Parents Education Network presented its 4th Annual EdRev (Education Revolution) Event on Saturday, April 21st, 2012 at the San Francisco Giants Ballpark. It is amazing to me that no matter how much rain or fog we get during April, in San Francisco, somehow the sun comes out on EdRev day. A huge crowd, around 1,500 hundred (we await the final count) showed up to learn more about dyslexia and ADD. This blog focuses on the Keynote activities.
Up first was Safe Voices, a student community within PEN that strives to educate, mentor and support students, parents and teachers about the challenges and strengths of Learning Difficulties (LD) and Attention Deficit Disorder(ADHD) Through this program LD students discover that what they perceive as their greatest weakness, in fact, can become their greatest strength. A first step is learning how to speak up for what one needs and who one is.
At the Keynote, Safe Voices students were dotted amongst the crowd in the ballpark adjacent to first base. Each had a soap box and a microphone. Each spoke up for themselves sharing short phrases which have been instrumental in helping them change their attitudes about themselves. Phrases like:
- If you teach me 1,000 times and I don’t get it, who is the slow learner?
- Learning different students think outside the box. If they didn’t, what would the world would be like?
- We own our differences, we accept them.
- I am much more than my learning difference. The only thing that matters is: I am who I am.
- I get up on a box and am heard and am sparking a revolution in education.
- And, so it went.
Jonathan Mooney, a much respected dyslexic who has no trouble in speaking up for himself, took over as moderator. He posed questions to guest speakers, all successful dyslexics, who have found careers that take advantage of their ability to think outside the box. Joining Jonathan were:
Eric McGehearty CEO of Globe Runner SEO, a top-performing, Dallas-based SEO (Search Engine Optimization) and digital marketing firm. In an addition he’s an award-winning artist. Filmmaker Leah H. Bell, produced the documentary Access Denied about the intersection of Eric’s life, art and dyslexia. His told us: Nothing in school worked for me. In Grade One I had a teacher who didn’t get me. She shook me very hard. I was very shy, very scared to interact. In middle school I began being an advocate for myself and my life began to turn around. I had suicidal thoughts until being
connected to people who supported me.
Tracy Johnson, was not diagnosed with dyslexia until college age. Her story is notable a) for the many hurdles she had to overcome, b) for persevering and c) being willing to work harder than most college students do. She was recently featured in the HBO documentary, Journey into Dyslexia, Great Minds Think Differently. In grade school, Johnson was diagnosed as “learning disabled,” a label that stuck through high school and a failed try at community college. The education system broke down for her as the label didn’t identify her LD. Then, her self-esteem plummeted. Tracy realized she was dyslexic when she was cleaning classrooms for a living. Now, she is an enrollment advisor at Eastern University.
Steve Walker is a self-taught dyslexic, engineer and entrepreneur who founded and is now President & CEO of New England Wood Pellet LLC. A true visionary, Steve has been a leader in promotion of renewable energy policy for biomass thermal technologies at the state, national and international level. He, too, is featured in Journey into Dyslexia. Steve told us that if an ally had been around to help him when he went to school he would have been a doctor. Instead, he stared at the clock. When he had to write the letters on the yellow paper with lines he was stumped. In high school he couldn’t read the math questions. Instead he developed low self-esteem. To make matters worse his mother told him if he didn’t go to college he would work in the factory. Well, now, he owns factories and has ended up hiring people who gave him a rough time. Yes, he said, I had a lot of anger.
Each of these speakers and moderator have different backgrounds, but there are common threads in themes and solutions they see and some are outlined below.
- The education system needs to be re-engineered. The system is not serving more than 20% of its population. Dyslexics need to take the lead. We have to look at where does the education system break down? Teachers don’t know how much these 20% really know because their processes can’t give their LD students away to explain. Vocational training and all activities involving creativity needs to re-instated. The Special Ed’s focus of fixing a dyslexic’s shortcomings needs to flip to support what LD students can do best, refocusing on the positives. School must be the time to find out what you are good at. Innovation and creativity go hand in hand. LD students need to learn how to be a leader feeling capable of listening to different points of view. Remember there is no normal.
- Communication. Dyslexics have many different dimensions. Vision is how we see it, not what we see. Learning how to communicate ideas is what a dyslexic’s life wants to be about: communicating the vision, getting my team to go with me. This means dyslexics need to understand concepts to be successful. Communicating a vision is central to success. Dyslexics always want to grow as a person,
- Parents must assume an advocate role to support and care for their LD student. Listen and explore what the child really needs. Go from strength of your LD child. Don’t let the education process drive your decisions. Find a school where your child fits, where they can excel. Leave your ego at the door , which means let go thinking your child has to go to a fancy school. Your concern ought to be: how do I make my kid’s lifetime experience a positive one.
- Dyslexics are often artists, starters, builders, teachers. Finding a way to leverage these talents is the challenge not only for parents and teachers but also dyslexics. A successful artist who has dyslexia and who has a dream to help others may not always be successful as an administrator, which requires a lot of busy work. Dyslexics need to sell their team on what he or she needs. One goal is to get to the point where you have no fear of shouting out from the door: How do I spell this word? Dyslexics need to learn how to back off if someone is trying to make them be someone they aren’t.
- Leveraging growth after school. Taking what seems to be a menial job can open doors. a) Steve was working in a factory. The engineers were all struggling with how to solve a program. One night he had a great idea and stayed up all night solving their problem. That’s when he turned around. He started his own company at 18 – a lawn mower company. Tracy was cleaning school rooms to make a living. She kept thinking, there is something wrong here. I am as smart as some of these students. One night watching the Cosby Show, Tracy learned about dyslexia. The light went on, and she kept going. She re-iterates we need the right, light soil.
In early March, Dr. Michael Pastor PhD, MFT was a guest speaker at PEN. The title of his talk was Family Dynamics in Families with Children with Learning Differences. Dr. Pastor has worked with children, adolescents and families in his psychotherapy practice in San Francisco for over twenty years. In addition, he is currently Upper School Counselor at San Francisco Day School.
At the outset Dr. Pastor said that the goal for a parent with a child who has a learning difference is to ensure that through the child’s young and adolescent years he/she feels loved, accepted, safe and understood. (I, Ann, the blog writer) think probably the latter, being understood, is the biggest challenge. For the child and most often the parents don’t know why the child is struggling. I know this was my parents biggest dilemma when I was a child.)
When a child is struggling Dr. Pastor re-enforced the importance that parents find ways to have fun with their child even though it may not be easy. Why? You want him or her to remember holidays and trips – maybe simply going to the beach. You don’t want your child to simply remember the struggle. He quoted Jane M. Healy, PhD whose book Different Learners as a good source on this topic. Remember: the family we grow up in is the most important environment for a child.
He moved on to some basic considerations for parents:
- If your child is having problems, don’t be one of those parents who just thinks that things will get better on their own. In most cases this is not the truth.
- Parents get shocked at the complexity and expense of the solutions and often decide to let go the step of an evaluation. This is not helping your child. You may find yourself, like other parents have, that you feel relief when learning the results of the tests. Finally there is a way to improve the situation.
- Some parents find it hard to hear the results – that their child has problems. And, now they have more to handle which might include the recommendation of medications, or a tutor, or possibly a psychologist. All of this costs money.
- Some parents feel guilty feeling they should have addressed this issue earlier. They might also sense it’s genetic and feel guilt for having passed it on. Dr. Pastor pointed out that if these feelings are buried and not expressed they will leak out in other ways – anger, fear, even rage.
- Some parents feel a deep sense of disappointment. Their vision of their child being successful in the way they had outlined doesn’t now seem possible. It’s important to admit this feeling so it doesn’t become toxic.
- Parents need to develop a new level of dialogue with each other. If this skill is not in place the service of a therapist may be wise.
- One of the first decisions parents will need to make is who will take the leadership in obtaining for the child what is required. Most often it’s the wife. And, down the road, anger can build up within the wife for carrying this load. And, it’s not uncommon that the dad’s point of view becomes: “If the child only tried harder.”Remember while parents may be disappointed, it is the child who has to deal with the learning challenge. The parents need to find a way to convince the child that they “aren’t lesser than”, especially in context of their peers. One of the new phraseologies “learning differences” can take the heat off the topic and an explanation that some people have different kinds of brains can give the child something to express to both themselves and others. Remember. the conditions of anxiety, depression and low self esteem are more prevalent with children with learning disabilities. Learning challenged kids come to expect that they will fail (That certainly was my expectation with French which being Canadian I had to take through school and university). So, there are both the neurological and psychological issues to handle with the child.
- Parents need to find a way to help the child not decide that life consists only of being forced to do what you don’t want to do.
- If there are siblings, they often find the learning challenged sibling a pain. The sibling deals with it by being a good child but harbors secret resentments.
- And, the learning challenged child will be jealous of the sibling because they seem to have a much easier life. Remember, children are like sponges, they absorb everything. They pick up what parents are believing and how they are behaving. One caution: Dr. Pastor recommends that you don’t tell the sibling not to tell others. That will backfire in ways unexpected.
- When things don’t make sense, parents look for help and discover that the process of identifying professionals is not easy. The person(s) chosen need to fit both the parent’s and the child’s requirements.
- Parents begin to see that they have to choose when to be firm and when to let an issue go. Sometimes letting it go makes sense because, above all else, you want to preserve your relationship with your child. While you are making the decision the parent needs to assess: is this behavior something unusual? If yes, letting go might make sense. The result could be the child might feel: finally my parent gets me. The fall out with siblings in that situation is resentment. The child with the learning difference gets more attention. The core solution in a family is good communication within the family. Each person listens to each other. Then, when a reaction happens it is more easy to talk to the child.
- Remember, Dr. Pastor cautioned, you can only talk to a child at their developmental level. If the child is three and misbehaving, you might say:
“I am going to try to help you stay out of being sent to your room” and then give them an explanation waiting to see what they have to say. Often the child feels better simply because “mummy” listens to me. Another suggestion Dr. Pastor gave was to say to the child: ” I need time to think over what you are asking.” However, the parent needs to respond not too much later or resentment will build up. Whatever decision you take the sibling will think it’s unfair. If this happens, be sure to talk to the sibling about it. And the reason is: the sibling might think your avoidance means there is something really wrong. They will hear “this is so bad it can’t be talked about.” And, it may have some truth for the parents because they are so ashamed which then means that the parents have a challenge of working out this shame between themselves.
In summary, Dr. Pastor feels the behaviors of the learning challenged child and siblings all starts with the parents behaviors. He stated that there are nearly twice as many divorces in families who have children with learning differences. He cautions: The parents are adults and have to adjust to their children. There is no question that raising healthy children is difficult. Some come out of the womb energetic and hyperactive, while others are quiet. It’s a matter of the parents adjusting to whatever is.
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.