Three years ago, Frieda Tresvan stumbled upon a Facebook video describing symptoms that perfectly matched her son.
Antonio struggled to grasp the sounds letters make. He could write only about half the letters in the alphabet. He had fallen behind his peers in the second grade in the Kansas City, Kan., school district.
She suddenly suspected he had dyslexia.
But while experts say up to 1 in 5 people could have the learning disability that hampers the ability to read, the district never mentioned the possibility.
Sign Up and Save
Get six months of free digital access to The Kansas City Star
“I expected that someone would say, ‘This is what this is,’” Tresvan said. “But it never came up.”
Across the country, parent-led movements have brought about dyslexia laws that require screenings, teacher training and support specifically for dyslexia. But Kansas is one of a handful of states in the nation that does not have such mandates.
As a result, advocates and parents have told The Star that dyslexic kids in Kansas experience a patchwork of support, depending on where they go to school.
“It’s school by school. It’s principal by principal,” said Jennifer Knight, who is the parent of two children with dyslexia and founded Dyslexia Help KC, a company that helps parents advocate for special education kids. “It’s not district-wide.”
But now a new state task force is researching ways to best help students with dyslexia. Its findings are expected in time for the Kansas Legislature’s 2019 session.
Tresvan hopes any changes aren’t too late for her son, who was finally diagnosed with dyslexia two years ago by a specialist at Children’s Mercy Hospital.
This fall, Antonio will enter fifth grade reading at the level of a first-grader.
Antonio has been enrolled in district programs since he was a toddler, and the district had quickly identified other learning delays.
But during the 2015-16 school year, when Tresvan emailed multiple people in the district about getting her son tested for dyslexia, she says she received no responses.
So in 2016, Tresvan took Antonio to Children’s Mercy, where a speech language pathologist conducted a four-hour evaluation and concluded that Antonio was indeed dyslexic.
Tresvan was ecstatic, because she knew there are proven methods to help dyslexic kids learn to read.
“You leave thinking, ‘I have a golden ticket. This is the answer that’s going to open all the doors,’” Tresvan said.
But a dyslexia diagnosis didn’t lead to the support she thought he needed. She was just beginning to navigate a tricky, contentious and inconsistent educational landscape for dyslexic kids and their families.
In Kansas, school districts are not required to recognize dyslexia as different from other learning delays. Nor are they required to screen children specifically for dyslexia. Even after a diagnosis, school administrators, advocates and parents sometimes disagree on the most efficient and legal way to support dyslexic schoolchildren.
This past spring, state Reps. Shelee Brim and Tom Cox, both Shawnee Republicans, introduced a bill that would have required schools to screen children for dyslexia.
Missouri passed a similar law in 2016, requiring dyslexia screening for children as well as dyslexia training for teachers. The law kicks in this school year.
The Kansas bill was opposed by some educators who think districts are already effectively identifying reading and spelling disorders.
By the end of the session, Gov. Jeff Colyer signed an amended bill that created the task force studying “evidence-based practices” specifically for dyslexic students.
“The task force represents hope that we’re going to help determine the appropriate strategies to identify (dyslexic) kids early on,” said David Hurford, a Pittsburg State University psychologist and researcher who specializes in dyslexia and is serving on the task force.
That’s a goal that advocates say is crucial as dyslexia issues in school districts continue to grow.
When Children’s Mercy started to test for dyslexia a little more than a decade ago, just two staff members were needed to handle a few evaluations a month.
Today, eight speech language pathologists conduct 50 to 60 evaluations a month. At the end of July, the department was scheduling appointments into October.
As more people become aware of dyslexia and ways to address it, more and more parents are seeking out evaluations. But because schools don’t explicitly screen for dyslexia, children are most likely to get a diagnosis from an outside psychologist or speech language pathologist working with a student already showing signs of reading difficulty.
“In Kansas City, we do a ton of evaluations,” said Chris Scranton, a speech language pathologist at the hospital. “We are probably where most people are headed. It’s definitely grown over time.”
Many people wrongly think that dyslexia involves reading backward or interchanging certain letters. But dyslexia is not a visual disability but a phonological one. Students who are dyslexic struggle to connect sounds to letters, and as a result find reading, spelling or recognizing words difficult.
A child who is not dyslexic understands that “cat” without the “c” is “at,” Hurford said. A child with dyslexia would likely not understand the question.
“Neurologically their brain has processed that information differently,” Hurford said. “They aren’t able to grasp that words are made of sounds.”
The disorder, which is thought to be genetic, exists on a spectrum. Some with dyslexia struggle immediately and fall quickly behind in school. Others learn to compensate, and because their grades remain high they are not diagnosed until middle or high school, when they can’t keep up with workloads.
The issues are compounded further by the complexities of the English language, in which five vowels make 19 sounds, and the sounds that letters make are inconsistent — people don’t say “sa-ha” when they see the word “Shhh.”
Teaching methods known broadly as structured literacy intervention have proven successful. These methods typically incorporate the Orton-Gillingham approach, named for two researchers who discovered that multisensory techniques help dyslexic people analyze words.
But, as Tresvan learned, there’s no requirement that Kansas schools provide it.
“We just don’t have anyone who has been trained in Orton-Gillingham,” a principal wrote to Tresvan when she asked for this kind of curriculum. “I can appreciate that you are so concerned with Antonio’s slow progress.”
A Kansas City, Kansas school district spokeswoman said she could not comment because of student privacy laws and because Tresvan filed a complaint that is under review by the state Department of Education.
Tresvan said district officials had told her a curriculum they already had would be sufficient.
Tresvan waited to see if they were right. But in the two years since she shared his dyslexia diagnosis with the district, school records show that Antonio hasn’t made any improvement.
A question of training
Knight, of Dyslexia Help KC, is a licensed teacher with degrees in educational technology and child psychology. But she didn’t learn in school how to identify or support dyslexic kids.
So when her own child struggled to spell basic words, spent hours doing homework and started having major meltdowns in the Olathe school district, Knight says she missed the signs. It wasn’t until a private psychologist diagnosed her daughter with dyslexia that Knight understood why her then-second-grader had announced she hated school.
“I felt like a failure,” Knight said. “I felt like as an educator I should know what this is. I should recognize it. I should know what to do about it.”
Knight says that her principal purchased the appropriate curriculum for her daughter, and a teacher taught herself new methods to help.
Advocates say that the key lies in how teachers are educated. Most university programs lack instructors with expertise in dyslexia intervention, in how to focus on phonological connections, Hurford said.
“The major difficulty is that the people who are in the school system are not trained in the science of reading,” Hurford said. “It’s how to identify (dyslexia) and how to remediate. It’s not that teachers don’t want to do it. It’s that they don’t know how.”
Ann Kavanaugh, a dyslexia specialist and University of Missouri-Kansas City adjunct professor, says she has watched enrollment in her graduate class about dyslexia increase.
“They start by saying they haven’t had students with dyslexia,” Kavanaugh said. “By the second week of reading they have already identified students they have worked with or are working with who have dyslexia.”
Another obstacle: Because of the strict rules regarding how services for special education children are documented, school districts have historically been hesitant to use the word dyslexia, so much so that in 2015, the federal Office of Special Education and Rehabilitative Services had to officially remind districts that they were allowed to use the word.
Training isn’t particularly complicated, but it’s expensive and time-consuming, said Knight, who eventually became a licensed Orton-Gillingham tutor. With limited time and inadequate funding, she said, it would be difficult for districts to train mass amounts of teachers or for teachers to seek out that professional development on their own.
Recently, Kavanaugh said, she attended a conference in Colorado devoted to dyslexia instruction. The two-week program cost $900, and most educators there had paid out-of-pocket because their districts wouldn’t or couldn’t pay.
Still, in recent years, some school districts have found ways to bring dyslexia-specific training to educators. Hurford said he has traveled to districts including Olathe, Shawnee Mission and Blue Valley to host seminars for teachers.
Children’s Mercy also visits local schools, Scranton said, and shares an early childhood curriculum it developed, called Rhyming to Reading, that can help flag kids who might be showing signs of dyslexia.
Some schools already have incorporated structured literacy programs.
“There are definitely schools that are trained in using those types of programs and are using them,” Scranton said. “Then there are schools that aren’t using a structured literacy approach. It gives me some sense of relief when a parent says, ‘My school has this program and it uses structured literacy.’”
Blue Valley formed its own task force on dyslexia in January, said Jennifer Luzenske, the district’s director of curriculum and instruction.
But while Luzenske said she’s noticed an uptick in the number of students who are identified as dyslexic outside the district, federal law makes it unlikely for educators to get behind one singular course of action. Some dyslexic students might be best served remaining in a general education classroom with a reading specialist, Luzenske said. Others might require one-on-one intervention.
“A family doesn’t need to present us with a diagnosis,” she said. “We have the staff and the expertise to serve students with a wide range of needs, and we have been doing so.”
The cost of private help
Tresvan keeps a 2-inch binder of all of Antonio’s paperwork that she calls his “life.” She has invested time and money in teaching herself Kansas law. She says she is the quintessential example of a parent who started off as “trusting in the system” but transformed into a savvy advocate after years of frustration.
But her battle with KCK schools is one she knows many parents do not have the time, interests or ability to pursue, particularly in a district with 63 spoken languages.
Even Tresvan’s husband at times felt uncomfortable when Tresvan challenged the school’s authority. He wondered if her advocacy could hurt their child, she said.
When it became clear that the district’s interventions weren’t working on Antonio, Tresvan sought private help.
But tutoring costs up to $85 an hour, and many consultants required that parents buy into a contract that would guarantee the number of sessions over a matter of months. She explored transferring Antonio to Horizon Academy, a private school in Roeland Park for students with learning disabilities, but she couldn’t afford the $25,000 tuition.
Tresvan says she watched Antonio’s self-worth crumble.
“My brain doesn’t work right,” Antonio would tell her when he came home from school.
In April, Tresvan took her children to watch Colyer sign the dyslexia task force bill at Horizon Academy. For her, it represented hope for her child, and it also made her feel not alone.
Task force recommendations
Knight, a member of the task force, is working on a subcommittee that will examine how other states screen students for dyslexia.
“We’re just out to identify these kids quickly,” she said. “It’s not diagnosing. It’s, ‘Oh, OK, this is a red flag.’”
Most dyslexia laws require screenings of some sort in schools, but some have created additional mandates, such as requiring districts to hire professionals to solely work with dyslexic students.
Others mandate certain interventions for dyslexic kids, what accommodations they are eligible for in the classroom or dyslexia courses for those studying to be teachers. Dyslexia handbooks to guide parents or teachers have also been the product of such legislation.
Scranton of Children’s Mercy said she’d like schools to hire specialists in structured literacy methods.
“I would love that,” she said. “It would make me sleep better at night.”
Luzenske said schools think that the task force’s ideas could be helpful, but that school districts would likely be “nervous about a one-size-fits-all approach.”
“As I look at other states that have legislation, it’s been written in a way that gives districts choice, for an example choice in a screening tool,” Luzenske said. “Retaining the flexibility to do what’s best for each student is always in our best interests.”
This May, three years after her son’s diagnosis, Tresvan began working with Kavanaugh, who offers private tutoring to families at a reduced rate.
Antonio’s confidence was the first thing to improve, Tresvan said. Recently, Antonio asked his mother if he could try to read the “Captain Underpants” books. Overjoyed, Tresvan ordered the books overnight from Amazon.
She plans to continue with the tutor. But when classes begin again, she will once again meet with school officials to see if her son can receive this kind of support in school — for free.
“It’s an internal battle for me,” she says. “’The school should be doing this’ as opposed to ‘I’m just going to do this.’”