To Live, To Love, To Work, To Play: Blending Quality of Life Into the Curriculum

Chapters:

1. Introduction
2. Developing Social Skills
3. Providing Real Choices and Respecting Preferences
4. How Work Contributes to Quality of Life
5. The Value of Play
6. Taking Risks
7. Integrating Quality of Life Into the Curriculum
8. How Do We Measure Success?

CHAPTER 1: Introduction

McLETCHIE: A curriculum is basically what we teach, why we teach, how we teach and most important, what children learn. So a quality of life curriculum for learners who have multiple disabilities and visual impairments, including those who are deafblind, really don't have a good quality of life.

They focus a lot on self-care skills — teaching the child to dress, to go to the toilet. And that is basically their curriculum. Not that those areas are not important to learn to be independent as possible, but there's not much joie de vivre, joy of life, within many of the curricula.

NARRATOR: In a video clip, a teacher is shown working with a girl who is blind on the girl's tangible symbol calendar. Among the activities on her schedule are bathroom and meeting.

TEACHER: And then you have meeting.

ZATTA: And it's something that people don't typically think about when they're developing curriculum or planning for instruction for this group of children. That where you get so focused sometimes on teaching the skills that we forget to go back and ask the questions, you know, what are we teaching, why are we teaching it, what is the child learning? And how does it affect this to live, to love, to work, to play?

CHAPTER 2: Developing Social Skills

ZATTA: Today, you know, we want to focus on the social skills aspect because this is the area that teachers find to be the most difficult to teach. That teaching daily living skills, or math skills, or reading skills they're a little more clear as to how to approach that instruction. But in terms of social skills, it's something that — it's not something that we think about teaching because for most of us, we just learned those skills naturally through observing others and figuring out, you know, what works and doesn't work in a social situation. And with this group of students, we have to specifically teach them, but we don't have the experience of having been taught those skills. So we really have to step back and think very carefully about how does that happen?

NARRATOR: In a video clip, a group of moms and their pre-school-aged children are meeting at Perkins. The children, who are blind, visually impaired or multiply disabled, sit supported in laps or in wheelchairs while a song is sung greeting each child in turn.

- ♪ And Bingo was his name-o ♪ (claps) ♪ I-N-G-O ♪

McLETCHIE:It's easy to teach a child who has no motor problems how to brush his teeth. Because you can task analyze all of the steps. And you go through and you teach it step by step. Sometimes you start at the end and work backwards, sometimes you start at the beginning. But how do we task analyze in making a friend?

And honestly, you know, we both agreed that when you have one on one — one adult to one child — that's good. But then it's a barrier to the other children who are in the group. So we try and teach people — think group. How can you group these kids together? Let them make a choice who they want to sit next to. And carefully observe and record whom they like.

NARRATOR: In a video clip, students from Perkins are gathering for a school assembly. A group of boys who have chosen to sit together talk and laugh amongst themselves. (laughs)

McLETCHIE: You know, with us, we have lots of friends. I'm blessed to have a good friend. And we do, we have lots of friends and that having friends is real quality of life. That's what makes us happy. And happiness is a quality of life outcome. So we have friends for children who have multiple disabilities and visual impairments. They have their family relationships, yes, some are very strong and loving. Most, I would say. But when you look at the relationships they have with other people, they're all paid to work with them. And so it's not a real relationship, a real friendship.

ZATTA: Yeah, I think that, you know, it's important for teachers and other caregivers to recognize that they are paid professionals. And that it's their job to be working with the child. And it's that, in a sense, as close as we've become to our students, which in fact is impossible not to when you're working so intimately with kids with these significant needs, but we have to recognize that we're not their friends, that we have a different role. And our role is an important role, but they also need friends. And that part of our job is to figure out how can we facilitate friendships.

NARRATOR: In a photograph, three teenage students from Perkins who share an interest in animals are shown working together at a farm to unload bales of hay from the back of a truck. Next, we see the students preparing to deliver the bales, which are now in wheelbarrows to horses and other animals.

ZATTA: We're all interdependent, you know. And we... I can't get through my day without all the other people that I work with or live with that I rely on to do that, you know, those other parts of the tasks, if you will. And yet we focus on making children independent, but we don't focus enough on the interdependence.

McLETCHIE: It's exposure, exposure, exposure.

How do you expose proximity? I've worked with very physically disabled kids who are visually impaired. The first time we go into a classroom, one's in one corner, one's in another corner, one's in another corner. So they're already isolated. But we have to make them not physically isolated. And you notice when you do that, that eventually they get — they're aware of a person next to them, and then they begin — if they have the motor control — to reach out to that person.

So a lot of it is physical proximity. Finding what the child's interests are, their preferences. And if two kids have the same preference, they can do it together, they don't have to do it alone.

Assess where the kids are. Is there a way that they can get together? Teacher will be spending 20 minutes one on one with a child, and the rest of them are doing nothing. So to get them to think group, how can I teach four kids and maybe I'm focusing on one, but the other three might just get something by exposure, exposure, exposure.

CHAPTER 3: Providing Real Choices and Respecting Preferences

McLETCHIE: Until about 25 years ago — I'm dating myself — we were teaching children to make choices. Like do you want to eat, do you want to drink, right? And those were the choices that were at lunch time. And what happened was we found a lot of kids, they said they could not make those choices.

Well, they didn't like to eat or drink to start with. So it's like a quality curriculum to give quality choices to children. And it was always before in the old days, before your time, that there were only two choices: you want this or this? And they were things.

But do you want Mary or Gary? So to make the choices with people, and if you could make clear choices between two people, why not three? So the world, our real role, is to make the world bigger and bigger and bigger. And it's not from the classroom to the community always. It's like I know you, I know you, and it just expands the child's world. And motivating for them to communicate.

NARRATOR: In a series of photographs, we see first a class for students who are visually impaired and multiply disabled. Their teachers have assigned the task of preparing a shopping list.

And we see one young man with thick glasses looking at a small whiteboard with a list of items written in large print. Among the items: chocolate ice cream and milk.

Finally, we see the same boy at the supermarket pushing a cart. He and one of the teachers consult the list they prepared before searching for the items.

ZATTA: You have to be a good observer. And you really want to pay attention to what the student... you know, how... what their reaction is with other children. And are there some children that they seem to be gravitating towards in some way? Whether it's physically, you know, moving their body in a certain way.

Or because they out and out and say, "Oh, I really like, you know, spending time with Tommy." And also, at the same time, pay attention to things that they don't like. There may be kids that really bother them. Maybe their voice has a certain tone and it's irritating, or who knows, you know. But you got to give them that because we all have people that we don't like.

NARRATOR: We see a photograph of two teenage girls sitting on the floor of a school in India.

The girls, who wear identical uniforms of long red and white checked tunics over red pants, smile at the camera. One pulls her friend close with an arm around the shoulder.

ZATTA: I think we start with these concepts of to live, to love, to work, to play.

So to live, you know, that can be many things. Children have a range of abilities. And it may be learning how to dress yourself, learning how to feed yourself and make choices of what kind of toothpaste you like.

On the other end of the spectrum, it could be choosing an apartment or choosing a roommate, choosing what restaurant to go to. There's a wide range. But having that ability, you know, and to recognize that for all of us, we want to have some ability to decide what we do with our living situations.

CHAPTER 4: How Work Contributes to Quality of Life

McLETCHIE: Work, again, with the quality of life curriculum we take a very simplistic and flexible view. For a little child, work might be taking the toys off the shelf, playing with the toys, putting them back. That's their responsibility. For another child, and it happens often here at Perkins on Valentine's Day, some of the older kids deliver flowers to different people in the building, which is a nice thing to do. But work begins at a very early age. And it continues through our lives.

NARRATOR: A young boy who is visually impaired and wears glasses is shown lying on the floor next to his teacher while they read a book with tactile graphics. After reading is over, he is asked to put the books back where he found them, which he does.

McLETCHIE: And the simple work that I talked about makes at the very beginning when we're working with young children with MDVI. Even if we have to wheel them in the wheelchair to the toy shelf to get the toy off, they play with it and then take it back. Those things make the child feel proud. It builds self esteem.

And, again, for socialization, we can have two children doing a chore together. It doesn't have to be one child delivering the flowers on Valentine's Day. Take two, take three in the building. So again it promotes socialization.

ZATTA: Looking at what students are successful at, what they seem to enjoy, what their preferences are, what things they really don't like doing. You know, if you have a student who no matter what, can't stand getting their hands dirty, then they probably shouldn't work in a greenhouse.

So, you know, using all of that information is critical. And it's important to, you know, all of us that we feel good about what we do. We have a sense of accomplishment, that we have contributed to the world around us. And it's the same, it's the same for our students. It's important for them to be able to have that feeling of self-worth.

McLETCHIE: For the students with multiple disabilities, it's a sense of meeting other people, enjoying what you do and building, "I feel good about myself. "I wasn't home alone all day. "I went to a place where I know the people and it makes me happy."

NARRATOR: In a video clip, we see a young boy with CHARGE syndrome preparing for his shift at a local market. The boy, who wears glasses and hearing aids greets one of his co-workers with a high-five.

ZATTA: And it's funny because quite a number of years ago it became quite apparent we had taught kids really great work skills and they understood the task, and coming in, and sit down and do this task. And but what we learned after they left school and went on into the work environment that they didn't have appropriate taking break skills. And that was a problem, you know.

And so we learned that we had to actually teach that, of course, which is sort of like, oh, light dawns, you know. And so, you know, have to teach kids to make — how are you going to use your free time, and what are you going to — you know, you're going to have something to eat, are you going to read a magazine? You're going to play cards? You're going to do something with somebody else? You know, sharing the space and cleaning up after yourself, all of those components of taking a break that are very important in order to be successful.

CHAPTER 5: The Value of Play

ZATTA: Play is so important. And, you know, if you ask any of us, you know, what do you enjoy doing in your free time, we'll give you a list of things that we like doing. Some of those things are with other people, and some of those things are just, you know, by ourselves. I enjoy reading. That's something I'll do by myself. But I enjoy going to the beach, so I'm going to do that with my family and friends.

So it's... and it's something if you asked any of us, "Well, how did you learn what you like to do for play?" We would all kind of scratch our heads and say, "What do you mean how did I learn that?" But, in fact, it just happened naturally. And for our students who don't have the... again, the exposure, the experience of the world, they have to be taught or exposed, learn about all the different options that there are and then make choices from that. So, again, it goes back to choice making. But you have to know what the choices are to make that choice.

NARRATOR: We observe two young girls who are multiply disabled and visually impaired. One of the girls chooses to play with a musical toy, and is encouraged to share it with her friend.

McLETCHIE: So many children with MDVI are put on the floor with a toy, or if they're older, given something to listen — what do you call those things, iPods, or whatever — to listen to music. And they're isolated. So, again, we want to facilitate at least two people together playing or enjoying something together. And it comes back again to relationships. If I have a toy and I share it with you, we have to take turns. So the taking turns is a whole critical strategy in terms of forming relationships.

CHAPTER 6: Taking Risks

ZATTA: Risk is definitely a part of play because you have to explore and you have to sometimes try something that you're not sure how it's going to come out, but you learn from it. You know, you have the experience and then the memory develops and you make a decision in the future, "Do I want to do that again or maybe not?"

NARRATOR: We see a clip of a student who is visually impaired and multiply disabled taking part in a physical therapy session with other classmates.

The boy has chosen to use a pair of short stilts that have wide plastic bases about four or five inches tall. The student grasps metal canes that are attached to the bases.

McLETCHIE:It's like the dignity of risk isn't it? We all like to take risks. It's a little bit exhilarating. And, you know, within certain parameters we're not going to let somebody jump out of a window.

But, you know, you need to fall to know how to get up. You need to know that if you're walking up the slide backwards that it's not so easy to turn around to go down again.

So let them make some mistakes because most of what I've learned in life is I would do it differently, I've learned from my mistakes.

CHAPTER 7: Integrating Quality of Life Into the Curriculum

ZATTA: It isn't about, you know, another thing to do. It's not about, okay, I've got to follow another curriculum now. It's about embedding these ideas within what you already are doing. And that, in fact, you, you know, are covering so much of this already, but maybe aren't recognizing and maybe not maximizing the potential that the activities have.

So we have — you know, there's an example that we like to use when we're traveling to other countries and we'll use this as an activity for teachers who are working in small groups. And we'll say, "Okay, you're, you know, going to your class "on Monday and you're going to tell your students "that there's a party on Thursday. "And what are you going to do as the teacher "to help your students prepare for this party — "a birthday party for Gary."And so how will you help them prepare for this? "Because you know that at least some of the students "don't really have the idea of a birthday party. And so, you know, what will you do?"

And then we send the teachers off in groups and they will plan. And what we hope that they'll come back with is ideas of all the different components of what's involved in getting ready for a birthday party. There's the making of a card, there's making a cake. And in order to make a cake you need to go to the grocery store and buy the ingredients. And maybe you need to buy candles. And, you know, and how do you prepare for those activities? Do you need to use the objects of the candles in the cake box or pictures and words?

NARRATOR: In a photograph we see a cake box on a table. In front of the box are four tangible symbol cards with pictures of some eggs, a measuring cup with water, birthday candles and a cake.

ZATTA: You know, and how are you going to structure that activity? So we go back again to curriculum. What is taught, why is it taught, how is it taught and what has the student learned?

So if we look at this birthday party activity, so why are we teaching about birthday parties? Well, they are part of life. We all have birthdays, or a great social occasion. They are, you know, something happens annually for each of us and then for our friends. So we want to talk about what is the concept of a birthday party.

So why... so there's the why, what's the content? What is being taught is the content. So we're talking about, well, the idea that, you know, Gary's having a birthday and he's going to be 12 years old this year. And what do we have at birthdays? We have cake and maybe we have ice cream and there are presents and balloons, so this is the content we want to teach. And there's people at a table, and so forth.

McLETCHIE: In every country, whether it's the United States or Thailand or Indonesia, there is now this move to have children with significant disabilities and visual impairment. The teachers need to prove that they're addressing the regular curriculum that regular students without disabilities deal with.

So if we look at the basic areas of a regular curriculum, literacy, the birthday party, they're beginning to use pictures or they're using objects, which are pre-reading.

For other students they're being exposed to the print with the object matched to it. So yeah, we're addressing literacy.

Math — how many eggs do you put in the cake mix? You know, how much water is in a cup? The whole concept of measuring comes in with the math. And how many kids are coming to the party? And so they begin counting in a functional way.

And then if we look again at science, cake mix is dry, you add the eggs and the water and it becomes wet. You put it in the oven and it becomes warm and it changes the texture and it rises.

NARRATOR: We see in a photograph a young boy who is blind carrying a cupcake pan filled with batter. His mother is helping the boy to deliver the pan to the oven.

McLETCHIE:And social studies. Social studies is really about learning about the world beyond you. Now remember, many of these kids have a very small world. So social studies is different places in the community, different places in the school.

They go to the kitchen to cook. But before they cook they have to go out to the supermarket and buy the ingredients for the cake.

So they begin to learn about an expanded environment. And that's basically what social studies is, to learn about their communities.

CHAPTER 8: How Do We Measure Success?

ZATTA: I think it's empowering the children, the students, to live, you know, to make the choices in their lives that make them happy and make them feel fulfilled because that's what we all want, right? So it's really about meeting them at their level and assessing their interests, their likes, their strengths and then helping them develop the skills to make those choices, either on a basic level or on a more complex level, whichever is appropriate for that student.

NARRATOR: A young boy with CHARGE syndrome is seen smiling while hugging a large dog in the offices of an animal shelter where he works.

We see another photo of the boy with a stack of metal food bowls that he has just washed in preparation for feeding time.

ZATTA: We have to think about that with everything we do. We have to think about how is this activity important for the future for the student? And if we can't answer that as teachers, we need to rethink the activity. Because everything needs to have a purpose. We don't have any time to waste working with these children. There's too much to learn, to be taught. We don't have time to waste doing... if we can't say, "The reason to learn this is because it will make this happen for the future."

NARRATOR: A young man who is blind is shown working at the counter of a cafe on the Perkins campus. The boy's job requires him to engage socially with the customers, fill their orders, collect money and make change.

McLETCHIE: And make the child more happy with the present. More engaged with people. More engaged with taking care of themselves. And more engaged in feeling proud because they can help clean up the classroom or deliver Valentines with a friend to other classrooms. The kids feel better about themselves. And that is quality of life.

NARRATOR: For more information, please visit: perkinselearning.org.