CHARGE Syndrome Foundation



NATIONAL CENTER ON DEAF-BLINDNESSCHARGE WEBINAR, STRUCTURE AT HOME: LET'S BUILD IT!APRIL 22, 2020CAPTIONING PROVIDED BY:CAPTION ACCESS LLCsupport@* * * * *This transcript is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.****> ROBBIN BULL: Sounds like we are on with captioning, so I am going to go ahead and get us started. For those that are having trouble with audio, there's a phone number at the top of the chat pod. You can scroll up to the top of the chat pod and get that phone number. You will need to dial in to get that audio, and hopefully you are seeing that in the captioning. I'm going to do the introductions now. This is Robbin Bull with National Center on Deaf-Blindness. I want to begin by welcoming everybody to the Structure at Home: Let's Build It! webinar for the CHARGE Syndrome Foundation. Thank you very much for being here. I'm going to go through some housekeeping items before I headed over to Megan Cote, who will be introducing today's presenters. And I'm sorry, I believe now it's actually Minnie Lambert who is going to be doing the introduction. Minnie will take over in just a moment. But before we begin, I want to just mention that we have all phone lines muted to reduce the background noise. We do ask that you keep your phone lines on mute.We do have the question answer session that will occur at the end of the presentation. However, you can write your questions and responses into the chat pod at any time during the presentation. It will be monitored throughout the presentation, and questions and answers will be monitored throughout. I do want to let you know that this webinar will be recorded and it will be archived on the website, the CHARGE Syndrome Foundation website. That will be posted in the next couple of days. We do want to remind you to be mindful of your comments that are placed in the chat pod, as it will be recorded, as well and posted with the recording. So just don't post any sensitive information that you don't want to have recorded. I'm going to get the recording started now. Then, Minnie, you can take over.All right, Minnie?>> MINNIE LAMBERT: Can you hear me now? I was steady talking. Just as Robbin said, we want to welcome you to the CHARGE Syndrome Foundation webinar entitled Structure at Home: Let's Build It! My name is Minnie Lambert, and I'm a board member with the CHARGE Syndrome Foundation and we are thrilled to have you all joining us tonight. At as a complete honor for me to be able to introduce our two presenters tonight, two of my most favorite people, Kate Beals and Sharon Stelzer. We are thrilled that they're willing to share their expertise and knowledge with us tonight. As you know, the CHARGE Syndrome Foundation is a not for profit organization that provides support to individuals with CHARGE syndrome and their families. Our vision is a better world for people with CHARGE syndrome. If you like what you see tonight and you believe in the work that the Foundation does on behalf of individuals with CHARGE syndrome and their families is important, please consider becoming a member of the Foundation or making a donation to our website. Kate and Sharon will provide their presentation, then there will be time for questions at the end. If you have a question while they are presenting, please feel free to write in the chat pod at the right-hand side of your screen and we will make sure to cover it, as many as we can, when time permits, as they have, after they have shared. Thank you to everyone, again, for joining us. And with that, I pass it off to Sharon. Enjoy, everybody.>> SHARON STELZER: Thank you, Minnie. Good evening everyone, I hope you are all being safe and healthy in your homes. We are here too, Kate and I, in our houses. I am outside of Boston with my two dogs, so they are right here listening to every word I'm saying. So we wanted to welcome everybody, and let's get started.We were thinking about, "Who needs structure?" There's been tons of things on Facebook and Instagram about schedules being posted about structure. And when Kate and I were thinking, we were thinking who really needs structure? If we really think about it, everyone needs structure. Otherwise, your whole life would be chaos. I know sometimes we all think about our lives, we think oh, today has just been chaos and there's no structure in my house. There's no structure with the kids. School and my work provided the structure. But if we really break down thinking about what structure is -- and that's what we hope to do tonight, Kate and I -- to think about what is the crux of structure and why is structure so important? I'm a teacher, so I always like to think about the why we do things. What does structure do for us?For us and for our students that Kate and I teach, and for your children, we think about what structure does. Structure and schedules, they develop concepts. You are thinking well, what does that mean? Well, it could be something as simple as a concept of we're getting dressed in the morning and we're putting on your shirt, and you're giving your child a choice, do you want to wear the blue or the red shirt? That's a concept, that's a color concept. The concept of putting something on. Can you put your shoes on? On and off, things that build the structure and routine.We think about vocabulary, whether you realize it or not, you are always teaching. Parents are children's first teacher. They start with, from little babies, even though your child is not talking as a baby, you're still beginning the foundations of language and vocabulary, whether you're doing it in sign language, whether you're doing it with your voice, whether you are holding up the shoes and you're showing your child the shoes when they're getting dressed, you're developing the concept and you're developing vocabulary. And, you're really practicing that over and over again, whether you realize it or not.What else does structure do for us? Structure and schedules and routines, they help us build anticipatory skills. You are thinking, what does that really mean? It's really simple, first this, then that. What's going to happen. So if you think about children who might be having a birthday coming up, you're talking about that. You're building that up. You're anticipating that their birthday will be coming up. That's what we are doing, but we think about schedules and routines. We're really developing those anticipatory skills to further broaden our children's horizons, to really think about what's going to happen next, and to have them think about the schedule. Without really talking about it in a formal way, or maybe in a formal way, you say first, first what you have to do is, you have to go to your Zoom meeting with your teacher or you have to do this lesson, because we're all at home and we are in new territory for all of us. It's new territory for teachers. It's new territory for parents and it's new territory for our children. We haven't learned, we didn't know how to do this before. This is brand-new for all of us. So thinking about that. So before you can go outside and play in the backyard or before you can have a snack, you're going to have to do X, Y or Z. And, that is all anticipatory skills.What does our schedule or our routine do? It also denotes a period of time. Many of the students that I work with do not tell time. But they know that things happen in an order, and that order is denoting time. When we are in school, our classes work in half hour or hour time blocks. I know that maybe they go to the vocational room for an hour and then the next thing after that that they do is they go to lunch. So they're learning that time without really teaching the concept of one hour. They're learning that something happens in a block of time. I hope that makes sense, so far?So what else does structure or routine or schedule do? This is my favorite thing. They promote conversations. And if you know me, I like to talk and I like to talk a lot. We can have conversations in many, many different ways. So if, in the morning, you go in and your child is asleep and you try to wake them up, and you're trying to get them to wake up, you pulled the covers down and they take the covers and put the covers over their head. You're having a conversation, whether you know it or not. There's no words in your conversation, but there's a back-and-forth dialogue. So you pulled the covers down and you say you have to get up. The child takes the covers and pulls it back up over their face. You're having this conversation of no, I don't want to get up. I want more bed. And you're beginning the conversation. And, that's what our structure and our routine does. So then you can begin to negotiate, if you get up, I made pancakes for breakfast. Or, you get to wear your favorite hat today. Whatever you need to do to promote the conversation, that structure and routine. It helps us to go back to the slide before, developing time, anticipating what's going to happen next, and thinking about vocabulary. Our schedule and our structures also relay information. We relay information so that the child understands what's going to be happening next. Can you imagine, if you got up in the morning and you have no clue, your partner, your husband, your wife, your sister just said to you, "I'm not going to tell you what we are going to do all day. You're just going to have to go with the flow." It would be a little chaotic if you had no information and you don't know what you're going to do. You don't know when you're going to eat, you don't know what you have to wear. Am I supposed to put on a coat or shoes? I know I've been living in my bare feet and slippers, I would have to know, do I have to put my shoes on to go outside? So think about relaying information.Most importantly, it also helps your children develop memory. And, that's really important for learning, and that's really important because we are always having our children work on memory skills. If you can remember the order of things, then you can remember what comes next. It really is building on greater concepts, having a working memory. Think about a time, maybe with your child, for right now, the first few days they were here they would wake up. You would get them ready. And they would go to school, for many of our children. That's not happening. That's their memory, I know I am supposed to go to school. Because they had a good working memory of their routine. Then we get into our conversations again. We have to rethink different kinds of information. So all of these concepts are tied together. That's the teacher in me thinking about all the things you do at home with your children that you really aren't, you might not be aware that you're doing, but you are doing these things. Here we are just talking about language. When we are talking about language, we're thinking about vocabulary, we're thinking about how many words. These are things that teachers think about all the time. If everything is chaotic, if your child has a hearing impairment and there's a lot of background noise, you might want to cut down on the background noise. Maybe their sister is screaming because she can't find her favorite shirt, and you're trying to give your son information. So you have to think about the language and information, what's going on in the environment. Thinking about turn-taking. This is a hard thing, a hard thing for teachers and sometimes a hard thing for parents. Sometimes our students or our children don't take their turn quickly. They need time to take their turn. They need time to process what you're saying. Really, turn-taking is helping our children build conversation skills. It's helping them be social. Turn-taking is part of our social culture.Thinking about what our schedule does, it helps us with organization. So if the child knows what's going to happen next, maybe that's one thing that you don't have to do next, that maybe they start to anticipate what's going to happen. So they start to go to the bathroom to brush their teeth and you don't have to tell them that. It's one less thing you have to do. It's something we really want to teach with organizations [indiscernible] attendance. I talked about time already, thinking about things happen in what order. Things happen for a period of time. If you have a child who can tell time, you can talk about time. I've worked with lots of children and students who, if you said one more minute, you'd better mean you are ready in one more minute because they're timing me, one more minute. We have to really talk about what that means. Sometimes "one more minute" means five more minutes. So thinking about that and thinking about who your children are.Sequencing goes along with timing, things happen in order. We want to use vocabulary, this goes back to our vocabulary, first, then next, later. For some of our children, and some of our students later is a foreign concept. Later is a concept, something we can't use. But maybe next, something that's happening a little more immediate, is something we can do. So thinking about those and then generalizing all of those, these are concepts teachers think about all the time and believe it or not, you guys do do this. So thinking about generalizing so that maybe, see if you get your child up one morning and then the next morning your partner, your husband, your wife, their sister gets them up, do you want to make sure that the routine is the same so they can start to generalize skills with different people. That's an example of generalizing.So we're thinking about, when we think about schedules, they are based on understanding and abilities. They're not based on age. I know when I've been looking on social media and I've seen tons of schedules, I saw one the other day like this is what a four-year-old should be doing, this is what a six-year-old should be doing, this kind of schedule. For our children and our students, we really don't want to think this way. We want to think about what they can understand, what their abilities are, and how we can get them to the next step.So I was reading something recently and it was by Temple Grandin, and she is a woman who has autism, and she was writing a whole little paragraph in Parade magazine about how to help children cope with what is happening in our society right now. And the first line in her little blurb was routine, schedules and figuring out what helps you cope. Then she gives lots of examples with that. I thought oh, man, this is perfect for our webinar, because this is exactly what we're talking about. We're talking about routines and schedules and thinking about what's going to help us all cope. As you're going through this with your families, we're all going through this. Teachers are going through this. I'm going through this. Kate is going through this. Every person is going through how are we going to get through this and how we going to cope with staying home, working remotely, or if you're an essential worker, going to work. Who's going to be home to watch our children? Think of all these many, complex issues that are happening right now.Kate and I are going to be talking about, when we are talking about schedules and we are going to be talking about routine, and really the importance of routine. And we know that children with CHARGE syndrome crave routine and they need to know their schedule. And, how do I know that? Well, I know that because I've worked with many of your children. They ask us. They show us through behavior. So there's a picture on the screen of one boy he's having a little tantrum and we put the caption, "No schedule." On the right, there's a little boy with a big smile on his face, and he has a schedule. He knows what's happening. Schedules help us all figure out what's happening and help us figure out how we are going to cope. We are going to really build our structure and our schedules through routine. And, routines are a series of actions that are regularly followed. So what I loved, when I just looked up the dictionary, it didn't say anything about a clock. It does mention that it's a series of actions. It does not say at 8 o'clock, every single one of you have to wake. Then you have to have breakfast. Then you have to go and take a shower and get dressed. Our routines are going to be individualized. And you're going to build the series of actions that are most important to you, your family and your children. It's not what somebody else thinks. I think at the beginning, there was many things, people were posting schedules. Giving different examples of structure and routine. 8 o'clock wake up, 8:30 AM breakfast. 9 o'clock school work. 10 o'clock exercise or an activity. 11 o'clock art. I think, as we're going through this and we are now on, we finished up on March 13, so we're on our sixth week here in Massachusetts, thinking about, that some of those schedules don't work. I have a friend of mine, she has twins, two-year-old boys. She posted on Facebook yesterday a picture of, she had a beautiful whiteboard with a schedule and her boys had taken markers and they colored all over the schedule and it was posted on the refrigerator and all over the refrigerator was scribbling. She says, "I guess that is my schedule for this week." I thought that is so perfect, Because sometimes, our best intentions just don't happen. Life gets in the way. I wanted to ask you, because I'm a teacher -- and this is hard for me because we are in a webinar and I am like, I need to have some audience participation -- I need you to think about what are you doing now that's working, what would you like to do, what can you realistically do? And then, write down on a piece of paper activities that are important to you and your child. Then we will have a couple people share in the chat afterwards. I'm going to give you just a couple minutes and really think about, give yourself praise for what's working now. And, maybe something that you would like to do that's realistic. If you would just take a couple minutes to do that, I will give you guys a little time. We need wait music. >> KATE BEALS: Raise your hand when you're done. [LAUGHS]>> SHARON STELZER: All right, if a couple people like to share something in their chat, whether it's something you're doing now that's working, to write down an activity that might be important to you and your child that either you're doing now or that you would like to do, that would be great.No one wants to share?April has said that we use chat for her daily schedule. They do a conversation for their daily schedule. Anya is saying that sensory activities. Victoria is saying XL math, speech therapy and Google class two times a week as part of their class and part of their routine. I'm assuming those are all things that are important to you. Katie is saying using object cards on a wall calendar systems and she's had to break down routines more right now than ever before. April has to incorporate sensory every two hours. Remember, for many of our children with CHARGE syndrome, that sensory input is so important. I know Kate is going to talk more about that as part of her routine.>> KATE BEALS: Can I ask a question of April Smith? April, right now you're saying sensory every two hours. Was that typical for your child before this situation of being home from school?He needed breaks.>> SHARON STELZER: He needed breaks before the transition. Minnie says she's had to remember that it's okay that he wants to know more. Because sometimes, our students need to know more. So you're going to have to be building those conversations. Suzanne says that they have a calendar for the week on our son's wall that tells him the time and also what actions or activity or class. For example, he might have a PT Monday at 9:30, ELA from 10 o'clock to 12 o'clock. And then social studies. It's all color-coded, so that works well for them. Jeanette says separate the clothes. I love it, as a teacher, we call that the expanded core curriculum. It's all the chores and things that need to be done at your house, but it's really teaching technique for children who are visually impaired. It came out of the visually impaired world, but it works so great for our children who have CHARGE syndrome and our children who are deaf-blind, using that expanded core curriculum. And then putting the clothes in the drawer. I love that, I just love that kind of thing.I am going to flip to the next slide. I know that many of you didn't share, but that's okay, too. Just think about what's important. Think about for yourself, maybe drinking coffee is really important and you just need to sit by yourself and not talk to anyone until you have had your coffee. Maybe going outside is important. Think about all the things that are important and then we are going to talk about how you can build your structure and you can build your routine. And, I'm going to pass it over to Kate, now.>> KATE BEALS: Thanks, Sharon, and hi, everybody. I think maybe we should start with, and I apologize if I missed this earlier, Sharon, but I think we maybe want to differentiate between a routine and schedule. You talked about the certain actions that are done in the same sequence each time. I think about a routine as the steps involved in a particular activity, and a schedule as a series of routines. Does that make sense?So what you do in the routine is the steps of your, the steps that you take to get ready for bed. But your schedule includes, you know, breakfast and playtime and lunch and school time and dinner and storytime and then getting ready for bed.So the schedule is a series of routines. Like on this slide are just some ideas, this is by no means [indiscernible] you don't have to do all of these things. You might have other things that are important to you and your family. But if you think about your day, kind of divide it up into morning, afternoon and evening, there are some routines that you might do in the morning, some in the afternoon and some in the evening. I put bath and shower at night, people might want bath and shower first thing in the morning. The only thing I know for sure every single day is that I'm going to make coffee in the morning. Absolutely one of the very first things that I do. So, and we're also hearing, when we talk, we are trying to present ideas that some of which would be useful for children any age group. So they are going to be some things more for younger children, some for school age, some for teens and young adults. But then also, as I know from my own child who is 30 but has autism and intellectual disability, there are certain routines that are important for him to be able to perform at the level at which he's capable. So, we take all that into account,. Everybody has different strengths and talents and abilities. These are just some ideas for routines that you might do at different times of the day. So, there we go, I think I've got it.These are some activities in categories. Self-care activities, you know I'm an occupational therapist, so this is important for me. Self-care activities are things like washing your hands, taking a bath or shower, shampoo, brushing teeth, coming and brushing hair, using the bathroom and getting dressed and undressed. Right now, I put WASHING HANDS with capital letters, because it's really important for everybody to be washing hands a lot. We are going to talk more about that particular activity in the little bit. Then there's another category of routines that might be regarded as recreation or leisure activity -- walk, swim, dance, ride the bike, listen to music, games, color/draw, books, arts and crafts. I suspect that, based on the wonderful children and young adults that I've met who have CHARGE syndrome, some of our children's preferred leisure activities might be a little different from what we would choose to be a leisure activity. And in these times of stress -- and this is a very stressful time for everybody, because none of us know when the situation is going to be over -- this is what I believe. I think it's okay to relax little bit about some of those things. My son has, and all of you are parents, you understand how to read your child's behavior better than anybody else can read that behavior. You know when your child is stressed or anxious. With my son, he has certain, made up words or little snippets of songs that he's made up. And, depending on the context, when I'm with him, I can tell if he's using that repetitive phrase or repetitive song because he's looking for attention or, if he's nervous or anxious about something, or if he's superduper excited about something. Right now, all of our kids are going to be feeling a little bit of extra stress. From my perspective, certainly, I feel like I need to relax with that with him and let him just to do some stuff, even though it's a little bit annoying to me. I think that that's the way that he has to express his feelings. That just isn't, he'll say, he'll sing a little song and he'll say, "Mom, is that my nervous song?" I will say, "Yes. Yes, I think it is. Can you tell me why you feel nervous?" I just think we all need to take it easy a little bit on ourselves and take it easy a little bit on our kids. They're going to be showing some signs of anxiety and that might mean an increase of repetitive behaviors. So if your child wants to sit down and draw right angles for their leisure activity, I think that's okay. But getting movement is good.Another area of possible routines is household chores. And by golly, you know, I never put schoolwork on this list. [indiscernible] I never wrote down schoolwork! I'm sorry. So schoolwork is also something that would be important to include in your schedule. But if you can, try to involve children in doing household chores as their age and mobility level and cognitive level where they can, and even if it's just being involved in a few steps. But some things they could be involved in would be the dishes or the table set up. I love laundry for all of the many concepts that you can work on with the laundry task. I trip over my own feet when I try to make my bed, but if you can figure out how to make your bed without tripping, that's a good one, too. But it's hard to take the sheets off of the bed, disassembly is easier than putting things together. So even to have children help remove those sheets from the bed where they're going to go in the laundry, that's great. I think my first job with [indiscernible] was dusting. Anything around meal preparation, even if it's washing produce, put ingredients into a bowl, put in, in and out and how much. Cleaning the mirror in the bathroom. Those are some kinds of activities you could build routines around. Next, we're going to talk about some sample routines. And I really want you to remember these are only samples. Like I said, you are going to choose what's important to you and your family and you can build your routines the way that grandma always did it, if that's what works for you, if you have a tradition that you want to pass on. This is yours. I think Sharon was saying at the beginning, talking about how our kids are not in school right now. These days and the way they flow belong to you and you can do this. You're not a teacher and you're not a therapist. You're a parent. And you showed up here tonight, and that tells me that you care so much. You're already doing everything right, you really are. Be patient with your own self, too. This is not mine, this is not meant to be mine or Sharon's, it's meant to be yours. So we will do some sample routines, and we will talk about one self-care routine, a recreation routine and a household chore routine. Before we go there, I just need a little bit of water. The most important thing is any routine that you decide to develop or have already is that the child must be actively involved. It's very important that the routine is not done to them, but that the child has active participation in performing one or more steps of that routine, regardless of how much assistance they might need.The child has to DO in order to learn. It is DOING that builds pathways in the brain, that builds those neural connections that make it easier to do the next time and the next time and the next time. This is why when we are teaching steps and a routine, we don't use hand over hand, where we put our hand on top of the child's hand and move them through the operation. We don't move them through the function. Rather, we put our hand underneath the child's hand, and allow, and we can guide, but the child has the ability to withdraw if they want to, or to explore together. I like to think about hand-under-hand as exploring together. You want to give some extra time for the child to initiate the action. This is because in newer research of how, about how the brain works, the brain in scans lights up the most, gets the most brain activity, at the planning and the initiation phase off movement. And then, the activity level of the brain decreases, it drops off through the execution of that movement. So the most important thing is for the child to start, for you to feel that their muscles engaging to begin to make the movement. Then, you can build from there. But it's active participation is the only way they're going to learn. If you move them passively through the activity, it's your brain doing the work and not the child's brain doing the work. And we want their brain to do the work so they can learn. That was my little commercial for active participation.This is just an example of a self-care routine for washing your hands. All it basically is is a task analysis. You think of it, and for whatever activity you're going to do, just like about what are the steps that are necessary for this to be done.So to wash hands, you're going to go to the sink. Turn on the water. Get your hands wet. Dispense soap. There might be different ways of dispensing soap or using a bar of soap. Those movements can be different. Rub the soap on your hands for the 20 seconds, at least. If your child loves to count, you can count. If they like to stomp their feet, they can stop a foot 20 times. If you want to sing a song or say a rhyme -- whatever it might be. Or visually watch timer for that length of time. Whatever is helpful to make sure that they're engaging, rubbing the soap around for at least 20 seconds. Then rinse off the soap. Now, this is different from what many people might think is the next. If you're a healthcare provider, you have had training in this. If you're not health care provider, you probably have not had training in this. Right now, during this pandemic, this is super important. After you rinse the soap off in running water, with your wet hands, you're going to get a paper towel and use that paper towel to turn off the faucet. You don't want to touch the faucet with your clean hands, because the second you touch the faucet, you're recontaminated. So you've got to put a barrier between unclean hands and the faucet. So grab paper towel, turn the water off, throw that away. Then, get your dry towel and dry your hands. Again, that's paper towel you throw it away or hang a cloth towel. I'm proud to say, especially now, now that this is so critical, I'm very proud to say that I have taught many, many children with CHARGE syndrome how to wash their hands. I know that not everybody can do each and every one of these steps, and that is okay. Any one of them, you choose, whatever the level of your child's ability is, that's what you go with. And you don't have to stress about making sure that they learn all 12 steps. You don't have to do that. But engage them and try to get them actively involved. Maybe this week they can do one of these steps. Maybe three weeks from now they will be doing two or three of them [sounds like], those are the task analysis for a self-care routine. You would do the same thing for brushing teeth. You would just break it down into individual steps.Then, a sample routine for recreation might be an obstacle course. We want kids to be moving as much as possible, and knowing how much, how significant the need for the foot pressure, proprioceptive input is, especially for kids who have CHARGE syndrome, you want to get as much movement built into their day as you can. I have usually found that kids will love to do some sort of obstacle course. You just use what you have on hand. You can use the coffee table. You can use a bookcase. You can use a chair. Stack of pillows. Anything at all that is available and safe. You decide what the child wants to do at each step and you show them step-by-step or walk through it with them. Maybe you start on a line that you've made with tape. You walk to the first chair and go around at once. You jump to the second object, maybe that's a stack of books. Go around, jump around it two times. Then maybe commando crawl over a big pillow and run back to start. So use lots of different gross motor movements, and movements that will provide proprioceptive input, which our children need. And then we are going to talk about when things don't work.Here is a sample routine about the household chore of doing laundry. I get it, it's just a task analysis. Pick up the hamper. Sort items by colors, by white, put a load in the laundry basket. Carry into the washer. Open the lid. Some kids may be at the point where the step they can do is open the lid. They might be at the point where the thing they can do is close the lid. That's great. They're participating. Then you put the things in, you measure the detergent. That might be something for mom or dad to do or an older sibling, unless they have the ability, then they can do that. But and, again, pouring detergent into washer. Close the lid, choose settings, start, move clean laundry to dryer, remove, fold/hang, put away. You can all read that. But again, it's a task analysis and you choose which step you want your child participate in at the level that they can.Sharon was talking about her friends whose whiteboard schedule was redone into scribble art. Sometimes things don't work out exactly the way that we had planned them. Right? So, it is okay when an activity that you planned doesn't exactly work the way you were hoping it would. So take a deep breath and everybody right now, everybody take a deep breath. All right, feels better. Relax. It is okay to change the routine. And we change our routines all the time. It doesn't mean that you give into a tantrum all the time. If you see their routine isn't working, you can change it. And that is okay. Therapist and teachers modify routines all the time and this is how we do it. There are three possible things that you can do if it isn't working. You can either change the task itself. And the way you do that is either make it harder or easier, increase or decrease the complexity. Maybe the routine is too easy and you want to increase the difficulty. Or maybe it's too hard and you want to decrease at. You can increase or decrease the complexity or the number of steps that the child has to perform. You can change the task, itself. You can change the environment. And the way to change the environment is to either do the activity in a different setting, or, more likely than that, change the materials and the equipment that you use. A way that you can think about changing the environment is think about a child in a sandbox with no toys, or playing in a bin of rice. A lot of people have been in therapy sessions where their child has played in a bin of rice. There's a bin with the rice in it and nothing else. And the child might play a bit with that rice in their hands. But if you put a little plastic cup into that bin, everything changes, right? Because now that child is going to pick up that cup. Maybe you demonstrate. They're going to pick up the cup, they're going to scoop and pour. By adding a single object to the environment, you have increased the opportunities for ways to engage. So, those are some ways to change the environment. And, you can also change the child. I don't mean this in an ugly way, sometimes people think why would I change the child, the child is perfect and adorable just the way they are. Absolutely they are. What about the child is it impossible for us to change? Certainly not their identity and their beauty. We can change their strength, as a therapist or teacher we can change the child's strengths through therapeutic strengthening activities, working with strength resistance, we can make them stronger. We can change their muscle tone by using relaxation techniques if it's too tight. Or, increase tone if they have very low muscle tone, we can increase it with certain techniques. Everybody can change a child's level of arousal. You all can do that, you all do that all the time, you just don't know you're doing it. You help your child, if your child is very hyper aroused, you help them to calm down so that they're in a place where they can engage in a purposeful activity. Or if they're all drowsy and sleepy, you have ways that you get them to be more alert, and more active and more awake. So those are aspects of the child that we can change. Strength takes more time. Tone takes a little bit less time. Level of arousal, you can make that change fairly quickly, depending on how you're doing it. First of all, relax. If things don't go the way you planned, you can make several changes. To use the same examples that I did at the beginning, [indiscernible] different routines. Simple changes. If a child doesn't like washing their hands, then you name it something else. Like if you say it's time to wash your hands now and the child runs away and screams and hides under the bed, you can name it something else. You can name it bubble time. Or you can name it "We're going to wash the toy fish." You want to make sure your child gets clean hands. That's your goal. You just want to make sure they get clean hands.I guess that's the key that I really want you all to think about, the routines and schedules are intended to make your life and your child's life more calm, not more stressful. So if going to the sink causes your child to be more stressed out, and therefore you to be more stressed out, then you can change the way they get their hands clean. You can take a Tupperware bin and put some warm water in it and put some little toy turtles or toy fish or cups and let your child choose what color of foam soap they want and you just spray that soap in there. Or Easter eggs, you can wash the plastic Easter eggs. If the child is rubbing a toy between their hands with soap, their hands are still getting clean. If washing hands causes stress, playing with soapy water not be so stressful. That's actually an activity that I've done with a little girl who, I didn't think there was any child on the planet more sensory [indiscernible] than my own child, but she is. Absolutely would not even let her hands be wiped off with a washcloth. She ended up washing little plastic things in a bin of water and asking for more soap. Sometimes it's in the spin. So what I changed with that, I was changing the task and the environment. So that's one possible way to change that activity. The point is to make your life more calm and less stressful, not the other way around.If a child doesn't like the obstacle course, then let the child choose what things, what items to use as obstacles, what order to put them in. You can add a big old cardboard box, cut out those and let them crawl through that. Most kids love to go through the inside of something. You can also use a little box to make dice, so a box-box, maybe 6 inches, and draw a picture. You don't have to buy fancy pictures. Draw a picture of an animal on each side. Roll that box like dice. In between each obstacle, maybe you walk like an elephant or hop like a kangaroo or slither like a snake. It still gets the movement going and will get the child that sensory input that is so critical. So that is changing your task and/or environment.Here we go. Here's another simple change, another modification. If the child doesn't like doing laundry, heck, let them choose something else to do. Maybe they don't mind unloading the dishwasher. Maybe if they don't mind wiping the mirror the bathroom. Things that are, it doesn't matter which chore they help with, as long as they're engaged and participating with the family. So they can choose something else. They can reduce the number of steps the child is expected to perform. Do you have a child that really grooves on counting? Some really do. So it takes longer if you count the socks, if you count each item of laundry. But it's okay if it takes longer. No worries. Yeah, you and I could do the whole chore a whole lot faster. But if you want the child to be engaged, it's okay if they embed some of their sensory needs or some of their, some of the repetitive behaviors that help to calm them down, if it fits into the task. If it's counting, if it's color sorting, whatever it might be. So there's so much flexibility, and you can choose what's the best fit for your family and for your child. Also, if there's a chore, if your child is just really not wanting to do something, one of the things we do with the schedule, you can use a first/then system. First off the laundry, then we take a walk outside. Or, another way you can do it is to "sandwich" the nonpreferred task between two things that are preferred. So we will take a walk outside, then we will do the laundry. And I see I have a misplaced slash mark there, but I'm sure you know what I meant. We will walk outside, then do the laundry, then you can play with your iPad. That would be a couple ways to get even a task that the child wasn't especially keen on doing to use the schedule to get that structure in. So now, I'm going to give it back to Sharon. >> SHARON STELZER: Thank you, Kate. I love in your examples, Kate, that you used so many of the strategies. I was writing down all, yeah, she's talking about vocabularies, first/then and compensatory skills. Building the conversation about the sandwich technique, that's a little bit of negotiation, which is a teaching strategy we use with many of our children and students that I think work extremely well with people who have CHARGE, and all people, really. We negotiate a lot of times. First we're going to do this, then we are going to do that and then we will do something really great at the end, as well. I love those examples.I was thinking about routines as Kate was talking. I've been doing lots of meetings with parents during our time from remote learning. I was thinking about routine, and I was thinking about going back for an example Kate gave, and the examples families are sharing with me, there's no time, nothing set in stone that says you have to do laundry at 10 o'clock in the morning even if it was on your schedule. I have two families that I would like to share their examples and I'm sure that with mind.I work with a student and he has a brother who's in college and is trying to finish up his coursework. His dad is working remotely from home. His mother has to go in, she's an essential worker and she has to leave the house every day. So this young man, the mom just said, she goes, our morning routines are really great and he really, is getting up, he makes his bed, he gets dressed. Then, after breakfast and when the family is getting into their routines -- mom going off to work. Dad having to do conference calls and Zoom calls for his work. And his brother is doing his college work. This young man, during the day, we've had to think about his schedule and what should his schedule look like during the day? So we are really thinking about, with the family, what can we do independently? What could he do that maybe he could that would be maybe entertaining him at times? And then what are some things that he wanted to do? So this young man likes his iPad. So they have times that's scheduled and when dad is on a Zoom call that he's looking at, he has his iPad time, which I think is perfect. So he's busy on his iPad and a thing that he likes to do right now is, he's a social guy and he likes to visit different people. Well, they can't visit anybody. You only have the people in your house, the family. So he takes visits, virtually, he's discovered the real estate on YouTube, that he can visit people's houses, virtually. So that's what he does. And that's something he can do independently while people are on their own Zoom chat or working. And then, they do some of his schoolwork later in the evening. His mom says it's not ideal, because he's more tired. But that's what works for them.I have another family who, the young woman is one of three children, so the mom is trying to work from home. The dad is trying to work from home. Plus they're doing, they have to schedule in all three of their children getting in their schoolwork. This mom, I'm sensing a little theme with some of our families, their morning routines are great and their night routines are great. And then trying to find things for her to do independently while others are busy doing their work. What this mom said, which I love, she said weekends are our time for a lot more structure and routine and we're doing some of her schoolwork on the weekends, because the mom and the dad can devote more time. She needs a little bit more help. She doesn't have a ton of independent skills, but they can do something together. I thought that was really brilliant, how they are working it out for them. That's just a little tidbit about some of the families, what they're sharing with me.So now you're thinking about okay, getting these ideas and seeing how I can create my structure, my routine, taking some good examples. I'm sure you have some of your own. So how are you going to talk to your child about this? If you're thinking about that and you're thinking well, at school they have their calendar system, they have this very discrete thing and I don't have the symbols to do laundry. I don't have a symbol to do go outside and swing in the backyard. So what are you going to do?First of all, you're going to think about how does your child communicate? Do they use pictures? Do they use object? Speech? Sign language? Gestures? The whole combination of things? So you're going to try to start at the level your child is there now. They didn't come talk to you from school [sounds like] you didn't have the right tools. So you can communicate, Kate said, and when she was giving examples, you can show so you can demonstrate. You can show objects. Even a child who can read words or read braille, you can show them an object and they will get that. Find the [indiscernible] of this or here's your shampoo, that means go take a shower. So you can show them an object. You can model. You can use resources that you have. I know Kate was talking about drawing. This is my mantra. It will be my mantra from now, from the first day I was teaching until the day I die: you do not have to draw well. You have to draw consistently. If you draw a car with a box and four circles on the bottom of the box and that means car and that's what you teach your child, that's my car drawing. You can use the Internet if you have time -- and you're thinking I don't have time, I working from home, I'm trying to do remote learning for three children in my household, I have to cook dinner, I have to clean the house, I have all this to do, and there's nobody to help me -- you can think about using siblings, you can make it again. Hi, we need pictures of the washing machine. You can use your spouse. You can use family members. Maybe there's somebody, you have an aunt or grandmother who is home and they're looking for something to do. Maybe there's a neighbor and they're not working or they're working from home. I would use all my resources. Hi, I just need pictures. Can you send me pictures of washing machine, a fork, a spoon. All of those kinds of things. Use the resources you have. Brainstorming with her family, how can we communicate that, how do we think they understood? Talking about what's going to be scheduled, what we're going to do next. Maybe if you're doing the obstacle course, you could take an old T-shirt and you can draw on it with fabric paint and every time they do the obstacle course, they wear that T-shirt. Here's your obstacle course T-shirt, and that becomes the symbol.Remember, when we are thinking about our schedules we are building a series of routines. I think this is really helpful. Use general labels. So if something goes wrong you have an out. It in the morning you felt so energetic, and you said okay we are going to all cook dinner together and we are going to make, we are going to make pizza and we're going to have brownies for dessert. So you have that very specific schedule. You have a horrible day. Three out of your four children have tantrums. Your Zoom crashed, and nobody could get online. It's 6 o'clock and you're looking at your schedule and again were going to be making homemade pizza and we are going to be making brownies. If you have labeled the activity that we are just going to cook dinner, cooking, maybe what you could do is order pizza out and you could cook chocolate milk. All they have to do is add the chocolate to the milk. So try to use general labels. That way, if something goes wrong, you have an out. Or if you don't have enough time. The same for art, chores, helping out. You can tailor it to make it shorter or longer if you needed to do that. Maybe for your art project you thought you were going to do this really great thing and you were going to go outside and you were going to draw on the sidewalk and make pictures for people walking by and doing all these great things outside. Suddenly, a storm rolled in. If you just have art on your schedule, that sidewalk chalk painting could become an indoor activity and you can substitute it with something else. Those were some little tips I was thinking about.When you're thinking about the schedule, keep it simple. Remember, if it does not work it's not a failure, but it's a learning experience. As Kate said before, teachers, therapists, we're always learning as we go. And I know that maybe you think that everything goes perfectly all the time for us, but it really does not. It just does not go perfectly for us. Sometimes you're in the middle of a lesson thinking oh my gosh, this is awful, and you have to switch gears midstream. But it's what you learn from it and how you change it. I think it's helpful.How do you cope with change? Acknowledge that you need a change. If something isn't working and you have to stop it, it's okay to stop it. Know that change can be hard and change is hard for lots of us. Change is hard for me. Change is hard for so many of our children. Plan for change. Think about if this doesn't go well, what could be my backup plan? Parents, you guys are really good at that, thinking on your feet and we are on to plan C, A and B has failed, what are we going to do? Then, if something can't happen, think about if not now, when? And put it in the schedule. I will give you the sidewalk chalk painting idea that you say they were all looking forward to that. You say okay we can't do it because it's raining. Let's think about tomorrow, when can we do it? How about right after we eat lunch, we can go outside before we start our afternoon activities. Think about when you can do, that's all the kids want to know, especially if it was something favorite, when is it going to be?Some tips and strategies that we had when you're thinking about your schedule and incorporating structure, make it fun. This is a hard, stressful time for all of us and I was thinking about, you could do Wacky Wednesdays where everybody just wore a different hat, and you could all go to your meetings with a hat on and that's just how it is. You could have Fun Fridays, or maybe you had breakfast for dinner, dinner for breakfast and breakfast for dinner and just change everything up.Think about balancing active and restful activities. Because I know if it's not balanced, we are all restless. If we set in front of our computers for five hours, and that might be our choice, then think about the next activity you can do is to do something that's more active. Use your resources that you have. Your teachers are your resources. I know there are lots of therapists reaching out to families, as well. They can give you tons of ideas of things to do or, when something is not going right, this has happened or, does that happen at school, too? Yes, that happens at school, too. Things go well and things fail.Remember, first of all that you are not stuck at home. You are safe at home and you're keeping your children safe. I think if we have that mindset for our families, that will help our children have a more positive attitude.So we wanted to leave some time for questions and, before we get into questions, I wanted to, we have our contact information will be in the PowerPoint and then, we have several pages of resources. And how we organized the resources, we try to put a caveat what was incorporated into each link, so that maybe there would be something for you and you wouldn't have to look through every single link to figure out what it is. We tried to put some things down there in a more general way that would help you if you're just looking for something.So we're going to open it up to questions. >> MEGAN COTE: This is Megan Cote speaking, a board member of the foundation. I just want to say thank you both of you for this great presentation, and let folks know that if you have questions, you can type them in the chat pod, or you could also hit *6 on your phone to unmute your line to ask a question. Either way would work. And we have about 13 minutes left. I know that Sharon and Kate are happy to answer your questions. And I love your hat, Kate. We can't hear you. Kate, we can't hear you.>> KATE BEALS: I said brilliant things! >> MEGAN COTE: I'm sure you did! But we love your hat.>> KATE BEALS: I'm sorry, I forgot to click that. I'm wearing a hat because it's Wacky Wednesday and Sharon said Wacky Wednesday is a good day to wear hats. So I thought I would put one on.>> MEGAN COTE: That is awesome. So there's a question that said, can you get suggestions was a middle school or it was having difficulties with change?>> KATE BEALS: Ah, change…. >> SHARON STELZER: I think the first thing is, look at what your schedule and the structure is like at your house. And those middle school years are, can be testy years, and they're also my favorite years, my favorite age group to teach. I've taught all different ages, but I do love the middle schoolers. And, I think about things that work for somebody who's having a hard time with change. I would make your middle schooler part of, have him or her part of the, part of planning the schedule and putting in things that they like to do. So, if it is something that they're having a hard time with change being home, I mean, I think you have to talk about that. But saying well, we're home. What special things could we do? What could we put in the schedule? So I think involving your middle school child as much as possible with the change, I think that you have to put change in the schedule. And I think that you have to introduce, like, a little bit of humor when something doesn't go right or, oh my gosh, this is the craziest day. Everything has changed. I know on Wednesdays, you usually go to PT and you have swimming and you're really sad about that. Would you like to, I'm going to let you swim in the bathtub. You can wear your bathing suit and we will call it swimming. So really putting a different spin on things sometimes I think is helpful. Kate do you have anything to add to that?>> KATE BEALS: A thing that I did once with a child who is really having a rough time with change, this was in a school setting and the poor little guy would absolutely fall apart if, on Tuesday, his physical therapist was absent. Or, if anything was different from what he had anticipated. And that's the beauty of the schedule, because you can alter it. But, what worked for him was a little bit of humor and a social story that I called "Uh-Oh, Something's Different." Then, we would talk about, the story went on to say about uh-oh, this thing happen. Something is different. What we would do, instead, if that happens.I shouldn't talk about my own child so much, because he doesn't have CHARGE syndrome. But he does have autism, so change is really tough for him, too. And I think it's important to acknowledge that the change is difficult and to acknowledge his feelings -- yeah, change is hard, it's hard for grown-ups, too. It's hard for grown-ups when they have to stop doing something that they really like doing, or they can't do something they were hoping for. We miss that activity. And we're going to do that again just as soon as it's safe. In the meantime, which of these two things would you like to do? So you acknowledge the feelings and offer two finite, concrete options. That might help. I'll dig around for that story and see if I can find it to adapt it for your particular situation.>> SHARON STELZER: The mom also said, who put the question, she said that her child is having problems, refusing to do school work and then having tantrums. I think the best thing for that way, for right now, is to put that schoolwork aside and think about what's being asked of him for the schoolwork? If it's like math activity, can you incorporate counting in a different way or a more functional way? Because there's no way, especially with a middle schooler, you can force them to do the work when they're refusing to do the work. I think what Kate said, acknowledge you're really sad that you're not in school and you want to do your work in school. We are having that same issue with many of our students, that they don't want to do schoolwork, because they do schoolwork in school and schoolwork is not for home. I always think about what could they do? Could you make different types of routines and circle back to some of the schoolwork later when they are in a better mood? That's where you change some of the activities and change maybe the child, to get that in a more neutral stage.>> KATE BEALS: And like Sharon said, a more neutral state, that might also happen with some sensory-based activities. Also, I think you can consider, one other possibility is that changing the environment, who doesn't love to throw a blanket over the table and do their work inside a tent with a flashlight? And it's okay, your child -- oh please, please, embrace this concept -- your child does not have to be sitting at a table to do their work. If they need to be on their back to do their work, that is okay. If they need to be lying on their side, or lying on their back, it's okay. If you're in, for schoolwork, if you as a parent are having the delivering instruction where, if the teacher is delivering instruction, that that screen can be positioned overhead with the child lying on their back.>> SHARON STELZER: There was another question about, I think it's about, many of our children are feeling confused about what's going on, Megan had the question, she's doing some behavioral support for families. I think this is a great question for lots of families, because students think that maybe they're sick. I had a conversation with a mom who I know is on this link that I think her [sounds like] he had the COVID.>> KATE BEALS: Oh, yes.>> SHARON STELZER: So, really thinking that he had COVID-19 because they were talking about it so much. I am a huge fan of social stories and really looking at social stories using pictures to maybe talk about that. And some of the links that I put in there, there's a nice social story about seeing people with masks. I think that's a nice way to do that. You can do social stories with pictures. You can do social stories with sign language. There's lots of different ways. But I think that is some resources to do that. And if you can't find the resource that you want in the list of resources, email me and I could maybe send you some more, I could do a little bit more research. I also put in the resources there are, there's a whole link for ASL users, for people who use ASL that has some of the things in there, there's all kinds of stories, I don't know what else, I can't remember what else is in there, because I did look at the website little while ago. If you're having trouble and you don't know the sign for something and you have a picture and it doesn't have the ASL, there are apps that you can use that you can do that. You can also touch base if you are in contact with their schoolwork, their teachers, we are doing some videos. I know some of the teachers, and they did a whole video about signs around eating, signs around bedtime. So you can ask some of the staff at the school if they could just put a quick video together with some signs for that. I think that question was, "Can you recommend a place to find pictures for picture schedules that include ASL?" So I think that answers those two questions. >> KATE BEALS: I also want to just give a little commercial for the World Health Organization website that's listed on the resources pages. It is FANTASTIC. There is so much great material on it. There's a story for children about COVID-19, and they have six different pages like, they look like posters, that are about, just about this very thing. About caring for children during this time, it's just an amazing resource. I was really tickled. As you go through these, please make a special point of looking at that one, the World Health Organization website. They have [indiscernible] as well.>> SHARON STELZER: There's another question about, that their student or their child waking up early seems to be a struggle. Any suggestions? And my first question is, do you have to be up early? Do they have to be up early? Can they sleep in? And then, you just start their routine for when they wake up? Is there an appointment they have to be to, a Zoom lesson or something? That's just my first question, do they have to be up early?>> KATE BEALS: Sharon, tell me the situation you were sharing with me, if a child wakes up at 8 o'clock their routine starts. If they wake up at 10 o'clock, their routine starts. The same routine.>> SHARON STELZER: Right, I have a student friend of mine, he is a teenager and teenagers like to sleep late. So the mom is a very wise mom and she said well, if he sleeps till 11, when he gets up at 11 o'clock we start his routine. He has to take a shower, get dressed. Starts then. So it doesn't matter if he gets up at 8 or if he gets up at 11. If there's nothing pressing, like an appointment, a lesson with a teacher or a check in, then she allows him to sleep in. I thought that was a little bit brilliant, because I think you can still have structure and routine. It doesn't mean, I don't think there's the wake up police when there's nowhere to go to, so you don't have to be up at 8 o'clock. If they missed breakfast and you don't want to be cooking breakfast all day, you say well, lunch is in an hour, or you can have brunch. Things like that.>> KATE BEALS: Another possibility on that is the very first thing, whatever the child loves the most is the first thing to go on the morning schedule. At night, the night before bedtime, you can review the schedule for at least the next morning. It doesn't have to be the next day, but what three things are you going to do in the morning when he wakes up? The first thing on the list that is planned is one of your absolute favorites. It's okay to be a little more flexible now, and to... I don't know, set things up in a way that will, choose what battles you want to fight right now, and take it easy on yourself and take it easy, a little bit easier with trying to wear thousand hats. That's too many hats. I didn't mean to make a pun. >> SHARON STELZER: It is 9:30 PM, so we wanted to thank you all for coming and thank you for taking time out of your schedule to be with us. If you have more questions, here is our contact information and it will also be, the webinar will be posted on the CHARGE Syndrome Foundation in a couple of days. So thank you all for your time and listening.>> MEGAN COTE: And Kate and Sharon, on behalf of the CHARGE Syndrome Foundation, this is Megan Cote speaking, I want to thank you both for sharing your expertise with us tonight. And I also want to thank Robbin Bull from the National Center on Deaf-Blindness for doing all the troubleshooting with the technology this evening. We really appreciate your help, too. I have put in the chat pod a link to a survey. So I'm hoping for a quick favor from everybody who is still on the webinar right now, your input is extremely important to us. So if you would take two quick minutes to click on the survey link in the chat pod and let us know what you thought of the webinar tonight, we'd be grateful. Also, because of COVID and parents being home and having some time to join calls in the evening to gain some more knowledge and skill and connect, we'd love your input, too, for future potential opportunities to engage. If you would let us know -- either in the chat pod as you sign off or in the survey -- additional trainings that you would like us to try to organize, we'd really appreciate that input. One last thank you to all of our presenters and to all of the attendees who took the time to participate tonight. We hope you have a wonderful remainder of your evening, and we thank you again for supporting the CHARGE Syndrome Foundation. Good night, everybody.>> MULTIPLE VOICES: Good night. Thank you.[END TRANSCRIPT] ................
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