In early February, Parents Education Network presented a lecture, DYSLEXIA: Translating Scientific Progress into Policy and Practice – It’s Time. The speakers were two world experts on reading and dyslexia: Dr. Bennett Shaywitz is a pioneer in the application of functional brain imaging for the study of reading and dyslexia in children and adults. Dr. Sally Shaywitz has devoted her career to helping children and adults with dyslexia; her research provides the basis for understanding the disorder. Together, they originated a widely accepted model of dyslexia that emphasizes the strengths seen in people with dyslexia. In addition, they are the founders of the Yale Center for Dyslexia and Creativity. www.dyslexia.yale.edu
At the outset of their talk they introduced the evening’s theme: the need for national legislative policy to address the issues common to dyslexics. The Shaywitzes are convinced that until there is public policy on the dyslexic condition, dyslexics will be marginalized. Issues that emanate from comments like:
- Tests show my son is dyslexic but the school doesn’t acknowledge it because he falls in the average range – even though the discrepancy is huge.
- I was told my daughter was too bright to be dyslexic.
- My child’s school doesn’t believe in dyslexia.
- I am fighting to have an evaluation for my child.
- Now, as a dyslexic adult, anxiety affects every part of my life.
- I need to take the LSAT test but they won’t let me use my prior evaluation so I
can be given accommodations. I just don’t have the money.
There is good news. Initial steps towards developing public policy have now been taken. The Shaywitzes are part of that momentum. First bit of history. Two decades or more ago the Americans with Disabilities Act was enacted. Congress intended a broad range of people, including those who are dyslexic, to be protected by the law. The Shaywitzes feel that both United States Supreme Court and testing agencies (like the College Board and the National Board of Medical Examiners) have chosen to interpret the ADA in a way other than as Congress intended. In the case of dyslexia, they have interpreted it to only those who are severely limited for coverage by the ADA— a seeming disregard of the spirit and intent of the ADA and scientific evidence pointing to the absolute need for the accommodation of extra time for people who are dyslexic. These situations are what the Shaywitzes and others are now working to correct.
Dr.Sally Shaywitz’s presentation moved to content for this public policy. To begin is the definition of dyslexia. The Shaywitzes have an unusual twist in defining dyslexia. Unusual because it focuses on the positive. To them dyslexia is an unexpected difficulty in reading, unexpected in relation to: intelligence, motivation, educational status and professional work. Why? Because dyslexics are most often very successful in these categories.
Their studies at Yale have shown that there is a relationship to intelligence (IQ) and reading. While they are linked for dyslexics they are not “talking” to one another. Dyslexics can be very bright and at the same time struggling with reading. This fact, they claim, is scientific validation about dyslexia which needs to be disseminated to all phases of the education process in the US. And, I found it interesting to hear that dyslexia is both found in every nationality and it lasts. Dyslexia doesn’t go away. It can be managed but doesn’t completely correct itself. (From a personal point of view, I have found this to be true.)
Most dyslexics have a high IQ. However, they have a neurobiological disruption in the neural systems in the brain which affects their ability for rapid reading. Instead, they suffer the result of extremely slow and effortful reading. This means that their cognitive ability indicates they have the capability to master complex and very difficult conceptual material within a college and graduate or professional school curriculum even though they experience such impaired reading fluency. Interestingly, this is not necessarily the case for an average person with the same reading difficulties.
So, a one sentence definition of dyslexia, according to the Shaywitzes is: dyslexia can be conceptualized as an encapsulated weakness resulting in slow reading surrounded by a sea of strengths. It is the sea of strengths in thinking and reasoning that, together with the accommodation of extra time, allows a slow-reading but good-thinking dyslexic to succeed. The accommodation of extra time on test levels allows the hardworking dyslexic to access his strengths and demonstrate his knowledge.
What do we know about reading and reading ability? The Shaywitzes reminded us that we as human beings evolve to speak, not to read. Every society has a spoken language. We are hard wired to speak, not read. In fact, there are many societies that con’t read. Reading is not natural. It has to be taught. It is acquired. Print has meaning because it represent letters and then words. Letters, lines and circles, have taken on meaning when they link to the spoken language. Writing is a way of reporting language with visible marks. To translate the written words, the word is dissected through the use of a phoneme, a smallest unit of speech. These phonemes become building blocks of language. The challenge for a dyslexic is retrieving the sound. Sometimes a dyslexic may retrieve the sound which is next to the letter in question resulting in he or she saying the wrong word: eg eat, instead of cat. In other words readers have to be able to pull each word apart and then blend the sound. For dyslexics, attaching a letter to a sound is very difficult.
Dr. Ben Shaywitz focused his comments on the neurobiology of dyslexia pointing out that the better the neural system works in the brain, the more fluent the reader. His research proves that dyslexics neural systems differ from skilled readers. Brain imaging (MRI) has made it possible to observe that there is a neurobiological difference between dyslexic and non-impaired readers: not in intelligence, but in the systems that allow readers to read rapidly. This fact reinforces that dyslexia is real. In other words, what has been replicated is the fact that dyslexics have an inefficient functioning of neural systems for skilled and fluent reading. Dr. Ben Shaywitz continued by explaining there are three areas of the brain that are affected. All are found in the left hemisphere of the brain: two in the back brain (responsible for integration, phonology, orthography, semantics etc.) and one in the front brain (executive functioning). These differences hold true for dyslexic individuals from many languages.
Dr. Ben Shaywitz. also mentioned that there are systems in the brain that help compensate when the left brain is not functioning. Even though these other brain tools improves the speed of reading accuracy, comprehension does not improve. The typical reader’s brain develops in the left side of the brain by sounding out the words. This is not the case with dyslexics. They compensate by memorizing. (which, in my case, can mean that I generally do not hold the information for a long period of time.)
Dr. Ben S. summarized his comments by stating that brain imaging has taught us that dyslexia is real and caused by an inefficient functioning of the neural systems. However, he was quick to point out, that, at this point, there is no imaging process to diagnose a dyslexic.
The following is a list of some of the contents that the Shaywitzes feel are important
for inclusion in national public policy.
- a clearly outlined definition of the word dyslexia, along with what it means to a
dyslexic individual, be they a child, adolescent, young adult or adult.
- a reflection of the scientific progress and approaches in the dyslexic condition.
It must include the fact that dyslexia is real, is an unexpected difficulty and
support this statement through the data of the clinical proof.
- the reasons behind the importance of accommodations for dyslexics when taking tests, along with the requirement that this opportunity become mandated through public policy.
Now, I am going to focus on a few comments the Shaywitzes told the gathering about how we, the public can get involved in assisting in the dyslexic public policy process. Recently there has been a bipartisan caucus in the House of Representatives organized to support the public policy on dyslexia. This is spearheaded by Representative Pete Stark (D) from California and Representative Bill Cassidy MD, (R) from Louisiana. If you live in Rep. Pete Stark’s district send him an email through his website http://www.stark.house.gov. Go to contact/public comment supporting the importance of this endeavor. Similarly, if you are from Louisiana and live in Rep. Bill Cassidy’s district, go to http://www.cassidy.house.gov/contactBill.
In addition, Congress is considering the ADA Restoration Act right now. If you want to make a difference, you can help by writing (email) to your Congressional Representative or Senator. Tell them you do care and you very much want to see dyslexia included in the ADA Restoration Act.
There was a great deal of content in the Shaywitz presentation. I strongly recommend a visit to their Yale website. www.dyslexia.yale.edu to learn more. I also used this Site to help me as I was writing this blog to clarify some of the information that we heard at the lecture. In fact, I used some of the language on their site as the articles are very clearly written and most helpful.
If you are interested in more details in the dyslexia public policy effort read the following two articles posted on the Shaywitz website.
Ben Foss, Executive Director of Disability Rights Advocates, was a recent guest lecturer at Parents Education Network in San Francisco. This talk provided some advice for parents who are stymied by the schools systems when they are being an advocate for their child and his or her learning challenges.
Mr. Foss is a dyslexic, a fact that was identified early in elementary school. His parents were his advocates with theresult of him being placed in special education classes. His nonverbal, picture-based intelligence was found to be in the superior range. His greatest difficulty was written language. In middle school he was mainstreamed into regular school classes where he was able to develop his strengths, all the while hiding his dyslexia. Law School pushed him to the breaking point. He could no longer hide the fact that he was dyslexic. Thus began a journey of self- discovery that ultimately led him to become an activist in the field of disability rights.
Mr. Foss recommended five steps parents and their child can take with the school systems.
1. Identify the issues.
It’s important to get a profile of your child. Engage your child and find out where their issues lie. Outline what are the approaches that give your child difficulties. Look for markers. Is the school too demanding for your child? Remember, your responsibility is to support your child, be your child’s advocate. State your goals to solve this issue.
2. Empower the child
1. Check to be sure the child wants to stay in the school. Engage the child on the child’s terms asking them what they want.
2. Sit with your child and teach them why a test is important.
3. Describe to your child how their attitude affects how well they will do in school work.
4. Teach them to stand up and be independent, speaking up for themselves.
5. Explore all forms of technology with your child to see where there is a tool that makes the child independent.
3. Know the law.
Early in your child’s education process find out the requirements for the SAT, the nation’s most widely used college admission exam. While the date of that exam for your child may be ten years away, the documentation that you keep will have a major impact on the conditions under which your child takes this test. The goal is to serve the child while not having to engage the law in the process. While it’s important to have the law the goal is to resolve the issue without having to use the law force. Mr. Foss recommends you consider the law a bodyguard that never does anything but looks menacing. And, remember: document, document, document.
4. Engage the school.
Be an advocate for your child at the school. And, have your child learn how to advocate for themselves at school. Let them show the school administration and teachers that they want to become independent.
As a parent, advocate for the accommodations you feel your child needs. Remember, your child wants to keep up with fellow students. That fact is very important to them. Accommodations can make that possible.
Mr. Foss described his story about creating a device which made him independent. After Stanford Law School he joined Intel and created the Intel reader which takes text and reads it aloud. Now he could access the written word much more easily. Mr. Foss commented that there are many similar products now available. He said some kids resist using this machine because of their concern that they are not learning in the same way as their classmates. The goal is to help them see that they can learn faster with the technology. Sometimes this helps them overcome the embarrassment of using the machine.
5. Fine Tune your approach.
1. Remember: teachers don’t think about your child. Most just want the learning challenged kids to be sent to special education classes. This means the teacher will just have to deal with the “regular” student.
Re-examine your strategy with your child. Make sure it includes discovering how to help them overcome their internal monologue that tells them they are the black sheep. If you ignore this behavior, it will stay with them. Parents must make overcoming this attitude part of your strategy with your child.
2. Know the law.
There are two critical laws that protect students in education.
- Section 504 of the Rehabilitation Act of 1973. This law prohibits discrimination in ANY program that receives federal funding.
- “504 Plan” It’s an individualized assessment and plan. This plan must reasonably accommodate your child’s specific learning disabilities so that his/her needs are met as adequately as the needs of students without disabilities. Examples of reasonable accommodations:
– Extended time
– Preferred seating in the front of the classroom
– Access toassistive technology.
- “IDEA” Individuals with Disabilities Education Act. This Federal law applies
exclusively to education and provides special education to ensure that the tudents benefit from their education. There are stringent requirements: eg:
the student must qualify under a “specific learning disability. Contained in IDEA is the IEP Plan, (individualized education plan) which states the education must meet the needs of each student’s unique learning strategies.
Parents must request assessment for school evaluation in writing.
The IEP meeting is to involve the student, parents, administrators and teachers. The discussion will focus on:
1. Present level of performance
2. Goals and objectives for student
3. Services required to achieve goals
4. Measurements of success
5. Progress reports
Discussion of services (“placement”). There is a strong presumption in the law that students should learn alongside the general education students.
Parents remember: document, document, document. Year after year be sure to have a folder with summaries of all the discussions and other pertinent information. You will need it when the S.A.T. time comes to get accommodations for your child.
Should the above fail, here are some organizations to approach for help:
- Disability Rights Education and Defense Fund: In Northern California 510
644 2555. email@example.com
- National Center for Learning Disabilities: “IDEA” parent guide.
3. Wrights Law: www.wrightslaw.com
4. U.S. Department of Education – Office of Special Education and Rehabilitative
** note: this website, although thorough and accurate, is highly technical
If you have taken or will take standardized tests: LSAT (for legal), GMAT (for medical) , and MCAT (for business), Disability Rights Advocates (DRA) is interested in speaking with you. They ask: Why must dyslexics pay thousands to re-certify on high stakes testing?
Here is a link to “youtube” to learn more:
If this project intrigues we suggest you contact DRA to find out more about their intentions and to help in their efforts to end this discriminatory practice firstname.lastname@example.org or 510 665 8644. www.dralegal.org.