CHARGE Syndrome: Teaching Strategies for Children

Chapters:

1. Introduction
2. Introducing A Child with CHARGE to the Classroom Community
3. Gathering Information and Observing
4. Adapting Teaching Techniques for CHARGE: Calendars
5. Adapting Teaching Techniques for CHARGE: Sensory Breaks
6. Incorporating Functional Skills into the Curriculum

CHAPTER 1: Introduction

STELZER: I think the approach with CHARGE children is that they're really different than how you teach other children in some ways, but very similar in other ways.

You use some of the same teaching strategies, so you use organizational skills, you use all those things, but you also have to remember that children with CHARGE, when they were born, they came from a very medical history.

NARRATOR: An infant wearing a diaper lies in a crib. A feeding tube extends from the child's stomach. Electrodes are attached to the baby's chest, and a small tube has been inserted into one nostril.

STELZER: And that medical history may follow them through their school years.

NARRATOR: An adolescent boy wearing a Red Sox jersey and a floppy, brown hat picks strawberries in a field. A trach tube is clearly visible.

STELZER: Most children with CHARGE have a hearing impairment and some kind of visual impairment. Not all children are totally blind, are totally deaf, but they have some combination of those. So that's the first thing, as a teacher, you have to really think about in your strategies: "What are their sensory losses?"

NARRATOR: A young, dark-haired boy wearing a blue T-shirt smiles at the camera. His left eyelid droops slightly. He wears a hearing aid in each ear. In another photo, a curly-haired, blue-eyed toddler is held by her father. Both eyes display a cleft, or coloboma, in the iris.

STELZER: You have to really ask, "What is their vision like? What is their hearing like?" And that's going to be your first cue in how to set up the environment to make it better for them to be able to learn.

CHAPTER 2: Introducing A Child with CHARGE to the Classroom Community

STELZER: When you're talking about having a child with CHARGE come into your classroom, if the child themselves can talk about what it's like to have CHARGE Syndrome, I think that's always a really great starting point. Unfortunately, a lot of our kids can't do that and can't say and can't advocate, "Well, I have CHARGE Syndrome," and you know, "this means I have to sit closet to the teacher because I don't hear as well," and doing things like that.

But it's something that the teacher can do either prior to the student coming in or when the student comes in, that you can talk about. And I think it's important for all children to know that people have differences, and it's just a different kind of difference that children have. So I think it's important to say what CHARGE stands for, what that means. "Well, it just means that Jose has to sit closer to me, because he can't see as well."

NARRATOR: A young boy with glasses, wearing a blue sweater, kneels on the floor in front of a book shelf. He holds a book with a picture of the space shuttle very close to his face.

STELZER: "He might need a little space, and he doesn't like you touching his hand, so if you just give him a little bit of space." So giving children things that they can do concretely. "Oh, it means that he might need a buddy to walk down to the cafeteria. Would you like to be his buddy today?" Those kinds of things.

NARRATOR: In a photo, two boys smile as they share a desk. One of the boys wears glasses and uses a slant board as he does his schoolwork. The other boy has a worksheet with large type and graphics.

STELZER: And so giving other students in your classroom something that they can do to welcome the student with CHARGE Syndrome into their classroom I think is really helpful.

CHAPTER 3: Gathering Information and Observing

STELZER: I think if you're a teacher, if you have the basic skills that you were trained with in your education, that's where you start when you have a student with CHARGE coming into your classroom. So I think about, "I know I have a student who's coming in September and they have CHARGE Syndrome," and you know, "I don't know anything about this syndrome, so what am I going to do?"

First you're going to look at the information that they come with. So you're going to find out how old they are, you're going to find out what their vision is, what their hearing is like. What did they learn in their old school? What level are they on? Then you're going to do what you do when you have any student come in. You're going to do some observation.

NARRATOR: In a classroom, a female teacher in a white blouse leans over a desk where a young girl in a dark top is working. A boy stands nearby with his back to the camera. In front of the girl, three large strips of paper — one pink, one yellow, and one blue — are arranged on the desk.

There is writing on the paper. In a photo taken outdoors, a woman and an adolescent girl with a long, brown ponytail stand near one another on a path. The girl wears glasses and a hearing aid, and she is writing with a pencil on a clipboard which she holds quite close to her face. The woman appears to be signing to the girl.

STELZER: You're going to really look at them. That's what we, as teachers, are trained to do. You observe and then you react to that observation of what the child is doing. I think parents who have children with CHARGE in their family, they are the expert on their child. They've probably been through a really rough road from their birth because of the complicated medical history, so I think that's the first thing — that they have all the information and they have all the little tricks that work, and it's taking the tricks that work and putting it into your teaching strategies.

NARRATOR: Two women — a mom wearing a pink sweater and a teacher in a light green top — sit in chairs in a large office to discuss a child's progress. In front of them on a low table are several pages of information about the child, which the mother picks up and refers to.

STELZER: I think that's a really great question for teachers to say to the parent, "How will I know when they're tired?" "How will I know when they're upset?" So the parents can share that kind of information.

NARRATOR: In a photograph, a toddler lies on his side on a colorful patterned carpet. His parents sit nearby, cross-legged on the floor, while speaking with a teacher.

STELZER: Parents are really great. They're very good at describing what their child does and how they act and how they react, and I think that's the kind of information that you can gain from parents, because you, as a teacher, you have the skills. You know how to teach math and science and communication, and that's your collaboration, and it's meshing that with what the parents know and how the child's going to react.

CHAPTER 4: Adapting Teaching Techniques for CHARGE: Calendars

STELZER: I think students with CHARGE really have a need to have a really clear beginning, middle, and end, and we're good at that as teachers. We can do that. So it's organizing the classroom, so "This is what we're going to do first, and this is how I'm going to relay that information." Whether it's using a schedule, which is like a calandar — "First we're going to do this" — and teachers do that naturally. You have a schedule for the day. It's just relaying that information to the student with CHARGE Syndrome in a way that they can understand it.

NARRATOR: A boy in a red and blue plaid shirt sits at a desk. In front of him, three large symbols representing a washroom, a grocery cart, and cooking utensils are arranged left to right on a board.

STELZER: Maybe they can't understand a whole sentence, so maybe you use a single word. Maybe it's a single sign. Maybe it's a picture, or maybe you show them an object for what you're going to do, so that could be the clear beginning. Look over here so you can decide which jobs you're going to do.

NARRATOR: In a video clip, Sharon Stelzer and a boy with blond hair are in a kitchen wearing aprons. They sign to one another and look at symbols posted on a refrigerator as they get ready to prepare a meal.

STELZER: For example, if we were doing a cooking lesson with my classroom, and have students with CHARGE in it, I would set it up so that I might have some of the ingredients out on the counter, I might have the recipe already out so that they would have access to that, I might have a checklist.

NARRATOR: On the counter, we see a large container of olive oil, a jar of pasta sauce, a box of spaghetti, and a loaf of bread wrapped in foil. Next, we see a recipe that contains both printed instructions and symbols for ingredients, such as water, oil, and eggs.

STELZER: For organization, I like students to be really involved in setting up their own kind of schedule for themselves, so I might have their pictures on the refrigerator, and I might have jobs that they're going to do in cooking on a little picture, and that they could pick, because we know students with CHARGE, they like to be in charge, and they like to have lots of choices.

NARRATOR: Sharon and the student review the list of tasks designated by symbols which are posted on the refrigerator. They sign to one another as the student decides which task he would like to perform first.

STELZER: You want to do the bread? All right.

STELZER: If they could have a choice, "Well, would you like to cut the tomatoes for the salad, or would you like to do the green pepper?" or "What would you like to do first?" Because if you're cooking in a cooking class it doesn't really matter what we do in what order, if we make the salad or if we make the spaghetti first. That doesn't really matter to me, because everything has to get made for the lunch anyway.

NARRATOR: The blond boy picks up the loaf of bread from the counter and places it on a table. He removes the bread from the bag in preparation for slicing it.

STELZER: So letting the children have the opportunity to select what they would like to do and having some say in that, I think makes a more successful lesson for them.

So for organization, I might have all of those — I might have the pictures set up, I might have some of the ingredients, I may have some of the ingredients in another spot. "Do you know where you get eggs? Do you want to get the sauce too?"

NARRATOR: Back in the kitchen, a dark haired boy in a red sweater stands in front of the refrigerator. He wears glasses and we can see his hearing aid. After looking at symbols representing ingredients, he walks off to find what he needs.

As the shot widens, we see two boys and two teachers involved in food preparation tasks.

One teacher helps a boy with blond hair open a container with a green lid. The boy then shakes the contents of the container over a loaf of bread which has been sliced in half, lengthwise.

STELZER: I can test out a little bit of their skills, so I can see what kind of knowledge they have, and they can also be part of that clear beginning, middle, and end. By having them set up some of that, it's really having them participate in the whole process.

CHAPTER 5: Adapting Teaching Techniques for CHARGE: Sensory Breaks

STELZER: I think when you're teaching any kind of student, active versus passive learning — we do that naturally as teachers. We know when the kids in our classroom need to go outside for recess because they can't sit still another minute. And I think it's especially true with children with CHARGE Syndrome.

NARRATOR: In a photograph, several boys sit in a circle on the floor of a classroom. One of the boys wears a red and white Santa hat, and another appears to have a sort of crown made from wrapping paper. A teacher in a white shirt and a festive tie raises his arms and leads the group in a stretching exercise.

STELZER: You think about the structure of their body — the children with CHARGE Syndrome. A lot of times we see that their shoulders are a little bit more hunched; that they sometimes have to use all their muscles just to concentrate on something on the page; to sit in the chair.

NARRATOR: An adolescent boy sits at a desk, writing with a green pencil. He leans over the desk with his shoulders hunched.

STELZER: So I think it's really important for children with CHARGE to have some kind of a sensory break.

NARRATOR: In another photograph, several students join a teacher outside on a running track. The teacher stands with her legs spread and her arms extended to either side. The students attempt to copy her movements.

STELZER: And there's lots of creative ways that you can incorporate active learning; it doesn't just mean getting up and running around or going outside. I like to label things in my room with words or pictures, and it also helps the students orient to the room, so a great active lesson is you give them a stack of pictures or cards and, "Can you go find something in the room that's the same?"

NARRATOR: On a tabletop in a classroom, four symbols, identified by a corresponding word, are arranged left to right. We see a stick figure walking, a photograph of a stroller, a drawing of a red book, and a photograph of a blanket. Next, we see a teacher and a young boy wearing a red and white striped rugby shirt looking at a slant board which has a symbol of two figures at a desk, representing work, and another symbol, a picture of a van.

STELZER: They don't know that you're purposely picking an activity that has an active component to it, but you do, and it also has a cognitive component. You're working to see: Can they match a picture to a word? Can they match an object to another object? So it's all those kinds of skills that you can work on, but it's thinking about it and preplanning as a teacher and really having that purposeful planning for the student with CHARGE.

CHAPTER 6: Incorporating Functional Skills into the Curriculum

STELZER: I think functional skills are the most important thing that we as teachers can do for our students. Teach them something that they will be able to use in the future. And sometimes that means the precursors to those functional skills — so it's sort of the beginning skills; the building blocks for skills that will be used later on.

NARRATOR: In a photograph, a boy wearing a blue apron prepares to place several cans of soda in a vending machine which he is refilling.

STELZER: Children with CHARGE Syndrome are highly motivated to be in charge, and they really want their opinion, I think — this is, you know, in my opinion — that they like their opinion to be first and foremost, and I think it's really respectful if you as a teacher can teach them to negotiate.

NARRATOR: Back in the kitchen, a teacher and a dark haired student wearing glasses stand near the refrigerator and have a conversation using signs and pointing to symbols. We see the young boy place his hand on his chin as he considers his choices.

STELZER: Because I've seen with younger children who have CHARGE Syndrome who haven't learned yet that art of negotiation, you might see a tantrum because they want to do what they want to do immediately, and they haven't learned that.

NARRATOR: As we watch, the two students perform various tasks to prepare a meal, including getting ingredients from the refrigerator, wrapping the bread in foil, and chopping vegetables.

STELZER: Nice work! So I think a great skill that a teacher could give to a student with CHARGE is how to negotiate and use that back and forth. And it allows you lots of opportunities for language, turn taking, socialization, because it is all about that. We do that, we negotiate every day in our lives, so if I can teach my student to share something, it's the beginning of a turn taking, which is a part of a conversation. In a conversation, if you always have the turn, you're not having a conversation. So it's all those building blocks.

NARRATOR: A teacher and the dark haired boy stand near a pot of water which is boiling on a stove. He grasps a bunch of uncooked spaghetti and breaks it in half, spraying the teacher with small pieces and causing the others to laugh. ( laughter )

STELZER: Turn taking becomes a functional skill that you can teach because it goes for conversations, it goes for work skills, has all of those kinds of things that become functional later on. I think it's really important to families that you teach skills that they can use.

I can always think about students — I had a student in my class — "My son can't go bowling." And I said, "Well, why can't he go bowling?" "Well, he can't see the pins that far down the end." And I said, "But does he really need to see the pins down there? Can you tell them? "Can you teach them all the other aspects of that?" And it becomes a really functional skill, and his parents had never had thought of that.

NARRATOR: A photograph shows a young boy wearing a striped shirt preparing to roll the ball in a bowling alley. On the ground near his feet, we see a board with the numbers "1," "2," and "3," each with a corresponding symbol.

STELZER: And so we taught him how to go bowling in school, and I could get in all the skills that I wanted to teach, because I can teach counting, I can teach adding — you could add how many pins — you could teach turn taking, you could teach the rules of the game, so something that is sort of a "fun" activity becomes a functional activity, because it's something that he can do in the future for leisure with his family or in the future if he's in a group home or if he lives in an apartment with his friends, whatever he wants to do.

NARRATOR: A dark haired boy in glasses stands in a bowling alley behind a ramp-like device which helps to roll the ball towards the bowling pins. He is smiling with his arms upraised. A woman in the background cheers as well.

STELZER: I'm not just teaching these skills because I have a little check-list of, "Oh, every student should learn these skills." I really want to think, "What skills can this student use that will be functional; that they'll be able to use in the future?" And that's really the goal. I mean, that's why we teach kids to communicate, because we're social people and we want our kids who have special needs to be social people.

NARRATOR: In the kitchen, a blond boy walks toward the refrigerator and gestures in a friendly way towards the camera. We then see him putting drinking glasses on a table. A dark haired boy wearing a white apron carries a bowl full of spaghetti to the table. A large bowl of salad, as well as a bowl of pasta sauce, are also on the table.

STELZER: I think any kind of time that you can do functional activities or something that has a purpose, I think it's really important.