Raising a Child with Autism: One Mother’s Journey MP PowerPoint Presentation.pdf · Overview of Presentation Description of Autism The day to day emotional challenges of parents

Raising a Child with Autism: Raising a Child with Autism: One MotherOne Mother’’s Journeys Journey

With Helpful Lessons for OthersWith Helpful Lessons for Others

Masters Project Presentation Masters Project Presentation by Tamara F. Phillips February 6by Tamara F. Phillips February 6thth, 2010, 2010

Overview of PresentationOverview of Presentation

Description of Autism 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 Journeyautism: My Personal JourneyImpact on parent functioning: The losses Impact on parent functioning: The losses and gainsand gainsChronic stressors: Daily and futureChronic stressors: Daily and futureCoping mechanisms: Positive and negativeCoping mechanisms: Positive and negative

Does Anyone Know How Prevalent Autism Does Anyone Know How Prevalent Autism Spectrum Disorder is in America Today?Spectrum Disorder is in America Today?

ASD Prevalence in AmericaASD 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 1 in 70 American boys

Understanding the LabelsUnderstanding the Labels

Pervasive developmental disorders (PDD) 299Pervasive developmental disorders (PDD) 299299.00 Autism299.00 Autism299.80 Asperger syndrome299.80 Asperger syndrome299.80 Rett syndrome299.80 Rett syndrome299.10 Childhood disintegrative disorder299.10 Childhood disintegrative disorder299.80 Pervasive developmental disorder not 299.80 Pervasive developmental disorder not

otherwise specified (PDDotherwise specified (PDD--NOS)NOS)

Definition of AutismDefinition 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 opposed to simply delay). These areas are opposed to simply delay). These areas are defined by the American psychiatric association defined by the American psychiatric association in the DSMin the DSM--IV as:IV as:

1.1. Qualitative impairment in social interactionQualitative impairment in social interaction2.2. Qualitative impairment in communicationQualitative impairment in communication3. Restricted, repetitive, and stereotyped 3. Restricted, repetitive, and stereotyped

patterns of behavior, interests, and activities.patterns of behavior, interests, and activities.

Additional CharacteristicsAdditional Characteristics

Repeated body movements: hand flappingRepeated body movements: hand flappingUnusual responses to people: Unusual responses to people: like an objectlike an object

Resistance to change in Routine: PatternsResistance to change in Routine: PatternsCognitive levels vary Cognitive levels vary Physical symptoms: Physical symptoms: Immune system, Immune system, digestive problems, Sensory systemdigestive problems, Sensory system

autism

Typical development

Developmental delay

Motor IQ lang.comp lang.expr social memory

120

100

80

60

Patterns of Development

Characteristics of ASDCharacteristics of ASD

Sensory Diet Sensory Diet Foods that are calmingFoods that are calmingWarmWarmSmoothSmoothSweetSweet

Foods that are alertingFoods that are alertingColdColdSour/tartSour/tartSpicySpicyMintyMintyCrunchyCrunchyChewyChewySaltySaltyCrunchyCrunchy--pretzelspretzelsChewyChewy--tubingtubingSuckingSucking--water bottlewater bottleBitingBiting--apple, carrotapple, carrotPullingPulling--licorice stringslicorice stringsFruit roll upsFruit roll upsSaltySalty--chips, popcornchips, popcornBlowingBlowing--through a strawthrough a strawSweetSweet--candy or dried fruitcandy or dried fruitSourSour--candy or picklecandy or pickleSpicySpicy--cinnamon or salsacinnamon or salsaLickingLicking--lollipop orlollipop orPopsiclePopsicleGumGum

Stay AlertStay AlertSensory Diet Sensory Diet –– Tactile ActivitiesTactile Activities

Sensory Bins Sensory Bins –– rice, beans, corn, sand, cotton balls, rice, beans, corn, sand, cotton balls, waterwater““BrushingBrushing””HugsHugsDeep pressure Deep pressure Shaving creamShaving creamLotionLotionBall pitBall pitFidgetsFidgets

Areas of Intense InterestAreas of Intense Interest

Examples: Examples: Trains Trains Maps Maps Sports facts Sports facts ToiletsToiletsATM machines ATM machines The number PiThe number PiRoller coastersRoller coasters

Who Is This?Who Is This?(Example of restricted, repetitive interests)(Example of restricted, repetitive interests)

Dante BascoDante Basco

Obsessions and FantasiesObsessions and Fantasies

From Bad to Worse!From Bad to Worse!

Circles Program for Boundary AwarenessCircles Program for Boundary Awareness(Impaired social Interaction)(Impaired social Interaction)

Purple Circle: SelfPurple Circle: SelfBlue 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 donOrange 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 donRed 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.

Current Treatment OptionsCurrent Treatment OptionsAre ChildAre Child FocusedFocused

Applied Behavior Analysis (ABA)Applied Behavior Analysis (ABA)Relationship Development Intervention Relationship Development Intervention (RDI)(RDI)FloortimeFloortimeBioBio--medical treatmentmedical treatmentPharmacology Pharmacology OthersOthers

Meds and SupplementsMeds and Supplements

What Happens After the DiagnosisWhat Happens After the Diagnosis

How ASD Impacts ParentsHow ASD Impacts Parents

Current treatment options focus on the Current treatment options focus on the diagnosed childdiagnosed childParents lack understanding of their own feelings Parents lack understanding of their own feelings Individuals may experience different feelings Individuals may experience different feelings from spousefrom spouseIsolate and drift apartIsolate and drift apartParents experience increased and chronic stressParents experience increased and chronic stressCouples experience increased marital discordCouples experience increased marital discord

Common FeelingsCommon Feelingsexperienced by parentsexperienced by parents

Exhaustion: Lack sleep, emotionally spentExhaustion: Lack sleep, emotionally spentOverwhelmed: Too many responsibilitiesOverwhelmed: Too many responsibilitiesInadequate: About own skillsInadequate: About own skillsHopeless: Will things ever get better?Hopeless: Will things ever get better?Resentful: Of those who have typical childrenResentful: Of those who have typical childrenFearful: For child about future or in communityFearful: For child about future or in communityAnger: Masking another feelingAnger: Masking another feelingGrief: Extreme sadness, Difficulty copingGrief: Extreme sadness, Difficulty copingBlame: Self for childBlame: Self for child’’s disabilitys disabilityGuilt: Did I do something wrong?Guilt: Did I do something wrong?Abandonment: Emotionally or physically isolatedAbandonment: Emotionally or physically isolatedLonely: Lack of understanding from others or few friendsLonely: Lack of understanding from others or few friendsDisappointmentDisappointmentEmbarrassmentEmbarrassmentJudged Judged

Rollercoaster of feelingsRollercoaster of feelings

Grief is often chronic and repetitiveGrief is often chronic and repetitiveFeelings 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 milestonescycle events or milestonesIt 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

Rollercoaster of FeelingsRollercoaster of Feelings

Grief and LossGrief and Loss

Grief: Our reaction to lossGrief: Our reaction to lossPsychological Psychological BehavioralBehavioralSocial Social Physical Physical

Loss: Deprivation or ceasing to have something Loss: Deprivation or ceasing to have something that we formerly possessed or were attached tothat we formerly possessed or were attached toLoss of DreamsLoss of Dreams

Loss of DreamsLoss of Dreams

A symbolic loss of something intangibleA symbolic loss of something intangibleThe 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

Autism Every Day VideoAutism Every Day Video

Autism Every DayMinutes: 7:00

http://www.youtube.com/watch?v=FDMMwG7RrFQ

Positive Coping StrategiesPositive Coping Strategies

Reframing personal goals and expectationsReframing personal goals and expectationsIncreasing knowledge about ASD Increasing knowledge about ASD Large social support networkLarge social support networkEngaging in regular activity based interaction with childEngaging in regular activity based interaction with childRediscovering important things in lifeRediscovering important things in lifePrayerPrayerExerciseExerciseFinding a creative outletFinding a creative outletTaking a break or getting respiteTaking a break or getting respiteUse of humorUse of humorDevelop positive Personality Traits: increased tolerance, Develop positive Personality Traits: increased tolerance, patience, and openpatience, and open--mindednessmindedness

Finding HumorFinding Humor““QuotesQuotes””

““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!””

““Ok, Mom, whatever you want, Ok, Mom, whatever you want, dude!dude!””

Negative Coping StrategiesNegative Coping Strategiesof parents and othersof parents and others

Escaping or AvoidingEscaping or AvoidingHoping for miracles, fantasiesHoping for miracles, fantasiesOvereatingOvereatingWorkaholicWorkaholicDrug usageDrug usageAvoiding othersAvoiding others

Distancing:Distancing:Pretending nothing happenedPretending nothing happenedTrying to forgetTrying to forgetMaking light of situationMaking light of situation

What Causes Parental Stress?What Causes Parental Stress?

Characteristic behaviors of childCharacteristic behaviors of childIntensity of needIntensity of needPerceived inadequacies in quality of Perceived inadequacies in quality of support service support service Finances: Autism is VERY expensiveFinances: Autism is VERY expensiveLack of clear and consistent information Lack of clear and consistent information about how to help childabout how to help child

Child Behavior that negatively Child Behavior that negatively Impacts ParentsImpacts Parents

Behavior that is outside the norm, dangerous, or Behavior that is outside the norm, dangerous, or developmentally below chronological agedevelopmentally below chronological ageDeficits in communication and socializationDeficits in communication and socializationUneven affectUneven affectAggressionAggressionNonNon--compliancecomplianceDeficits in functional living skillsDeficits in functional living skills

Stressors affect Our Lives in a Stressors affect Our Lives in a variety of waysvariety of ways

Decreased social life (couple and family)Decreased social life (couple and family)Restricted recreational opportunitiesRestricted recreational opportunitiesIncreased 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 ASDPriority and attention given to ASD

Examples of Stress:Examples of Stress:Vacation StressVacation Stress

““I want an edible souvenir!I want an edible souvenir!””

Example of Stress:Example of Stress:Financial ConcernsFinancial Concerns

Autism is expensiveAutism is expensive

Often only one parent is employed due to Often only one parent is employed due to care needs of childcare needs of child

Example of Stress:Example of Stress:Intensity of NeedIntensity of Need

Increased responsibilitiesIncreased responsibilitiesIncreased number of hours spent with Increased number of hours spent with childchildProlonged Infancy stage Prolonged Infancy stage Leads to Sacrificing employment, Leads to Sacrificing employment, education opportunities, or personal goalseducation opportunities, or personal goalsOften leads to social isolation for parentsOften leads to social isolation for parents

Changing Our EnvironmentChanging Our Environment

Example of Stressor:Example of Stressor:Inadequate Support ServicesInadequate Support Services

Inadequate environment Inadequate environment Lack of program choiceLack of program choiceUnder stimulating programmingUnder stimulating programmingLack of intervention aimed at increasing Lack of intervention aimed at increasing new skills and independencenew skills and independencePoorly educated staffPoorly educated staff

““Now, I donNow, I don’’t know what it should t know what it should be rated: Itbe rated: It’’s like Before Christ s like Before Christ ----Before PG 13!Before PG 13!””

(regarding the rating of an older PG (regarding the rating of an older PG rated movie)rated movie)

IsolationIsolation

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 othersmisunderstood by othersIndividuals with ASD are frequently Individuals with ASD are frequently

isolated and have difficulty making and isolated and have difficulty making and keeping friendskeeping friends

Program to Combat Isolation and Program to Combat Isolation and LonelinessLoneliness

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!Kinga, your rib is like a harp!””

Marriage ProblemsMarriage ProblemsDue to:Due to:

Increased marital discordIncreased marital discordEmotional IsolationEmotional IsolationPrioritization of child over relationshipPrioritization of child over relationshipLack of meaningful communicationLack of meaningful communication

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 adversityadversity

VideoVideo

Emotional Aspects of AutismEmotional Aspects of AutismThe Today Show; Minutes: 6:50The Today Show; Minutes: 6:50LowLow | | MediumMedium | | HighHigh

What Helps Decrease Stress?What Helps Decrease Stress?

Perceiving parenting as effectivePerceiving parenting as effectiveQuality support servicesQuality support servicesRedefining ideal about personal fulfillmentRedefining ideal about personal fulfillmentRedefining goalsRedefining goalsPlacing less emphasis on opinions of Placing less emphasis on opinions of othersothersSharing responsibilities between parentsSharing responsibilities between parents

ResiliencyResiliency

Some people are more resilient and may not be Some people are more resilient and may not be vulnerable to depression even when stressedvulnerable to depression even when stressedDifferences in coping mechanisms prior to ASD Differences in coping mechanisms prior to ASD impacts ability to deal with stressimpacts ability to deal with stressIndividuals 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 abilitiesconfidence in their problem solving abilities

Looking for InspirationLooking for Inspiration

Strengths Strengths

““II’’m combining Jewish culture m combining Jewish culture with my cleaning!with my cleaning!””

““I have more acne than I can I have more acne than I can afford!afford!””

““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?””

My Personal Coping Strategy: My Personal Coping Strategy:

CoCo--Founding a Charter SchoolFounding a Charter School

MissionMission

TheThe missionmission of Lionsgate Academyof Lionsgate Academyis to provide a transitionis to provide a transition--oriented and oriented and personalized learning program focusing personalized learning program focusing on secondary higheron secondary higher--functioning students functioning students on the autism spectrum, that supports on the autism spectrum, that supports their full potential, participation, and selftheir full potential, participation, and self--determination within their school, family determination within their school, family and community. and community.

Lionsgate HistoryLionsgate 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 programmingneed for different programmingThere was no public school model so new There was no public school model so new ground had to be forged for the designground had to be forged for the designDecided on a charter as the best way to Decided on a charter as the best way to serve the communityserve the communityGrassroots 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 autismin serving the students with autism

TuitionTuition--free public school, open to allfree public school, open to all

Funded by state and federal government, as Funded by state and federal government, as well as foundations, grants and giftswell as foundations, grants and gifts

Independent school managed by a school board Independent school managed by a school board elected by parents, teachers and staffelected by parents, teachers and staff

Mission driven and focused on a particular Mission driven and focused on a particular approach to educationapproach to educationChoice school for familiesChoice school for families

Accountable for student achievementAccountable for student achievement

What is a Charter What is a Charter School?School?

Requirements for a Requirements for a CharterCharter

Receive state approval through rigorous Receive state approval through rigorous application training and process over two yearsapplication training and process over two years

Demonstrate that school meets an educational, Demonstrate that school meets an educational, community and market needcommunity and market need

Obtain sponsor to oversee fiscal responsibility Obtain sponsor to oversee fiscal responsibility and academic quality: Adler Graduate Schooland academic quality: Adler Graduate School

Currently 152 Charter Schools in Minnesota Currently 152 Charter Schools in Minnesota serving over 33,000 studentsserving over 33,000 students

Our Core ValuesOur 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 professionalsand caring professionalsThat special and general educators will teach under That special and general educators will teach under conditions that support successconditions that support successTo 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 outcomesoutcomes

What Lionsgate Can DoWhat Lionsgate Can Do

StrengthStrength--based assessmentbased assessmentTransition programming (adulthood preparation)Transition programming (adulthood preparation)Standards Based IEPStandards Based IEP’’ssCompliance state and national educational standardsCompliance state and national educational standards

Better OutcomesBetter Outcomes

Dedication to lifeDedication to life--long learninglong learningTransition skills; functional living and academicsTransition skills; functional living and academicsSupportive environments for students & familiesSupportive environments for students & familiesCompassionate and well educated staff dedicated to Compassionate and well educated staff dedicated to understanding the disorderunderstanding the disorderOngoing best practices researchOngoing best practices researchFamily involvement on a variety of levelsFamily involvement on a variety of levelsAccess to the artsAccess to the artsAccess to social outlet for all studentsAccess to social outlet for all students

Methods UtilizedMethods Utilized

Sensory Integration Therapy (direct & Sensory Integration Therapy (direct & embedded)embedded)Speech TherapySpeech TherapyOccupational TherapyOccupational TherapyVisual strategies and supportsVisual strategies and supports

Social SkillsSocial Skills

Social skills training embedded in all programmingSocial skills training embedded in all programming

Utilizes both formal instruction and teachable Utilizes both formal instruction and teachable momentsmoments

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 practicesfriendships, and other relational practices

Positive behavioral supportsPositive 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 dayintegration and assessment throughout the day

Lionsgate Academy VideoLionsgate Academy Video

Lionsgate videosLionsgate videoswww.lionsgateacademy.orgwww.lionsgateacademy.org

http://www.kare11.com/news/local/morninghttp://www.kare11.com/news/local/mornings/sunrise_article.aspx?storyid=530001&cats/sunrise_article.aspx?storyid=530001&catid=16id=16

Minutes: 4:41 Minutes: 4:41

““DonDon’’t sing it Pal, save your opera t sing it Pal, save your opera for somewhere else!for somewhere else!””

ResourcesResources

Presenter: Tamara PhillipsPresenter: Tamara PhillipsContact info: Contact info: [email protected]@tamaraphillips.us