Parenting, Resources

How to Talk to your Child with Special Needs About Death

The first time I had a conversation with my son about death I mistakenly thought that his autism was going to shield him from the emotional burden of loss. I couldn't have been more wrong. “Why do you look so nice?” asked Evan when I got home from a funeral. I told him where I was but did not expect him to understand because we had not experienced the death of a loved one nor did we have an occasion to talk about death with our children. “Was it dark at the funeral?” asked my son, then five, who is obsessed with lights.  I answered his question by telling him in great detail about the lighting at the funeral. By focusing my response on the lights I avoided the topic of death, thinking how fortunate he was to not have to experience the painful feelings of coping with such a profound loss. His next question proved that I was the ignorant one. “Did you cry at the funeral?” How did my son not only know what a funeral was but attach the appropriate emotion to the event? Two years later I still don’t have a clue but I will never underestimate what my son knows or is capable of comprehending.

Do I Keep my Child in the Dark?

Talking to any child about death is difficult. We want to shield them from the harsh and unpleasant realities of life and preserve their childhood ignorance and bliss for as long as possible. Sometimes we are lucky and other times we are forced to grieve together with our children. This process can be especially difficult when you have a child with special needs. Often it’s hard to know if they comprehend the situation or to what extent they understand. Furthermore, children with special needs may express their grief and feelings differently but their grief is not any less powerful.

When, What & How to Tell

What we tell our children about death, as well as when we say it will depend on their age (or developmental age) as well as our own beliefs and feelings and the specifics of the situation we find ourselves in.  For example, the death of a close relative is different that the death of an acquaintance or even a tragedy on the news. Each child understands and reacts different but as parents we need to provide children with clear and truthful explanations.

8 Tips for talking to your child with special needs about death

The following strategies should be kept in mind when talking about death with a special needs child:

1. Prepare Your Child

Tell the child that a loved one is dying so it does not come as a shock. Of course death isn’t always foreseeable.  When the death of a loved one is unexpected and tragic, it is extremely difficult to explain something to our children that we don’t even understand. In such a situation, children are intuitive and sense when something is going on so it is best to tell them the news as soon as possible.

2. Use the word "Sad"

Begin your conversation with a statement such as “I’m afraid I have something very sad to tell you.” This helps prepare the child somewhat for what you have to say to them.

3. Choose your words carefully

Choose your words very carefully because children can be very concrete and literal in their thinking.  Avoid referring to death as “going to sleep” or a “final rest.” Such words may make them afraid to go to sleep out of fear they will not wake up. Similarly, saying a loved one died because he or she was sick may make a child afraid that a cold, cough or other illness could be fatal.  It’s best to explain that only very bad illnesses can make a person die and sometimes the doctors cannot make that person better.

4. Celebrate Their Life

Following the death of a loved one, provide opportunities to remember and celebrate that person’s life.  It’s important to allow a child the chance to talk about the person who has died but don’t force your child to share thoughts and memories.

5. Participation

If rituals are important to the child, establish a ritual to help him cope with his loss. For example have or assist the child in writing a story about his loved one or putting together a memory box.  For a non-verbal child or low functioning child, assist him in collecting pictures and other items that remind the child of the person who died.  The child can then visit the project on a regular basis to honor the memory of the loved one. Alternatively, you may want to find an activity that the person used to do with the child, such as playing a certain game, going to a particular place together or taking a walk together. Make sure to talk about the person who passed away to help with the healing process.

6. Take your child for a visit

Do not be afraid to bring their child to visit the person who is dying or attend the funeral.  Both can be important in providing closure.  However prepare the child for what he or she will see and how others may be reacting. If the child does not want to go, never force him or her. Instead, offer options like making a card, writing a note or bringing flowers to the grave.

7. Listen and be patient

Be patient with the child who may ask the same questions over and over again. Also make sure you are available to listen, talk or just spend time with the child as they grieve.

8. Books to read

Books such as the ones listed below are also excellent resources:

• Creative Interventions for Bereaved Children by Liana Lowenstein.
• Why Did You Die? By Erika Leeuwenburgh and Ellen Goldring
• Get Rid of the Hurt by Madeleine Brehm and Rachel Wenzlaff