When Do We Experience Grief? Death Divorce Unmet expectations Loss of a job Move to another city Loss of control – perceived loss of control Having a child with special needs
“Although these losses don’t involve death, [people] undergo the same sense of change, disruption, and mourning.” --Maria Trozzi Talking With Children About Grief, 1999 Non-overt Losses
How Does This Apply To Parents of Children with Autism? Most parents will go through some form of this process. Mourning their lost expectations for their child. Sometimes the process occurs again and again with each missed milestone. We need to understand the process so we can recognize the signs and plan ways to go through it well.
Who experiences grief when a child is diagnosed with Autism? Parents Siblings Grandparents Aunts and Uncles Individual with Autism
Triggers that can set off Grief Milestones Prom Religious Advancements Younger siblings surpass Comparisons Comments/Advice Unmet expectations (even modified expectations)
“When a child is born with or develops some problems, parents mourn the loss of a healthy son or daughter. Grieving is one of the first experiences people have when they become parents of children with special needs. It can be scary. If people are unaware of the different feelings and stages of grieving, they can become frightened by their sudden, unexpected, strong emotions.” --Judith Loseff Lavin Special Kids Need Special Parents: A Resource for Parents of Children With Special Needs, 2001
The myth is that it is a cycle and that it ends.
Myths About The Grief Cycle It is a cycle A person must go through all stages to resolve their grief A person who isn’t progressing through the stages in sequence and in a timely manner needs professional help You can “recover” from grief
The Stages Of Grief Shock: Initial paralysis at hearing the bad news Denial: Trying to avoid the inevitable Anger: Frustrated outpouring of bottled-up emotion Bargaining: Seeking in vain for a way out
The Stages Of Grief Depression / Grieving: Final realization of the inevitable – usually the longest stage Testing: Seeking realistic solutions Acceptance: Finally finding the way forward This is where the work of grief begins
“The five stages…are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order…They were never meant to help tuck messy emotions into neat packages. They are responses to grief that many people have, but there is no typical response to loss as there is no typical loss. Our grief is as individual as our lives.” --David Kessler
Grief Is Work Grief work is the process of overcoming grief and adapting to life after loss. The goal of grief work is not to find ways to avoid or bypass emotional turmoil, but rather to work through the tasks and emotions of each stage of grief.
Grief Is Work The purpose of grief work is not to “get over” loss, but to adjust to its consequences, and restore balance. The work of grieving begins where the grief cycle leaves off – acceptance.
Three Stages of Grief Work Acclimation and Adjustment Emotional Immersion and Reconstruction Reclamation and Reconciliation
Common Reactions to Grief Thoughts and Physical Sensations Thought Patterns Disbelief Confusion Preoccupation Physical Sensations Fatigue Nausea Tightness in the forehead, throat, chest Hypersensitivity
Common Reactions to Grief Emotions The Feeling Checklist shockedanxious unhappy fuming remorseful joy
Common Reactions to Grief Behaviors Behaviors Sleep Disturbances Appetite Disturbances Absent-Minded Behavior Social Withdrawal Crying Restless Over-Activity
Take Care of Yourself Understand that “setbacks” are normal. The only “cure” for grief is time. Take care of yourself: Through self-expression Through physical self-care Through emotional self-care Through good social support Determine who really is part of your support system, moving beyond who you think SHOULD be part of your support system. “Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.”
22 DEMANDS over timePROCESSover timeOUTCOME Family Crisis Situation Family Types And Newly Instituted Patterns of Functioning Family Schema Appraisal Family Meaning Family Resources Problem Solving and Coping Maladaptation Bonadaptation Family Adaptation Pile-up: Stressors Strains Transitions Social Support Situational Appraisal Family’s Capability (McCubbin & Patterson, 1983)
Differences between Parents in Emotional Response It is crucial to accept that your partner will deal with his or her emotions very differently from you. First, accept differences in coping style without drawing conclusions about what it means. Second, aim (high) to embrace the emotional difference. If you are unable, aim for nonjudgmental tolerance.
Tips for Parents Learn to be the best advocate you can. Don’t push away your feelings. Try to have some semblance of an adult life. Appreciate the small victories that your child may achieve. Get involved with the Autism Community. From autismspeaks.org
Research on Siblings of Children with Autism Challenges Forming healthy bond with child with autism Vulnerable to behavior problems, speech and language disabilities, anxiety, depression, and other mood disorders Higher risk for ASD More difficulties than siblings of children with Down syndrome and non-disabled Strengths Pride in teaching their sibling Higher self-esteem, empathy, maturity Take lead role in relationship Less quarreling and competition than families without disability Positive adjustment, particularly for sisters Fisman et al., (1996); Kaminsky & Dewey (2001); Mandleco et al., (2003); Royers & Myche (1995),
Other Concerns Over-identification Embarrassment Guilt Isolation, Loneliness, and Loss Resentment Pressure to Achieve (Meyer & Vadasy, 2007)
Recommendations for Siblings Provide Information Hold regular family meetings to teach, discuss, and plan. Explain autism to siblings. Developmentally appropriate explanations about autism and implications Explain concepts of equal and fair. “Fair isn’t treating everyone the same; it’s treating each person the way that they need to be treated.” Teach siblings to play with each other. 27
Determine Family Roles and Responsibilities Help siblings accept the child’s role in the family. Provide the right to not be in the role of the parent. Demonstrate parental love and attention to all children. Provide appropriate share of family resources. Provide the right, particularly in adolescence, of access to time unencumbered by obligation to the sibling with autism. Provide the right to plan for and live a life on one’s own, including the right to choose whether or not they will take care of the sibling in old age. 28
Provide Emotional Support Set realistic expectations for siblings. Spend individual time with each child in the family. Model appropriate expressions of thoughts, concerns, and feelings. Create an open environment where siblings share thoughts, concerns, and wide range of emotions. Provide the right to be free of guilt regarding sibling with autism.
Provide Emotional Support (Cont…) Help siblings know they have a right to their own life. Avoid parental favoritism. Provide siblings with private space/time. Demonstrate positive interactions with child with autism.
Assure Social Support Assure that not everything needs to be done as a family. Encourage activities unique to them. Allow them to enjoy special outings with others—extended family, friends. Solicit help from family, friends, support groups. Provide opportunities to meet other siblings. Most siblings do very well! More compassionate Self-control (Dr. Tina Dyches, BYU) Cooperative (Dyches) Sometimes choose helping professions
Tips for Siblings Remember that you are not alone! Be proud of your brother or sister. Accept your anger but don’t live in it. Spend time with mom and dad alone. Find an activity you can do with your brother or sister. From autismspeaks.org
Tips for Grandparents and Extended Family Ask how you can be helpful. Seek out your own support. Be open and honest about the disorder. (Liberating!) Put judgment aside. Learn more about Autism. Carve out special time for each child. From autismspeaks.org
Group Discussion “Welcome to Holland” by Emily Perl Kingsley or “Welcome to Beirut” by Susan Rzucidlo ???