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A jigsaw puzzle that has phonemes spelling out the word dyslexia.
(Ross Brenneman
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LAist)
For People With Dyslexia, Support Requires Time Or Money, Or A Lot Of Both
Addressing dyslexia can be a cause of exhaustion and isolation for those who have it, and for their supporters.
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In a special series this summer, the LAist education team investigated how California's education system addresses dyslexia — from early childhood to college to adulthood.

Our six-part series covered the science of dyslexia, screening, practice, policy, and the transition to college and careers. There were a lot of other things our team learned along the way.

But one of the main things we heard was the importance of resources — the time required to talk to district administrators and principals and teachers, and the money it can take to get an assessment that a district might never otherwise offer.

We sat down to talk about some of the points that didn't make it into our series or that deserve extra emphasis.

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Participants:

This discussion is edited for length and clarity. Ross Brenneman, education editor, is asking the questions.

ABOUT THIS SERIES

Ross: We put out a call asking people to share their dyslexia stories. What were the things that you heard most often from people — what really stood out?

Adriana: What I read the most consistently was about extreme self-esteem issues among students with dyslexia — a lot of invalidating tendencies from school districts and from teachers and from administration. We've seen how expensive and how important it's been for students to just get help outside of school, if they can afford it, like, really expensive tutoring being what's necessary. The fact that there are very few free resources for folks who can't necessarily afford those tutoring sessions.

And also just like, an overwhelming amount of really passionate people, that so many people wrote so much and so many people wrote in like, I just didn't know how prevalent and important it was.

I think that that's a big piece too, is empowering young people to be like, ‘there's nothing wrong with me, I need support for the education that I deserve.’
— Julia Barajas, community engagement reporter, LAist

Mariana: I talked to one of our respondents, her name is Herlinda Braun. She was in Seal Beach, and she's about 80 years old, and she was never formally diagnosed with dyslexia. And she still feels like these challenges are challenges that have followed her through her entire life. She told me that it changed how she taught her own children. She focused a lot on phonics because she didn't want them to go through the same struggles that she had with reading, she wanted them to succeed where she had had challenges.

Even though she lacks a formal diagnosis, this is real. And she knew that because it had shaped her life.

Ross: Robert, as you talked to many adults with dyslexia, does that echo what you heard? How have people managed their dyslexia after school, especially when they may never have gotten it addressed while in school?
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Robert: One of the biggest things I think I found was just the fact that people do go their whole lives without ever getting screened, or diagnosed. So it's always like this, this hunch, or maybe somebody gets informally diagnosed. The guy in my story is 28 now, and the end of the interview with him was — “Where can I go to get diagnosed? Because I'd love to, you know, go back to school.”

The other thing, I guess, that came up that didn't make it into the story, but it was an eye opener to me was, there's a woman whose family calls her ‘The Dyslexic Whisperer.’ The battle — it wasn't in an L.A. County school district — but how much she had to go to battle to get her kids the instruction that they needed. At one point, she was telling me that she homeschooled her child, because she just couldn't get [what they needed] in the school district where they were.

Kyle: There are so many parents who feel like they have to fight the system. And one of the things they have to fight the system for is a neurobiological, psychological assessment of their child having dyslexia. And, you know, we talked to scientists, and we got into the nitty gritty of like, how does like dyslexia work? And what are the brain functions, the connections that aren't made that normal typical readers have? And those are interesting to an extent but a lot of that scientific gray area is a little bit immaterial to the essential question for a teacher, which is, 'is this child at risk of having dyslexia?' The fact that those screening tools are not always being widely embraced is, I think, an interesting disconnect.

Ross: We’ve already touched here on two disconnects, one between research and practice, and one between schools and families. Let’s talk more about the latter one. We’ve heard from a lot of people who say they have had to pay a lot of money for a specialist outside of their child's school district to say that their child has dyslexia or is at risk of dyslexia, and then bringing that information to the district and saying, ‘See, we're not deluded, now can you do something about this?’

Mariana: We talked a lot about screening, because that's been the go-to policy solution in a lot of states. And something that we learned in this reporting is that that's only part of the solution. Because if educators and school districts are not equipped to then meet that child, where they are in terms of how they need to be taught to learn to read, then a diagnosis, no matter how strong, doesn't really yield them any any different outcomes, if they are still being taught in ways that make it challenging for them to understand the very core concepts of reading.

There are so many parents who feel like they have to fight the system.
— Kyle Stokes, senior K-12 reporter, LAist

That's when we start getting into what are these types of interventions, and do school districts have the tools to really help these students. I don't think we're able to say definitively from our reporting that all districts do have those tools.

And in a lot of cases, it seems like it really is parent advocacy pushing districts to adopt new policies and new curriculums to address what it is that their student needs. And that puts a lot of burden on parents, and not all parents have the same capacity to really take on what is sometimes a full time job in and of itself, to make sure that the child is getting the education that they deserve and that is their right.

Ross: One of the harder questions to get an answer to was, what usually happens when families don't have money? 

Kyle: The obvious possibility that we're all concerned about, and that some advocates have said that they are still worried about, is that kids don't get assessed, they don't receive the help they need. It's the point of Robert’s story in so many ways, it's like, you come up with coping mechanisms, feeling your way through life with sort of an incomplete understanding of how to connect words with sounds. It’s a scary thought that as much as 20% of our population, that's a reality for them.

Robert: That was one thing that really struck me when I was talking with [one of my sources] was, he would get punished for not having his math homework at school, so his mom started doing his homework for him. I wonder how many parents are out there right now just being like, let's just get him through, you know, pre-algebra or whatever and then figure it out.

Kyle: I don't want to put too much stock into the most recent test score numbers, but there are a lot of children who have basic issues with literacy and numeracy, even typical readers. Insert all the necessary caveats here — that a lot of those standardized tests are often just measures of socioeconomic status, and they're not perfect reflections of actual academic achievement or the worth of a student. But at the same time, the trajectory of those tests, the expectations of what a child should be able to do, by a certain age, there are so many children, especially in urban settings that are not reaching those expectations. And that's aside from dyslexia. And there's obviously probably interplay between those two issues, but it's more than just 20% of the L.A. school district population, or the state's population that isn't reading at grade level.

Ross: That recalls the phrase that came up in Mariana’s story, “The Sea of Struggling Readers.”

Mariana: It was a little unsettling to hear that a screening tool alone is not the only thing that is going to come and allow districts to scoop up all these children who are at risk of having dyslexia and whisk them off to a magical place where they learn to read — that when there is this overwhelming number of students who are struggling to read in some cases, there are some very foundational challenges with how we teach reading.

Ross: Many states have dyslexia-specific policies — pre-service and in-service requirements for teachers, universal screening, etc. States like Virginia, Kentucky, Indiana, New Hampshire, and Florida. You might see structured literacy elements emphasized in their curricula. And their reading scores are a lot higher than in California, which lacks a lot of those mandates. Maybe that kind of correlation raises an eyebrow. On the other hand, proving the causality between policy and test results is fraught at best.

Kyle: Early in my career, I was a reporter in Indiana, where they had a lot of Florida-style laws that were implemented around reading requirements. There was a third-grade reading test and — I think it's become axiomatic in covering education that children, by third grade, need to be beyond the kind of basic steps of learning to read. So Indiana, I think they fit into this common thread that Ross is mentioning that implemented a third-grade reading test and children who did not pass that test would theoretically be held back and made to repeat third grade. And that caused a lot of stress for those children. And it sort of is a traumatic moment, potentially. So I kind of wonder about the interplay between those laws, which have very, very real impacts on children and put very real stresses on children and raise the stakes for the children and for their teachers and for the school systems that are charged with managing them both.

And I wonder, if we were to tease apart those high test scores, how much of it is because the state of Indiana took a specific, thoughtful approach to literacy? Or was it reflective of something else in these high-stakes policies? I don't imagine California adopting a very red state response to low test scores, or these strict accountability measures.

Ross: Julia, you spent a lot of time with teachers who were learning about dyslexia. What stood out in terms of what teachers struggle with? And where are they most interested to learn or grow? 

Julia: What I kept looking for like, desperately, was, who was at a public school — it was all private school, private school, private school.

And I was very frustrated with the way that teachers were being depicted. Most educators want the best for their kids. Right? The idea that they’re resistant to learning new ways to help their kids like that felt weird.

I was thinking back to my own teacher training, like for my credential, for general education in English. [We learned] so much stuff, and then at the end, we have this one special education class and it's like, ‘here all the disabilities … go!’ And dyslexia was in there, but it's like maybe two, three paragraphs, and you're like, ‘Alright, cool. Next!’ Then you take that person and put them in a classroom with 30 kids. And I wanted to talk about the realities in that teacher preparation piece. I don't think anyone would be like, ‘Oh, I don't want to learn this and help my students.’

Not all parents have the same capacity to really take on what is sometimes a full time job in and of itself, to make sure that the child is getting the education that they deserve.
— Mariana Dale, early childhood reporter, LAist

When I talked to teachers, I think what they were most excited about was really just like, learning brain science. When I talked to them, they were like, this is awesome. We spent a lot of time talking about how students learn differently. We're building on what we know. We have some good practices, but here are things that we can do to make it better. So maybe we're already doing a little bit of phonics, now we're going to do a lot more. Maybe we're being kind of explicit, and now we're going to be really explicit.

Ross: What advice have you heard the most in terms of self-advocacy, about how to make a school or educators or just people around you aware, if you have dyslexia, that, you have trouble reading and need support?

Mariana: I think it's important to acknowledge for parents that this can feel like an isolating experience, even parents I talked to that had some familiarity with the special education system at their particular school.

A lot of the parents I talked to who feel like they were able to make a difference found allies, maybe other parents who had experienced similar things, and who might be able to help guide them through whatever their district’s specific system is. Those allies can also be educators within the school district themselves. Julia touched on this, but you'll find very few teachers who actively do not want children to learn and succeed at school. And maybe part of it is just bringing information and a bit of realization to a district, that this might be an area where there has been an oversight in the past.

And so I did hear from administrators in particular in the San Bernardino City Unified School District, who were willing to be very candid, that this was something that they were not addressing in the past, but that now they are seeking a greater understanding. And they are making changes to how the district runs to better address not only students in the future who might be experiencing dyslexia, but those who are in the school district. So I think wherever caregivers and parents can find people that are on their same team, that helps a lot.

Julia: One of the things I loved was going to this dyslexia simulation out in Corona. There were these parents who, on a Saturday, they could be doing anything, and they’re teaching people not only what dyslexia might look like but what it might feel like. They teach people not just a description of a learning disability, but how it feels for the student. And it was free and open to the public.

But I think it is really, really important that we don't focus just on the things that they can’t do, but really talk about things that they can do or can even do better than others in terms of creativity, or whatever, right? Just to make sure that students in the classroom don't feel that deficit.

Kyle: Whenever I talked to parents of students with dyslexia during this reporting, I was asking, ‘What is your child good at?’ I hope that everyone is asking that at all links in the chain, and that our education system is not just only approaching it from that deficit mindset.

Mariana: What were some of the things they were good at?

Kyle: One student that I talked to, she and her mom talked about how creative and sort of an, outside-of-the-box thinker she is.

Mariana: A student I talked to in San Bernardino, she graduated early, which I think was also something notable, and was going to be starting the next leg of her educational journey at a local community college. She was a wrestler in high school and loved it and wants to contribute and coach future wrestlers. She felt like, at school, which could be so frustrating to her, this was a place where she could go and just like, let out all of her stress and no one on her team, you know, they never talked about how she had dyslexia or had other struggles in school.

Julia: When I was in education, when our kiddos got to middle school, we started training them to lead their own individualized education plan (IEP) meetings. And the hope would be that once they got to high school, and especially college, that they will feel comfortable because they have to self-advocate. If you're not accustomed to that, that's very weird — especially demanding stuff of authority figures, right? So I think that that's a big piece too, is empowering young people to be like, ‘there's nothing wrong with me, I need support for the education that I deserve.’

Ross: That speaks to another issue we heard about from teachers, which is that many teacher-preparation programs don't prepare general education teachers to address dyslexia. And many school leaders may not see dyslexia as the purview of their general education teachers. But California's guidelines make very clear that general education teachers do actually have a lot of responsibility to dyslexic students.

Kyle: Dyslexia is not a special education issue, per se. That's one of the features in all of our reporting: that this is not an issue that should only be put on the educators who are charged with serving students with disabilities.

This story fits into a kind of series of issues where we have this disconnect in the way that we handle services for students with disabilities in the K-12 education system. If you end up in a school that understands that the intervention that a child needs isn't necessarily special education services, or that dyslexia interventions look different than just remedial reading, or dealing with other learning disabilities, you might be in a great position as a child, but we don't have a system that always responds directly to individual student needs.

And I think that disconnect invites some really radical rethinking of special education and what services for students with disabilities could look like. That would be costly and would require a lot of outside-the-box thinking from a wide range of different stakeholders in that system.

Learn More About Dyslexia
  • I want to know more about dyslexia ...

    • California Dyslexia Guidelines — Comprehensive guide from the California Department of Education to help educators and parents identify, assess and support students with dyslexia.
    • International Dyslexia Association — membership-based organization that hosts conferences and workshops, and publishes self-assessments and fact sheets on everything from the neuroscience of dyslexia to how to apply for accommodations on college entrance exams. It also publishes some resources in Spanish.
    • International Dyslexia Association, Los Angeles Branch — hosts teacher trainings, conferences, and provides grants to support dyslexia programs in local schools. Published fact sheets on dyslexia in English and Spanish.
    • California Dyslexia Initiative Free Webinar Series — hosted by the Sacramento County Office of Education and funded by the California Department of Education. Also publishes professional development resources for teachers.
    • Learning Disabilities Association of America: Comprehensive informational resources for parents, educators, and adults. Recommendations for helpful apps, programs, and teaching materials. Also provides advice for folks who have just learned they might have a learning disability.
  • I want to know more about laws regarding dyslexia and special education ...

    • AB-1369: California Dyslexia Guidelines — under the guidelines, the state Superintendent of Public Instruction is required to provide technical assistance in implementing the guidelines to parents, teachers, school administrators and faculty members in teacher training programs.
    • SB-237: Dyslexia Risk Screening — this bill has not been passed.
    • Individuals with Disabilities Education Act (IDEA) — IDEA requires school districts to provide a free appropriate public education in the least restrictive environment for children with disabilities. The federal IDEA website has resources for families, including information on individualized education plans (IEPs) and dispute resolution.
  • I want to connect with other parents or dyslexia advocates ...

    • Disability Rights California — engages in legal and policy advocacy, and publishes resources for individuals with disabilities and their families.
    • Decoding Dyslexia CA Parent Support Groups — Decoding Dyslexia, a grassroots organization made up of families affected by dyslexia and educators, has parent support groups that meet regularly across California.
  • I want to go to college ...

Terms To Know
  • Dyslexia Terms

    • Phonemes: The smallest units of sound that make up words. For example, while the word “car” is spelled with the letters c-a-r, the phonemes involved are “/k/” and “ar,” or /kar/.
    • Phonological awareness: An individual’s awareness of and access to the sound structure of oral language. It is the understanding that spoken language can be divided into smaller units (i.e., words, syllables, and phonemes) and that those units can be identified and manipulated.
    • Phonological processing: The ability to understand, mentally store, retrieve and change speech sounds. Someone with a phonological processing deficit has a hard time segmenting written words into smaller parts.
    • Decoding: A skill used to break words down into syllables and phonemes.
    • Fluency: In reading, fluency refers to the ability to read a text accurately and quickly, focusing on comprehension instead of decoding.
    • Dyslexia: A learning condition that affects how a brain processes language, which usually manifests itself in difficulty reading. People with dyslexia often have trouble recognizing letters and understanding how combinations of letters create the sounds that make up our language.
    • Dyscalculia: A learning condition that affects a person’s ability to do math, and can make math take longer. Dyslexia can also affect math.
    • Dysgraphia: A learning condition that involves difficulty with writing — handwriting, typing, and spelling. Like dyscalculia, dysgraphia has a high rate of co-occurrence with dyslexia.
  • Education Terms

    • IDEA: The Individuals with Disabilities Education Act. Federal law that requires students with disabilities to have access to a “free and appropriate education,” including additional services or accommodations.
    • IEP: Individualized Education Plan. A plan developed by a support team to ensure that a child who has a disability identified under IDEA and who is attending an elementary or secondary educational institution receives their education in the least restrictive environment. Children receive a support team that also includes a child’s parents and at least one special education teacher and usually a general education teacher; a school district representative; and other various experts and representatives as necessary.
    • Specific learning disability (SLD): One of the 13 disability categories identified in the IDEA. If an individual has an SLD, it means they can have trouble understanding or using language, spoken or written, that may make it difficult to listen, read, write, spell or do mathematical calculations. Dyslexia qualifies as a specific learning disability.
    • Multi-Tiered Systems of Support: A series of gradually escalating responses to students struggling in class. This is an umbrella term for the many options for services available to school districts, and is focused on all students, not specifically students in special education.
    • Neurodiversity: The idea that all brains interact with the world differently, supporting the notion that there is no one “right” way of neurological thinking or behaving.
  • Sources: California Dyslexia Guidelines, U.S. Department of Education