Transcript Will I Ever Be Okay with This? Will I Ever Stop Crying?

Autism and the Grief “Cycle”
Crystal Emery
Karen Fairchild
UVU Autism Conference April 12, 2013
What Is Grief?
“The total response of the organism
to the process of change”
Change = Loss = Grief
 A change of circumstance
 Produces a loss of some kind
 Which produces a grief reaction
BOOK
Tear Soup
By Pat Schwiebert
When Do We Experience Grief?
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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
Non-overt Losses
“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
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
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 shocked
anxious
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.”
Family Adaptation
DEMANDS
over time
PROCESS
over time
Family Schema
Appraisal
Family Meaning
Family Crisis
Situation
Pile-up:
Stressors
Strains
Transitions
Family Types
And
Newly Instituted
Patterns of
Functioning
Situational
Appraisal
Family’s
Capability
Family
Resources
OUTCOME
Bonadaptation
Problem
Solving and
Coping
Maladaptation
Social Support
(McCubbin & Patterson, 1983)
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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
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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
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Pride in teaching their sibling
Higher self-esteem, empathy, maturity
Take lead role in relationship
Less quarreling and competition than
disability
Positive adjustment, particularly for sisters
families without
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.
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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.
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 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.
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 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
???
Contact Info
 Karen Fairchild, LCSW
 801-221-9930, ex. 160
 [email protected]
 Crystal Emery, EI2
 801-376-6012
 [email protected]