I am often asked by people whose lives are not directly affected by dyslexia “Why should I care about dyslexia?” To me, the answer is very clear – we should all care because the impacts of dyslexia on our society are vast. This is my mission statement. My manifesto.
DYSLEXIA FACTS – Many schools and districts refuse to even use the word “Dyslexia.” Why does it matter? If we won’t even say the word, how can we ever possibly hope to address it?
- 1 in 5 of all people worldwide have dyslexia. – Dr. Sally Shaywitz, Yale Center for Dyslexia & Creativity.
- 8.5 Million American students have dyslexia. – Research Excellence and Advancements for Dyslexia Act (READ Act) (H.R. 3033)
- 85% of students with Learning Disabilities have dyslexia.
- Dyslexia runs in families. If a child struggles to read, odds are at least one parent will too.
- Dyslexia is a neurobiological brain difference that affects people’s ability to manipulate language.
- Dyslexia happens in all languages, but some languages, like english, are less transparent than others which is why many english language learners struggle to acquire english.
- Dyslexia never goes away, but people with dyslexia can learn to read if, and often only if, they are taught with Structured Literacy which helps to rewire their brain.
- People with dyslexia do not have any problem understanding language they hear.
- Dyslexia does not only affect reading. It also affects writing, spelling, math and many other areas of life and learning.
- People with dyslexia often suffer low self esteem because they feel stupid, struggle in school and are teased.
- Dyslexia is in no way tied to IQ. Many people have high IQs an are considered twice exceptional which means they have gifted intelligence and have dyslexia.
- Many highly successful people at the top of their fields have dyslexia.
- Our Tennessee schools are currently abysmal at identifying and addressing dyslexia.
HIGH SCHOOL DROP OUT RATES – Our students with dyslexia are struggling in school and are dropping out at astonishing rates. Why? Because we refuse to teach them how to read the way they learn. According to Yale University, 20% of all students have dyslexia and 85% of all students identified with learning disabilities have dyslexia. Despite these numbers, schools in Tennessee do not identify, accommodate or provide interventions for dyslexia except in very rare cases. That means that a huge percentage of students, even those who are identified as having a learning disability, never get the proper accommodations and interventions they need to learn. It is important to remember that the many students not identified as having a learning disability are not included in the statics below and therefore, true numbers are likely much higher. – All the facts below come from “The State of Learning Disabilities.” Third Edition, 2014. Pgs. 16-17. National Center for Learning Disabilities.
- Only 68% of students with Learning Disabilities leave high school with a regular diploma while 19% drop out and 12% receive a certificate of completion.
- Black and Hispanic students with learning disabilities experience much higher rates of school disciplinary actions, higher rates of drop out and lower rates of graduation.
- Students with learning disabilities earn lower grades and experience higher rates of course failure in high school than students without learning disabilities.
- One-third of students with learning disabilities have been held back (retained) in a grade at least once.
- Retention is linked to increased behavior problems that become more pronounced as children reach adolescence and is also known to highly correlate with dropping out of school.
- Dropouts are five times more likely to have repeated a grade than are high school graduates.
- Students who repeat two grades have an almost 100 percent chance of dropping out of school.
- The high rate of grade retention among students with disabilities may be directly related to the unacceptably high drop-out rate of this group.
PRISON – A highly disproportionate number of students with learning disabilities end up in prison because we never teach them to read and they learn early that they cannot succeed in school. The hard truth is that we are more willing to spend money to put illiterate Americans in prison than we are on teaching them to read. Why?
- 85% of youth in juvenile detention facilities have disabilities that make them eligible for special education services, yet only 37% receive these services while in school. – National Council on Disabilities. June 18, 2015. Breaking the School-to- Prison Pipeline For Students with Disabilities.
- 49% of Prisoners do not have a high school diploma. – National Center for Education Statistics, Literacy Behind Prison Walls, October 1994.
- 80% of prison inmates in Texas are functionally illiterate. 48% have dyslexia. – Prevalence of Dyslexia Among Texas Prison Inmates. Moody KC, et al Tex Med 2000.
- In 2010, only 43.9% of 3rd graders scored proficient or above on the TCAP reading assessment. – See more at: https://www.tn.gov/firstlady/article/early-literacy-improvement#sthash.ez54fLK1.dpuf
- It costs a state (on average) $31,286 per year to incarcerate an individual. – Vera Institute of Justice, The Price of Prisons, January 2012.
- The per pupil spending rate in Tennessee was $8,294 in 2012. – Public Education Finances 2012, 2012 Census of Governments.
- It costs $8,500 to educate an at-risk student using an intensive 1:1 program implemented with fidelity by a well trained teacher. Costs are reduces if the intervention is provided in a group of 2-3 students with the same needs. – Decoding Dyslexia Maryland, Dyslexia & Literacy Facts.
SUICIDE – Another upsetting consequence of our unwillingness to help students with dyslexia learn to read is the high suicide rate associated with learning disabled teens. The emotional impact of a lifetime of shame and feeling stupid should not be underestimated. Our failure to teach children with dyslexia to read is oftentimes literally killing them.
- Students with learning disabilities like dyslexia have a three times higher risk of attempting suicide. – Suicidality, School Dropout and Reading Problems Among Adolescents. Journal of Learning Disabilities, vol. 39,6: pp 507-514. First published Nov. 1 2006.
- 89% of suicide notes have dyslexic-type spellings in them. – Learning Disabilities and Adolescent Suicide. Journal of Learning Disabilities, Vol. 30, 6: pp 652-659. Published first Nov. 1, 1997.
MY BIG IDEAS. If we, as a society, truly care about improving social and economic outcomes for all students, then this is what we need to do:
Talk about “Literacy” more than “Reading and Writing.” Sure, we want to kids to learn to read and spell words. But, what we really want is kids who are competent with language, vocabulary, concepts about the world and have the ability to understand and express complex ideas. We must begin to understand that the act of “reading and spelling words” is neurobiogically difficult for 20% of our students. We must accept the fact that the skills-based competencies of reading (print concepts, phonological awareness, phonic and word recognition, word composition, fluency and sentence composition) may be a life-long struggle for a large percentage of our students. We have to learn how to teach around that. We have to learn to expand our definitions of what reading and writing look like for these students. We have to learn to make classroom learning open and welcoming to these students so they have the tools and desire to gain all types of knowledge so that they can become literate and vital parts of our society.
Improve access to Audio books. By the time a student with dyslexia is in the third grade, she will be hundreds of thousands of words-read behind a typically reading peer. Oftentimes, parents of students with dyslexia are not able to read to their children because they, too, have dyslexia and are struggling readers. Audiobooks are an excellent way for students and families to bridge that gap and to be exposed to language, vocabulary and complex sentence structure beyond what they can read on their own. This is called “Ear Reading.” Many studies show that your brain does not care how it “reads.” (See “Listening Isn’t Cheating, How Audio Books Can Help us Learn.” NPS’s Mind-Shift. By Ki Sung, August 18, 2016.) We need to greatly increase our emphasis of ear-reading as a tool for all students and families to access books, especially our pre-readers, families in poverty, english language learners, gifted learners and struggling readers. Ear-reading audio books have many benefits for all students (see ReadingRockets.org “Benefits of Audiobooks for All Readers” by Denise Johnson):
- Introduce students to books above their reading level
- Model good interpretive reading
- Teach critical listening
- Highlight the humor in books
- Introduce new genres that students might not otherwise consider
- Introduce new vocabulary or difficult proper names or locales
- Sidestep unfamiliar dialects or accents, Old English, and old-fashioned literary styles
- Provide a read-aloud model
- Provide a bridge to important topics of discussion for parents and children who can listen together while commuting to sporting events, music lessons, or on vacations
- Recapture “the essence and the delights of hearing stories beautifully told by extraordinarily talented storytellers.”
Additionally, audiobooks give struggling readers the ability to access books independently at home and in the classroom instead of relying on someone else to read to them which is important for self-esteem, especially for older children and teens.
The Nashville Public Library has many free tools for students and families to access books through ear-reading. These include Playaways, OneClickdigital, BookFLIX and Overdrive for Kids. Additionally, for students with learning disabilities, there are free programs offered by Metro Schools which include BookShare and Learning Ally. Lastly, many school text books have accompanying websites that include free read-alouds for all age students. Almost all of these ear reading options can be accessed through common technologies like smartphones, tablets and iPads.
Stock already-existing classroom iPads, tablets and computers with the inexpensive apps that help students with dyslexia. If we accept that 1 in 5 of our students will struggle with basic act of reading and writing words, then we can open our minds to explore the vast world of free and inexpensive assisstive technology available to help them. We have discussed above the technology that can help struggling readers access books, but that is only the tip of the iceberg. Students with dyslexia also often have massive problems with spelling, handwriting, and writing. Even the task of filling out a simple worksheet can be overwhelming. The great news is that there are many fantastic options out there for students and that the Metro Nashville Public School’s special education department knows many of them. These include things like:
- CoWriter (offers spell check, word prediction, speech-to-text and read aloud of written work. Traditional programs are simply not good enough for students with dyslexia who have severe trouble spelling.)
- Easy Spelling Aid (allows students to say a word and the app will instantly spell the word or a student may spell a word they cannot read and the app will instantly say the word out loud. This gives students independence in reading and writing.)
- SnapType (allows students to take a picture of any worksheet and then complete it with speech-to-text or by typing.)
Invest in teaching kids the way dyslexic brains learn. Experts know exactly how to teach the 1 in 5 of our students with dyslexia how to read, our school districts just refuse to do it. I cannot overstate how unwilling our Tennessee schools have been to help students with dyslexia. In fact, our schools only began to even use the word “dyslexia” in October of 2015 when required to do so by a United States Department of Education “Dear Colleague Letter” despite the fact that dyslexia has been a known condition since the1920’s. Today in Tennessee, despite dyslexia legislation in both 2014 and 2016, the vast majority of our schools do not use the word, identify, screen or provide a single intervention or accommodation for students with dyslexia. Our new Dyslexia Advisory Council at the State level is working to change that.
According to the Tennessee Department of Education’s “Understanding Dyslexia: A Guide for Tennessee Parents and Educators” (drafted in January 2016) students with dyslexia need intense intervention, called Orton-Gillingham or Structured Literacy, which is:
- Intensive – given daily or very frequently for a sufficient amount of time;
- Explicit – skills are explained, directly taught, and modeled by the teacher;
- Systematic and cumulative – introduces concepts in a definite, logical sequence; concepts are ordered from simple to more complex;
- Structured – has step-by-step procedures for introducing, reviewing, and practicing concepts;
- Multi-sensory – links listening, speaking, reading, and writing together; involves movement and “hands-on” learning; and
- Language-based – addresses all levels of language, including sounds (phonemes), symbols (graphemes), meaningful word parts (morphemes), word and phrase meanings (semantics), sentences (syntax), longer passages (discourse), and the social uses of language (pragmatics).
Teaching students with dyslexia in this way actually helps to rewire their brain so that they become more efficient readers. It has been proven that these methods are the only way that dyslexic brains can be rewired to learn to read. Teachers must be highly trained to teach Orton-Gillingham or Structured Literacy. This type of intervention must be done one-on-one or in very small groups almost every single day over a course of several years to be effective. However, if you identify students in kindergarten and get them in this intense program early for two or three years, they will be able to successfully read by the end of second grade, which is what we are striving for in Tennessee with our literacy initiatives.
Yes, getting a multitude of teachers highly trained is expensive. It is estimated that it costs about $8500 extra per student to help them to read in 1-to-1 Structured Literacy program with a highly trained teacher. Yes, that is a lot of money when Tennessee only spends $8,294 on the average student to begin with. However, if you look at the cost of paying for a prisoner for one year ($31,286) in Tennessee and the societal cost of students who are high school drop outs, it seems like a bargain and well worth the investment.
If we are serious about wanting to improve literacy and reading in Tennessee, we have to be willing to provide the money and the teachers training to do it. We know how. The only thing holding us back is our willingness to fund it.
Teach general education teachers what dyslexia is and how to teach to it. As discussed above, children with dyslexia do need highly trained Structured Literacy interventionists to give them what they need to learn to read. However, students with dyslexia also need general education teachers who know how to support their reading and writing. We must make sure that all teachers are taught while in their college program:
- How to break down word sounds, what irregular words are, etc. so that classroom teachers can understand how to support the Structured Literacy intervention. (According to the Arkansas Legislature, a recent study of Arkansas teachers found that only 20% of 722 teachers could segment words into speech sounds; only 30% could correctly identify the number of phonemes in half the items and only 60% identified irregular words on a list of 26 words.)
- What dyslexia looks like in students of all ages, backgrounds and IQ levels.
- What inexpensive technology is available to help students thrive in the classroom, as discussed above.
- What easy and free classroom accommodations are available for them to make classrooms welcoming for students with dyslexia. These things include assistive technology, extra time on tests, not counting off for spelling errors, accepting homework and test answers using keywords and not full sentences, incorporating oral or graphic presentations instead of only written work and so many others.
Support Families of Struggling Readers. If we truly care about literacy, we must do a better job supporting families of struggling readers. Many students and families get burnt out with reading very early on. At the start of school, many parents are engaged and push sight words and learn-to-read books that have no hope of working and instead cause shame in children and frustration in parents. Some parents seek answers from schools and teachers, but those “experts” have no idea how to help a child with dyslexia and instead place the blame on the parents if the child is struggling to read. Schools tell parents they should read more with their child. Schools tell parents they should have more books at home. Schools tell parents they should spending time on homework. For parents of unidentified students with dyslexia, these are all absurd solutions and parents figure it out very quickly. This miscommunication breaks down the critical school-home connection and oftentimes families feel they have no option left but to give up and watch their child struggle.
Some of these families with struggling readers do push on to seek answers through the lengthy and stressful special education process, but most are beaten down by an adversarial special education system that does more to tear families apart than to help children read. To get services, families are often left to fight the system which means hiring advocates and lawyers, missing work and spending free time researching their child’s rights. Often, families fail to get help in the system and feel they have no option left but to leave the system to homeschool or try to pay for private school. Many families, even those whose only option is to stay in public school, spend huge amounts of money on private evaluations ($1500) and private tutoring ($85 an hour) because they can get help no where else.
When it is all said and done, parents of struggling readers report significant financial problems from related expenses and lost work time. They also report marital problems from parents disagreeing how how to best help a child in school read and fighting over the associated monetary burden. Furthermore, families of struggling readers report high levels of family stress from homework battles, burdensome tutoring schedules and sibling jealously. Many report feeling totally helpless to help their children.
While all of these factors are stressful to any family, they are unevenly burdensome to lower income families and single parents with tighter budgets and less free time. Oftentimes, these are the very parents who may be struggling readers themselves and may have less ability, time, support and resources to get the help their kids need to learn to read. For those who are familiar with dyslexia, it is easy to see how our system is failing students and families drastically.
What if instead of ignoring and degrading families of struggling readers, what if we helped and supported them? What if we gave families very early access to audio books and gave them information about what dyslexia looks like? What if we screened children in kindergarten and gave them the one to one intervention they need to learn reading? What if we empowered families to be partners in literacy and supplied them with technology and apps to support their child learn to love reading, writing and books? What if this kept more students and families engaged in schools and learning? What if students with dyslexia were taught how their brain works and were empowered to learn their own way and advocate for themselves? What if more kids became literate and graduated from high school and stayed out of prison? What if kids felt better about themselves and didn’t feel like suicide were the best way out?
What if we were serious about teaching all kids to read? If we are serious, lets work together to get Tennessee policy-makers, schools districts, teachers and families to learn to “Say Dyslexia.” It a big job, but we know how to do it.
- Understanding Dyslexia: A Guide for Tennessee Parents and Educators. Tennessee Department of Education, January 2016.
- Tennessee Department of Education’s Dyslexia Advisory Council Page. https://www.tn.gov/education/article/dyslexia-advisory-council
- United States Department of Education, Office of Special Education and Rehabilitation Services “Dear Colleague” letter dated October 23, 2105.
- TED Ed video “What is Dyslexia” by Kelli Sandman-Hurley on YouTube. (4 minutes.)
- The HBO Documentary “The Big Picture: Rethinking Dyslexia” on You Tube.
- The book “The Streets Lied to Me” by Actor, Advocate and Activist Ameer Baraka about how the pain and shame of dyslexia led him to prison. Also see his website for news clips about his powerful story: www.kingbaraka.com.
- The Yale Center for Dyslexia & Creativity website at dyslexia.yale.edu especially the “Dyslexia Bill of Rights” and “How Parents Can Build a Word-Rich Life for Dyslexics” by Kyle Redford.
- The MTSU Dyslexia Center website at http://www.mtsu.edu/dyslexia/. Especially the flyers featured on the “Publications” page.
- The six part series by NPR called “Unlocking Dyslexia” by NPR from November 2016.
- The six part series by MindShift by Holly Korbey. Especially the final installment entitled “The Dialogue Surrounding Dyslexia: Five Important Take aways” dated February 26, 2016.
- Time Magazine’s “Dyslexia is More than a Reading Disorder” by Alice Park dated December 21, 2016 about the newest research by MIT published in the journal Neuron.
- Washington Post’s “Is listening to a book ‘cheating’?” by Valerie Strauss July 31, 2016.
If you are interested in a presentation for your organization, please contact Anna Thorsen at firstname.lastname@example.org. Presentations can be tailored from 20 minutes to 2 hours and can cover one or more of the following topics:
- What is Dyslexia? A look at what dyslexia, what it looks like and why its hard.
- Dyslexia and Classroom Hacks: how to create a dyslexia-friendly classroom.
- Dyslexia and Assistive Technology: what dyslexia is and how technology can help.
- Advocacy and IEPs: tips for parents navigating the special education process.
- Dyslexia and Literacy: why should we care?