understanding who you are and that you do have abilities to achieve things you never thought possible are in all of us. I am not a good reader or writer, was told my IQ was between125 to 135 from testing I always felt smart just didn’t know how to show it. Graduated in Fine Arts, from UC Santa Cruz, in 1990,I am in gallery’s and museums. It take us more time to find our place, but when we find it, we have a better understanding of who we are. Ceramic Artist- Betty Spindler

Author

Holly Korbey

Holly Korbey's work on parenting and education has appeared in The New York Times, The Atlantic, Babble, Brain, Child Magazine, and others. She lives in Nashville with her family. Follow her on Twitter: @HKorbey

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