Parents clamor for more dyslexia support, recognition
Tara Mixon was so excited about the three new Oregon laws aimed at helping kids with dyslexia that she moved back to Portland last November.
But now that the mother of three is here, she's nervous about how all the new screening and supports will actually roll out.
"I want to believe, I really want to believe," Mixon said, but added that despite kind and pleasant staff, her son, Jack, hasn't yet gotten the accommodations she feels he needs.
She is worried about continuing a generational cycle of this hereditary condition.
"I saw the school system fail my husband, and my brother-in-law, and my stepdaughter," she said.
Mixon realized Jack was dyslexic four years ago when — as a kindergartner in Las Vegas — his self-confidence plummeted as he struggled to read. She pulled him out to homeschool in first grade but has enrolled him this year as a fourth grader at Woodmere Elementary in Southeast Portland.
As she waits for Jack's Individual Education Plan meeting, Mixon said she worries that his self-confidence is slipping away again without accommodations.
Mixon's daughter, Starla, is in kindergarten at the same school.
Thanks to the new laws pushed through by parent advocates, Starla and the rest of Oregon's newest public school students will be screened for reading difficulties in October. A follow-up test in the spring is supposed to flag children at risk of dyslexia. Some studies have listed the percentage of students with reading difficulties as high as 20 percent. That could mean thousands of children statewide could be newly eligible for extra help.
Another new Oregon law ensures that at least one person in a K-5 school has training on what dyslexia is. But Mixon, who's worked in educational advocacy, isn't convinced that it will result in much support for students.
"My daughter, what if she's identified this year? What help is she going to get?" Mixon said. "Having someone in the school that knows about it, I don't think it's really going to help."
What is dyslexia and what can be done?
First, some background.
Dyslexia is an umbrella term for a range of brain differences that make reading difficult. Some people see reversed or mixed up letters; others feel like the words are swimming on the page; and yet others imagine words that aren't actually there. There are lots of other ways it can manifest, too. It's all about how the brain interprets the messages it receives from the funny squiggles you are, at this very moment, turning into words with meanings.
Caught early, young students with dyslexia have a better chance of catching up or finding ways around the challenges. But they have to be presented the material in a way their brains can process.
Jennifer Pultz, a Portland mother who became an Orton-Gillingham practitioner after her son's dyslexia diagnosis, said there are about nine different methods that have been scientifically proven to work. None of them, she says, are formally in use in Portland Public Schools.
(PPS officials were not able to comment on this story before publication.)
The methods are available all over town — for a price. Mixon said after she had to quit her job to homeschool Jack, their income was such that they can't afford private tutoring.
"You can feel like you're failing your kid when you can't pay $50-$60 per hour for a tutor," she said. Even the knowledge that such programs exist — and other tips and tricks to addressing dyslexia — "That's an affluent thing."
In an attempt to equalize the response to dyslexia, Oregon passed those three new laws. One requires the screening that starts this year for children in kindergarten — or in first grade, if that's their first year at a public school. The second law mandates that at least one teacher in a K-5 school have six to 30 hours of training on dyslexia. Finally, teacher prep programs in Oregon are now required to teach teachers about dyslexia.
So the laws have changed. But that doesn't mean the schools are ready.
Specific interventions needed
Parent advocates, some of whom came out in force to a Sept. 4 Portland Public Schools board meeting, have a number of complaints that the new system is still flawed.
"There's no plan in place with what to do with those kids once they're identified," Mixon said.
Kate Deane, a Northeast Portland mother, said her daughter struggled for five years before they got a private diagnosis of dyslexia.
"This is not an uncommon experience," Deane said. Now in sixth grade at Roseway Heights Middle School, her daughter still doesn't seem to be getting what she needs.
"It's hit and miss. Many teachers aren't trained," Deane said.
Distrustful of the school system that failed to identify her daughter, Deane echoed the concern of many parents that schools will not actually notify parents of the results of the kindergarten screening.
The law does not explicitly require them to. However, the Oregon Department of Education released guidance Aug. 30 that states close communication with families is always best practice and outlines what should go in a notification.
Pultz, the Orton-Gillingham practitioner, said the interventions she's seen proposed are just more of the same style of instruction, often called "whole language." What most dyslexic children need is phonics-based, multisensory, multi-stage cumulative instruction — breaking down each word by sounds.
"It's the 'wait to fail' model," she said. "They just think: 'Oh, they'll just catch on.'"
Pultz, whose father was a district superintendent, believes few teachers and school administrators struggled to read as children, and therefore don't really get it.
"Trying to get institutions to change the way they do things is like moving a mountain," she said.
Pultz also believes that unaddressed dyslexia can impact people so profoundly as to literally rise to the level of life and death.
If she had been told in kindergarten, as many Oregon parents will this year, that her son was dyslexic, she said, "his life would be dramatically different.
"Boys get their self-esteem by what they can do," she said. "Girls get their self-esteem from whoever they associate with."
Some studies show a higher incidence of dyslexia in boys than girls, though the exact ratio is a matter of debate. Other studies show that children of color and those without means are much more likely to go undiagnosed.
"This is a civil rights issue," Pultz said.
'Hopeful but skeptical'
The inability to read well by third grade is correlated to a number of social costs. Students with reading deficits — either through dyslexia or other factors — are more likely to fail, drop out or go to prison.
A 2000 study found about half of inmates at a Texas prison had trouble decoding words and two-thirds struggled with reading comprehension. Mixon says her husband, who is dyslexic, works at a prison and see many inmates with reading trouble or who are functionally illiterate.
Annalise Cummings knows that a life of crime is not the only path for students with dyslexia. Dyslexic people also tend to be intelligent, unconventional thinkers who become entrepreneurs or artists.
Now a physics major at Portland State University, Cummings said coming up through Portland Public Schools was rough for her.
"PPS was a real struggle to try to get through with undiagnosed dyslexia," Cummings said. "A real struggle. A lot of anxiety."
She sought out the testing herself when she learned what dyslexia was — but by then she was a senior at Cleveland High School who had struggled for years.
The 2013 graduate is "absolutely" glad that Portland children will be identified earlier. But she also worries about all the students, first grade and up, who still won't be.
"Hopeful but skeptical" is how Cummings describes her feelings. "It really comes down to how the person who is implementing the program uses the tool to further the kids' understanding."
Cummings said not just the right curricula are needed, but also empowering social messaging and accommodations, like assistive technology.
Teachers, she said, need to highlight students' "strengths to build up their weaknesses, rather than just focus on the weaknesses and get those up to 'normal.'"
"It is what it is," Cummings said of her experience with dyslexia. "I don't regret who I am today, but I do want to do what I can to prevent other kids from having to experience that."
The language of reading
Professor Julie Esparza Brown is a Portland Public Schools board member and an expert on the nexus between special education needs and English language learners. Brown says research she is conducting through Portland State University is finding evidence that the interventions that work for kids with dyslexia also work for those who are learning English at school.
Systematic, explicit instruction — usually phonics — works for both groups, whereas the current model — often called whole language — depends on the group of children who can recognize words at a glance. For these students, it's usually enough to expose them to lots of interesting books at their reading level.
"There is a real philosophical divide across the fields in education in terms of what is effective reading instruction and what's engaging, also, for students," Brown said. "For me, if we provide the most beautiful literature in the classroom — and it's culturally relevant — what is the benefit if the student can't read independently?"
Interestingly, Brown says there is a higher rate of students diagnosed with dyslexia in the English-speaking world than in other places.
Languages such as Spanish and Italian have fewer irregularities, she said. English words are complex, with different sounds and verb conjugations.
And other languages, like Russian and Japanese, have letters that only ever make one sound, making them easier written words for young brains to grasp.