|
| Nancy Hennessy - Dyslexia is Personal - Think About What it Must Be Like |
|
|
| Nancy Hennessy - Dyslexia is Personal - Think About What it Must Be Like |
|
The following transcript has not been edited for journal or magazine publication (see 'Interview Notes' for more details). Bold is used to emphasize our [Children of the Code] sense of the importance of what is being said and does not necessarily reflect gestures or tones of emphasis that occurred during the interview.
|
David Boulton: Thank you for agreeing to this interview .
Nancy Hennessy: You're welcome. I'm pleased to have the opportunity to talk with you about something that I care so much about.
David Boulton: We’d like to start with a history of you. Let’s start with a sketch on yourself that you feel would help us understand how it is that you've learned your way into your work.
Nancy Hennessy: I began teaching a number of years ago. I came into teaching via the regular education classroom. I spent some years in that setting and kept thinking about students that I was interacting with who weren't successful and what other route I might take that would allow me to meet their needs. I made a decision to go back to school to study the area of learning disabilities, special education. At the same time I began to look for an opportunity to work in the special education classroom and ultimately, ended up in a middle school with adolescent boys. Interestingly enough, at that particular point in time, even though I had a graduate degree in learning disabilities, I'd been certified not only to teach, but as a diagnostician, I encountered young men, adolescents, “ tweenagers” as we sometimes call them, who couldn't read and I didn't have a clue how to teach them.
I've often described my language arts class as a “behavior management class.” I remember trying to get through A Tale of Two Cities with the three guys in my group. I was using a text that was at a lower readability level, and when I think about it, that really wasn’t fair to them because I wasn't giving them access to appropriate vocabulary and background knowledge, and so on. I was greatly disappointed that I wasn't able to work with them in a confident way and that really made me think about where I might find some answers to working with children who weren't learning how to read. I had in memory some other children as well that I hadn't reached in the general education class. I always thought that was the special educator's responsibility and I didn't really need to worry so much about them.
So, I began to look for conferences and workshops that were being offered in the area and that's how I connected with the then Orton Dyslexia Society, now the International Dyslexia Association (IDA). I felt as if I'd finally found a group of professionals who had a sense of how to reach these children. I became involved in the New Jersey Branch, ultimately becoming the branch president. I also pursued study at Fairleigh Dickinson University in multi-sensory structured language where I later taught and continue to teach occasionally. It is through these early connections that I initially came to know both the researchers and practitioners who have the answers to all these questions we have about dyslexia.
In the interim, as I pursued this issue, I began to realize I had dyslexia in my own family. This prompted me to further commit and become even more involved with the International Dyslexia Association. I have a brother who is dyslexic. My brother is about five years younger than I am and all through school he had difficulty. I was the older sister assigned to do homework with him and that was a dismal failure. Even then, I thought I wanted to be a teacher, so this was a disappointment. We began to think of my brother as being lazy or not very capable, although he is a very capable individual. It really wasn't until I became involved with the Orton Dyslexia Society, now IDA, that we realized that Christopher, in fact, is dyslexic. We certainly have dyslexia in our family and one of Christopher's sons is dyslexic as well.
So, it's been a very interesting journey for me. It's been a professional journey, in terms of wanting to be successful. All teachers want to be successful with their students and their competency is directly connected to their self-confidence. How they feel about themselves as educators is connected to whether or not students do well in the classroom. But it's also been a personal journey. I really feel that dyslexia is very personal. And it's not just personal for the individual who has dyslexia. It is for the parents, family, and educators as well. So, that’s how I arrived at being the President of the International Dyslexia Association.
David Boulton: Great story. I like the mix of heartful, first-person learning experiences. One of the things that we look for in talking with people is this difference between learning by accumulated inference and first-person, inside-out, motivated learning. That kind of learning makes such a difference.
|
Nancy Hennessy: When I work with teachers, I always ask them to bring the child into the room. I don't think we can think about the teaching-learning environment without first thinking about the individual that we're working with or attempting to serve. It’s really about the personal or individual’s story. That's where the motivation needs to come from to continue to think through what we know, what else we need to learn, and also, how to work with the issue of resistance to change. We're not able to change unless we have a reason for changing. I think the reason, again, comes back to the individual. So, bring the child into the room and think through why it is that you're doing something.
I also am very fond of telling educators that I work with and train that I'm very impressed that they all want to learn. I'm very impressed that their brains are going to grow, but the reality is that doesn't really make a great deal of difference unless that translates into student learning at the individual level.
David Boulton: Right. It seems that the teachers need to be equipped with this knowledge, but it's not a substitute for them learning their way into making contact and differentiating their knowledge in relation to what the actual individual person needs.
Nancy Hennessy: Right. I think as we think about classrooms... classrooms are very challenging for teachers. When you spend time in school and you look at all of the demands that are placed upon educators, not just in the area of special education, but also in general education today, it's understandable why they feel overwhelmed and are sometimes resistant to changing. And yet, if we were able to just back up and talk about our beliefs about teaching and learning, I really don't know any educator who wouldn't say that they have a firm commitment to educating every child. But with that belief system, with that commitment, comes a willingness to be open, all of the time, to the array of solutions that are available to us.
Again, it is personal. It comes back to the child, the individual, who has special needs or learning differences or who just needs a different environment within a classroom. It’s all about being prepared to meet the needs of those children that walk through the door. As I said earlier, I've worked in many different capacities across the grade levels. I've been a classroom teacher, a diagnostician and an administrator. So, I have different perspectives. And yet, what continues to ground me are memories from working in a kindergarten through second grade school at one point in my career. I remember the first day of school vividly. I never, ever forget this; those little bunnies, those little boys and girls, getting off the bus, and they're so filled with joy, filled with enthusiasm as they walk through the doors. The principal of that particular school was an inspiring leader and she videoed each child as they walked through the door and then, she would show that to parents at Back-to-School Night. She knew the name of every single child that was in that school. There was a caring about how each of those children progressed and that's what we really need to be about in education. We need to be about the fact that children come to school filled with joy and enthusiasm for learning and we have to keep that fire going.
I also worked in a high school setting, and that was a wonderful experience as well. The principal, in one of the schools in the district, was also an inspiring leader. There were approximately a thousand students in his school and he knew the name of every student in the school. So, all of this speaks to where do you get your energy from? What drives you when you work in school? It has to be the children that are in the school and a desire to meet their needs.
David Boulton: Well said. I'm sure you noticed in high school that the level of enthusiasm for learning was somewhat different than it was for the little ones coming to kindergarten.
|
Nancy Hennessy: Yes, hence the importance of intervening early on with children, particularly for those children who have struggled with reading or who have dyslexia. I've certainly seen the difference.
I can't talk to you about this without seeing images of children. Immediately, what comes to mind is this little kindergartener, Ben, who is probably about twenty-five years old now. When he was in kindergarten, he was an at-risk child, in terms of reading. As he made his way through kindergarten Ben wasn't acquiring sounds and the names of the letters. At his school, we were fortunate to have in place what would now be called a research-based reading program and it was available in the general education classroom. And so, as Ben moved into first grade, we placed him in that reading program. I vividly remember sitting at the reading table about two or three months into the school year. The teacher was working with sounds and letters, actually with sound cards, which have letters represented on them. The children were asked to attach sound to letters and then to blend sound together. And as Ben finally did that, he said, "Oh, I get it. Sounds make words." Ben was on his way, right? He had been reached early on.
Then, I remember another child, Scott. I worked in a school district kindergarten through eighth grade that then sent their students to a regional high school district where I eventually worked. So I saw some of these children when they were little and then, I saw them, including Scott, when they were older. Scott's reading needs had not been attended to and now he arrives in high school and he's still not a proficient reader. Yet he's a very capable young man. He's very talented, very athletic, bright, and inquisitive; he could capture thoughts through oral conversation in class, but he was still not reading. While Scott may have appeared to be well adjusted, if you really knew Scott, you knew the pain that he was still feeling because he had not yet learned how to read.
I know quite a few of dyslexics, successful and not, and regardless of where they are in life, when they speak to you about school and what it's like to be dyslexic, they can't hide the pain in their voice. And so, the difference between intervening early on with youngsters or waiting until later is critical. And at the same time, I would not want anyone to feel that we can't intervene later on. We can, and in this particular high school setting where I worked, we had a program for young men and women who had not learned how to read. We put in place a multi-sensory structured language program. We had options. So, while those students participated in academically challenging classes and many of them went on to a post-secondary setting, we were still attending to teaching them how to read. This certainly takes longer and there's certainly more barriers. These students don't have the same belief in themselves that they had earlier on. They've begun to doubt their capabilities. As you work with them in an appropriate program, as you allocate resources, and administratively we did that, you see a new person emerge. Yet, they still carry with them some of this pain because they weren't like all those other little boys and girls who came to school and experienced the magic of reading which they should experience by the end of first grade.
My sister, who teaches first and second grade, loves the spring of the year because she says magic happens in the spring of the year. These little ones go home not knowing how to read, still "barking at the print," as Jeanne Chall would say, and they come back the next day and all of a sudden, they're reading! So magic happens. We need to make magic happen much earlier for these children. We can't forget the adolescents and the adults, but we need to make it happen much earlier for them.
David Boulton: This dovetails nicely with the work of neuroscientists and other researchers, like Jack Shonkoff, who are studying critical and sensitive windows in early childhood development. There's no question that neuroplasticity studies show us that we can remediate just about anything.
Nancy Hennessy: Right.
David Boulton: But the neurological and pedagogical efficiencies, the systemic costs, and the shame aversion that develops, all are working against us the further behind we get.
Nancy Hennessy: Right.
David Boulton: Nobody is a lost cause. We never want to paint that picture. But it's really vital that we meet children earlier in the developmental sequence.
Nancy Hennessy: It’s so vital from a number of points of view. Certainly from the perspective of how children feel about themselves. Erik Erikson said "I am what I can make work." And by age four or five, kids have a good sense of what they can make work. So, it's vital from that point of view. It's also critical that children have access to curriculum that they're cognitively capable of. I think that any of us who have worked with adolescents have seen, over and over again, the effects of not having access to print. So these young men and women come to the middle school or a high school setting and they don't have the vocabulary, they don't have the background knowledge, they haven't built the schema that really allows them to interact in an appropriate way with the content area information. If, in fact, they had that access to print, this would have been facilitated for them. This is not about their cognitive competence. It's about the fact that they have a weakness, and that weakness hasn’t been addressed or remediated early on.
I would totally agree with you that all that we've learned from neuroscience is incredibly helpful for us as educators because it really allows for us to determine where we need to put our resources, where we need to focus our energy and what our curriculum needs to look like at an early age.
The other thing that happens as children get older, particularly when they enter high school, is where do you find the time in this academic setting, for instance, to address the remediation of reading difficulty? I mean, we have to do it, but where do you find the time?
|
David Boulton: One of my favorite conversations was with Alex Granzin, who is the President of the Oregon School Psychological Association. His point was “why don't we just full stop?” It’s clear that children need science, math and social studies and they need all those other dimensions, but not having those isn't anywhere near as important as being off-the-track on reading and how it connects to everything else. So, the idea that we can think of reading remediation as ‘parallel,’ rather than as ‘central’ until it's working is illogical.
Nancy Hennessy: Well, it doesn't make a whole lot of sense. If we actually ask our teachers, our administrators and our specialists to step back and look at the prerequisite skills that students need in order to participate in a content area then, reading is the very first skill, and then, certainly the ability to express oneself in writing. For the struggling reader, both reading and written expression are very often affected. So, how do they interact in an academic environment if they don't have those skills?
And yet, I do understand, from having worked in schools, what the pressures and the demands are. We have high stakes testing. We have parents that want students to be in general education classes. We have administrators who are very focused on what's the latest thing that they have to attend to in terms of policy. So, there are competing demands and sometimes we lose sight of what's really essential.
David Boulton: Yes. There’s enormous institutional inertia working against the healthy development of the children in need.
Nancy Hennessy: There is. If you visit schools, and sit around the table at an administrative meeting, it becomes very apparent that the conversation is not necessarily about the individual needs of students, but more about policies, and political and community demands. Let's take a look at and re-focus on what it is that we want every child to leave school knowing and being able to do. Schools very often will attend to this as they engage in strategic planning, and there will be a renewed interest and focus on these topics, but they soon get lost in the bureaucracy. And this is institutional inertia.
Yet, I have to say that being an administrator is a difficult task. They face many challenges and there are many good administrators. The differences in the schools that thrive, I think, are administrators that are leaders versus administrators that are managers, and who don't forget about the leadership piece. Management is critical for the school to open every day, the buses to take the children to the right places, budgets to be balanced and so on, but it's administrative leadership that's so critical.
As we think about the preparation of educators, we talk a great deal about highly qualified teachers and there's no doubt that's important. However, I don't think we talk enough about the preparation of administrators, both general and special education administrators. I think this gets lost sometimes.
|
David Boulton: What I'd like to do now is step back for a moment and ask for an oversight of the International Dyslexia Association. How many people does the IDA serve? How many people are involved? After that let’s go down deep into reading and dyslexia and define some terms, and then hook back around into what are we doing about it in schools.
Nancy Hennessy: The International Dyslexia Association has a very proud history. The organization itself is over fifty years old and was originally the Orton Dyslexia Society. A few years ago, the organization became the International Dyslexia Association. We currently have over forty branches across the United States and some states have more than one branch. There are a few states where we don't have branches, unfortunately, and we're always trying to cultivate new branches so that we can serve constituencies across the country. We also have four international affiliates that we continue to work with actively, and one of our committees, in fact, is the global partners committee. We're working actively to bring other national affiliates into our group. We certainly cultivate relationships with other dyslexia associations, such as the British Dyslexia Association, European Dyslexia Association, and so on.
The branches work at the local level and interact with members and the public through conferences, workshops, parent meetings, newsletters, and referral lines that parents or educators can call for information about dyslexia. The branch board members all volunteers and they work very hard. Many of them are educators and parents of dyslexics. Many individuals on our boards, at the local level, are dyslexics.
IDA has a national board, a headquarters in Baltimore, Maryland, and a small staff that supports our board. Much like our local branches, our national board is made up of volunteers, including myself. We have varied representation on the board: researchers, practitioners, individuals who are dyslexic, attorneys, individuals involved in business and politics, and so on.
The International Dyslexia Association has over 13,000 members. Our focus is to support research, disseminate information, and promote effective practice. We’ve been known for years as the advocates or supporters of multi-sensory structured language, which evolved from the Orton-Gillingham approach. Dr. Samuel Orton is an individual whom we look up to and whose work we continue to reflect on. Some of us are fond of saying, "Dr. Orton was right." He was right in many respects, such as dyslexia being more widespread than originally thought, having a neurological base, explicit, systematic instruction being appropriate, and so on.
At the national level, IDA has an annual conference; we periodically have specialized conferences. We also have publications including our scholarly journal, The Annals of Dyslexia and the periodical Perspectives. We continue to publish and to develop materials that disseminate information such as, basic fact sheets and an educational outreach kit that can be used in schools and with parents to educate them about dyslexia. IDA solicits ands supports research proposals and we have special projects in place. For example, we're developing a matrix that will give the public more information about multi-sensory structured language programs, how they can be used, and what are most effective for prevention, intervention, or intensive remediation.
This organization works very hard and certainly, we all learn a great deal as we work together. We’re working so hard so that the resources dyslexics possess can be liberated to benefit society. Our ultimate client is the dyslexic and their family. Certainly, many of our members are professional, but this is really about how we can benefit the dyslexic and their family.
|
Dyslexia and the English Language:
David Boulton: Tell me about the distribution of the population that has dyslexia in different countries or languages.
Nancy Hennessy: Dyslexia is prevalent across languages because it is a language-based disability and it really doesn't matter whether it's Portuguese, Italian or Chinese. Certain languages are more transparent than others. There's more of a one-to-one correspondence between sound and symbol. But regardless of the language, because this is a neurological difficulty, brains are wired differently and the problem does persist across languages.
David Boulton: We've read studies that show that it's highest in the English language.
Nancy Hennessy: Well, I think that's probably true. When one begins to think about English, we can explain how our language developed and we certainly can explain the consistencies and inconsistencies of our language. In fact, when we teach a multi-sensory structured language program we talk to our students about what is regular in the language and what is explainable.
At the same time, we do have a very difficult orthography. We have forty-four or so speech sounds, dependent upon which linguist you're reading, and we have twenty-six letters and we use those letters in many different combinations to represent the sounds. As you look at our language, originating from Anglo-Saxon and the influence of the Romance languages and Greek and then, ultimately, the influence of some other languages, one begins to realize the complexity of being able to decode, and encode (spell) words. But that's really what multi-sensory structured language programs are about. They're about looking at how the language moves from being regular to irregular. What are the patterns that we can explain to our students, not so that they memorize those patterns, but so that they internalize and become familiar with the different configurations that will represent the sounds in our language?
|
David Boulton: What is dyslexia?
Nancy Hennessy: Dyslexia can be described in a number of different ways. Some of us are very fond of how Sally Shaywitz describes it. She talks about it as being a weakness in a sea of strengths; a weakness, specifically in language, in the phonological component of language. Others talk about it being an unexpected underachievement in a particular area. The International Dyslexia Association does have a formal definition for dyslexia that was co-developed with the National Institute of Health, and it is this definition that they currently use for dyslexia. That definition talks about the fact that it is a type of specific learning disability. It’s not the only type of learning disability there is, but a specific one that is language-based.
In fact, when we look at individuals who have language-based learning disabilities, about eighty percent of them have difficulty learning how to read. This is what happens with dyslexics. The difficulty is the result of difficulties with phonological processing, this ability to take in, manipulate, work with and then express language. When I described Ben earlier, I was talking about how he suddenly made this discovery that sounds make words. He was really lacking in phonemic awareness; an ability to work with and manipulate sounds so that we can put sounds together to not only read but spell words.
When we work with dyslexics and think about how we define dyslexia, we talk about this inability to decode and read words, not only correctly, but also in a fluent or automatic way. We also know, that for the dyslexic, there's often unintended consequences because of a lack of access to print; the unintended consequences being diminished vocabulary, and background knowledge, which certainly then affects comprehension.
When I work with teachers, I always say to them, "Think about the child who can't get through the words. They can't crack the code, the alphabetic-phonetic code, that our language is made up of." This is not about the child who reads things backwards or reverses letters. This is about the child who literally can't get through the words. All of their attention is focused on reading the word, and they don't appear to have any system for reading words, so they read them differently and spell them differently each time they see them.
|
David Boulton: What is reading?
Nancy Hennessy: Wow. What is reading? Well, reading is an exceptionally complex act. There are different models and different theories that tell us what reading is. Ultimately, reading is the ability to make meaning out of what it is that we read. That's the end goal. But what goes into that is very complex. When we come to print on a page, we have to bring with us some capabilities in the phonological area. We have to be able to work with sounds, we have to have a sense of whether or not what we are saying corresponds to what we’re hearing. We have to have this capability to isolate sounds, to identify sounds, to put sounds together in order to read words.
We also have to bring with us this connection to orthography, to the visual pattern. This is another component of reading that influences whether or not a child is proficient. We have to be able to recognize the visual patterns, the letters that represent the sounds; we have to be able to recognize chunks within words such as prefixes, suffixes, and roots. We have to be able to recognize syllable patterns. That phonology and orthography connection really needs to be very tight so that what we’re able to do then is read words in a very automatic way.
Then we also need to bring with us our meaning processor. As I’m speaking to you I am thinking about McClellan and Seidenberg’s model in which we use a phonological processor for taking in the sounds of our language and working with them. Then we have an orthographic processor and we’re taking in the visual representations (letters and letter patterns) and making this tight connection. But, at the same time, we need to bring our understanding of meaning, our mental lexicon, our vocabulary to bear on what it is we’re reading. So, that also facilitates our ability to read the words. And then, we have to bring our background knowledge or schema, the context in which we see the words so that we can make sense of the passage or the text that we’re being asked to read.
It’s incredibly complex and it’s fascinating as an educator to think about the fact that underlying reading are all these different neural mechanisms that really have to be working somewhat simultaneously and together in order for us to read words.
David Boulton: Relative to this, we’ve begun thinking of reading as a ‘code instructed and informed virtual reality experience.’ It’s an artificial simulation of language. It’s analogous to the way a player piano plays music with a scroll - the phonemes being the keys and the roll causing the keys to play such that they create comprehensible music. That it overlays, but is distinctly different than our language processes in that it’s an interface to a technology.
How does that fit for you relative to your description? What I heard you describing was different aspects of its complexity. But as a phenomena, it seems that it’s an artificial reality experience that is informed and instructed by a technology.
Nancy Hennessy: You’re talking about the code itself. A few things come to mind as you say that. I begin to think about the fact that for so many years there was spoken language without the alphabetic code. Individuals, who lived on the earth long, long ago, had an oral tradition and were able to process language quite nicely and communicate with one another without having that alphabetic code. I have a colleague, the next president of the IDA, who talks about dyslexia as being related to social consequences. If we didn’t have to read, dyslexics would function quite nicely without this alphabetic code getting in the way.
In response to what you just said, yes it does seem somewhat artificial as if it’s been layered on and created (which it has). Certainly, our language is natural; we come into the world being able to speak and communicate with one another. You know that initially little babies make all of the different sounds. As Patricia Kuhl says, they are universal citizens they make all the sounds and then, they begin to cull out these sounds that match the sounds of their native language. So, I think I can resonate with what it is that you said. It is somewhat artificial, it is a technology and it’s been layered on to give us yet another way of communicating.
David Boulton: Depending on which anthropological linguist you talk to, or if you go the genetic route, or follow the anthropological evidence about the development of the jaw and teeth, it appears as if we’ve been talking for between sixty thousand and a million years. There’s a lot of fuzziness about exactly when, but it’s been a long time. The alphabet is 3,500 years old or so, and the particular kinds of confusions that are unique to the challenges of today are only a few hundred years old.
So, there’s an unprecedented processing challenge that learning to read involves that is unlike any processing challenge that the human organism has ever experienced before.
Nancy Hennessy: Or was designed for. It is fascinating to think about that and what if we used a different kind of communication. I always think about Norm Geschwind’s words. He asked what if everyone came to school and had to learn music, as the way in which we communicated, would we have some individuals that had dysmusica? I think reading is analogous to this. It’s something that we created in order to communicate in a written way and we weren’t designed to be able to do that.
That’s a very interesting thing for an educator to think about because that’s not the way an educator thinks about reading.
"What must it
be like to come to school everyday and school is going to be all about the thing
that you don’t do well?" - 
