Enid started Thirst for Learning, Edgewood, WA, to help kids like her own son Anthony. This is his story. As much as it is his story, it is also Enid's. Standing behind every dyslexic child, is his mother. Fighting the labels and battling dyslexia.
Dyslexia's Prison: Treating Anthony's 'profound' condition
By DEBORAH BACH, SEATTLE POST-INTELLIGENCER REPORTER
EDGEWOOD -- At his 13th birthday party, Anthony Duncan is where he can usually be found -- on the basketball court behind his family's house.It's where he's most at home. There are no words to trip him up, no spelling test terrors. No lonelylunch breaks.
No label of mentally retarded.
Wearing an orange T-shirt and baggy shorts, Anthony sweats in the late summer sun. Ed Duncan winces as he watches his son's shot roll off the rim. "Oh, you gotta make those, Antonio," he says. "You're killing me!"
Inside, Enid Duncan is preparing a birthday dinner for Anthony, her youngest. She's gone all out, decorating the suburban split-level with a basketball theme. The table is set with paper plates and napkins adorned with basketballs. Enid even managed to find a basketball piƱata. Anthony's 15-year-old brother, E.J., and his 16-year-old sister, Angelica, are there. So are cousins, uncles and grandparents.
One thing Enid couldn't provide that evening eight months ago was a guest list of 13-year-olds.
During his two years in a special-education class in a Fife public school, Anthony had become isolated. He didn't fit in with his classmates, whose disabilities ranged from Down syndrome to severe behavioral problems.
To the regular kids he was different -- a playground pariah. Anthony would come home from school with eyes so sad they broke Enid's heart. She believes the public school system failed her severely dyslexic son, whose education has become an all-consuming, cross-country crusade that has cost the family financially and emotionally.
The quest to get Anthony help led to an assessment no parent wants to hear: "intellectually deficient." The Duncans lost a business and spent thousands of dollars. They tried private school. They tried tutors. No one, it seemed, could teach Anthony. By age 10, he was reading at a kindergarten or early first-grade level.
Desperate, Enid and Ed took him to Florida two years ago to attend a small school for dyslexic kids. It was the end of a long road, and the start of what would eventually signify redemption.
The Duncans' struggle to find help is not unique. There are millions of parents like them in America, with experts estimating that up to 15 percent of the population is dyslexic. Though much more is known about the causes and treatment of dyslexia than a decade ago, many children are not identified until they are well behind their peers.
Some, like Anthony, languish in special-education classes.
In many ways, the boy with the dark curls and mischievous smirk is a typical middle-schooler. He likes video games, with "NBA Live" currently No. 1. He idolizes Ray Allen, his favorite Seattle Sonic. His bedroom, decorated with stuffed animals and a shrine to the Sonics, suggests childhood isn't quite left behind.
Anthony isn't given to spilling his feelings. He's never been a complainer, but over the past few years, Enid noticed changes in his demeanor that worried her.
He became withdrawn and walked with his head down. He said little about school, but Enid looked at his face and understood as only a mother can how her child was hurting. Anthony would come home disturbed by the chaos in his special-ed classroom, where he spent part of the day. "Mommy," he'd ask, "why is Jimmy trying to hit the teacher?"
Enid took Anthony to see a doctor, who suggested putting him on anti-depressants. Enid, who doesn't want her children using drugs, rejected the idea.
She felt sure that Anthony's sorrow was rooted in dyslexia, characterized by difficulty with word recognition, spelling and decoding -- the ability to translate printed words into written language. Dyslexia is widely believed to be genetically linked, and scientists have identified four chromosomes that may be involved.
Ed
is dyslexic, though not as severely as Anthony, but has managed to
succeed despite his ongoing reading difficulties. Angelica, a budding
actress and singer, shows no signs of such challenges and typically
pulls down straight As.
E.J., who has dysgraphia -- a disorder characterized by distorted writing or incorrect spelling -- became frustrated at school and dropped out. He wrote a college entry exam in early February and is thinking about studying graphic design.
Given Ed's dyslexia, it wasn't hard to figure out early that something was amiss with Anthony.
Progress was slow.
In May 2000, after Anthony finished second grade, his teacher, Trudy Dunn, suggested additional testing to determine whether there were other issues, maybe even physical problems, affecting the boy.
Now retired, Dunn is pained that she couldn't reach Anthony. She describes him as one of the "most profoundly dyslexic" children she's worked with, but said he was extremely bright, a precocious thinker whose complex ideas belied his age.
"He doesn't belong in special ed," Dunn says. "He did really well but his progress was not measurable, which is very unusual for a child who worked that hard and was that cooperative.
"I didn't have a clue what was going on with him. He came from a strong, loving family. He had everything going for him."
Increasingly concerned about Anthony's progress, Enid took him to the LEARN Clinic, part of the University of Washington's graduate training program in clinical psychology, for an assessment.
Enid eagerly awaited the results, hoping to finally get some answers about Anthony's struggle to read and write.
One day in October 2000, she checked the mail and saw an envelope with the university's return address. Scrolling through the enclosed report, Enid felt her heart sink. It concluded that Anthony was "intellectually deficient," with an IQ of 59 -- developmentally disabled enough to warrant institutionalization.
No one told Enid that Anthony would never read. "But when they give you an IQ of 59," she says, "you know what they're telling you."
Enid had hoped the clinic would provide some answers about dyslexia, typically diagnosed with a battery of tests. She repeatedly mentioned Ed's dyslexia to the psychologist who conducted the assessment, she says, and told her that Anthony also displayed symptoms of dyslexia.
The psychologist who saw Anthony declined to comment for this story, as did the clinic's director.
The assessment devastated Enid. The woman featured in a May 1994 issue of Washington CEO magazine, the president of an asphalt company with annual revenues of $5 million, sunk into despair.
She began seeing a counselor, who put her on anti-depressants and sleeping pills. A devout Catholic, Enid knew suicide was a sin. She also understood temptation. So she gave her pills to Ed and asked him to dole out only what she needed.
When it became clear that Enid could no longer run HiGrade Construction, she and Ed sold the company. They now run a much smaller business selling bark mulch.
"It makes me feel so powerless," she says. "I know what I'm doing is very important because it's my son, but it's very difficult."
In fall 2000, Anthony returned to the Fife district, attending fourth and fifth grades in a special-ed class. Diagnosed with severe dyslexia, Anthony couldn't remember his birthday, but "he can engage in a discussion about Thomas Edison," according to a district report.
Two years later, an admission form from the same district would list Anthony's disability as "mental retardation" -- another blow to the family.
E.J., who has dysgraphia -- a disorder characterized by distorted writing or incorrect spelling -- became frustrated at school and dropped out. He wrote a college entry exam in early February and is thinking about studying graphic design.
Given Ed's dyslexia, it wasn't hard to figure out early that something was amiss with Anthony.
'Doesn't belong in special ed'
At age 6, Anthony was given the Wechsler Intelligence Scale for Children III, the standard IQ test for children. He scored a 73, well below average, and was diagnosed as "learning disabled." The Fife School District recommended putting him in a special-ed class. Instead, Enid and Ed took him to Hamlin Robinson School in Seattle, a private school for dyslexic children.Progress was slow.
In May 2000, after Anthony finished second grade, his teacher, Trudy Dunn, suggested additional testing to determine whether there were other issues, maybe even physical problems, affecting the boy.
Now retired, Dunn is pained that she couldn't reach Anthony. She describes him as one of the "most profoundly dyslexic" children she's worked with, but said he was extremely bright, a precocious thinker whose complex ideas belied his age.
"He doesn't belong in special ed," Dunn says. "He did really well but his progress was not measurable, which is very unusual for a child who worked that hard and was that cooperative.
"I didn't have a clue what was going on with him. He came from a strong, loving family. He had everything going for him."
Increasingly concerned about Anthony's progress, Enid took him to the LEARN Clinic, part of the University of Washington's graduate training program in clinical psychology, for an assessment.
Enid eagerly awaited the results, hoping to finally get some answers about Anthony's struggle to read and write.
One day in October 2000, she checked the mail and saw an envelope with the university's return address. Scrolling through the enclosed report, Enid felt her heart sink. It concluded that Anthony was "intellectually deficient," with an IQ of 59 -- developmentally disabled enough to warrant institutionalization.
No one told Enid that Anthony would never read. "But when they give you an IQ of 59," she says, "you know what they're telling you."
Enid had hoped the clinic would provide some answers about dyslexia, typically diagnosed with a battery of tests. She repeatedly mentioned Ed's dyslexia to the psychologist who conducted the assessment, she says, and told her that Anthony also displayed symptoms of dyslexia.
The psychologist who saw Anthony declined to comment for this story, as did the clinic's director.
The assessment devastated Enid. The woman featured in a May 1994 issue of Washington CEO magazine, the president of an asphalt company with annual revenues of $5 million, sunk into despair.
She began seeing a counselor, who put her on anti-depressants and sleeping pills. A devout Catholic, Enid knew suicide was a sin. She also understood temptation. So she gave her pills to Ed and asked him to dole out only what she needed.
When it became clear that Enid could no longer run HiGrade Construction, she and Ed sold the company. They now run a much smaller business selling bark mulch.
"It makes me feel so powerless," she says. "I know what I'm doing is very important because it's my son, but it's very difficult."
In fall 2000, Anthony returned to the Fife district, attending fourth and fifth grades in a special-ed class. Diagnosed with severe dyslexia, Anthony couldn't remember his birthday, but "he can engage in a discussion about Thomas Edison," according to a district report.
Two years later, an admission form from the same district would list Anthony's disability as "mental retardation" -- another blow to the family.
The Fife district uses a variety of instructional methods to help dyslexic children, making teacher training a priority, using programs that are research-based and looking to groups such as the International Reading Association for guidance.
Assistant Superintendent Marti Harruff doesn't believe the district was given a chance to succeed with Anthony, but she sympathizes with Enid.
"My heart feels for her because having a child who has struggles, I know, is heart-wrenching. It feels like she wants to blame somebody, but I don't think we're to blame."
Many educators agree that there is no best method for working with dyslexic children. John Clough, a special-education supervisor for Seattle Public Schools, said the district has a team of specialists that works with teachers and principals to devise personalized approaches for dyslexic students. Putting them in a special-ed class, Clough says, is a last resort.
Enid says Anthony learned little during his time in the Fife district, and would often come home depressed. She comforted him when students outside of his class called him "stupid" or "retarded." She desperately worried about him falling further behind, but didn't know where else to turn.
Two years ago, in February, Ed and Enid gathered with the children in their sitting room to pray the rosary. They prayed after dinner for the 40 nights of Lent, Ed leading the family. He would focus prayers on each of his children by turn, and one night he looked at Anthony.
If you could ask God to grant one wish, Ed asked, what would it be?
"To learn how to read," Anthony said.
Two days later, the phone call came.
At a conference in Texas, Bolz met a parent whose two dyslexic children were helped by a Florida doctor. The man spoke highly of Donald Lyman, who runs a school for dyslexics, using a controversial teaching method.
In March 2002, Ed and Anthony flew to Winter Park, Fla. Anthony started classes at Lyman's school, the Alliance Academy, in a class with about 10 students and four teachers. At the time, Ed says, 11-year-old Anthony knew only a few letters of the alphabet and was unable to write his name.
When Anthony first arrived, he wanted to talk about nothing but his two passions: basketball and the Sonics. "He was very quiet, very down on himself," Lyman recalls. "He didn't think anyone could teach him. Teachers tried, his parents tried, and he could never really learn. He had to go to school every day with extreme fear and stress."
At the academy, Anthony initially found his new classes strange. Lyman's method relies heavily on bilateral movement, requiring students to mimic writing by stepping out the strokes of letters and words, tapping them out with their hands on a tabletop or waving the strokes with their arms. Students then write words and practice what Lyman calls "snailing" -- slowly sounding out the words.
Lyman worked with Anthony on evenings and weekends, and says in six months he progressed from a first- to a sixth-grade reading level. Progress came at a premium. The Duncans estimate they spent between $50,000 and $60,000 on their trips to Florida, $20,000 of it on tuition alone. They also paid for Anthony's special-ed teacher in Fife, Lynn Sissel, to travel to Florida and observe Lyman's method.
Sissel, who returned at her own cost, has used the techniques to teach struggling readers, including Anthony, who was in her class part-time for two years. Harruff says the students taught with Lyman's method have learned faster and retained more.
Beyond the financial costs, the work with Lyman separated the family for months and required an enormous time commitment.
"If I had a job, I would've lost it," Ed says.
Assistant Superintendent Marti Harruff doesn't believe the district was given a chance to succeed with Anthony, but she sympathizes with Enid.
"My heart feels for her because having a child who has struggles, I know, is heart-wrenching. It feels like she wants to blame somebody, but I don't think we're to blame."
Many educators agree that there is no best method for working with dyslexic children. John Clough, a special-education supervisor for Seattle Public Schools, said the district has a team of specialists that works with teachers and principals to devise personalized approaches for dyslexic students. Putting them in a special-ed class, Clough says, is a last resort.
Enid says Anthony learned little during his time in the Fife district, and would often come home depressed. She comforted him when students outside of his class called him "stupid" or "retarded." She desperately worried about him falling further behind, but didn't know where else to turn.
Two years ago, in February, Ed and Enid gathered with the children in their sitting room to pray the rosary. They prayed after dinner for the 40 nights of Lent, Ed leading the family. He would focus prayers on each of his children by turn, and one night he looked at Anthony.
If you could ask God to grant one wish, Ed asked, what would it be?
"To learn how to read," Anthony said.
Two days later, the phone call came.
Down on himself
It was the principal of Angelica's school, Dennis Bolz, whose wife had taught Anthony in Fife.At a conference in Texas, Bolz met a parent whose two dyslexic children were helped by a Florida doctor. The man spoke highly of Donald Lyman, who runs a school for dyslexics, using a controversial teaching method.
In March 2002, Ed and Anthony flew to Winter Park, Fla. Anthony started classes at Lyman's school, the Alliance Academy, in a class with about 10 students and four teachers. At the time, Ed says, 11-year-old Anthony knew only a few letters of the alphabet and was unable to write his name.
When Anthony first arrived, he wanted to talk about nothing but his two passions: basketball and the Sonics. "He was very quiet, very down on himself," Lyman recalls. "He didn't think anyone could teach him. Teachers tried, his parents tried, and he could never really learn. He had to go to school every day with extreme fear and stress."
At the academy, Anthony initially found his new classes strange. Lyman's method relies heavily on bilateral movement, requiring students to mimic writing by stepping out the strokes of letters and words, tapping them out with their hands on a tabletop or waving the strokes with their arms. Students then write words and practice what Lyman calls "snailing" -- slowly sounding out the words.
Lyman worked with Anthony on evenings and weekends, and says in six months he progressed from a first- to a sixth-grade reading level. Progress came at a premium. The Duncans estimate they spent between $50,000 and $60,000 on their trips to Florida, $20,000 of it on tuition alone. They also paid for Anthony's special-ed teacher in Fife, Lynn Sissel, to travel to Florida and observe Lyman's method.
Sissel, who returned at her own cost, has used the techniques to teach struggling readers, including Anthony, who was in her class part-time for two years. Harruff says the students taught with Lyman's method have learned faster and retained more.
Beyond the financial costs, the work with Lyman separated the family for months and required an enormous time commitment.
"If I had a job, I would've lost it," Ed says.
Enid
worries about children from less advantaged backgrounds than Anthony's.
"My child, I helped. But the millions of other children who are not
getting help, that's what I get upset about," she says.
Anthony spent much of last summer studying and learning new words in preparation of his return to school in the fall. He and Enid worked for hours in the basement, Enid writing terms on a whiteboard and Anthony practicing stepping them out, then writing them. He would often get so mentally fatigued he'd need to take a nap.
In early September, Lyman arrived for 10 days to help Anthony get ready to write an entry test at All Saints Catholic School in Puyallup.
The day before the test, Anthony spent most of the afternoon and evening pacing through the house, writing out difficult words on napkins and following Enid around, asking her to check them.The next morning, Ed drove Anthony to the school, where he was led into the teacher's lounge to write the test.
Anthony was asked to read a list of about 20 vocabulary words. At first, he just stared at the page. Ed's heart caught in his chest. He figured Anthony had frozen up, but the boy relaxed after the teacher prompted him.
"Oh, I can read it," Anthony told her. "I didn't know you wanted me to read it out loud."
Then Anthony read a story about Pele, the famous Brazilian soccer player, and answered some questions. He struggled a little over the math problems but felt confident about the reading and writing.
Afterward, the teacher went to talk to Principal Jack Nelson. Ed was worried. The principal had told him that the school isn't equipped to handle students with severe special needs.Nelson soon called Anthony and Ed into his office and sat them down.
"Well, I think you're going to find a nice home here," he said.
Anthony smiled. Ed wept with relief.
"Did you have anything to eat, Antonio?" Ed asks.
"I don't need anything," Anthony responds sleepily.
At the school, Anthony wanders around the hallway, absently checking out old class photos on the walls and worrying about having to write in class. Specifically, he's thinking about using commas properly. After Ed fills out some forms, Nelson arrives and takes them down to Room 6B, where Anthony is starting sixth grade, a year behind where he should be.
When the bell rings, a chattering gaggle of girls spills into the room. Anthony sits at his desk while the rest of the students bounce around noisily. Teacher Kathleen Buxell rings a bell to bring the class to attention.
"We need to move with a bit more alacrity," she says.
A kind-looking woman wearing a vest adorned with cats, Miss Buxell is fond of saying "alacrity," "pish posh" and "pesky." Throughout the morning's lessons, she introduces Anthony to the other students and occasionally stops at his desk, whispering instructions.
Anthony will have Buxell for all classes except science, which is taught by another teacher, and math, for which he'll receive individual instruction in a modified program. Buxell has made some adjustments for Anthony as she has with some other students, giving him fewer spelling words than the honors students but more than students with challenges greater than his.
His first day is a sunny September afternoon, the kind that makes summer seem like a lingering gift, and Anthony is out on the playground after lunch. He's shooting hoops with boys from his class. He's smiling, relaxed.
A girl joins in, trying in vain to insert herself between the much bigger boys and the ball. Anthony catches it and hands it to her, gentlemanly.
Weeks later, in early November, Enid jubilantly reviews the scores on Anthony's student progress reports: 93 percent in science; 88 percent in social studies. And his reading score, practically jumping off the page -- 100 percent. This is the boy who thought no one could teach him to read. This is the boy who kept trying anyway.
Buxell says Anthony is doing remarkably well, that he joins in class discussions and grasps concepts. He has a few weak areas, particularly grammar and math, but she says his word recognition, oral reading and spelling are on par with his classmates.
"He could easily fall in pace with the rest of the students," she says. "I'm not sure he's exactly there yet, but he certainly could be."
By January, Anthony is playing on school and community league basketball teams, his first shot at organized sports. At a recent game, he scores 32 points as Ed, the team's coach, roots him on.
In mid-February, Enid takes Anthony to be tested by a psychologist at Mary Bridge Children's Health Center in Tacoma. Anthony is nervous the night before, and Enid is reluctant to have him tested again. But that label -- mentally retarded -- gnaws at her, and, she realizes, at Anthony.
He receives an IQ score of 81, much higher than on the UW test, but the psychologist evaluating him concludes that Anthony's "unique set of thinking and reasoning abilities" make it impossible to evaluate his intelligence by a single test score, rendering the assessment meaningless.
Enid is relieved. "It's a new world, a new beginning, for us and for Anthony," she says.
Anthony only wants to know one thing. "Am I mentally retarded?" he asks the doctor several times.
No, the doctor tells him. You are not.
He is, finally, just a regular kid.
Anthony spent much of last summer studying and learning new words in preparation of his return to school in the fall. He and Enid worked for hours in the basement, Enid writing terms on a whiteboard and Anthony practicing stepping them out, then writing them. He would often get so mentally fatigued he'd need to take a nap.
In early September, Lyman arrived for 10 days to help Anthony get ready to write an entry test at All Saints Catholic School in Puyallup.
The day before the test, Anthony spent most of the afternoon and evening pacing through the house, writing out difficult words on napkins and following Enid around, asking her to check them.The next morning, Ed drove Anthony to the school, where he was led into the teacher's lounge to write the test.
Anthony was asked to read a list of about 20 vocabulary words. At first, he just stared at the page. Ed's heart caught in his chest. He figured Anthony had frozen up, but the boy relaxed after the teacher prompted him.
"Oh, I can read it," Anthony told her. "I didn't know you wanted me to read it out loud."
Then Anthony read a story about Pele, the famous Brazilian soccer player, and answered some questions. He struggled a little over the math problems but felt confident about the reading and writing.
Afterward, the teacher went to talk to Principal Jack Nelson. Ed was worried. The principal had told him that the school isn't equipped to handle students with severe special needs.Nelson soon called Anthony and Ed into his office and sat them down.
"Well, I think you're going to find a nice home here," he said.
Anthony smiled. Ed wept with relief.
A second chance
Two days later, Ed sits in his living room, waiting to take Anthony to school for the first time in close to a year. Anthony emerges from his bedroom bleary-eyed, dressed in a school uniform of crisp navy pants, a white button-up shirt and a red sweatshirt over it."Did you have anything to eat, Antonio?" Ed asks.
"I don't need anything," Anthony responds sleepily.
At the school, Anthony wanders around the hallway, absently checking out old class photos on the walls and worrying about having to write in class. Specifically, he's thinking about using commas properly. After Ed fills out some forms, Nelson arrives and takes them down to Room 6B, where Anthony is starting sixth grade, a year behind where he should be.
When the bell rings, a chattering gaggle of girls spills into the room. Anthony sits at his desk while the rest of the students bounce around noisily. Teacher Kathleen Buxell rings a bell to bring the class to attention.
"We need to move with a bit more alacrity," she says.
A kind-looking woman wearing a vest adorned with cats, Miss Buxell is fond of saying "alacrity," "pish posh" and "pesky." Throughout the morning's lessons, she introduces Anthony to the other students and occasionally stops at his desk, whispering instructions.
Anthony will have Buxell for all classes except science, which is taught by another teacher, and math, for which he'll receive individual instruction in a modified program. Buxell has made some adjustments for Anthony as she has with some other students, giving him fewer spelling words than the honors students but more than students with challenges greater than his.
His first day is a sunny September afternoon, the kind that makes summer seem like a lingering gift, and Anthony is out on the playground after lunch. He's shooting hoops with boys from his class. He's smiling, relaxed.
A girl joins in, trying in vain to insert herself between the much bigger boys and the ball. Anthony catches it and hands it to her, gentlemanly.
Weeks later, in early November, Enid jubilantly reviews the scores on Anthony's student progress reports: 93 percent in science; 88 percent in social studies. And his reading score, practically jumping off the page -- 100 percent. This is the boy who thought no one could teach him to read. This is the boy who kept trying anyway.
Buxell says Anthony is doing remarkably well, that he joins in class discussions and grasps concepts. He has a few weak areas, particularly grammar and math, but she says his word recognition, oral reading and spelling are on par with his classmates.
"He could easily fall in pace with the rest of the students," she says. "I'm not sure he's exactly there yet, but he certainly could be."
By January, Anthony is playing on school and community league basketball teams, his first shot at organized sports. At a recent game, he scores 32 points as Ed, the team's coach, roots him on.
In mid-February, Enid takes Anthony to be tested by a psychologist at Mary Bridge Children's Health Center in Tacoma. Anthony is nervous the night before, and Enid is reluctant to have him tested again. But that label -- mentally retarded -- gnaws at her, and, she realizes, at Anthony.
He receives an IQ score of 81, much higher than on the UW test, but the psychologist evaluating him concludes that Anthony's "unique set of thinking and reasoning abilities" make it impossible to evaluate his intelligence by a single test score, rendering the assessment meaningless.
Enid is relieved. "It's a new world, a new beginning, for us and for Anthony," she says.
Anthony only wants to know one thing. "Am I mentally retarded?" he asks the doctor several times.
No, the doctor tells him. You are not.
He is, finally, just a regular kid.