1. FASEout Project 2006 www.faseout.ca Addressing Burn-out through Grief and Loss: The Impact on Parents and Caregivers of Children with FASD

2. FASEout Project 2006 www.faseout.ca Grief/Stress: Delayed or inhibited Aware of the change/loss/event Aware of the change/loss/event Postpone active grieving or “feeling the feelings” Postpone active grieving or “feeling the feelings”

3. FASEout Project 2006 www.faseout.ca Grief /Stress: Chronic Continually exhibit intense reactions over an extended period of time Continually exhibit intense reactions over an extended period of time Inability to relinquish emotional attachments Inability to relinquish emotional attachments

4. FASEout Project 2006 www.faseout.ca Physical Manifestations of Grief/Stress Muscle weakness Muscle weakness Muscle tension Muscle tension Lack of energy, fatigue Lack of energy, fatigue Shortness of breath Shortness of breath Dry mouth Dry mouth

5. FASEout Project 2006 www.faseout.ca Behaviours Associated with Grief/Stress Changes in eating and sleeping patterns Changes in eating and sleeping patterns Absent-mindedness Absent-mindedness Social withdrawal Social withdrawal Distressing dreams Distressing dreams Mood swings (sadness, anger, irritability) Mood swings (sadness, anger, irritability) Crying/chronic anger and/or anxiety Crying/chronic anger and/or anxiety

6. FASEout Project 2006 www.faseout.ca Common Responses Associated with Loss/Stress Denial Denial Guilt Guilt Shame Shame Grief Grief Psychosomatic manifestations Psychosomatic manifestations Reconsideration of life’s meaning Reconsideration of life’s meaning

7. FASEout Project 2006 www.faseout.ca Losses Experienced by Family Members Sense of the ‘natural’ process Sense of the ‘natural’ process Self-esteem and confidence Self-esteem and confidence Balanced family system Balanced family system Support from family, friends, community Support from family, friends, community Hopes and dreams Hopes and dreams

8. FASEout Project 2006 www.faseout.ca Losses Experienced by Family Members Freedom, privacy Freedom, privacy Security about the future Security about the future Employment Employment Financial security Financial security Pets Pets Roles Roles Child through placement, running away, leaving the family, suicide, death Child through placement, running away, leaving the family, suicide, death Faith Faith Progressive losses: autonomy, independence, dignity and privacy Progressive losses: autonomy, independence, dignity and privacy

9. FASEout Project 2006 www.faseout.ca Parents and caregivers also grieve the losses of their children

10. FASEout Project 2006 www.faseout.ca Losses Experienced by Persons with FASD Potential Potential The ability to move along in life like everyone else The ability to move along in life like everyone else Self-esteem and confidence Self-esteem and confidence Security about the future Security about the future Friendships and intimate partnerships Friendships and intimate partnerships

11. FASEout Project 2006 www.faseout.ca Compounded Loss/Stress: Impact on Caregivers Compassion fatigue Compassion fatigue Depression, anxiety, hypochondria Depression, anxiety, hypochondria Combativeness, sensation of being on fast forward, inability to concentrate Combativeness, sensation of being on fast forward, inability to concentrate Worry, guilt, anxiety about other children Worry, guilt, anxiety about other children Relationship break-down Relationship break-down

12. FASEout Project 2006 www.faseout.ca Grief /Stress Overload Range of responses Range of responses Psychic numbing Psychic numbing Suspicion of “counterfeit nurturance” Suspicion of “counterfeit nurturance” Struggle for meaning Struggle for meaning Death imprint Death imprint

13. FASEout Project 2006 www.faseout.ca Risk Factors for Prolonged Grief/Stress History of multiple losses History of multiple losses History of incomplete management of grief History of incomplete management of grief Inadequate social support Inadequate social support Unrecognized or stigmatized loss Unrecognized or stigmatized loss Social isolation Social isolation

14. FASEout Project 2006 www.faseout.ca Caregivers of individuals affected by FASD live and breathe a form of chronic trauma-like permanent white-water turbulence with no firm ground. Caregivers of individuals affected by FASD live and breathe a form of chronic trauma-like permanent white-water turbulence with no firm ground.

15. FASEout Project 2006 www.faseout.ca Ongoing Process Attitudes towards life and death Attitudes towards life and death Expression of pain, suffering and grief Expression of pain, suffering and grief Acceptance of outside help Acceptance of outside help Expectations of family responsibilities Expectations of family responsibilities Gender roles Gender roles Ethnic, religious, cultural traditions and backgrounds Ethnic, religious, cultural traditions and backgrounds

16. FASEout Project 2006 www.faseout.ca Support to Individuals with FASD and Their Families Validate losses experienced Validate losses experienced Avoid “good parent/bad parent” issues Avoid “good parent/bad parent” issues Support confronting losses in a positive manner Support confronting losses in a positive manner Encourage communication Encourage communication

17. FASEout Project 2006 www.faseout.ca Taking Care of Yourself  Recognize the person’s strengths  Recognize the person’s particular challenges  Seek support  Forgive others  Respite, respite, respite

18. FASEout Project 2006 www.faseout.ca “Whatever you do, do not lose hope!!” (Yves, who lives with multiple disabilities) Hope for life, hope for change, hope for improved circumstances, hope for some time together, hope for a peaceful life…