Special Topics: Grief and Loss (2) Curriculum Development Team:
Dorothy Badry, PhD, RSW Jamie Hickey, BA, MSW (c) Faculty of Social Work University of Calgary
Project Funder: Public Health Agency of Canada (2011-‐2014)
CHILDWELFARE.CA
& Child WelfareCommunity of Practice
The Caregiver Curriculum on FASD©
Special Topics Module 5.2
Concerns of Grief and Loss for Children and Caregivers
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Table of Contents
• IntroducTon to Grief and Loss • What is Grief? • 5 Stages of Grief • What Should I Do About Grief? • Tips for Caregivers • Caring for the Child With Grief
Grief and Loss
One important, yet oZen ignored, concern that affects both the caregiver and the child is grief and loss. FASD is a complex diagnosis for both the individual affected and his or her caregiver. The individual affected by FASD may struggle with physical, psychological, emoTonal and behavioral challenges while caregivers must manage the stress of obtaining appropriate medical appointments, advocaTng within the school system and providing behavioural supports at home.
Grief and Loss You may be surprised to see grief and loss addressed in this curriculum when so much of the focus is centered around the child’s potenTal. Indeed, children affected by FASD can thrive when provided with the right supports and guidance, however it is also important to acknowledge that the diagnosis of an FASD can also bring feelings of grief or a sense of loss. Not all people will experience grief and loss when receiving a diagnosis. For some, the diagnosis may bring feelings of relief while others may experience conflicTng feelings of both relief and grief. Every caregiver and every child will experience the process of receiving a diagnosis differently.
Grief and Loss
There is no ‘right’ or ‘wrong’ way to feel in the face of a diagnosis. The following secTon is intended to provide some brief informaTon regarding the feelings of grief and loss that may surround a diagnosis. If, on reading this secTon, you idenTfy that you or your child are having difficulTes in adjusTng aZer a diagnosis please contact your caseworker or invesTgate counseling services and/or support groups in your area.
Grief and Loss
Grief is a natural and normal response to loss. A diagnosis does not need to be terminal or even life threatening to bring about feelings of grief. A serious or life-‐long diagnosis can also bring about emoTons of sadness and loss. Individuals diagnosed with an FASD are beginning a journey on a very different path then that travelled by their peers. This new journey requires both the child and the caregiver to shiZ and reframe expectaTons.
Grief and Loss
As a caregiver, you may have envisioned a path for your child, imagined how their life would unfold and planned for the journey. Your child may have also imagined the future and set goals. This new journey may require the construcTon of new goals and aspiraTons. This change in journey represents a loss of expectaTons – the expectaTons that you and your child had built prior to diagnosis.
Grief and Loss You may have already heard of the “5 stages of grief” model listed below:
– Denial – Anger – Bargaining – Sadness/Depression – Acceptance
These stages were iniTally defined by Elizabeth Kubler-‐Ross and many people do experience one or more of these stages when they experience a loss. It is very important to note, however, that there is no right or wrong way to experience grief and loss. Many people ‘skip’ some of the stages or experience the stages out of order. For the purpose of this module the stages are included as a way to represent the wide variety of emoTons within the overall experience of grief.
Grief and Loss So, is grief harmful? Well, the answer to that quesTon depends on many things. Grief is a normal process. It is a natural human reacTon. Grief is not a “bad” emoTon or something to be feared. It is a normal response to an event that causes a severe life disrupTon and loss of the lifestyle, life path or life events you expected. Can grief be harmful? It certainly can be if it is experienced for a long Tme or experienced at extreme intensiTes. If you are concerned that your grief may be causing harm, we recommend that you speak with a mental health pracTToner immediately. Many services and support groups may be available and a mental health pracTToner will be the best person to advise you as to your opTons.
Grief and Loss While they can be painful, the situaTons that cause grief can also provide a tremendous opportunity for growth. Major life events, like a life-‐long diagnosis, demand acTon. Caregivers and children must come up with new goals and adaptaTons in the face of the new informaTon provided by the diagnosis. The discomfort that comes with grief assists us not only in saying goodbye to the old expectaTons but it inspires us to take acTon to remedy the feeling.
Think of a situaTon or problem that you have solved. Prior to the situaTon or problem being resolved, how did you feel? Go back in your mind to the Tme it was happening and think about what you did when faced with the problem. What acTons did you take? How did you feel aZer you took those acTons?
Grief and Loss What should I do if I, or the child I am caring for, is experiencing grief aNer a diagnosis? As menToned before, for severe or prolonged cases of grief and loss please contact your child’s caseworker or a mental health pracTToner to assess what resources and programs may be available. This secTon is not intended to address situaTons where grief is incapacitaTng (you or your child cannot complete your daily rouTne due to grief) or cases where severe mental health concerns are indicated (grief lasTng more than 6 months, symptoms of traumaTzaTon are present or suicidal thoughts/acTons are present) as these situaTons require immediate aSenTon by qualified medical and mental health pracTToners.
Grief and Loss Caregiver Support One of the best things you, as a caregiver experiencing grief, can do is engage in good self care. There will be a module later in this package with self-‐care suggesTons. In the face of crisis the importance of self-‐care is oZen ignored, but is imperaTve to understand that you cannot effec1vely support the child if you do not care for yourself. A few self-‐care suggesTons are listed below: • Take Tme to relax or engage in enjoyable acTviTes • Eat a balanced diet and set Tme aside to engage in exercise (even light
walking) • Engage your personal support network by asking for help when you need
it. • Talk to supporTve friends or family members • Take advantage of the respite care opportuniTes available • Seek counseling if you are feeling overwhelmed or distressed
Grief and Loss In addiTon to self-‐care, you may also want to begin assembling a network of support for the coming months. Diagnosis is the beginning of a new journey and you may find it helpful to speak with those who have travelled the post-‐diagnosis path. Ask your child’s caseworker or contact an agency that offers programming to individuals with FASD and ask if they can provide contact informaTon for caregivers who have gone through the process of diagnosis before. Many individuals and families have also self-‐published blogs and websites about their experiences aZer diagnosis.
Grief and Loss Your network of support can also involve friends and family members. As you reach out be prepared to provide some educaTon. Some people may not know what FASD is and others may be experiencing their own grief surrounding the diagnosis. If you have been given (or have found) good informaTon and resources be sure to provide copies to family members and supporTve friends. Keep in mind that many people may be unsure of how to help. It is important that you make your needs known. Look for ways to engage the unique talents and experiences of your support network. If you find yourself overwhelmed with caring inquiries choose a few key friends or family members who can distribute updates to everyone for you.
Grief and Loss
Keep a list or chart of who can provide what support along with their contact informaTon. This informaTon will not only help you, but is also important in the event of an emergency.
Grief and Loss
SupporOng the Child Providing support to child diagnosed with an FASD can be complex. As you read through the following secTon be mindful that due to differences in development and processing ability not all of the suggesTons will be appropriate for all children.
Grief and Loss Provide a safe environment – Provide a safe and secure environment for your child to express their feelings and emoTons surrounding the diagnosis. Do not pressure the child to talk if they are not ready. Instead, provide a warm and open home environment and model communicaTon skills with other family members. IdenTfy and name your emoTons and experiences out loud and listen to other family members when they do the same.
Grief and Loss Offer opportuniOes to talk – Invite the child to talk if they want to, but do not force them to engage. Offer opportuniTes for interacTon that are not focused around discussing grief and loss. Engage meaningfully in conversaTons about your child’s interests and minimize distracTons whenever possible. If your child does choose to talk about grief do not dismiss or shut down what they are saying. Support them by helping them to name their emoTons and work through their ideas and experiences. Listen to your child and validate what they are telling you.
Grief and Loss Engage in creaOve expression – If your child struggles with verbal skills or does not want to talk, offer opportuniTes for creaTve expression. Provide access to a variety of developmentally appropriate art supplies, including tacTle items (suggesTons include markers, play-‐dough, sTckers, colored paper, sparkles, old magazines to cut apart, paint, crayons, pencils, pom-‐poms, feathers, glue, beads, pasta shapes and buSons). Allow your child to freely experiment with these items and talk to them as they use them. Ask them about what they are making and the choices they are making. Look for opportuniTes to talk about emoTons during the acTvity.
Grief and Loss Emphasize opportuniOes – Encourage your child to talk about the things they would like to achieve and experience. For older children or teenagers, try a goal-‐mapping acTvity where you help them to break a large goal into smaller, achievable pieces. For younger children, try making a “dream board” with pictures that represent future goals.
Curious to learn more? • Check out these videos from the Alberta FASD Learning Series! – The Ongoing Face of Grief and Loss and the Theory Behind It -‐ hSp://www.youtube.com/watch?feature=player_embedded&v=xh5mhld9R3I
– Grief and Loss: Strategic Support for Clients -‐ hSp://www.youtube.com/watch?feature=player_embedded&v=SU5oU-‐Up3gw
– Understanding the Needs of the Caregiver: Psychological treatment and intervenOon -‐ hSp://www.youtube.com/watch?feature=player_embedded&v=j8edSEnIc0Y
References James, J. W., & Friedman, R. (1998). The grief recovery handbook: The ac1on
program for moving beyond death, divorce, and other losses. Harper Perennial. Kübler-‐Ross, E., Wessler, S., & Avioli, L. V. (1972). On death and dying. Jama, 221(2), 174-‐179.
The Caregiver Curriculum on FASD • Title: Caregiver Curriculum on FASD (Fetal Alcohol Spectrum Disorder) 2014 • Author: Dorothy Badry & Jamie Hickey in collaboraTon with the Tri Province FASD
Research Team • Format: pdf and Power point -‐ online topics and modules on the website
fasdchildwelfare.ca • Publisher: Faculty of Social Work, University of Calgary; Faculty of Social Work,
University of Manitoba & Children’s Aid Society of Toronto-‐Child Welfare InsTtute
• This project was funded by the Public Health Agency of Canada. • ISBN 978-‐0-‐88953-‐375-‐2© • Use of Material: This material can be freely shared and used with acknowledgment
using the citaTon below. • CitaOon: Badry, D., Hickey, J. & the Tri Province FASD Research Team (2014). Caregiver Curriculum on
FASD. Online: fasdchildwelfare.ca; Faculty of Social Work, University of Calgary; Faculty of Social Work, University of Manitoba & Children’s Aid Society of Toronto-‐Child Welfare InsTtute. Funder: Public Health Agency of Canada.