The Effects Of Autism on The Effects Of Autism on Siblings; How You Can Siblings; How You Can Support Their Current Support Their Current

and Future Needsand Future NeedsBy: Nicole Hadley, CCLSBy: Nicole Hadley, CCLSChild Life Specialist IIChild Life Specialist II

And And EDAC Outreach Programs EDAC Outreach Programs

Coordinator Coordinator

AgendaAgenda

Introduction to Child LifeIntroduction to Child Life Sibling’s reactions to Sibling’s reactions to

diagnosis or healthcare diagnosis or healthcare experienceexperience

Unusual opportunitiesUnusual opportunities Helping siblings and Helping siblings and

families cope families cope

Child Life SpecialistChild Life Specialist

Child Life Specialist at UC Irvine Medical Child Life Specialist at UC Irvine Medical Center are professionally certified Center are professionally certified (CCLS) and have Bachelor’s or Master’s (CCLS) and have Bachelor’s or Master’s degree in child life, child development, degree in child life, child development, or a related fieldor a related field

Child Life specialist have extensive Child Life specialist have extensive training in techniques that help children training in techniques that help children and families cope and gain a better and families cope and gain a better understanding of the healthcare understanding of the healthcare experiences or life-changing diagnosisexperiences or life-changing diagnosis

Common Reactions of Common Reactions of SiblingsSiblings

There are a variety of feelings and There are a variety of feelings and reactions about the reactions about the disability/health care needs family disability/health care needs family members may experience, and members may experience, and there are a number reasons why. there are a number reasons why. These depend upon the These depend upon the developmental level and the level developmental level and the level of perception the sibling/ family of perception the sibling/ family member may have towards the member may have towards the diagnosis or needs. These feelings diagnosis or needs. These feelings can and will change from day to can and will change from day to dayday

Factors that influence a Factors that influence a sibling’s reaction to disability sibling’s reaction to disability

or healthcare experienceor healthcare experience Age and developmental level.Age and developmental level. Seriousness of the need/where on the Seriousness of the need/where on the

spectrumspectrum Amount of time separated from parentsAmount of time separated from parents The amount of attention given to needsThe amount of attention given to needs The quality of explanations and answers The quality of explanations and answers

the healthy children receive to questionsthe healthy children receive to questions

Common Feelings of Common Feelings of SiblingsSiblings

AbandonmentAbandonment DisplacementDisplacement FearFear LonelinessLoneliness AngerAnger GuiltGuilt Over Over

IdentificationIdentification

Loss/GriefLoss/Grief Pressure to Pressure to

SucceedSucceed Increase Increase

ResponsibilityResponsibility ConfusionConfusion EmbarrassmenEmbarrassmen

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Common Expressions of Common Expressions of concerns and feelingsconcerns and feelings

More clinging or More clinging or dependency on dependency on parentsparents

Eating changesEating changes Withdrawing Withdrawing Acting out or Acting out or

misbehavingmisbehaving Showing outburst of Showing outburst of

stored feelingsstored feelings RegressionRegression Sibling RivalrySibling Rivalry

Display feelings of Display feelings of jealously and jealously and competitioncompetition

Declining school Declining school performanceperformance

Socially withdrawn Socially withdrawn Becoming withdrawn Becoming withdrawn

from the family unitfrom the family unit Showing signs of denial Showing signs of denial

or disinterest or disinterest Becoming obsessed Becoming obsessed

with the patient’s thingswith the patient’s things

Common Concerns HeardCommon Concerns Heard

““My brother gets away with My brother gets away with EVERYTHING!”EVERYTHING!”

““We never get out”We never get out” ““People Stare at us”People Stare at us” ““It scares me when my brother hits It scares me when my brother hits

me.”me.” ““I can’t talk to my parents because they I can’t talk to my parents because they

are too stressed already.”are too stressed already.” ““I never get to do anything fun!!”I never get to do anything fun!!”

Unusual OpportunitiesUnusual Opportunities MaturityMaturity Social Social

CompetenceCompetence AdvocacyAdvocacy LoyaltyLoyalty

ToleranceTolerance PridePride Vocational Vocational

OpportunitieOpportunitiess

AppreciationAppreciation

Helping Siblings Cope with Helping Siblings Cope with Healthcare ExperiencesHealthcare Experiences

Information is the key Information is the key component in supporting component in supporting siblings and helping them cope siblings and helping them cope with a disability or healthcare with a disability or healthcare experienceexperience

Incomplete information may Incomplete information may create fantasies that are often create fantasies that are often worse than the real situationworse than the real situation

Helping Siblings Cope with Helping Siblings Cope with Healthcare ExperiencesHealthcare Experiences

Be honest Be honest Encourage them to ask questions and Encourage them to ask questions and

share feelingsshare feelings Allow siblings to participate in Allow siblings to participate in

healthcare experienceshealthcare experiences Take tour of clinics and specialty Take tour of clinics and specialty

schoolsschools Allow to attend or be a part of therapies Allow to attend or be a part of therapies

and interventionsand interventions

Helping Siblings Cope with Helping Siblings Cope with Healthcare ExperiencesHealthcare Experiences

Act out hospital Act out hospital experiences with experiences with people ,dolls, puppetspeople ,dolls, puppets

Read or color books with Read or color books with stories about hospitalsstories about hospitals

Allow children to create Allow children to create their own books and storiestheir own books and stories

Use active or vigorous play Use active or vigorous play for outletsfor outlets

Activities to promote Activities to promote copingcoping

Maintain as close to normal routine as Maintain as close to normal routine as possible possible

Maintain communication between sibling and Maintain communication between sibling and patient through pictures, written letters, tape- patient through pictures, written letters, tape- recording messages, phone conversations recording messages, phone conversations

If part exchange special items between If part exchange special items between healthy sibling and parents, as well as healthy healthy sibling and parents, as well as healthy sibling and patients sibling and patients

Create individual time and attention for Create individual time and attention for healthy childrenhealthy children

Communicate to healthy sibling of scheduled Communicate to healthy sibling of scheduled departures and returnsdepartures and returns

Attend siblings support groups and campsAttend siblings support groups and camps

Resource for siblings and Resource for siblings and familiesfamilies

Comprehensive Information and Referral System, Comprehensive Information and Referral System,

2-1-1 Orange County2-1-1 Orange County Formally known as “Info-link" Formally known as “Info-link" www.211oc.org

Family Resource Centers “FRCs”Family Resource Centers “FRCs” Resources Specific to ChildrenResources Specific to Children

Help Me Grow - 866-476-9025Help Me Grow - 866-476-9025 Children’s Home Society Children’s Home Society The Prevention Center/Children’s BureauThe Prevention Center/Children’s Bureau

In-home services 714-543-4333In-home services 714-543-4333

..

Children with Special NeedsChildren with Special Needs Regional Center 714-796-5100Regional Center 714-796-5100

4 OC KIDS 714-939-61184 OC KIDS 714-939-6118

Comfort Connection 714-558-5400Comfort Connection 714-558-5400

UCP (United Cerebral Palsy) 714-200-2600UCP (United Cerebral Palsy) 714-200-2600

FSN (Family Support Network) 714-854-7762FSN (Family Support Network) 714-854-7762

Fiesta Familiar (Spanish) 714-633-7532Fiesta Familiar (Spanish) 714-633-7532

Special EducationSpecial Education

TASK TASK

Team of Advocates for Special Kids Team of Advocates for Special Kids

714-533-8275714-533-8275

PSRS PSRS

Procedural Safeguards and Referral Procedural Safeguards and Referral ServicesServices

800-564-0445800-564-0445

Questions?Questions?