TETN 32955 Strategies for Difficult Behavior in DB Students This video is posted online with the following chapter markers: Chapter 1. Introduction - David Wiley, Transition Consultant with the Texas Deafblind Project. Chapter 2. Effects of Sensory Impairment - Unique sensory impairments of deafblindness help us understand certain behaviors. Chapter 3. Addressing Behavioral Concerns - Ways to address behavioral concerns; i.e. assessment of communication intent, discomfort or medical issues, goals to increase communication & information. Chapter 4. Prevention vs. Reaction - Prevention leads to more successful interaction, but requires evaluation of student triggers and preparation of activities/routines. Chapter 5. Functions of Behavior - Behaviors function as a form of communication & most of it is learned through observation. Chapter 6. Deafblindness & Behavior Functions - Unique sensory impairments of deafblindness impede normal observation of behavior Chapter 7. Resources - List of resources online for behavior issues. TETN 32955 Strategies for Difficult Behavior in DB Students Transcript [ Start slide: ] [ Background Music ] Narrator: Texas School for the Blind & Visually Impaired Outreach Programs present TETN# 32955: Strategies to Help Young People with Deafblindness and Behavior Issues, January 15th, 2015. Presented by David Wiley, Deafblind Transition Consultant, for TSBVI Outreach. [ End slide: ] Chapter 1. Introduction David: Hi. Welcome, everybody. Glad you're here. What we're going to do today is discuss the ‑‑ you know, how to think about individuals with deafblindness who may engage in behaviors that are a challenge to us, and some ways to go about planning to help those students with those situations so that that becomes less of a problem for them and for all of us. And in doing that, I'm going to start with a few themes for the day, I guess I'll call them, of the --the implications of the various things I'm going to be talking with over the course of the day. And the first one would be this. [ Start slide: ] That behavior is often a direct result of the issues involved with having sensory impairments. And I think that that's something that we can't ignore. I think one of the things that sometimes happens is that we tend to treat behaviors that people do or professionals who aren't familiar with sensory impairments have a tendency to treat [ End slide: ] situations involving challenging behaviors as ‑‑ it's all the same to everybody. And I think that -- that oversimplifies a complicated situation, and that when we think about the results of sensory impairments, and most specifically deafblindness, where an individual has a -- a different way of experiencing the world and a different way to gather information and a different amount of information coming to them over the course of any number of situations, that that doesn't affect the way that they interact with other people and affect the way that they interact the world. And we have to acknowledge that, and we have to consider it if we're coming up with a plan or strategies to help that person interact in a way that most of us would find more acceptable. So I think that would be the first one. We're going to talk some about how sensory impairments might affect a person's behavior and how important it is to think about those things. [ Start slide: ] A second theme that we would have for the day is that the intervention strategies that we use should be based on taking into account the ability of a child to gather information, understand the environment, communicate, and feel secure. That's kind of what I was just talking about, but I wanted to sort of itemize some of the specific things about deafblindness that affect a person's understanding of the world and how they interact with it. [ End slide: ] And the first one is their ability to gather information. What do they know about what's happening around them? How do -- do they know what their expectations are, how do they know what other people are doing, how other people are acting, their ability to gather information, to understand the environment, to understand what's happening around them, for it not to be confusing to them; for their ability to communicate, or if they have important messages that they need us to know about if there's something they need us to tell us about, how are they able to do that, and if they're ineffective in doing that how does that affect their behavior? Then finally to feel secure, one of the things we're going to talk about over the course of the next hour and a half is the idea of the fact that deafblindness often results in feelings of anxiety, feelings of -- of perceived threat, feelings of just being confused about what's going on. And this prevents a person from often feeling secure. And I think that's something we have to acknowledge. [ Start slide: ] The third theme that I think we'll see over the course of the -- the -- this presentation is that behavioral issues are best addressed through prevention, as opposed to reaction. And that's something that I think we're going to look at real specifically on, if we take into consideration the implications of sensory impairment and prepare for them, that's a better way of dealing with behavior than ignoring those implications of sensory impairment, waiting for a problem to happen, and then figuring out what to do to solve it. And then the fourth theme that we're going to have is that behavior can be reduced by using effective communication and support strategies. Now, I know that there are many reasons for behavior and I'm not naive about it. [ End slide: ] I understand that in some cases behavioral challenges are due to psychiatric conditions or long‑held habitual behavior that a person may have had. It's a complicated thing, and I'm certainly not going to talk about things like psychiatric conditions because I'm not a doctor, and that's sort of not my place to talk about those kinds of issues. But I would say for anybody who is deafblind, regardless of any additional problems they may be having, one of the things that I feel is true is that if we take care, to use good support strategies and work on communication with the individual, and find ways to get them more information, that we will see the incidences and the behavioral issues that we have with them go down. And -- and I believe that's true, and I think we're going to talk about why I think that's true. So I think I'm going to throw the next slide up here and talk about the effects of sensory impairment. [ Start slide: ] Chapter 2. Effects of Sensory Impairment There are some specific things about deafblindness that I think specifically cause individuals to perhaps interact with us and the -- their surroundings in ways that we find challenging. And the first one is this, that situations may be confusing or threatening due to incomplete or distorted information from other people and the environment. I think that's the first thing to think about if you're working with a deafblind student. [ End slide: ] If they're having problems with their behavior, is, how are they getting information, and are they getting good information? I think one of the things that oftentimes people who are sighted and hearing don't understand is how much information they get in a split second without even trying. And how that happens consistently for them. And so let's just take something very simple like walking into a room. Most of you have walked into a room many times during the course of this day, and you walked into the room you're in right now. And one of the things that happens when you're sighted and hearing and you walk into a room is you automatically know thousands of things. You know that within the first few seconds and you know that without trying. You know what the room is like, you know how big it is, and you know how it's arranged. You have a good idea of where you should go in the room, just by glancing around. You know whether or not there are any people in the room. You know what they're doing, and whether or not what they're doing seems to be in line with what your expectations are and what your motivations are. You know whether or not you know any of those people. And in that, you know whether or not there's some people there who you've been interested in seeing and that you want to connect with, and you know whether or not there might be somebody there who you're trying to avoid and you want to go to the other side of the room from that person. You know how the people are dressed, and you know whether or not you fit in, based on that. You know that without even trying. Then you know what those people are doing. You know whether or not anything that they're doing applies to you or has any implications to you or is going to affect you in any way. You have some sense of what people's expectations are, just by the fact of observing what it is that they're doing and seeing how they acknowledge you and greet you. You get a sense of all of these things. Well, I'll throw in some more. You know whether or not people are eating or drinking. You know whether or not there are refreshments in the room. You know whether or not it's okay to have that, and if you're thirsty, you know whether or not there's a place to get something to drink there, and whether or not it's okay to have anything to drink there, and you can probably tell that fairly easily just by glancing around what's going on with the other people. And you kind of got a sense of the social milieu of the room and whether or not it's casual and whether or not it's formal, whether or not people are interacting or not. You know that in the first five seconds. And you know it without even trying. And I think we have become accustomed to that, and we don't really think about how that guides us into knowing what to do and how to do it. Now, if we take that same room and we come in, and you're deafblind and you walk into the room, which of those things do you know? Well, if you're unable to gather any information visually or auditorially, or if the information that you gather is incomplete or fragmented in some way or distorted in some way so you're not quite sure what it is that you're observing, what do you know about those same situations that I just described? Well, you don't know any of that. And, as a result, all of the things about how were other people and what are the expectations in here and whether or not I fit in and whether or not there's somebody here who I know and I trust, and whether or not there's somebody here that I want to see, and where it is should I go while I'm in here ‑‑ you don't know any of that, unless someone is specifically making an effort to fill you in on those things, or that you feel comfortable in that situation exploring. And I think there are a certain amount of social rules against that that people find, you know, that should I go around the table and tactically explore all the other people in this room and how are they going to react to that? Or am I going to get a behavior plan for doing that? I think that's one of the things that we have to say, is that in every situation, that's the difference between sighted and hearing and being deafblind, is that there's this whole wealth of information that guides us on how it is that we're supposed to act and helps us feel secure and helps us feel like we know what is -- is -- is happening or whether or not we're confused. And I think most of us have been in completely confusing situations enough times to know that that changes your outlook on life. If you're in a situation like walk -- you're going through the airport terminal and people are running every which way and they're all going against the grain from where you're going, you immediately go, what the heck is going on here? And what am I supposed to do about it? Do I need to follow these people? Did they change the gate or something? And we know that that unnerves us somewhat, to be in a confusing situation like that. And I think that's true for everybody, and I just think that for individuals with deafblindness, they find themselves in that kind of situation much more often when they're not quite sure exactly what's happening, and as a result, don't know quite how to act about it. [ Start slide: ] A second thing that I think is true about deafblindness that we have to acknowledge is this, that people who are deafblind have different perceptions about what is interesting, important, motivating, or punishing in some way. I think this is something that people who are -- are sighted and hearing often overlook. [ End slide: ] And in thinking about what's going on with a person whose deafblind, don't really have a good understanding of, is this whole idea of what must they think about this situation? I want to talk about this for a moment. This is a party hat. This is something kids sometimes wear, and sometimes adults if they're -- lively and child‑like, or -- or young at heart, is a hat like this. They put it on at parties. Why do people do that? You know, what is the motivation for that? Do you ever wear one of these when you're not at a party? Is wearing one of these hats itself a rewarding experience for most people? I don't think so. I don't know of anybody who just willingly wears one of these party hats around because they find it pleasing. As a matter of fact, I think most people find it pain in the neck. For me, it's not in the neck, but at least a pain under the chin with this elastic band which is entirely uncomfortable. Why do people wear them? What's the payoff? Why are -- are they in most stores we go to, every supermarket, every pharmacy, every party store, and people buy these things up? Why? I think if we consider what is rewarding about it, the issue is this. In a party environment, they're festive. They the make for an interesting visual environment; plus, they give us a sort of social sense of bonding. The fact that you can look around and everybody's got one of these hats on. And that somehow binds us together and makes us feel like the party is going to be -- be fun. And all of these things are based on our ability for sensory access of knowing that the - the hats are going on. Just wearing the hat is not fun. And ‑‑ [ Inaudible ] Yeah. I heard someone talk and I don't know if they're talking to me. Okay. I'm just going to go on here. And the -- the reason I bring up this party hat is because we were doing a training several years back about deafblindness, and we were doing some sensory simulation activities where people were wearing sleep shades and ear plugs and participating in an activity. And we decided that the activity would be a -- a party, and we decided that the people would be decorating cupcakes and this kind of thing. And in order to signify that it was a party, we put some of these hats around so people could put them on the person they were working with to help cue the person that it was a party‑like environment. We had some of the people simulating being deafblind and other people who were their teachers in the activity. And so the teachers put the hats on many of the people that were simulating being deafblind students, and afterwards when we asked people to discuss the experience, describe the experience, one of the things that struck me as very interesting is, one of the people was extremely adamant that wearing the hat was the most punishing and awful experience that they could imagine; that it was entirely uncomfortable, they didn't know why they had it on; they didn't know whether or not anybody else had one, or if they were the only one. And as they thought about that they were the only one, they didn't know the motivation for someone asking them to put it on. Was it like a dunce cap, or to mock them? It made them extremely uncomfortable. They said wearing that hat was the most awful experience that I could imagine. I think for sighted and hearing people, they don't have that response at all. They look around, everybody's wearing a hat. I'm wearing a hat too. That makes us feel like a group. Look at that, they're all different colors. Isn't that pleasing? I think for the person who wasn't able to get that information, they just knew I had an uncomfortable hat on my head and I just wanted it to stop. And I think that's one of the things that we have to acknowledge, is that for a person who is not gathering information the same way we are, it could be that things that may seem innocuous to us may not seem innocuous to that person at all, or things we might think important might be very rewarding to them. It's because we have a different way of viewing the world, a different way of experiencing the world if we're experiencing tactually, as opposed through our vision and hearing. Same thing if I talk about parties, one of the activities that our school sometimes does during our Fiesta day is doing the tradition Cascarones, having the eggs filled with confetti and breaking them on each other's heads. And everybody thinks that's fun and everyone thinks that's lively. The idea of chasing somebody down and hitting them with the confetti and watching it all spill about, everyone thinks that's fun. And why? Well, I think it's the same reason as the party hats, the fact that other people are doing it, that you're joining in, that it creates something that's visually interesting, that it creates a sort of a social bonding. And that's all based on your ability to observe what's happening around them. I think for a deafblind student, if they're just sitting there and they've been observing any of that and someone just came and whacked them on the head and the confetti is coming down, it may not seem fun at all. It might be, why did you do that? What's going on here? And I think that's one of the things we have to acknowledge. And so sometimes, I think what I see when people are reporting about behavioral issues, they'll say something to the effect of, "I don't know what happened. The student just got upset out of the blue, for no reason, and they just went off. There's no reason for this to happen; they were just there at party". And if you really think about it, you might think, oh, that's why it happened, they were there to party, and party may not be fun for them because the things that other people are having fun with the party in aren't meaningful to them. So one of the things that you might do before a party, if you want your student who is deafblind to enjoy it is to maybe do some preteaching about what's going to happen there, so things aren't so surprising and confusing. So the fact that there's a crowd is something that -- that isn't problematic for them; so that if you're going to do the Cascarones, you've done some preteaching about what and it's about, and you have taken turns hitting on each other's head, and doing that in -- in a -- a controlled environment, so it's not a surprise to the student, and when it happens at the party, they know what it is and that it isn't a big shock. These are the kinds of things we have to think about when we're working with an individual with deafblindness, is just everything about a situation, how are they experiencing it and how is it different than I'm experiencing it? And might I need to make some adaptations or make some changes to the situation so that it would be more meaningful and rewarding for that individual. [ Start slide: ] A third effect of -- of sensory impairments that I think affects a person's behavior is this one; Frustration about communication attempts, about their needs and feelings, are often unrecognized or misunderstood by others. This is something that I think is true for most individuals who are deafblind as commun -- emerging communicators, is that the communication attempts they make may be subtle and may be hard to understand; and as a result, they aren't -- are sometimes not acknowledged by the other people in the environment or not acted upon in the way that the person intends. When people aren't great communicators [ End slide: ] doesn't mean they don't have something to say. And when they try to explain those things to people and they don't understand, I think that's frustrating for people. I think one of the things that's true for most of us, myself included in this, is that when something is very difficult to understand, we have a tendency to move past it and ignore it. I'll give you an -- an example of what I'm talking about. I was reading a paper, and it described a situation with a deafblind woman who -- who just used a single sign ex -- expression when sitting at a table and said, "Coffee." And the individual who wrote the paper said, based on experience, I assumed that that was a request. So I gave the person some coffee. And they pushed it away and said, "Coffee." And in an effort to try to make sense of that, the person just said, well, here's your coffee. This is your coffee. Pushed it back to them, said, here it is. Drink it. It's your coffee. The person pushed it away and just said, "Coffee." And the author of this paper then put forth the question of, what did she mean? What could she have meant when she said coffee in that situation? Could she have been maybe thinking of her mother and how her mother likes coffee and drinks coffee and wanted to talk about it? Could she have been thinking about drinking coffee and wondered if you liked coffee, and then asking the question? Do you know -- do you enjoy coffee? Could she have been thinking about the fact that she'd had coffee earlier that morning, but it was a different brand or a different roast than she was used to and this had bothered her ever sense and she was wondering, where is the good coffee, the coffee we had yesterday? She didn't know. And the individual was not enough -- a good enough communicator, didn't have enough language to explain what it is that that comment made -- meant. And in that situation, what we often do is to just say, okay, let's just pretend that this didn't exist, and move on and talk about something else. And I think that for individuals who are deafblind, this kind of situation happens often to them, especially when they're not great language users or when their language is just emerging, that they make a communication attempt, and their communication partners don't understand it. I was just recently working with a young -- with a student and their intervener on a -- in a playground. At one point the student picked up a swing, and still chained to the swing set, but she kind of handed it to her intervener. And we had that on videotape, and we were watching the videotape together, and we had the real conversation about, what could she have meant about that? And in looking at the videotape, I think we all concluded that that was a purposeful communication attempt, that that was not a random movement, that she purposely picked it up and very purposely handed it over, like there was some meaning that was conveyed in that. But one of the things that was true was that none of us could figure out what it was. And we started discussing what it is we thought it could mean. Might it mean I don't like this kind of swing? Is there a different kind of swing here? We thought that the swing seemed a little higher than some swings, so maybe she was talking about this swing doesn't seem right to me because it's too high. She might have been requesting help to get into it because it was high. We thought about all the different possibilities. She might have been discussing the fact that at a different playground, the swings are different. We didn't know. But we started thinking about an appropriate response to that. I think what the intervener did in that situation, because he couldn't understand the communication, is change the subject and move on. But we started talking about, how could we answer that? Could we pick what we think it might mean and start talking about that? If we start thinking about is she ‑‑ if she's saying it's too high, maybe to measure it up, measure how tall that swing is with other swings; to talk about the swings in the different playground and how they're different; to discuss the qualities of it. Oh, look, this swing is -- is bendy and some of them are -- are stiff. There's many things we could talk about to acknowledge, at least, that we -- I noticed you're talking to me about the swing, without just saying, let's just move on and talk about lunchtime because that's the next thing on our agenda. And I think that's one of the things that we have to keep in mind for individuals who are deafblind, is, when they make a communication initiative, we need to pay attention to that and we need to acknowledge it and try to understand it because throughout their lives, especially when they are first learning communication, they make a lot of communication attempts that don't get met. And if there's something important that they want to say, like I don't feel good, or something is bothering me, or there's something that I need, and it never gets resolved, that's very frustrating for a person. And that might affect their behavior. [ Start slide: ] The next effect of sensory impairments that I think has an implication for behavior is this one. The students -- may have difficulty recognizing, trusting, and bonding with other people. I think this is a -- a common occurrence for many people who are deafblind. And if we think about the experience of being deafblind, it's easy to understand why. I think for a lot of people who are deafblind, they might not know who it is that is interacting with them. It may take them time to figure that out when they interact with people. [ End slide: ] David: And, you know, as they make their way through -- through the world, people sort of quickly flash into their lives and tell them something real quick and move on, and they might not even know who that is. And so people can become confusing and a little bit -- perhaps sort of threatening, if they're like, who was that guy? Who was that guy, and what is it that he wanted? And in that respect, I think sometimes people who are deafblind have difficulty trusting other people, or difficulty feeling a sense of close bonding or kinship with others because people are sort of confusing to them. I think this is true sort of across the board, when people are -- are -- are deafblind. A friend of mine who's deafblind, who is one of the most -- capable and social people that I know, who really enjoys socializing, she still feels this way. I know when I attend meetings with her and I'm going to arrange for interpreters to be there, she always sends me an e‑mail and says, these are the interpreters that I would like you to try to get, and gives me three or four names of people that she's familiar with. And she does that because, I just feel more comfortable doing tactile communication with somebody I know, because the act of communicating is much more, you know, close and involves physical contact in ways that it might not for other people. And so I kind of want somebody who I'm familiar with in order to do that. And I also ‑‑ because there's sometimes communication difficulties, it's good for me, if there's somebody I know, I've communicated with them before, and I feel like I understand them, and when I communicate, I feel like they understand me. I would like one of those people to be my communication -- connection to this meeting. And I totally well understand that I would feel the same way if I were relying on that sort of communication. And I think the same is true for all of our students. People are not interchangeable. There are certain people who they feel connected with and bonded with. And -- and other people may create issues for them because they don't feel like they know who this person is, they don't know what that person may want, or they feel like that person doesn't understand them. And I think that's a fact for many people who are deafblind. That's something we have to keep in mind when we're working with them, because the result of --of being that kind of person who whisks into a person's life without them fully understanding who you are, and having a history with you, may result in confusion and anxiety and all those kinds of things that lead toward behavioral problems for people. [ Start slide: ] Another one that I put on here as being an effect of sensory impairment that I think affects behavior is the need to stimulate or regulate sensory input. One of the things that's true for many individuals with deafblindness, students with deafblindness that I know, is that we see sensory stimulation kinds of things. [ End slide: ] Just because the fact that they're not able to get their senses stimulated just by looking out the window like some of us do, or, you know, just people‑watching in the room. And so we see certain activities like rocking or eye pushing that are, you know, just sensory stimulation for the person, to try to get some sort of sensory input coming in, but other people determine that they're behavioral issues and start doing something to try to stop them. And not that we shouldn't try to stop them, if, for instance, a person is doing eye pushing and think that that could be damaging to them, or not a healthy activity to do, it certainly would make sense to say, let's try to redirect that. But one of the things that I think we have to keep in mind is the reason the person is doing it ‑‑ that they're doing it for a reason. It's not idle behavior. They're doing it for sensory stimulation and one of the things we might want to do, as opposed to just telling the person don't do that anymore, which is a very difficult task. It's kind of like if there's something you do for sensory stimulation, like bite your nails or pick at your cuticles or tap your fingers on the tabletop or tap your foot on the floor, any of those things, you know that it's kind of a difficult task if someone says, just don't do that. You find yourself doing it again because it's meeting a need for you. And so one of the things that I think we might want to do, if we are considering how we're going to resolve a situation like eye poking, is not just to say, hey, don't eye‑poke anymore, but to say, "Here are some other things you can do with your hands," or maybe give the person some activities that they can do that are sensory stimulating. Or if they're going to have wait time, rather than just waiting with nothing in their hands, how about wait with something -- some sort of preferred activity or -- or object that they would enjoy having in their hands, that they would be getting sensory stimulation from, so they wouldn't have to poke their eye. Another thing that I think we see in terms of regulating sensory impairment is sometimes we see individuals who are deafblind kind of get into a shut‑down mode if the sensory information all around them is just too confusing, or -- or too overwhelming. They have a hard time sometimes prioritizing information or picking out what information can I ignore and what information are the salient points that I need to pay attention to. And as a result, sometimes it can be overwhelming, the whole sensory experience can be overwhelming for the person, and they have a tendency to shut down. And so we may see them putting their head down or something like that, that we might interpret as being stubborn or, you know, somehow socially inappropriate, when in fact, it's perfectly understandable, and what we need to do is regulate the sensory environment around them, as opposed to just train them to not do that they're doing it for a reason. [ Start slide: ] Then the final bullet point that I have on the effects of -- of sensory impairments that behavioral challenges may be in response to unreported pain or problems associated with medical conditions. I -- I think that one of the things that's true for individuals with deafblindness that we have in Texas, when we look at our entire census. [ End slide: ] A -- significant portion of the individuals who are deafblind in Texas are deafblind as a result of a -- a condition, be it something like the effects from premature birth or some sort of genetic syndrome, that have a -- a wide array of other features. And some of these things may cause physical problems for the person, and that's something that they're having to deal with and cope with. And the differences for a person who's deafblind when they're dealing with those kinds of situations, is they may not have the language to explain what those problems are to other people, so they may be experiencing pain or discomfort in some way and not have a real good way to tell people about it. And as a result, you know, one of the things that I've seen happen time and again for individuals who are deafblind is, if they start, for instance, when they have a headache, banging their head, they all of a sudden get a lot of attention, and people, because they're banging their head, they start comforting the person or they may give them some Tylenol or something like that. And that's what I needed. But I didn't know how to the you that. But the one thing that I find happened for me, from a perspective of the child is, the one thing that seems to get results is if I bang my head. And so they sort of learn that that's an effective way to get that situation resolved. And so I think that's one of the things we have to think about is if the student is engaging in some behaviors, could it be some sort of physical problem that they're having that they're unable to report to us, and can we figure out a way to help them both get that situation resolved so it's not such a problem for them, but also how to communicate that better, so that we know when it is they're not feeling well. I saw a real interesting presentation at the CHARGE Syndrome Foundation conference a few years back in which a researcher was talking about her study into pain and CHARGE syndrome. One of the things she said that I thought was very interesting was that for most of us, our responses to pain come through some very specific things that we do to let other people know that something hurts, you know, and there are certain things that we would all recognize as being, ow, ooh ‑‑ whatever the kind of looks that we give one another to say, oh, like this is problematic for me. I'm experiencing a problem here. I'm having trouble, I'm in pain, or if we just, you know, use the terminology saying, "Ow," those things -- one of the things that she talked about is the fact that those reactions are, to a large extent, learned by us through modeling of other people, like we observe how other people react when they're in pain, and we have a tendency to react in the same ways because it's sort of a social code that we have learned of how do we indicate this. And for individuals who are deafblind, they aren't able to learn through modeling very -- very well. Or when they do learn through modeling, it's with incomplete information or distorted information or fragmented information. So as a consequence, they may not have learned the same social signals that the rest of us have that indicate, oh, you know what? I'm having a headache here. They may not have learned that particular gesture that most of us do. And, you know, to a certain extent, that may be a natural way to react to head pain, but to a certain extent, it's a -- a learned behavior. It's something that we see -- see many people do because they learn it from each other. And if you can't observe people doing that, you haven't learned those signals. And that's also one of the reasons I think that we have a hard time sometimes knowing when individuals who are deafblind are having these kind of physical problems. Chapter 3. Addressing Behavioral Concerns So I think all those things together, I think a person has to take into account, whenever they start thinking about, what are we going to do in planning and programming for a student who may be engaging in challenging behavior, and I think a lot of times we call in a behavior expert who has no experience with individuals with sensory impairments, and specifically with people with deafblindness, and they sort of treat the behaviors as -- as resulting from the same reasons that they find that -- that other people may be engaging in, that it's manipulation, or that it's, you know, just sort of a mischievous streak, or whatever it is that we say like, oh, that's what causes it, this is what you do about it. I think that it -- it really helps a team if somebody who's familiar with sensory impairments is engaged in the discussion of what to do for behavior problems so they can talk about these issues and how the things that we just talked about would affect a person's way of interacting with other people in the world. And I think that we always have to keep that in mind when we're working with individuals with deafblindness. That's why we put out a document that's on the TSBVI.edu website, in our deafblind outreach section. It's being organized. I'd give you a URL for that, but, we're reorganizing, we've just gone through a major reorganization of our website so I can't say exactly where this lives on our website right now, but it's a document called the IEP quality indicators for students with deafblindness. And we have a page in there on deafblindness that we say, well, here's four things that if we were judging whether or not the IEP was good for a student with deafblindness that we'd say would indicate that the IEP team is doing a good job of looking at behavior, on the behavior issues. [ Start slide: ] And those four points were the ones that we just talked about. The first one being that the assessment done for behavior includes a functional analysis of the communicative intent or sensory needs met by the behaviors, and that those things are specifically tied to deafblindness. There are some things having to do with communication and things having to do with how you are regulating the information that's coming to you that affect your behavior. And those things need to be addressed in any kind of assessment that somebody does of behavior. A second point that we put there is that the team has evaluated whether or not discomfort related to the medical conditions surrounding a student's etiology are impacting their behaviors. I think that's one of the reasons that what we want to see [ End slide: ] in any kind of reporting or -- or a discussion of issues of -- of behavior would indicate what the etiology of the child it. If they have CHARGE syndrome, that is going to affect a person in a wide variety of ways. It effects how they're able to perceive the world through their vision. It affects the information they get through their hearing. It affects in -- in many cases , not everybody with CHARGE syndrome has all of the features, but the features involved in it, cranial nerve issues, that affects a person's swallowing, and that affects not only how they feel about eating but also can affect, you know, just the idea of how they deal with their own bodily fluids, you know, their saliva and other problems. It also creates a facial palsy which can affect our ability to know whether or not they're having a problem with the situation, whether or not they're happy. I think a lot of times we just don't know because, for instance, they may not be able to smile or frown. And a person with -- with CHARGE syndrome may be having problems with reflux, and this could cause them to have a lot of pain and a lot of problems that need to be dealt with medically. We need to know all those kinds of things. And so one of the things that we'd be looking for in the behavior evaluation to manage the deafblindness is, do we talk about what the etiology of what their deafblindness is, and what might be some other medical implications of those things. [ Start slide: ] The next one we have in there, we have four things to look for, is that the IEP for any student with deafblindness who has behavior prob -- issues would be that there should be something in there about improving their ability to communicate, and helping them to communicate their ideas in more socially acceptable ways. Communication goals should exist for any student with deafblindness. [ End slide: ] If -- if they're having behavior problems because, you know, it's an old slogan that we -- we say it -- I didn't type it out in the PowerPoint this time, but the old slogan is that behavior is communication, and that it carries meaning. And so one of the things that we assume when an individual with deafblindness is engaging in behaviors that challenge us is that they're trying to tell us something. And so one of the things that we need to think about is, what are they trying to tell us, and to try to teach them better ways to tell us those things, ways that are more socially acceptable. [ Start slide: ] And then the final thing that we put in there is that the IEP for any student with deafblindness who has behavioral issues should include some sort of strategies for providing them with more understandable information so that they know more about what's going on. And that can be calendar systems, it can be a picture or other tangible -- tangible symbol systems. It could be developing routines that they're familiar with. [ End slide: ] So they have a better -- expectation of what to expect, so the world isn't so confusing to them. It could be just more explanation about what's going on, more time to explore, so, for instance, when you enter the room, -- prepare to arrive there early and let the person explore and find out what all is going on in there, rather than just guiding them into a room and asking them to sit in a chair and having them be confused and sort of guess at what's going on around them. All of those things really help an individual who is deafblind be able to interact with the world better. Chapter 4. Prevention vs. Reaction So Now I -- I want to move on to another one of my themes for the day here, and that is the difference between reaction and prevention in terms of behavioral issues. I put in -- in your handout, which hopefully many of you have now, or most of you have now. [ Start slide: ] And in this PowerPoint slide, I posed a couple of questions here and asked which is a better way to deal with problems that may cause issues for us. And I put a question that I think reflects reaction to behavior. What should I do when and if a student engages in challenging behavior during an activity? And then a second one that I think reflects prevention is: What can I do before this activity to make it less likely that the student will engage in challenging behavior? And I think if you look at those two questions, it illustrates the difference between reaction and prevention. And think about answering which question would more likely lead toward success. I always come down on the side of prevention, that one of the things that we can do is always be thinking about. [ End slide: ] What potentially might cause problems in the activity we're going to do, can we put some things in place ahead of time that would make them less likely to happen. Can we do some preteaching, can we give some additional information, can we arrange the room in such a way that it's less likely that the behavior will occur? Can we have all the materials in place so that the person does not become confused when they're waiting for something that someone is having to run and gather up? Can we create a routine that the person understands and has an expectation of what the next steps are going to be, and has a sense of how long that activity is going to last because they've done similar activity before? All those things are ways to prevent behaviors from occurring. And I think that prevention most generally leads to better results than if we just fly into an activity, hope for the best, and then once trouble starts, figuring out how to handle it. Because once a behavior issue begins, there's no really good solutions for how do you handle it. At that point, you're just sort of flying by the seat of your pants and trying to make sure everybody is safe and make sure a situation doesn't get out of hand, and there's no great solution at that point. The solutions lie in how can we arrange things so it may be less likely that behaviors would occur. And I think there's a couple of ways to think about doing that. [ Start slide: ] One would be the short‑term ways of prevention, and that would be by controlling the antecedents of the behavior or triggers for the behavior. I mean, if there's certain things that we know often cause behavioral issues for the student, to just avoid those things. If, for instance, we know, you know what, they don't like crowds because they are too confusing and they get bumped into and they don't know why. So whenever there's a crowded situation, we can kind of expect that the individual may engage in self‑abusive behaviors. [ End slide: ] Then I think, you know, one of the things we can do is, straight off, as a short‑term solution to that issue, is to say, let's stay out of crowds. Let's try to skip activities that involve lots of crowds, or if we are passing through an area, let's go around the crowd, because we know that's going to be a problem. I was in a school a while back in which one of the teachers was talking to me about the one time per day that a student engaged in a tantrum‑like behavior, and it was when they were headed off to gym class because they walked past the cafeteria, and whenever they walked past the cafeteria, the student would get upset because -- the individual was deafblind, but they could smell the food was cooking and thought that that would indicate to them that it was time to eat, and they had a hard time understanding why, if there was the food right over there, I can smell it, I know it's there, why we're moving ahead when it seems like that would be a good place to stop and maybe get a little snack or something. It happened time and again, and what could they do about it. And I can remember talking to them about, well, is there a different way to get to the gym that doesn't go past the cafeteria? She said, oh, yeah we could go out that door and around through the courtyard and around that way. I said, well, okay, do that, you know. It's a simple solution, but it's one of the things like if you know that this creates a problem, if you can predict that this situation is difficult for the student, why put them in that situation? It doesn't make sense. And so though we would work long‑term to try to help resolve that situation so they can do it successfully, in the short‑term, why continue to create a problem time and time again? And so I think that is what we mean when we say that we're going to block the behavior or reduce the triggers. [ Start slide: ] And then the second thing that we would do is to develop a more long‑term solution to the problem, and that is to say that if there's something that's happening with the student that creates a problem, let's go back to the cafeteria example, and that the situation is that the person smells the food and thinks smelling the food indicates that it's time to eat and, therefore, I'm having a problem that we're not doing it, to say, well, how about if we put together a communication system that's going to give them more information about what their schedule is. [ End slide: ] And put together a calendar that we discuss in the morning and we talk about what the activities are going to be, and in what order they're going to be, so that the student has more of an understanding of where it is that they're going to go and what it is they're going to do. And one of the things you can do during the course of those conversations is perhaps talk to them about the fact that, you know, when they're going to the gym, what they're going to pass, and if they're going to pass the cafeteria, that they'll smell the food, and discuss that and prepare the person for that, and talk about the fact that even though they're not going to eat then, when they're going to eat, and maybe bring with them a portable calendar so they can check and see that they're on the way to gym, and then after that is lunch, which they might not know otherwise. So I think in that way, we would be teaching an additional skill that would help reduce the behavior for the person. You know, another example of that might be if a person engages in self‑abuse when they feel thirsty. There's a couple of things that we can do about that. One is, we can help teach the person how to tell us when they're thirsty and how to ask for something to drink, or we could also teach them how to go get a drink, like where is the cups, and where's the water fountain, and how do you find your way to it, and if you're thirsty, that you can go get yourself a drink. Those are two things that you could teach them that would resolve the problem of, right now when I'm thirsty, I'm just hitting myself in the head. And what happens when I hit myself in the head is, people come over to comfort me, and then they get me a drink. I think a better solution in the long‑term would be to give the person some additional skills that might enable them to resolve that situation in different ways. I haven't been doing this as we go along, but I do want to take time before continuing to ask whether or not anybody has any questions or comments that they would like to throw in right now. Chapter 5. Functions of Behavior If not, I'm going to move ahead and I want to talk about determining the function of behavior. One of the things we do, I think using our prescribed behavior strategies is functional analysis of behavior, and in that, you know, it's a fancy way of saying try to figure out why the person is engaging in the behavior, what are they getting out of it, what is motivating them to do this. And I think that we can learn something of functions of behavior by collecting data. So I would say that's always the first place to start, and if we really want to try to figure out why a person is engaging in behaviors to just figuring out some of the specifics about when they're engaging in those things, what does it mean for us. [ Start slide: ] So there are simple questions to ask, and the ones that you would expect, which are where, when, what, and who, but to talk about where the behavior is most likely to occur, when is it most likely to occur, what's around them when it's occurring, what's usually happening before, during and after the behavior, and who is with the student when the behavior occurs. And if we collect data on that, we can usually find some patterns that help us figure out what's going on with the student. [ End slide: ] I went through several different functional analysis formats and forms that I have used and found, and there are certain functions, they're all a little bit different, but there are certain functions that I think are fairly common to them. So I put them down here, and I want to talk about what these behavioral functions are, and then talk about how deafblindness may affect the student with these behavioral functions. [ Start slide: ] The first one I put there is lack of knowledge about what to do or what not to do. That's a fairly simple behavioral function, but one that I think sometimes we forget about which is, does the person know that what they're doing is not what they're supposed to be doing, or do they know what they're supposed to be doing. [ End slide: ] And I think that sometimes this is the issue for a student with deafblindness. And when we think about deafblindness, it kind of makes sense. How do we know how to behave in an elevator? Or how do we know how to behave at the dinner table? Most typically it's not because someone gave us a lesson in that. I would challenge anybody to say, did you ever get a lesson about how to behave in an elevator? At any point, did someone sit you down to talk to you about that issue let me explain to you about the elevators. You're old enough now. It's time you know, here's what you do in an elevator. You stand, you face the doors, you look straight ahead. One thing you might do is ask somebody whether or not you can push a button for them, but other than that, pretty much keep your conversation to a minimum. Try not to be too happy or sad. It's a little unnerving to people if you're giggling on the elevator, something that we don't often do. I don't know what you all find that the rules are about elevators. Those are some of the kinds of things that strike me. I know there are YouTube videos out there of people who do strange things in elevators just to see how people react because people don't like it when you don't follow the elevator rules. How do you know what they are? Well, really it's a fairly simple equation to find out how do you know what the elevator rules are. That is, you just go into a few elevators and you witness what everybody is doing and you say I'm going to do that same thing. What those people are doing, I'm going to do that, too. That's how we learn a lot about how we act in certain situations, is through modeling. Same thing at a dinner table. What are good table manners? There are some of us who went to finishing school or got some sort of table manners lessons or table manners instruction, but for most of us, we can't remember specific table manners instructions, except something that your grandmother told about you your elbows on the table or something like that. For the most part, the table manners that we know and use are ones that we've gathered or learned by just watching what other people did at the table and doing the same thing they're doing. And that's how we learn a lot about what to do in the world and how to interact and how we get by. And for people who are deafblind, they just don't have that same information. And so the whole idea about what's the appropriate way to behave in certain situations, they may not know. And in that case, we really need to think about, can we systematically teach those things to the person that they're not gathering incidentally. You know, a good example of that for some of the students that I know is students who maybe hug people as a way of greeting them and not understand the difference of who it is that feels like a hug is appropriate from, and who doesn't. Like it's a rule they don't understand. Who do you hug and who do you don't hug? Like, yes, hug your mother and, yes, hug your friend that you haven't seen for a while, but the cashier at the supermarket, no, you don't hug them. And if they don't understand that, they may engage in a behavior that somebody might find as problematic just because they don't know any better. They need social skills lessons in that case. [ Start slide: ] The second one I put there, says cultural or family norms, it's very similar to lack of knowledge, the student has learned this behavior through the situation of, in their family or the places that they go or the associations that they have, they have learned that a certain behavior is something that you are expected to do and haven't really learned a broader picture of how other people react to those things. [ End slide: ] I'll give you an example of that, for a student that I know who is constantly sitting on people's laps. People find that off‑putting. It's something we don't do with our coworkers, sit in their lap. If we did it, we'd consider it a behavioral problem and probably would get on a growth plan from our employer for constant lap‑sitting with our coworkers. But I know a student that sits on people's laps regularly, and when trying to figure out why, I found out that for this student and their family, it was kind of an expectation. So one of the things her mother told her all the time, "Come over here and sit on my lap. And -- even though you're now 17 years old, I still want you sitting on my lap." And I think if the person has learned that in another setting, sometimes they need some teaching about, well, when is that appropriate and when is it not appropriate? Because there's too many cues about what's going on in the world socially that they haven't picked up on. And so I think that's sometimes one. [ Start slide: ] David: The third one I put in there is doing the desired behavior is just too difficult. I think sometimes it's difficult for a person to know what to do or to do what it is that they know they should be doing. Another one I put in there, and it's the fourth one on the list, but I think it's the biggest one if we're talking about deafblind students, it's the one that I count on the most, which is confusion, stress, or anxiety. And I put in there, survival skills and self‑regulation. I want to talk about survival skills. I think this is something that's true for most deafblind students that I know. [ End slide: ] They often get in situations that they find confusing and stressful, that they're really not sure exactly what's going on, and as a result, they have anxiety about it. Anxiety is a fear. It's a fear that you can't necessarily put a finger on what you're afraid of, but you just think something's wrong. And when you think something's wrong, what you do is, you have a perception that there's a threat out there. And our response, our sort of natural instincts regarding threats is the situation that we refer to as fight or flight, that when we feel threatened by something, we have a tendency to either try to run away from it, and if that doesn't work, to fight back from it. And so I think that's one of the reasons that we see a certain number of students shutting down, getting into a fetal position, or lashing out and pushing somebody or another behavior is just this sort of issue of I'm confused, I'm stressed out, I don't know what's going on, I'm feeling very anxious, and what my body is telling me is, fight or flight. And so I think that this is something that we see very often with individuals who are deafblind. It's something we really have to think about if we're seeing students engaging in self‑abusive behavior or aggressive behavior, is whether or not it might just be as a result of this stress. And I think that more and more we're getting research which shows that people who are deafblind are under a lot of stress a lot of the time because of the -- the difficulties that they're having. [ Start slide: ] The next one I put in there is to gain social attention. I think sometimes people dismiss this by saying, oh, that's just attention‑getting behavior. I think -- I often wonder why people dismiss things for that because getting people's attention is not something that is foreign to us, it's something we all do. [ End slide: ] It's just that most of us are better at it sometimes than the students, who don't really quite know how to do that, and they may engage in behaviors to get people's attention because they don't know a better way to do that, and lesson about that would benefit them. [ Start slide: ] I'm going to go through the others very quickly. To get an object or an activity, like for instance I'm thirsty and I don't know how to get a drink, or I would like an aspirin, I don't know how to get an aspirin, so I'm going to engage in this behavior because it sort of worked for me in the past. The -- the next one is to reject or escape an activity. If you do find that something is punishing, I always like to delve deeper into that and say why are they trying to escape? Is it because of their stress? Is it because they're rushed? Is it because they need processing time? But are they trying to get out of something because it's not working for them? The next one is physical or medical problem. We talked some about that already, about that they may be in pain or having a physical problem. Personality conflict. I think this is something that a lot of times people are uncomfortable talking about it because it seems like there's a value judgment based on it, that if the student is having a personality conflict with them, it's either a problem for the student, a problem of the student, or there's something wrong with the -- the staff person or other student that's causing the personality conflict. I don't view it as a value thing. I think it's true ‑‑ I think it's human nature. I think it's true for all of us that there are certain people we feel happy to be with and that we feel connected to, and we feel like we click with, and those people we tend to, you know, go sit with them at the lunch table and if we see them, go over and say hello. There are other people who we just don't click with. [ End slide: ] and we kind of want to avoid, and if we see them coming, we think, oh, gosh, here comes Charlie, you know, I need to duck out the other way, and we're able to do that fairly effectively and we avoid those people. I think for a lot of students with deafblindness, they have the same thing. There are certain people that they feel really connected with, that they click with and others that they don't, but they just don't know how to get away from the people that they don't connect with in the same way that we do. You know, the whole idea of I'm going to duck around the corner or I'm going to go sit on the other side of the room or something like that isn't really an option for them, or they can't figure out how to do that. So sometimes we might see problems because of that. And then the final one I put in there was pleasurable sensation. And we talked some about that, with the whole idea of sensory stimulation, that it might just be they're engaged in the behavior because it's a good sensation for them. Chapter 6. Deafblindness & Behavior Functions All of those ideas ‑‑ I -- I put it in your handout the different effects of deafblindness that I covered earlier. [ Start slide: ] Incomplete and distorted information, differing perceptions, inability to communicate effectively, difficulty in recognizing and trusting, bonding with other people. [ End slide: ] [ Start slide: ] Stimulating, regulating sensory input, and unreported pain or problems. I think when we overlap those things with the different behavior functions that we just went in ‑‑ [ End slide: ] [ Start slide: ] What I did in your handout was I listed out the effect of deafblindness and those behavior functions, and I put check marks by the ones that seemed like the effect of deafblindness directly relates to those functions. Incomplete and distorted information I think leads to lack of knowledge about what to do. It puts greater reliance on -- on the norms that you've learned, as opposed to what's going on around you. It can make desired behavior too difficult. It definitely leads to confusion or stress. It causes problems gaining attention in socially appropriate ways, and -- and may make it difficult to get things that the person needs. All of those things are directly related to that specific effect of deafblindness. And so when we see someone who's deafblind, to think about these could be the problems, and our solutions or our -- our strategies to help the person should be to resolve those issues for the person so they don't continue to be a problem. [ End slide: ] [ Start slide: ] And I put check marks like that for all the other effects of deafblindness as we go along. [ End slide: ] [ Start slide: ] I guess at this point I'll just pass through the check marks. No need to read through them. They're in your handout. If didn't you get your handout, we'll make sure you do that. [ End slide: ] [ Start slide: ] I'll end with that slogan I talked about earlier. [ End slide: ] [ Start slide: ] And that is by focusing on -- on behavior and not on the message, sometimes we miss the message in the behavior. [ End slide: ] [ Start slide: ] And we have to think about the fact that behavior is communication, and that there are some messages the individual may have that are perfectly legitimate and things that we should understand, but they don't know how to tell us these things. [ End slide: ] [ Start slide: ] Things such as, I'm bored, or I don't feel good or I'm confused, or I'm not ready, or I'm scared, or I'm embarrassed, or this is too hard, or I'm lonely, or I need help, or I want to have some input into this decision. All of those things are legitimate things to say, but if you're not a strong communicator, they might be difficult to say. [ End slide: ] And as a result, the individual may engage in behavior to do those things and to give those messages. But if we can sense those messages in the behavior, to help them with those issues, as opposed to just saying, "Stop with the behavior." [ Start slide: ] Chapter 7. Resources I put some resources in your handout. Feel free to look through those. There's good information on behavior. And I -- I put the NCDB library, the National Center on Deafblindness. If you go to that website, nationaldb.org, and go to the library link, they have a section called Selected Topics. And one of them is behavior. And it has lots of articles, video, and information that's available on the web about deafblindness and behavior. It would be a good place to look. I'll say that the Perkins site has good resources on behavior and visual impairments. You can go to the Perkins Scout website. And I put the long URL in there, or you can follow a link to it, but to go to Perkins Scout and find the behavior issues link. [ End slide: ] [ Start slide: ] The -- other two I put in there just in terms of what's coming out of -- of OSEP in Washington and out of our Texas ‑‑ coming out of TEA, we have the OSEP Technical Assistance Center on Positive Behavior Intervention and Supports. It's good on behavior, then the Texas Behavior Support Initiative which talks about positive ways to deal with behavior. The last one I put in there is from David Pitonyak, a site called Imagine. I put the website for it there, www.dimagine.com. He's got some articles I view as somewhat my guiding light on behavior, just theorizing why people engage in certain behaviors and ways that we can help those people in a positive way, and so I would recommend that one as well. [ End slide: ] [ Start slide: ] [ End slide: ]