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Helping People with Developmental Disabilities Mourn

Practical Rituals for Caregivers

Center for Loss and Life Transition

Ritual One

Use of Photographs in Ritual

In brief:

Show a photo or photos of the person who has died to the individual with a disability and talk about the person to help the individual mourn the loss. If the individual with a disability is nonverbal, the facilitator can verbalize "for the individual" about the loss.

Materials:

A photo or photos of the person who died.

Directions:

If the ritual is done in a classroom environment, have the students and others (with and without developmental disabilities) gather in a circle in the classroom, outdoors or in an environment where the students most often interacted with the person who died. Such environments may include the cafeteria if the person who died was a cook at the school or the music room if the person who died was a music teacher.

After the individuals have gathered, pass a photo of the person who died from person to person around the circle. Each person who holds the picture talks about the person while looking at it. Each person could say whatever they are thinking or feeling while looking at the photo. They could also say a word that comes to their mind.

If an individual in the circle is unable to verbalize her thoughts and feelings, a person who is able to speak (a facilitator) can "speak for" the individual holding the picture. The facilitator may say something they remember about an interaction between the individual and the person who died. For example, "I remember when Joe (the person who died) helped Elena (the individual with a developmental disability) paint a picture. I also remember Joe and Elena laughing while they painted."

If the ritual is done in a home environment, the gathering could be done at a kitchen table, in a family room or outdoors. Again, each person in the group (with and without disabilities) would take a turn holding the photo and talking about the person who died.

Example: Kari, a student in a high school class for people with severe and profound developmental disabilities, had lived with severe health complications since birth. Most of the students in her class had been together since elementary school and knew each other very well. They were aware of Kari's health difficulties. In February of the year, Kari's health began to deteriorate quickly. She was hospitalized for several days and then she died.

The day following Kari's death, the teacher sat with the students and told them the news. They were all aware that Kari might die soon because the teacher had kept the students updated on Kari's situation. The students, teacher, and assistants cried together and talked about Kari and what she meant to each of them. After the visitation and funeral, which only a few of the students attended, the teacher decided that it might be healing for the entire class to do a ritual at school.

The following morning, the students gathered in a circle. The teacher had a picture of Kari that had been taken for the school yearbook. The teacher invited the students and assistants to take turns holding the photo and saying whatever they wanted about Kari. The teacher started; she held the picture and said, "I will always remember Kari's smile." She passed the photo to a student sitting to her left. The student took the photo and looking at it said, "Friend Kari, friend." The picture continued to be passed around the circle. When it came to Anna, a student who was nonverbal, the teacher sat next to Anna and, as Anna held the picture, the teacher said, "Kari would sit with Anna and laugh." Anna smiled.

After the picture had been passed around the entire circle, the teacher asked if anyone would like another turn to say anything. One student took another turn and then the group sat in silence for a few moments prior to moving away from the circle and continuing on with their day.

Ritual Two

Using Storytelling in Ritual

In brief:

Write a story about the person who has died in collaboration with the individual with a disability.

Materials:

Paper and writing utensil (pen or pencil) or a computer to write a story about the person who died.

Directions:

Write a story about the person who died in collaboration with the individual. After the story is written, read it to and discuss it with the individual. It may be most beneficial to co-write the story with the individual with a developmental disability if she or he is able to assist in the writing. If the individual is unable to assist in the writing, the facilitator can write the story independently.

If the facilitator writes the story independently, it may be helpful for the facilitator writing the story to verbalize his story-writing process while the individual with a disability is present. For example:

"I want to write a story about Kim - let's see - Kim taught at this high school, so I will write 'Kim Jackson taught at Hill High School.' OK, what else? Well, Kim loved her students - in fact I don't know anyone who loved students as much as Kim did - I'll write, 'Kim loved to see her students each morning. She would stand at the door and say good morning to each student as they came to the room.' OK, that's good. I also need to write about how her students felt about her: 'Kim's students liked Kim, too. They said that Kim was a nice teacher and they learned a lot from her.' Now I want to write about the day that Kim died - that is difficult, but I feel it's important. OK - 'One day, the students came to school, but Kim was not at the door. The students were worried. Jeff Miller was their teacher for the day. He sat down with the students and told the students that Kim was not going to come back to school. He told them that Kim died in a car accident. ' Yes, that's what happened. I think I want to write what 'died' means. He said that 'being dead means that Kim's body doesn't work anymore. Kim cannot see or taste or feel anything.'"

It certainly depends on the ability of the individual as to how long and involved the story would be written. This type of story could also be used to describe what the students would see when they attended another ritual, such as a funeral or visitation of the body of the person who died.

Using storytelling in ritual is similar in some ways to "social stories" developed by Carol Gray. However, social stories were created to be used primarily with individuals with autism spectrum disorder. A social story is written with specific guidelines in mind to describe a situation by using cues and typical responses. It is written to ensure that a student has the social information she or he needs, and to present the information so it is easily understood by the student. Using storytelling in ritual is more free-flowing than a social story and has no specific guidelines.

Example: When I was teaching individuals with moderate to severe developmental disabilities at the high school level, one of my students, Marty, experienced the death of his aunt. Marty was verbal and took care of his personal needs independently. He was residing in a group home and was learning to be more independent in the community. His aunt was a primary care provider and Marty had a very close relationship with her. In fact, I always felt that Marty and his aunt had more of a mother-son relationship than an aunt-nephew relationship.

The morning after her death, a staff member from the group home where Marty lived called me. Marty's aunt had died unexpectedly early on a Tuesday morning. The staff member told me that they had talked with Marty about her death, but that he "didn't seem to understand" what had happened. They asked if I could explain the death to Marty. They also asked me to explain the visitation and funeral process so that Marty would be able to attend and not be "surprised" by what he experienced.

After my students arrived that morning and were prepared for the school day, we sat in our "talking circle" and prepared a "story" about Marty's aunt's death, the visitation, and the funeral.

The 12 students sat in an area with a circle of chairs and couches. We used this area for our morning meetings and any time we needed to converse about special events or announcements. First, I told the students that Marty's aunt had died and we talked some about what that meant (her body didn't work any longer, she could no longer hear, see, talk, or feel). The students had varied levels of understanding of death and what happened with ritual after the death. Some of the understanding seemed to be authentic and some seemed to simply be repeating what they had heard others say. For example, one of my students recalled that when her grandmother died, she wasn't able to "handle it." When I asked what she meant by that, she said that she didn't know but that her sister "couldn't handle it, either."

After our short conversation about death, we begin writing a story about Marty's aunt and what would happen at the visitation and funeral. This was done for several reasons. First, the story could help Marty and the other students better understand death and death ritual. Also, the story could be read to Marty when he needed to understand and ritualize the experience.

We started by having Marty tell us about his aunt. He told us what she looked like, what he liked to do with her, and how he felt about her. We then wrote about how his aunt died. The story began, "Marty had an aunt. Her name was Ruth. She was tall and had brown hair. Marty and his aunt liked to talk and watch movies together. Marty loved his aunt very much. One night his aunt went to bed and woke up in the middle of the night with a pain in her chest. Ruth's husband called the hospital to get her some help. The ambulance came to Ruth's house, but the people who came in the ambulance could not help Ruth. Ruth died. Being dead means that Ruth could not move and her body doesn't work anymore. She could not smell, hear, see, or feel."

The story continued by explaining in simple terms what Marty would experience when he attended the visitation and the funeral. I was familiar with Marty and his aunt's religion and could write about what Marty would experience. If I had not been familiar with the death rituals of the religion, I would have needed to contact someone with knowledge of the rituals for that particular tradition.

After writing the story, Marty insisted that Ruth would "get up and make dinner." We spent some additional time talking about the meaning of death and being dead. Marty finally seemed to understand the irreversibility of death. He took the story with him and asked for it to be read to him several times prior to the visitation and funeral. He also had the story read to him daily for several weeks, both at school and at his group home. About a month after Ruth's death, Marty asked for the story to be read on a less frequent basis.

Ritual Three

Use of Memory Objects in Ritual

In brief:

Have the people with disabilities put a group of objects together that remind them of the person who has died.

Materials:

Objects that belonged to the person who died and objects/pictures that remind the people with disabilities of the person who died

Directions:

Have the individual gather objects that belonged to or remind him of the person who died, such as photos of the person who died (with or without the individual with a developmental disability present in the picture), articles of clothing, books, or papers. For individuals with more severe disabilities, it may be important for the facilitator to gather the objects and have the individuals with disabilities pick the ones they want to display from the already gathered objects. The individual then places the objects on a table and says what she or he remembers about the person who died.

If the person with a disability is unable to verbalize her thoughts and feelings, a person who is able to speak (the facilitator) can tell about memories as the person with a disability places the object on the table.

The objects could be left on the table for several days or weeks so the individual can continue to use this ritual in the mourning process. The objects could also be taken down after a short period of time — maybe after a day or even an hour. Limiting the amount of time the objects remain on the table to a short duration may be important if the individual with a disability is easily distracted or tends to fixate on new items in the room. This ritual could also be repeated several times with the same or different objects.

Example: Lisa was a 10-year-old with a mild developmental disability. Lisa was taught in the general education fourth grade class and received some additional help from a special education teacher. Lisa's grandmother, Ellen, died one morning. Ellen had been living with congestive heart failure for several years and in recent months had increased difficulty breathing, walking even short distances, and contending with fluid retention. Lisa had a close relationship with her grandmother, but her grandmother didn't talk with Lisa about her illness or the possibility of her death; Ellen didn't feel Lisa would understand.

The morning of her death, Ellen called Lisa's mother, Kay, and asked to be taken to the hospital because she "just wasn't feeling very well." By the time Lisa's mother arrived at Ellen's home, Ellen was unconscious. Kay called the ambulance. The ambulance arrived and took Ellen to the hospital; Ellen died en route.

When Lisa arrived home from school that afternoon, her mother sat with her as Lisa ate a snack, as she did every day after school, and told her Grandma Ellen had died. Lisa started to cry and said that she didn't want Grandma Ellen dead.

Kay decided that it might be healing for Lisa to help create a ritual. Kay and Lisa went to Grandma Ellen's apartment and gathered some objects. Kay told Lisa that she could pick out some things that reminded her of Grandma Ellen. Lisa went to the table by the chair Grandma Ellen usually sat in. Lisa picked up a picture of Grandma Ellen and Lisa that had been taken at Lisa's ninth birthday party. She then went to the kitchen and picked up the coffee mug that Grandma Ellen used. Kay encouraged Lisa to pick several more objects. Lisa picked a scarf, a book, and Grandma Ellen's reading glasses. Kay also picked several objects from the apartment.

Kay and Lisa took the objects home and created a space on a table for the objects to be displayed. As Lisa put the objects on the table one at a time, she talked about why she picked the object, what it reminded her of, and what she would miss about Grandma Ellen. Kay also put the objects she chose on the table one at a time and talked about Grandma Ellen. Kay and Lisa took turns putting the objects on the table.

After the ritual, Kay and Lisa decided to bring the objects to the funeral home for the visitation and display them for the other mourners to see. This also gave Lisa the opportunity to talk with the other mourners about Grandma Ellen and which objects she had picked and what each object meant to her.

Ritual Four

Use of a Plant (or Tree) in Ritual

In brief:

Plant a tree or a plant in memory of the person who died and call it the (name of the person who died) _______ memorial/ memory/love plant (tree). Talk about the person as you help the individual with disabilities take care of the plant (or tree).

Materials:

A plant or young tree. It may be best to use a plant or tree that won't require a lot of "special attention" (such as only a limited amount of sunlight or daily watering). This will better assure that the plant or tree will continue to be a living memorial for the person who died. It may also be helpful to have a picture of the person who died.

Directions:

Help, to whatever extent is appropriate, the individuals with disabilities plant the plant or tree. As it's being planted, talk about the person who died and encourage the individual to talk about her memories of the person who died. If the person who died enjoyed gardening or planting, it may be especially meaningful.

After the planting is complete, the individual places a photo of the person who died near the site; if there is a photo of the person who died together with the individual with a developmental disability, this may be especially meaningful to the individual. If the plant or tree is outdoors in an unprotected area, it will be important to make sure the photo is protected. Lamination, framing, or enclosure in a small shelter might be appropriate.

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Excerpted from Helping People with Developmental Disabilities Mourn by Marc A. Markell. Copyright © 2005 Marc A. Markell, Ph.D.. Excerpted by permission of Center for Loss and Life Transition.
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