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Title: Awe and Wonder S5 E6: Kathee Scoggin & Emma Packard

Sarah Kinsella
Welcome to the “Awe and Wonder” podcast. We’re in Series 5, talking about vision. I’m Sarah Kinsella.

Brenda Del Monte
And I’m Brenda Del Monte.

Sarah Kinsella
And today, we’re joined by Emma Packard and Kathee Scoggin. Welcome, you guys. Thank you for joining. Yes, thanks for asking. Emma has degrees in special education, emphasizing teaching students with low vision and deafblindness, and she now serves as the teacher of students with low vision and blindness, as well as an orientation and mobility specialist for the Snohomish School district here in Washington, alongside her role as a deafblind specialist for the Washington Deaf Blind Program. And Kathee is a consultant to the DeafBlind Program here in Washington state, and has over 40 years of experience as a teacher, assessment specialist, principal, educational consultant with children, birth to 21 with combined vision and hearing loss, including deafblindness. There’s just so much experience between the two of you and we’re so excited to tap into some of that experience, specifically around students who have combined vision and hearing loss. Emma and Kathee would you like to introduce yourself a little bit and add anything that I hadn’t already.

Emma Packard
Sure. As you said, I hold a few different degrees, specifically working with students with low incidence disabilities as a teacher for students with low vision and blindness and a teacher of the DeafBlind. At that point I was in the classroom for about 10 years working with students with moderate to severe impact, before transitioning to my current role in the Snohomish School District, as the teacher of students with low vision and blindness, and then I’ve also worked for the Washington DeafBlind Program since 2007, providing support to teams working with children with deafblindness, and recently have taken on the role of helping the program develop professional development.

Sarah Kinsella
Great. That’s an important role. Kathee, can you tell us a little bit about yourself?

Kathee Scoggin
Sure, I came into working with kids with combined vision and hearing loss through a back door. Like many of us do, and I started out working with deaf kids and I noticed how frequently I have students not only wearing glasses, but who glasses weren’t helping them visually, and they were greatly impacted. And so that’s where my interest grew, and I went back and got a master’s degree in vision and emotional disabilities. So, I think what happened was I as a teacher for 12 years, I noticed that I had to come up with different ways to connect with those students because so much of the training in that classroom for deaf children was visual. And so, I started looking at the fact that some of those kids have some use of the auditory that was better than I had expected when I read records. Records can sometimes deceive you, both ways. And so, I think that is the piece that I started learning and wanted to work with those students and I ended up becoming a principal and was able to impact more kids because of some of my background with vision, not just the classroom teacher of the students I had.

Sarah Kinsella
And you’re now retired, but still busy. Yes, you will work with the Washington DeafBlind program. Can you tell us a little bit about that program?

Kathee Scoggin
Well, I was a Co-director with Nancy Hatfield for I’m not even sure how many years. But when I moved to Washington State, I got a job as the person on the east side of Washington who would work with students who had deafblindness or had a combined vision and hearing loss. And so that program looks at birth to 21. They provide assistance to the families as well as the school districts, when asked to help figure out ways to help that student learn. And obviously the biggest issue is communication for those students. And concept development – they don’t have the vision and the hearing to develop all the concepts we do, because we do have vision and hearing.

Kathee Scoggin
And therefore, it really impacts that child’s ability to develop a concept and get a real sense of what something is. I think the other thing that Emma and I work with all the time is that these students learn very little incidentally, which, you know, research tells us 80 to 89 to 90% of what we learn is incidental. So that really puts that student at a disadvantage. So, on the project I’ll assist in getting information to the families as well as the school districts. We will provide training if requested. We will provide individualized TA for that specific student because each one is so unique. I mean, I don’t think I’ve ever met two children alike, ever. I don’t even care if they have no disabilities. They’re the same as anybody else, so this definitely speaks to this group of students…

Brenda Del Monte
Exactly.

Kathee Scoggin
…people to get involved and to look at what’s the team that’s around that student that we can work with to just work directly with the teacher or the intervener, which I’ll let Emma say a little bit about interveners, you know we look at. And that’s not enough. It has to be the physical therapist, the occupational therapist, the speech and language therapist. The nurse may be at the school, the principal. The janitor. I mean, it’s amazing. The people that can be involved with this student as well as the family and brothers and sisters are huge… grandmas and grandpas, if they live nearby, are huge, it helps for us to find out what does his child like? What doesn’t he like? And when I say he or she. I just mean both, sure.

Sarah Kinsella
You’re speaking our language, we love collaboration. We love that. That’s what we talk about all the time. That’s really where it needs to be. Before we talk about the intervener, because I would like to hear more about that. You mentioned TA and I just want to say that’s technical assistance. So, if a family or someone in a school district listening perhaps, is needing support with their student who has combined vision and hearing loss, they can contact the Washington DeafBlind program to get support.

Emma Packard
Our web page has a request support button.

Sarah Kinsella
Great. And we’ll be sure to put that in our description. And then are you folks familiar with other states, if that’s something that people listening from other states can also find?

Kathee Scoggin
Yes, there’s a DeafBlind project in every state. There are a couple states that share the information, but they’re available to everybody.

Emma Packard
Great. Thanks. National Center on DeafBlindness has information if you’re…if you are listening from another state and would like to get in touch with your state deaf blind program, if you Google National Center on DeafBlindness, they have some information about how you can go about that. That’s great.

Kathee Scoggin
Nationaldb.org.

Sarah Kinsella
Thank you very much. We’ll add that to you. So, Emma, what is an Intervener?

Emma Packard
So, an intervener is a highly trained one-on-one professional, typically a para educator. From somebody who has received training, specific to strategies that are used for a child with deafblindness, the strategies that we use are distinct and very different. When I went through my teacher prep program, it was for students, my first teacher prep program was for students with low incidence disabilities, and I didn’t learn about any of the strategies that we, I have since learned about since receiving technical assistance from the Deaf Blind program and then and then working with them. In Washington state, we have 5 credentialed interveners, nationally credentialed interveners, and we have two about to complete a program through Central Michigan University. So, it’s an area that is growing slowly. But we’re excited because it provides the appropriate support for a student with combined impacts to vision and hearing.

Sarah Kinsella
Wow.

Brenda Del Monte
So what? What are you looking for when you see a student in like, like the paperwork, maybe has hearing loss, but then you’re like, hmm, what’s going on with the vision… or the paperwork says vision loss… that you’re like, wow. I feel like there’s the hearing is not there either. Or whatever, right? What? What are the… What are you looking for? To go? What is their relative strength? Is it vision? Is it hearing? Is it tactile? I know you’re going to kind of use all of it if they have any. Any vision, any hearing, any. But what do you… what are some of the telltale like: I think this might be a dual diagnosis here.

Emma Packard
The first thing I do is reach out to the family and find out, you know… Is there something I’m missing? Is that..you know so often a child may have a diagnosis early on and through the years it kind of gets lost or forgotten and isn’t reflected in paperwork. So maybe by high school it’s not remembered that the child maybe has a vision or hearing or both…

And so I typically start with the family, just to do a little research on that end. Sometimes it’s just I suspect something is going on. You know there’s a real difference between the information that we take in through our senses and being able to process that information. And so, you know, we may hear comments like well, “they can hear” but are they understanding? Are they processing what they’re hearing and that can be a different conversation. We use an assessment called the use of sensory channels when determining what channel is their strongest sensory channel, even if the child has combined impacts to vision and hearing. It still could be that vision is their strongest sensory channel, so it doesn’t, having that diagnosis of deafblindness does not necessarily mean that those aren’t usable senses for the child.

Kathee Scoggin
There’s a mother of a young man who has CHARGE {syndrome}, and she came up with the idea of her son was in a box and we called it the “box of deafblindness.” And the idea was, what does he have available and how do I get him to open the box? Because I can’t open the box, I can only set it up so that he will want to open that box and come out and learn things? And so that’s another tool that we use looking at records and asking questions about, you know, what’s this child’s sense of touch? Is he tactically defensive? What does he do with his feet? Because sometimes the feet start out being much better explorers than the hands do, so we start and look at all those different senses and put that together so that we can start to say, OK, yes, there is some usable vision. However, here are all the conditions that have to be there for that child to be able to use that vision. And that doesn’t always happen. So, what do we do in the situation when all those four things aren’t happening? And so, the sensory channels use form that Emma was mentioning is one we like to use because people sometimes have the idea that this child hears more than he does because he’s not comprehending and interpreting what he hears or visually they say, “oh, no, he sees everything.” You know, “he runs around…” and I’ve worked with students who, that’s the only way they see is by running around… the minute you stop them, they hardly see anything, so there’s so many things you have to look for then figure out how is this child going to learn. How is this child going to learn how to communicate?

Sarah Kinsella
That profile, that sensory profile, we’ll link that. We’ll find it and link it because that sounds like it could be useful for many people on the team that’s SLP or an OT. That’s really great.

Brenda Del Monte
So, what are four or five things that you’ve learned that are important when working with students with the combined vision and hearing loss?

Kathee Scoggin
I think for me relationship, relationship is everything. If I have a relationship with the student or whoever’s working with this student has the relationship, then I know that that child’s going to be able to do the very best they can. We set that up for them. So, I think relationship is way more vital than what I ever thought before I went into working with students with combined vision and hearing loss. Certainly, concept development and I mentioned that briefly before, they do not know the concepts. How do you know how big an elephant is? Well, because you see it with the man standing by it or a, you know, a car next to it or something, and you get the idea that this thing is huge. Well. I can’t bring an elephant into the classroom for the child to learn that the elephant’s that big and so the concepts have to really be built and we have to think about concepts we’ve never thought about needing to teach because the child came to school with those concepts. And these children don’t necessarily do that… could you?

Sarah Kinsella
Give some examples of how you do teach concepts.

Kathee Scoggin
Yeah, one is in the beginning. There’s very little use of books and pictures obviously because for most of the students, they’re not going to see it well enough, and they may not be able to see the perspective even in the photo. And so, you know, that’s one thing I try to pay attention to that there are students who can see the picture, but they do not understand what that picture is until they have the object, until the person is there, until the toy is there. And later as that child develops… the concept of what those toys are or what a pencil is, what a crayon is. Then we can go ahead and see “Gee maybe they will see a picture of a crayon and know that’s a crayon.” But the issue is in the beginning they don’t see the connection at all. And so, we have to do a lot of things. We have to do activities, activities with water, water. Eggs, you know, we scramble them, we hard boil them, you know, we eat them, we cut them. We do all the things we do with all different kinds of eggs. We can’t just do egg and say, “this is an egg,” because all they’re going to see is the shell, and they’re going to feel a smooth shell, they’re not going to feel the white and the yolk inside the egg.

Kathee Scoggin
We have to do a lot of stuff that other people would never think about. They’re busy thinking about reading and starting to recognize letters, and we are wanting them to get the idea of what it is.

Sarah Kinsella
And you’re providing experiences to learn the language too, right?

Emma Packard
Exactly, exactly. I think about the consistency that is required for a child with deafblindness. You know, they’re not, as Kathee said, not taking in incidental information in the same way someone with typical vision and hearing does. And so they’re not…

Sarah Kinsella
Yeah.

Emma Packard
…able to anticipate what’s going to happen, you know, in their day, within a certain activity, how someone is going to interact with them, communicate with them, provide prompting. So, consistency is a huge piece for our students, with inconsistent access to vision and hearing.

Kathee Scoggin
An area I never thought about was, “is my student available to learn?” and under what factors, that are both internal because many of our students have complex health needs? And the reality is, is internally, how are they doing and are they available for learning or are they too exhausted? Is the medication affecting them? The meds they are on, is it? Are they too hot? Are they too cold? All those things? Whether or not they’re internal, or whether or not they’re external {factors}, such as the lighting. Is the lighting OK in the classroom? Is it too noisy for the student? All those external factors too that I really have to pay attention to, especially when I go in to observe in the classroom and the class is very noisy. The students are noisy, the staff is noisy, and this student maybe has some usable hearing. But not in those conditions. And so how do I find a place for him to be quiet with somebody as he’s learning certain things. So I think the availability to learn – I pay way more attention to than I used to as a teacher.

Brenda Del Monte
It seems like what’s important with probably all of our populations, but in this one in particular, is recognizing what is the purpose of what we’re doing in this moment, right? So, there’s a time to do pull out, to reduce all the distraction, because that’s what it’s going to take to learn. But life doesn’t happen in isolation, right? So, then there’s also this time in letting them experience the chaos that is life, but you’re not taxing the cognitive system by adding a learning experience on top of that. Right. So, it’s like looking at what, what do, what are they learning? Right. They’re every minute of the day that they’re awake. They’re learning something, right? It’s like, what am I teaching when I’m doing this? What am I teaching when I’m doing that? What am I actually teaching when I’m doing this in this environment and it’s like you almost…it’s almost like a lot of self-reflection as a teacher, about like… if I want to teach this for them to get this concept, I need to minimize distraction for them to generalize this concept, I need to introduce some distraction, but maybe not all of it. Maybe I introduce some visual distraction. Then I maybe introduce, right? So, it seems like it’s like this methodical way of looking out. Everything I do teaches something. Every environment they’re in teaches something. How do I kind of do the dance of making sure that I’m providing the right environment for that learning objective?

Kathee Scoggin
Yes. That’s very well…

Brenda Del Monte
Yeah, that’s a lot to think about.

Kathee Scoggin
Oh… my gosh, yes, and you can still forget elements.

Brenda Del Monte
Yes.

Kathee Scoggin
You know it, you’re not a perfect human being. You don’t, you know you don’t do everything perfectly. I mean, I think mistakes it’s, you know, frightening. I’ve had dreams about apologizing to kids. Like, I’m sorry I didn’t know more about this at the time.

Sarah Kinsella
Right. That must have been so overwhelming. Yeah. Yeah, yeah.

Brenda Del Monte
I know. Anyway, actually it’s kind of comforting to hear that you made mistakes, Kathee, because I know you’re just such an expert in the field. And I mean, I think you were. Weren’t you instrumental in some of the modules created? And was that in Texas or?

Kathee Scoggin
It was nationally the NCDB actually arranged to have 27 modules developed by people all over the country, and actually a couple people from outside the country to help interveners learn about how to be an Intervener.

Brenda Del Monte
And they’re excellent and every time I’m looking at one, I learned something. And so it’s kind of comforting to hear that. You, you didn’t, you weren’t born that way and that you know that that we all can learn, right, that we all can learn just like even those modules show they’ll focus on like one very small element that I’m like… man, I never thought about that. Or whatever. And so, it’s just so helpful to look at this piece by piece.

Emma Packard
Yeah, I was just going to build on what Brenda said about what is the purpose of, of what I’m teaching, but also, is this meaningful for the child? And is it motivating for the child learn?

Sarah Kinsella
Mm-hmm.

Emma Packard
You know when we’re actively engaged and what is gonna have us actively engage something that is meaningful and motivating, too. And so, I think early in my career, I really had to kind of dig deep and think, you know. Is, this meaningful for this child and really reframe my thinking around some of the things that I thought were important for the child to learn, but really weren’t.

Sarah Kinsella
Right? Or the way we’re doing it like we will often talk about? Are we teaching this or are we testing this? Is this an interaction you know?

Sarah Kinsella
Just because I said “point to red,” if that’s not helping your relationship with that child, but you said is so important, right, they can kind of be like, OK, I’m done with you motivating.

Brenda Del Monte
So, when you when you think about deafblind. I think about tactile systems, but I also know that like the basically GI Joe size of an elephant isn’t actually a tactile system for elephant. Is it? Because of the size that it is and it doesn’t feel like the texture and it doesn’t hold a lot of meaning. So, I think sometimes we can get overzealous as SLP’s and be like, Oh my gosh, we’re gonna do a Peck system that’s tactile and we’re gonna find the mini objects of all the things.

Kathee Scoggin
It gets open in a book.

Brenda Del Monte
Yeah, some little… I remember I had a, almost like a fishing tackle box at one point with miniatures of all the things right, thinking that I was like, OK, here we go. Now I have object representation if that’s where the kids at and that might have worked for kids that were… didn’t have… that had perfect vision and hearing where they just needed the object… I don’t know, but what do you? Where do you start with tactile systems?

Kathee Scoggin
Well, part of it is we have to realize that, if that is that what that child wants, like I met a little 8 year old deafblind boy and he was going to be a weatherman on TV. That was all he cared about was the weather.

Sarah Kinsella
OK.

Kathee Scoggin
And you know how, you know, you talked about trying to make something touchable, like the wind, and forget it, you know, I mean, you really have to think about how, how do I set that opportunity up for him that he really understands what the wind means when we go outside, when it’s windy, we go out and maybe we have a flag up. And the flag is totally down because there’s not one bit of wind, so the child can feel that flag and no. Oh, that means there’s no wind. So that whole idea of… if he likes dinosaurs, the question is, what is it about dinosaurs that is meaningful to him? Is it tactile? Is it the touch? Is it being able to hit the rubber dinosaurs everybody buys for their kids, you know, and whack and… he’d whack anything, as long as he had something to whack with. You know, and you have to look at what it is because if I start thinking about, well, Gee, how do I teach? It was billions of years ago and all this stuff, he doesn’t know that. So that’s not what is attracting to him to dinosaurs.

Sarah Kinsella
Of course.

Kathee Scoggin
And you know, so I think the point that you made, Emma, about how is it purposeful to him? Is it functional for him or her? That’s really the issue. And then what is it about that topic that they are so fascinated by? And I can go all off. I mean, I could have developed a whole semester on dinosaurs, but it didn’t touch anything that that child cared about. So, you really have to watch that student. And I think observation, both Emma and I would say the observation is so crucial and especially the observation by the teacher, the para-educator, the people that spend the most time with the student. If the parents both work and the child comes home to Grandma and Grandpa.

Sarah Kinsella
Sure.

Kathee Scoggin
I want to talk to Grandma and Grandpa because they’re going to know things that the parents don’t know. Just because of that as well as the parents and the brothers and sisters. And you, if you want to find out what that child doesn’t like, the brothers and sisters can tell you because they’ve used to get that child away from them and leave them alone for a while too. So, you know, I think that’s it. And I think the other thing that I wanted to just say about what is important is waiting. I have had to learn to count to 10 in my head, 20 in my head, 30 in my head before I try to rephrase or reconstruct what we were trying to do. Otherwise, that child will never be active. He will be passive the rest of his life waiting for people, you know. A good example… I’m thinking of a deafblind boy in Spokane and he was so used to people asking him questions and him not initiating communication that he got to school one day and I looked at him and I thought, well, he doesn’t look very good. And he said, “Mrs. Baker. Does…” (and he said his name) “do I, do I need to go home?” And she said “well, do you need to go home?” He said, “Am I sick?” It was like I he had communicated through questions because he was so used to somebody always initiating everything. And so, if you don’t wait, you never get initiation.

Brenda Del Monte
I think you make such a good point there, I think learned passivity is real and when we don’t wait we create that and when we sometimes we are we just think we’re being helpful but we’re going through that prompt hierarchy every five seconds. What do you want to do instantly? Do you want to do this one or this one? All of a sudden, it’s bimodal, and then it’s like no response, yes or no. This one, like all of a sudden, we’ve. And if they do nothing, we’re going to pick one anyways and it’s been 10 seconds. When I’m coaching people, I usually say count to 30 just so that they’re quiet, that I can, so that even if I’m going to interject with the prompt before 30, I want them to not. And then I want them to also feel what 30 seconds of wait time feels like, what it…

Kathee Scoggin
Exactly.

Brenda Del Monte
Like what it looks like because wait time also means that you are quieting your voice, you’re quieting your body, you are not filling it in by saying the question again. That’s not part of wait time… saying it again. You’re uncomfortable, but they’re getting somewhere. They’re now… their wheels are turning and you can see it on their face.

Kathee Scoggin
What is the intake of their breath? Are they feeling stressed? So, we all know that when we’re feeling stressed, we don’t think it’s clearly there. You know, it just doesn’t happen. It’s clearly for us. And so, I really pay attention to gosh, did I just kick the kid over into stress mode? And now I’ve got to undo that before we can go ahead and do anything else. And I think stress is something that, sometimes with some kids, it’s very hard to pick up. With other kids, it’s very simple and it’s very easy. But if you learn that child and you observe long enough, you will see where the signs of stress are.

I’m thinking a little girl that I worked with who had a vision loss and a hearing loss, and I would ask her a question. What I didn’t know was that underneath the desk, her hand was starting to sign what she wanted to say, but she wasn’t saying anything. And one day I dropped my pencil, and I went to pick my pencil up and I saw her hand moving with the sign and so the next activity we did, we sat next to each other so I could more easily read what she was doing, you know. And then I would slowly, you know, I’d start signing down here. You know, you start to model your students. That’s another technique that I use is I model them, instead of them modeling me, so I could see what’s going on and what does it feel like to be doing what they’re doing? If they do a behavior that I can’t figure out… why? Why are they doing that behavior? I do the behavior so I can figure out. Gee, that feels kind of good or gets rid of stress or whatever.

Sarah Kinsella
Sure.

Emma Packard
I think that’s another reason why quiet wait time is so important. Some of our student’s communication is so subtle, and if you’re just busy looking for the way you think a child might respond, they may be communicating in other ways. Some of our students, it’s a slight movement of a hand or a facial expression, and we’re too busy kind of filling that space with talk and prompting. We’re missing an opportunity to reinforce some communication. I worked with an SLP, thinking about the quiet wait time, I worked with an SLP who shared that one of her strategies is to count her teeth with her tongue because she can’t talk during this. That’s just such a great way to do it, because I, you know, I’ve been in this field for 28 years and I still, I… I need to sit on my hands sometimes or bite my lip because the urge is to fill the space with, with talk and prompting. And we’re just really impacting our student’s ability to process and formulate and execute a response when we’re doing that.

Brenda Del Monte
Well, and you know that’s sometimes how I find a switch site too is if I’m talking to them and I… I’m, Iisting a few things that they like. I’m like, “OK, I’m wondering if you want to… Do bubbles? (my wait, right.) The ball? Or if you want to go outside? And one of their hands goes up, right, and you’re like, oh, I wonder if I put a switch there that says that’s the one because you naturally kind of raise your hand. By the way, I’m doing a large movement on the screen, but honestly, sometimes it’s just these, like, things like this, right? Sometimes it’s just like the little finger goes up and you’re like, did you see that? Did I make that up? Like, but again, if it’s under a desk then you’re missing it. Right. So, it’s like sometimes that observation is like, especially with our kids, with CP and complex bodies. And you don’t even know what’s voluntary movement and what’s not. But then you see these little movements, right. And you’re like, huh. Can I shape that to a Switch site? Can I give them a way to control their environment? Because that looks like they moved on purpose.

Emma Packard
Completely responding as if it is consistent to shape it into something that does become intentional.

Sarah Kinsella
Right.

Kathee Scoggin
And I’d like to go back to something you talked about, Brenda, that it the issue of miniatures and I think that goes along too with how do you devise a communication system for a student who has a combined vision and hearing loss that works for him cognitively, conceptually. Every way. Physically. You were just talking about, you know, would this switch even work? Would I have to have a different kind of switch because that child can’t press that hard and all those things. And I think one of the things that Emma and I have talked about a lot and I and I’m sure both of us have talked to other people who work with kids who are deaf blind, is that oftentimes what we see with communication is that somebody wants to grab an iPad and start doing something with the child immediately with the iPad instead of finding other ways to communicate and looking at how they communicate and shaping that communication into something that is understandable to all of us, instead of bringing and putting this device in front of them. And you know a AAC is not just devices. It is anything you can come up with that is going to help that child be able to communicate. So, the idea of having parts of objects or the exact same kind of spoon, which will mean “EAT” instead of a picture on an iPad that might have 4 pictures on it. And there’s nothing wrong with all the communication, electronic communication systems that they devise, they’re marvelous. But I think very often for our children, who are… who have vision and hearing loss, that is not where you want to go. But it’s easy. And as many things as teachers have to do in their classrooms these days, they’re going to look for the easiest way. And I understand that, I would be too. But I really want to just reiterate that the idea of getting an electronic device is not necessarily where you want to start.

Brenda Del Monte
A communication system rather than a device like what is the…what is the best system here and that may or may not be a high-tech voice out, but I feel like Emma, you wanted to add too…

Emma Packard
Well, it may also be different things. It may be to communicate one thing that the child is using facial expressions and to communicate something else it may be a symbol or a whole object. You know, we all communicate in a variety of ways and sometimes we get so focused on, nope, we’re working on this symbol or pressing this button, and the child may be communicating, you know, through a gesture or facial expression. Yet we’re, you know, kind of forcing the issue of using a device or, you know, a simple system. So.

Sarah Kinsella
And it might be that a device is something the student will have at some point for some communication, right? But you’re saying it’s maybe not always where you want to start. Don’t just go there because it’s easy.

Kathee Scoggin
And there’s so many ways that you can communicate without even opening your mouth without even signing one sign. There are so many ways we communicate. Constantly. I mean, when you’re out to dinner in a noisy restaurant, sometimes you end up doing things where you communicate with the smile or you communicate with pointing, or you communicate with a different kind of gesture. And I think those are things we’re going to look for because those are socially acceptable by anybody. And that means that we have opened and widened the number of people who could interact with this child because they have some of those social gesture skills that anybody would understand.

Brenda Del Monte
I also think that sometimes if you go straight to high tech, the child’s only success with tactile support, which actually is not independent access of communication. And also, can create some passivity and sends a message that I’m going to let you control my body to make, to make choices. And I mean that, you know, we have to think about again. What is the if they cannot access this independently, what are we creating are we creating passivity? Do we just have an agenda that they’ll touch a certain button a certain amount of time, and we’re going to help their hand do that? But it’s not actually communication at all. And I think that’s where there’s a gut check on our own observation of like, what am I teaching and again, everything we do is teaching something. What am I teaching here with this high tech? And is it effective and is it actually independent authentic communication? Or is it something else?

Kathee Scoggin
I’d like to share just the story of a young girl that I met in Arizona, and she had infant Paget’s syndrome. And so, it was like the first, this was years ago, like the first major device. So, you can imagine how big this device was in the beginning. And everybody was so excited, so was I, about this opportunity and what we found is by the use of that device, she started to sign more, and she was more understandable for sign language because she didn’t like that device in between us. And that was fascinating to me. And it was one of those things that, you know, you have those times in your life when you see something or you’re with somebody and something says something, and you go – “Wow, I never even thought about that.” She did not want that device. She wanted to be able to look at you and be close enough to you that she could communicate with you. And so, you just reminded me of that.

Emma Packard
Well, and the communication system that is consistently available to her, right? She can sign when the need arises. Sometimes I see, you know, children learning to use switches to indicate yes and no. But the switches aren’t consistently available. So maybe an adult is placing it on the child’s tray in the moment and the child just knows “Oh, it’s there, so now I hit it” and then the button goes away. And I’m always encouraging people to think about what, how you know is the child really learning that this button is communicating something and has meaning? Or I just know that when it’s put in front of me, I hit the button and it goes away.

Sarah Kinsella
Yeah. We, we always try to encourage a non-tech yes and no. Right, and people you know… whatever it is for that that child may look very different but…

Brenda Del Monte
Yeah, mostly the most reliable. Yes. No. When your, when your facial expression is yes and no, or you know what I mean? If your body is yes and no it’s pretty reliable and I, you know, I’ve had girls with that, that, they are super smart they spell on their devices. They do all these things and then we put “yes” up there and they’re not, they’re about 80% and I know they know “yes” and “no.” But then you know, they’re like, I don’t know, maybe this smiley face is the right answer, right. Or I’m attracted to red so I’m going to say “no” like, you know, we don’t even know sometimes why we have yes kids and no. Kids, when, we’re providing that level of stimuli. So, I do think that honoring the body language that is innate for that child. I had a kid that would always kick his right foot for “yes” and the whole team wanted that to look different because it wasn’t universal, and people weren’t going to know that. And you know what? No, that was his, that was his yes and you know, he’s going to kick you if you make him do something else.

Brenda Del Monte
And it’s like you get to be you. That’s the way you’ve always done it. That’s where that was a voluntary movement from the beginning. Like you were saying, Kathee, sometimes those feet especially in those little birth to three kids they can do all kinds of things with their feet and you see people wanting to shape like, well, we’re not going to use your feet. We’re not going to. I had a device user that used his toes his whole life. And with the device put down by his, by his feet. We didn’t. We couldn’t believe he could even see it. It didn’t matter. He used his big toe. This was in Seattle. He never wore a sock or a shoe on his right foot. And all of his communication was with his toe. And, you know, he was an adult when by the time I ran into him and he was like, yeah, no, I’m not doing that. This is it, you know, so it’s like you also just kind of honor that. This is what, you’re, this is what you feel like you have the most control over, so this is where this is what we should begin to look at the AAC system through an access method that you feel like you have the most control.

Kathee Scoggin
Exactly, that control is so huge, if we all think about our lives. We want the control is the issue of it, you know, and my husband and I would drive, and it was hard for me not to be a backseat driver and it’s not that he was a terrible driver. It just wasn’t the way I wanted him to do it. You know, I’m just like, this is stupid. You know, one day I just, I looked at him and I said that’s just really stupid of me. He said, “Oh good. I’m glad you got that.” He needed the control but I wanted it so we all want the control and to respond to the child’s need for control by just being able to kick his foot. You know it’s, as long as everybody knows that that’s what that means. What? What does it matter?

Emma Packard
Of course, we want our student’s communication to be understandable to as many people as possible, but there are ways to share that, like developing a communication dictionary when the child kicks their right leg. That means “yes,” when they do, you know this body movement or make this facial expression. This is how we are reading that and responding to that. There are methods to ensure that people are understanding the child’s communication.

Brenda Del Monte
And even identifying that with the kid like, listen every time it looks like you’re saying yes, you’re kicking your foot. So, you know what? Moving forward, I’m going to take that as a “yes.” And if you do nothing, I’m going to take that as a “no.” Maybe you don’t have a movement for no, but we’re going to take that as an answer, too. No response is a pretty loud response if you’re paying attention, right? Right. So, but you have to be, you have to be metacognitive. You have to be out loud about this, this is what I’m seeing, and this is what I’m interpreting that as, and I’m going to put words to that movement so that we can begin to consistently identify that movement as this word.

Kathee Scoggin
Sometimes what I’ve done if I’ve acknowledged that with the child, then I might be doing this is yes and you’re foot kicking it their the same, yes. OK. And I’ve watched children eventually change over to the sign that I kept presenting to them because I knew they could do that sign, too. You know, sometimes their hands don’t work well enough to do a sign. And that’s not an option.

Sarah Kinsella
We talk a lot about younger kids just because I think you’re beginning to work on the communication and there’s a lot of excitement with emerging communicators. But do you often work with older students who are deafblind and what does that look like? What type of things are you working on?

Kathee Scoggin
Emma mentioned earlier that sometimes by the time they’re in high school, nobody knows that he has a hearing loss because he’s not “deaf.” And you know, there are those problems because then you’re, you know, you’ve been not being able to use something that you had available for all those years. And so sometimes it’s a question of nobody’s done anything with communication because this child can’t communicate. And, you know, there is no such thing as can’t communicate. We are just not watching, is the reality of it. And so, I think with high school students, sometimes it’s difficult because you may be starting down where the two and three-year olds are, because nobody did anything for all those years… they were babysitting him. They didn’t have a clue about what they needed to do. Nobody, you know, he couldn’t sign because he’s blind, so you know we can’t sign. Well, did anybody try tactile signing? You know all those things. And what I saw was especially I’d come in and the kids were maybe middle school age. And I said, well, have you tried signing? Oh, yeah. They tried that for a year. And I said, so if I talk to you for a year, whatever you learn in a year, you’re going to look competent. Well, no, not necessarily, I said. Yeah, you can give enough time. And so, people start all over again when they leave schools because somebody didn’t do enough and long enough in the first place.

Sarah Kinsella
You see that all the time with AAC as well, AAC systems. So, like well they tried this one language system it didn’t seem to work. So, we’re switching to a new one. And they need time and experience with it

Brenda Del Monte
Most of us took Spanish 101 and you know a year Spanish in high school or something. And how fluent are we you?

Emma Packard
Kathee worked with a colleague of mine – she and I went through the low incidence program at the University of Washington. And she talked about her first-year teaching. She had a student that didn’t have a communication system, so she said he or she is fresh out of college and she’s throwing all the tech that she knows how to at him. And there was just no progress made. And so, she went and reviewed his records and was like, well, he’s not hearing and seeing. But she didn’t realize that again, talking about that information, getting lost along the way. And so, then she worked with Kathee, and they developed a tactile system for him. And I think it was in, in high school, maybe his last year of middle school, but high school by the time he graduated, he had 50 symbols that he was using consistently. I think about how much that opened up his world. One of my favorite stories about him, that I tell frequently, but it’s just so touching is that at home he would scoot on the floor to get around the house, and he scooted over to his dad one day with a symbol for his tube feeding, and he handed it to his dad but shook his head and what he was really requesting was the TV. And his symbol for that was the rubber buttons from a remote control. But they had fallen off on the card. And so, he was looking for another way to communicate this. And so, he handed, you know, he handed it to Dad but shook his head. Dad was feeling the G tube rubber and dad kind of pieced it together and said, oh, do you want to watch TV and the student his sign for yes is a very emphatic, you know, clap and that’s what he did. And so, he just… his problem solving within that system was amazing too, I mean.

Kathee Scoggin
Hmm.

Emma Packard
Just the power of finding the right mode for a student and ensuring that you know we’re considering all these access pieces you know.. is a device, and maybe it is maybe an iPad or dedicated communication device is visually and auditorily accessible, but maybe it’s not.

Emma Packard
So, you know, for our children, are they pressing a button and not getting that auditory confirmation of what I just hit or are they even able to perceive 2 dimensional, you know, pictures, let alone icons. Things that you know, I think about the line drawing symbols for, you know, water fountain and that representing drink or thirsty? And I think how many people see that style of water fountain and know that that means thirsty or drink. You know there’s a lot of skills and concepts that go into being able to use something like that.

Brenda Del Monte
Maybe each of you can just tackle one myth that you just feel like, if you leave this podcast today and we just blow one of these things out of the water. What? What do you think, people need to just stop approaching it that way and stop thinking about that way, stop using that vocabulary. What? What are you thinking is a myth that just needs to get busted.

Emma Packard
I think that if a child isn’t using symbolic communication that they’re not communicating, going back to what we were talking about. Earlier look and stop and quietly observe your child and or your student and see how are they responding and document those things. Have conversations with the people that are interacting with the child because our children are very consistently communicating, we just need to be reading it.

Brenda Del Monte
Hmm.

Kathee Scoggin
I definitely agree with you, Emma. I think for me is when I worked at the Arizona School for the Deaf and Blind years ago, we had to show some legislators around and they were talking about how sorry they felt for the children who were deaf and blind and everything. And I looked at him and he said, “how do you do this?” And I said, “Because I don’t see the deaf and blind. I see there’s a child in front of me, first.” And I think that’s the piece that actually almost everything we’ve been talking about is about, looking at the individual and seeing what the individual needs, seeing what the individual understands and wants to understand.

Kathee Scoggin
And I just think if you think this is just a child or a student, however old they are, this is just a person just like me. And I think that is the first thing for me that the myth that this is some poor person who, you know, unfortunately had to have this happen to them… is one of the most horrible things that we do to kids. And if we feel like that’s what they are, then we shouldn’t be in this field. We should be doing something else.

Sarah Kinsella
That individual piece has definitely been a thread throughout all these conversations we’ve had about vision, just looking and communication. Honestly, all of these series, but looking at people individually and respecting who they are…

Brenda Del Monte
…diagnosis is not the person.

Kathee Scoggin
Right. I mean then did your story about the little boy with the right leg, the right foot kicking that? I’ll remember that story forever because that’s such a great example of not trying to change somebody and make it quote “more understandable” to everybody else. And as you said, Emma, there’s a communication dictionary available. Just make it and people will know what that means.

Speaker 5
Yeah.

Kathee Scoggin
We don’t have the time to waste on doing stuff so that they look like everybody else, and I had a parent of a deafblind child say when he was about four, she said, “I don’t want my son to be a second-class hearing seeing person. I want him to be a first class deafblind person.”

Sarah Kinsella
Yeah, you’re right. We don’t have the time to waste, and we don’t have the time waste to not do things that are meaningful for those kids, for all of our kids. Yeah. Before we wrap up, is there anything that you guys wanted to share or anything you, like, I wish they would have asked me this… or any resources that you think would be helpful that you haven’t already mentioned.

Kathee Scoggin
Well, I think the {Open Hands, Open Access} modules for sure. There are two books that I’ve read with children who are not deafblind to help them understand. And those two books are Can You Feel The Thunder, which is a great one about a brother and sister’s relationship and she’s deafblind. And then the other one is Child Of The Silent Night, and that’s a story about Laura Bridgman, who actually lived years and years before Helen Keller ever showed up. Laura was one of the first deafblind kids worked with and that’s an interesting story. And then I was telling Emma that there are three triplets who are deafblind, and the last name of the family is Dunn. And there are some videos on the internet that show those 3 triplets, the only triplets in the world that anybody knew who were all deafblind. And all the different level of deafblindness. And that’s pretty interesting, because they bring up issues that we’ve been talking about, but they bring up other issues from a more personal, family perspective. And I think sometimes we forget what it’s like for the family. And partially because we can’t imagine it if we don’t have a child with disabilities ourselves. I can only imagine, and I know that that’s not going to be the same as what each family is feeling. I just have a lot of respect for families and pay a lot of attention to them because they have understandings none of us have.

Sarah Kinsella
So true. Thank you for those resources. Emma, is there anything else you wanted to add?

Emma Packard
Our website, it has a lot of great video topics and information on different strategies that we use with children with deaf blindness, so I can provide you with that, maybe that’s something that you guys could link to.

Sarah Kinsella
Definitely. We will for sure. We’ll have all these links in the notes on this podcast. And we really appreciate talking with you guys. It’s… it’s just been a joy and so, so fun to hear your experiences and learn more.

Brenda Del Monte
Yes, yes, thank you so much for sharing.

Kathee Scoggin
It’s always great talking to you guys. This is always fun. I always learn stuff.

Brenda Del Monte
All of you. We learn from you.

Kathee Scoggin
Wow, thank you.

Brenda Del Monte
Thank you.

Sarah Kinsella
The contents of this podcast were developed under contract with the Washington Office of the Superintendent of Public Instruction, U.S. Department of Education, and administered by Central Washington University. However, those contents did not necessarily represent the policy of the OSPI and CWU. And you should not assume endorsement by the federal and state government.