Cortical Visual Impairment Complexity with Matt Tietjen

Transcript: 

[MUSIC PLAYING]

Hello and welcome to Perkins eLearning To Go! Each week our hope is to provide you with an inside look at special education topics, in particular visual impairment. Through a series of interviews with leaders in the field and a fresh look at our webcast series, we know you will learn something new when you are on the go. Now it's time to sit back, relax, and let's hear what this week's podcast is all about.

[MUSIC PLAYING]

Hello and welcome to Perkins eLearning To Go! This is Valerie. On today's podcast we have Matt Tietjen. Matt is an education consultant and teacher of students with visual impairments out of Connecticut. He specializes in working with children who have cortical visual impairment and he lectures nationally on the What's the Complexity Framework and other related topics. You can also find Matt teaching one of our courses a couple times a year called the What's the Complexity Framework Designing a Visually Accessible School Day for the Child with CVI. It is a pleasure to speak with you, Matt, and welcome to our program.

You're welcome. It's great to be here, thank you for the invitation.

So as I mentioned in your introduction, you teach a class here with Perkins eLearning on CVI complexity. Can you tell me what made you decide to pursue this topic?

Sure, yeah, I have come to think that difficulty with visual complexity is really at the heart of what CVI is. So I'll tell you a little bit about what I mean. When we look at the world down in front of us, our eyes are giving our brain a bunch of raw data-- just individual data points that look nothing like an actual image and our brain has to interpret that raw data. It has to take that data and create an accurate image of the world out in front of us that we can interpret and act upon. This is a really complex computing process and so kids with CVI have more difficulty with this process than typically sighted people do. And so, to me, this is what difficulty with visual complexity really means in its essence. And I think that's really the core deficit in CVI.

Christine Roman-Lantzy and her work on the see the CVI range breaks down visual complexity into four different categories. So there's difficulty with complexity of objects, that means difficulty interpreting what you're seeing. Difficulty with complexity of the array, so that means difficulty handling lots of things at once-- simultaneous visual information. There's complexity of the sensory environment, so, in other words, kids with CVI can have a hard time using their vision when there's competing information like sound or smells from the environment. And then finally complexity of the human face, the difficulty seeing, or recognizing, interpreting faces. And, of course, we know that there are other characteristics too in CVI such as the need for color as a support, the need for movement-- that is visual movement-- and difficulty with visual novelty and so on. And, to me, most of these other characteristics-- they don't exist independently from complexity, but they actually exist because of difficulty with visual complexity.

And so, for example, let's take color. We know that students with CVI tend to have a need for color as a visual support and this directly arises out of their difficulty with visual complexity. So, for example, we all have difficulty with visual complexity even typically sighted people. So when we're confronted with complex information such as subway maps, or, in the past, roadmaps, restaurant menus, information in a textbook page-- that's all pretty visually complex, but we notice that all of those things are color coded very thoughtfully to help us chunk and process that visual information. And so kids with CVI, they have more difficulty with visual-- with the complexity of the visual array, so then they need color more as a support.

A student who needs, for example, every other word highlighted so that they don't-- so that the words don't seem to kind of squished together or run into each other-- in this case, that student is-- they're using their intact color vision as a support or a relative strength to overcome their difficulty with complexity of array. If that student didn't have difficulty with complexity of array, they wouldn't need that color as a support. And you can trace that thread through any students need for color as a support. It really comes down to helping them overcome that difficulty with visual complexity.

And so when I look at most of the CVI characteristics, I see this relationship between difficulty with complexity and the other characteristics-- that all these other characteristics, or at least most of them, are arising out of that difficulty with complexity. So when I look at a student's school day and when I designed the What's the Complexity Framework just to help educators have a system for designing an accessible school day for kids with CVI, complexity-- visual complexity and sensory complexity was just the natural focus point.

It's interesting and I like the point you brought up about maps and-- I go back a little ways and I remember using maps. And you're absolutely right, color coding really makes it a lot easier to understand.

Yeah, absolutely. And with those old road maps right there we're-- any of us with typical vision are reaching the threshold of what our brains can handle from a visual complexity standpoint. And the designers of those maps understood that and they knew that color is one of the really-- one of the design elements that can help all of us sort through that complexity better. And so our kids were CVI, because they have more difficulty with visual complexity, just need that color support to a greater extent.

So as you're working with these kids today, what do you feel are the greatest challenges that you face with working with children that have CVI?

Yeah, so I think I would maybe think of-- break this down first on a more regional level and then a national level. I think personally, for me-- and this is more of a regional thing because I think this varies from depending on the area of the country you're in-- but in New England we definitely have a TVI shortage. And in Connecticut we certainly do as well. And so I would say that my personal challenges have become caseload size and driving time. And I wouldn't want to give up a single student that I have, so I'm more than willing to drive an hour here, an hour and a half there between schools to see my students. My only regret is just that if the driving time were less, I could see more students and see them for longer periods of time.

So I think just those logistical issues are the toughest thing for me and the biggest challenge to overcome. And on a state wide level, we're starting to take steps to really address that by offering different types of professional training to the paraprofessionals and teachers who are working with our students to supplement the time that we're there with the team as well. So I'm very hopeful about that.

I think on a national level-- I think some of the biggest challenges that related to working with children with CVI are more systematic. I think one of them is the level of preparation-- of TVIs coming out of their graduate programs to work with kids who have CVI. I know that when I was in college preparing to be a TVI, CVI was woven in here and there throughout the-- throughout a couple of the courses, but the main focus of those courses was ocular visual impairments.

Since then, UMass Boston has actually created a complete class on CVI that's mandatory now for students. And I think that's fantastic. And I think that's a model that maybe the other programs throughout the country may want to follow. Because I think that TVIs is coming out of the preparation programs very prepared to teach Braille and very prepared to work with kids with ocular diagnosis, but not necessarily kids with CVI. So I think it's something that we can't really just mention or weave in throughout other courses, but that CVI is so different than ocular visual impairments and the interventions and assessment are so different that it really needs to be its own separate curriculum.

And then I think another barrier or another difficulty in TVIs serving kids with CVI is the underdiagnosis. Every year I come across students who are not receiving services. Just by word of mouth a teacher will tell me when I'm at the school to see one of my students-- a teacher will tell me that they have another student in the school who has similar visual behaviors, but who doesn't have a diagnosis. And we'll get permission to go out there and do a one-time consult. And it seems pretty clear from an educational-- from a functional vision standpoint that the child has CVI, but helping the parents figure out how to get that diagnosis is a challenge. So I think the more that eye doctors-- the more that CVI is on their radar, I think, the more likely we'll be able to serve more kids out there who might be undiagnosed now.

And as it there is more awareness, too, the-- more kids will be diagnosed which will need more people to support them. It's like a circle.

Right, right, yeah, absolutely.

What recommendations would you have for teachers and parents who are struggling to meet these needs for their kids?

I would say that my biggest recommendation is to partner. When teachers and parents truly partner, they will meet the needs of kids with CVI, at least that's been my experience. My growth-- when I-- my first-- when I first heard of CVI, it was 2010 and I was sitting on Peg Palmer's porch. She was-- she's been a TVI for years in Connecticut and very experienced with CVI. She's actually one of the people that helped create the CVI for the TVI webinars that Perkins runs. But I was taking a UMass Boston class and I needed to do some pre-practicum work and one of my assignments was to interview a TVI about his or her job.

And so I was interviewing Peg Palmer and she was speaking very passionately about CVI and about how-- why she enjoyed working with kids with CVI so much and describing how rewarding it was to see kids' vision improving interventions. And I remember thinking to myself-- I nodded and I was telling her, oh, that's great, yeah, CVI, but I really had no idea what it was at that point. I had just started my time at UMass Boston and we hadn't really gotten into the different types of visual impairments yet. And I just remember thinking, I wonder what a cortical is? I thought maybe it was part of the structure of the eye that we hadn't quite gotten to yet. So, of course, I looked it up when I got home and realized that it would-- that it was-- it meant brain-based visual impairments.

So since then-- I might talk a little bit more about this later, but-- I had a lot of growing to do from this question of what's a cortical all the way to where I am now where I do feel competent supporting kids who have CVI. And I think the biggest, most important consistent driving force and inspiration in me continuing on this journey of learning about CVI, has been my partnerships with parents. When I first started working with kids with CVI on my caseload, I made lots of mistakes. And I certainly didn't understand CVI as well as I do now and I know there's still a lot of things I need to learn. But the biggest thing that kept driving me forward was partnering with parents. It was coming together as a team with the parent, and collaborating with them, and just seeing their drive to do whatever they could to help their kids-- that drove me to keep going and to keep learning and to keep getting better at supporting their kids.

And I think that the parents are the most invested, most enduring, and often the most knowledgeable members of the team. I can certainly think of students who I have had where I can say that we have struggled to meet their needs, but I can't say that for any of my students where I have been able to form collaborative partnerships with their families. In those cases I feel like we really are meeting the students' needs, but it's not just because of what I'm doing. It's really because we're-- the parents and I are really working together hand in hand throughout the whole school year, month to month, sometimes week to week-- not just the PPT meetings. And I think that's what really makes a difference.

I think often we pay lip service to including parents, and I include myself in that as well, but then often end up seeing them a little bit more like customers-- like a business might see their customers. They value them, but they hope they don't complain. And I see that dynamic sometimes, whereas that's not really a true equal partnership.

To me, the true partnership is real collaboration throughout the year. So it might mean calling a parent after school to share a challenge that's come up, and then brainstorm with that parent about how we might adapt or modify to overcome that challenge, to help the student overcome it.

I think that partnership means also admitting that we don't have all the answers as the professionals, but having confidence that the answers will reveal themselves through true partnership and collaboration. I think it's also being able to look at a child's program not as something that we as the educators are going to design ourselves, and then present it to the parent as a finished product, but rather something that the family and the educators have designed together and that we're both invested in. I think that arriving at shared buy-in to the students program is so important.

So I think that I could recommend-- there are certainly resources I can recommend. There's different approaches I can recommend. But I think really, it comes down to that partnership, that really true partnership that we're both in this together and we both have equal qualities to bring to the table that will help the team get to wherever they need to help the student.

But when you form that partnership with the parent, you're getting a really good 360 view of the child, but do you also see a higher level of success with that child when you have that relationship?

Oh yeah, without a question. Without question, every single time. In fact, really all of my students who I can go I look to as the most shining examples of success have been because of those partnerships with parents. So one example-- I can think of a student in phase 3 who I have now. And a couple of years ago, they were working on-- it was in math class, and they were working on finding the volume of prisms, of geometric prisms. And it was the final exam for this.

And I remember, just as they always do, the teacher showed me the final exam a couple of weeks in advance. I looked through it, we collaborated, the team and I. I made some suggestions, they followed all my suggestions, and the student took the exam and ended up getting a 60 on the exam. After the exam went home, I got a call from the student's mom. And we talked and she said, I don't know. There's just something about this. This was difficult material, but there's just something about this where maybe visually there was something more we could do for her to make it more accessible.

I think this is more-- because the parent had studied with the student before the exam and she said, I really have a sense that she understands this better than she performed on the test. So I think it's more of a visual thing and it might be less of a cognitive thing in this case. And so I said, OK. I mean, I was disappointed that all the intervention that we put in place didn't work, but I was always open to that possibility that we still didn't do enough or that we didn't quite-- that there was something we weren't quite seeing, something we were missing.

So we went back to the drawing board. I took the study guide again for the test and I sat down with the student after school one day. And we spent about an hour going through different iterations of what the problem could look like. I was basically making different colored adaptations using highlighters, different adaptations to the different prisms that were going to be on the test. And through feedback from the student, and then eventually when the parent came to pick her up, I asked the parent a couple of questions and we looked at some of the examples together. And she helped me come up with some other ideas.

And through that collaboration, we were able to give the student another version of the test that had been adapted just a little bit differently than before to make it more visually accessible. So she retook the test and she got a 94. So I mean, I think that's just an example of-- I think it could have been easy to feel like, hey, I just spent two weeks modifying this test. We really did a good job.

We took everything visually we could into account, because when the mother had first called me, I really couldn't think of anything else visually that we could have done to the test. But because of that partnership and that trust that we had, I thought, well, she's been right in the past and the parent has some really good ideas about modifications in the past, so I'm going to just go forward assuming that there's maybe more we can do and that we don't know all the answers. And just arriving at those modifications together made all the difference for that student. And she got high honors that semester.

That's amazing, and just a small little change, too, to help her.

Right, right.

That's amazing.

And so I think sometimes we just we think of collaboration as just at the PPT. We see the parent at the PPT, we present them this 30 page document. Here's your child's program. And we worked really hard on it, what do you think? I mean, it's just that's-- and it's good that we have those meetings, but I think I'm much more comfortable when we're going into that PPT meeting and I don't have any questions or concerns or anything, because I know that the parent and I have worked so close on that program, so closely together on that program throughout the year that there's no surprises in the PPT. The program that we're presenting in the PPT has been a shared product of our partnership throughout the year. So it's just a PPT meeting that is just a natural culmination of that, rather than any once or twice a year meeting.

So it sounds like it's good advice for teachers to take it down to meeting with the parents more often and talking with them.

Yeah. And I think it could even be-- sometimes, schedules can-- people have mentioned that it's difficult with the parents' schedule or my schedule, but it could even mean the form of taking a-- let's say sharing a Google Drive or a Dropbox folder where the teacher puts in ideas, the parent responds.

This year, we had a team-- one of my teams share a Google Drive folder and had Google Docs in there. And what we would do is we have a Google Doc template with a table. And in the left column, well, we would click pictures of assignments that the student had gotten in class or that they had taken home. And then in the second column, we would write what's going well with this, what was adapted well. And then in the third column, what could be adapted better for next time with an assignment like this?

And I filled it out sometimes, the parents filled it out sometimes. And it was just a way to invite that collaboration on a continuous basis, rather than just sending things home and hope that you don't get a email saying that things need to be more adapted or something. It's really just trying to foster that continuous collaboration.

Very interesting. You are a published author. Can you tell us about that experience?

Sure, yeah. So I wrote chapter 4 for Christine Roman-Lantzy's newest book on CVI. It's called Cortical Visual Impairment-- Advanced Principles. And that's out through American Printing House for the Blind. Yeah, I'm really thrilled to be able to contribute to this book. Working with Christine Roman-Lantzy has been one of the highlights of my professional career.

The chapter is about the "What's the Complexity" framework that I've developed. And I just owe a lot to not only Christine Roman-Lantzy's Nancy's work, because it's really based on her work of the 10 characteristics and the CVI range, but also her generosity and support as a mentor over the past several years. In 2013, myself and some of my colleagues invited Christine Roman to come to Connecticut to give a three day workshop on CVI.

And I remember showing her this. I brought this one page document with me that I had started using with one of my students to help the team understand complexity. And it was called "What's the Complexity." And it was just one-sided, one page, and it had, I remember, a thermometer on it with the rating of minimally complex, highly complex, only I think I had used numbers at that time. I think it was a 1, 2, 3, or 4. And there were a little emoticons, little emojis for each level of complexity.

And I remember showing Christine. And she just looked at it and said, I think you've really got something here. You should keep going with this. And I was really-- it just really meant a lot to me to get that feedback from her. And so I kept working on it, and I kept developing it, and trying to use it more and more as a tool for not just the first team who I had started using it with, but many of my teams. And it kept growing and growing. And I kept, maybe every few months or so, sending a latest version to Christine via email. And she would get back to me and encourage me and everything and give me feedback.

And now, it's a much bigger document. It's basically gone from that one page to being a comprehensive framework for designing an accessible school day for kids with CVI. It's really meant to help guide teams systematically through that process. And really, it just evolved because of, I think, two things. One was my partnership with the families of the students who I was using it with, and just their inspiration and their desire to always want the best for their kids. So that was, I think, one driver. And then the other driver was Christine's encouragement and mentorship and her partnership over the years. And so I just am really thrilled to be a part of this book and to have worked with her.

She is amazing. And I know from the times that I've worked with her on her courses with us, she always has time. And you wonder how she manages. You know she's busy.

Right, yeah, yeah.

She always makes time, too. And so it's quite wonderful, because, for me, it helps me move along with her course. But for you, she does take the time to say, you've got something here.

Right, yeah, absolutely.

Yeah, it's great. What do you think is the next big step? Or what will take place next for CVI?

OK. Well, I can really-- when I think of the future of CVI, think of really three things that are in my vision for our field that I hope will happen. I think one of those dovetails with what I was talking about with partnership with parents. I think that we as a field-- we as a CVI field, but I think the educational field in general could really benefit from looking at what does a true partnership consist of and re-examining how we partner with parents, and maybe taking it to a new level.

And I would love to see some kind of a framework developed for parent-professional collaboration. And maybe that's something we can start in the field of CVI that would benefit services for our children with CVI as well as others in the educational field as well, because I think when parents on a national level, and also on the level of individual students' teams-- I think the key to moving forward and doing better for our kids with CVI is going to be that partnership between parents and professionals.

The second thing is I think that I see in the future that all of the TBI preparation programs in the universities will have a dedicated course on CVI and will have a much greater emphasis on CVI. I think over the past several decades, there's been a paradigm shift in our field from ocular visual impairments to CVI, meaning that CVI is such a high proportion of children with visual impairments now. And I think the current curriculums at the university levels reflect more of the old paradigm than the new paradigm. And I assume that it's really difficult to come up with that balance and to change things, because we still need to make sure that we're serving kids with ocular visual impairments just as well. But somehow, we need to incorporate and give more weight CVI in those curriculums as well.

And I think the final thing that I see is that I see hopefully more unity in our field, in the CVI field. I think that there-- as in a lot of new fields that are emerging, I think there tend to be different schools of thought. And one of the things that has helped me-- I know in our field, in the CVI field, there's the cerebral visual impairment approach and school of thought, and then there's the cortical visual impairment approach and school of thought. And there's different bodies of literature that are using different sets of language and have slightly different approaches.

But what's helped me-- and this is something that I meant to mention earlier. But what's really helped me feel like I have a much better understanding of CVI than I initially did, and what's helped me better serve my students is really delving into both of those schools of thought. And what I've seen is a lot of overlap in a lot of common ground. And I think, more so than not, these two approaches or schools of thought really, really confirm each other and support each other, rather than the other way around.

And so I see more and more integration and more of, I think, an understanding of CVI that will have a deeper appreciation of the differences certainly between the two schools of thought, but also what they have in common. I know that when I look at-- to use an analogy from what we know about vision, when we look at an object and we use both of our eyes to look, we're looking with two slightly different perspectives. And when we send those two slightly different perspectives back to our brain, it creates three dimensions, right? We see that object in three dimensions and with depth.

And I think when I've looked at CVI from two slightly different viewpoints-- one cerebral and one cortical-- I feel like I get a much greater sense of three dimensions or dimensionality and a much greater sense of depth and understanding than I would have otherwise. And it helps me support my students. So I think, as our field moves forward, it's going to be stronger when we can integrate those two schools of thought.

As you've shown with parents, having that relationship with the parents has only proven to be better for the child. It certainly should work the same as professionals get together.

Right. Yeah, absolutely. And I think if I can just share an observation from the Perkins Colab, from this fall, I think that that was where professionals from all over the world got together and really of addressed this question of what needs to happen to support our students better with CVI. And I think we came up with something-- I think we generated close to 100 drivers or items that needed to happen.

And as I was going through those informally by myself following the Colab, I think I identified something like 90 of them that I felt were shared convictions between all schools of thought in our field, and maybe 10 fewer that might have been points of disagreement. But I think really focusing-- if we can focus on the vast majority of areas where we have common ground, I think that'll make it easier to disagree on the areas in a constructive way, where we disagree. But I think when we really work from that common ground, I think it's going to make everybody in the field better off, especially the students.

Absolutely. It sounds like you're headed in the right direction.

Oh, hopefully. Well, I think Perkins, through the CVI Colab and the CVI Symposium, the way it's structured this year-- I'm excited, because I think that what Perkins is doing is really putting the structure in place to facilitate that kind of dialogue and that kind of collaboration across disciplines.

Well, Matt, thank you so much for taking your time to talk with me today. I really appreciate it.

Yeah, you're welcome. Thank you very much for having me on. I really, really appreciate being here and just being a part of-- I think Perkins is really doing a lot to further our knowledge about CVI. And I really appreciate getting to be a part of that.

[MUSIC PLAYING]

Thank you so much for listening today's podcast. If you are interested in learning more about our courses, self-paced tutorials, and webinars, please visit their website at www.perkinselearning.org. Thank you so much.