Introduction to Deaf-Blindness Part 3: Unique Learning Needs of Individuals Who Have Deaf-Blindness SLIDE 2 A learner who has deaf-blindness needs to understand concepts through more than one sensory mode, or through more than one communicative mode. For speech and language pathology folks, people who are students of communication, you'll call this multi-modal communication. And I would say, yes, that's exactly what I'm talking about-- more than one mode. You understand that. If kids have some degree of impairment in their main two distant senses for gathering information about the world, they need to get concept learning through more than one channel. Kids need to have the opportunity to learn and interact in an enhanced context in order to know what's going on around her. Maybe some of you are intervenors, and you say, aha! That's why I'm here. That's what I do. That's my job-- is to enhance the context, enhance the learning environments for the learner with whom I work. That's exactly what you're doing. SLIDE 3 Deaf-blindness requires a learners' partners to take time to always plan how a learner will receive information. Every activity, everything all day long, how is that learner going to get the information? Remember, information gathering is impaired. Learners' partners need to plan what a learner will do in every activity. How will the kid participate after they receive some information? What are they expected to do with it, do about it, do because of it? What will the learner do? So you take time to consider the immediate environmental context, the physical environmental context, which is much more likely to be connected with an impact sense. It's right there. It's physically right around you. You're sitting at the table. You're handling the materials, teddy bear counters, the stuff to make the cake with, the recipe. But you also consider the visual context, the auditory context of every activity. And you have to judge and perhaps accommodate or adjust to the visual and auditory needs of that individual learner. SLIDE 4 If you meet a person who has deaf-blindness or when you approach a person with deaf-blindness to interact with her on a regular basis-- if you're a member of the team, you're going to do this often, I hope-- if you're a member of a family, this is your life-- you need to try to treat her as you would anyone else. That doesn't mean you don't make accommodations for her. Of course you do. But we make accommodations for anybody. We need to help them understand what we're saying, what we're doing, what we're showing them, what we're giving them. You need to address her directly, not through an interpreter, not through an intervener or anybody else. You don't ask the intervener, how is Susie feeling today? You ask Susie how she's feeling today. And if the intervener needs to help the learner receive that message, so be it. But you speak to the learner, address the learner, interact with the learner directly. I think those of us who are parents-- we could identify with this, perhaps, if one were out in public with a young-- one of our children before they're too old, maybe five or six or-- and I say, well, how does Christopher like school? Well, he's right here. Why don't you ask him, or say, what's Christopher's favorite subject in school? Well, he's right here. And he can understand you and talk. Why don't you ask him, because we need to help people understand. It's an attitudinal thing. It's an expectation thing that these children, these teenagers, who have deaf-blindness are able to learn and interact with other people. It's critically important you let the learner know who you are and when you enter the room and are available to interact with her and when you leave the room so that that learner knows you're not available anymore. We're going to be doing some things in the future about object cues. And we'll give you some strategies for this. But you can have this as a teaser for now. How are you going to let the learner know, I'm here if you need me? I'm going to leave now. So if you need me, I'm not available. You want to use the words see, hear, and [INAUDIBLE]. You want to describe things that are happening or about to happen. Again, if someone watching this is an intervener, you go, that's my job. That's what I do. And I would applaud you and say, that is exactly what you do. That's exactly why you've been hired to support that learner. And remember that the behaviors we show, the behaviors in which we engage as we interact with a learner with deaf-blindness-- they affect attitudes of other people who are around us, of other peers in their classes. They affect expectations. We're models, whether we know we are or not. SLIDE 5 When we're communicating with the learner that has deaf-blindness, we want to be in close proximity to her, but yet, of course, we need to be respectful. We just need to respect personal space, life space. We need to alert the learner that a communicative interaction is about to start or it's ending now. There there's that phrase. We need to use multimodal communication, provide information, provide input in more than one way, in more than one mode, through more than one sensory channel. And wait-- wait and wait and wait. And did I say wait? We need to wait for kids with deaf-blindness to respond. Typically, kids with deaf-blindness-- teenagers, children, their wait time, the time they need to process is more lengthy than that of other children. And we need to not rush them, and we need to respect that wait time. Some people say deaf-blind time is at least twice as long as, quote, regular time. I don't know. I just know it's longer. We need to provide that learner choices so that she can have some control over her environment. Every learner with a deaf-blind label is an individual. The population of kids with blindness is very heterogeneous. Just because I'm saying these are general characteristics of kids in this population, it doesn't mean that each and every one of these will apply to each and every one of the children whom you serve or your own child, if you're a family member. So please bear that in mind. Maybe we'll use this as a list of things you might want to think about, you might want to check out and do some informal assessment or probes. You might want to not be surprised if you see these in the child, because they're not unusual. But don't just expect all these to happen. SLIDE 6 Learners with deaf-blindness often demonstrate-- I think I've said that enough times, I'm worried about it. They often demonstrate inconsistent responses to sounds, inconsistent responses to visual images. What this is saying, their residual skills, or their remaining skills, in vision or hearing, they may not use these consistently. It may be because of the type of loss the child has. If a child has central auditory processing disorder or cortical vision impairment, those are vision and hearing disabilities that happen with the way the brain processes information, and they're characterized by inconsistency of response. So you can't expect this perfection. You might say, but he did it yesterday. He did it last week. Well, yeah, maybe he did. But maybe, for some reason today, he can't. So we try it again. Learners with deaf-blindness often demonstrate a distorted perception of the world-- hopefully that makes sense by now-- due to a lack of non-distorted information from those distance senses. People say 90% of what we learn-- those of us without vision loss, 90% of what we learn, we learn visually. Wow. If kids have distorted visual input, why wouldn't they have a distorted perception of the world? Kids often have balance problems. Our balance sensory system, the vestibular system, is seated in the eyes and the ears. Well, if there are other things not functioning in typical ways in the kid's eyes and ears, they may, indeed, have balance problems. They may show delayed motor development, tactile sensitivity, tactile defensiveness, or a very overactive startle response. Again, when you don't know what's coming at you because you can't hear it, you can't see it, why wouldn't kids startle in it to an extreme degree? SLIDE 7 The general characteristics continue. Kids, teenagers will have difficulty interacting with things in the environment in a meaningful way. They oftentimes have difficulty communicating with people in a meaningful way, which leads to difficulty in establishing and maintaining interpersonal relationships. I really think those first three kind of say the same thing in different words or in different ways, just trying to drive home the point that it's tough when you can't see and hear in typical ways. You have difficulty generalizing information. Many, many children and teenagers will do light-gazing. They will often engage in stereotypy. If you don't know what that means, it's self-stimulatory behavior where they do repetitive motor movements that might seem out of place or seem strange or just not typical. And I think kids will do this because of sensory deprivation. If you're not getting much input from your eyes and your ears, you need stimulation, so you create it by engaging in this self-stimulatory or stereotypy behavior. Kids may do it out of confusion, anxiety, apprehension, fear. It's not an atypical response. I think we can all think of things that make us nervous where we might go ahh! And we shake, and we tend to raise up our hands and say ahh! I've got too much. I don't know what to do with this anxiety. Kids will do that, sometimes with a fair amount of frequency. SLIDE 8 It is important-- it's very important-- to remember that learners who have deaf-blindness often lack the ability to anticipate events. They are very often deprived of many of the most basic motivations outside themselves. How can you be curious about the world, curious to explore the world, when you don't know what it looks like, what it sounds like, what it feels like, or that it's even out there? Remember [INAUDIBLE], he says we have to invite these children out of their own bodies. You have to invite them out to join us in the world. And this is just a connection because of motivation and curiosity. And this is one that I'd say is the most generalizable of all these characteristics relevant to learning that I've shared with you so far. Kids with deaf-blindness, particularly with significant vision and hearing losses, they are just not going to benefit from being left alone for long periods of time. Even if you put toys in front of them, learning materials in front of them, leaving them alone for extended periods is not going to work, because they don't know what to do with those things. They don't know what the expectations are. They at least need somebody to check in with them frequently. They need an intervenor there to support them. They need a teacher's assistant or a teacher interacting with them to provide cues on an intermittent basis. So being left alone isn't going to be a sufficient learning experience. SLIDE 9 This is the last page of the characteristics relevant to learning. Should bring us full circle back to what we said about information gathering or learning. Many kids with deaf-blindness cannot benefit from incidental or secondary learning. They must be taught through direct instruction-- direct learning-- because of their limited senses for information gathering. Typically, kids cannot independently learn from mistakes. [INAUDIBLE] typically developing children, families, teachers expect kids to learn from their mistakes. Children and teenagers, young adults with deaf-blindness can learn from their mistakes, but not independently, because they are unable to correctly understand the results of their actions by themselves. They need somebody to tell them what the result of the action was, help them understand the result of the action, help them understand there, indeed, was a mistake made and how they can correct that. Kids with deaf-blindness, teenagers, young adults may not benefit from group instruction alone, because they can't learn from watching and listening to other kids. The best way that teens and families can informally gauge a learner's cognitive skills is by observing the way she remembers things. SLIDE 10 So let's wind this up. Learners with deaf-blindness almost always-- again, you've got me nervous; I can't say always-- but almost always experience feelings of vulnerability. They will feel more secure or safer in a seated position, particularly if the vision loss is significant. Almost always, it will take a learner with deaf-blindness a longer period of time to learn to trust the world, to learn to trust other people in the world. Again, when you can't see and hear what's coming at you, what's being thrust upon you, what's touching you, where you're being taken, trust is a very tough achievement. Can they do it? Absolutely. They need a lot of support. They need a lot of wait time to be able to learn to trust other people, to learn to trust the world, to learn to trust that it's safe to come out of your own self. Learners with deaf-blindness are typically challenged with counteracting boredom. SLIDE 11 They perceive time very differently. We've talked about that. Almost all learners with deaf-blindness will respond positively to enhanced textures. Most kids and young adults will find it difficult to interpret movement. They'll fatigue more rapidly than their same-age peers, particularly if they have some vision left over, some hearing left over. But they have to work so blasted hard to hear and process what they hear or to look and focus and process what they see. They just don't have the stamina and the endurance. So it's very important to remember that variable when you're planning a learner's schedule for the day. Typically, learners with deaf-blindness will demonstrate increased tactile sensitivity, particularly around their faces. SLIDE 12 So in summary, a child with deaf-blindness, a teenager with deaf-blindness is not a deaf child who can't see. The child with deaf-blindness is not a blind child who can't hear. Remember that deaf-blindness is a unique and very, very complex disability. SLIDE 13 Learners who have deaf-blindness are an incredibly heterogeneous group. You need to get to know each child, each pre-teen, each young adult as an individual-- what his vision skills and abilities and needs are like, what his hearing skills and needs and abilities are like.