SLIDE 1 Raising a Child with Autism: Raising a Child with Autism: One Mother One Mother’ ’s Journey s Journey
With Helpful Lessons for Others With Helpful Lessons for Others
Masters Project Presentation Masters Project Presentation by Tamara F. Phillips February 6 by Tamara F. Phillips February 6th
th, 2010
, 2010
SLIDE 2 Overview of Presentation Overview of Presentation
Description of Autism
- The day to day emotional challenges of
The day to day emotional challenges of parents raising children diagnosed with parents raising children diagnosed with autism: My Personal Journey autism: My Personal Journey
- Impact on parent functioning: The losses
Impact on parent functioning: The losses and gains and gains
- Chronic stressors: Daily and future
Chronic stressors: Daily and future
- Coping mechanisms: Positive and negative
Coping mechanisms: Positive and negative
SLIDE 3
Does Anyone Know How Prevalent Autism Does Anyone Know How Prevalent Autism Spectrum Disorder is in America Today? Spectrum Disorder is in America Today?
SLIDE 4 ASD Prevalence in America ASD Prevalence in America
According to the CDC in a 2009 report: According to the CDC in a 2009 report:
- 1 in 110 American children
1 in 110 American children
1 in 70 American boys
SLIDE 5 Understanding the Labels Understanding the Labels
- Pervasive developmental disorders (PDD) 299
Pervasive developmental disorders (PDD) 299
299.00 Autism
299.80 Asperger syndrome
299.80 Rett syndrome
- 299.10 Childhood disintegrative disorder
299.10 Childhood disintegrative disorder
- 299.80 Pervasive developmental disorder not
299.80 Pervasive developmental disorder not
- therwise specified (PDD
- therwise specified (PDD-
- NOS)
NOS)
SLIDE 6 Definition of Autism Definition of Autism
- Autism is a developmental disability that is
Autism is a developmental disability that is diagnosed based on three areas of disorder (as diagnosed based on three areas of disorder (as
- pposed to simply delay). These areas are
- pposed to simply delay). These areas are
defined by the American psychiatric association defined by the American psychiatric association in the DSM in the DSM-
IV as:
1.
- 1. Qualitative impairment in social interaction
Qualitative impairment in social interaction 2.
- 2. Qualitative impairment in communication
Qualitative impairment in communication
- 3. Restricted, repetitive, and stereotyped
- 3. Restricted, repetitive, and stereotyped
patterns of behavior, interests, and activities. patterns of behavior, interests, and activities.
SLIDE 7 Additional Characteristics Additional Characteristics
- Repeated body movements: hand flapping
Repeated body movements: hand flapping
- Unusual responses to people:
Unusual responses to people: like an object
like an object
- Resistance to change in Routine: Patterns
Resistance to change in Routine: Patterns
Cognitive levels vary
Physical symptoms: Immune system,
Immune system, digestive problems, Sensory system digestive problems, Sensory system
SLIDE 8 autism Typical development Developmental delay Motor IQ lang.comp lang.expr social memory 120 100 80 60
Patterns of Development
SLIDE 9
Characteristics of ASD Characteristics of ASD
SLIDE 10 Sensory Diet Sensory Diet
Foods that are calming
Warm
Smooth
Sweet
Foods that are alerting
Cold
Sour/tart
Spicy
Minty
Crunchy
Chewy
Salty
Crunchy-
pretzels
Chewy-
tubing
Sucking-
water bottle
Biting-
apple, carrot
Pulling-
licorice strings
Fruit roll ups
Salty-
chips, popcorn
Blowing-
through a straw
Sweet-
candy or dried fruit
Sour-
candy or pickle
Spicy-
cinnamon or salsa
Licking-
lollipop or
Popsicle
Gum
SLIDE 11 Stay Alert Stay Alert
Sensory Diet Sensory Diet – – Tactile Activities Tactile Activities
Sensory Bins – – rice, beans, corn, sand, cotton balls, rice, beans, corn, sand, cotton balls, water water
“Brushing Brushing” ”
Hugs
Deep pressure
Shaving cream
Lotion
Ball pit
Fidgets
SLIDE 12 Areas of Intense Interest Areas of Intense Interest
Examples: Examples:
Trains
Maps
Sports facts
Toilets
ATM machines
The number Pi
Roller coasters
SLIDE 13
Who Is This? Who Is This?
(Example of restricted, repetitive interests) (Example of restricted, repetitive interests)
SLIDE 14
Dante Basco Dante Basco
SLIDE 15
Obsessions and Fantasies Obsessions and Fantasies
SLIDE 16
From Bad to Worse! From Bad to Worse!
SLIDE 17 Circles Program for Boundary Awareness Circles Program for Boundary Awareness
(Impaired social Interaction) (Impaired social Interaction)
Purple Circle: Self
- Blue Circle: Hugs are usually ok, sometimes a kiss on
Blue Circle: Hugs are usually ok, sometimes a kiss on the cheek (Family and very close Family Friends) the cheek (Family and very close Family Friends)
- Green Circle: I can give side hugs to these people (Close
Green Circle: I can give side hugs to these people (Close staff, Friends I know really, really well). staff, Friends I know really, really well).
- Yellow Circle: I see these people a lot. I can give them
Yellow Circle: I see these people a lot. I can give them a High 5 or a hand shake. a High 5 or a hand shake.
Orange Circle: I don’ ’t see these people very often. I t see these people very often. I can wave or say hello when I see them. This could be can wave or say hello when I see them. This could be the mail carrier or worker in the store. the mail carrier or worker in the store.
- Red Circle: These people are strangers and I don
Red Circle: These people are strangers and I don’ ’t know t know them at all. Most of the time I do not talk to strangers them at all. Most of the time I do not talk to strangers about anything. about anything.
SLIDE 18 Current Treatment Options Current Treatment Options
Are Child Are Child Focused Focused
- Applied Behavior Analysis (ABA)
Applied Behavior Analysis (ABA)
- Relationship Development Intervention
Relationship Development Intervention (RDI) (RDI)
Floortime
Bio-
medical treatment
Pharmacology
Others
SLIDE 19
Meds and Supplements Meds and Supplements
SLIDE 20
What Happens After the Diagnosis What Happens After the Diagnosis
SLIDE 21 How ASD Impacts Parents How ASD Impacts Parents
- Current treatment options focus on the
Current treatment options focus on the diagnosed child diagnosed child
- Parents lack understanding of their own feelings
Parents lack understanding of their own feelings
- Individuals may experience different feelings
Individuals may experience different feelings from spouse from spouse
Isolate and drift apart
- Parents experience increased and chronic stress
Parents experience increased and chronic stress
- Couples experience increased marital discord
Couples experience increased marital discord
SLIDE 22 Common Feelings Common Feelings
experienced by parents experienced by parents
- Exhaustion: Lack sleep, emotionally spent
Exhaustion: Lack sleep, emotionally spent
- Overwhelmed: Too many responsibilities
Overwhelmed: Too many responsibilities
- Inadequate: About own skills
Inadequate: About own skills
- Hopeless: Will things ever get better?
Hopeless: Will things ever get better?
- Resentful: Of those who have typical children
Resentful: Of those who have typical children
- Fearful: For child about future or in community
Fearful: For child about future or in community
- Anger: Masking another feeling
Anger: Masking another feeling
- Grief: Extreme sadness, Difficulty coping
Grief: Extreme sadness, Difficulty coping
Blame: Self for child’ ’s disability s disability
- Guilt: Did I do something wrong?
Guilt: Did I do something wrong?
- Abandonment: Emotionally or physically isolated
Abandonment: Emotionally or physically isolated
- Lonely: Lack of understanding from others or few friends
Lonely: Lack of understanding from others or few friends
Disappointment
Embarrassment
Judged
SLIDE 23 Rollercoaster of feelings Rollercoaster of feelings
- Grief is often chronic and repetitive
Grief is often chronic and repetitive
- Feelings may resurface both at predictable
Feelings may resurface both at predictable and unpredictable times, often around life and unpredictable times, often around life cycle events or milestones cycle events or milestones
- It is healthy to acknowledge these feelings
It is healthy to acknowledge these feelings when they arise when they arise
- Spouses have different responses to loss
Spouses have different responses to loss
SLIDE 24
Rollercoaster of Feelings Rollercoaster of Feelings
SLIDE 25 Grief and Loss Grief and Loss
- Grief: Our reaction to loss
Grief: Our reaction to loss
Psychological
Behavioral
Social
Physical
- Loss: Deprivation or ceasing to have something
Loss: Deprivation or ceasing to have something that we formerly possessed or were attached to that we formerly possessed or were attached to
Loss of Dreams
SLIDE 26 Loss of Dreams Loss of Dreams
- A symbolic loss of something intangible
A symbolic loss of something intangible
- The degree of personal investment placed
The degree of personal investment placed in a dream that subsequently gets in a dream that subsequently gets shattered correlates with the severity of shattered correlates with the severity of the grief experienced. the grief experienced.
- Feelings commonly go unrecognized
Feelings commonly go unrecognized
SLIDE 27 Autism Every Day Video Autism Every Day Video
Autism Every Day
Minutes: 7:00 http://www.youtube.com/watch?v= FDMMwG7RrFQ
SLIDE 28 Positive Coping Strategies Positive Coping Strategies
- Reframing personal goals and expectations
Reframing personal goals and expectations
- Increasing knowledge about ASD
Increasing knowledge about ASD
- Large social support network
Large social support network
- Engaging in regular activity based interaction with child
Engaging in regular activity based interaction with child
- Rediscovering important things in life
Rediscovering important things in life
Prayer
Exercise
- Finding a creative outlet
Finding a creative outlet
- Taking a break or getting respite
Taking a break or getting respite
Use of humor
- Develop positive Personality Traits: increased tolerance,
Develop positive Personality Traits: increased tolerance, patience, and open patience, and open-
mindedness
SLIDE 29
Finding Humor Finding Humor “ “Quotes Quotes” ” “ “Hey Mom, you wore that shirt Hey Mom, you wore that shirt when you were pregnant, when you were pregnant, because I remember being behind because I remember being behind it! it!” ”
SLIDE 30
“ “Ok, Mom, whatever you want, Ok, Mom, whatever you want, dude! dude!” ”
SLIDE 31 Negative Coping Strategies Negative Coping Strategies
- f parents and others
- f parents and others
- Escaping or Avoiding
Escaping or Avoiding
- Hoping for miracles, fantasies
Hoping for miracles, fantasies
Overeating
Workaholic
Drug usage
Avoiding others
Distancing:
- Pretending nothing happened
Pretending nothing happened
Trying to forget
- Making light of situation
Making light of situation
SLIDE 32 What Causes Parental Stress? What Causes Parental Stress?
- Characteristic behaviors of child
Characteristic behaviors of child
Intensity of need
- Perceived inadequacies in quality of
Perceived inadequacies in quality of support service support service
- Finances: Autism is VERY expensive
Finances: Autism is VERY expensive
- Lack of clear and consistent information
Lack of clear and consistent information about how to help child about how to help child
SLIDE 33 Child Behavior that negatively Child Behavior that negatively Impacts Parents Impacts Parents
- Behavior that is outside the norm, dangerous, or
Behavior that is outside the norm, dangerous, or developmentally below chronological age developmentally below chronological age
- Deficits in communication and socialization
Deficits in communication and socialization
Uneven affect
Aggression
Non-
compliance
- Deficits in functional living skills
Deficits in functional living skills
SLIDE 34 Stressors affect Our Lives in a Stressors affect Our Lives in a variety of ways variety of ways
- Decreased social life (couple and family)
Decreased social life (couple and family)
- Restricted recreational opportunities
Restricted recreational opportunities
- Increased isolation (individual and family)
Increased isolation (individual and family)
- Increased marital discord
Increased marital discord
- Increased mental and physical health
Increased mental and physical health problems (mothers often more depressed) problems (mothers often more depressed)
- Priority and attention given to ASD
Priority and attention given to ASD
SLIDE 35
Examples of Stress: Examples of Stress: Vacation Stress Vacation Stress
SLIDE 36
“ “I want an edible souvenir! I want an edible souvenir!” ”
SLIDE 37 Example of Stress: Example of Stress: Financial Concerns Financial Concerns
Autism is expensive
- Often only one parent is employed due to
Often only one parent is employed due to care needs of child care needs of child
SLIDE 38 Example of Stress: Example of Stress: Intensity of Need Intensity of Need
- Increased responsibilities
Increased responsibilities
- Increased number of hours spent with
Increased number of hours spent with child child
Prolonged Infancy stage
- Leads to Sacrificing employment,
Leads to Sacrificing employment, education opportunities, or personal goals education opportunities, or personal goals
- Often leads to social isolation for parents
Often leads to social isolation for parents
SLIDE 39
Changing Our Environment Changing Our Environment
SLIDE 40 Example of Stressor: Example of Stressor: Inadequate Support Services Inadequate Support Services
Inadequate environment
Lack of program choice
- Under stimulating programming
Under stimulating programming
- Lack of intervention aimed at increasing
Lack of intervention aimed at increasing new skills and independence new skills and independence
Poorly educated staff
SLIDE 41 “ “Now, I don Now, I don’ ’t know what it should t know what it should be rated: It be rated: It’ ’s like Before Christ s like Before Christ --
Before PG 13!” ”
(regarding the rating of an older PG (regarding the rating of an older PG rated movie) rated movie)
SLIDE 42 Isolation Isolation
- Families living with ASD are often more
Families living with ASD are often more isolated due to their circumstances isolated due to their circumstances
- Out of necessity, parents often over
Out of necessity, parents often over -
- focus on autism which may be
focus on autism which may be misunderstood by others misunderstood by others
- Individuals with ASD are frequently
Individuals with ASD are frequently isolated and have difficulty making and isolated and have difficulty making and keeping friends keeping friends
SLIDE 43 Program to Combat Isolation and Program to Combat Isolation and Loneliness Loneliness
Every child needs a circle
Every parent needs a circle
Every family needs to be part of a community.
SLIDE 44
“ “Kinga, your rib is like a harp! Kinga, your rib is like a harp!” ”
SLIDE 45 Marriage Problems Marriage Problems Due to: Due to:
- Increased marital discord
Increased marital discord
Emotional Isolation
- Prioritization of child over relationship
Prioritization of child over relationship
- Lack of meaningful communication
Lack of meaningful communication
SLIDE 46
- Couples are disconnected on an emotional
Couples are disconnected on an emotional and intimate level and live with daily and intimate level and live with daily adversity adversity
SLIDE 47
Video Video
Emotional Aspects of Autism Emotional Aspects of Autism
The Today Show; Minutes: 6:50 The Today Show; Minutes: 6:50 Low Low | | Medium Medium | | High High
SLIDE 48 What Helps Decrease Stress? What Helps Decrease Stress?
- Perceiving parenting as effective
Perceiving parenting as effective
Quality support services
- Redefining ideal about personal fulfillment
Redefining ideal about personal fulfillment
Redefining goals
- Placing less emphasis on opinions of
Placing less emphasis on opinions of
- thers
- thers
- Sharing responsibilities between parents
Sharing responsibilities between parents
SLIDE 49 Resiliency Resiliency
- Some people are more resilient and may not be
Some people are more resilient and may not be vulnerable to depression even when stressed vulnerable to depression even when stressed
- Differences in coping mechanisms prior to ASD
Differences in coping mechanisms prior to ASD impacts ability to deal with stress impacts ability to deal with stress
- Individuals who are more resilient get to the
Individuals who are more resilient get to the root of the problem root of the problem
- Understand that problems will pass and have
Understand that problems will pass and have confidence in their problem solving abilities confidence in their problem solving abilities
SLIDE 50
Looking for Inspiration Looking for Inspiration
SLIDE 51
Strengths Strengths
SLIDE 52
“ “I I ’ ’m combining Jewish culture m combining Jewish culture with my cleaning! with my cleaning!” ”
SLIDE 53
“ “I have more acne than I can I have more acne than I can afford! afford!” ”
SLIDE 54
“ “Can you act like a Jewish person Can you act like a Jewish person since you are living with me? since you are living with me?” ”
SLIDE 55
My Personal Coping Strategy: My Personal Coping Strategy:
SLIDE 56 Co Co-
- Founding a Charter School
Founding a Charter School
SLIDE 57 Mission Mission
The The mission mission of Lionsgate Academy
is to provide a transition is to provide a transition-
personalized learning program focusing personalized learning program focusing
- n secondary higher
- n secondary higher-
- functioning students
functioning students
- n the autism spectrum, that supports
- n the autism spectrum, that supports
their full potential, participation, and self their full potential, participation, and self-
- determination within their school, family
determination within their school, family and community. and community.
SLIDE 58 Lionsgate History Lionsgate History
- Bernadette Groh, RN, and Tamara Phillips,
Bernadette Groh, RN, and Tamara Phillips, both mothers of a child with autism saw a both mothers of a child with autism saw a need for different programming need for different programming
- There was no public school model so new
There was no public school model so new ground had to be forged for the design ground had to be forged for the design
- Decided on a charter as the best way to
Decided on a charter as the best way to serve the community serve the community
- Grassroots origins but expanded to include
Grassroots origins but expanded to include many professionals and educators involved many professionals and educators involved in serving the students with autism in serving the students with autism
SLIDE 59
Tuition-
- free public school, open to all
free public school, open to all
- Funded by state and federal government, as
Funded by state and federal government, as well as foundations, grants and gifts well as foundations, grants and gifts
- Independent school managed by a school board
Independent school managed by a school board elected by parents, teachers and staff elected by parents, teachers and staff
- Mission driven and focused on a particular
Mission driven and focused on a particular approach to education approach to education
- Choice school for families
Choice school for families
- Accountable for student achievement
Accountable for student achievement
What is a Charter What is a Charter School? School?
SLIDE 60 Requirements for a Requirements for a Charter Charter
- Receive state approval through rigorous
Receive state approval through rigorous application training and process over two years application training and process over two years
- Demonstrate that school meets an educational,
Demonstrate that school meets an educational, community and market need community and market need
- Obtain sponsor to oversee fiscal responsibility
Obtain sponsor to oversee fiscal responsibility and academic quality: Adler Graduate School and academic quality: Adler Graduate School
- Currently 152 Charter Schools in Minnesota
Currently 152 Charter Schools in Minnesota serving over 33,000 students serving over 33,000 students
SLIDE 61 Our Core Values Our Core Values
- That every child with exceptionalities receive
That every child with exceptionalities receive individualized services and supports from competent individualized services and supports from competent and caring professionals and caring professionals
- That special and general educators will teach under
That special and general educators will teach under conditions that support success conditions that support success
- To ensure that all students attending Lionsgate
To ensure that all students attending Lionsgate Academy will achieve high and challenging learning Academy will achieve high and challenging learning
SLIDE 62 What Lionsgate Can Do What Lionsgate Can Do
Strength-
based assessment
- Transition programming (adulthood preparation)
Transition programming (adulthood preparation)
Standards Based IEP’ ’s s
- Compliance state and national educational standards
Compliance state and national educational standards
SLIDE 63 Better Outcomes Better Outcomes
Dedication to life-
long learning
- Transition skills; functional living and academics
Transition skills; functional living and academics
- Supportive environments for students & families
Supportive environments for students & families
- Compassionate and well educated staff dedicated to
Compassionate and well educated staff dedicated to understanding the disorder understanding the disorder
- Ongoing best practices research
Ongoing best practices research
- Family involvement on a variety of levels
Family involvement on a variety of levels
Access to the arts
- Access to social outlet for all students
Access to social outlet for all students
SLIDE 64 Methods Utilized Methods Utilized
- Sensory Integration Therapy (direct &
Sensory Integration Therapy (direct & embedded) embedded)
Speech Therapy
Occupational Therapy
- Visual strategies and supports
Visual strategies and supports
SLIDE 65 Social Skills Social Skills
- Social skills training embedded in all programming
Social skills training embedded in all programming
- Utilizes both formal instruction and teachable
Utilizes both formal instruction and teachable moments moments
- Skill areas targeted include understanding basic
Skill areas targeted include understanding basic social rules and mores, conversation, organization, social rules and mores, conversation, organization, friendships, and other relational practices friendships, and other relational practices
- Positive behavioral supports
Positive behavioral supports
- Staff trained in best practice models to ensure skills
Staff trained in best practice models to ensure skills integration and assessment throughout the day integration and assessment throughout the day
SLIDE 66
Lionsgate Academy Video Lionsgate Academy Video
Lionsgate videos Lionsgate videos www.lionsgateacademy.org www.lionsgateacademy.org http://www.kare11.com/news/local/morning http://www.kare11.com/news/local/morning s/sunrise_article.aspx?storyid= 530001&cat s/sunrise_article.aspx?storyid= 530001&cat id= 16 id= 16 Minutes: 4:41 Minutes: 4:41
SLIDE 67
“ “Don Don’ ’t sing it Pal, save your opera t sing it Pal, save your opera for somewhere else! for somewhere else!” ”
SLIDE 68 Resources Resources
- Presenter: Tamara Phillips
Presenter: Tamara Phillips Contact info: Contact info: tamara@tamaraphillips.us tamara@tamaraphillips.us
