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CHARGE Syndrome - The Impact on Communication & Learning

By Martha Majors — Read full transcript

Martha Majors provides insights on the impact of medical and physical challenges for children in educational environments. She also provides guidance for educators to help them develop an effective educational program that helps improve the emotional wellbeing and success in school for students with CHARGE.

Chapters: 1 — The Impact of CHARGE on Communication and Learning; 2 — Impact of Health Issues and Sensory Losses; 3 — Unique Educational Needs for Children with CHARGE; 4 — Educational Priorities Expressed by CHARGE Parents; 5 — Accommodations & Adaptations to Meet the Educational Needs of Children with CHARGE.

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Webcast Transcript:

CHAPTER 1: The Impact of CHARGE on Communication and Learning

CHARGE Syndrome: The Impact on Communication and Learning with Martha Majors. MAJORS: CHARGE Syndrome is actually a recognizable pattern of birth defects, and it presents with a number of complex issues — specifically medical and physical.

I would like to direct you to the CHARGE Foundation website and a recent webcast that Pam Ryan did in terms of an overview of CHARGE Syndrome. The purpose of today's webcast is actually to explore the impact of medical and physical events on children in educational environments.

CHAPTER 2: Impact of Health Issues and Sensory Losses

MAJORS: As we've learned about CHARGE from an educational point of view, we know that there are several factors.

When children come to school they come with their medical issues, and we have to be aware of those. And families have spent perhaps the first three years of their lives thinking about the medical implications on their child, and we want to be able to acknowledge those. And for many kids, those medical implications aren't going to change, so as we develop an educational program for this particular type of child, we have to look at the medical pieces and figure out how we imbed them into a classroom.

For example, a child may come in actually having never left their home. They may be in a hospital for several months, they also maybe at home with nursing — with a lot of caretakers with a medical point of view. So when we first meet that child, we look at them from an educational point of view and often realize that that safety net of being at home, being well taken care of, is now going to shift into an educational environment.

NARRATOR: A curly haired toddler in a pink t-shirt smiles broadly as she is lifted in her father's arms.

MAJORS: We want to be able to understand the G-tube feedings, we want to be able to respect the fact that a child may have significant breathing issues, and how we marry those interventions with educational strategies can be a challenge. We need to understand the role of the nurse with that young child and help them understand what we're trying to do, and at the same time respect their role of nursing in an educational program.

When we think about the medical issues, there are day to day impacts of medical. We have, for example, met several children with CHARGE who have really a dysregulation problem with sleep, and parents will tell us, "My child is so wound up; they're so into rituals that they can't calm themselves down to sleep."

So they may sleep because their internal state cannot be regulated. They may not sleep because they have a feeling of illness. When kids are lying down and they have reflux issues, they may have some upset and some discomfort. So parents will tell us, "When my child sleeps, "we have to make sure they're at an angle so that they're able to digest appropriately," and for respiratory issues, they may need certain positioning.

So sleep can be a huge factor. When we find out that a child comes to school and they've been up all night, that's a really good cue about how the day might go for that child. So although sleep can dramatically affect a family system, it can also affect learning as children come to school.

A boy works on his math worksheet. NARRATOR: In a classroom, a boy in a purple and gray rugby shirt sits at a desk. His elbow is on the desk, and he rests his head in his hand as his teacher encourages him to work on his math worksheet.

MAJORS: Children with CHARGE do have frequent illnesses. It impacts their day to day functioning pending how they're treated for those illnesses. So, for example, a child with an ear infection will have medication for that ear infection. A child with headaches, once diagnosed, can also be treated. So as with typical children, there are many ways to help that child feel better.

The difficulty is determining what's wrong, and so we want to be able to teach children how to communicate that they have a headache, that their sinuses feel clogged, that their ears hurt. So families are really good at assessing that, but when children are in school, it's important for us to able to look at behavior that could indicate an illness.

NARRATOR: On a laminated chart, a number of illustrations depict different feelings and emotions, such as happy, tired, and sick. Children and teachers can use the chart as a nonverbal prompt to communicate feelings.

MAJORS: If we can get that behavior to equal "ear infection," then what we can eventually show the child is a picture of an ear and pain so that they can begin to point out, "This part of my body hurts, and this is it, and that's the same as the picture."

We try to make it an educational opportunity so that children can better communicate how they feel. If the child has an ear infection, then we also need to be aware that their hearing function for that period of time may actually be a little bit different, so we want parents to tell us when their children are sick.

We want to know that they're being treated for an ear infection so that we may shift the type of communication that we're using in order for them to continue to participate in their school activity.

NARRATOR: A boy in a red shirt grins at the camera as he leans back against a pillow. The boy appears to be resting rather than preparing to sleep.

MAJORS: Other areas of concern around medical could include the fatigue factor for a child. Regardless of their age, there are fatigue issues that can happen throughout a child's day.

I will talk more about that under "Sensory Need," but from a medical point of view, children can fatigue. They put a lot of energy into learning anything, and so when we watch their little bodies figure out how to breathe correctly and make sure that their digestive system is comfortable, we have to also look at what we're trying to teach them at the same time, and always, always, keep those medical issues in the front of our minds. They're not hidden. They're very obvious, and parents really rely on the professionals to make sure that we understand why those things are important.

CHARGE conference. NARRATOR: In a photograph taken at a recent CHARGE conference, a couple holding an infant converse with two women. The women wear name badges that indicate they are professionals attending the CHARGE conference.

MAJORS: Other areas of concern that typically develop as a result of the neurological insult to the brain are issues related to anxiety and obsessive-complusive disorder.

Typically, we haven't seen those so much in younger children, but as children turn five and six, we start to see an inkling of a little ritual that happens, or we see a little obsession about, when a child's in school, making sure the paper is straight on their desk.

And we look at it and we say, "That's nice, the child's organized." As the child gets older, that organizational piece can sometimes take over — the need to have things in the same place, the need to have a light and the lampshade at the same height, or the need to turn a light on and off several times. So we believe that those behaviors actually come as a direct result of the neurological implications of CHARGE.

NARRATOR: In a video clip, a dark haired boy moves from a desk to a large display with many labels containing words and symbols. After quickly selecting a number of labels, he turns to another board and notes his progress on a tasks calendar.

MAJORS: Those are really important as we look at those behaviors in a school environment, but they typically, at least from my understanding, come from a medical component and not purely behavior.

And one of the areas of concern that families share with us is that they're not doing this on purpose. They're not doing it to make the teacher's life difficult, they're not doing it because they want to upset mom, they're doing it because they have this internal need to perform this ritual or routine over and over.

As we learn about that, we begin to understand that it's an internal state, and it's not necessarily caused by the school environment. What can cause the internal state to become more aroused is that the school environment has expectations and puts demands on children to learn in some way, and as children are more challenged they become more anxious.

As they become more anxious, they become more ritualistic, so there's a whole domino effect, and I can't emphasize enough that that domino effect isn't because the child is being manipulative. It isn't like they want this behavior to happen, it's more that they need this behavior in order to soothe that internal state.

CHAPTER 3: Unique Educational Needs for Children with CHARGE

MAJORS: One of the interesting things about CHARGE Syndrome is that children typically have the overall descriptor of being deaf-blind, so the children have a combination of sensory losses. And children that we've met may have a very, very mild vision loss — i.e. their coloboma is in one part of their eye; it doesn't really impact their functional vision.

NARRATOR: A toddler with curly hair wearing a white sweater is being held by her father. She faces the camera and colobomas are clearly visible in the lower portion of her irises.

MAJORS: They may have a severe to profound hearing loss.

NARRATOR: A photo shows a smiling dark haired boy in a blue t-shirt. The boy is wearing hearing aids in both ears.

MAJORS: Or they may be really low-vision, where their colobomas are centrally located and they're actually not seeing. If I were to look at them, they're not looking at me face to face. They might use their peripheral vision a little bit more, but they also may have very good hearing and they're using spoken language for their communication.

BOY: I'm Iron Man.

WOMAN: You're Iron Man?

NARRATOR: A boy sits at a desk in a classroom and turns as he notices the camera. He is wearing a t-shirt with superhero characters.

MAJORS: When we think of how to develop communication programs for children with CHARGE syndrome, we borrow the philosophy from educating children who are deaf-blind.

The teacher holds her hands close to the boy's face as she gestures and signs. NARRATOR: A photo shows a boy wearing glasses sitting across a desk from a teacher who is wearing a long-sleeved blue shirt. Leaning on her elbows, the teacher holds her hands close to the boy's face as she gestures and signs.

MAJORS: I think it's important, however, to mention why we do that, because families really want to be able to develop in the home situation the best communication modes that are effective for their children.

So we talk with families and with team members about the possibilities of how that child with CHARGE is going to communicate. And we look at speech as a primary mode because we've met many children with CHARGE who are very effective communicators using speech.

We also know that there are a group of children with CHARGE Syndrome who don't develop speech. They might develop a significant amount of expressive sign language, but more than that, they're really visual learners, and the visual learner part is really important when we look at developing programs that use a symbolic system.

NARRATOR: A boy wearing a red striped shirt sits at a desk and holds a piece of paper quite close to his face. On the desk is a piece of paper with a large graphic of two red mittens with the word printed underneath. He has written the word "mittens" in pencil on the page as well.

MAJORS: Parents are really excited when professionals talk to them about this opportunity of a "total communication" philosophy for their child, because typically, they think typical children use speech and they might use gestures, and they, and all of us, use pictures; that's part of how we learn.

We've taken those modes that include simple sign, sign language, pictures, gestures, symbols, print, speech, and Braille and we look at what components for a child with CHARGE are going to work best.

An adolescent boy with glasses and a teacher are in a kitchen preparing to cook a meal. NARRATOR: In a video clip, an adolescent boy with glasses and a teacher with short, dark hair are in a kitchen preparing to cook a meal.

TEACHER: Salad. Frosting.

NARRATOR: The teacher signs to the boy as they move to the refrigerator door where a series of ingredients including spaghetti and mushrooms and tasks such as slicing tomatoes or setting the table are represented symbolically.

MAJORS: So there is a system called Mayer-Johnson symbols. We have found that with these children it's a very effective way for them to develop expressive communication so that if I'm signing to a child and they want to tell me what they want, they may form their hands and try to make the sign for "drink," but if I point to a picture of a symbol that shows "drink," then it gives them some support in order to be able to either pull the sign out of their head or to be able to simply point to that picture.

So with younger children, we always want to make sure that they have access to a visual system. We want to make sure that they can see the visual system, so we of course want to go back to the vision report and understand what is that child actually seeing. That's not so different than a typical deaf-blind child, but we've seen over time that young children with CHARGE Syndrome often don't use their signs expressively immediately, and so to give them an option for communication we give them other ways to communicate.

NARRATOR: In a classroom, a teacher stands near a desk where a young boy is seated. On the desk in front of the boy is a black slant board with a number of symbols, pictures, and words. The teacher and the boy are opening a binder which contains a page where those words and symbols can be placed to answer questions.

MAJORS: We also have used Mayer-Johnson symbols with children who actually use speech. We have noticed that when children with CHARGE Syndrome become more anxious, they're not able to speak as clearly in terms of their thought process, and so by giving them a set of pictures, it really grounds them. It sort of soothes their anxiety enough so that they can pull the words out and we can say to them, "You're a little bit upset, we're going to go and we're going to take a break," and we're going to show them exactly what we're going to do so that when they're anxious, if they can't process the sign language, they can be more grounded with pictures. And I think that's a really effective strategy that we use for these children in terms of their overall communication.

CHAPTER 4: Educational Priorities Expressed by CHARGE Parents

MAJORS: Parents are wonderfully eloquent about who their children with CHARGE are. They love them dearly. They have such a remarkable enthusiasm when they talk about their children. The interesting thing about these children is that they come with enormous personalities.

A dark haired boy and a teacher preparing to put a pot on the stove. NARRATOR: In a video clip, back in the kitchen we see a dark haired boy and a teacher preparing to put a pot on the stove. Suddenly, a classmate pops up in front of the camera to steal the stage. He holds a container of garlic powder up the the camera and gives the "okay" sign.

MAJORS: They enter a room and they're there. They have this amazing face, and they have sometimes a funny little grin, and they have this look in their eye that makes them look like the most mischievous child you ever want to meet — and in fact, they are. They always want to play, they want to engage, they love to talk about their own topics, and sometimes their topics may not match our topics.

When we think about the essence of what is important to include in a program for a child with CHARGE Syndrome, the art of negotiation — which I think we all learn at some point — needs to be a critical part of their teaching. They often come to school with an idea that, "This is what I'm going to do today," and their idea may be a wonderful one, but it doesn't always match the timing in a school schedule.

So if we can say to John, "you brought your favorite characters to school today. At 10:00 we'll be able to talk about them, but first we need to participate in morning circle." We can do that negotiation in many ways. We can use a sign language model, we can sow through their calendar system: "First we have morning meeting, "and then we have academic subject math, and then you can play with your characters."

The boy fills out a worksheet. NARRATOR: In a video clip, a teacher stands near a desk where a young boy is working. She signs to him and points to the desk where a schedule lists both times and activities which are also depicted symbolically. After the boy fills out a worksheet, we see him playing with some of the characters he brought to school.

MAJORS: That's a simple negotiation. It's a visual, concrete association, because if we're going to negotiate, we want to make sure that this particular child understands the negotiation.

They're pretty persistent in letting us know what they want, and negotiation can be really helpful to them as well as to the family system and to the school professionals because we negotiate all day long with each other as adults. It's an art that all children should learn, but the reason it's a little bit different with these children is that they're very persistent in wanting to create their own agenda.

NARRATOR: A young boy with glasses wearing a red shirt with large blue and white bands across the front grins as he holds up two small "Scooby Doo" figurines. Behind him, his teacher smiles broadly.

MAJORS: So when families meet us for the first time, they tell us about these wonderful topics. "My child will play with Burt and Ernie for the longest time," but they play by themselves, you know? They don't have friends; they might want to have friends, but they don't know how to form a friendship. They also would like them to learn how to be social.

NARRATOR: A photo shows a girls with CHARGE wearing glasses and a bright pink dress. She is being embraced by a friend — a young woman who also has CHARGE.

MAJORS: I referenced that they can play for a long time with their favorite topics, and because they get into these routines that are soothing for them and fun, such as a play time with Elmo that could go on for hours. Parents will say, "We need to have them stop and move to something else," so we need to actually show them how to interact with their peer. And we can show them by giving them language. We can give them a shared topic of a character, and if you put two CHARGE children together with Elmo, they can play for a long time.

NARRATOR: In the classroom, two boys are interacting and sharing a number of characters and figurines. Their teacher comes over and signs to both of the boys, reminding them that play time will soon end and they'll move on to their next school task.

MAJORS: The essence of this is really to be able to help children become part of a social group by using topics of interest to them. When we figure that out, then we can share with families what they might do at home; we can help families learn how to set up those little social environments within the neighborhood.

Two adolescent boys are decorating terra cotta flower pots. NARRATOR: Sitting next to each other at a table, two adolescent boys are decorating terra cotta flower pots. They are dabbing at the pots with brushes, and in front of them on the table are trays containing a bowl as well as bits of colorful tissue paper to use on the pots.

MAJORS: So that is something that professionals should be aware of in terms of helping children not only learn social skills in school, but how to generalize those social skills to the home and community environment.

NARRATOR: Four young men pose side by side wearing tuxedoes. Behind them is a young woman in a dress. The room they are standing in is decorated with streamers, and other decorations hang from the ceiling. In another photo taken at an outside play area, a young boy with glasses climbs upon a structure that is carved in the shape of a koala bear. His friend stands nearby.

MAJORS: Another thing that parents think of as being very important is for them to be able to participate in a typical school curriculum as much as possible.

NARRATOR: A young girl with long pig tails wearing a hear-patterned turtleneck sits next to a boy in a gray shirt. Across from the students sits a teacher who holds up three fingers and points to the number three on a graphic of a large jar. That jar has three small butterfly stickers attached.

In another photograph, a boy in a green striped sweater sits at a desk which has an easel placed very close by. The boy is attaching pictures of apples to pages that are on the easel, matching the correct amount of apples to the number written on the page.

MAJORS: The factor of how children with CHARGE learn is that if we can figure out the right strategies, these children can learn amazing content. They have a wide range of ability to learn, and it's quite amazing when professionals get into how they function how productive and effective teaching strategies can be.

A young boy writes the number five on the board. NARRATOR: A Venn diagram with overlapping yellow and blue fabric circles is shown mounted on a classroom wall. A boy in a red shirt places large-type word cards into pockets on the diagram.

In another photo, a large chalkboard easel is shown. Five brightly colored plastic koosh balls have been taped across the top of the chalkboard. A young boy uses a piece of blue chalk to write the number five on the board.

MAJORS: Parents typically will say, "In school, I want them to be part of their curriculum. I'm not interested in a model where my child is sitting by themselves with a one-on-one aide; I want my child to be part of some curriculum."

Now, because of the sensory loss, that can be challenging. Sometimes a child with CHARGE Syndrome needs to be in a one-on-one environment in order to learn the content as best they can, but there's may opportunities in a school situation where these children should be included, and parents really want that. They're looking for their children to be in as many normal situations as possible with other children.

NARRATOR: A group of students and teachers appears to be on a field trip to a pond that is surrounded by a variety of lush, green trees and bushes. They stand on a wooden bridge. The teacher is leaning over the railing and directing the students' attention to something in the water.

MAJORS: That model can be very effective once we as educators figure out how to set that up, so essentially, we believe that these children have great capacity to learn. They learn in many different ways; they have many different interests, and it's really our job as professionals to figure out how to apply those interests into a school environment.

CHAPTER 5: Accommodations & Adaptations to Meet the Educational Needs of Children with CHARGE

MAJORS: A very important educational strategy that's used with deaf-blind children across the country and in the world is actually the idea of a calendar system. A calendar system for a child with CHARGE Syndrome can really help them soothe their anxiety related to a transition.

A calendar depicting a weekly schedule for Will. NARRATOR: On a fabric-covered board, we see a calendar depicting a weekly schedule for Will, a student identified by a photo with his name printed on it.

Under the card for each day, an activity is displayed graphically and in print. Monday's activity, grocery shopping, is highlighted by a bright yellow frame around the picture of a shopping cart.

MAJORS: We know that children value activities in their classroom, and when they get highly engaged in a favorite activity, it's really hard for them to stop and move to something else.

NARRATOR: In a photo, a young boy wearing a blue ball cap sits on a running track outside. As a teacher crouches in front of him and shows him pictures and symbols depicting his next scheduled task, the boy looks away distractedly.

MAJORS: So a wonderful way to communicate that with these particular children is to show them their calendar system. "Now you're playing, and now it's time for math," and we can show them this information through a visual system.

NARRATOR: A computer keyboard with large letters on a yellow background is on a desk. Displayed on the monitor nearby is a page titled "Slater's Afternoon." It displays large rectangular boxes noting times and activities planned for the afternoon.

For example, at 1:30 the activity reads, "Story with Ellie." At 2:00, it is time to get ready for a party.

MAJORS: Not only does a calendar system give them information about their whole day, it can be very powerful in a transition. Specifically what we might do is take that object or picture from their calendar system and actually give it to them. so as they're moving from A to B, they have something in their hand that reminds them, "Yes, I'm moving; I'm going someplace else."

A young boy placing symbols in his schedule binder. NARRATOR: In a video clip, a young boy sits at a desk with a binder open in front of him. He is pulling words and symbols off of a slant board and placing them in his schedule binder.

MAJORS: It isn't that they don't want to go, it's really the availability and flexibility that they have in their minds about making the change. They may love swimming but they can't stand up, so the more we can give them — concrete information, maybe a little deep pressure, "It's really okay; you know about swimming. I'm going to help you get there, and I'm going to use your communication strategies to be successful." So in that way, a calendar system can be a really powerful tool for these children.

NARRATOR: We see the same boy as he finishes filling out his schedule for the day. After placing the last two symbols in his binder, he stands up and moves on to his scheduled task.

MAJORS: We know that the fatigue factor for these children is huge. Not are they tired because they haven't slept, they may become very fatigued when they're in an environment where they need to be watching the teacher use sign language, they may be listening because they have a cochlear implant, and their bodies may simply be tired.

NARRATOR: A boy resting in a chair reads an "I Spy" book. His teacher approaches him to ask a question.

TEACHER: Okay, Michael, do you feel ready to start your schedule again, now that you've had a little break? Yes or no?

MAJORS: They can become very fatigued just through use of their eyes. Many of these children don't recognize fatigue, and they can't say to the teacher, "My eyes hurt because they're tired." What they do is they slouch over.

You'll notice with a lot of kids, when they're physically tired, their core strength becomes compromised so they're sitting like this. Their elbows are on the table, their heads are a little bit down. When you look at that presentation, they're missing information. They're not seeing sign language the way it is meant to be seen. They've lost their focus because they're simply fatigued. Those are real signals that we should all be aware of in terms of the teacher or the educator so that we can say, "Maybe we need to revaluate the schedule. Maybe the schedule has too many active threads to it, and we need to interrupt that schedule with a more sedentary activity."

We also may look at that fatigue factor as the child clearly needing a sensory break. We talked earlier about children having a dysregulation state, and a sensory break can really help these children stay more in a calm mode. We talk about this as sort of a mood induction, where when we present an activity to a child, we want to make sure that they have the best focus they can have.

If they can only pay attention to half the lesson, then they're not getting out of that lesson what we would like them to get. So if we can start a lesson where we get this child in sort of neutral calm, there are many strategies that we can use. We can give them a sensory break where they can hold one of those little koosh balls and simply play with it. It sort of gives them a way to relax their system.

NARRATOR: An adolescent girl wearing glasses and a bright pink shirt pounds the desk with her hands. The teacher notices her distress.

GIRL: ( shrieks )

TEACHER: Meghan, Meghan, how is your engine running?

GIRL: Crazy.

TEACHER: It's crazy. What can you do about your engine if it's running crazy?

GIRL: Squeeze a koosh ball.

TEACHER: Well, why don't you look in your cards and pick out what you want to do?

MAJORS: Sometimes children need a five minute break in a bean bag where they have nothing to do but sit.

A dark haired boy reclines on a bean bag chair and turns the pages of a book. NARRATOR: A dark haired boy reclines on a bean bag chair that is near one of the classroom windows. He turns the pages of a book that has large, colorful illustrations.

MAJORS: They can think about their favorite topics, but we won't engage with them so they can really just sort of, as we call it, "chill out" for five minutes.

There's other interventions that can help, especially with younger children: giving them a sensory break on a swing, giving them a five or ten minute opportunity to cuddle up with a blanket and just let them have no input at all.

What we've seen is when we've used those strategies consistently, then childrens' focus and learning actually improves. So there are many questions like that that we need to be asking ourselves when we see a child display those behaviors around fatigue/nonfocus.

The other variable that's pretty obvious to people but we need to ask, "Why is this happening?" is an increase in anxiety and therefore an increase in ritualistic behavior. So as we are, for example, offering a child with CHARGE a new idea in terms of math, you might see their foot is going, they're twirling their hair a little bit more, they're chewing on their pencil.

Those are typical things that children do in school, but these children are doing it because their anxiety is going up. It increases their obsessive need for ritual, and then we've lost them. They can't focus. So to give them a break, to talk about when we can, "Yeah, this is new; it might be a little bit hard for you," to acknowledge that it's challenging and to give them an opportunity to go relax for a few minutes and reintroduce the lesson.

What we know is that when children are in that anxiety state, they're not learning at their best, and we have to understand that this is an internal state and not a cause of something that a teacher might have done. The lesson may produce anxiety, but we cannot actually manage the level of anxiety that that child has internally. We can offer soothing activities within the environment to help them calm down.

NARRATOR: In a video clip, the young girl with the pink shirt who was visibly upset just minutes ago now sits quietly at a desk and writes on a slant board.

MAJORS: Cafeteria is really good example of where you want to assess the auditory accommodation in a cafeteria, or children going from a small classroom where the sound is fairly controlled to the gym where the acoustics change dramatically.

So a child with a cochlear implant is used to the sounds of the classroom, but they go into the hallway and they walk to a gym — particularly in a large school environment, the echoes can be very overwhelming.

You often might see that particular child take their cochlear implant off. We have to be aware of why they're doing that. They might do it naturally. "This is too loud; I don't want to hear it," but we have to be able to help them sometimes cope with those sounds and also give them permission to make their own accommodations.

When they get to an environment that they need to learn in, we also need to assess the acoustics in that environment. I'm not suggesting that we put up curtains in an environment, but we have to be aware of what sounds are going on. If there are other children in the class who have very loud voices, is that sort of a little irritation to the child with CHARGE Syndrome and what are we going to do about that?

A dark haired boy is imitating some of the superheroes depicted on his t-shirt with both sounds and gestures. NARRATOR: A dark haired boy is imitating some of the superheroes depicted on his t-shirt with both sounds and gestures. In the background, a classmate is attempting to finish her worksheet.

MAJORS: We also want to look at visual accommodations. When we have a vision report we focused on the size of the picture, we focused on whether pictures need to be black and white or color, and typically, a low-vision assessment will give very specific recommendations related to font and type of font.

So if we have a report that says, "This child will benefit and actually need a font of 24," that needs to be everywhere. It's just not the classroom teacher that needs to provide that font. The math book needs to be larger print. The homework that goes home can't be simply Xeroxed off the child's workbook, because they're not going to be able to see it. And in addition to the font, it's actually the width of the pencil, so sometimes we'll use a magic marker.

When we send a worksheet home and the contrast with black and white is really subtle, the child can't see it and they'll come back with the homework and it's not done, and mom will say, "Well, they couldn't see it." So we don't want to put ourselves in a situation where we're not making those accommodations every day for that child. Now, does that take time? Absolutely. But is it necessary? Absolutely.

NARRATOR: A boy in a bright Hawaiian print shirt works at a desk. On a slant board in front of him is a worksheet about dimes. The questions are in large, dark print.

MAJORS: There are several examples of visual accommodations that we could look at, but those are sort of the basic functions of accommodations that we think educators should be aware of. They're really important. Without them, we can produce more anxiety, we can produce an outcome of learning that is not as high as that child can actually do. So if we provide them correct accommodations, then they will really be able to learn wonderful things.

NARRATOR: Two classmates share a desk. Both boys smile broadly at the camera as they work on their school assignments.

CHARGE Syndrome: The Impact on Communication & Learning.