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Tuesday Willaredt knew her older daughter, Vivienne, struggled to read.

She tentatively accepted teachers’ reassurances and the obvious explanations: Remote learning during the COVID pandemic was disruptive. Returning to school was chaotic. All students were behind.

Annie Watson was concerned about her son Henry’s performance in kindergarten and first grade.

But his teachers weren’t. There was a pandemic, they said. He was a boy. Henry wasn’t really lagging behind his classmates.

So Willaredt and Watson kept asking questions. So did Tricia McGhee, Abbey and Aaron Dunbar, Lisa Salazar Tingey, Kelly Reardon and T.C. — all parents who spoke to The Beacon about getting support for their kids’ reading struggles. (The Beacon is identifying T.C. by her initials because she works for a school district.)

After schools gave reassurances or rationalizations or denied services, the parents kept raising concerns, seeking advice from teachers and fellow parents and pursuing formal evaluations.

Eventually, they all reached the same conclusion. Their children had dyslexia, a disability that makes it more difficult to learn to read and write well.

They also realized something else. Schools — whether private, public, charter or homeschool — aren’t always equipped to immediately catch the problem and provide enough support, even though some estimates suggest up to 20% of students have dyslexia symptoms.

Instead, the parents took matters into their own hands, seeking diagnoses, advocating for extra help and accommodations, moving to another district or paying for tutoring or private school.

“You get a diagnosis from a medical professional,” Salazar Tingey said. “Then you go to the school and you’re like, ‘This is what they say is best practice for this diagnosis.’ And they’re like, ‘That’s not our policy.’”

Recognizing dyslexia

It wasn’t until Vivienne, now 12, was in sixth grade and struggling to keep up at Lincoln College Preparatory Academy Middle School that a teacher said the word “dyslexic” to Willaredt.

After the Kansas City Public Schools teacher mentioned dyslexia, Willaredt made an appointment at Children’s Mercy Hospital, waited months for an opening and ultimately confirmed that Vivienne had dyslexia. Her younger daughter Harlow, age 9, was diagnosed even more recently.

Willaredt now wonders if any of Vivienne’s other teachers suspected the truth. A reading specialist at Vivienne’s former charter school had said her primary problem was focus.

“There’s this whole bureaucracy within the school,” she said. “They don’t want to call it what it is, necessarily, because then the school’s on the hook” to provide services.

Missouri law requires that students in grades K-3 be screened for possible dyslexia, said Shain Bergan, public relations coordinator for Kansas City Public Schools. If they’re flagged, the school notifies their parents and makes a reading success plan.

Schools don’t formally diagnose students, though. That’s something families can pursue — and pay for — on their own by consulting a health professional.

“Missouri teachers, by and large, aren’t specially trained to identify or address dyslexia in particular,” Bergan wrote in an email. “They identify and address specific reading issues students are having, whether it’s because the student has a specific condition or not.”

Bergan later added that KCPS early elementary and reading-specific teachers complete state-mandated dyslexia training through LETRS (Language Essentials for Teachers of Reading and Spelling), an intensive teacher education program that emphasizes scientific research about how students learn to read.

Missouri is pushing for more teachers to enroll in LETRS.

In an emailed statement, the North Kansas City School District said staff members “receive training on dyslexia and classroom strategies,” and the district uses a screening “to help identify students who may need additional reading support.”

Kansas has also worked to update teacher training. But the state recently lost federal funding for LETRS training and pulled back on adding funding to its Blueprint for Literacy.

Public school students with dyslexia or another disability might be eligible for an individualized education program, or IEP, a formal plan for providing special education services which comes with federal civil rights protections.

But a diagnosis isn’t enough to prove eligibility, and developing an IEP can be a lengthy process that requires strong advocacy from parents. Students who don’t qualify might be eligible for accommodations through a 504 plan.

A spokesperson for Olathe Public Schools said in an email that the district’s teachers participate in state-mandated dyslexia training but don’t diagnose dyslexia.

The district takes outside diagnoses into consideration, but “if a student is making progress in the general education curriculum and able to access it, then the diagnosis alone would not necessarily demonstrate the need for support and services.”

Why dyslexia gets missed

Some families find that teachers dismiss valid concerns, delaying diagnoses that parents see as key to getting proper support.

Salazar Tingey alerted teachers that her son, Cal, was struggling with reading compared to his older siblings. Each year, starting in an Iowa preschool and continuing after the family moved to the North Kansas City School District, she heard his issues were common and unconcerning.

She felt validated when a Sunday school teacher suggested dyslexia and recommended talking to a pediatrician.

After Cal was diagnosed, Salazar Tingey asked his second grade teacher about the methods she used to teach dyslexic kids. She didn’t expect to hear, “That’s not really my specialty.”

“I guess I thought that if you’re a K-3 teacher, that would be pretty standard,” she said. “I don’t think (dyslexia is) that uncommon.”

Louise Spear-Swerling, a professor emerita in the Department of Special Education at Southern Connecticut State University, said estimates of the prevalence of dyslexia range from as high as 20% to as low as 3 to 5%. She thinks 5 to 10% is reasonable.

“That means that the typical general education teacher, if you have a class of, say, 20 students, will see at least one child with dyslexia every year — year after year after year,” she said.

Early intervention is key, Spear-Swerling said, but it doesn’t always happen.

To receive services for dyslexia under federal special education guidelines, students must have difficulty reading that isn’t primarily caused by something like poor instruction, another disability, economic disadvantage or being an English language learner, she said. And schools sometimes misidentify the primary cause.

Tricia McGhee, director of communications at Revolucion Educativa, a nonprofit that offers advocacy and support for Latinx families, has had that experience.

She said her daughter’s charter school flagged her issues with reading but said it was “typical that all bilingual or bicultural children were behind,” McGhee said. That didn’t sound right because her older child was grade levels ahead in reading.

“The first thing they told me is, ‘You just need to make sure to be reading to her every night,’” McGhee said. “I was like, ‘Thanks. I’ve done that every day since she was born.’”

McGhee is now a member of the KCPS school board. But she spoke to The Beacon before being elected, in her capacity as a parent and RevEd staff member.

Dyslexia also may not stand out among classmates who are struggling for various reasons.

Annie Watson, whose professional expertise is in early childhood education planning, strategy and advocacy, said some of Henry’s peers lacked access to high-quality early education and weren’t prepared for kindergarten.

“His handwriting is so poor,” she remembers telling his teacher.

The teacher assured her that Henry’s handwriting was among the best in the class.

“Let’s not compare against his peers,” Watson said. “Let’s compare against grade level standards.”

Receiving services for dyslexia 

Watson cried during a Park Hill parent teacher conference when a reading interventionist said she was certified in Orton-Gillingham, an instruction method designed for students with dyslexia.

In an ideal world, Watson said, the mere mention of a teaching approach wouldn’t be so fraught.

“I would love to know less about this,” she said. “My goal is to read books with my kids every night, right? I would love for that to just be my role, and that hasn’t been it.”

By that point, Watson’s family had spent tens of thousands of dollars on Orton-Gillingham tutoring for Henry through Horizon Academy, a private school focused on students with dyslexia and similar disabilities.

They had ultimately moved to the Park Hill district, not convinced that charter schools or KCPS had enough resources to provide support.

“I felt so guilty in his charter school,” Watson said. “There were so many kids who needed so many things, and so it was hard to advocate for my kid who was writing better than a lot of the kids.”

So the idea that Henry’s little sister — who doesn’t have dyslexia — could get a bit of expert attention seamlessly, during the school day and without any special advocacy, made Watson emotional.

“Henry will never get that,” she said.

While Watson wonders if public schools in Park Hill could have been enough for Henry had he started there earlier, some families sought help outside of the public school system entirely.

The Reardon and Dunbar families, who eventually received some services from their respective schools, each enrolled a child full-time in Horizon Academy after deciding the services weren’t enough.

Kelly Reardon said her daughter originally went to a private Catholic school.

“With one teacher and 26 kids, there’s just no way that she would have gotten the individualized intervention that she needed,” she said.

The Dunbars’ son, Henry, had been homeschooled and attended an Olathe public school part-time.

Abbey Dunbar said Henry didn’t qualify for services from the Olathe district in kindergarten, but did when the family asked again in second grade. Henry has a diagnosed severe auditory processing disorder, and his family considers him to have dyslexia based on testing at school.

She said the school accommodated the family’s part-time schedule and the special education services they gave to Henry genuinely helped.

“​​I never want to undercut what they gave and what they did for him, because we did see progress,” Dunbar said. “But we need eight hours a day (of support), and I don’t think that’s something they could even begin to give in public school. There’s so many kids.”

T.C., whose daughters attended KCPS when they were diagnosed, also decided she couldn’t rely on services provided by the school alone. One daughter didn’t qualify for an IEP because the school said she was already achieving as expected for her IQ level.

In the end, T.C. said, her daughters did get the support they needed “because I paid for it.”

She found a tutor who was relatively inexpensive because she was finishing her degree. But at $55 per child, per session once or twice a week, tutoring still ate into the family’s budget and her children’s free time.

“If they were learning what they needed to learn at school… we wouldn’t have had that financial burden,” she said. Tutoring also meant “our kids couldn’t participate in other activities outside of school.”

Support and accommodations

Tuesday Willaredt is still figuring out exactly what support Vivienne needs.

Options include a KCPS neighborhood school, a charter school that extends through eighth grade or moving to another district. Outside tutoring will likely be part of the picture regardless.

Willaredt is worried that her kids aren’t being set up to love learning.

“That’s where I get frustrated,” she said. “If interventions were put in earlier — meaning the tutoring that I would have had to seek — these frustrations and sadness that is their experience around learning wouldn’t have happened.”

When Lisa Salazar Tingey brought Cal’s dyslexia diagnosis to his school, he didn’t qualify for an IEP. But his classroom teacher offered extra support that seemed to catch him up.

In following years, though, Salazar Tingey has worried about Cal’s performance stagnating and considered formalizing his accommodations through a 504 plan.

She wants Cal, now 10, to be able to use things like voice to text or audiobooks if his dyslexia is limiting his intellectual exploration.

Before his diagnosis, she and her husband noticed that every school writing assignment Cal brought home was about volcanoes, even though “it wasn’t like he was a kid who was always talking about volcanoes.”

When he was diagnosed, they learned that sticking to familiar topics can be a side effect of dyslexia.

“He knows how to spell magma and lava and volcano, and so that’s all he ever wrote about,” Salazar Tingey said. “That’s sad to me. I want him to feel that the world is wide open, that he can read about anything.”

This article first appeared on Beacon: Kansas City and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.

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