Providing scientific information to children with dyslexia.

Abstract

Researchers are making progress understanding the genetic and neurological causes of dyslexia. But with this information comes the challenge of making it practical and useful. One way to do this is to talk to children with dyslexia about what science is telling us about their brains. This paper reveals the difficulties students with dyslexia encounter in school and illustrates how learning about their brains and disabilities can change their perceptions, attitudes, and beliefs about themselves.

Scientific Discoveries and Their Implications

Researchers are making great advances understanding the genetic and neurological causes of dyslexia. Advances in technologies like magnetic resonance imaging (MRI) and functional magnetic resonance imaging (fMRI) allow us to examine human brain anatomy and functioning in vivo as learning and thinking take place (Sherman & Cowen, 2003). Zadina (2002) reports that there could be a variety of neurobiological pathways that lead to dyslexia and Shaywitz (1996) discovered specific neural systems involved in reading and differential patterns of activation in areas that support phonological processing in the brains of individuals with dyslexia. Differences in structure, wiring, and processing mean that a child with dyslexia who came to believe that his brain worked "differently" is probably right (West, 1997).

While not a perfect science because of methodological, definitional, and identification difficulties much good can come from what is known at this early stage. For example, Zadina (2002) proposes that a recursive model where educators, neuroscientists, and medical practitioners work together to identify and provide more specific interventions could reform the education of children with dyslexia. Her recursive model is definitely on the horizon and as scientific advances are made educators must be aware of them, utilize them, and make them known to individuals with dyslexia.

But, with this information comes the challenge of making it practical and useful to the individuals who need it most, children with dyslexia. One way to achieve this goal is to talk to children who are dyslexic about what science is revealing about their brains. With this information children can construct an accurate conception of themselves and their disability. Without it, they may give up on learning and themselves. For example one, eighth grade child said, "Others are born to read but not me. I'm not a good reader. I'm defective and a really lazy boy." This child had received little information about his disability in reading. Now, compare his words to another child's. A child who is in the same grade but attends a school where his teachers talk about dyslexia and the brain,

   Dyslexia is your brain's wired differently and there's brick walls
   for some things and you just have to work either around it or break
   it. I'm dyslexic at reading. That means I need a little bit more
   help. If you have dyslexia the thing you have to find is how to get
   over the hump, the wall. Basically, you either go around it and
   just don't read and get along in life without it or you break down
   the wall.

In these words one can hear what each child thinks about himself and his disability. The first boy has a shallow understanding based on emotional reactions to negative experiences he has encountered in school. In his mind he is defective, lazy, and incapable of learning how to read. He has adopted a self-defeating pattern of thinking. In contrast, the second boy has a better conception of his disability. His beliefs were not always like this but have changed because he is enrolled in a school where his teachers talk to him about his brain and his disability. I propose that talking with his teachers and receiving the latest, scientific information about dyslexia has given him a sense of empowerment and control. The quotes in the section titled Their World are provided to confirm my prediction. Talking to children about their disability or, as Levine (2002) calls it, "demystifying" the mind is important. Listening and conversing with children can provide information about their attitudes, conceptions, and experiences. Lincoln (1995) states that most adults underestimate young people's powers of insight and Cook-Slather (2003) proposes that listening to the educational experiences of high school students could cause major shifts in the way we define learning and learning differences. Langer (1999) also proposes that teachers who embrace adolescents in daily talk and honor their voices affirm their inherent worth and dignity. Additionally, if teachers focus their talk on scientific information about dyslexia, students will gain a better understanding of their individual differences.

To reveal the importance of talking to children with dyslexia about their disability I present information from a study conducted at a private school for students with learning differences located in the Southwestern United States. The goal of this study was to learn about the difficulties students with dyslexia encounter in school and discover if talking to them about their brains and disabilities changed their perceptions about themselves. While issues of proper identification and labeling remains controversial I believe that the students identified as dyslexic in this study have been evaluated with the best methods available at this time. The school where this study took place conducts a complete academic, psychological, and speech and language evaluation on each child prior to admission and placement. The school embraces the definition of dyslexia presented by the International Dyslexia Association and their labeling practices align with this definition. In addition, the staff also use Dr. Mel Levine's (2002) neurodevelopmental constructs to make more refined diagnosis and develop goals and objectives on each child's individual educational plan (I. E. P.). I recognize that debates continue over a true and pure definition of dyslexia but believe that this population of students, while not perfectly defined, is well defined and identified based on current best practices in evaluation and diagnosis.

Methodology

The students, their teachers, and I conversed over a ten-month period and data came from three sources: interviews, field notes, and journal entries. I remained at the school collecting data until saturation was achieved and no new data or patterns were appearing.

The School The private school was chosen because of their thorough evaluation requirements and because the teachers and administrators at the school are well versed in the latest scientific methods to teach reading (e.g., Orton Gillingham, Alphabetic Phonics) as proposed by Shaywitz (2003). The teachers and principal belong to organizations like the International Dyslexia Association and often attend conferences and workshops. Additionally, many of them have participated in the Schools Attuned program developed by Dr. Mel Levine and his colleagues. This program is designed to educate teachers about childhood neurodevelopmental functioning and variation. As part of their training the staff receive support, training, tools, and consultative services to create a school environment designed to address individual learning needs. In addition to this training, several teachers also use Levine, Schwartz, and Wakley's (1995) The Mind That's Mine curriculum designed to teach students in upper elementary school about their minds, thinking and learning. The teachers utilize this curriculum because they are committed to providing students with appropriate instruction, necessary services, and scientific information They believe this is important to the students' self-concept and academic success. For example, Ms. Simon said, "I think that this brain research that's out now that shows the dyslexic brain is actually a different brain, I think that's incredibly helpful. Because they (the students) are able to see that they can learn to read but not like everybody else because it's a different brain and I think that's a big help." Ms. Fisher believes, "I think it (information) will just be helpful to their overall feelings about themselves and if they learn how their brains function they can learn techniques to adapt to it."

The Students In sum, sixteen children, grades 5 through 9, were interviewed. All of the students were Caucasian and came from middle-class families who spoke English. This socioeconomic and ethnic composition was the general population of the school. Additionally, fifteen of the students were male and one was female. My sample was mostly male because the majority of children identified as dyslexic at this school were male. This uneven ratio of males to females is typical in education today even though there is probably no gender difference in the population as a whole (Lyon, 1996). I can only speculate that the overrepresentation of males in my sample reflects the typical situation found in schools today. The ratio of boys identified to be reading disabled compared to girls is four to one (D'Arcangelo, 1999). In general, more boys are identified because they tend to act out in the classroom and more males have come to enroll at the private school as an alternative. However, I recognize that debates continue over labeling and defining students with dyslexia but the fact that all of the students (male and female) had encountered difficulties in a mainstream school and were given a thorough evaluation upon admittance gives additional credence that this population of students is well defined and identified. Each child was identified as having developmental dyslexia because their reading levels ranged from two to four grade levels below current grade placement. Each child has an individualized educational plans (I.E.P.) and reading was the major focus of each plan. According to the principal and teachers reading is the primary hindrance to each child's success in school.

The Teachers and Principal Six teachers and the school principal were also interviewed to provide insight, confirm findings, and give credibility to the students' words. Two teachers were academic therapists and four were homeroom teachers. All adults interviewed have daily contact with the children. Pseudonyms are used for both students and teachers.

Data Collection Methods A separate list of questions was developed for students and teachers and the complete list can be found at http://www.west.asu.edu/dzambo. Each participant was interviewed in one-on-one and sessions and audio-tape recorded. Each session lasted from ten to twenty minutes. In addition to the interviews I also wrote extensive field notes and journal entries. Field notes contained observations and were intended to be descriptive rather than summative. Journal entries were written both during and after interview sessions to ensure credibility, highlight issues of concern, and provide a forum for reflection.

Data Analysis and Confirmation A constant comparative method as describe by Strauss and Corbin (1998) guided my analysis of the data through three phases of interpretation. Phase 1 occurred as the data were collected and entailed reading field notes and journal entries each day to discover and refine technical issues and confirm initial interpretations. Phase 2 began when interviews were transcribed. During this phase I checked the accuracy of transcriptions and examined the transcripts for meaning and applied a coding system to look for relationships and patterns. With relations identified Phase 3 began and overarching themes and theory were developed (Shank, 2002). Once analysis of the transcripts, field notes, and journal entries was complete the teachers, school administrator, and university peers were used to confirm deductions and conclusions. Triangulation of data sources and member checks led me to conclude that my theories were supported by multiple sources. The interview transcripts, field notes, and journal entries all pointed to the same themes, categories, and conclusions and could be confirmed by others. I present information gathered from my data to allow you enter the world of these individuals. Listen to the words of the teachers because in them you will hear how they are talking to the students about what science is revealing about dyslexia. Also, listen carefully to the words of the students because in them you will hear how much they are benefiting from this information.

Their World

Before enrolling at the private school each child experienced difficulty in the mainstream setting because of his reading ability. This conclusion was drawn from the words of adults who know the children. For example, the school principal said,

   Their reading was a huge issue for them and it was so tied into
   their self-esteem. They felt badly because they couldn't read. When
   they come for an interview (a school entry requirement) they always
   tell me reading is my hardest thing. I think reading is usually the
   number one issue for all the students whether they want to discuss
   it or admit it or not. I think that that is the area that holds
   them back.

Likewise, a teacher added, "Well, I think he (Cory) thought he was stupid because he couldn't read and that wasn't an accurate view. This idea came from the put-downs by the kids because he couldn't read and the put-downs by his teachers because he couldn't read and just put-downs by himself. He put himself down and that was affecting his self-esteelIL He began to believe that he couldn't keep up and this got him into arguments more so than believing he had a reading problem and needed to work to overcome it." Another teacher noted, "He hated it (school). He said the kids teased him. He wouldn't get out of the car to go to school. No, he's had a very tragic background." Additionally, Ms. Avi spoke about the scars left by past experiences.

   "When he first went into Mr. X's class Mr. X said, 'I want you to
   read this to the kids' and Jordan told him, 'no, I don't read.
   I don't read in front of people,' and that's four or five years
   later. He does read for X now but his initial reaction for a long,
   long time will be I don't do that. Those scars last forever."

The students were hurt and difficulties arose because they felt different. This theme was drawn from their teachers' words and the words of the students. For example, Cory said, "I'm not a good reader. I'm behind all the other kids and they think I'm stupid. They tease you and are real jerks. So, I want to prove myself ... like get up to the level of certain people. Show them that I'm just as good." Another boy said, "Some think that we're slackers who don't want to read but we just can't. If you are dyslexic it's just no fun to read." Additionally, Jordan noted,

   Yeah, I think at first my parents believed what the teachers were
   saying. That he's lazy. He doesn't really want to try and they'd
   say you need to put a little bit of effort into it and at least
   try. I'm like, 'I am.' but after a while of them saying, 'try' and
   the teachers going, 'you're lazy' it's kind of, 'OK, I'm lazy, too
   bad,' and it was a downhill road from there.

Defiance became one way some students coped with their experience. But defiance was just a cover up to hide the hurt they felt inside. For example, Jordan said

   Well, at my past school they used to hand us all the homework on
   Mondays and you turn it in on Fridays. They handed me a stack about
   an inch and a half and as we were walking out of class there was a
   big trash can right there and I'd, in front of everybody including
   the teachers, just drop it in the trash can and walk out. I did
   this because I couldn't read and I was in the third grade. I was
   popular so it was kind of a point that I wanted to get the teachers
   to realize. That while I'm doing it, inside it kind of like hurt
   when the teacher would hand it to me. It was like I really want to
   do it but I can't and then just so it didn't look like I was goin'
   soft or anything like that I'd walk over to the trash can and throw
   it in.

Likewise, another child added,

   They (people at his old school) didn't know what any of this
   dyslexia was and the final breaking point was when one of the kids
   walked over and decided to say something about it to me. Boy, you
   must be stupid you're doing this on purpose and well things went
   badly right there ... because I turned around and punched him. I
   was very upset. It was in front of a lot of my friends and I took
   it out on him that day.

Finally this boy sums up his pain. "I always get my guard up when I'm reading cuz I'm not good at reading, so if other people are next to me I keep my guard up. Dyslexics have this big old shield like, 'you can't hurt me any more'." Some students became defiant while others became stressed and withdrawn. For example, Jackson said, "When it came reading time I would do everything under the sun to get out of it because reading was my worst nightmare." Pat also spoke of his experience, "Yeah, you've been there. You were on that chair too trying to read and you're standing there trying to get it out of your brain going a-n-d. So you know, you've gone through that exact same thing." A teacher confirmed these words when she said, "When he was little, he would chew on his shirt like this (pulls up the collar of her shirt) and do anything to hide because he couldn't read anything and it was tough on him." The students' views are changing because they are being educated about dyslexia and their brains. This information is helpful to their overall feelings about themselves. One teacher said, "I think talking about dyslexia makes them better advocates for themselves and I also think it helps them understand their disability better." Another added,

   We talk about dyslexia all the time. I just tell him the definition
   and what it's about and how his brain is different. That means it's
   wired differently than the non-dyslexic brain ... He'll always need
   some accommodations and some interventions and it's important he
   understand all that. So, we talk about it all the time. It really
   is a long-term process.

Because the teachers explain and discuss dyslexia the students are developing a more realistic conception of their brain and their disability. Said one boy,

   From what I know of it is that it's not like a disease or anything
   like that. It is passed down through the generations. It's in the
   genes. I mean it's all, you're dyslexic or you're not. It's just
   it's there. There's many different kinds of dyslexia, like you can
   flip things around, you can have trouble putting things together,
   sometimes the letters are dancing on the page, you can read things
   backwards. Now they're taking a lot of people who have died and
   they get permission to do autopsies on their brains. I guess
   they're like frozen brains and they cut them.

Others spoke of brain regions and neurons. For example, Pat said, "The neurons are not all in one part they're more towards the surface of your brain. They're not like wired right." Mackenzie added, "Yeah, neurons but in the dyslexic brain they have fewer connections and sometimes they are connected to the wrong ones and so practicing helps but not having that disability also helps. You need more practice." Jordan added,

   It's actually like a stream of things that have to be connected.
   It's brain regions like math and science in the brain but they're
   supposed to be in like a little loop. In a dyslexic's brains a
   couple of the pieces kind of skim the raft and they're out like up
   here or here. What your brain has to do is have a school like this
   one. It helps you get a rescue line up to them and connect them. If
   you connect everything it works just the same. It may not be the
   same but it works.

Finally, the words of this boy gives insight into how this information has helped him realize his difficulties are just differences. In his words, "I don't really know why, but actually I think it's kind of like a snowflake. All dyslexic kids read differently or have like a different advantage and disadvantage. So each snowflake would be different but similar but not the same." In sum, these students understand what it is like to feel different because of their reading ability. For some, feeling different led to defiance but defiance was just a way to cover the hurt they felt inside. Others became stressed and withdrawn and lost their sense of self-worth and their self-esteem. However, now that the students are being given scientific information about their disability they are better able to cope with their disability and are in the process of rebuilding their sense of self-worth. Even though they know the sorrow of a reading disability they are coming to understand and accept the difference and uniqueness of their minds. They are beginning to change their perceptions, attitudes, and beliefs about themselves.

Conclusions and Recommendations

From the students' words one can hear how much they know about dyslexia and their brain. It is doubtful they would have talked about neurons, genetics, or brain regions if their teachers did not talk to them about these facts. The students' willingness to discuss what they know and the depth of their knowledge reveals that this information is having a positive effect on their self-concept and individual differences.

Researchers are making great strides understanding the genetic and neurological causes of dyslexia. While not a perfect science yet, much good can come from what is known at this stage. Educators can take this information and convey it to their students by talking to them. Talking to children about their brain and disability should begin early (as soon as identification is made) and continue throughout their entire school career and into adulthood. When teachers talk to children about their disability they need to provide the best scientific information currently available in easy understandable language at the child's level. Programs to help teachers understand each child's unique mind like the Schools Attuned program and curriculums like The Mind That's Mine would be good places to start. Likewise, reading books like Overcoming Dyslexia, joining organizations like the International Dyslexia Association, and being aware of validity issues raised by researchers like Zadina (2002) can help teachers better identify, understand, and teach students about dyslexia. Changing a child's perception of himself, especially if it is well established and formed from negative experiences, will take time, patience, and persistence. Negative ways of thinking need to be challenged with sound scientific evidence that shows how brains with dyslexia have individual strengths and weaknesses just like any other brain. Making children aware of their strengths and helping them focus on them is a good place to begin.

References

Cook-Slather, A. C. (2003). Listening to students about learning differences. Teaching Exceptional Children, 35(4), 22-26.

D'Arcangelo, M. (1999). Learning about learning to read: A conversation with Sally Shaywitz. Educational Leadership. 57(2), 26-31.

Langer, J. A. (1999). Excellence in English in middle and high school: How teachers' professional lives support student achievement. American Educational Research Journal, 37, 397-439.

Lincoln, Y. (1995). In search of students' voices, Theory Into Practice, 34, 88-93.

Levine, M. (2002). A mind at a time. New York: Simon and Schuster.

Levine, M., Schwartz, C. W. & Wakley, M. B. (1995). The mind that's mine. Cambridge, MA: Educators Publishing Company.

Shank, G. D. (2002). Qualitative research a personal skills approach. Upper Saddle River, NJ: Merrill Prentice Hall.

Shaywitz, S. (2003). Overcoming dyslexia. New York: Alfred A. Knopf.

Sherman, G. F. & Cowen, C. D. (2003). Neuroanatomy of dyslexia through the lens of cerebrodiversity: The value of different thinkers in our mists. Perspectives, 29(2), 9-13.

Strauss, A. & Corbin, J. (1998). Basics of qualitative research. Thousand Oaks, CA: Sage Publishing.

West, T. G. (1997). In the mind's eye: Visual thinkers, gifted people with dyslexia and other learning difficulties, computer images and the irony of creativity. Amherst, NY: Prometheus Books.

Zadina, J. (2000). Structural neuroimagining studies of dyslexia. Paper presented at the Annual meeting of the American Educational Researchers Association. New Orleans, LA.

Debby Zambo, Arizona State University West

Zambo is a lecturer in the College of Education where she teaches courses in educational psychology and child development. Her research interests include the thinking processes of students with special needs and the emotional impact of having a disability.