Annie, Tommy, Jay, Andreas, Katherine, Becky, Erica, Mark, Greg, Miller, Peter . . . the list is too long and too painful to finish.
These are the names of some of the children who have been rejected by public schools in Canada and the United States. They are black and white, girls and boys, youngsters and teenagers.
In common is their parents' simple dream of having their children accepted and educated in a quality school alongside their peers.
In common is the label disabled pinned on them, like the yellow star pinned on people labeled Jewish, and the pink triangle pinned on people labeled homosexual, during World War II.
The Nuremberg Trials confirmed to the world that pinning yellow stars and pink triangles on people was a crime against humanity. But today, no trials have ruled that IQ scores and disability labels often sentence children to lifelong failure.
We know that special education is neither special nor educational in any sense of the word. The outcome for people labeled disabled is often a life of loneliness, poverty, and joblessness—not an outcome any parents would choose for their son or daughter.
Everywhere we go, people are talking about the “Butwhatabout Kids.” Some of the popular euphemisms include hard to serve and at risk. Why don't we just admit it outright? These are children and teenagers who scare us to death; they make us vulnerable and nervous. That is natural, normal, and human. What is unnatural, abnormal, and inhuman is our systematic “boxing” and subsequent rejection of the people we fear.
When we meet teachers who fear having certain students in their classrooms, we offer alternatives. MAPS (Making Action Plans) is one of those tools that takes responsibility from one person and puts it in the hands of a team that comprises school personnel, family, friends, and the children themselves. (We describe a second practice, Circle of Friends, in “Portrait of Diane” and “Portrait of Norman”.)
It is glib to think that anyone will learn all he or she needs to know about dealing with children with complex needs in one article. But, with consistent use of MAPS (and Circle of Friends), we have found great success in being able to include almost all children in regular classrooms.
Portrait of Diane
Try to imagine a world in which you do not have a single person who truly loves you. Imagine that you see only paid personnel in the morning and at bedtime. Imagine a world where none of your peers speaks or walks. Imagine having no family and no friends.
Recently, we met a young woman who literally had no one in her life. She is 16 and knows no one her own age. Diane had been abandoned by her parents at 4 and placed in a group home for children with severe to profound mental retardation.
As we did her MAP, Diane sat with us and listened intensely to the conversation. We were told that she banged her head and screamed constantly. The Diane we observed sat still for two hours and listened intently. What did she hear? What did she understand? It is our belief that she heard and felt our concern. We believe she responded to that caring by sitting with us for two hours.
It was clear that an intentional Circle of Friends needed to be built immediately. Diane had spent her days in a segregated class in a regular high school. Though she was at the school, no one really knew her.
The school called together a group of teenagers and teachers who expressed an interest in helping Diane.
“How would you feel if your life was like Diane's?” we asked.
One young woman said without hesitation, “I'd commit suicide.” Others said, “I'd sleep all the time.” “I'd take drugs.” “I'd drink.” “I'd kill someone.”
They saw immediately that what Diane needed most was to be with them—to get out of the segregated room. They brainstormed places they could go with Diane. There was a rock concert coming up, and one student volunteered to take Diane with her and her other friends. Another decided to visit Diane and have dinner with her at the group home. The students thought Diane would like the music and cooking classes with their noise and “pretty cool” teachers. The ideas flew. Diane sat through the meeting with a smile as she gently rocked back and forth, back and forth.
Several teachers decided to get involved. Rather than blaming themselves for what they had done in the past, they switched their energy into actions they could deliver in the future.
The result: Diane now has regular visitors to her group home. She has gone out more in 6 months than in the past 10 years, and one teacher and student seem to have formed a special bond with her. They have invited Diane to their homes for dinner and to go on Sunday outings. Best of all, Diane is out of the segregated room and goes to music, cooking, and other regular classes. She hangs out in the lunch room and has stopped poking the corners of her eyes and screaming as much as before. Is Diane “cured”? No! Does she now have people to talk to, things to do, a life to look forward to? Yes!
Equally important, Diane's classmates are getting hands-on experience in problem solving (number one issue in the curriculum) with a real and relevant problem. They have to create curriculum and timetables and troubleshoot with Diane. They are learning to manage teachers, manage behavior, and confront values. Their friendship with Diane may be one of the most important learning activities of their lives. And now Diane has a dream, with a new Circle of Friends as a part of it.
—Marsha Forest and Jack C. Pearpoint
Portrait of Norman
Norman wanted to go to camp, but everywhere he and his family went, they were told that Norman's needs were too great. One young counselor wrote us this letter illustrating the simplicity and complexity of the idea of a Circle of Friends.
We decided Norman could attend our camp. That was a big step in the right direction. I had all the kids together in the recreation hall, and I gave my little speech. “A circle of friends is any support group that helps any camper having problems feel more welcome and included.” I was received with blank stares.
After bombing with this great opening statement, I simply asked the kids to talk about Norman, who they had met that morning. “What do you think Norman can do all day at camp?” Boom! Everyone was talking at once. That was a question 10-year-olds could relate to—it wasn't a lecture on circles.
The meeting lasted about 20 minutes, ending with suggestions about how they could do things together with Norman. I asked for a smaller group of volunteers to help me plan Norman's day. Everyone volunteered.
Norman's biggest challenge and the reason he had been rejected by every other camp in the universe was “weak bladder control.” Several people (adults) had suggested that Norman should sleep in a separate building to “hide” the problem.
I decided (with Norman's permission of course) to put the issue out in the open. The children suggested (quite matter-of-factly) that they take turns waking Norman up in the night to go to the bathroom. It never occurred to them (and they rejected outright) the suggestion that he sleep in another building! The counselors volunteered to take turns helping when needed.
Many baseball games, slumber parties, canoe and splashing trips later, Norman no longer requires a “one-to-one” worker. His bladder problems are getting better (only twice a week instead of every night). Norman's circle of supporters (now a smaller group of real potential friends) meets for an hour every four days. The children and counselors really look forward to it. So does Norman. Norman's circle has become a place for all involved to get support. Last week Norman wasn't even the issue. The topic of the day was Tanya's bad temper.
Finally I should tell you that the social worker called me in shock regarding the progress Norman had made. She asked if we could work on building a circle in his school and in his group home community this fall. I told her I would love to come and help one of the school people become a facilitator. I guess I really learned a lot in the workshop on MAPS and Circles. Norman was my chance to try it out myself. It was the best experience of my career. I'm launched.
As Norman's story illustrates, attitudes are the major barrier to including all students in all activities. But attitudes are no longer an adequate excuse. We must welcome all children now. It is their right.
—Marsha Forest and Jack C. Pearpoint
The MAPS Setting
MAPS is a collaborative process that brings the key actors in a child's life together to create an action plan to be implemented in a regular classroom setting. It is not a case conference or an individual education plan (IEP), but the results can certainly be used on any IEP form.
MAPS is facilitated by two people. School personnel or an external team can act as facilitators, and they need not be familiar with the student or the family. However, they must know the MAPS process inside out, and they must believe 150 percent that full inclusion is possible for all. The facilitators must also be good listeners—able to hear great pain without providing immediate advice and solutions. Their main task is to pull information from the group and move it along into an action plan.
One facilitator acts as the “host.” This person welcomes the group, explains the process, and guides the questions.
The second facilitator is the recorder, creating a record of what the group says with color and graphics on large chart paper. This public record is an essential element of a MAP.
A personal and informal atmosphere is also essential. Before the meeting, the facilitators should set up comfortable chairs in a semicircle. The chart paper and clean markers should be ready along with snacks and colorful name tags.
Eight Key Questions
A MAP is created through eight questions. Each question must be used, but there is no particular order. The facilitators decide on the order depending on the needs of the group. To illustrate how a MAP works, we'll discuss a student named Mark.
Before the questions begin, the facilitator should ask, “Who are you and what is your relationship to Mark?” This sets the collaborative tone for the meeting as participants introduce themselves.
Question 1: What is a map? Participants are asked to think of the characteristics of a map. One recent group answered: “A map shows direction.”“It tells you how to get from one place to another.”“It shows you how to find stuff.”“A map tells you where to go.” The facilitator can then explain: “That's exactly what we're here to do: to show direction for Mark's life, to help him and his family get from one place (the segregated class) to another place (the regular class).”“The MAP will also help us figure out how to find the `stuff' that Mark needs. If we all work together, we can decide where to go next. Together we can create a plan of action that we can put into practice for Mark starting right away.”
Question 2: What is the story? The facilitator can pose this question something like this: “Please tell us your story. What are the most important things that have happened since Mark was born? I know you can go on and on with this, so I'll limit you to 5–7 minutes. Tell us what you feel is really important for all of us to hear and to know about Mark's story.” The facilitator must listen with heart, soul, and body and be careful not to make this a case history. The facilitator must also ask the participants to listen with their hearts: “Don't listen just with your ears. Listen with your whole body. Don't be judgmental. This is not a trial. Try to feel and hear what the person is telling you as if it were your own story.”
We usually ask this question before the dream question, depending on the mood of the group. The recorder represents the story using words and pictures. The recorder also summarizes the story after the family or student has spoken, checking the facts and essential elements of the story. (Making simple errors, especially with names, can be very upsetting to people, so request assistance.)
Question 3: What is your dream? This is really the heart and soul of the MAP. The facilitator must create an atmosphere that helps the family and student feel comfortable about sharing their true dreams, hopes, and wants. The question might be posed like this: “If you could dream the dream you really want, if you could have anything with no holds barred, what do you really truly want for yourselves and for Mark? Money is no object. Don't hold back. Let yourselves be free. Don't ask for what you think you can get. This is different. This is what you really want and dream about or pray for.” There is often a deathly silence at this moment. It is essential. Do not interrupt. Wait. Allow people time to build up their courage to express their feelings and hopes. If this is rushed, the whole MAP may be futile.
When a facilitator asks this question with an honest heart, profound things often happen. In our years of asking this question, parents all over the continent have told us that the MAP empowered them to dream again.
“But,” someone out there is thinking. “Butwhatabout” the student who can't speak? We have done many MAPS with children labeled nonverbal. Although these children don't speak, they certainly communicate. And if the group knows the child well, someone will be able to articulate his or her own dreams for the child and also the dreams he or she thinks the child might have. For example: “If Mark could speak, what do you think his dream would be?”
Families often weep as they tell us, “My dream is that my child be happy, be included in school, walk or ride to school with his sister, be invited to birthday parties, have a hamburger with a friend, and have the phone ring just for him.”
One 12-year-old girl told us, “I want a trip to Hawaii and a job with computers. Also a pet dog.” She was clear as a bell!
One parent of a medically fragile child told us, “I want my child to have one real friend before she dies. My nightmare is that my child will never know friendship.” (This little girl did die soon after, but because she had moved into a district that welcomed her, the mother did get her wish. The entire 3rd grade class attended her daughter's funeral.)
Question 4: What is my/our nightmare? Many people consider the nightmare question the hardest to ask, and we agree. But we believe it is one of the most important because the MAP must identify the nightmare in order to avoid it. Unless the outcome of the plan of action is to prevent the worst from happening, we're just doing busywork.
In 10 years of doing MAPS, we find these are the most consistent responses to the question: “My nightmare is that my child will end up in an institution with no one to love him (or her).” “We will die, and my child will be alone and put in a group home.” “My child will never have a friend.”
No one has ever said “I'm afraid my child will not get an A in math or learn phonics.”
No one has ever said, “I'm afraid there won't be a proper functional curriculum.”
This question often breaks the ice between warring factions. A Kentucky woman broke down describing how her 18-year-old son was currently living out his nightmare, being institutionalized, after having blinded himself. “Our family is in the nightmare,” she wept. “All we wanted, all we want now, is some shred of human kindness and friendship for our son.”
We had to stop for coffee as all participants, both factions, were in tears. For the first time they were meeting as human beings rather than as warriors on opposing sides of a placement review table.
Questions 1 through 4 are Part I of a MAP. It is often necessary to take a break at this point. The second part is lighter, faster-paced, and moves toward the action plan.
MAPS—Part II
Question 5: Who is Mark? This is a brainstorming question. To get started, we like to draw an outline of a person on the chart paper. We hand out sticky notes and ask each person to write one word or phrase that describes the student. We post the notes on the chart paper to give us a snapshot of the student. Mark's snapshot read: curious, handsome, determined, likes good snacks, always hungry, potential, my son, dimples, pretty ordinary, my brother, very active, pest, a little brat, somebody's great friend someday, an interesting boy, lively, likes to play with drums, great family.
We sometimes ask, “What have other people said about Mark in the past? What words have been used before in other meetings?” Mark had been described as: retarded, developmentally delayed, autistic, severely autistic. These words should be posted separately, but the recorder may want to highlight the dramatic differences between the two portraits of the same person.
Question 6: What are Mark's strengths, talents, and unique gifts? What is he good at? Another list is generated: happy, beautiful boy, loving, friendly, he can look you in the eye and smile, gives a lot, he has a “look,” helps to put things in perspective, makes you feel good.
This brainstormed list is important as it gives us many ideas for the curriculum and daily program: Mark likes to throw balls, play with ropes and strings, climb in parks, eat, relax, swim laps in the pool, play in water puddles, go skating, play in clothes closets, and be with people.
By this point we have generated an enormous volume of information on Mark, and it's time to move to an action plan.
Question 7: What does Mark need? What do we need to do to meet these needs? At this MAP the only people present were Mark's mom, dad, teenage sister, and a dedicated teacher/friend. When it came to Mark's needs, there was a real consensus that Mark “needs to be involved and to meet people his own age.” The family needed him to meet other children so his mother could begin to build a life of her own.
Find places where he can meet kids.
Find kids to spend time with him.
Go to the youth center.
Get involved in trips, swimming, and activities.
Develop more communication skills.
When you frame the needs question carefully, it flows directly into an action plan. When planning a curriculum, for example, we might draw the timetable and have the other students brainstorm all the activities that Mark likes and could do. Then we would explore the logistics. If Mark is going to get from history to gym and be dressed in 10 minutes, he will need help—a guide. Who would be willing to help? We link specific people to specific times, places, classes, activities. A concrete action plan, with actual activities to do right away, is crucial. (An additional planning tool, called PATH, uses the information gathered in the MAP to develop a strategic plan of action.)
In this instance, the family enthusiastically agreed to plan a pizza party and invite some neighborhood kids—that weekend. Together with Greg, the teacher/friend, they started to look for someone to take Mark into the community. Greg agreed to facilitate another MAP with a wider group in one month.
As the MAP is concluded, the recorder talks the group through a summary of the charts and presents them to the family as a gift. Other tokens, such as a plant or a cake, are also presented.
Before the meeting ends, the facilitator asks each participant one more question: “Will you give me one word, or a phrase, to sum up your experience of this MAP. Off the top of your head, the first thing that springs to mind ... ” Mark's group answered: Mom: “I'm relieved. Great session.”Dad: “Very positive. Thanks.””Mark: (gives us all a really big smile)Greg: “Fabulous and positive.”
A Kaleidoscope
The MAP is like a kaleidoscope, a mysterious and magical toy that changes constantly. Through the eyepiece we see little bits of beautiful color and light turning together in an everchanging mosaic.
The kaleidoscope picture is like the outcome of each MAP: people work together to make something unique and better happen. The MAP is more than anyone can do alone. It proves what we strongly believe—together we're better!
