Reading the signs: Parents advocate for District 65 dyslexia diagnosis, reading support


Illustration by Gemma DeCetra

Two District 65 parents said their children didn’t receive the evidence-based reading support they needed.

Aviva Bechky, Assistant City Editor

M., an Evanston/Skokie School District 65 parent, started seeing signs of dyslexia in her youngest child Peter in preschool. Peter struggled to identify and match sounds with letters, but his kindergarten teacher said he could catch up later.

M., who asked to use her first initial and a pseudonym for her child due to privacy concerns, said she was looking for signs because Peter’s father had dyslexia, an unexpected difficulty learning to read. When Peter was in first grade, his teacher suggested to M. that she begin the process to get an Individualized Education Program for Peter.

That year, Peter started receiving small group and reading specialist support. But throughout his education at Orrington Elementary School, M. said Peter — now 11 and at Haven Middle School — still wasn’t receiving the instruction he needed.

“It was like a full time job for me to try and advocate for my child to get the services that he needs,” M. said. “And he still wasn’t given those services.”

In District 65, some parents say the yearslong lack of phonics-focused reading programs impeded their dyslexic children’s literacy and mental health — and they say a curriculum shift would benefit all students. Now, the district is searching for a new curriculum and training more teachers in evidence-based reading interventions. But some children have already been left behind.

Aligning curriculum and science

Zafiro Papastratakos, a former District 65 parent, said her son struggled with reading from a young age. Despite his difficulties, she wasn’t aware the district’s curriculum was scientifically outdated until he was in third grade, when she encountered a reported podcast on systemic issues with reading education.

“I heard what she was saying and I recognized what she was calling as inappropriate instruction,” Papastratakos said. “I recognized it in the ways my son was being taught to read.”

Many schools use a three-cueing method that encourages readers to use context clues to guess an unfamiliar word’s meaning. But developmental science Prof. Elizabeth Norton said prevailing science promotes phonics-based instruction, where students learn to read by breaking words down into sounds and letters.

“What is wrong with three-cueing is that it doesn’t give enough of a toolbox to decode new words,” Norton said. “Having that approach of being able to systematically attack a new word is better than being able to just guess.”

The Orton-Gillingham approach and Wilson Language Training, which offers multiple programs that engage students’ senses to teach reading, are both research-based.

While it may be particularly necessary for students with dyslexia, Norton said high-quality phonics instruction is the best method to reach all kids.

District 65 currently uses an updated version of the Lucy Calkins curriculum, which traditionally used a three-cueing approach. Assistant Superintendent of Curriculum and Instruction Stacy Beardsley said the district added more phonics about a year and a half ago and is now looking for a new curriculum.

Support for struggling students

District 65 offers tiered interventions for students in addition to individualized support for students with IEPs and 504 plans. Donna Cross, District 65’s director of multi-tiered system of supports and social emotional learning, said those interventions often use small-group phonics-based approaches.

Romy DeCristofaro, the assistant superintendent of District 65’s student services, said she’s heard parental concerns that some students didn’t receive proper early intervention.

“We’ve been working really hard as a district to make sure that we are responsive and catching kids earlier,” DeCristofaro said. “I think we are doing a better job over the last couple of years.”

The district now has Wilson-trained or certified staff in every building, a recent change, DeCristofaro said. If students continue to struggle, she urged families to problem-solve with their schools.

Starting in first grade, Papastratakos said her son received level three interventions, the highest intervention that doesn’t involve a specialized plan.

Papastratakos got an outside diagnosis for her son’s dyslexia at the end of third grade. When she met with the school, she said the district did not have adequate data or review to guide its decisions to continue systems she felt were “clearly not working.”

In fourth grade, Papastratakos said her son was placed in a Wilson program by the district for half an hour twice a week. She pulled him out of the program a few months in.

“The Wilson (instruction) that they offered him had been provided to him, but it was ineffective because the teacher didn’t really have the ability to manage the class,” Papastratakos said.

If the school had given him proper instruction, Papastratakos said her son wouldn’t have needed remedial instruction or undergone the same level of emotional distress.

M. also faced challenges getting evidence-based instruction. 

Though she requested multiple times that Peter receive support from an Orton-Gillingham-trained teacher, she said he never did.

“Any intervention that he was ever offered by the district was not an intervention that is evidence-based to be effective,” M. said.

Papastratakos and M., however, both said some individual teachers within District 65 were largely supportive despite a lack of training.

Peter agreed. 

“The teachers gave enough attention,” he said. “The other curriculum that they teach was off of what I needed to learn.”

Dyslexia screening and diagnosis

District 65 began offering universal dyslexia screening through Measure of Academic Progress Reading Fluency in the 2020-2021 school year, but used other universal screeners prior to that, according to Beardsley and DeCristofaro. Beardsley said the district works further with students flagged through MAP testing.

M., however, got an outside evaluation confirming her son’s dyslexia. She said the district still didn’t put the diagnosis in his IEP to ensure he received support.

“(If) they actually said, ‘This child has dyslexia,’ then they legally are obliged to offer support, which they don’t have,” M. said.

DeCristofaro said an outside diagnosis would generally be recorded in a document like a 504 plan or IEP. But because such diagnoses often require parental awareness and access to outside evaluation, Norton said students of color are likely underdiagnosed. Dyslexia diagnoses also often overlook bilingual students, she said.

In the 2019-2020 school year, 69% of District 65 students performed at or above grade level in English Language Arts, but the district saw significant disparities. Only 43% of Black students and 48% of Hispanic students met this benchmark compared to 90% of white students. Additionally, only 23% of students with an IEP performed at or above grade level in ELA. 

Beardsley declined to provide numbers for districtwide dyslexia diagnoses. DeCristofaro said the District 65 system is designed to catch and support all students, regardless of diagnosis.

“​​A child doesn’t need a dyslexia diagnosis to get the instructional support,” DeCristofaro said. “Most of the outside diagnoses that we get … are predominantly coming from white families.”

Starting this school year, the district also began using MAP to screen in Spanish, she said. District 65 also started offering Esperanza, a multi-sensory phonics approach to Spanish reading education, this year.

Leaving the school district

Three weeks after Papastratakos’ son returned from remote learning with a new IEP last February, he came home and said school felt like a “fog.” Papastratakos returned him to remote learning and enrolled him in a literacy-focused school the next year.

“I felt really happy because I knew that wherever I was going to go next was somewhere where I was going to understand the learning,” her son said.

While she said his reading has improved, the cost of private school takes up to 70% of her income.

M. also pulled Peter out of Orrington during the COVID-19 pandemic, enrolling him in Redwood Day School. The Rogers Park school tailors education for children with dyslexia. Six months there, she said, drained her savings.

Though Peter has returned to public school, M. said she thinks he needs at least another year of private education. She said his current supports mainly focus on his ADHD and educational supplements like text-to-speech.

“We can’t afford to send him to Redwood for two years,” she said. “But if we’re gonna have to send him, we want to send him in eighth grade, so they can sort of catch him up for high school.”

Beyond financial concerns, DeCristofaro said District 65 also offers other advantages. 

“You might be giving up some of the great science, social studies and other types of fine arts curriculums that we have here in District 65,” she said. “You might be giving up certain types of inclusive experiences.”

Coming change

As the district expands the number of teachers trained in evidence-based methods, Beardsley said teachers are also testing new materials in English classes to evaluate during next school year.

Meanwhile, Papastratakos is working on advocacy from the outside. She began Dyslexia Connection of Evanston to help dyslexic kids meet each other and discuss their strengths.

She’s pushing for change, including through a lecture series on dyslexia and reading. However, Papastratakos said she won’t return her son to District 65 schools as long as she can afford to keep him in private school.

“I want him to go to a school where I feel confident that they will execute the program that we put in place,” she said. “I do not feel that way at the public school at District 65 at all.”

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Twitter: @avivabechky

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