What is grief?

Grief is the feeling of deep and strong sadness caused by the death of a loved one. Grief looks and feels different for everyone.

Do people with Down syndrome grieve differently than others?

Everyone experiences grief differently, from how they grieve to when they grieve. This includes people with and without Down syndrome.

Some people feel sad or upset. Others feel angry or shocked. Some people might show their feelings and others might not. Some people react right away and others take more time.

What can I expect from my loved one with Down syndrome while he/she grieves?

Here is what you can expect while your loved one grieves:

  • Your loved one might show grief through words, body language or feelings.
  • It can be hard for your loved one to understand that the person who died is not coming back. It can take longer for your loved one to understand this as well.
  • Your loved one might have already experienced grief by not being able to take part in certain opportunities.
  • Strong memories of the person who died can make grieving more challenging.

What are the signs of grief?

The signs of grief include:

  • Feeling strong emotions, like sadness or anger
  • Change in appetite, mood or energy level
  • Withdrawing (not spending time) from other people or things that your loved ones enjoy
  • More frequent disruptive behaviors
  • Headaches

How can I help my loved one?

Here are some ways you can help your loved one:

  • Let your loved one show grief in a way and at a time that feels right for him/her.
  • Try to keep everyday routines going as much as possible. This can help create a sense of safety, purpose and normalcy.
  • When your loved one feels ready, encourage him/her to talk with you about the person who died.
  • Ask him/her to share his/her feelings, tell stories or talk about the person however they feel is best.
  • Talk about the person and stages of life (from birth through death) in a way that honors your family’s values, cultures and traditions.
  • Reassure your loved one about the future. It is normal for your loved one to feel worried or scared about loss in the future.
  • When you and your loved one feels ready, honor the person who died in a way that feels right for you. This can be through a yearly tradition, pictures or collecting objects that remind you of the person.

Books and resources about grief

Toddlers, young children and preschoolers

  • When Dinosaurs Die: A Guide to Understanding Death by Laurie Brown (Little Brown Books for Young Readers, 1998)
  • Always and Forever by Alan Durant and Debi Gliori (Harcourt Children’s Books, 2004)
  • Always By My Side by Susan Kerner and Ian Benfold Haywood (Star Bright Books, 2013)

School-aged children

  • Badger’s Parting Gift by Susan Varley (HarperCollins, 1992)
  • Tear Soup – A Recipe for Healing After Loss by Pat Schweibert, Chuck DeKlyen and Taylor Bills (Grief Watch, 2005)

Teens and adults

  • The Moon Balloon: A Journey of Hope and Discovery for Children and Families by Joan Drescher (Association for the Care of Children’s Health, 1996)
  • The Grief Bubble – Helping Kids Explore and Understand Grief by Kerry Debay (Limitless Press, LLC., 2007)

Other resources about grief

  • Spiritual Care at Massachusetts General Hospital and MassGeneral Hospital for Children (MGHfC)
    The chaplains at Mass General and MGHfC provide spiritual comfort and guidance through comfort, encouragement and prayer to people of all beliefs, cultures and traditions.
  • The New Zealand Down Syndrome Association
    An organization that works alongside families and caregivers of people with Down syndrome to realize their potential and reach their goals through all stages of life.
  • The Moyer Foundation
    An organization that aims to provide comfort, hope and healing to children and families affected by grief and addiction.
  • National Alliance for Grieving Children
    A nonprofit organization that raises awareness about the needs of children and teens who are grieving the death of a loved one. It also provides resources and education for anyone who supports children and teens.
Rev. 3/2018. Written by Mary Barber, MSW candidate, Simmons College
Reviewed by the MGHfC Family Advisory Council. MassGeneral Hospital for Children and Massachusetts General Hospital do not endorse any of the brands listed on this webpage. This webpage is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.