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

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Dec 13, 2013 (3 years and 10 months ago)

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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?


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





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.”

22

DEMANDS


over time

PROCESS

over time

OUTCOME

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


???

Contact Info


Karen Fairchild, LCSW


801
-
221
-
9930, ex. 160


kfairchild@kotm.org




Crystal Emery, EI2


801
-
376
-
6012


crystale@esgw.org