TALKING ADVOCACY AND DYSLEXIA WITH ANNA THORSEN

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img_1808I first heard of Anna Thorsen a couple years ago. Some friends who had children at Eakin Elementary School  in Metro Nashville Public Schools (MNPS) were singing her praises as president of the Parent Teacher Organization (PTO). After finishing up her tenure as PTO president, Thorsen transitioned into being an advocate for children with dyslexia, which is only natural because she is the mother of a child with dyslexia. As a former attorney, Thorsen conducts her advocacy work much as I imagine she did her law career: with lots of research. If you are going to engage her on issues, you better have done your homework.

We sat down to talk about her experience and research over biscuits last week at the newly opened Holler and Dash in Brentwood. What follows is a wide-ranging, free flowing, passionate conversation.

Dad Gone Wild: Good morning. Thanks for meeting me over biscuits.

Anna Thorsen: (smiling) I love biscuits.

DGW: Let’s start with your experiences with being president of the Eakin PTO. What made you decide to run? I know you have kids in school and you’re an advocate for public education, but what made you decide to take on this huge commitment?

AT: Honestly? (chuckles)

DGW: (laughs) Honestly. What made you say this is something that I want to do?

AT: I think it was a little bit daunting to consider. I think PTO leaders are the untagged heroes of the public education system because in essence you are undertaking a full time job. I had been the head of fundraising, which is also very hard job, because nobody wants to give you money – it’s really about like pulling teeth. But then you step back and you analyze. You realize just how important it is. And I think it becomes one of those practice what you preach moments.

There were so many things I wanted our school to do, and I saw so much possibility. The biggest thing I wanted to do was to share the good stories about everything that was happening in public education, and in particular, in our school. And I thought that this was a great way to be able to do that. In the end, it ended up being a great learning experience for me. I learned so much through being a PTO president. I learned about how the school really works, all the different stakeholders, and how complex it all is.

DGW: I experience that on a regular basis. Every time I think I have an understanding of how it all works, and I think I have a great grasp of it, something else is revealed. And I find myself saying, “Oh, I didn’t know that.” Without really getting in there, we constantly make these judgments on things that we don’t fully understand, and in some cases, just don’t know.

AT: Very true. As PTO president, and as a PTO member in general, you have such a unique opportunity to support the school, support the principal, and support parents in the community. There is always going to be the jokes about bake sales and the carnivals – which I never had a carnival on my watch because it’s not my thing – but there is so much more to it, and it really is a powerful way to get all families involved.

Say you have a family who are intimidated because they’re not English speakers, so they are hesitant to participate in academic conferences. But if you’re having an international potluck, and they can bring their family recipes, that’s where they’re going to come in the door. And then they’ll begin to become part of the active school community. I think you just need people to come in. I think we want to do a better job of educating children, and we get so focused on that we lose sight of the importance of families feeling welcome in our schools. And I think we tried to really make Eakin a welcoming environment for all so they could be a part of the amazing things that were going on.

DGW: One of the things that impresses me with Eakin is their use of clubs, and the fact that they utilize clubs to get kids engaged. I’ve never understood that in some of our poorer and more challenged schools, we extend the school day, but we do it with more direct instruction instead of utilizing a stamp club, the kite club, a chess club, in order to improve literacy. Kids are going to read about what they’re interested in, and we should use those interests to make them better readers.

AT: I think making learning exciting is essential. I think there has to be some self-direction of what we learn because that’s how we learn as adults. We choose books we want to read, shows we want to watch, we seek out more knowledge on the things we are interested in. Why shouldn’t the same apply to children? But it goes back again to parent involvement. The reason Eakin has amazing clubs is because the parents said we need amazing clubs. We had one or two parents – especially one mom – who came in and she just dedicated her time to this. Why did she do it? To benefit all of our children, which is why we should do it. It’s why we take these positions. Like we don’t do it for just our kids or our ego; we do it for everyone’s kids, and that’s what public education is about.

Eakin has benefited from this parent’s amazing, passionate hard work, but her child graduates this year. Her kid is in 4th grade. She’s moving on hopefully to West End Middle School, where her older daughter is. There has to be a next generation of stepping up, which is why I really feel like for the benefit of all the public schools, we have to really start investing in parent engagement, family engagement, and teaching parents that you can make a difference. You may not want to be a PTO president, because that’s a full-time job and it’s really stressful, but if you love clubs, if you have a passion for whatever, get involved. There is going to be some way that a school can use your talent. We have to do better about valuing parent’s abilities.

DGW: I was at a community schools coalition meeting yesterday, and the talk of PTO came up. And as we often do, we talked about educating parents and getting parents involved to increase their awareness, but then we never turned the lens backwards and asked what do administrators know about PTO and the value of it? What do teachers know about it? To many people, a PTO is nothing, but as you mentioned, it’s a fundraiser, a way to help get things funded that the official budget doesn’t cover.

AT: Absolutely. I noticed that when we came in, during my first year in PTO, teachers were standoffish towards PTO. And I was really confused until I went back and looked at some of the PTO’s history. I think a PTO has to be careful. They have to be supportive of the teachers and the administrators. They can’t have their own agenda. I think the PTO at Eakin historically, looking back to 2006, had taken sort of a “we know better” kind of approach, which is not the place for a PTO. If you want to be an advocate against your school and be overly critical, you need to do it a different way. I feel that a PTO really needs to be supporting parents and teachers. You can get some pushback from teachers, but if you can keep communication open and demonstrate support, you can overcome that pushback.

DGW: Let’s shift gears a little bit and talk about your work in regards to dyslexia. Your daughter was diagnosed when?

AT: My daughter was diagnosed in 2nd grade. At our Fall teacher conference, as the teacher told us how Clara was struggling and I knew instantly in that moment that she has dyslexia. I saw it because I, too, have dyslexia. I’ll never forget that first conversation with our school. I love our sweet school, but when I sat down and said “Well, I think my daughter has dyslexia, I would like her tested” the school said “Well, we don’t use that word. We don’t say dyslexia in Tennessee and we can’t test for it.” I was like, “Yes, you can say it because the federal government says it.” To say I was shocked by the schools’ response is an understatement. This is all a very long and complicated story, which I was actually interviewed about for an NPR Mindshift story, so you can ready the whole thing there, but what it boils down to is that our school and our district clearly wanted to do what was right for Clara, but they were not allowed to by the Tennessee Department of Education. Once I realized that all our issues were coming from the state, I ended up having to up to the federal government and have them intervene. After a stressful several months, Clara ended up getting an IEP for giftedness and a Specific Learning Disability, but they still would not allow us to use the word dyslexia anywhere in her IEP. Over and over our principal said “we can’t use that word.” It was not until October, 2015 when Secretary of Education Arne Duncan issued a “Dear Colleague Letter” telling schools that they can and should use the word dyslexia that we were allowed to write the word “dyslexia” into Clara’s IEP. Amazing, right?

Since that time, I really feel that with the new Say Dyslexia law that our state passed effective July 1, 2016, schools are becoming more supportive. With the new law, the state has created this advisory council, and we’re starting to say dyslexia more in our state. Now, are we doing it perfectly? Absolutely not, but I think we’re finally on the right path to start getting our school to say dyslexia and therefore provide real service for our kids.

DGW: What was the reception from lawmakers when you first started working on the bill? Were they receptive? I know that when I started working on education issues a couple of years ago, nobody wanted to talk; nobody wanted to hear what we had to say. We could sit down in the offices and talk and then get a smile, a handshake, and a thank you. “Make sure that you call us again soon.” And we were forgotten as soon as we walked out the door.

AT: For me, it was a bit different because I wasn’t as involved in the day to day. There was a mom in Clarksville, Lori Smith, who was really involved in actually going out and advocating. By the time I came on to the scene, State Representative Joe Pitts and JC Bowman of Professional Educators of Tennessee were already very much on board. Once you’ve sit and listen to the facts, it’s very difficult to say, “We don’t need to do anything to help dyslexia” because it’s so compelling. The statistics are so overwhelming about the consequences of not dealing with dyslexia.

So while legislators were very open to taking action, it’s the districts and the schools that still have a lot of work to do. “DYSLEXIA is hard to understand.” and new teachers are not being educated on dyslexia when they’re getting their teaching degree. I think we have to figure out as a state and as a nation where we’re going to focus our priorities.

DGW: In our last conversation, one of the eye-opening moments for me is when we talked about English learners and how many of them go undiagnosed because the assumption is made that their problems extend from language acquisition.

AT: It’s a very real challenge.

DGW: After our talk, I spoke with Kevin Stacey in the ELL Department at MNPS, and he confirmed the challenge but also informed me that they are very on top of this. They have a number of strategies in place to catch kids quickly.

AT: Great! Here’s something else: So dyslexia is neurobiological. It’s just a regularly occurring brain difference, and 20% of us are affected. Those numbers come from studies done at MIT and Yale, so there is no question that this is a truism. We know that 20% of our kids – all kids, kids around the world – are going to struggle with reading and language. Dyslexia is manipulating language being able to read words, being able to spell words. And so, if you’re coming to the U.S. as a foreign language speaker, some languages are much more transparent than English. Spanish is a transparent language. So if you have dyslexia, Spanish is easier to spell and read, making dyslexia harder to identify. When you’re coming in to English, it’s much more of a dense, less transparent language. So you’re going to have a huge problem. So you have these kids who are EL learners and are struggling with language acquisition because they also have dyslexia. The rule says 20% of them, right?

DGW: And that becomes a challenge not just for the students, but the individual schools as well. We’re not painting an accurate picture of a school’s performance if so many kids are going undiagnosed. Even if it’s just 7 or 8 kids, I don’t think most people realize how much 7 or 8 kids can change the outcome of a standardized test, therefore leading to an inaccurate narrative about the school.

AT: Timed stressful situations are the worst-case scenario for people with dyslexia. So they’re typically not going to test well at all. If that’s how you’re measuring success, it’s really dangerous. It’s a dangerous thing to look at because we really need to look at the why, the deeper why.

DGW: And in your research you’ve discovered certain strategies that you feel really work?

AT: “Absolutely. I hear frequently that we need to get kids reading Kindergarten through 3rd grade and there are a lot of programs to get kids reading at home. We send kids home with books and tell parents to read with them each night. So, we are suggesting that struggling readers will improve if they read more at home, right? Well, that totally misses the mark and seems silly to me. Dyslexia, which is why 20% of kids struggle to read, is hereditary. Forty percent of people with dyslexia have a parent, child or sibling with dyslexia. So, if our strategy to improve literacy is to have parents read to their kids and we give them books, there are pretty good odds that the parent also is a struggle reader. Many parents couldn’t read the book to their child even if they wanted to! And one of the strategies I think that’s the most important is getting kids and families access to audio books. You can get them at the library. You can get them online. There are so many sources.”

Audio books let the kids explore books. They let them explore complex sentence structure. They let them explore rich vocabulary higher than they can read. You may have a 4th grader with dyslexia who really struggles to read The Cat In The Hat, but if you let them put on those ear phones they can explore Percy Jackson and Harry Potter, and they get into all these amazing words. Studies show that your brain doesn’t care how you get the words and some of the structure into your brain. It’s not cheating to ear read, okay? And some of these kids have to rely on it.

If we’re really concerned about comprehension and literacy, then we have to make this resource more available to all of our students. Michelle Obama was trying to get more audio books into lower income neighborhoods, which would be huge. We can’t read the book together, but let’s listen to it because most of us have a phone or something that we can listen to books on.

DGW: What’s next legislative-wise? Do you have anything on the radar? Anything on the agenda?

AT: Well, the state Dyslexia council is up and running. All schools will be required to screen kids with the universal screener and add a dyslexia-specific component to it, and that will hopefully catch more students.

We are trying to identify kids in K-12. Once they’re identified as having characteristics of dyslexia, what the law says is that we’re going to give them appropriate interventions – because again, with these students, putting them in some other random intervention is never going to work. Science is absolutely clear on what these kids need. We know how to get these kids to read. The problem is that it’s intensive and it’s intentional and it’s systematic and it needs to be done one-on-one or two-on-one, which is really hard in a RTI setting.

But, Despite the challenges, this really does belong in those hours of RTI2 within general education. We can’t just keep only doing this in special education because we’re missing a huge percentage of the population and a huge opportunity to get our kids reading. So, I think that the first step is just to get the state and districts – all districts across Tennessee – to start doing the screener with all students.

DGW: That’s a lot of work, but I do think the Tennessee Department of Education is trending in that direction. Not just with dyslexia, but as a whole. I think I’m becoming guardedly optimistic about our state education policy. They seem to be at least trying to listen and improve right now. In the past, it didn’t always feel that way.

AT: Right. And I think they are trying. There’s a Decoding Dyslexia movement nationwide. Parents are starting to say, “Hey, why aren’t we doing this?” And I think there is such power in parents rising up and saying we need these services. Because if you’re a parent of a child with a disability, it’s like you are in a silo. You just feel so isolated, and that there’s no one else like you. But then when you start realizing that a lot of us are having kids who are struggling with reading, and if we can kind of have this collective voice, it makes all the difference in the world.

I’m sure you feel the same way about EL families. There’s are real challenges, not only a language challenge, but I’m sure cultural challenges as well. We have all these kids in our district facing challenges but we don’t have a collective voice because we’re all so isolated in our little silos of dyslexia, of autism, of physical disability, and even of English Learners. And so I really want to try to work to get those voices together, not just for kids with disabilities, but for all of our kids. Kids benefit from being around diverse populations, and disability is very diverse. So, I think we’re on the right track, but we need to keep getting better. And one thing I want to say about why we should care about dyslexia–

DGW: Okay.

AT: Do you know about why we should care about dyslexia as a society?

DGW: Why?

AT: There are many reasons. So, one of the reasons is 85% of juvenile offenders have dyslexia. There is a study in Texas: 80% of the Texas inmates were functioning and literate, and 48% of them have dyslexia that was not identified at schools. So we have 48% of our prisoners who have dyslexia. A lot of them probably went to prison because of trouble resulting out of their inability to read. That’s a huge issue. So, if we help with dyslexia we’re going to help with our prison population. We spend about $32,000 on inmates every year, where how much do we spend on education in Tennessee?

DGW: About $9,000 a kid or something.

AT: Exactly, about $9,000 a kid. Now, also to do direct instruction – We talk about how direct instruction for kids with dyslexia can be expensive, right? It will cost about $8,000 per kid to do one-on-one direct instruction. I got this number from one of the Decoding Dyslexia Maryland branches because they researched it. And so if you take our $9,000 we already spend in Tennessee, plus $8,000, that’s about half of what it costs to put someone in prison. I feel like we need to start realizing that.

The other thing is this: there’s a study on teen suicide. They found that 89% of suicide notes were left by teens that showed signs of having dyslexia. Another study said that teens with learning disabilities like dyslexia are three times more likely to commit suicide. Additionally, the statistics on teen pregnancy, on welfare, are influenced by whether or not you have a learning disability. Only 67% of students with a learning disability graduate from high school. So that’s a huge issue. As a society, if we really care about the school-to-prison pipeline, addressing social problems is important. Just think how much progress we could make by teaching people to read.

I get so frustrated as an advocate for people with dyslexia. We will do anything to fix literacy except the one thing that 70 years of research shows works, which is structured literacy. So I really hope that we start as a district and as a state investing in teaching teachers and figuring out how to accommodate these kids. Not only do we want them to be alive and out of prison, but they have so much to offer. For example, 50% of the people at NASA have dyslexia  and if you look at the list of famous people with dyslexia – Richard Branson, Jennifer Aniston, Lewis Carroll, Cher, Anderson Cooper, Charles Schwab, and the list goes on – it’s amazing.

We have these kids sitting in their room, who may or may not be our future business leaders, our future biologists, unsure they can read and write, so we treat them like they’re stupid. We teach them like they’re second-class citizens. We treat them like they’re never going to amount to anything. And the fact is they’re probably the brightest kid in the room, but they just can’t read or write or spell. So, we have to get better at seeing all kids.

DGW: Well thank you very much Anna. I appreciate you taking time. And these bisquits are great.

AT: I really appreciate it. And the bisquits were good. Thanks for picking this place.

 

Talking with Anna will certainly give you a lot to think about. I certainly learned a lot from her and very grateful that she took the time to sit down with me. If you’d like more information about how to get your child tested for dyslexia, please contact your child’s teacher or school psychologist. For outside testing in Nashville, contact Learning Matters, which is a non-profit who works frequently with Metro Nashville Public Schools and provides independent testing on a sliding scale.

For more information about dyslexia, here are some of Anna’s favorite resources:

1. Understanding Dyslexia: A Guide for Tennessee Parents and Educators. Tennessee Department of Education, January 2016.
2. Tennessee Department of Education’s Dyslexia Advisory Council Page. https://www.tn.gov/education/article/dyslexia-advisory-council
3. United States Department of Education, Office of Special Education and Rehabilitation Services “Dear Colleague” letter dated October 23, 2105.
4. TED Ed video “What is Dyslexia” by Kelli Sandman-Hurley on YouTube. (4 minutes.)
5. The HBO Documentary “The Big Picture: Rethinking Dyslexia” on You Tube.
6. The book “The Streets Lied to Me” by Actor, Advocate and Activist Ameer Baraka about how the pain and shame of dyslexia led him to prison. Also see his website for news clips about his powerful story: http://www.kingbaraka.com.
7. The Yale Center for Dyslexia & Creativity website at dyslexia.yale.edu especially the “Dyslexia Bill of Rights” and “How Parents Can Build a Word-Rich Life for Dyslexics” by Kyle Redford.
8. The MTSU Dyslexia Center website at http://www.mtsu.edu/dyslexia/. Especially the flyers featured on the “Publications” page.
9. The six part series by NPR called “Unlocking Dyslexia” by NPR from November 2016.
10. The six part series by MindShift by Holly Korbey. Especially the final installment entitled “The Dialogue Surrounding Dyslexia: Five Important Take aways” dated February 26, 2016.
11. Time Magazine’s “Dyslexia is More than a Reading Disorder” by Alice Park dated December 21, 2016 about the newest research by MIT published in the journal Neuron.
12. Washington Post’s “Is listening to a book ‘cheating’?” by Valerie Strauss July 31, 2016.
13. Decoding Dyslexia -Tennessee branch. https://www.facebook.com/decodingdyslexiatn/
14. Twitter resources: @ddtn13, @understood, @dyslexiaMTSU, @LearnNashvlle, @DyslexiaToday.
PRESENTATION INFORMATION:

If you are interested in a presentation for your organization, please contact Anna Thorsen at athorsen16@yahoo.com or via Twitter @athorsen16. Presentations can be tailored from 20 minutes to 2 hours and can cover one or more of the following topics:
1. What is Dyslexia? A look at what dyslexia, what it looks like and why its hard.
2. Dyslexia and Classroom Hacks: how to create a dyslexia-friendly classroom.
3. Dyslexia and Assistive Technology: what dyslexia is and how technology can help.
4. Advocacy and IEPs: tips for parents navigating the special education process.
5. Dyslexia and Literacy: why should we care?

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One comment on “TALKING ADVOCACY AND DYSLEXIA WITH ANNA THORSEN

  1. Anne says:

    “Since that time, I really feel that with the new Say Dyslexia law that our state passed effective July 1, 2016, schools are becoming more supportive. With the new law, the state has created this advisory council, and we’re starting to say dyslexia more in our state. Now, are we doing it perfectly? Absolutely not, but I think we’re finally on the right path to start getting our school to say dyslexia and therefore provide real service for our kids.”

    This is just so sad. I can’t believe that in the U.S. we’ve gotten to the point where we need a specific law in order to say a certain word, and that the law could only be passed once permission from the federal government was given.

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