When Reading hurts A story of a child with Dyslexia

Betty - posted on 11/01/2010 ( 1 mom has responded )




When Reading Hurts

A Mother Learns to Decode Dyslexia with the Help of Her Son and Other Experts

My earliest school memory is from Starr King Elementary in Long Beach, California, when the classroom teacher and school librarian selected me to join the accelerated reading club. Our little group met weekly in an airy, sunny room full of books. We must have been smug little show-offs, elevated and admired just because reading came so easily, so naturally. We got to read aloud to the other kids in class, the ones who just couldn’t read as well, who just weren’t as smart.

Or so we thought.

Most people believe reading skill reflects intelligence — in essence, you read well if you’re smart, and if you struggle to read, your intelligence just doesn’t quite measure up.

The corollary is that the obviously smart person who struggles to read just isn’t trying hard enough.

Both beliefs are wrong.
When Two Vowels Go Walking

For my son, reading has been a nightmare — with letters on a page assembled in apparently random patterns with no particular relationship to sound or meaning.

I never appreciated the gift of easy reading — or the pain, humiliation, embarrassment, and damage to self-esteem associated with reading difficulties — until I woke up to the fact my smart little boy just wasn’t catching on, no matter how hard he worked.

I had read to him as an infant, a toddler, and throughout his childhood. While he loved hearing stories, he just couldn’t read them on his own when it seemed time for him to master the skill. Listening to him struggle to read aloud was cringe-worthy, difficult, and completely baffling. There was no rhythm, cadence, or apparent understanding of how to sound out a word, no matter how much prompting, review, encouragement, or instruction.

His relationship to the written word was frightful, what educator Horace Mann described as “skeleton-shaped, bloodless, ghostly apparitions.” He may as well have been trying to decipher Morse code or the Rosetta Stone.

Nothing seemed to help enhance his reading: not easy-readers in subjects he liked; not summer school enrichment classes or expensive tutoring sessions during the school year; not hours at home drilling with flash cards; not helpful little phrases such as, “when two vowels go walking, the first one does the talking.” Not even the promise of a new bike if he finished reading a shelf full of books on his own.

Finally, in 3rd grade, a battery of tests administered by the school psychologist confirmed that his performance in school did not measure up to his intellectual ability, and he landed in special education classes. He got extra time in class, modified homework, and slowed-down instruction in his school’s Learning Center, but as the clock ticked and years passed, he lagged behind his classmates.

They were reading to learn, while he was still learning to read.

They were reading for pleasure, while he was reading in pain.
Tips for Parents

1) Push for assessment if you suspect dyslexia or other learning disability; time is of the essence; ask for testing of all suspected disabilities as well as assistive technology.

2) Learn all you can about the issue, and realize you must advocate for your child.

3) Bring a knowledgeable advocate (or attorney) to meetings; document everything and keep impeccable records.

4) Bring to meetings a photo of your child, a statement in your child’s own words, or even a video of your child reading to make your child’s struggle real to decision-makers.

5) Focus on your child’s strengths: mechanical ability, musical aptitude, sports ability, artistic talent, etc.

It made no sense to me. The harder he worked at reading, the more frustrated and hopeless he felt — and so did I. He compensated for his lack of reading skills by honing his athletic ones; he became an accomplished baseball player with a natural swing, an accurate arm, and an uncanny ability to track the trajectory of a ball hit to the outfield. The book on him has always been that he is “coachable,” but no amount of coaching in reading ever resulted in any significant gains.

He had no difficulty learning, just reading the words.

Sometimes I read stuff twice and it doesn’t make any sense, and I get confused. I have to concentrate so much on the reading in the textbook, I can’t learn what I’m supposed to be learning about. So it takes forever to keep going back and read it again. Then I run out of time and have lots of homework.

He had no problems comprehending what he heard, just reading out loud.

When we’re reading out loud in class, I sometimes look at a word and I say what I think it is, then read three more words, and realize it’s wrong. So I go back and say it correctly and then I lose my thought. I don’t really stay on the lines that much. I might get to the end of a sentence, and skip a line and then go back, and I’m all jumbled up and have to stop, and then I feel embarrassed.

With his keen observational skills, outside-the-box thinking, and easygoing ability to get along with just about everyone, life was pretty easy for him, everywhere but at school. There, success is determined by scores on standardized tests — and his future life chances depend on measuring up.

By the time he reached 7th grade, with his ability to read lagging far behind, I lay awake nights worried about his past, his present, his future: What had I done wrong? What could I do to help him? What if he never learned to read at all?

What we needed was a miracle. And after years of searching, hoping, and praying, we finally got one.
A Mother on a Mission

On a friend’s recommendation, I phoned the Dyslexia Awareness and Resource Center in Santa Barbara and finally spoke with Joan Esposito, the woman who cofounded the center in 1990.

After listening patiently to my story about my son’s reading struggles, she interrupted me in her characteristically blunt fashion. “For a smart woman, you have a lot to learn,” she noted. “Your son is dyslexic; that’s all.”

“No,” I said, “he’s been diagnosed with something called ‘specific learning disability,’ but I don’t know, specifically, what that means. They talk about visual processing and memory issues, but no one has ever suggested he’s dyslexic. Doesn’t that mean he sees letters backwards?”

Clearly exasperated, she told me that “specific learning disability” is an umbrella term that includes dyslexia — but the word is rarely if ever mentioned in the public schools. Then she ordered me to come to her office as soon as possible, where she planned to set me straight.
Regional Resources

Dyslexia Awareness and Resource Center 928 Carpinteria St., Ste. 2; 963-7339; dyslexiacenter.org. Founded by Joan and Leslie Esposito in 1990, with the office open since 1991, the center offers a lending library of books, tapes, and articles, as well as advocacy and education services. Joan’s story is poignantly told in the award-winning 12-minute production, Dyslexia Lasts a Lifetime.

Lindamood-Bell Learning Center 925 De la Vina St.; 564-1854; LindamoodBell.com. “Enhancing learning for all people, for all ages, for life.” Assessments, one-on-one and group instruction in the Lindamood-Bell Learning Processes.

Recording for the Blind & Dyslexic 5638 Hollister Ave., Ste. 210, Goleta; 681-0531; rfbd.org. Extensive digital library, textbooks and audiobooks; sign up for newsletter.

Santa Barbara Individualized Instruction & Tutoring sbiit.com. Patrick J. Bunnemeyer, MA.

Special Needs Project 324 State St., Ste. H; 962-8087; specialneeds.com. A bookstore for those concerned with disability and child development.

Assistive Technology

• Pulse Smartpen by Livescribe: Pen with a camera, microphone, computer, and recorder that works with a special notebook that finds lecture notes easily. livescribe.com.

•  NaturalReader: Software that translates text to speech, and speech to text. naturalreaders.com.

• Bookshare: Textbooks, novels, and other publications downloadable to computers, MP3, etc. bookshare.org.

This patron saint of dyslexics maintains a sanctuary in an upstairs office on Carpinteria Street. The walls are lined with framed proclamations signed by distinguished city, county, state, and federal officials commending Esposito for her work — and a dozen inspirational magazine covers, photos of famous dyslexics, and drawings by children expressing their painful reading experiences.

An article reprinted from Fortune Magazine, “The Dyslexic CEO,” caught my eye; it featured a photo of financial wizard Charles Schwab at age 13 — the same age as my son. It recounted the childhood reading struggles of dozens of other successful entrepreneurs — including Kinko’s Paul Orfalea and Virgin Atlantic Airways’ Richard Branson.

Their stories were nearly identical to what was going on with my son.

It was a revelation. I felt like my son and I had arrived at the place we needed to be, and found the person we needed to meet.

She described how she was always a struggling reader until she was finally diagnosed as dyslexic at the age of 44, as a student at Santa Barbara City College.

With stunning clarity, she explained dyslexia, a manifestation of a brain neurologically wired to learn differently that may affect up to 20 percent of the population — one in five children and adults. And she noted that approximately 80 percent of the schoolchildren who are diagnosed with learning disabilities may actually be dyslexic.

She took me by the hand and led me through the unfamiliar territory of learning disabilities, defining a path where before there had been only dead-ends and rocky roads. She pointed me — and my son — in the right direction to get the help he needed.

Because the school district really has no formalized instruction program geared to the specific needs of a dyslexic student — and a review of assessments over time proved he had made so little progress over so much time — school district officials eventually approved my son’s enrollment in the a particular reading program.

In the first week, it was obvious that something extraordinary was happening — and it was all good.

Each subsequent week during the intensive, four-hours-per-day instruction period, we met with one of his specially trained clinicians, a fellow dyslexic named Dana. She proudly showed assessments that indicated his daily progress, growing list of sight words mastered, and reading proficiencies reached.

After 180 hours of one-on-one instruction, extensive reassessment revealed his word attack skills — a fundamental requirement for reading competence — increased from 2nd-grade level to 8th-grade level. And his oral reading skills increased from 3rd-grade to 7th-grade level.

Retesting six months later revealed the reading gains had held steady. There are still a few areas of reading weakness that keep his total reading ability a bit below grade level — and need to be addressed — but his reading skills have so significantly improved he can be considered a competent reader for the first time in his life.

On occasion, he even picks up a book and reads for fun.


Shawna - posted on 11/02/2010




I commend you for working so hard for your sons best interest. I have a friend and her sister who were diagnosed as dyslexic. Her sister wasn't diagnosed until high school and luckily they tested my friend at the same time. Thanks for posting such important information!!

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