One San Diego Mother’s Battle For Her Dyslexic Son
Thursday, October 16, 2014
Aired 10/16/14 on KPBS News.
Elizabeth White's 10-year-old son is dyslexic. She has had to fight with the San Diego Unified School District to get her son diagnosed and get the help he needs.
Dyslexia was identified as a disorder in 1881 by Oswald Berkhan. Yet San Diego County parents are still fighting with school districts over how to help students with the world’s most common learning disability.
Here's how the challenge played out for one San Diego mother and her son.
Ten year-old Zachary White is in the fifth grade. He sits in his tutor’s classroom and reads aloud from "Charlotte’s Web."
“One of the pigs is a runt. It’s very small and weak and will never amount to anything,” he reads.
Today, Zachary can read at his grade level, but that took years of work. Zachary is dyslexic.
His mother, Elizabeth White, said the journey to get Zachary up to his grade level was tough. It wasn’t long ago he couldn’t read at all.
“Right now he’s up to grade-level reading. He’s been through a few years of dyslexia tutoring,” White said.
Zachary’s private tutor has worked with him for one hour at a time, three times a week, for three years, costing White $120 per hour. She credits this tutoring as the only reason her son is reading at his grade level today.
Kellie Sandman-Hurley has a doctorate in literacy with a specialty in dyslexia. She runs the Dyslexia Training Institute through the University of San Diego.
This is how she describes the disorder:
“Dyslexia is a phonological processing disorder. It affects the student’s ability to decode and encode. And so it affects their fluency rate, it affects their spelling. It just makes reading more difficult.”
Sandman-Hurley describes a dyslexic person’s brain as being wired uniquely. Our brains are divided into two hemispheres, left and right. When non-dyslexics read, their brains activate the left hemisphere to decode and encode letters into words and sentences.
But when dyslexics read, the right hemisphere of their brains activate first, then send the information to the left hemisphere and back to the right, Sandman-Hurley said. These extra steps are thought to be the reason why dyslexics have trouble reading and writing. For dyslexic children, learning to read can be torturous.
Dyslexics don’t “see” things backward, they see just like everyone else. Their brains use different cognitive pathways to read and write.
Sandman-Hurley and Yale University’s Dr. Sally E. Shaywitz say multi-sensory teaching can be a great way to teach dyslexics.
What's working for Zachary is called the Orton Gillingham method. Every lesson the student learns is reinforced with elements using sound, sight and movement. Dyslexic students can respond well to this technique, said Sandman-Hurley, but she cautions that each student’s needs should be taken into account, and the method should be tailored to the student.
Zachary still fights to read out loud. “A litter of pigs," he reads. "Than you do. A weakling makes trouble. Noun run along. Uh... now run along.” Zachary reads each word as though it exists unto itself, without any relationship to the words before or after.
Zachary's Long Road To A Diagnosis
The journey from suspecting a child may be dyslexic to getting help can be long and winding. For Zachary and his mother, it took nearly four years and cost his family thousands of dollars.
His mom knew something was wrong when her son started kindergarten. But she didn’t know what.
Signs of Dyslexia — Kindergarten to First Grade
- Trouble learning common nursery rhymes, such as “Jack and Jill”
- Difficulty learning (and remembering) the alphabet
- Seems to be unable to recognize letters in his/her own name
- Doesn’t recognize rhyming patterns like cat, bat, rat
- Reading errors that show no connection to the sounds of the letters on the page — will say “puppy” instead of the written word “dog” in an illustrated page with a dog shown
- Does not understand that words come apart
White talked with her son’s teacher about his problems. She put her faith and trust in the teacher’s training and knowledge about possible challenges her son may be facing.
In first grade, Zachary still could not read. One time, while White was talking to her father about Zachary's reading problems, she learned something she never knew about her dad. He is dyslexic, too. Dyslexia often runs in families and is passed down from one generation to the next.
Immediately, she requested her son’s school test him for dyslexia, but she learned that the San Diego Unified School District doesn’t test for that.
The assessments the district gives don’t identify dyslexic students, said Michelle Crisci, the district's coordinator for the Americans With Disabilities Act Section 504.
“These assessments wouldn’t point to 'maybe my child is dyslexic,'” Crisci said. “It would let a parent, teacher and educators who support the general education teachers and students know where the student is in relation to other students.”
Frustrated, White went to the private market to help her son.
“I went online and found somebody that did testing for dyslexia, paid out of pocket, and that’s how I ended up getting my first diagnosis,” White said.
Crisci said that San Diego Unified would intervene if a parent was able to pay for a private dyslexia assessment.
“If a parent came to us with an outside assessment that indicated the student had dyslexia, then that would be different,” Crisci said. “That’s why I’m here talking to you because that would fall under the Section 504. That student, their team would get together and develop a real individualized plan for the student.”
White spent $800 for her son’s testing, and with diagnosis in hand she went back to her son’s school for help. But she says the school offered Zachary the same special education help that autistic children get. She said the two very different disabilities were being treated interchangeably.
“There’s no differentiation between my son being dyslexic and other kids being autistic,” the mother said.
Sandman-Hurley said that’s not a surprise — teachers rarely have any training in dyslexia.
“You can have a teacher go all the way through their master's level of teaching, get a master's degree as a reading specialist, get a special education degree, and they still (have) never had one class in dyslexia,” she said.
A Diagnosis Is No Guarantee
Having a dyslexia diagnosis doesn’t mean a student will be classified as learning disabled, Crisci said.
“Learning disability falls under IDEA (Individuals with Disability in Education Act), which means something totally different than just to say you have dyslexia,” Crisci said. “Having dyslexia would be only one part of qualifying for a learning disability.”
The other part, she said, is that students must show a discrepancy between what they are capable of and how they are performing. The students must be a grade and a half behind.
In legal circles, that is called the "Discrepancy Model." Crisci made it very clear that San Diego Unified follows that policy when identifying dyslexic children, or any disabled children.
“Students must show a 1.5 deviation from the norm,” she said.
Signs of Dyslexia — Second Grade and Up
- Very slow in acquiring reading skills
- Reading is slow and awkward
- Trouble reading unfamiliar words, often making wild guesses because he/she cannot sound out the word
- Doesn’t seem to have a strategy for reading new words
- Searches for a specific word and ends up using vague language such as “stuff” or “thing” a lot, without naming the object
- Messy handwriting
- Low self-esteem that may not be immediately visible
Margaret Dalton is the supervising attorney at the University of San Diego’s Education and Disability Law Clinic. She represents disabled students.
Dalton said that if San Diego Unified is following the "Discrepancy Model" to identify specific learning disabilities, then they are 10 years behind the law. Before 2004, she said, the discrepancy model was “...what ruled specific learning disability. You had to show that discrepancy, but that’s no longer the case. The law changed 10 years ago.”
Dalton said that parents who believe their child needs to be tested must request it from the district in writing, and the district is obligated to respond.
“When a parent requests a special education assessment, the district only has two choices. They can agree to assess, and it’s their duty to assess, or they have to give something called ‘prior written notice,’” Dalton said. “They have to give a written document to the parents that lays out the reasons they’re refusing.”
Tough Calls For Parent
White spent years and thousands of dollars getting her now fifth-grade son the help the schools are required to give him. Today, she’s starting the whole battle over again with her kindergartener. And she’s hit her first roadblock.
“He started kindergarten and we requested testing, but they say he’s not behind a grade level,” White said. “I’m not sure how a kindergartener can be behind a grade level. They’re refusing to test him.”
She’s decided to keep paying out-of-pocket for tutoring to help her youngest child.
Signs of Dyslexia — Young Adults
- Childhood history of reading and spelling difficulties
- While reading skills have developed over time, reading still requires great effort and is done at a slow pace
- Rarely reads for pleasure
- Slow reading of most materials — books, manuals, subtitles in films
- Despite good grades, will often say that he/she is dumb or is concerned that peers think that he/she is dumb
- Performs rote clerical tasks poorly
- Spoken vocabulary is smaller than listening vocabulary
Sandman-Hurley said waiting to test a student who is showing signs of learning disabilities "can be tragic for the student." She said early intervention is key for dyslexic students to succeed but instead they are often ignored.
“They went to the teacher in first grade and they said, ‘Oh, they’ll outgrow it.’ And they went in second grade and they said, ‘Oh, no, he’s fine.’ And all of a sudden, they’re in third grade and the child can’t read,” Sandman-Hurley said.
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