Walking with People with Intellectual and Developmental Disabilities in Their Griefby Mark Stephenson
Friendship Ministries is pleased to present this resource to help you step into the grief journey with someone you care about. As a family member, friend, pastor, caregiver, Friendship group leader, or fellow Bible study participant, you are in a position to help someone with an intellectual or developmental disability who is hurting over a significant loss. This resource will help you help your loved one in the first days after the loss as well as in the long months and years of healing that will follow. This resource is written from a Christian perspective, and we hope that whatever your faith tradition, you will find ideas to help you walk with your loved one as they travel the grief journey.
Walking with People with Intellectual and Developmental Disabilities in Their Grief
by Mark Stephenson
God never intended us to suffer alone. He created us to care for and support others in their time of need—and to allow others to care for and support us in ours. This is being interdependent, which is God’s original plan, rather than independent, which can be a very lonely way to grieve.
—Kenneth Haugk, A Time to Grieve (St. Louis, Mo.: Stephen Ministries, 2004), p. 13.
It was an ordinary day for a father and son until the van they were in was t-boned by a truck with such force that the van was crushed. The father died instantly, and his body was thrown into the lap of his son, a young man with Down syndrome and severe speech impairment. We’ll call the young man George.
Some professionals believe that people with intellectual and developmental disabilities aren’t able to understand death and do not know how to grieve. Some parents don’t take family members with disabilities to a loved one’s funeral, believing they won’t know what is happening, or fearing they will be “out of control” in their grief. George’s mother was often asked if he knew what had happened to his dad. Within a few months, George and his mother were told that he should be “over it” and “back to normal.”
This kind of advice reflects a number of mythical beliefs held about people with intellectual disabilities and grief. Nancy Kirchner, MSW, a professional who deals with death and dying issues, has identified other myths such as these:
- People with intellectual disabilities are incapable of forming attachments.
- People with intellectual disabilities easily forget people who have died.
- Only experts should talk to people with intellectual disabilities about death.
- People with intellectual disabilities do not communicate grief through their behavior.
Because George has a severe speech impairment, and because he grieved his father’s death deeply, he needed years to heal. Since most people process their grief primarily through words, his mom and caretakers found other ways to walk with him in his grief.
Besides the death of loved ones, people with intellectual and developmental disabilities experience many other kinds of losses. Some grieve the loss of dreams, such as getting married, having children, having a full-time job, driving an automobile, or owning their own home. Others, who have caregivers (in a group home or their own home), grieve over the frequent turnover of these staff, especially if a favorite caregiver leaves. (Some caregivers make a bad situation worse by pretending that a departed, favorite caregiver never existed at all!) Still others may grieve the loss of respect they have to deal with when people poke fun of them, ignore them, or treat them like children. Grief may come over a variety of other losses too, such as the death of a beloved pet, a move to another home, the loss of a job, or a change in routine.
Whatever the reason for the grief, the family members and friends who care about the one grieving need to think about what will be most helpful in two time frames: the short term (the immediate hours and days after the loss) and the long term (the months and years following the loss).
In the short term and in the long term, the following assumptions will help you walk the journey of grief with the person who is grieving:
- Everyone grieves. No matter how limited a person’s apparent understanding, assume that he or she will grieve over a loss. Keep in mind that some people with developmental disabilities are not able to ask questions, but they may still have them.
- Everyone grieves differently. Emotions that are common when one grieves include panic, worry, anxiety, anger, confusion, longing, guilt, hopelessness, sadness, loneliness, and relief. Don’t expect anyone to follow a set pattern.
- People who love Jesus grieve. Though Christians have the hope of the resurrection, losses bring pain.
- Jesus walks with us in our grief. Jesus wept over the death of his dear friend Lazarus (John 11:35). Scripture tells us that Jesus was “fully human in every way” (Heb. 2:17) and that he “took up our pain and bore our suffering” (Isa. 53:4). The person you journey with may be from a faith background other than Christian, but many people of other faiths believe that God comforts them and accompanies them when someone they love dies.
- A healthy way to deal with grief is to face it squarely. Don’t pretend that the loss has not occurred. Instead use simple, clear, sensitive language to name the loss. “I’m so sad to tell you that our friend James died, and that means we will not see him or talk with him again.” Avoid euphemisms for death that could be misunderstood. True story: Once a young man with an intellectual disability was told that his uncle was “lost” due to a car accident. The young man disappeared for about 45 minutes. When he finally came back to his family, he said his uncle was still “lost,” since he had been unable to find him.
- Death and loss bring big, mostly unwelcome changes. Talk about what will change and what will not change, and who will help the grieving person with the changes.
- The new heavens and new earth will be wonderful, but be careful not to answer questions that Scripture does not answer. Jesus promises that everyone who loves him will receive a new body. The perishable will be clothed with the imperishable, and we will be made new. When speaking informally or at a funeral or from the pulpit, Curt Gesch (from Telkwa, B.C.) says, “We know that God is with [the deceased person]. God never leaves us.”
When caring in both the short term and long term, the most important response we can make is to listen with all of our senses. Caroline Short, who lived in a L’Arche community for a time, told me, “Create space for [persons with intellectual disability] to openly grieve or share at the funeral or in a small group setting. They may be inarticulate, but listen and let them know that you are listening.” Approach the journey with the grieving person with a posture of curiosity, avoiding assumptions about what they may or may not feel. Trust them to tell you in their own way and in their own time what they are feeling and what they need. Listen to words and behaviors, to what is said and not said. Grief is experienced emotionally, spiritually, socially, and physically. If unexpressed, it will have consequences that can be quite harmful.
Listen to the whole story. It may be that the most recent loss is not the only one that the person is grieving. Listening includes observing body language, looking at pictures, encouraging artistic expression (drawing, painting, dancing, poetry, writing) while the other talks. Perhaps you will learn what is true for the grieving person from their reaction to your words. When you see unusual behavior, ask, “Are you missing [the deceased]?” See if they respond with a nod or with some indication that this is what they are paying attention to.
People who do not use words to speak may communicate in other ways, such as through changes from “baseline” behaviors. For example, our daughter Nicole, who has severe, multiple disabilities, bites her wrist only when she is very upset. Others may cry, withdraw, or have a sad face, or they may show their grief with behaviors that may be considered socially inappropriate, such as hitting, kicking, pinching, banging their head against the wall, or something else. These behaviors may be the only way the person knows how to communicate their grief.
Rev. Ted Verseput’s daughter Salli, severely impaired in a childhood accident, lived for years in a group home. She was not with the group one day when all five of her housemates were killed and a staff member was severely injured in a van/train collision. Within days, all traces of her companions were removed from the home, and they were not talked about for fear of “upsetting” Salli. Within a short time her behavior became a problem. In a meeting to discuss the difficulties evidenced at home and at school, it was suggested that she was exhibiting “misbehavior” due to “too much attention.” Eventually, however, her parents were able to persuade school and home staff that she was grieving. After everyone approached the situation from that viewpoint, Salli began to show marked improvement.
Be sure to show compassion and connection through appropriate touch, revealing your own feelings about the loss. Do your best to use words and concepts that you think they will understand. Don’t impose a timetable on the other’s grief, but allow it to unfold over time. Grief can’t be hurried for anyone, including a person with intellectual or developmental disabilities.
Walking with a Grieving Person in the Short Term
When a person dies, rituals and customs are usually followed, and these can vary by region. People with intellectual disabilities should be included with other grieving family and friends in these rituals, according to their desires and needs. Christian funerals and memorial services share memories of the one who died, comfort those who mourn, and affirm the Bible’s promise of everlasting life for all who love Jesus.
As you begin the grief journey with a person who has an intellectual disability, let them know what to expect. For example, describe what they are likely to experience during visiting hours, such as the open casket (if there will be one) and the people who may be there, and talk about appropriate things to say. Accompany the person during visiting hours and invite questions. Answer questions with clear, simple language. Before the funeral, explain what to expect, including the funeral service, the pallbearers, the funeral coach, the food that will be served, and anything else you expect will take place. Originally, social stories were created for people on the autism spectrum; they can also be helpful for people with other developmental disabilities. Adding pictures to a social story can be even more beneficial.
For Residents of a Group Home or Participants in a Friendship Group
Short, easily memorized liturgical phrases can have great meaning for a service. Caroline Short suggests that the liturgical phrases “Christ has died; Christ is risen; Christ will come again” can be memorized by many people and said in services of grief, during a visit to a grave, and in everyday gatherings. She adds, “As Christians, we are united with Christ and follow him in death, resurrection, and union in relationship. Christ knows our human experience and has gone on before us. We need not fear.” Other such phrases include “Thank you, Jesus,” “I love you, Jesus,” “God, help me,” and “Hear our prayer.”
Pastor Dan De Vries, Religious Services Coordinator at Hope Haven in Rock Valley, Iowa, has found a simple liturgy helpful for group home residents and staff when a resident or staff member dies:
- Sing a familiar song.
- Read the obituary.
- Read some comforting words from Scripture. Dan says, “The Scripture passages I use most are Romans 8:38-39 and John 14:1-3. I explain the passage from John by saying that the person’s room in our Father’s house was ready for them. Our room is not yet ready for us.”
- Share pictures and memories. Encourage everyone to participate.
- Close in prayer.
Similarly, this liturgy could work well with a Friendship group when a group member dies. To help mourners express their grief, lament psalms, such as Psalms 13 or 42, may assist in voicing the pain of the whole group. Memories can be shared with the large group and also during one-on-one time. A service or liturgy can also be more meaningful to everyone when friends with disabilities can help with planning and leading it.
Walking with a Grieving Person in the Long Term
You may find one or more exercises in the following list to be helpful as you journey with someone in their grief. Pick and choose so that you can customize for the person who is grieving. Don’t be afraid to experiment. If one idea does not help, another might. (Many of these ideas come from Linda Preston, who has a son living in a L’Arche communityand who has taught people with disabilities for many years.)
1. Put the person’s hand on a page and trace around it. Write their own name on the palm of the traced image. Then at the end of each finger make a picture of something they did with the one who died. Emphasize that they can still do many of the things they did together with the deceased—but with other people now. You may need to note that some things they did with the person who died will not happen anymore. It may be helpful for the person who is grieving to do this exercise over and over in the months after the loss.
2. With the person who is grieving, look through photos of the person who has died. If the two went somewhere together, go to visit that place with the grieving person and snap a new photo there of the person who is grieving. Make an album that includes pictures from the past and new pictures from the present, side by side. Label the pictures so that other people can also view them with the person who is grieving.
3. Write the deceased’s name in block letters on a piece of paper; then cover the name with quick-release masking tape (which won’t tear the paper when you pull it off). Invite the grieving person to color the whole page to the edges with whatever colors they want, even over the masking tape. Once that is done, say, “This whole page is your life.” Then peel off the masking tape and see the deceased’s name surrounded by an explosion of color. Remind them, “[The one who has died] is still a part of your life; they are still with you in your memory.” Linda Preston used this exercise in her work and says that even people with profound disabilities respond well to this exercise.
4. Create a timeline of the period just before the loss (day, week, even month). If the individual cannot articulate events that are important, or cannot put them in order, name events that happened around that time. Get help from others, if possible. On the timeline write down the events, described in a few words and perhaps with a picture or illustration, in the right order. Plan to do this with the grieving person more than once. Add additional events if the individual remembers them. Return to the timeline again and again until the individual no longer asks to do it.
5. In connection with the preceding exercise, buy puppets or use other objects to reenact events on the timeline, perhaps to replay conversations with the person who has died. This may be especially helpful if any of the final conversations were arguments.
6. Think about what the person who died especially loved, or what the grieving person and the person who died enjoyed doing together—such as shared hobbies, listening to favorite music, or attending sports events or concerts. Do these things with the grieving person, if possible, and reminisce with words like these: “We used to do this with [the deceased]. Here’s where we sat. This is what we did.”
7. Light candles around the house as a reminder that the person who died is in heaven.
8. Reenact a burial ceremony as a gentle reminder that the one who died remains with us in our memories: Get a peanut in the shell and a little box (such as a matchbox). Decorate the box and put cotton in it. If the grieving person is not allergic to peanuts, invite them to break the peanut out of the shell and eat it. Put the shell in the box and close it. Explain that the peanut is inside us, and all we are burying is the shell. Something similar is true of the person who has died. They are inside us, in a way, because we still remember them, and only their shell is buried. Then go out and bury the little box, inviting expressions of mourning for the one who died. (This is a ceremony learned from Orieda Horn Anderson.)
9. Write a message or assist the person who is grieving to create a message and put it in a helium balloon. The message could express a prayer or a memory, or it could be a picture of the one who died. Releasing the balloon symbolizes the ascent of the prayer or memento in recognition of the person who has died and is now in heaven.
10. Many people find it valuable to visit the grave of the person who has died. Sometimes people in group homes travel together to the gravesites of loved ones on the anniversaries of their deaths.
11. Years after the loss, people may still have flashbacks. Give them gentle reassurance with the words “That was then, and this is now.” Flashbacks can be very disruptive at first but generally become less intrusive as the years go by, especially when the grieving person receives gentle reassurance each time.
12. Find a prayer that is of special significance to the person who is grieving. Perhaps your faith tradition has specific prayers for people who have died or for members of the family, or perhaps the person who is grieving often said a special prayer with the person who has died. Say the prayer together on a regular basis.
13. The rich meaning of holy communion or the Eucharist can be used as a reminder that Christ is real and is with us in the midst of our pain—just as the elements we eat and drink are real.
14. Shellie Power, director of spiritual care at Hope Centre Ministries in Winnipeg, Manitoba, has helped people who especially enjoy artistic expression to create a scrapbook to remember the loved one who has died. A scrapbook can help the grieving person in two ways—both through the process of working on it and as something to look through and remember on important anniversaries or whenever one feels the need. Shellie writes,
It is a five-week project and typically done one on one. The reality for many people with developmental disabilities is that they hear various, sometimes conflicting, messages, and they may even encounter conflicting belief systems from staff in the home, day program staff, family, and friends. A finished scrapbook provides an individual with words that don’t change, providing them a story that reflects their own memories and beliefs. Upon finishing a scrapbook, we encourage the individual to share the book with as many people as possible and to have these people sign a special signature page at the end. Whenever the grieving person feels sad or wants to talk about their loss, they can take out their book and look through it, and whoever is with them can support them and not confuse them by adding new words or ideas.
Before the first session, the individual is encouraged to collect photos of the person who has died. It is good to get a large variety of pictures, including pictures of the two persons together. The family of the grieving person is asked to complete a brief questionnaire so that the individual doing grief support will know from what faith perspective the individual is coming.
Week one: The grieving individual talks about their pictures and tells about what is happening. The support person writes down their words (as close to word for word as possible); later they are typed. Here is an example of the scrapbook outline I did with a young woman who lost her mom to cancer:
I remember my mom (cover)
Pictures and captions that share memories (I asked lots of questions and typed up the words for next time.)
I liked it when we . . .
Her favorite things: My mom really liked . . . (songs, Bible verses, movies, color, food)
What I learned from her: My mom showed me how to . . .
My mom got sick: How did you find out? Who told you?
My mom died: Important dates. We use obituaries/funeral service cards here. (Notice the songs and prayers used in the funeral service. Talk about them. Sing them.) Ask questions and keep notes of what was said for the text of the book.
I will miss my mom: Pictures of things we did together . . .
Where is my mom now?
When I am sad, I can . . .
Weeks two through five: We read the part of the book we’ve completed (pasting in typed text from the previous week) and add new thoughts, pictures, and ideas. When the book is finished, we include a letter for family/support staff in the book. We also encourage them to sign the back with any messages/comments.
This young woman has brought her finished book back to me several times to show me new comments. She likes the book very much. Her dad really liked it too, because it was hard for him to talk with her about her mom’s death. Reading the finished book together gave them words for some special and needed father/daughter grieving. The young woman’s support staff have been very appreciative too, because often they weren’t sure what to say or how to talk about her mom’s death. Now, when she is crying and upset, they say, “Let’s look at your book, and we can have some ‘remember’ time.” ”
Dini Geerts of Abbotsford, British Columbia, worked for 13 years as a psychiatric nurse, and in the past 10 years she has worked as a psychiatric support worker with people who have various disabilities such as fetal alcohol syndrome, deafness, and blindness. From all of these people she has learned a simple lesson: “The processes by which we feel loss and grieve are pretty universal for all of us. Even when grief would reappear some years later, we would walk the grieving person through the event, what they did, how they felt, how they feel now. We would recall a funny event or a favorite memory. Sometimes we wrote a letter: to God or to the family or to the loved one. If this all sounds familiar, that’s because it is. There is not much, if any, difference in our human need to grieve and the way we are affected by it.”
Journeying with someone in their grief, in the short term and the long term, is all about listening and sharing Christ’s hope and love. As we encourage the person to express their pain in their own way, we have opportunity to reassure them so that they know they have been heard and they feel comfortable, loved, and safe in God’s loving arms.
Suggestions for Further Reading
- Helping People with Intellectual Disabilities Cope with Loss is a brief and helpful two-page resource with tips and resources from the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.
- Supporting People with Disabilities Coping with Grief and Loss by Hrepsime Gulbenkoglu, is a free booklet available online The first section, for people with intellectual and developmental disability, provides information about grief and loss using pictures and easy English. The second section, for support people, contains guidelines that may be helpful to families and service providers who wish to assist the grieving person who has a disability.
- Search online for “Funeral Social Story” to find many good examples of social stories that will help a person with intellectual or developmental disability prepare for going to a funeral. Dawn Villarreal, who runs One Place for Special Needs, has collected a number of articles, videos, and social stories on her page, Guide to Understanding Death for Young Children and Special Needs Kids.
- Search www.qualitymall.org for “grief” to find a number of articles (many free) and book suggestions for supporting people with developmental and intellectual disabilities in their grief.