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Decoding Dyslexia

December 22, 2019 - 00:00
Posted in:

Son’s diagnosis, wife’s startling revelation sparks lawmaker’s new mission

  • Decoding Dyslexia
    FAMILY TIES — Rep. Mike Sanders and his wife Nellie, in this Christmas card photo with sons Davis and Walker, are sharing their own family’s struggle with dyslexia to help push state education reforms to help other families. [Photo Provi

It’s hard to say which came as more of a shock to Mike Sanders as he and his wife Nellie sat across from a school official two years ago.

The news that his obviously bright but academically struggling son had dyslexia.

Or the sight of his wife collapsing into uncontrollable sobs in the chair next to him.

“I was totally blindsided by her reaction,” Sanders said. “I had no idea what brought it on.”

“When I was getting the results of our child’s tests, I bawled my eyes out. I couldn’t even hold it in,” Nellie said. “It was so traumatic – like reliving something I had squashed away.”

What Nellie, a poised, articulate, gregarious, college-educated professional who serves as chief philanthropy officer at Center of Family Love had “squashed away” was the fact that she also is dyslexic.

It’s a fact so fraught with childhood trauma and feelings of degradation, shame and inadequacy that she shared it with no one.

Not her closest friends.

Not her boss at the Center of Family Love.

Not even her husband of nearly 12 years.

And no one would have reason to even suspect.

Thanks to technology and her own tenacity, Nellie is now a fluent and voracious reader.

As soon as she learns she shares a common interest with someone, she is more likely than not to recommend a favorite book on the subject.

But even a couple decades of personal and professional accomplishment hasn’t wiped out the first 12 years of her education experience, marked with painful and almost daily reminders that she just didn’t measure up.

Struggle Started Early

“One of my earliest memories is when I was in first grade and came home from school and my parents asked me to come sit down and talk to them,” she said. “They told me I was going to be repeating fi rst grade.”

At that point, Nellie loved going to school. She described herself as “a social butterfly, the most outgoing kid in the class.”

She didn’t understand why she was the only person in her grade who wouldn’t advance to second grade and the explanation – that she was a daydreamer who didn’t pay enough attention to her lessons – was no explanation at all.

“It was one of the most excruciatingly difficult days of my life,” she remembered.

“At the age of 6, that began a lifetime in the education system of pouring salt on wounds that can never be fixed because schools don’t accommodate those who have neurological differences,” she said.

Dyslexia frequently has a hereditary component, which was true in Nellie’s house – where her father, brother and sister all faced the same struggles to different degrees.

Without an actual diagnosis (“It was the 80s – no one actually applied the word dyslexic, but I was textbook.”), Nellie was lumped into a general category of “learning disabled,” with no attempt to find an individualized style of learning that would accommodate her differences.

She also struggles with two common dyslexia companions, dysgraphia – an inability to write with clarity or spell correctly, and dyscalculia – an inability to reason through math problems.

But her reading deficiency created a challenge in every subject and also was a red fl ag to the rest of the students that she wasn’t as “smart” as they were.

The most mortifying is being called on to read out loud, when nervousness compounds the visual confusion of letters jumping on the page, switching places or identities (a lowercase d can fl ip into a b, flop into a p or somersault completely into a q) and landing in an indecipherable jumble.

“I would make up any excuse I could think of not to have to stand up and read,” she said. “It was humiliating and I felt so stupid.”

Finally, in the sixth grade, Nellie was subjected to a week-long battery of assessment tests, which showed good news.

Her innate intelligence level – the ability to think abstractly, decipher complex situations and understand the big picture, what Nellie calls her “street smarts” – was off the charts.

But all Nellie heard was the bad news – she was reading at a fourth grade level.

“That broke my heart because once again I felt different from everyone else,” she said.

One thing she did develop was an incredible work ethic, “since I felt like I had to work 100 times harder just to kind of keep up.”

The World Opened Up

But Nellie graduated high school and even with test scores she described as “atrocious,” she managed to get into Salve Regina, a small Catholic liberal arts college.

That’s where she fi nally caught the attention of the fi rst educator who looked past her learning deficiencies – she was already on academic probation because her delayed reading skills made it hard to keep up with textbook assignments – and see her real gifts.

“I was in a history class, a subject I loved, along with politics and literature, even though I couldn’t read all that well,” she said. “The professor called me up after class and said I think you really have gifts and I want you to go through the American Studies program.”

Under the professor’s mentor-ship, the program allowed Nellie to chart her own educational goals to reach her professional goal, which was a New York City advertising career.

And without mentioning her learning challenges, the professor also quietly made accommodations, giving her tests that weren’t timed and getting a foreign language requirement waived, among others.

After graduation, Nellie got a job working for publishing giant Conde Nast, whose magazine holdings include Vogue, Glamour, Architectural Digest and others.

Within a year, she successfully competed against Ivy League graduates to win a promotion to an intermediate level sales job.

“I had to do a mock sales pitch to convince them to buy an ad,” she said. “Afterwards, they told me it was the most awful sales pitch they ever heard, but they saw something in me and decided to give me the job.”

She trained for six months and then three months later, Nellie had grown sales in fractional advertising by 130% and was promoted to selling full-page ads, and also was the youngest person selling ads for the publisher, at age 23.

It was Nellie, the polished career professional, who met and eventually married Mike Sanders, working in the White House at that time as a staff member in the Bush Administration, and moved with him back to Kingfi sher.

Day of Reckoning

After the meeting with professionals in their son’s school offi ce, Nellie had to come clean about her dyslexia.

“I had to finally own it and discuss it openly,” she said. “I had to do that for my son to help him understand that a dyslexia diagnosis should not be a source of shame and that we would fi gure it out together.”

It was a steep learning curve for Mike, whose superfi cial grasp of dyslexia – that it means you read words backwards or fl ip some letters around – was not untypical.

“My son amazed us in so many ways – he could watch a football game at age 3 and months later still describe what happened in key plays – that it made his inability to read or write that much more frustrating to me,” Sanders said. “He would read a word fine and then two sentences later have no idea what the exact same word was.”

Expensive testing demonstrated the degree of their son’s problem – more severe than his mother’s – and also identifi ed his strengths.

An educational professional was brought in to design a mediation program geared toward their son’s unique neurological wiring and style of learning, a private service for which the Sanders family also pays out of pocket.

In two years, the difference is startling.

“I couldn’t believe it the day he first asked me to listen to him read a book. He picked up the ‘Cat in the Hat’ and read it perfectly,” he said. “Nellie wasn’t home so I actually videoed it so she could watch it later.”

But then Mike and Nellie started thinking about the tens of thousands of other Oklahoma students struggling with dyslexia (estimates are as high as 15-20%) whose haven’t even been identifi ed and whose parents could not afford intervention programs.

A Legislative Solution?

That’s when Rep. Mike Sanders went to work, starting with educating himself.

“Two years ago, I thought dyslexia was just reading things backwards, but it’s not a learning disability, you just learn things differently,” he said.

“I’ve read and listened to experts and listened to kids and during this journey, I’ve had so many teachers locally as well as across the state who reached out to me and said they can see when something is wrong with a child struggling to read, but they’ve never been taught how to recognize dyslexia.”

In an effort to encourage their son, the Sanders family also has researched dyslexics who have achieved remarkable successes and have discovered some startling statistics.

An estimated 45% of self-made million- and billionaires (including Steve Jobs) are dyslexic, along with at least two NASA rocket scientists and British military intelligence actively recruits dyslexics for their unique abilities to visualize in multidimensions.

Between them, Mike and Nellie can rattle off dozens of familiar names:

Albert Einstein.

Kiera Knightley.

Orlando Bloom.

Steven Spielberg.

“It makes you wonder how many amazing, untapped brains that are out there,” Sanders said. “All those gifted intellects that might be finding the cure for cancer or building the first rocket to Mars, but that incredible talent is not being unlocked.”

Working with dyslexia advocates and educators, Sanders drafted legislation adopted this year that he said takes the fi rst small step toward addressing the problem.

Beginning with the 2021 school year, House Bill 1228 will provide professional development for teachers to help them recognize students with dyslexia.

Sanders also helped write a dyslexia handbook, a digital resource available on the state Department of Education website to help parents and teachers identify and address the problem.

In 2020, Sanders’ last year in office before term limits ends his legislative career, he hopes to draft legislation that goes farther – providing funding for screening to correctly diagnose students identified by their teachers as possible dyslexics.

His work has drawn the interest of other legislators, some of whom have their own experience with dyslexia, whom he hopes will carry on the mission once he is out of offi ce.

“Research shows that if we can identify and remediate these kids by the third grade, they can be successful,” he said.

“There’s so much technology that is out there that can help once we know that dyslexia is the problem, and most of it is free,” Nellie added.

She demonstrated a phone app that will read text aloud just by snapping a picture of a printed page.

“I have a whole folder of apps on my phone that can provide assistance and I downloaded all of it for free,” she said.

The problem dysgraphia creates in getting thoughts written down can be remedied by using a keyboard as the writing mechanism, rather than a pencil or pen, she said.

Dyslexics also can be taught coping mechanisms at an early age, rather than learning them the hard way as Nellie did as an adult – or never learning them at all.

Sanders – a fi scally conservative Republican – is already girded for the battle he knows will erupt over bills to fund dyslexia screening and remediation services.

“My argument is, we’re already spending that money at the back end – housing juvenile delinquents and prisoners that we failed to educate,” he said.

A Grim Alternative

For every success story of dyslexics who were identified, remediated and then learned to maximize their unique brainpower, there are dozens more whose lives took different paths.

“Think about it. If you and everyone else believes you can’t learn because you’re just stupid and you’re possibly being raised by a parent who also has been held back by undiagnosed dyslexia, you’re a kid who probably won’t finish high school and will start looking for validation wherever you can find it,” Nellie said. “And that’s a situation that will likely land you in prison.”

That’s not just idle speculation, Mike said. The State of Texas has actually tested its prison population for dyslexia and found that 60% of the inmates have the diagnosis and more than 80% of that group are high school dropouts.

“You can’t talk about prison reform and criminal justice reform without talking about what we could be doing at the grade school level to set them on a different path,” Sanders said. “That’s where we need to be spending the money.”

Nellie pointed out that Oklahoma’s problem is not for lack of good teachers, but for failing to equip those teachers with the skills to identify, the means to test and the tools to remediate kids with dyslexia.

“We have the ability to educate children who are not learning now just by switching it up – identifying kids with dyslexia and meeting every child where they are.

“Other states are doing that with great success and I’m so proud of Mike for the work he’s doing in Oklahoma so that we can be one of them.”

And Nellie’s found freedom in letting her own secret out of the box and the understanding and support she’s received in return.

“My boss (Debbie Espinosa, CFL’s CEO) has been so great,” she said. “Now I can read something aloud to her over the phone and never feel uncomfortable when I stop and say ‘hold on, I need to look this word up.’

“Dyslexia is always going to create challenges for me, but I want every kid to know that it doesn’t have to hold you back.”