CHARGE Syndrome: Preparing for the World of Work

Chapters:

1. Introduction
2. The Value of Work
3. Considering Strengths and Preferences
4. Behavioral Implications
5. Physical Considerations
6. Communication and Collaboration
7. Defining Success

CHAPTER 1: Introduction

BRIDGEO: Federal law mandates that we start the transition process by the time a student turns 16. But with students with disabilities, and especially those with CHARGE syndrome, it really is essential that we start that process a lot earlier.

Our students are not exposed, and don't have the opportunities, often, that normal adolescents do, given all the complications that they've had early on in life, and there have been a lot of other issues that have really needed to be dealt with, whether it's medical issues, whether it's behavioral issues, even some of the educational part. So for our students, if we can start developing social skills, hand skills, mobility skills, and start with that at a lot earlier age, by the time I get them, which may be 14, 16, I already have a student that's ready.

NARRATOR: In a photograph, we see a teenage boy with CHARGE restocking the sugar dispenser racks at a hospital cafeteria. The boy wears a red jacket that identifies him as a worker at the hospital. His headband style hearing aid is clearly visible.

BRIDGEO: So you're always looking sort of at the end in sight, no matter what age they come in. And often with our students, we start looking at them vocationally at around age 14. Does it mean that all kids start at age 14? Absolutely not. A lot of our students may have to start earlier. And when they do start earlier, it's because academics may not be totally in the forefront. But we can still take some of those academics functionally and apply them into situations that are meaningful to them. And by taking it meaningful to them they have a reason to understand what they are doing and why they are doing it.

NARRATOR:A young girl sits at a desk and counts one dollar bills. In front of her is a template with the numbers one through five written across the top of five vertical columns. The girl places one bill in each column, and then gathers the bills into stacks of five.

BRIDGEO: So if we start with them at a younger age, at 14 or 16, start really looking at what their interests may be, what their strengths are, what are their capabilities, and looking at, when it gets time for them to graduate, to become an adult and enter into our adult world, what is the best way, and how can we help them gain a meaningful, purposeful life that we all strive to have?

CHAPTER 2: The Value of Work

BRIDGEO: When we think also about our students working, not all work or jobs are based on the value of money. And not in that traditional sense. So with our students, we also have to think there is no specific prerequisites that will tell you what a job has to be and how you have to do it. I think we have to look back at what is meaningful to them and how can they gain value, whether it's through self esteem or positive reinforcement, or just the social aspect of coming to work.

NARRATOR: In a video clip, a teenage boy with CHARGE is greeted warmly by a coworker in the back room of a market where they work. Both are wearing hairnets and green aprons.

BRIDGEO: The benefit is really looking at what is the value of work. We all value work, something that has a purpose, a reason, and something that is meaningful. We get up every morning, we get ready, we get dressed, we go to work, we go socialize, we see our friends. We meet people at the bus, we meet people at the coffee shop. That's no different than what they can do. And they can get up.

Our students, whether they're deaf-blind, deaf-blind students with CHARGE syndrome, they're aware, much more aware of what goes on day to day. And they see whether it's us go to work, see their peers go to work, see family members go out and go to work. And I think it's really our job to really look at how we can help them have a life that's meaningful. And meaningful can be in any way.

Does it have to be a regular job, nine to five? Not necessarily. Can it be going out, volunteering, going maybe to take the mail for somebody, taking it to the post office? But having something to do that has a function that they can take on with them and feel good about themselves.

NARRATOR: A teenage girl with CHARGE wearing a bright red coat passes by the security information desk located in a building on a college campus. She pushes a cart which she will use as part of her job to collect bags of recyclables.

BRIDGEO: When our students go out to work, and it is a process, you take them and involve them in every aspect of work. If that means they go out to the car and they learn how to open the car door themselves, they learn how to put a seat belt on, that is just as valuable as it is going to a company and doing the actual job. So we have to look at all aspects of it. So for our students, whether they're deaf-blind, or maybe they have further implications — they may be CHARGE, have that CHARGE component to them, it doesn't really matter.

We're going to help them through all those steps. So when we get up and we go to work, we get dressed for work. So there's the mobility aspect. When we get to work, when we go through the door, we usually greet people. We say "Hi". We learn how to hang up our coat. We go to our desk. All those things that we do that we take for granted, our students need to learn. And the way our students can learn is they need practice. They need repetition.

TEACHER: Can you hang it, please, right here?

NARRATOR: An adolescent girl with CHARGE arrives to begin her job at the Perkins student store. Her teacher prompts her to hang up her coat on a hook. A few minutes later, the teacher reminds her to put on her apron before going in to work.

CHAPTER 3: Considering Strengths and Preferences

BRIDGEO: So all the jobs that we're thinking about doing or trying to with our students, we really want to showcase their talents. We want to look at what their strengths are. What are their interests? Ultimately we want them to have a successful work opportunity. We need to help them, because they can't always come out and tell us. And through observation of how they're approaching a task, doing it, and what the environment may look like. Maybe it might be a specific peer that they work well with. Maybe it's just a setting. Their parents work in an office setting, and they go there, and they've helped out before.

Maybe that's something they're comfortable with. So I think we really need to look at the jobs that are out there, but we're not going to take a traditional job for our student. We're going to break it down, and we're going to constantly assess it, and carve situations that are going to work for them.

NARRATOR: We see a photograph of a girl with CHARGE sitting at a table. A wooden box sits on the table in front of her. Her job is to stack quarters into the plastic sleeve that has been inserted into a hole on the top of the box.

Another photo shows two boys with CHARGE sitting on opposite sides of a plastic crate filled with pine cones. Their job is to wrap a thin green wire around each pine cone for use in decorating holiday baskets and wreaths.

BRIDGEO: We call it situational assessment. So I'm constantly looking at environment and assessing what kind of jobs our student may do. Now, for that employer, his employees may be able to complete these jobs within 30 minutes. And there may be an assignment of maybe five, six, seven, eight jobs. For our students, I can come in and say, "Hey, we can do that. Give us a chance." And it may be something as simple as in a hospital setting, and you're filling up the forks and the spoons and the ketchups and the sugars.

All those jobs that really aren't that much, but for our student the idea of breaking that job down, carving a job so it's a piece of somebody else's job in the community, taking that or breaking that down for them, and allowing them to go get the box of ketchup in the back and bring it out, open it, fill up the container, and know when the container's full. Or maybe you take that job, and they may have a communication card, and they go to an employee, a peer of theirs, and go and ask for help — "I need the box of ketchup." And they go get it, and they bring it out. But maybe all those jobs, for our students, they have meaning. They can see as they're doing it it's getting done.

TEACHER: This side. Go ahead.

NARRATOR: We see video of a young boy taking a box of condiment packages from a storeroom and bringing them into a hospital cafeteria. The boy then refills containers on the dispensing table.

BRIDGEO: People might be coming by to get ketchup, to get sugar, to get forks and spoons, and they see value of it. So I think any time we're taking our students to work there is always something they can do. Now, in that kind of situation, that's pretty easy to do. For some of our students, an employer might approach us with another kind of job, and our students may not be able to do it. But again, as I said, we think of it with a high expectation. So we may help them.

We may do the job together through partial participation, including that student in the process of doing that job, and with repetition over time they're going to be about to do it, or they are going to learn it. For example, we have a student, Kelly, and one of the things that she really liked to do was be up and moving, and we needed to build on that strength of hers. She was not a student that could sit for very long periods of time. So what we started on with her, within our school environment, was what we call a real job.

And a real job is a job that really happens in the community, but she needs practice. She needs time to learn how to do it. And it was a recycling room. So she had a barrel, she learned how to push. She could learn how to push it with two hands, go up ramps, down ramps, not let go of the barrel, but hang on to it. Go through a doorway. Open the door, lift the barrel up over the lip of the entrance, and go in. And as she was learning to do this job, staff worked with her, as I said, through partial participation, and helped her with it. So they did it together.

TEACHER: Hey, good.

NARRATOR: A teenage girl with CHARGE works with a teacher as they collect the contents of recycling bins. The girl needs some assistance and prompting to get the bags into a pushcart.

BRIDGEO: If it was cans and bottles that you were recycling, going and locating the recyling bin that's full, and pulling out the plastic bag full of cans and bottles and putting it in her barrel, and then getting a plastic bag and tearing it apart from the roll, and opening it up. And I emphasize these points because if you really had looked at back where Kelly was, no one would have really thought Kelly could do this. But given the time, the repetition, and the ability to practice it over several years, and some extensive roots, Kelly now is quite independent with that.

And surprisingly, staff can step back and watch her be able to manipulate the barrel, the door, and all those things that we can do so easy. So again, I think, we are looking at what Kelly was good at. And for what she was good at, how can we improve her skills and make her so that she really could participate and take that job or something similar to that out into the community when she became an adult?

NARRATOR: We see a video clip of a girl deposting the bag she has collected into a large blue barrel.

BRIDGEO: Katie, for example, was one student for whom change was not easy. She liked her schedule to be the same all the time. We really needed to plan out and really think about what her transition was going to look like, and think of what kind of opportunities we could give her to try out. Katie also, as she was thinking about work, really didn't have a lot of exposure. So we were planning out and talking with her what she might do, and really giving her specific examples of what things might be.

And using school to give her little trials to see what it was. And as she became more comfortable and gained that trust of her teacher or her job coach, and sort of explained to her what was going to happen, why it was going to happen, she came a little bit more open to some of the suggestions. For example, we needed to really look at environments for her that were quiet, that there wasn't a lot of activity going on. Jobs that she could sit at. Her ability to stand, to really work for extended periods of time, she was not there yet. So we needed to really build on success for her.

NARRATOR: Three students with CHARGE sit at a table in an office setting. One of the students, a teenage girl wearing a purple sweater vest, runs envelopes that she and the others have been stuffing through a postage meter. She checks each envelope to make sure it has been stamped correctly. If not, she runs it through the meter again.

BRIDGEO: The other thing we also had to use was peers that were there. She needed to know who was there, and hear from them. And so again, as we talked about, sort of looking at who are the people that they see that come and go in their life, and building that trust in that relationship, and allowing to use that information as a way to help her with the transition to this new placement.

CHAPTER 4: Behavioral Implications

BRIDGEO: Children with CHARGE of any age are going to be challenged by obsessive-compulsive disorder, OCD, or anxiety disorder. How this interferes with them would be how the work gets done, maybe changes in the environment, as well as their acceptance or their ability to work with the materials that are presented to them.

NARRATOR: In a video clip, two students with CHARGE sit side by side at a high counter in the back room of a market. Their job is to fill containers with trail mix or candy, and they must tolerate wearing plastic gloves and hairnets. At one point, one of the students turns to the camera and smiles.

BRIDGEO: For example, when we look at how a job gets done, a person with OCD may want to take full control of that job. We, as the teacher or the job coach, need to stand back and look. Is the job getting done, and fulfilling the need of that employer, or do we need to make that change? And we need to weigh that out. And maybe later on is when we really look at organization and the efficiency of the job, but allow that student to have control of it.

NARRATOR: We see a young girl with CHARGE sitting at a table in the Perkins student store. She places packages of cookies somewhat haphazardly into a dispenser. A teacher occasionally rearranges the packages so that the container can be filled to capacity.

TEACHER: Great work.

BRIDGEO: When out on the job sites, we are not always allowed to control what our job responsibilities are going to be. So we get out there with a student to work. And we need to make adjustments. As we can't always change our materials, how are you going to accept what you're given to do?

For example, one day part of our job at a clerical task was to collate various materials into an envelope along with a green pencil. She doesn't like the color green. So to have to work with a green pencil, it sounds minor to us, but for her, it was a big deal. But we looked on that pencil, and on the pencil was a Perkins logo. It was a Perkins pencil. So we helped her look at it that it's not a green pencil anymore, it's a Perkins pencil. As she was continuing to work that day, and was given sheets of labels because she needed to label the fronts of the envelopes, she also has a hard time working with odd numbers.

NARRATOR: A teenage girl with CHARGE is seen stuffing envelopes and placing mailing labels on them in preparation for mailing.

BRIDGEO: Everything has to end in an even number. And when work was over, and it was time to go, it was ending on an odd number. And she had a choice. We could either look at it as an odd number, she could continue to do a little bit more, she could finish out her label sheet. But she needs to make a choice to decide what is going to be comfortable for her. And at that moment, it wasn't up to me to say, "It is time to go, we need to go now." She needed to have control of that situation, and end it on a point that she could be comfortable with.

NARRATOR: We then see the girl holding a stack of envelopes as she stands and walks away from the table.

BRIDGEO: For one of our students, we had tried out multiple placements for him. And in those placements, one of the things that was challenging for us was to keep him busy. There was never enough work for him to do. And we were always looking. And he'd be looking at a peer, and want to do their work. because they were working at a slower pace. And we had this environment where it was a wholesale greenhouse, where we could work in several factors for him.

He wants to be busy, he wants to be on his feet. He has that need to keep working, working, working. And within this environment, there was repetition all the time. So he could go in and fill pot after pot after pot. And we could even finish work, and there would still be plenty of work for him.

NARRATOR: In a photograph, we see two teenaged boys with CHARGE working inside a greenhouse. One of the boys, wearing a bright green t-shirt, repots a plant. There are several dozen plants on the table behind him, which will also need repotting.

BRIDGEO: And that made it easier for John every week as he went to work, because he knew what that expectation was, he knew that he was going to have a lot of work to do, more than enough. And for this individual, and in this environment, this was a good match, because it helped his OCD and his anxiety, he could relax, because he knew he didn't have to worry, that his time was going to be filled, he was going to be productive, and he was going to have more than enough work than he ever wanted.

CHAPTER 5: Physical Considerations

BRIDGEO: Vision can vary from student to student, especially those with CHARGE. But their vision, also add that to it, can contribute to other factors that may significantly make it harder for them to learn. Students with CHARGE, along with their vision, may have a hearing impairment. They may have some sensory issues, as well as balance. Balance can be very difficult for some of our students—the ability to stand, to wait for long periods of time, just to be able to sit up in a chair and hold their body up.

Often many of our students with CHARGE appear to be leaning over, or they're doing table work, and they've got their arms down and their heads down. Well, for our students, the ability to be able to sit in a chair may be a challenge, and it may need to have armrests on it. To be able to sit up straight, to allow their hands to be free and their arms to be free to do their job, takes a lot of work.

And we need to be aware of that, with any kind of work opportunity that we're giving to them, that they're really putting in all that effort just to hold their body up, to then be able to do the task that we've asked them to do. For example, Katie, when she first started to work, it was really important to really look at the environment.

NARRATOR: We see an adolescent girl with CHARGE at her work station in the back room of a market. She is filling plastic containers with candy while other work goes on nearby. We can also hear a radio playing loudly.

BRIDGEO: We then propose the idea to her that she go to work in this small little business. It is a small business, but for Katie, it is very loud. It is a large warehouse with a lot of traffic, a lot of noise, a lot of machines going on, a freight elevator right next to where she is working, and an environment that really requires you to stand. Her job responsibility was to fill containers with dried fruits, nuts, candies. Sounds really easy. But given all those other factors with her, we needed to keep in mind her vision, her hearing impairment, her balance, and her sensory issues — all those are going to impact her for work.

NARRATOR: The young girl and a fellow student with CHARGE weigh the containers they have just filled on a scale and place a price label on each one. The containers are then put into a shopping cart for delivery to the store shelves.

BRIDGEO: We decided we also needed to make some accommodations for her. One, the job does call for you to stand. And we were able to go out and purchase a chair and bring it in and set it up in an office. So now we go and get a chair, because for her to stand was going to be hard. And to be able to work off that counter was going to be difficult, to hold her body up, and also do the task.

We also brought a radio in. The radio is quite loud, and it's on her favorite station. And there are still times when it is still extremely noisy. But Katie was willing and open to try this. And I must say, there are times when the sensory overload is just too much for her to handle, and she'll take her hearing aids off, and her glasses off. The other issue that we also had to look at was the lighting. Lighting is very dim in there. But part of one of the things that you do when you're working with a student is you present the job to them. And then you stand back and you watch. And you watch and see how they do it. And you watch their approach. And by watching her approach, I would move things around to make it easier.

CHAPTER 6: Communication and Collaboration

BRIDGEO: For our CHARGE students, and really for any student with a disability, there's a lot of collaboration. There's a lot of team members. And I think we need to use all those team members, whether it's through the IEP, and you have your team meetings involving the family members, the student if possible. And I think we need to all collaborate on what the successes are, what their strengths are, and even, how do they see themselves?

Maybe the student can give you that information. What would they like to do down the road? Maybe the family has a vision. And I think we need to start that process and all talk together and look at all that information so that we can make their transition more applicable for them and more appropriate for them once they turn into the adult community.

NARRATOR: A group of students with CHARGE enters a hospital lobby on their way to work in the cafeteria. A woman behind the main desk addresses many of them by name and shakes their hands as the group passes by. Later we see some of the students putting on lanyards which display their hospital ID cards and photos.

BRIDGEO: Another example to really help with their transition process is the development of a portfolio. The portfolio can be geared solely towards transition, or it can also be geared towards employment. The development of a portfolio is going to be a visual summary of what the student has done through the use of pictures displaying what their skills are, what an environment may look like, maybe a task analysis of how a job is broken down.

NARRATOR: We see a page from the vocations portfolio of a teenaged boy with CHARGE. Two photographs show boys in chef's hats measuring and mixing ingredients. The text on the page describes the responsibilities, which is to make homemade doggie treats.

BRIDGEO: The portfolio is going to be used as a bridge towards their transition. It allows the student to be involved, and there's various ways, whether it's just picking out pictures, whether it's helping to write part of the portfolio through a career ed class, it's going to allow the families to really get a better understanding of what their child is doing and how they're doing it. It's going to help the families advocate for their child, as well as for adult agencies to really see what the student can do.

Ultimately the portfolio is a visual resume. The book or the portfolio can be used. We've taken them to job placements. So you can take it right there, show an employer what they can do, how they can do it. We've had students also take these portfolios and bring them to their IEP meetings, because it's all about me, I want to talk about me. And it's a way that they can participate and contribute in their meetings.

CHAPTER 7: Defining Success

BRIDGEO: Success. Success at work, success every day. I think for our students, success can be measured. One is just looking at the students as they go to work, looking at them when they're there at work doing something. It's meaningful to them. They like it.

NARRATOR: In a video clip, a young woman with CHARGE stands by an industrial sink and fills a plastic bottle with cleaning solution. Later, we see her out in the cafeteria of a hospital, cleaning the tables.

BRIDGEO: They may be smiling, they may not be smiling. They see somebody come by, and they stop, and they share an experience through showing their name badge and comparing it with theirs, to say, "He's got a tie on. I wear a tie on Thursdays when I go to the bank." That's what success is all about.

NARRATOR: A young woman with CHARGE sits at a table and places a few quarters on a card. The money is part of the pay she received for emptying recycling bins in the building. A closer shot of the card reveals symbols of beads and the writing, "I want to buy beads." We then see her choosing a necklace of pink beads from a bag.

BRIDGEO: You can't measure work. There's no value in work, especially as far as money goes. And for our students, they do learn the value of money, and they do understand, "I may work, I get my paycheck, or I may get money right after work." But if you really look at them, they're happy doing something that's meaningful, that's purposeful, and being able to talk about it with others. I don't think there's any more measure to, really, what success is.