Drs. Ben and Sally Shaywitz at Parents Education Network

 

In early February 2012, 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:

  1. 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.
  2. I was told my daughter was too bright to be dyslexic.
  3. My child’s school doesn’t believe in dyslexia.
  4. I am fighting to have an evaluation for my child.
  5. Now, as a dyslexic adult, anxiety affects every part of my life.
  6. 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.

http://dyslexia.yale.edu/Policy_QA.html

http://dyslexia.yale.edu/Policy_ADA.html

DRA, an advocate organization for dyslexics, focuses on standardized tests

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:

  1. Disability Rights Education and Defense Fund:   In Northern California 510
    644 2555.  iephelp@dredf.org
  2. National Center for Learning Disabilities:  “IDEA” parent guide.

http://www.ncld.org/publications-a-more/parent-advocacy-guides/idea-parent-guide

3.   Wrights Law:    www.wrightslaw.com

4.  U.S. Department of Education – Office of Special Education and Rehabilitative
Services.  http://idea.ed.gov

**  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:

http://www.youtube.com/watch?v=acV_CwhOOVk

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 eleonard@dralegalc.org or  510 665 8644.   www.dralegal.org.

Dsylexic students give advice on getting into college

In early January, 2011, Parents Education Network (PEN) held their annual workshop featuring five PEN students with learning challenges who have been successful in gaining acceptance to different colleges and universities throughout the US. All of them have one or more learning challenges including dyslexia, ADD and audio processing.  The event was chaired by Eli Kersh-Oliva, program director for PEN which includes coordination of the SAFE Program*.  He posed questions and the following summarizes some of panel experiences.

Which colleges/universities are you attending?

  • University of Southern California
  • Mills College
  • Walla Walla
  • University of Iowa
  • Community College

When did you decide you wanted to go to college?

  • In  Grade V11
  • In Junior year in high school
  • When I was a little kid
  • When I knew what I wanted to study: fashion
  • After a gap year

Things they considered when choosing a college.

  • wanted a small school because I needed one to one attention.  And, wanted a well rounded
    liberal arts education.
  • applied everywhere, was good advocate for myself, looked to see what fit me best, looked for a person who would invest time with me.
  • looked for a small college and structured LD (learning difference) programs.
  • took a gap year after high school and then chose a community college.  I am not sure where I want to focus my education and need good learning support.
  • I have a passion, fashion, and that propelled me to be interested in college.

When did you disclose you had a learning difference?

  • Wrote about it in my application and then weeded out schools who weren’t interested.
    Checked out LD resources and asked what accommodations they offer. During the application process I was worried about losing my parents support at home as I have to have everything read to me. I also use Kurtzweil, a speech reader software. I chose Whitman where the Dean told all my professors about my learning challenge.
  • I wasn’t afraid of disclosing my learning difference.   If they aren’t willing to both help me and give me accommodations then I knew it was not the right school for me.
  • I went to a small school before Mills to gain confidence that I could be an advocate for myself.  Then, I was ready to apply to Mills.
  • At a community college you don’t have to jump through hoops for LD support.  I also use
    the Intel Reader.
  • I mentioned my learning difference in my application.  At Iowa State they are very helpful and take the extra step to be sure I am successful.

What special technology do you use and/or how did you build community at school?

  • I use Kurtzweil, they gave me double time for an exam which I take in another room and am given a calculator.
  • I have available through the college an I-Pod, Kindle, Intel Reader and Pens that record what is being taught.
  • At college we created community:  Learning Styles Coalition.  We are involved in Project Eye to Eye, a national program developing a coalition of mentoring programs for students labeled with learning disabilities. Now, fifteen of us are mentoring in the Walla Walla Schools.
  • I am in a large university (USC) and they have an extensive learning department.  Every class has a note taker and their notes are put on-line. We have a silent commons where kids who have learning disabilities can go twenty-four hours a day. Right next to it is the Writing Center where there are TA (technical assistants) in many fields to help us.  I get help with grammar from them.
  • In my college there is no assistive technology so I work with TA’s and professors and have
    extended time for exams.
  • At Mills there is a large population with learning disabilities.  I feel very comfortable talking about my issues.
  • At my community college there is very little LD community.  My friends who are LD and ADHD are my friends and we help each other.
  • I get extra time and I take classes (like sewing) to balance the academic work.   There  isn’t much community, except with my friends.

What are the differences between high school and college?

  • Time management is a big issue.  In school we were in class from 8:15 to 4 pm.  In college we may have only two classes a day.  I had to find a place where I could study.  And, I really learned to be a self advocate.  My Mum did most of that in high school.
  • At the beginning of each semester I offer to take my professors to coffee and tell them about my learning difference and what I need.
  • In high school I had close relationships with my teachers.  In college if you fail he won’t be there for you.  It’s up to you in college.  It’s very important to get the teacher in line with you.  Make sure they know your name and that you are trying.
  • In high school there was very little curriculum choice whereas in college you choose what you want to study. It’s very important to be passionate about what you choose to learn.
  • In college you have to take the entire experience in your hands.
  • Parents absence is a big change.  Those struggles makes you stronger, a better advocate for yourself.  A planner is essential.  Write it all down.
  • In college you are a face in the crowd.  To achieve you need to know the things you are good at and vice versa.  College can be a big change.
  • I learned you have to go to office hours and talk about the test with the professors. You can raise your grade by keeping in close contact with your professor.  And, be sure to get a reader if you need one.
  • Communicating in college with your class mates is very important.
  • Find people who study like you do.

Think back to your freshman year, what stands out as most important?

  • Self Advocacy is most important.  Parents, ask yourself, have you prepared your
    child to be a self advocate?
  • Take a light load in the 1st semester.  It’s a lot just to start college.
  • Make sure the professor cares about you.

What did your family do for you when you were in school?

  • I started to do panels in grade 7.
  • I did role playing with others to learn how to be a self advocate.
  • My parents called a teacher to tell them that I was coming to ask for something and asked that they give me space and listen to my request.
  • I learned to advocate for myself.
  • I was the black sheep of the family.  I never took my parents seriously.  I learned by being in a LD community.   Safe Voices, a project of PEN, taught me how to advocate.

Summary Comments:

  • Self advocacy is the key.
  • Check out who is the person in each class who sits in the front row.  They are generally a “know it all”. Get into their study group.  I don’t always disclose about my learning challenge at the outset with those groups. If there is a creative aspect I ask to do that.
  • Professors can be creepy.  They have brains but mostly no facial expressions. So get to know them.  If they deny you what you need, go to the administration and ask for intervention. Before you go, send the professor an e-mail with the request.  Once you have the denial written down, take it to the administration and ask for intervention. That ends that. Remember it’s your right to have accommodations.
  • Parents: let your kids make mistakes.
  • Students: have a good time at college, don ‘t study all the time.  Don’t let parents affect your thinking so that you lose your perspective.  Make friends with those who have similar study patterns.
  • In high school I was lost and only thought about girls.  In college I found my passion. Don’t worry about motivation, find the passion.
  • Gap year is a good way to become re-invigorated.

*SAFE (Student Advisors for Education) is a student community that strives to educate, mentor,
and support students, parents and teachers regarding the challenges and strengths of LD and ADHD students.  This unique group of teens is passionate about learning differently, pursuing
their fullest potential and spreading awareness of their capacity for academic and life success.

This blog is written by Ann Farris, a dyslexic/hyperlexic.