Disclaimer: Raw, unedited transcript.
 
[ Please Stand-by for Real Time Captions ] if the caption or could indicate that you can hear us -- 
>> Thank you captioner , thank you Christine. 
>> Thank you. I just wanted to make sure. we do need the phone to keep the Mac ground noise quiet. It concerns me. You should hear something different than music. I would suggest you hang up. 
>> I can't hear you. I will type it. 
>> Thank you. How did she know that Megan spoke? 
>> Maybe because other people told her. 
>> Thank you for typing that in I have a migraine tonight. You guys can cover for me Donna can hear you. That is good. 
>> Thank you to all of these brave souls that are coming in and listening to us. We are going to give it a few more minutes and let people come into the room. We will get the technology working and then we will get started. Susan has a lot of contents to cover and we want to make sure she can cover as much as she can. 
>> To folks that can hear, we practiced and technology was working, when we practiced. We did our to try to be prepared for you. We are sorry about the technology. 
>> It looks like we are having a few more people come in we will give it one more minute and then we will get started. 
>> All right. I am going to get started and hopefully this is a good sign that Donna is typing. We are going to get started. We are going to record this meeting and the captioning is going. Okay, Donna is in. Rate. 
>> It looks like Jennifer is not. Do I need to type her a message? 
>> Let's go ahead and copy the number. You can give her some further instructions if you would like while I get things started. As people are coming into the room and getting the technology started. I do want to welcome everyone to the webinar. I am Robin with NCBD . There is a lot of content to go through and we will get started. As you have heard we have muted the phone lines to reduce the background noise. The question and answer session will occur at the end of the presentation however you can write your questions in the chat pod at any time during the presentation. It will be monitored throughout the webinar in preparation for that question and answer. As I mentioned this webinar will be recorded and archived it will be posted on the website as a past one was posted. We do want to remind you to be mindful of your comments and refrain from personal or sensitive information. I am going to start the recording and I will turn it over to Megan when it is set to record. 
>> Hello everyone my name is Megan and I am a board member with the CHARGE  Syndrome Foundation  I would like to welcome you to the CHARGE Syndrome Foundation  second webinar and tonight's webinar is titled, Laying the Foundation for Communication Exchange: Practical Strategies . As you know, the CHARGE Syndrome Foundation is a not for profit organization that  provides support to individuals through the CHARGE  and their families. If you like what you see tonight and you believe in the work the foundation does in behalf of the CHARGE Syndrome Foundation, please consider becoming a member of the foundation or making a donation through our website . It is an honor for me to be able to interview Doctor Susan M. Bashinski , the graduate program director and the director of special education at Missouri Western State University . Her passion and research is focused on enhancing communication development and individual complex disabilities. I suspect some of you may have seen her at a past CHARGE conference  and the webinar series a few weeks ago. It just so happens that working with individuals through CHARGE and their families  seems to be one of Susan's very favorite, if not most very favorite thing to do. We are extremely happy to have her with us tonight. She will do her presentation and then there will be time for question and answers at the end. If you have a question please feel free to write it in the chat pod on the right-hand side of your screen and we will be sure to cover as many as time will permit after she has finished her presentation. You can also unmute your phone and ask questions that way, as well. We thank you for your continued support and for joining the foundation and Susan, this evening. Without further ado I will turn this over to Susan. Enjoy. 
>> Thank you so much Megan. I don't know how much of that is true but the part I can say is true or that I do love is trying to study and figure out the puzzle of early communication development and, even though teachers are not supposed to have favorite,  teachers do have favorites and they don't always admit it. My favorites are working with young adult and children's in CHARGE , it is my passion and I love it. I have been a lot of different conferences and chances are you have seen me at one of them. Let's get started. As usual I have too many things to say and not enough time to say them. Ashley had written in were you supposed to get an email with the first PowerPoint? Not to my knowledge but as explained. The recording of the webinar will be posted. I think and hope this information will pretty much stand on its own. I think it will make more sense if you had participated in the first webinar or if you were able to do the recording of the first webinar and we don't have time to go back. Hopefully the strategy of what you can do will stand on its own tonight. Let's hope that is the truth. This is exactly the same slide I used before we don't need to beat it to death. In the first book that was written about CHARGE , the book opens with communication, communication, communication. For 25 years that has been the mantra of what individuals with CHARGE Syndrome need the most. It is the biggest  barrier to their success, communication. That is why we are talking about communication and talking about developmental issues, theory and preliminary strategies these. We will look at strategies very specifically and what I hope by 8:30 PM my time, or whatever time it is wherever you are these will be things you can do, things you will be able to give an example generate at least one example, regarding a familiar learner, upheld development or different communication modes for receptive communication and expressive communication might be very helpful. We are going to go over how you can develop a pair of receptive and expressive nonsymbolic communication dictionaries for a particular learner with CHARGE . You should hopefully have some new information about routine and how to build routine to make them critical contributing elements of a child's life at home, of a child were teenagers school program because routines make so many contributions to helping learners feel secure and safe and trust in their relationship. We know that is a foundation for learning to communicate and wanting to communicate and being able to learn. Again, this is a repeat. There are 2 things I have to say again. I believe in my soul that there is not a single learner alive that does not communicate. They may not communicate in ways we do or they may not communicate in way that the world understands they may communicate in ways that are video syncretic or unique but they communicate and their behavior gets more rambunctious and more aggressive they are just screaming more loudly at us. As we raise our volume they raise the intensity of their behavior. They are talking to us we just have to learn to understand. Many learners who have CHARGE are primarily  NONsymbolic in their communication.  They communicate using the unique NONsymbolic form.  That is what we are going to build our dictionary around tonight. How you can systematize those to learn and achieve. We went over about 18 communication reminders and I have pulled two of them out to remind you tonight. I think they are so critical. When we are working with learners with children who have CHARGE  and are NONsymbolic in the way they communicate,  movement and tactile aspects are very important. I don't mean tactile aspects in forms of tactile sign language. Kids will express their memories and they will recognize "memories" if you  repeat to them in movement or pattern of movement of tactile aspect of that shared experience you are trying to recall or that shared experience that you want to communicate. The second one, is one of the main objectives for tonight. It is so important. Learners who experience CHARGE , the way in which they receive information might be entirely different from the way that learner expresses information. Receptive communication is a different mode then expressive communication. That is how it is achieved. One example, I worked in CHARGE for many years.  Almost everything he takes and or receives from the world is through manual signs. The family signs to him, his teacher signs to him at school and this is the way he expresses information. He does not express at all, he has in the last 10 years may be used 8 signs, 10 times. He does not sign. He uses gestures. He uses a lot of gestures that are not symbolic and pictures that are symbolic and he is beginning to use a speech generating device, a touch chat application on an iPad that he will use in emergency situations when he really wants attention or is hurting very badly. He receives through sign, expresses through gesture, pictures and he is beginning to express through touch chat with an iPad. The combination with which you are kids communicate maybe different than that. It does illustrate that it is not sign in sign out. Hearing it or speech out. Hearing invoice out. It could be a mixture of things and that is fine. Communicate and systematize, we do not care. Learners who have CHARGE require  their communication partners to be very plan full. As partners of kids with communication partners we must plan. We must plan how a learner is expected to receive information and every activity we do. We have to figure it out in advance. We cannot do it on the fly we have to plan it out. We also have to anticipate what it is we expect the learner will do in every activity. And activity with the family at home, instructional activity at school or a social activity or extra curricular activity. We have to plan ahead. It is also important that we consider the environment. What is going on in the environment? We have to think about the noise in the environment, the sound, noise ratio or the speech sound to noise ratio. We have to think about what is visually going on, does it match the learners visual field, their visual acuity, is it too cluttered and the learner cannot sort anything out? We have to think about the environment. So many kids with CHARGE have similar issues and balance challenges, motor challenges, we have to figure this out.  We have to figure it out in advance. We cannot do it on the fly. What are the specific strategies? Enough already, tell me what to do. What we are going to do is we are going to try to achieve a goal of equal partnership of communication partnership so that you, as a person without CHARGE takes a turn communicating and then the learner with CHARGE takes a  turn communicating back to you. You take a turn back and the learner takes a turn back. We have a loop.  Somebody sends a message and the learner with CHARGE receives it.  The learner with CHARGE sends a message and you receive it. We are striving for equality. That is not how we begin . You will see in a minute, the strategy I'm going to suggest you need to implement to begin, most of the responsibility is on the partner. I know that and the partner has to set it up to make it happen. Overtime we scaffold and build with the learner so the learner can assume an equal role in the partnership. How to partners do that? The simplified version is these four things. A positive attitude, you have to have an expectation that that child at home, the learner in the classroom is communicating. You may look at her and not know how she is communicating or not know what she is trying to tell you. I wish I understood, I am trying. You have to go in with the expectation that whatever he or she is trying to do, whatever behavior you are seeing, the gesture and the movement, the sound, that is communication. We have to organize it and assign meaning to it. If we are wrong we start over and find a different meaning to it until we seem to get satisfaction for all the time and behaviors we are getting, that they are communicative in nature. That learner is telling us something. I like this, I don't like this, I want that, get away from me, whatever is going on -- 10, as a partner, number 3, you have to be very responsive. The first dictionary we will build is for partners to teach a team of partners the home and school team to all respond to the subtle cues a learner gives you in the same way. We all know the consistencies. Parents know that and teachers know that, kids need us to respond to them consistently. It is true how we respond to their communicative attempts. By attunement. This is a word that European researchers use more than American researchers use. I think it is important. Another way to say it is be plugged into your kids. Be present with your kids. Be attentive, don't be distracted. Watch for subtle signs that you can grab one to and build to turn those things into meaningful communication. How you do it? When your child is at home or if you're provider is at school if there is not a structure time watch that child and see what she does. I would venture to guess she is doing something. Maybe she is only engaging in things and maybe there is competitive movement or a slight rocking, maybe there is a certain sound that is made that might be coming. We don't know. Make those notes. Maybe she is flipping a piece of paper. Whatever she is it doesn't matter. Make notes. We are going to build activities. We will follow the learners lead so that we know what is going on. Maybe sub conscious information or indirect information this person is engaging in this thing with you. The reason we are doing these first things the reason we are doing the first things on the slide is so we are gaining number 3. We are going to take those signals. Whatever other kid does on his or her own, we will start joining them. Those are signals. We will see them as potentially communicative and we will embellish them. We will build on this. We are going to directly teach that child that what they are doing naturally can turn into communication. The communication has to be directly taught. Kids who are typically developing learn this incidentally by observing the world and being alive. So many kids with CHARGE  have lapses in their vision and hearing and balance and smell or other sensory's and they are not going to automatically pick these things up by observing the world. We have to directly teach. What are the things we are going to do to facilitate the movement for those of you who have looked at another webinar who are with me. The ability to think symbolically. How do we facilitate that movement? We will use action. We will use movement we will use touch. We are going to use things that that particular learner likes if they are motivated by flashing light or spinning toys we will use them. If that learner is particularly motivated by pressure we will use that. If that learner is particularly motivated by Thomas the train engine we will use that. Whatever that kid likes. Spiderman, it doesn't matter. We will build that into our interaction. We will play, play gets more complicated as you work with older children and to work with teenagers. Maybe, I should have said play/leisure activities. We are going to regularly implement routine which is how we will wind up our conversation this evening. Through all these things you will be responsive to whatever it is your learner does. The strategy I am going to talk to you about tonight come out of this model. I apologize for the poor quality of the picture. It is not the best. There are 5 strategies that are part of this model called the TRI-FOCUS model. They revolve around either  -- any communication is one directional. There is a learner, communication partner and content and when which we are communicating. Video, a captioner, phone line. That is the context. The learner and partner. If those 3 are all in sync,  bingo we end up with a triangle in the middle. We have effective communication and that is what we are striving for. Here are the 5 primary strategies in this model. The 3 and orange are the three I'm going to talk to you about tonight. You may ask why we only talk about 3? There is not enough time to talk about all 5. We are talking about the ones I have selected because I think they are the most critical these strategies are not intended to be implemented in a linear order. After you do one you master it and they are all supposed to be used concurrently. You can insert 4 and 5 as we talk about 2 and 3. Sensitivity, augment input and structuring routines. Those are the 3 main strategies we will work with this evening. Here we go, enhancing submitted -- sensitivity. We define this as partners, you need to be aware of, receptive to, whatever subtle cues someone else is giving you. If you're a teacher it is those not-so-subtle cues. If you are in front of a class, and you notice it, it is not-so-subtle. Is that kind of thing. You're supposed to be aware of the non-verbal, nonspeech, nonliving stick being that that child, that teenager who has CHARGE  does in response to various stimuli in the environment in response to various things you ask of him or her, when you take his or her hand to take them somewhere, whatever it is. That child, that teenager will do something. You make note of what that is the strategies we are teaching in the section all target how we partner in the communication exchange changes behavior. Partner changes behavior in order to develop the learners behavior. Why does this work? Research shows us that if partners will consistently respond to the potential communications a learner gives, communication skills grow. If partners consistently respond to those potential signals, kids communication becomes more purposeful and more intentional, it is something they do repetitively. Those things fit together and they increase and start looking more like ways other people in the world communicate because they recognize the signals. These are 6 kinds of signals that I am encouraging you to watch for in your child or in the learners you teach. In a lot of the literature, the first one is written. Look over here, then I look at you, then I look over here. What I am trying to tell you what the behavior is this glass of water, I want to drink of it, do you get it? In looking at the water and then you and in the water and then you and then the water. There is meaning there. You as a partner will say, "you want to drink" here. Let me give you a drink. I didn't write it as gaze shift because kids who are blind or kids who have severe visual impairments, they may not be able to use gaze shift any further than 4-6 inches to their face. They can and do shift their attention. If you watch it tennis match you watch the people in the audience and turn your head and your body. Be here sound -- they hear a sound and they come back to you. Hopefully I wasn't too far away to pick that up. I am sorry. I have to show and tell he can't sit still. Other ways, kids will shift by the way they search. A search with their hands, if they have super limited vision or light vision or no vision, they will shift their attention by the way they are searching with their hands in the environment. It already is communication you can turn it into more purposeful, meaningful, conventional communication. The second thing you can watch for, if you of the child that is reluctant to initiate behavior and you're trying to get them to stand up and the kid will not get up, that also will have meaning. In may mean that they do not want to. It may mean they are scared. What you want me to do? I am feeling anxious? My foot really hurts right now! I don't want to stand up because I don't my shoes on -- I don't like the way the floor feels, it is an uneven surface -- sometimes people with visual impairments are very cautious of standing on uneven surfaces. You have to watch that child to get the meaning. Reluctance is a signal of that learner having something to say. Persistence. I think every parent in the world can identify with this one. You have a child, a lot of times on the leg of your trousers, since you can't see my trousers I will use my jacket. You have a kid yanking on your sleeve. They are linking on your sleeve and that means will you come here. Will you come over here and get me what I want. If that signal persists and they do not quit, hello -- pay attention -- they are trying to say come over here, come get me some goldfish crackers. I need to show you something. I want to know what this is. I want to know who this is. Again, we do not know what it means until you look at the learner. It means something no. Number 4 on the list, change in the form or quality of behavior. Recasting. You are recasting a signal. That is when the kid is tugging on your shirt and then they start really tugging on your shirt. They start hitting you on the arm or clapping or they start rocking work clapping quickly and screaming while they clap. That is a recast. It changes what the behavior is. It changes the signal that the kid has something to tell you. When a behavior stops, termination of the behavior. If you do a certain thing and the child is pulling on the shortstops. Make a note of that. When I scratch her back she starts yanking on my shirt. Maybe figuring the meeting. A display of satisfaction, scream, push away, rejection, anything and anyway the kids let us know they don't like something or something hurts or they are protesting. However they show you that, we will capitalize on that and make it consistent for the team. I am suggesting you consider using a form like this and the next sheet is the same but has some examples on it. I will go ahead and flip over to this one and give a couple of examples we can talk about together. There are two examples. You would fill in the learners name, your own child's name or the learners name in the blank so that each time Susan does this, it would be interpreted to mean and we would do this in column three, Susan's partner would put it in column for and how Susan's partner would how to shape more conventional behavior. Jennifer is my teacher and I am the learner. I have fairly decent vision in this example. When Jennifer my teacher gets up I am going to watch her. I am going to watch her walk around the room. That needs to be noticed. The team and the family gets together and talk about behaviors from home. What you think it means? You do a brainstorm. It could mean come over here or talk to me and it could mean the exact opposite. It could mean do not come up here I do not want you bothering me or do not come over here. Again, it would be unique to the child and the other things you observe. Maybe it means I wonder where she is going. We do not know. Whatever you think it means -- let's take one example to try to fill this out. When my teacher gets up and I watch her, we are going to interpreted to mean I want some attention from you. I want some attention from you. The team will agree that when they notice me, the learner watching them it means they want attention. They will say or sign and the partner will walk toward me. Come towards me and maybe sit on the floor or pull up a chair and sit next to me and going to say or sign that you want to talk or do you want to show me something? The team needs to agree that we are all going to say when Susan follow someone with her eyes it means she wants attention from that person and that person is going to walk toward Susan and sit down beside her and that person is always going to say let's play together. The way we are going to shape that into more conventional form is maybe we will take a toy and we will play with it and then put it in her hand and help her manipulate it and play with it and suggest she give it back to us. The 4 columns are contingent on what the meaning of the item is for that particular learner. Let's take the other example. Christopher is another learner in the class he kicks his feet when his wheelchair tray is removed. He kicks his feet. The team, including the family, they need to do a brainstorm. He loves that because he wants you to take off his shoes. He thinks you are going to take off his shoes and someone else might think it means he is kicking his feet because he is protesting and does not want you to take the tray off the chair. You see how this goes till you get a brainstorm. Then, you get a consensus. More people, do we know? We don't know. But you get a consensus. If eight people think it means that Christopher is excited because he wants his shoes taken off and when you take up the wheelchair tray it usually means you will take off his shoes, eight if eight people think that and only three people think it is because he wants the tray left on, we are going to start and go with what will be interpreted to mean take off my shoes. The partner the partner will say shoes off and maybe try to shape it to a more conventional form and introduce an object or a gesture to push the shoes away. After the shoes come off, put them on a place or a chair near him and prompt him to take his hands and push the shoes away because that is more conventional. I hope that makes some sense. I wish we could have a dialogue it would be more meaningful. What I have, on the next two pages, we are not going to read these together, these next two slides, you can get to the PowerPoint and the webinar recording on your own. It is a listing of these steps I have just gone through with you. Watch the child in a variety of situations with partners. List all the potential things you see and look for patterns. Look for those patterns and come to a consensus. Pick a few of these and assign a meeting. If everybody thinks yes, he is kicking his feet when you take off the tray because he wants his shoes off you have a higher chance of success because more people have interpreted it to mean the same thing. You then will try it and do, say and scaffolding and everyone will do at the same way. You will take data and if his behavior accelerates, maybe now when you remove the tray and take off his shoes he starts crying or if he starts screaming in a negative way than the team needs to backup and recalculate. Sometimes they will be wrong. The team goes back to the drawing board and rewrites that signal in the dictionary to say maybe it means put that dang tray back on here. Put the tray back. You rewrite it and the meaning is do not take my tray. I want my tray. The do is put the tray back on. Say sorry, you want it. Try to scaffold something that may be a gesture -- you can't see me and I am sorry. If this were the tray -- you can't automatically go to a signed to say keep or I want that is too big of a jump. You can go with gestures that say I want this darn thing, leave it here, do not take it away from me. The most important thing is number 7, stress to every single partner the importance of consistent, immediate responding. Do what the dictionary says. Whatever you write out in this dictionary, for these columns, every single person, mom, dad, grandma, brother, sister, teacher, whatever is on the dictionary, everyone has to do with the same way and immediately. That is the only way it will be meaningful. I get asked all the time, how many things should we put on the dictionary? That is the magic number. I don't know. I is good -- it is going to depend on the team. Let's say you have four members on the team. This person can always remember to do all the steps for 7 things, this person can always remember only 3 things, this person can always remember 5 things, this person can always remember 6. The number you put on the dictionary to start, should only be 3. This member of the team can only consistently remember to implement 3 things. It is better to have fewer items, fewer signals on the dictionary that are analyzed across and have every single person do it the same way, every single time. After those get learned you can add a fourth. You can add a fifth. Some of them can come off because they will become automatic responses to members of the team. One is not enough. 12 is too many to start. It is somewhere in the neighborhood of 3-7, i don't know. The number you put on is the smallest number that any single team member can remember. I hope that makes sense. I hope that makes sense I wish I could see your faces. Why do we do this? Why do we say we have to do the sensitivity things? There is huge, huge benefit to the kid. If we as communication partners repeatedly interpret the things they do, even unintentionally, the things they do, the signals, it does help shape purposeful behavior. It really might help shape communication and and tension -- intention. That learner begins to really understand that he or she can impact the environment. The learner begins to understand that she has some communication power. That is amazing. That is like with kids who are typically developing, when they learn hand! How much of a response they get when they say "no". They learn the power of communication and that power serves as motivation. The third point that is the benefit, it just shows dignity. A respect for dignity, I am sorry. We are showing respect for however that kid is communicating with us. He or she is doing the best they can the only way they know. Even if it is challenging behavior or spitting in your face, if no one has ever taught her another way, it is up to us and communication partners. It shows that respect and all the kids deserve our respect. I think it is really important when you are building these dictionaries. I will say this for all three we are talking about. You work with teams. This IPCP thing, if you have not seen it  in the professional literature, interprofessional collaborative practice, big fancy word that means work with all the team members on your child's needs. Interprofessional collaborative practice. We all have to collaborate with each other to make them happy. In regards to this example in particular, PT and OT can be especially helpful to help us who are not motor specialists to identify movement that shows readiness for interaction or movement that shows responsiveness. We don't want to to start building on reflex. Kids bodies are responding and they can't always control. The motor special, the PTs, OTs, they can let us know which movement  can be controlled and which ones show readiness for interaction and which ones we can shape into intentional communication. If we work across different relate us service providers that increases consistency of partners responsiveness and that is a win/win for everybody. We don't have quite as much struggle, where you have that struggle where they say they know when Lance is thirsty and another person says they don't ever have a clue when he is thirsty. Another person says he shows me how he is thirsty. People are all over the map when we talk about kids often have trouble generalizing. Have you read about that? Transferring fields from one environment to another, if you use this sort of a dictionary where everybody plays and plays on the same page, when Christopher is kicking his feet, when the wheelchair tray comes off, I want my shoes off. Everybody takes off his shoes and everybody says shoes off feels good and helps them push those shoes away. We are going to get generalized behavior across people and generalized behavior across environments. I hope that makes sense. Here we go. This is the summary. Everything I have been talking about for the last 20 minutes, it boils down to this. When I say enhance sensitivity I am making a plea to you, I don't like to beg but I am almost begging. Except that learner's message. Except the message. You need to listen with more than your ears. Accept the message.  You have to listen with your eyes, your hands and your heart. That doesn't mean stop listening with your ears but that means don't limit your listening to your ears. That was part one. Take a breath. That is strategy number 1. We are switching gears. I need a drink. Strategy number 1 enhancing sensitivity was all about building how that learner sends messages. All about building how that learner expresses communication. Now we are doing the flip side. The second strategy, augmenting input this is enhancing meaning and facilitating retention by pairing verbal input and alternative modes. The second strategy is all about building receptive communication or understanding of communication. It all should be multi modal don't just talk or just sign you have to do more than that. Learners who express in other forms then speech have fewer opportunities to receive and understand information they really need models and they need their partners to express to them in different forms. We are going to talk about how you, partners of communication can pair speech with sign and pair speech with gestures and pair speech with pictures and hair pair speech with objects. All those things, they are all what constitutes making communication multimodal. Another word for form, multiple forms and communication will be multimodal. We are going to talk about 2 primary categories. I am suggesting you use these or consider using maize to enhance maize to enhance  your communication in kids understanding in addition to your speech. We were going to talk about touch cues and object cues. The first group is touch cues, what is a touch Q? A touch Q involves tactile contact made in a very consistent manner, directly on the learners body, to communicate with him. This is the part you may not be familiar with. That Q is made directly on the learners body to communicate with him. It is a touch Q or tactile contact made consistently on that learners body to send him a message that, hopefully, he will understand. He will receive it and understand it. What is the purpose? The purpose is to communicate with you as a communication partner. I want you to stand up. I want you to lift up your bottom so I can change her diaper. I want you to walk outside with me. I want you to -- fill in the blank -- that is the intention and the partnering communication but we have to communicate that with away the learner can understand it. For kids that are nonsymbolic it will not understand it if we only say it. It will not understand it if we are nonsymbolic even if we only sign it or use keyword signing. Signs are symbols. We have to do something different. If we used touch cues it can help reduce kids startle reflexes or it can reduce challenging behavior because it gives kids an idea that something is going to happen it gives kids an idea to anticipate that something will happen. They may not understand it but something will happen to their body. I think that is a respectful thing. One of the biggest challenges, for me, when a visiting classrooms is to hold my toe. I have seen people walk up behind children or teenagers who use wheelchairs, not say anything or do anything and start pushing their chair across the room. I want to scream, "do not do that it is not respectful you have to give them a warning you will move them." If somebody came up behind me and started moving this chair I would probably shout profanities that that person or I might do something worse. I may slide them. It is not fair. It is not right. I have seen people who change kids diapers and they pick them up out of the equipment and lay them down on a changing table and they do not give them cues that something is going to happen to their body right now. I am making a plea to you to use these touch cues to let the kid know what you are going to do to his body and that is a support of comprehension or understanding. It builds receptive communication. If you only build expressions and you don't build understanding you are not getting anything. You are not. All of us, our receptive communication. The words, the vocabulary, it is so much bigger than the vocabulary we use in our writing and speech and signs. We have to builds receptive skills. What are some guidelines? It is very important to know if the kid has any neurological disabilities. If the learner has spina bifida as an example in addition to CHARGE  or has diminished capacity to receive touch cues because of CHARGE , you are not going to deliver the touch Q in an area the kid can't feel. A child with spina bifida if you touch them below the waist or the hips. They will not feel it. You may as well not deliver it. Another thing that is important to know may be a learner with CHARGE is very  tactilely defensive. Maybe they do not like to be touched on the hands of the face but if you touch on the arm it is okay. You need to know that so you do not deliver a touch cue on the hand or the touch cue on the face. You don't want to  set the kid off into a defensive reaction. How do you do it? First thing, talk to the family. The family is going to know better than anyone else will know. Collaborate with all the professionals on the learners team but especially talk to the PT and especially when you're talking about sensory ability you will talk about occupational therapy. These are important guidelines about touch cue . It is important to think about what a learner prefers. Some kiddos are fine with the light, feathery touch and some kids get set off by that. Some kids 18 firm deep pressure. Some kids get set off by that. You need to know those kinds of preferences as well as the placement for where you will locate that. I would also say, not everyone agrees with this, this is a Susan M. Bashinski opinion.  I think it is important that you never force a learner to accept eight touch -- a touch cue or engage in  mutual touch conversations. Some people think the only way is to force it and I do not agree with that. I do not think that is respectful. I think that sends a message to kids who are nonsymbolic and do not understand those words that what you are doing does not mean anything. I don't care if you don't like it we will do this anyway. I don't buy it. I think there are some things we have to do for children whether they like it or not. If they have liquid medication and they hate the taste but that is what is used for managing seizures, you have to give it to them. If a physical condition, you have to do range of motion exercises, you have to do that so kids don't use -- lose range of motion you have to do that. That is not a mutual touch conversation. This is an option. I don't think we should ever force people to engage in those. The third thing that is important is if you are going to, as a team, decide on something that will be a touch cue, they should be very different  from typical, physical contact. If you are a family that is a touchy family and you hug a lot or mess a pair or when you walk past you scratch on the shoulder, those are not going to be good touch cue , those are just ways to say what's up. I'm touching you because I like to touch you. Know. Those are social interactions. Your touch cue will be  deliberately chosen to communicate a meaning. They should be differentiated from that routine, physical contact. Here are some examples. If the kid is lying on his back and you are getting ready to change the diaper before you actually raise them up and start doing that maybe lift up slightly on the learners hips and say we are going up, ready? We are going up. Then you lift the hips to change the diaper. The second one, this is not rocket science I don't mean to insult your intelligence. As you are trying to get a child or teenager to use a walker or stand up out of the chair, before you go in there and lift up, gently -- my hands of the teacher and my arms of the kid, take a hold and say we are going up -- then you would stand the child up. May be on the left elbow, every time as this preschoolers teacher say hi, I am going to touch you on your left elbow. Maybe another teacher will rub him on his shoulder and say it is Bob. We will have different and deliberate ways to say hi. If you have never looked at this website I would encourage you, with all my heart to look at it. It is called project salute. What that stands for is successful adaptations for learning to use touch effectively. I think most special ed teachers know about project salute and for $1 million they couldn't tell you what salute means. You don't have to know you just need to know project salute. If you go to that site, it is out of California, it is phenomenal with information about touch cue  and there is no need for me to try to teach you anything else because they have done it. Particularly, if you go to the section titled what we have learned, information sheets, it is sheets that teams can print off and share with families or if you are a family member and you don't think your child family has a clue about this you can print it off and share with the team. Go to project salute there is tons of information. I especially like the stuff about touching. Changing gears. We are now going to talk about object cues using object cues is exactly what you think. And object Q is in object or part of an object that is used to refer to something. It can be used to refer to a person, place, thing or activity. Anything. Primarily, nouns. That is where you start. Object cues, they are tactile and textural and they can be used in a more symbolic way, even to represent days of the week or month or year when kids are nonsymbolic you need to use object cues to represent these nouns. One of my favorite is shown right here in this picture. This is a teacher of the visually impaired working with the gal with CHARGE.  This sequined wristlet, she wears it every time she works with this little gal and it says I am Miss Emily. The way they start their sessions together, if you see this hand, right here, this is a little girls intervener. She used to have to totally, physically assist the little girl and now she just has to support her arm. The little girl feels the bracelet and she knows that that is Miss Emily. It is now time to work with Miss Emily. I think for the major people who interact with the learner who is not symbolic, it is important for a learner who is not symbolic that the people who work with him every single day have some kind of personal identifier. If that kid encounters 12 different people every day, it is too many. Pick the key 3 or four or five people do not go more than that. Have that person create an identifier. It needs to be something that is always going to be the same that is how you start when you work with that child you introduce yourself like what we introduce each other we may say hi and start talking but that is because we can see each other. I know who you are and I know your name. Kids who don't have vision or hearing or good hearing or language, this is the way this person tells them they are working and who it is. Another example you can do it without objects but it is a personal identifier a team came up with this this is not my idea, I wish it were because it is brilliant it is a way that members of the family help this little gal know who they were they all kissed her to say hi to say hello but they were randomly kissing her in different places. She's a little girl they would kiss her all over the place. They came up with the way, after we talked about some of the stuff. Mama always kissed her on the right cheek so when she got kissed on the right cheek she knew his mom. Grandpa who lived with them would kiss her on the top of the head and daddy would kiss her on the tip of her nose. Is not brilliant. Everybody is kissing her but over time -- when mom first started her grandpa first started to that little girl know that? But repeated consistent implementation helped her learn. Oh that his mom. Even if she didn't have words, that is the person that smells good and has a long hair and whatever else -- kids don't have the language but she knows who it is. She knows when she gets kissed he or she knows who it is and what they typically do together. That is what these personal identifiers do they are so important. Other examples that teachers can do and families can do at home is kids have vision even if they don't have clear acuity you can use colored tape. There are so many different kinds of colored tape to indicate a path to get to a place. You will see this in hospital sometimes or in arena buildings, they will have green arrows painted on the wall or blue once to get to certain sections. You can do that on carpet or linoleum or tile floors to indicate a path should be followed. Follow the blue tape to find your bed. Follow the blue tape to get to the cafeteria. Again, saying those words have no meaning but that is what you are putting down. Over time you can introduce other concepts. With one teacher we got a variety of textured carpet squares from indoor outdoor to shake and all different kinds. They are guiding the learner from her desk to the door of the classroom we use vinyl to guide the learner to the desk of a certain area you can put an identifier on the desk so they know which room they are in. Now you're in the art room, six grade, kitchen center, object cues can help kids get anchored to where they are or can give them anchors to go where they need to be going. Why do we use them? We need to use object cues to provide a concrete way to support interaction their purpose is to support comprehension the way we usually tell kids where they are and where they need to go. Families as kids to do things multiple times. For kids who are not symbolic it won't work. We have to find more concrete means to support those conversational interactions. Some guidelines, again, the kiddo have sufficient motor ability to explore and manipulate the object. Most kids with CHARGE will have  sufficient fine motor ability to handle or manipulate things. You may have to be careful in terms of how finite the distinction is if their sense of touch is not well developed. You also need to consider, does the child have sufficient vision and hearing to process that object features. If you want to use shiny or flashing lights and streamers and reflective sequence, you have to know if the child has vision enough to discern the difference. If you want to use toys that make noise or signals that make sound like a bell you see on the counter of a business, the kid has to be able to hear those things. You have to think about motor ability and think about sensory ability and here is an absolute. You don't hear me say always or never very often. Those of you who don't know me don't know that. Always avoid using miniatures to represent things for kids who are blind or have significant vision loss. My favorite example. There was a time, I am showing my age. There used to be those keepsake boxes where there was miniatures of everything and the memory thing. Of blender and they would put the blender in the box. Why does the blender that is made out of plastic that is this big, why does that represent a blender to you and me? The only reason it does is because we can see what the real blender that is heavy duty metal and makes a whale of a lot of noise and has buttons that we can manipulate and with the come off, we know what that looks like. A kid that can't see has no connection with the plastic thing that is this big. It has no connection at all. Do not use miniatures. You want to find objects that are somehow connected to that person, place, thing, activity etc. We have 2 more guidelines then we will do examples. Once again, not everyone agrees with this. Never forced the learner to accept an object you were to engage in exploring one. I am not saying trite once and if a kid goes back to try it again. No, I am not saying that. Try it once and if the kid pulls back and doesn't like it put it away, go back to it later. Maybe later that day or the next day. You have to keep trying to introduce it. If you try to introduce something in the kid pulls back, do not grab that kids hand and forced him to explore that the. That is not fair and forced him to explore that the. That is not fair  and respectful. Do demonstrate how to explore the object. If you give the kid the object you may have to do hand underhand and used tactile modeling to feel it and see what parts move and what sound it makes. You have to help the learner explore that object because maybe he or she has never handled the particular ring before. You want to do it gently, especially in the beginning because you do not know what the response will be. Here are some examples. You may use some kind of a bag, a canvas bag her back pack to mean get your things is time to go home. That is a direct connection like a bag where you can put things in it. This one is a little more obtuse, sometimes we need to use more or less concrete items because how will you say take a break? You won't break something in half, that doesn't make sense. Why do I sometimes use bubblewrap? There is a lot of people who are typically development people to get a charge out of popping bubblewrap. It is cool and fun to pop bubblewrap. I use it to say let's take a break or free time. You can also use parts of objects. With the plastic bottle you could cut off the top of the bottle and that could mean it is time for lunch. We are going to have a drink let's go to the table for lunch. You could use a partial slipper to mean it is time to get dressed. If the clothing you are putting on has a zipper or if the clothing you are putting on has buttons you do not want to use a zipper. These are some examples. What is really important, when you are using objects as cues, you need to mount them on something. These are mounted on foam board which is heavy duty you can buy it at a hobby store. What I used to do is mount one learner's object cues on blue and a different kids on yellow and a different kids on white so I could remember whose were whose. That was to help me and the other partners. Why would this have side of the glass and the other a rim? You want to pick your object Q on the basis of what the kid will encounter first. For kids who have blindness,  some kids with CHARGE do. The first thing they will encounter  when they see if there is liquid in a glass to drink as they will put their fingers over the rim of the glass. With other kids who may be able to see the cup or glass, they will see it from the side. I would then use the one like the yellow one in the middle. These have to be customized to your child. You will mount them and the reason you mount them is so you can tell what is the real object and what is that object representing. Those object cues -- again go to salute, it is fabulous they have a section on object cues and the best section is what we learned, information sheets. This is great information. Use their stuff. We are going to wind this up and I am almost done. We are not going to make it to routines. I have a form on the dictionary element. I am the students and we are going to tap 2 times on my ankle to say I am taking this off now. The partner will take it off. You have to have something you will indicate what you expect from that learner. The whole purpose of these object cues and touch cues is to build the kids understanding. To build the comprehension. The kid will have to show you something so you can know they comprehend it. You will tap twice in my ankle to say we are taking it off. Maybe if the kid could lift his foot off the floor or off the foot rest maybe you would expect him to lean back in the chair. May be one him to lean back. Whatever it is, I understand and I will help you by doing this behavior. This is an object Q. Placed a handle grip it may mean time to get your walker. The partner will go and get the walker and put it in front of Christopher so maybe what is expected is he will reach out to the walker. May be he will skewed his bottom forward in his seat. Again, whatever he will show you to say he got it or message received, it is done. The next two slides of the steps I talked through in case you did not remember them. How will you choose the identifiers that match the features. Customize the touch and object cues to the learner. Stress to partners the importance of being consistent. How many, the same argument I made before. However many you can count on the weakest member of your team to consistently implement. You can always add more. Wife? Because, if you repeatedly pair touch cues and object cues with your speech, over time, the kids may start to understand those words. It gives the kids with CHARGE support  for comprehension. The words don't mean anything if they are really not symbolic. Tone of voice means something if they are nonsymbolic. Movement means something if they are nonsymbolic. Maybe, one or two or three, a few words and a few signs mean something. When we go through this whole diary and it is time to change, it doesn't mean anything. I'm sorry people it doesn't mean anything. When you are working with teams, that is all this crazy acronym means. The speech pathologist me be Mary instrumental in leading the team and what the most appropriate forms are. The hard of hearing will be able to support the team in understanding how hearing influences what type of augmentation that learner needs. All the stuff down here, this is a feature of the visually impaired. A speech pathologist that can really help with form. Eight person that is an expert in deafness or hearing loss will help influence how sound plays into this system in choosing form. The teacher who is the expert in vision will get information about the size the object needs to be, how much contrast needs to be in the visual representation and how you choose certain colors for those objects and so forth and so on. The bottom line, again, if you take the last half hour, what it means is you will enhance meaning and hopefully facilitate the kids retention by pairing verbal input and by pairing speech with alternate modes. Bottom line is talk with more than your mouth, talk with more than manual signs. Okay? I do have a few slides about routine but I am thinking since we only have seven minutes left I need to cut that off and see if there are some questions. I will put these up and leave them in the slideshow. If people want to see them, the bottom line, to me, when you are working with kids who are not symbolic, they need you to make communication concrete. Listen with your eyes, your hands, your heart that is how you build expressive communication. Talk with more than your mouth. That is how you build receptive communication. If you have questions about anything I have talked you have questions about anything I have talked  about. There were 12 slides I didn't get to. didn't get to.  Just 12. If you want to look at them and talk to me about them I am willing to talk about them but I think I need to leave time for a few questions. Think you. 
>> Thank you Susan. We have five minutes. If anyone has a question you can put it in the chat part or a new earphone and ask the question to Susan. I am thinking because she didn't get through maybe this is a reason to wrangle her back. 
>> I tried. I really tried. 
>> We are just gonna -- 
>> I even had the times written out. I didn't make it. 
>> I know. The secret most people don't know is that Susan taught me to teach a gazillion years ago. It is like I am in graduate school again when I have her speaking to you guys. Does anyone have any questions? That she can answer quickly? 
>> Why you you are typing did you notice that she said I was her teacher a gazillion years ago that makes me at least a gazillion years old. Thank you Megan. 
>> Me to. I think we have one question. 
>> No one has said anything yet. 
>> We have two people typing. While we are waiting for questions to show up I will tell you, this happened after the first webinar, if you don't get your question answered tonight, if you email me I will answer it. I am really good about that. I am not really good about a lot of things but I am really good about answering emails. 
>> Susan, Katrina says we hope to have you at the CHARGE conference. Thank you. 
>> I will be there.  
>> Katrina, get ready. 
>> We have another question, what suggestions do you have for teacher that is in typical room on how is the best way to communicate with the child with CHARGE. She's verbal, and very smart.  
>> You are talking about the kid with CHARGE  that is verbal and very smart, not the teacher? 
>> I still believe that what I am saying about multimodal communication is important. If the kid is verbal, does she also have sufficient hearing to understand verbal input? Does she only receive information through sign? I think that if there is absolutely no loss of hearing and no loss of vision which is, in my experience, exceptionally rare for a learner with CHARGE  then I would say communicate with her just like you communicate with everybody else. In my experience most kids with CHARGE have some loss in vision and /or hearing even if it can be corrected with glasses or magnifiers or hearing aids or implants. I think it is a benefit. I think it is a benefit to all of us, to tell you the truth, if we communicate in more than one mode. Megan will tell you when I teach I roam around type pick up stuff I am trying to show you things and I am yanking on people. I may be saying can I touch you to demonstrate something. We are multimodal in our communication. Use visual support for her. Use gestures to support her. Use some of these cues to give her direction. Maybe not with pictures, it could be written words they could be color-coded or very abstract symbols. Support her communication because if she has any vision and any hearing loss, she is missing some information. We can reduce the amount of information if there is more than one mode of communication. 
>> This is Megan speaking again. I am imagining that you are going to have conversation down the road via email. He has said that the learner has loss in one year so that is more information for you. To be respectful of everyone's time. We have only one minute remaining in the webinar I'm going to say on behalf of the CHARGE  Syndrome Foundation I would like to thank Susan for speaking with us tonight.  Your expertise and perspective is extremely beneficial to helping people understand how to support the development of expressive and receptive communication in individuals with CHARGE Syndrome. I would like to  think the national center of death and blindness for ensuring the webinar works well tonight. Your input is extremely important to the foundation about the performance of future webinars. If you love what you heard from Susan and you would like to guilt her into coming back, putting that in writing would be a very good idea for you. Tomorrow, attendees that registered for this webinar will get a survey. In the right-hand corner if you would take a few minutes to fill this out this would be helpful. Also, if you missed Susan's first webinar do not panic. The link to the webinar is in the chat pod from her last webinar and you can find them on the CHARGE Syndrome  website. That one as well as this one that will be placed on here before the end of the week. Thank you Susan for all the time you spent with us and for all of the participants. We hope you have a wonderful remainder of your evening and thank you for supporting the CHARGE Syndrome Foundation. Have a good night everyone. 
>> Thank you may I say one thing before you shut down?  Melissa asked how can typical peers be involved with CHARGE let's just say I believe they can and should , write me and we will email about it. Peers can be listed and peers can help implement those same dictionaries just like other people can. Peers can have identifiers and cues. Absolutely. 
>> Yes. 
>> Thank you. 
>> Perfect have a great night everyone and thank you again. 
>> Thank you all will I appreciate your attention. [ Event Concluded ]