Discussing the Loss of a Loved One with your Child with Special Needs

Discussing the Loss of a Loved One with your Child with Special Needs

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The loss of a family member is a tremendously overwhelming experience to the most prepared adults. We often struggle to comprehend the loss, to make sense of the future without our loved one, or to know what the “right way” to grieve might be. Helping your child with special needs through the loss, all while you grieve yourself, can be equally intimidating.

Below are some tips that can help a family with a special needs child work through the loss of a loved one:

  1. It is important that your child hears about the loss from someone they love and trust, typically a parent. It can be confusing and more overwhelming to hear about the loss from someone else who may not be as sensitive to your child’s needs.
  2. Consider what your child knows about death. Have they lost anyone before? Maybe your family has lost a pet. If not, does your child know what death means? It is important to consider your family’s religious and cultural beliefs regarding death before talking with your child. If there has been an experience of loss, you can reflect on this experience with your child as well.
  3. Honesty and simplicity are best. Consider your child’s developmental age and practice creating a “script” to share with your child. Share the information when you are home and together as a family so that your child is comfortable and feels safe. The information you share should include the name of the deceased relative and what happened to them. Use language that is developmentally appropriate, direct, and succinct. Details provided should be relevant to the situation and appropriate for your child to know.
  4. Consider that children tend to primarily think about information as it impacts them directly. Your child might have concerns about their own health or the health of you or other family members. This is especially true for children with medical complications. Consider reassuring them that they are safe and healthy if this is appropriate.
  5. If your child asks you a question that you are not prepared for, or do not know how to answer, consider saying, “That is a wonderful question and I have to think about it more. I will let you know my answer in a little bit.” Take some time to consider the best way of responding that will answer your child’s question most appropriately.
  6. Consider preparing a social story or purchasing a book about death and loss that can be read with your child after you talk with him/her about the situation. This can be especially helpful for young children or for children that benefit from multiple opportunities to process information and comprehend complex language.
  7. Prepare for this discussion to occur in an ongoing manner over time. Like adults, children process and cope with loss in many ways and there is no exact timeline for the process. For many children, it may initially appear as if they have no emotional reaction to the loss. This is not uncommon for children on the autism spectrum. Of course, all children will have feelings about the loss and these feelings may be exhibited as behavioral changes, regressions, emotional reactivity, or sadness at a later, or even unexpected, time.
  8. Make a “Memory Book” with your child about the relative you have lost. A memory book can include information about the person, happy stories and memories family members share, and pictures of your child with the relative. If your child is sad and misses their loved one, validate this feeling, and suggest you read the memory book together. This can also be a “Memory Box” which consists of favorite objects (e.g., watch, favorite t-shirt, perfume/cologne, favorite book, etc.) and special photographs, or can be made with the use of technology to include videos.
  9. Talk about feelings as a family. It is fine to cry and be sad in front of your child as well as reassure them that you are ok and that your family will get through this. Ask your child periodically how they are doing and validate their feelings.
  10. If your child appears to be struggling with the loss more than you expected, or your family is having trouble coping, consider a referral to a mental health professional with a background in developmental disabilities.

More information on the outpatient mental health services CCSN Behavioral Health offers can be found here.