“My grandma isn’t a dinosaur. Why are the dinosaurs in this book teaching about death?”
“My dad’s not a leaf. I don’t understand what falling leaves have to do with him dying.”
“My aunt died. Why is everyone saying she’s in a better place?”
Metaphors, symbolic language, euphemisms. These all present challenges for many children with special needs who process information in a concrete manner. The quotes above encapsulate some of the feedback we have heard during our work in hospice care and in special education, as parents describe their struggle with explaining death and dying to their children. We wrote I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs to address these challenges, and to create a book that parents and caregivers can read with all children.
Complicated subjects like death and dying can be particularly daunting to discuss with children, and even more so when those children have special learning needs; there is often no easy answer to difficult questions. The following strategies provide guidance on supporting a child with special needs around death and dying. Remember, every child processes information in a unique manner; consider which approach will work best for the children in your life based on strategies that have been successful in other scenarios. For instance, consider if the child learns best through visual cues, or through repetition. Do he/she process information best in short spurts? Does he/she have auditory processing or sensory-based challenges? Most of all, remember that special education is just good education! These strategies can work for all children.
- Straight Talk:
Though one might be tempted to “soften” the topic with “gentle” language, it can be more helpful to use the actual words, like “death” or “died” when talking with a child. Use concrete language and avoid euphemisms. Phrases like, “they are in a better place” or “they have passed” can lead to more confusion and anxiety.
Consider using a short picture story, or checklist, to help provide a framework for next steps, especially if preparing them to attend a funeral or memorial service. Pictures, repetition, and perhaps even doing a “practice drive” to the funeral home, church or synagogue can help the child understand what to expect. Have a trusted adult on hand to be with the child if they need a break during the service.
Many children with special needs have difficulty reading the emotional cues of other people. Preparing them for emotions they and others might experience can be helpful. Let them know some people may be sad and crying, and it’s ok if they feel the same way. Preparing for the emotional aspects of the experience with pictures or images, such as those provided by Symbol Stix (www.n2y.com), can be particularly useful.
- Sensory Processing:
After someone dies, disruptions in routines are common. Many more people may be in the child’s home, and there are likely new sounds, more hugs, and other changes that can challenge a child’s sense of order. Consider what sensory-based strategies have been helpful for the child in the past, and utilize those during this experience. Perhaps the child might need to take a break in a quiet room, hold a comforting toy, crash into a pile of pillows, or swing outside.
Support the child in remembering the person who died in meaningful and accessible ways. Ideas include creating a memory box filled with pictures or other mementos; helping to make connections for the child as to the impact of this person on their lives (i.e. if riding a train together, remembering a trip they took in the past with the person who died); or creating a short picture story about the person and their death, and ways they remember him/her.
- A New Normal:
When possible, try to maintain routines, as they are likely comforting to the child. However, do expect the possibility of regression, as the child may turn to self-soothing behaviors or show traits of an earlier developmental phase. Lean on your existing team of supporters, including teachers, school counselors, therapists, and friends.
If the child can communicate verbally, through assisted communication devices or in other ways, continue to encourage questions, even if the questions have no easy answer. We received much feedback about this issue when researching our book, as parents shared how difficult it had been to support a child around the questions that do not have a clear answer (“Why does someone die?” and “What happens to someone after they die?”). Continue to keep the lines of communication open, and acknowledge the frustration around not having a concrete answer to difficult questions.
Death and dying brings up myriad emotions for each of us, which certainly affects how we help our children cope. Keep in mind that you are already an expert when it comes to your child. Relying on previously established strategies and support systems will go a long way in helping your child process this change in a healthy and developmentally appropriate way. This will lay the foundation for coping with other unexpected events and challenges throughout his/her life.
Arlen Grad Gaines, LCSW-C, ACHP-SW is a licensed clinical social worker with an advanced certification in hospice and palliative care based in Bethesda, Maryland. She is co-author of I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs (Jessica Kingsley Publishers).
Meredith Englander Polsky, MSW, MS Special Education, founded Matan (www.matankids.org) in 2000, and has helped improve Jewish education for thousands of children with special needs. She co-authored I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs (Jessica Kingsley Publishers).
Please visit their website at www.ihaveaquestionbook.com for more information.