Kelli Sandman-Hurley: Developing Dyslexia Empathy

Aug 13, 2015 by

Man Reading Book and Sitting on Bookshelf in Library

An Interview with Kelli Sandman-Hurley: Developing Dyslexia Empathy

Michael F. Shaughnessy –

1)          First of all, can you tell us a bit about your education and experience?

 

Sure! I have a doctorate in Education with an an emphasis in Literacy from San Diego State and the University of San Diego. Since then I have continued to take courses in Special Education Law and Linguistics. I became interested in dyslexia when I found myself working at READ/San Diego, which is the adult literacy program of the San Diego Public Library for 12 years. I had the honor of working with low-literate adults who often lamented to me about their awful school experiences and how their life was so deeply affected by their difficulties with reading and spelling. They were bright, motivated people who will always have a piece of my heart. However, there came a point when I thought it was time to help kids before they became the adults who were in adult literacy programs and marginalized by the schools’ inability to give them the appropriate intervention and the Dyslexia Training Institute was born. I wanted to know everything there was to know about dyslexia in order to help the best I could – and I still have that fire to learn.

2) How long have you been working with kids with dyslexia, and please, could you give us YOUR definition of dyslexia, since there seem to be a lot of different definitions floating around?

            The Dyslexia Training Institute was opened in 2007 and we now have two centers in San Diego where we provide direct intervention, advocacy and assessments for local families. We are also lucky enough to have two employees who worked for us in San Diego and then had to move, but they were so good we couldn’t let them go completely, so they offer direct tutoring via Zoom technology. We can tutor kids and adults from anywhere and that medium has been surprisingly effective.

I use the same definition as the IDA, but I emphasize spelling. I find that spelling is woefully overlooked and misunderstood. Spelling is the key to reading. Here is IDA’s definition: “Dyslexia is a specific learning disability that is neurobiological in origin. It is characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.”

3) Now, you have recently discussed “developing dyslexia empathy”. What exactly does that mean to you?

            As an advocate I tend to hear a lot of “if they just tried harder, read more or they can do it when they are motivated” when I am in IEP meetings or even just having casual conversations. Dyslexia is much more complex than that and I can never begin to pretend that I understand what it feels like since I don’t have dyslexia. But I can create the feelings of stress and frustration that those with dyslexia have shared with me and that I  have witnessed as a reading therapist myself. Dyslexia empathy means that those who work with students with dyslexia should have at least a faint notion of how it feels.

Instead of feeling sorry for the student, which would be sympathy, I want them to understand it via their experience, which is empathy. Mostly, I want them to remember their experience when they are working with students with dyslexia. It’s not okay to use incentives when the student is already trying as hard as they can. It’s not okay to humiliate a student who really can’t do the task by making them try it in front of their judgmental peers, it’s not okay to not teach them how to spell and developing empathy helps the person without dyslexia understand why.

4) What behaviors would you like to see from teachers regarding their students who have dyslexia?

            The first thing they need to do is acknowledge that dyslexia is real, no matter what anyone professor or expert has previously told them, it is undeniably real and our laws are starting to catch up with the research, but our schools and teacher-training programs are still way behind. I place zero blame on the teachers for the lack of training they received but I do encourage them to ask their districts for some good quality training.  They can start with the simulation.

As far as teacher behaviors go, I think most teachers are already doing what they can for these students. Just keep reminding yourself that the student who is struggling with reading and spelling is trying and if it looks like they are starting to give up, then let someone know. Look for ways for students with dyslexia to shine. If they are good at math, then call on them during math. If they are artistic, make a big deal about their art. Find their strengths and call them out so the focus isn’t always on the reading and spelling.

5) Do teachers REALLY understand dyslexia? Do parents REALLY understand dyslexia?

            Oh boy, this is a loaded question! The only answer is, it depends. The only way to know would be to ask them what they believe dyslexia is. If they say it is a visual issue where people see things backwards, then no, they don’t understand it. Most teachers report only getting about 15 minutes to an hour of ‘training’ about dyslexia in their teacher-training programs.  I will say that there are a lot of teachers who seek out training in dyslexia on their own. They take our courses all the time and always verbalize their frustration that they didn’t have this information when they started teaching. Teachers are not the problem, universities need to start stepping it up and stop ignoring the obvious.

Parents, on the other hand, are usually pretty well-versed in dyslexia by the time they get to me. They have done their research and are usually able to sift through the programs that promise to ‘cure’ dyslexia in a matter of hours or can see through the color overlays and vision therapies that are not appropriate interventions for dyslexia. So, like I said, it depends.

6) Should students with SEVERE dyslexia really be included in regular education? What does a teacher in say, the 12th grade, need to know about a student reading at the 2nd grade level? And what accommodations and modifications need to be made for that student?

            Every student with dyslexia, mild to moderate to profound, should in general education. If reading and spelling are the only deficits there is no reason they should be pulled out for more than one to hours per day. And if they are receiving the appropriate intervention they should only receive special education services for 2-3 years and graduate out. Unfortunately, the data shows that they are being identified late and never graduate out of an IEP. This should not happen, we know enough to get them in and out and it’s not happening.

The key to their success in the general ed classroom is accommodations. They need access to books on audio as early as kindergarten, they need to learn to use speech to text, among many many other accommodations. Teachers and parents needs to embrace accommodations and understand that they are not ‘cheating’ or a the ‘lazy way out’, we don’t say that to someone who needs glasses, it’s the same thing. Kids with dyslexia not intellectually-challenged, they learn differently – that’s it.

I love the question about the high school teachers. We get the most pushback from middle and high school teachers. I think the reason is because they are content area teachers, they are not reading teachers, so I don’t expect them to understand dyslexia. However, it doesn’t change the fact that they are still responsible for teaching these children to read and spell. So, for the high school teacher I would advise him or her to get familiar with the accommodations and the reasoning behind the accommodations and to understand that it’s not a ‘leg up’ or an ‘advantage’ it’s simply making it so the quite capable student can access the information they are capable of understanding in a medium other than print.

I don’t like to use the word modifications for a student with dyslexia, that could put them on the wrong academic track. But for accommodations, here is a great list from Learning Ally:

 

https://go.learningally.org/wp-content/uploads/2015/02/ LA_Accommodations_1014.pdf

7) A personal question—–in your judgment, would kids with dyslexia benefit from some counseling regarding their, say ” condition”?

            I think it totally depends on the kid. Some kids embrace it and are totally okay with it and others could definitely use the counseling. I think the parents can use the counseling as well. I think it would be really beneficial if kids received counseling to help them feel less hesitant about using accommodations in front of their peers. I find that to be one of my biggest challenges.

8) Are there training programs that help kids with dyslexia read better ? Or do they simply grow out of it?

            No one ever grows out of dyslexia, but their symptoms can change over time. Yes, there are interventions that help, but the interventions are only half the battle, the teacher’s knowledge of the intervention is essential. Interventions based on the Orton-Gillingham approach are effective and Structured Word Inquiry (SWI) is also effective.

9) Children with dyslexia often have a plethora of other problems–spelling, low frustration tolerance, attention deficits, low self esteem etc. Does this all fit into your picture or conceptualization?

            First, spelling is huge part of dyslexia, so it shouldn’t be categorized as ‘other’ problems.  I am huge proponent of teaching spelling to teach reading.

But yes, many students with dyslexia do have co-morbid conditions. We see ADHD as the most prevalent. We also see a lot of Executive Function issues and I would love to see more of that tackled in the dyslexia community.  The frustration tolerance usually dissipates when they are finally given the appropriate intervention and are making sense of our language.

10) What have I neglected to ask?

            Dyslexia occurs in about 20% of the population and it occurs on a continuum, so no kid with dyslexia will look like the next kid with dyslexia.

Dyslexia is a qualifying condition under SLD in IDEA, so schools do have to acknowledge it.

It is neurobiological and highly hereditary.

I could go on and on…

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1 Comment

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    Zandile

    Thank you so much very informative I have a dyslexic child and would like to know more.

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