DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content
Please stand by for real time captions.
>> Hello Megan, how are you?
>> Good.
>> I see you in Robin, laughing at me as I sit in my office. 
>> I thought it was better to get everything [ Indiscernible] before your but what do you want me to do? 
>> It is your choice.
>> I will stay on muted but I will stay quiet.
>> We have a lot of early words. -- early birds.
>> I am reading the names. I cannot speak to the people who only have a telephone number. I do not want to be rude, but I would like to say hi Kim how are you? I can do that
>> I do not need to be too rowdy but it does let people know the audio working.
>> Okay.
>> Yes, as people are joining us, I want to let you know that we are going to start at the top of the hour.
>> Megan, this is Kim Blogger. Is there audio?
>> Are you in the Adobe room?
>> I am in the Adobe room but the rest of people are going to get the audio [ Indiscernible] correct?
>> Yes.
>> Thank you.
>> I am looking forward to it.
>> We going to start in a couple of minutes I just want to give people a little more time to join us. 
>> Okay, I show that it is the top of the hour. I want to begin by welcoming everyone to. We will kickoff today's webinar, all lines have been muted to reduce background noise. Q&A will happen at the end of the presentation. But you may type in a question in the chat pod at any time. We will be monitoring the chat pod. And this webinar is going to be recorded and it will be in the archives, on our website. In the chat pod, refrain from typing in any personal information. Megan, I think it is time to start. 
>> It is just slowly Logan, Megan.
>> Hello everyone. My name is Megan, I am the board member for the CHARGE  foundation and I am from the [ Indiscernible] and I want to welcome you to the CHARGE  webinar in a two-part webinar. Tonight webinar is in title, laying the foundation for communication exchange, critical points of understanding.  As you know the CHARGE  foundation is a nonprofit organization that will provide for families. Our vision is to have a better world for those who have CHARGE syndrome . And this is the work of the foundation on by half of the CHARGE  and their families. Please consider becoming a member of our foundation. It is a honor for me to introduce, Dr. Susan Bashinski . She is April program director, of special education at the Missouri Western State University. Her passion is research and she focused on enhancing communication development. I suspect that some of you have seen her at past CHARGE conferences . And working with families, and professional teams is her favorite thing to do. We were hitting the jackpot, because she is going to present to us tonight. We will have time for questions and answers at the end. If you have any questions feel free to type them into the chat pod, to the right of your screen. And we will take your questions at the end of the presentation. You may press star six to ask a question. We want to thank you for your support. Without further do I will pass this over to you, Susan. Enjoy everybody.
>> Thanks Megan I appreciate it. Megan is exactly right, I love to talk about communication. I love to talk about communication for learners with a very complex and multiple challenges. Children and young adults with CHARGE  for they are my favorite people. And normally teachers are not supposed to say they have favorite people or favorite learners. But when I am talking to a group of people who are invested in CHARGE  we all know this is true and I am very grateful that you took time out of your busy schedule. I hope that everyone walks away with at least one thing. Maybe something they have not thought about for a while or maybe something new. So why do we have the seminar? Many of you have seen this book, this has been in many CHARGE conferences . The way the book opens is with a quote. Communication, communication, credit communication. And for 25 years this has been our mantra. And this is what children with CHARGE syndrome need . I think this is great. They say the biggest barrier to ultimate success for individual with CHARGE is communication . That is why I am so glad that the CHARGE people have done this presentation . When they asked I would say, sure I love it. I do not want you to [ Indiscernible] but I have heard that this book is going to be updated so stay tuned to that. These are the three primary things that I hope folks will gain from the conversation that we will have together this evening. I have quite a lot and I think we have 18 communication reminders. This is where we are going to begin. I think they are common sense kind of points. And none of them are things, probably everybody in this webinar or group, probably would have thought about this if you have the time to sit down and think about the importance of it. But bringing this to the forefront of our minds will be helpful. This is the parameters of my thinking and my work. As I do research or work with individuals who have CHARGE . And hopefully some of these will grab you. The remainder of the time, tonight, will be to contract the basic differences between nonsymbolic and symbolic communication. If you do not know what I am talking about yet, I do not mind because that is a good thing. But if you do not know in an hour and a half then I will worry. Next we will talk about the difference between non-attentional and intentional communication. And if you do not know what I'm talking about stay to. And we will talk about how routines are helpful. And how having predictable kinds of environments, kinds of interactions. Whether they are in school or in your home, if you are the parent or the guardian of a child with CHARGE . The bottom line is to help in any individual who has CHARGE  to communicate effectively. The person has to say, I feel like I am safe. So if I have that basic level of safety and trust with the people who are around me chances are I am going to increase my communication skills. That is a thread that I hope you will understand as we spend time together tonight. This is very important to me. I hope it is very important to you. The idea that there are absolutely not a learner with CHARGE syndrome  who does not communicate. And we have to look at this differently. Every Caddo, no matter how young or old, they already communicate. Maybe we do not understand, his or her communication. But that is not on the learner. I hope that you can come along with me on a journey as I try to sell you on this point. If you do not believe it already. This is a quote from the book, Does Lloyd. This is a very interesting one. I think this is a powerful book and I will say Martin does not experience CHARGE but he has  complex communication needs. And this quote sums that all for me. Not having a voice to say I had enough food or the bath water is too hot or to tell someone I love them, was the thing that made me feel most in human. Without a voice I could not control the simplest things. So that is what we are all about tonight and when we get together next month. Trying to get kids a voice. It may not be a speaking voice. It might be a voice with pictures or signing. It might be a voice with a combination of those things together. But we are going to use, boys in a very generic sense. We want to look at ways the way kids communicate. Because of many learners who experience CHARGE syndrome are currently  our nonsymbolic communicators. It is just a different way of communicating. It is not a conventional way. It is not the way most people in our society communicate. It is not typical and it is not usual. When a person is nonsymbolic they do not use language. That the neighborhood or society uses. And this is primarily what we are going to talk about tonight. What is unique to that person? And this is very legitimate. We just have to join the learner and customize learning and try to move those it eccentric if we can. When I say, not being able to speak is not the same as not having anything to say. I think the kids with CHARGE communicate  with us all of the time. With their facial expression, body movement, they talk to us in many ways. To which we are not accustomed to listening to so we have to build our skills. And this may be meaningful to those who work in a school or those who are teachers, paraprofessionals. I also think it might be of interest to the family members. If you have not seen the communication Bill of Rights it is a very important document. I have the website on the next slide. But it is 15 basic rights that every single individual regardless what their disability might be. The individual has the right to communicate. And they are itemized but I will not read them to you because I do not have time to do that. But a lot of times it is a way to engage with folks about communication. Building communication programs for learners who communicate in an unusual or nontypical way. Many people do not know about this Bill of Rights. And like I said if you go to the website, and you do not have to be a member to access this part, this is American speech language and hearing Association. And if you go right here you will see a lot of information about the Bill of Rights. I encourage you to become aware of that. How about that? And so this is my favorite part of what I get to talk about. And I hope at the end of each of the reminders, you do not think that Susan is nuts. Otherwise she gets so excited about simple things. Sometimes I think we miss the simplest things. And we make things more complicated for the learners that we teach and children we are trying to raise with the best quality of life that they can have. We need to remind ourselves about these things so here we go. Everybody communicates. Language, is the speech that I am using. That is just one way. So when you are a partner, a communication partner of a learner with CHARGE , you need to ask backed all of the time. You need to expect, that they are communicating with you. You may not understand it but that is coming. But expect communication. And that you have high expectations. And you were going to get more communication. Observe. Focus. We got to be there. I think family members are more likely in doing a better job. School professionals are working with a lot of different kids at the same time. I have witnessed people, and I have been guilty of this myself, hopefully not lately, but when we are working with a youngster, and we are setting up a tube feeder for a child with CHARGE . And when we are getting that ready we might be having a conversation with a paraprofessional and we look away. We are not plugged in right away to that learner, that we are hooking up to the feeding machine. And I suggest, maybe that is a mistake. We need to be there. When we are working with a kid, who has complex communication needs, regardless if we are teaching a lesson or communicating or not. But when we are hooking up a kid to be fed, we have to be attuned to what that kid is doing. As we are lifting up their shirt. As we are helping the child or the young adult, to lift up the shirt and connect the machine. That child might be making a facial expression. Maybe there is something that is hurting. Maybe they are excited because they are hungry. The child is communicating to us through their body. If we are looking away, let's say I said how did that lesson go, we are going to miss the signals that the learner is going to be giving us. So do not do that. Plug-in. Focus and be there in the moment. Challenging behavior. We have to acknowledge that behavior is communication. No matter how challenging. To us, they are communicating something. They are communicating boredom or frustration or fear. Who else knows what they are communicating? They are communicating even with what people call, problem behavior. So we need to in my opinion, expect that behavior is communication. So our challenge is that we are going to organizing it. We need to organize the behavior that the kid gives us. And turn it into a system of communication. I do believe that communication is a skill. And it is a sensorimotor experience and it can be very different for the learner who has CHARGE . Communication is both to a varying degree. So those are the basic [ Indiscernible] and how those impact communication is it really important and we need to be consonant of that. With kids who are early communicators that are using a unique any to themselves. They are doing unusual things to try to communicate with us. Because they do not have a conventional means. The way they are going to let you know about their memories of some, is going to incorporate movement and or tactile aspects. If you have taken a vacation and you went to an amusement park and there was something that the ride showed to ride. That child might reproduce the movement about that right. Or maybe the child went to the beach and they had their feet in the waves. She may be trying to kick her feet. And so it could include the movement or the tactile of that memory. Labels. All my goodness labels that we use can be confusing. And it can be very confusing as an adult, if we do not get our act together. When I moved to North Carolina, this struck me as a person who has fairly good communication skills, people would ask me if I wanted something to drink. I would say I won a Diet Coke. And they would say you want a Coke? And I would say, I want a diet coke. And in North Carolina every drink is considered a Coke. So you may say soda pop. We have to get our act together. I am going to call this a glass or should we call it a cup? What are we going to call it? We have to get our act together. We have to read teasingly call people and things by the same name. I worked with a youngster, who was in a very early stage of communication. She had no symbolic communication and no conventional communication. And the people on her team called her by eight different names. She did not know that those eight different names referred to her. When a child does not have a well developed communication we have to always think about that. And this is especially true for kids with CHARGE . Because of their sensory losses and their unique is on how and what they hear. The way the learner receives information might be very different from the way she sends or expresses information. One young man who has been in several research studies that I have done now, he receives his communication through manual sign. They will sign to him. He does not sign. He expresses his information through pictures or through an iPad, or an application called Touch Pad. This is what he uses to send information but he gets information through signing. So expression and reception is totally different. If we have a PT or OT, you are a very important partner when you are trying to plan communication for a person with CHARGE . We know that many people who have CHARGE will have issues , they may not have head or trying control. So we need to make sure their body is in proper position if we are going to do our best job to communicate. To facilitate their communication growth and development. If a kid is floppy, one they do not feel safe and they do not know what is happening to their body. They are working so hard trying to hold up their head. They cannot put energy into ways of learning to communicate. This is so important. You have to make maximum use of whatever skills the kid has. So we are going to grab it and use it. Whatever hearing they might have, we are going to grab it and we are going to incorporate it. Motor and tactile skills. We are going to try to maximize that. And build that in a playful way. We are not just going to randomly, throw in vision, touch and movement. We have to be consistent. And we will talk about this even more in the next webinar. But you have to maximize. We are going to teach multiple ways to communicate. My favorite example and people do grown when I say this in person. If a learner has a Go Talk or a device, it is not going to work in a swimming poll or a bathtub. If you have a child with a hearing aid the batteries will die. Many times a device will break. And it can take up to eight weeks to get fixed. We have to be able to communicate and that is our responsibility. You may ask, why is this in the color of orange? This is my favorite one. We need to engage in activities with the learners with CHARGE . We need to refrain from doing things for them. And that is tough. If you are a mama or a daddy or if your kid is struggling you want to help and you want to make it easier. You do not want your kid to scramble. We do the work that we do because we want to make life easier. We do not want to see them struggle. But if we continue to do things for them, we are not helping them learn to be independent as possibly as they can. We need to engage with them. We do part, they do a part. We need to engage with them, and not do for them. Wait. We need to wait. When we ask a child or a young adult to do something it might feel like we are waiting for an eternity. I will not waste our time because time is precious this evening. Think about this on your own or ask your spouse or a friend a question. Or if they ask you a question do not answer for 22nd, they might interrupt you and say did you hear me? So 20 seconds is like an eternity. But this is not unusual for a kid who has a complex communication issues. The young man that I was talking about his average response time is 28 seconds. And it is hard to wait but we do have to wait. Body language is a two-way street. This is something that I do not think we often think about. We as parents and service providers we read the kids body language I will tell you folks that they read ours too, and if you are rolling their eyes or if you are very frustrated. Let's say that you got a flat tire on the way to work. The kid will sense that. They sense that in our town and facial expression. And the way we sign. If we are signing in a typical way or in an angry way. They will pick up on that. They may not be able to label it but they will get it. And we have to be aware. Just as we are reading the kids body language they are going to be reading ours. Whatever it is, that we are trying to teach we have to model it. If we are trying to teach sign, we have to sign. If we are going to try to teach them using pictures we have to use pictures. We need to model what we are trying to use to help them learn. There is a lot of push in the schools, and I think it is good, accountability. We need to engage all learners with literacy. And I would suggest to you, I think teaching communication skills does provide that foundation. And in my opinion, reading is just communication written down. Reading is just signs written by. Reading is just speech written down. So we are reaching our literacy goals when we are teaching basic communication skills. I think these last few are very important especially for those who might be working with young adults or a teenager. Who at the age of 17 do not have an organized set of communications. Today affects tomorrow but it is not predicted. Just because you are not where you want to be with your child's communication right now it does not mean it can not change tomorrow. Yes today affects that but we cannot predict what will happen. We need to have an optimistic attitude. And that will affect communication growth. Because it is never too late to start. It does not matter if you are hearing some of these things the first time, and if you are building a very elementary communication system. You might say my child was 14 or 19 I do not care. It is never too late to start. There is more ways in which we can communicate and help them learn. Nothing is free. And you might think, this is a very important. And yes it is. We need to expect and require some kind of signal for things they want. I have been in preschools, and the little kids are sitting around the snack table and the teacher or the peer, they will pour juice in a glass. And they will give them fish crackers. And I want to say, why did you do that? They kids did not have to earn anything to get this much juice or crackers. I wanted them to give the cat a little juice and if they wanted more they have to do something. Sometimes they will pick up a cup and throw it across the room. I am not saying that it is going to stay that way. But maybe they will make a sound or strike out and now you can shape and say, I want you to say, I want more. You must require that they give you a signal, even if it is looking down at the napkin and looking back up at you. That is a start you need a signal and remember nothing is free. Nothing is free in our lives. They need to show it. And when they show it, that is where we can shape their system of communication. So how do we lay this foundation? Here we go. Many kids with CHARGE , will be nonsymbolic in their communication for a whole lot longer than kids who are typically developing. A kid with CHARGE my  remain nonsymbolic their entire life and that is okay. It is our job to organize their communication. Sometimes it is only until they're 12 years old. And some kids will bridge to symbols or speech or side even when they're six years old. Kids who are typically developing bridge symbols by the time they are 18 months old. Those who have CHARGE might be longer than that . Because they have such a complicated health issues. They have so many surgeries are so much hospitalization. And they do not develop in a typical way and that is okay. It is important for us as people who work with kids you have CHARGE to recognize , kids with CHARGE  will very often demonstrate different levels of skills with people they know and people they do not know. I think that is true of all children to be honest. The partner needs to read that child's behavior better. An example that I often given I was visiting a family in their home. And this kid walked up to the TV and started to pound on the side of the TV. And I tried to think, what is that? And nobody missed a beat, they kids little brother grabbed the remote control. It was a signal that said, I do not want to watch this show. Change the channel for me. Familiar partners will get that. But when I was a guest in the home I did not have a clue what that child was saying. So familiar and unfamiliar partners will get different [ Indiscernible] and the same for familiar and unfamiliar environments. I am sure you see where children behave differently in a very unfamiliar environment. The levels that we are going to talk about in a few minutes, they do not have clear or distinct boundaries. I will talk about the three main levels but it is not like bound by senses where the kid is only in one stage oral level or another. It does not happen that way with communication. It is the level of which the majority of their care current communication fall. We are going to examine two primary aspects of the foundation of communication development. The first one is symbolization. And we will talk about it now. In about 15 minutes we will talk about the second aspect which is [ Indiscernible]. And these are the primary categories for communication development. We are going to start with symbolization. Defined what is a symbol? It is one thing that will stand for another thing. It could be a written word. It could be the furry thing that means a cat. It could be the side for cat. One thing stands for another thing. You may hear, a school team talk about referent. This is the thing that is representative. The referent is the real live kitty cat. And representation is what you used to represent the real life kitty cat. When we talk about the development of symbolization ability, moving into a more conventional way of representing the reference in the word. And we have lots of authors. As you read articles or professional journals, different Arthur's and researchers will talk about different numbers of stages. This is a popular [ Indiscernible]. They do talk about seven levels. Researchers out of the University of Kansas talk about [ Indiscernible] levels. The number of levels really does not matter I think. I subscribe to keep it simple mentality. I simply talk about three. Kids who are primarily nonsymbolic in other words they do not understand being standing for something else. They do not get that yet. You have the very concrete symbolic which is the transitional stage. And then you have kids who are fully abstract symbolic like you and I who understand the spoken and written word. And we are going to break down each three. And each of those three levels, nonsymbolic, transitional and symbolic. I challenge you to think about different modes or forms of communication. And those would be vocal things. In other words making sounds. That is either crying or screaming or making words. Anything you do with your voice box, that is one form of communication. The second major category, communication at each level, nonsymbolic, traditional and symbolic and another form of communication is called unaided. It simply means you do not need any staff. Pointing or signing. Gesturing. Anything that the learner does with her body. And only her body. To communicate. If it is moving or putting her head towards something. Anything that just involves her body and no other stuff. This is called unaided communication. The definition of aid it means it involves stuff. It could be another person. Where the child is pulling on their arm or their pant leg. Or picking up the phone or grabbing a toy. It involves stuff. We need to think. You'll also encounter a whole bunch of different words. These are a few words that you will encounter in the first stage. Prelinguistic or non-linguistic. I say nonsymbolic. It does not mean that I'm right and everybody is wrong. It just means that is my choice and the reason why I choose this, I am a little uncomfortable, with the words that say prelinguistic. Because it seems to me that it says, it is pre-symbolic and it is not good enough. Or pre-symbolic and that symbolic is definitely going to follow. And I do not believe any one of these things are is through. -- true. I know that some are going to be non-symbolic all of their lives. Do we hope for more, absolutely. If they do not get there, that is okay. The four terms on the screen right now are interchangeable. I just go with the last one. So what do I need? When a learner is communicating nonsymbolic late, the signals, the way she communicates is very idiosyncratic. It is unique to her. Just like the kid who pounded on the side of the TV is saying, please change the channel now. It could be something like I have to go to the bathroom. What ever your kid will do that is unique. That is the way they communicate. For communication interaction to be successful with those kids, you as a partner in that interaction, you have to make it work. You have to read that behavior correctly. You have to understand, that simple eyebrow raise or the increase in muscle tone or a faster rate of respiration. If the kid is breathing quickly because they are scared. You will have to read this correctly and interpret it correctly. This is going to help you. When you are in an unfamiliar environment, the first time you take them to a new doctor and the respiration rate is going up. It is like, this is a new environment and she now is anxious. I am going to interpret this as, I am scared mom, tell me I am okay or get me out of here. But you can comfort her, we are going to make a plan, but you can use that to interpret the behavior and communicate to your child, I understood what you just did. I understood that you started breathing that way. And the child may not do this consciously that it just happened. You can say I understood you. I get it. Examples, crying, bought up [ Indiscernible] and acting on people like grabbing people or grabbing things. Making unusual sounds. All of those are examples. How do you begin to take all of that stuff and organize it and teach it? What I suggest to you, and this is a preview on the next webinar. Just watch the kid. And make notes. When they are at free time or at home. If they want to pull you somewhere, follow their lead. And if you see signals that might potentially, and the big word is potentially, communicate, try to embellish those things because it is so important. People who do not understand symbolic communication might say that is really weird. I am going to directly teach and build from that nonsymbolic behavior. That is how we began. So let's look at the second stage. And the second stage are the things that the kid can do, the signal or behavior. They begin to look more conventional. For the TV example. Instead of beating on the side of the TV maybe the learner or the child is all about getting the remote. They could be batting at the remote. Or maybe it is something that is unaided. Maybe they kid is trying to grab at something. Maybe he cannot reach it. At home you might keep all of the [ Indiscernible] up in the cabinet so she cannot reach. But you will get a better idea, with that gesture, is more conventional big as it looks more like the meaning she is trying to communicate. When you see that thing happen, you are conventional rising the learners communication skills. The partner is still important. But not as important. Because most people who might witness a child batting at the remote or reaching or yelling at the direction where the snacks are kept, most people would get that. But with unfamiliar partners they may not have a clue about the nonsymbolic behavior. Context is still important but it is not as important as it was at the very beginning of the stage. And so this is where communication development program, where you might start to use things that Sherry Roland wrote about symbols out of Texas. Those who have a visual impairment might use textual symbols. Or objects. And we are going to talk about this in the next webinar. Where you are starting to make things more concrete, three-dimensional, not pictures and not photographs, but real stuff that you can handle and manipulate. And you can start to begin to use those forms to exchange information with the learner. And so those are examples that I put down here. Photographs are a little sketchy to me. Many people think the child will respond to a photograph of themselves. But I the photograph is exceptional limited use. But with some kids they might respond to a picture of themselves in the middle stage so that is why I put it on here. The final stage, symbolic and we will not spend a lot of time on. But I just want to bring full-circle. This is how you communicate. This is how I am communicating to you tonight. Conventional expressions. We need to remember, all of us need to be reminded if we work in school, culture is important. Language and culture are interchangeable. We need to [ Indiscernible] cultural expression. It is primary language which is very important, what is traditional and what is acceptable. Partners become less important. Context is really not important. Right now if I said to you, what did you do last year on your birthday? You could tell me. You do not have to be in the moment on your birthday to remember that. Any partner could say, you know, think about the floor of your bedroom right now. What is on the floor in your bedroom and you can answer that to any of your partners. So we want to move there communication development to symbolic communication. Whether it is signed, braille or on and on. So there is a chart. I made this chart. It scares me a little bit. The second line really scares me a little bit. Because, those months are from typical development. I put them there because if I do not give people some ideas on the stages of communication people are not comfortable. They are there but do not get hung up on the numbers. I hope this is helpful if you choose to go back and look at this. Context is critical. And it becomes less critical for only certain references and by the time you become symbolic it does not matter. But with your partner it is so crucial for non-compiled nonsymbolic communication. So pay a more attention to what I have included. That was a really quick view. We are going to do the same thing now, about development of intentionality. Intentionality. Once again, we need to start with the definition. And I hope this does not clash with what your definition might be. I did find cumulative intentionality on deliberate pursuit of a goal as well as the means to obtain that goal. In order for something that the learner does, communicating intentional, it has to be both. There is a difference between behavior and what the learner intentionally engages in. Intentional behavior versus intentional communication. I will give you an example. When behavior is community of, it is done for the purpose of having an impact on another person. Not just other things. Not toys. Not pieces of furniture. When things are intentionally community of, is the purpose of impacting another person. To get them to do something or not to do something. It has to involve another person. Communication by definition, is the exchange of information between two or more beings. So you have to involve another person. One example and I will start with an example, that I think several of you have experienced. Some kids with CHARGE , they do this out of boredom but sometimes we do not know why. I might be banging my head on the wall. So I am banging my head. That is intentionally done, it is defined as intentional behavior. I know what I am doing I am banging my head on the wall. Because I get some kind of jolly out of it. Maybe I see stars or I see light or maybe it makes me feel good. I am getting something so I'm going to keep doing it. That is only intentional behavior. Now let's switch it up. I am switching, I am banging my head on the wall because I know from experience, if I being this wall make it will come over and talk to me. A learner might not have that language to voice that. But again this is cause and effect. I am baking -- baking my head on the wall now Makin is going to come over and talk to me. I am hitting my head because I want someone to pay attention to me. I am trying to interact with me. When I intend to act on a person, that behavior is intentionally communicated. I hope that makes sense. If it does not you can hit me up during our questions. And once again, some people say there are seven and some people say there are 12. We have all of these numbers. I want to keep it simple. I talk about three. I talk about behavior that is non-intentional. I talk about behavior, signals, things that kids do that are not intentional. Then I will talk about the trends additional stage. Where the behavior itself is intentional but it is not one quite teary at. It is not intentionally communicated. And we talk about full road intentionality. When behavior is both intentional and communicative so it meets both criteria to [ Indiscernible]. I tried to connect the symbolization stages here. And so here we go. Once again these are synonymous in the literature. I just do not like the pre thing . To me it is not good enough. If a learner no matter what age is having me there best, that is good enough. We are always going to strive for more. But the way the child communicates does deserve respect and it is good enough. I also believe if we say pre-intentional, we are waiting for them to become intentional and we [ Indiscernible]. So let's go through the stages. Nonintentional. The learner herself is not aware of either your criteria or they are not deliberately pursuing a goal and they are not aware of the means to obtain that goal. She does not begin to know in any conventional way to let you know that she is hungry. Maybe she is in pain or maybe she is having a good time. She does not know how to let you know what she is feeling or experiencing. So the partner, remember that partner is the key, for nonsymbolic and nonintentional. You as the partner have to interpret the learner's behavior or whatever she does, it could be facial expression or body movement whatever the kid does. You have to interpret those things as if they were intentional. You have to describe intentionality to them. Are you going to get this right all of the time? No. But we have to guess and we have to try. We have to use context and we have to guess with our best knowledge that we have. So what does this look like? Expressively in a nonintentional stage, the unique is only for me. Their neurologic system, and the aspects of their anatomy really do control when they are awake or when they are sleep. You try to wake your child up when there is something so exciting, but we cannot wake them up. Her system is sang, we are going to sleep now and you cannot alter that. It is very context driven. At this stage if the partner does what they are supposed to do, it can empower the communication they have. If you are in an unfamiliar environment the kid might be scared. And their heart rate is beating real fast and you try to comfort them. Parents do this naturally. If I am doing something comfortably, and if I do with the same way every time, the kid is going to learn, something I do make something really cool happened from mom or dad or for my teacher and I like it. I really do not know what it is about but I am learning about being in our empowered. At this stage the kid does not understand the words that you say. It is very discouraging to some people when I say that. If a kid is nonsymbolic and nonintentional the words that you say do not have any meaning. I am not trying to ever encourage not to use any to or to stop signing. That is not what I need. What I am suggesting is that you consider, choose your words carefully. And use what is called telegraphic or choose your signs carefully or your keywords carefully. Because what kids understand at this stage of communication development. They understand your tone of voice. And they understand touch and physical content. My favorite example, I say do not get verbal diarrhea. I have seen many teachers and I probably did this when I first started teaching. And we say, you have to have your diaper changed, and we are going to do this. Now we are going to change her diaper. There are too many words. Sometimes we do not know when one sentence stops and another begins. It sounds like a foreign language. Sometimes I cannot tell where the sentence starts. And that is what the kid understands or hears. When they are at this nonsymbolic and nonintentional development. So you want to say, Johnny it is time to change. Ready? 1,23,up and 1,2,3 down. Do you see the difference? And you use the main point. Use touch. You might use an exaggerated tone. So let's look at the middle stage. Transitional intentionality the learner is deliberately engaging in behavior. I am going to beat on this TV on purpose. I am beating on this drop because I like that vibration. I am doing this on purpose but I do not have a mental plan for getting something that I want. So the partner, and again, this is the middle stage. This is where the partner is important. You use the environment to help you. You are making your best parental gas. -- guess.
>> If it is a challenging behavior, and the behavior stops and the child smiles. And now you say, I guessed right so I need to write this down. You are going to be more right than you are going to be wrong because you know your child. But sometimes you might be wrong. Especially when their behavior goes off the chart because then you will definitely know that you guessed wrong. Intentionality starts to happen. Kids begin to purposely communicate. In a very show [ Indiscernible]. Let's say your child has a special relationship with grandpa. And when they are with grandpa and they are seeing a special song, and you can see a high preference activity. This is going to start purposeful communication. Context is important but it is becoming less so. And at this stage some of those words that you said in that telegraphic speech or some of the signs or the keywords, they are starting to be understood. That is why you cannot be silent. You have to present the spoken word. Or you have to present to sign. So the child begins up a repertoire of words or signs. And after it has been repeated and repeated, the child is going to begin to comprehend. Fully intentional and again this is where you are. And hopefully this is where IM. The learner is deliberately pursuing a goal. And they have a mental plan or a way to get that. With the purpose of engaging with another person. I am doing something on purpose. To get some kind of response. A reaction or [ Indiscernible] out of another person. That is the definition of true communication. The learner is going to use his behavior to expect something else from someone else. And it still might be unique to him or her. Expecting another person, for [ Indiscernible] behavior and we just need to work on the form. Expressively, we get a true symbolic expression. Kids use what pathologist called, true words. If I ask you, why did you do on your last birthday it is free a context? Reception, kids can comprehend words whether it is a spoken word or manual signed. They can see what they actually produce. So I try to summarize this part with another chart. And I will say the same thing about this, I am still nervous about the numbers. But if I do not give people rough numbers they get very uncomfortable or anxious. So I put numbers on there. I hope you pay more attention to the evolution of behavior and when it is not intentional. Two when the behavior becomes intentional first, and it is not intentionally communicated yet. And the fully intentional stage, the behavior or signal or action are intentionally communicated. This is a lot of information on the chart. And hopefully this is the information that we went over together. As a preview, and so come back next time, I do have a few more comments before I take your questions. I hope what you take from this time or this evening, I really want you to try hard. Each learner with CHARGE meet her  where she is. It does not matter where she is. Wherever she is that is your starting point to build a communication system. If you have behavior or a symbol, go.. With your team, you are going to learn with the family. You will consistently respond to each behavior, predictably, consistently, and you are making the kid feel safe. And this is how you are going to respond and how you can anticipate what is going to happen. We have specific strategies for number two and we will go over that in the next webinar. We want to move the kid in the direction of being more symbolic or more conventional. We want to move there communication in the direction of intentional. That is what we are all about. So how do we do it? Kids with CHARGE we need  to learn how they are going to receive information in every activity. They need us to plan what we expect them to do in every single activity. And we really need to look at the environment. We need to look at the physical environment, visual environment, auditory environment, because context, environmental context is going to support communication development. And the goal is to establish a equal partnership. You have heard me say so many things about the partner. And we are going to try to build a communication program so that the kid with CHARGE can be equal partners  in communication. They'll mail your people and environments are likely to facilitate more effective communication. Because the kid is not nervous or stressed. They are going to be more comfortable and say I need a break. As we know many kids with CHARGE , there stand my is an issue. So you are going to see growth in familiar contexts first. And with familiar people first. Have a positive attitude. Expect that they will communicate with you. And plug into them. Observed, and focus on what they do. And so that is me. This is my phone number. This is my email. I said I would give you 15 minutes to ask questions. So thank you for your attention. What do you have for me, Megan?
>> Thank you Susan. I want to thank you so much for all of the amazing information. I was looking at the attendee numbers and it just kept going up. So clearly everybody wants to hear what you have to say. 
>> We have a question. My son does not keep his cohclear implant even after one and a half years of having the implant. We have had many changes in the settings with his audiologist but it does not seem to help. Is this common with kids with CHARGE syndrome ? How do we make cam keep his implant?
>> I have known kids with CHARGE  whose family have opted for not requiring the kids to where the implant at home. And the school requires them to where the implant at school. The young man in my example wears his implant 100% at school but rarely at home. You might say is this ideal? I would say probably not. This man is now 20 years old, he did start responding to sounds and it almost took six years before he responded to sound. I witnessed it and I was so blessed that I was in his elementary school the first day, when I paraprofessional called his name when he was running down the hall, and he turned around and looked at her but he kept running. There is a correlation the hiring the wearing time that quickly their progression to processing sound and the higher the magnitude but do not give up. I have seen kids change their wearing patterns much longer than one and a half years. Some things you might want to try, different kinds of headbands or different headgear. And sometimes different kinds of to pay tape -- to pay. And this will encourage him to keep bad on. You do not want to do that if the sound is too loud. You would have to work with the audiologist on that because I cannot answer that. There are kids with the programming or the re-programming of the implant is critical and you have to look for their facial tics. And kids have different sensitivity and do not give up. I think setting your goal a little lower, maybe your goal having your child where they devised every day is not [ Indiscernible]. Maybe you can say let's increase it five minutes, three times a day. Versus wearing it all day long. I would talk with the team and see, could there be an aversion to sound? Sound is different through an implant. I am sorry but that is the best that I can do. 
>> Suzanne, thank you so much for that.
>> Our son will remove his implant, to communicate. 
>> I need to know more about your son. I have seen that in child before. Could you are his Tim reacted Dash to -- could you are his team be reacting negatively? You know how important it is to be warned? One thing that I suggest, try not to react. I think the idea of response redirection is very appropriate in terms of specifically what that might be, but until I know more about your child's preferences or interest, give him a dramatic way to say, this really sucks. He might be doing something he thinks you really do not like but he is excited about it. Or maybe he is making MS of something. What you are trying to do at first, is to create the alternative to knocking the implant off. And if you want to write me with more information on your son I will try to give you more information. I need to know what he likes and what he does not like and what makes him unhappy.
>> We have several people, who want you to speak at the CHARGE conference this summer so please do what . do that.
>> We have another question, my adult daughter and typing with those who have typed with her, it seems it is difficult to support her in typing with someone she did not originally type with. However she appears more expressive with typing. I wonder how to encourage typing with other individuals?
>> It is okay if your daughter is communicating with people, or different partners using different modes. That is really okay. Because she is at least communicating. I do not sense her shutting down. Maybe you do not want to promote or encourage her to communicate in different ways. The fact that she is communicating I say, good. But what I would try to do, and I do not know if it would be successful, but what I would try to do is start to [ Indiscernible] or try to get her to abandon how she communicates with the person she originally typed with. Maybe she should side with that person. Or maybe she could sign, I like milk. Take a break and go to the keyboard and type in milk. Or maybe you can type in mil and she can type in the k. And next time it could be milk and cookies or something. Instead of trying to convert one form of communication to another alternative form, you rather integrated. Maybe she can type in a keyword. And maybe if she gets more feedback with that partner she might start typing with that person. Do you think that might make sense Wendy?
>> She wrote, thank you so much. 
>> I think we have one time for one more question. You may type it into the chat pod or you may ask a question over the telephone by pressing star six. 
>> There is a question firm Tyler, how would we react with some [ Indiscernible] behavior?
>> I need more information because I'm not sure what you are saying. 
>> I do see that Tyler is tight keep typing.
>> It really is hard sometimes it you have a child in your class, or a family member and you feel all you get is challenging behavior. Maybe it is aggressive. But you have to assign a communicative [ Indiscernible] to that. And I get that. And is [ Indiscernible]. It is not that you give every aggressive behavior in meaning, but there has to be some other overt thing that your child is doing. Then you can start and shape. You can not change them from this challenging behavior with a controlled jester. It might be that you start with an arm that is swinging. And you block the swaying and you rotate that hand. And you block it. And you are doing what we call managing the behavior. But you are doing it with the eye toward getting it to be more like adjuster.
>> I want to go back to Britney, kids know, they are so smart even if they do not communicate in a conventional way they are so smart. If they get a reaction out of us, they are going to keep repeating what ever it is. It could be knocking the implant off. And if you react you just dug your own grave. But I know and I understand it is easier for me to sit here in my office in Missouri and say do not react. Then it is for you to not react. But honest to goodness one of the best things that you can do for yourself, if you want to shift this behavior into communication, do not react. Because the kids pick that up from us. Remember body language is a two-way street. They will see is react. And that is reinforcement. And that makes them repeat that challenge the [ Indiscernible]. Do not just walk away when the kid is hurting themselves or hurting them and Dash to or hurting somebody. You cannot have an intervention program, 24 hours a day. You cannot do it. And sometimes you have to walk away or close your eyes. Because you cannot react. And if you react you are going to reinforce the behavior that you do not want. 
>> We do have a few more questions but we are out of time. I suggest that you write down Susan's email address or telephone number that is up on the slide. I know that she will respond to you and be very helpful to you.
>> I will also say there is going to be a second webinar March 22 where she will continue to have more information for us that we can incorporate [ Indiscernible] for the second webinar. So on by half of the CHARGE foundation , I really want to thank you Susan for being here tonight. This presentation has been very beneficial, to help us understand communicating with individuals with CHARGE . I want to thank [ Indiscernible] that she ensure that technology did work very well tonight. And your input is very important to the foundation. So you guys will receive an email tomorrow, in your inbox, because you registered for this training, if you could take a few minutes to respond to the survey, we sincerely appreciate it. Because your input is going to help us with our next webinar in our foundation, to strive for future webinars. I do have a survey monkey link in the chat feature right now. I hope you will join us on part two. This is laying down the foundation for communication and practical strategies and Susan will be back. One last thank you to Susan, and I hope you have a wonderful evening and thank you so much for supporting the CHARGE foundation . 
>> Thank you so much for all of your time. I appreciate you all. Good night.
>> [ ] Event concluded [ event concluded ]