Talking to Children with Special Needs About Death and Dying

Talking with any child about death and dying can be daunting, but it may be particularly so when the child has special needs. When done in a way that takes into account the child’s specific developmental, social, and learning needs, a discussion such as this can be meaningful and highly influential as the child continues to grow and develop. Though there may be an inclination to shield children from loss, in fact these kinds of discussions can serve as important teaching moments about the nature of life and death.

Here are six suggestions for parents and other loved ones to consider when talking to children with special needs about death and dying.

1. Use Real Words. Children with special needs often process information in an especially concrete manner. Abstract ideas and metaphors can be confusing and can provoke anxiety. When talking about someone who is dying or has died, it is best to use the actual words. For example, adults should use the word “died” rather than “passed away” or “gone.” If a child is comfortable with more scientific concepts, try explaining along those lines, such as “His heart is not beating any more.” Using phrases like, “She is sleeping” or “He is in a better place” may be confusing or even scary. Though these softer words can feel to the adult like they are cushioning the topic, in fact they are making it less comprehensible to a child for whom inferences may be difficult.

• Anticipate the Loss. If a loved one is in the process of dying, it can be helpful to talk with the child as it is happening, so as to help prepare for the actual death. As an example, a child with special needs and mathematical inclinations was known to ask, “What percentage is she?” in relation to his grandmother’s dying process. His family was able to respond, “Today she’s at 20%,” and then the next day, “She’s at 15%.” When the child heard his grandmother had died, he said he understood and that “Now she’s at 0%.” Adult use of language that is open, honest, and concrete can help a child with special needs navigate this complex issue.

• Prepare for Next Steps. If the child will be attending a funeral or memorial service, it is helpful to do some advance preparation with them. Consider utilizing strategies that have worked in other areas of the child’s life, such as picture schedules or check lists. The parent can write a check list with the day’s schedule and have the child check off activities as the day goes on, e.g., getting dressed up, driving to the funeral service, being at the funeral, driving to the cemetery, being at the cemetery, driving home. It can also be helpful to verbally prepare the child or draw simple pictures about what they might see and experience at each activity. Have a trusted adult available to be with the child during a funeral and burial in case a break is needed.

• Explain Displays of Emotions. Some children with special needs may have challenges in reading the emotions and cues of others around them. It can be helpful to prepare the child for the likelihood that they may see adults crying and to explain that this crying is a way they express their love for the person who died and their sadness about the death. It is also important to prepare the child attending a funeral for the possibility of seeing other emotions, such as laughter, should someone share an amusing anecdote about the person who died. Such a discussion may also help prepare the child for emotions they might feel.

• Remember the Loved One. Support the child in remembering the person in a way that is meaningful and accessible; for example, if the grandfather who died loved trains, the parent can help draw a connection between that and the child’s love of trains, such as “When you play with your trains, it reminds me of how much Grandpa loved trains, too.”

• Support the Child. Know ahead of time that children with special needs, indeed any child, may regress or turn to self-soothing behaviors during the dying or after the death of an important person in their lives. Be prepared to answer questions and offer the kind of support that works for the child, such as quiet time, playing outside, or other desired or preferred activity of the child. Inform teachers, therapists, and counselors, so they can work with you in supporting the child during this challenging time.

About the Author: Arlen Gaines, LCSW-C, ACHP-SW, is a hospice social worker at JSSA and the co-author of “I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs.”