CHARGE Syndrome: Teaching Strategies for Children

CHARGE Syndrome: Teaching Strategies for Children

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NARRATOR: The name “Perkins”
carved in stone. Below a Gothic tower, a boy
navigates with a cane. A title: On a black background, the word
“charge” is spelled out in large, red letters. STELZER: I think the approach
with CHARGE children are that you really… 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 have… are
totally blind, are totally deaf, but they have some
combination of those. So that’s the first thing you
have… as a teacher, you have to really think about
in your strategies are, “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 be,
“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. NARRATOR:
Fade to black. A title: STELZER: When you’re talking
about children… 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 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, you know, 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. NARRATOR: Fade to black. A title: STELZER: I think
if you’re a teacher, you have the basic skills that
you were trained in your education that you
can… 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?” You’re going to look at your…
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. 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 been through probably 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: And that’s a… 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 you have… that’s your
collaboration, and it’s meshing that with what the parents know and how the child’s going
to react. NARRATOR:
Fade to black. A title: 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 calendar– “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: So 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 classrooms, for example, say,
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: I like, for
organization, I like students to be really involved in part of
the organization 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
for… 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 anyways. 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 the 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, 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 that whole
process. NARRATOR:
Fade to black. A title: 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. 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 out… 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. They don’t know that it’s, you
know, you’re purposely picking an activity that has an
active component to it, but you do, and it also has a
component that you’re… a cognitive component. You’re working to see on 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 do, but it’s thinking about it and
preplanning as a teacher and really having that
purposeful planning for the student with CHARGE. NARRATOR:
Fade to black. A title: STELZER: I think functional
skills are the most important thing that we as teachers can do
for our students is to teach them something that they will be
able to use in the future. And if sometimes that means sort
of the precursors to those functional skills
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 it’s a great thing a
teacher can actually… a skill that a teacher could
give to a student with CHARGE is how to negotiate and 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…
we talked about sharing, to share something. It’s the beginning of a turn
taking, which is a part of a conversation. If you… in a conversation, if
you always have the turn, you’re not… never 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… well, you know, “My son can’t go bowling”– 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
down… that far down the end.” And I said, “But does he really
need to see that… “the pins down? “Can you tell them? “Can you,” you know, “teach them
all the other aspects of that?” And it becomes a really
functional skills, and you know, parents hadn’t…
his parents had never had thought of that. “Well, we didn’t think about
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, I mean, 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. NARRATOR:
Fade to black.

1 thought on “CHARGE Syndrome: Teaching Strategies for Children”

  1. I am currently working one on one with a student that has charge. These videos are very helpful! P.S. I love all of the accommodations available in this video! You guys rock!

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