Phillips MP PowerPoint Presentation

Raising a Child with Autism:
One Mother’s Journey
With Helpful Lessons for Others
Masters Project Presentation
by Tamara F. Phillips February 6th, 2010
Overview of Presentation
„ Description
of Autism
„ The day to day emotional challenges of
parents raising children diagnosed with
autism: My Personal Journey
„ Impact on parent functioning: The losses
and gains
„ Chronic stressors: Daily and future
„ Coping mechanisms: Positive and negative
Does Anyone Know How Prevalent Autism
Spectrum Disorder is in America Today?
ASD Prevalence in America
According to the CDC in a 2009 report:
„1
in 110 American children
„ 1 in 70 American boys
Understanding the Labels
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Pervasive developmental disorders (PDD) 299
299.00 Autism
299.80 Asperger syndrome
299.80 Rett syndrome
299.10 Childhood disintegrative disorder
299.80 Pervasive developmental disorder not
otherwise specified (PDD-NOS)
Definition of Autism
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Autism is a developmental disability that is
diagnosed based on three areas of disorder (as
opposed to simply delay). These areas are
defined by the American psychiatric association
in the DSM-IV as:
1. Qualitative impairment in social interaction
2. Qualitative impairment in communication
3. Restricted, repetitive, and stereotyped
patterns of behavior, interests, and activities.
Additional Characteristics
„ Repeated
body movements: hand flapping
„ Unusual responses to people: like an object
„ Resistance to change in Routine: Patterns
„ Cognitive levels vary
„ Physical symptoms: Immune system,
digestive problems, Sensory system
Patterns of Development
120
Typical development
100
autism
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Developmental delay
Motor
IQ lang.comp lang.expr
social
memory
Characteristics of ASD
Sensory Diet
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Foods that are calming
Warm
Smooth
Sweet
Foods that are alerting
Cold
Sour/tart
Spicy
Minty
Crunchy
Chewy
Salty
CrunchyCrunchy-pretzels
ChewyChewy-tubing
SuckingSucking-water bottle
BitingBiting-apple, carrot
PullingPulling-licorice strings
Fruit roll ups
SaltySalty-chips, popcorn
BlowingBlowing-through a straw
SweetSweet-candy or dried fruit
SourSour-candy or pickle
SpicySpicy-cinnamon or salsa
LickingLicking-lollipop or
Popsicle
Gum
Stay Alert
Sensory Diet – Tactile Activities
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Sensory Bins – rice, beans, corn, sand, cotton balls,
water
“Brushing”
Hugs
Deep pressure
Shaving cream
Lotion
Ball pit
Fidgets
Areas of Intense Interest
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Examples:
Trains
Maps
Sports facts
Toilets
ATM machines
The number Pi
Roller coasters
Who Is This?
(Example of restricted, repetitive interests)
Dante Basco
Obsessions and Fantasies
From Bad to Worse!
Circles Program for Boundary Awareness
(Impaired social Interaction)
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Purple Circle: Self
Blue Circle: Hugs are usually ok, sometimes a kiss on
the cheek (Family and very close Family Friends)
Green Circle: I can give side hugs to these people (Close
staff, Friends I know really, really well).
Yellow Circle: I see these people a lot. I can give them
a High 5 or a hand shake.
Orange Circle: I don’t see these people very often. I
can wave or say hello when I see them. This could be
the mail carrier or worker in the store.
Red Circle: These people are strangers and I don’t know
them at all. Most of the time I do not talk to strangers
about anything.
Current Treatment Options
Are Child Focused
„ Applied
Behavior Analysis (ABA)
„ Relationship Development Intervention
(RDI)
„ Floortime
„ Bio-medical treatment
„ Pharmacology
„ Others
Meds and Supplements
What Happens After the Diagnosis
How ASD Impacts Parents
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Current treatment options focus on the
diagnosed child
Parents lack understanding of their own feelings
Individuals may experience different feelings
from spouse
Isolate and drift apart
Parents experience increased and chronic stress
Couples experience increased marital discord
Common Feelings
experienced by parents
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Exhaustion: Lack sleep, emotionally spent
Overwhelmed: Too many responsibilities
Inadequate: About own skills
Hopeless: Will things ever get better?
Resentful: Of those who have typical children
Fearful: For child about future or in community
Anger: Masking another feeling
Grief: Extreme sadness, Difficulty coping
Blame: Self for child’s disability
Guilt: Did I do something wrong?
Abandonment: Emotionally or physically isolated
Lonely: Lack of understanding from others or few friends
Disappointment
Embarrassment
Judged
Rollercoaster of feelings
„ Grief
is often chronic and repetitive
„ Feelings may resurface both at predictable
and unpredictable times, often around life
cycle events or milestones
„ It is healthy to acknowledge these feelings
when they arise
„ Spouses have different responses to loss
Rollercoaster of Feelings
Grief and Loss
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Grief: Our reaction to loss
Psychological
Behavioral
Social
Physical
Loss: Deprivation or ceasing to have something
that we formerly possessed or were attached to
Loss of Dreams
Loss of Dreams
„A
symbolic loss of something intangible
„ The degree of personal investment placed
in a dream that subsequently gets
shattered correlates with the severity of
the grief experienced.
„ Feelings commonly go unrecognized
Autism Every Day Video
Autism Every Day
Minutes: 7:00
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Positive Coping Strategies
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Reframing personal goals and expectations
Increasing knowledge about ASD
Large social support network
Engaging in regular activity based interaction with child
Rediscovering important things in life
Prayer
Exercise
Finding a creative outlet
Taking a break or getting respite
Use of humor
Develop positive Personality Traits: increased tolerance,
patience, and open-mindedness
Finding Humor
“Quotes”
“Hey Mom, you wore that shirt
when you were pregnant,
because I remember being behind
it!”
“Ok, Mom, whatever you want,
dude!”
Negative Coping Strategies
of parents and others
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Escaping or Avoiding
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Hoping for miracles, fantasies
Overeating
Workaholic
Drug usage
Avoiding others
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Distancing:
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Pretending nothing happened
Trying to forget
Making light of situation
What Causes Parental Stress?
„ Characteristic
behaviors of child
„ Intensity of need
„ Perceived inadequacies in quality of
support service
„ Finances: Autism is VERY expensive
„ Lack of clear and consistent information
about how to help child
Child Behavior that negatively
Impacts Parents
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Behavior that is outside the norm, dangerous, or
developmentally below chronological age
Deficits in communication and socialization
Uneven affect
Aggression
Non-compliance
Deficits in functional living skills
Stressors affect Our Lives in a
variety of ways
„ Decreased
social life (couple and family)
„ Restricted recreational opportunities
„ Increased isolation (individual and family)
„ Increased marital discord
„ Increased mental and physical health
problems (mothers often more depressed)
„ Priority and attention given to ASD
Examples of Stress:
Vacation Stress
“I want an edible souvenir!”
Example of Stress:
Financial Concerns
„ Autism
„ Often
is expensive
only one parent is employed due to
care needs of child
Example of Stress:
Intensity of Need
„ Increased
responsibilities
„ Increased number of hours spent with
child
„ Prolonged Infancy stage
„ Leads to Sacrificing employment,
education opportunities, or personal goals
„ Often leads to social isolation for parents
Changing Our Environment
Example of Stressor:
Inadequate Support Services
„ Inadequate
environment
„ Lack of program choice
„ Under stimulating programming
„ Lack of intervention aimed at increasing
new skills and independence
„ Poorly educated staff
“Now, I don’t know what it should
be rated: It’s like Before Christ -Before PG 13!”
(regarding the rating of an older PG
rated movie)
Isolation
Families living with ASD are often more
isolated due to their circumstances
„ Out of necessity, parents often over focus on autism which may be
misunderstood by others
„ Individuals with ASD are frequently
isolated and have difficulty making and
keeping friends
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Program to Combat Isolation and
Loneliness
Every child
needs a circle
of friends,
Every parent
needs a circle
of support,
Every family
needs to be
part of a
community.
“Kinga, your rib is like a harp!”
Marriage Problems
Due to:
„ Increased
marital discord
„ Emotional Isolation
„ Prioritization of child over relationship
„ Lack of meaningful communication
„ Couples
are disconnected on an emotional
and intimate level and live with daily
adversity
Video
Emotional Aspects of Autism
The Today Show; Minutes: 6:50
Low | Medium | High
What Helps Decrease Stress?
„ Perceiving
parenting as effective
„ Quality support services
„ Redefining ideal about personal fulfillment
„ Redefining goals
„ Placing less emphasis on opinions of
others
„ Sharing responsibilities between parents
Resiliency
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Some people are more resilient and may not be
vulnerable to depression even when stressed
Differences in coping mechanisms prior to ASD
impacts ability to deal with stress
Individuals who are more resilient get to the
root of the problem
Understand that problems will pass and have
confidence in their problem solving abilities
Looking for Inspiration
Strengths
“I’m combining Jewish culture
with my cleaning!”
“I have more acne than I can
afford!”
“Can you act like a Jewish person
since you are living with me?”
My Personal Coping Strategy:
Co-Founding a Charter School
Mission
The mission of Lionsgate Academy
is to provide a transition-oriented and
personalized learning program focusing
on secondary higher-functioning students
on the autism spectrum, that supports
their full potential, participation, and selfdetermination within their school, family
and community.
Lionsgate History
„ Bernadette
Groh, RN, and Tamara Phillips,
both mothers of a child with autism saw a
need for different programming
„ There was no public school model so new
ground had to be forged for the design
„ Decided on a charter as the best way to
serve the community
„ Grassroots origins but expanded to include
many professionals and educators involved
in serving the students with autism
What is a Charter
School?
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Tuition-free public school, open to all
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Funded by state and federal government, as
well as foundations, grants and gifts
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Independent school managed by a school board
elected by parents, teachers and staff
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Mission driven and focused on a particular
approach to education
Choice school for families
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Accountable for student achievement
Requirements for a
Charter
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Receive state approval through rigorous
application training and process over two years
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Demonstrate that school meets an educational,
community and market need
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Obtain sponsor to oversee fiscal responsibility
and academic quality: Adler Graduate School
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Currently 152 Charter Schools in Minnesota
serving over 33,000 students
Our Core Values
That every child with exceptionalities receive
individualized services and supports from competent
and caring professionals
„ That special and general educators will teach under
conditions that support success
„ To ensure that all students attending Lionsgate
Academy will achieve high and challenging learning
outcomes
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What Lionsgate Can Do
Strength-based assessment
„ Transition programming (adulthood preparation)
„ Standards Based IEP’s
„ Compliance state and national educational standards
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Better Outcomes
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Dedication to life-long learning
Transition skills; functional living and academics
Supportive environments for students & families
Compassionate and well educated staff dedicated to
understanding the disorder
Ongoing best practices research
Family involvement on a variety of levels
Access to the arts
Access to social outlet for all students
Methods Utilized
„ Sensory
Integration Therapy (direct &
embedded)
„ Speech Therapy
„ Occupational Therapy
„ Visual strategies and supports
Social Skills
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Social skills training embedded in all programming
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Utilizes both formal instruction and teachable
moments
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Skill areas targeted include understanding basic
social rules and mores, conversation, organization,
friendships, and other relational practices
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Positive behavioral supports
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Staff trained in best practice models to ensure skills
integration and assessment throughout the day
Lionsgate Academy Video
Lionsgate videos
www.lionsgateacademy.org
http://www.kare11.com/news/local/morning
s/sunrise_article.aspx?storyid=530001&cat
id=16
Minutes: 4:41
“Don’t sing it Pal, save your opera
for somewhere else!”
Resources
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Presenter: Tamara Phillips
Contact info: [email protected]