Bereavement

Resources for coping with grief and loss

Some Thoughts …

The death of a child is a devastating experience for all parents. The death of a special needs child adds the unique aspect that the parent’s identity is often tied to the child due to being the child’s primary caregiver. Compassionate Friends describes it this way, “It can create a crisis of identity and direction that provides another layer to the grief already felt.” An important step in the journey is to find other parents who have lost a special needs child. There is a special bond when another parent can share in the unique experience of losing a special needs child.

Please reach out to us if you would like to meet with other parents who lost their KCNT1 warrior, or fill out our form below.

“You will never stop grieving for your child. Grief is the price we pay for loving so intensely and that we love continues on beyond this physical world. It is possible to continue to miss your child while at the same time treasuring and honoring your child’s life instead of focusing on the loss. Keeping the memory of your child alive and allowing that memory to live through you is an attainable goal.”

- Kalila Smith, CGT, NLP

Farewell, My Forever Child by Kalila Smith, CGT NLP. A great book written by a special needs parent who lost a child.

More Books Are Available from this wonderful resource.

  • Self Care-which will be incredibly hard during this time is vitally important. Allow your body to rest and get more sleep. You will be more tired during this time, and you should listen to your body. Take vitamins. Remember to eat and make healthy food choices. You need fuel for your body. Your body needs to heal, and you need to give it adequate rest and fuel to do that. Exercise-dance, yoga, meditation. Writing and journaling can be helpful.

  • Everyone grieves at their own rate. Take your time and process your feelings. Give yourself some grace.  

  • Share your story with others. Share with friends and family. Join support groups. It is okay to tell others that you are not looking for advice, but you are looking for a listening ear. 

  • Take care of your physical and mental health. Grief can manifest itself in physical and emotional aspects of your life. Be willing to talk to your family doctor about any stages of grief or manifestations that you are struggling to process. One of the best ways to process grief is talking with someone where you feel safe to share exactly how you feel. Someone you can share the raw emotions you are experiencing. Seek a mental health professional who works specifically with grief counseling.

  • Give yourself permission to laugh again. Your body cannot take constant stress. It is okay to laugh again. 

  • Ways to memorialize a child: Social media page, website, collection of photographs or videos, poems, journals, fundraisers. Release balloons or butterflies. Have an event with friends and family. Decorate gravesite-some people will do this on holidays or birthdays as well. Dedicate a garden to the loved one. Have their name etched into a memorial rock, brick, or fountain. Make a donation in their name. 

Support Resources

  • When a parent loses a child, the pain and grief are immeasurable. Find out how to best support parents through the hardships of their loss.

    Bereaved Parents of the USA – This national, non-profit self-help group offers many resources for bereaved parents to help them rebuild their lives.

    Candlelighters Childhood Cancer Foundation   – Families don’t have to face childhood cancer without support. The Childhood Cancer Foundation provides emotional, educational and practical assistance for families in need.

    CJ First Candle  – This organization provides bereavement support to families who have suffered the loss of a baby from SIDS, SUID or stillbirth.

    Parent Grief Support Directory – Find a wide array of local, national and international grief support resources for grieving parents.

    MISS Foundation – For families who have experienced the death of a child, find grief resources and online support forums which are fully moderated for safe, caring interactions with others.

    Perinatal Hospice and Palliative Care Resources for Parents  – These resources are for parents who have been told by medical professionals that their unborn baby will likely die before or after delivery.

    The TEARS Foundation – This non-profit organization offers compassionate financial assistance to grieving parents who have lost a baby and need to make final arrangements.

  • Due to their lack of experience in life, the death of a family member or other loved one can severely impact a child’s emotional well-being. Find online and in-person support resources below.

    National Alliance for Grieving Children – NAGC offers online education and a support group database to assist children and teens throughout the grieving process.

    Kidsaid   – Discover a safe place for children to help one another with grief and loss. The site contains an email support group, a place to share artwork and stories and the opportunity to ask questions and find answers.

    Comfort Zone Camp – These free camps are available for children 7-17 who have suffered the loss of a parent, sibling or primary caregiver. They are held year-round in locations across the United States.

    The Dougy Center – As The National Center for Grieving Children and Families, The Dougy Center offers a variety of grief resources for children and families who are grieving a death.

    Death and Grief  – This article contains information for kids and teens about the process of grief and how to ultimately feel better.

  • As a compassionate member of the human race, it’s often necessary to reach out to others in their times of grief and loss. Use the following resources to help you know what to do.

    Grief: How to Support the Bereaved – This guide recommends approaching the grieving person within the first few days of their loss and offers advice on how to help them.

    How to Help a Grieving Person  – It’s difficult to know how help someone who is grieving. Find out how to support the bereaved.

    How to Help Someone Who is Grieving – This resource provides a series of helpful articles for support grieving parents, families, friends and coworkers.

    Helping a Grieving Parent  – Learn how to offer comfort to your surviving parent while working through your own grief.

    When an Employee or Coworker is Grieving the Death of a Child  – This article details how employers and coworkers can support a bereaved employee who has suffered the loss of a child.

    Helping Your Child Deal with Death – Discover helpful suggestions for assisting children with their understanding and acceptance of the death of a loved one.

    Guidelines for Parents to Help Their Children Through Grief – These guidelines are designed to help parents support their grieving child.

    The Grieving Teen – Find out how teens grieve and what they require in terms of grief support.

  • The Epilepsy Foundation has resources surrounding Sudden Unexpected Death in Epilepsy (SUDEP). They also have online bereavement support groups for families and individuals.

    Compassionate Friends provides families with grief resource materials upon request. A couple helpful resources specifically are Understanding Grief  and  To the Newly Bereaved.

    Child Bereavement UK provides support & guidance, video resources, training courses, and more to help navigate the bereavement journey.

    David Kessler developed a free online Course for Bereaved Parents that was designed to support and guide parents through the process of remembering with more love than pain after the death of a child. Bereaved Parents

  • The Dougy Center in Portland, OR, has a wide range of free resources for young children, teens, families, caregivers, and the broader community. You may find it helpful to use their program finder to find a support center near you. You can also visit their store that contains resources in both English and Spanish for purchase.

    National Alliance for Children’s Grief has a grief support library with support toolkits and talking point suggestions on talking about death to children. They also provide a support map to find local support groups near you.

    Child Neurology Foundation has resources and tools for understanding SUDEP.

  • Bereaved Families of Ontario offers resources and support groups.

    Canadian Virtual Hospice offers grief and bereavement services.

    Children’s Hospital of Eastern Ontario (CHEO) has a palliative care program and has compiled a list of additional support services/groups.

    Kids Grief provides resources that help equip parents with the words and confidence needed to help children grieve in healthy way.

Join our support network.

We are beginning quarterly meetups with bereaved family members. Casual, no agenda. Just connect and share. Reach out if you’d like an invitation.