The Effects Of Autism on Siblings; How You Can Support Their Current and Future Needs By: Nicole Hadley, CCLS Child Life Specialist II And EDAC Outreach Programs Coordinator

Agenda Introduction to Child Life Introduction to Child Life Sibling’s reactions to diagnosis or healthcare experience Sibling’s reactions to diagnosis or healthcare experience Unusual opportunities Unusual opportunities Helping siblings and families cope Helping siblings and families cope

Child Life Specialist Child Life Specialist at UC Irvine Medical Center are professionally certified (CCLS) and have Bachelor’s or Master’s degree in child life, child development, or a related field Child Life Specialist at UC Irvine Medical Center are professionally certified (CCLS) and have Bachelor’s or Master’s degree in child life, child development, or a related field Child Life specialist have extensive training in techniques that help children and families cope and gain a better understanding of the healthcare experiences or life-changing diagnosis Child Life specialist have extensive training in techniques that help children and families cope and gain a better understanding of the healthcare experiences or life-changing diagnosis

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

Factors that influence a sibling’s reaction to disability or healthcare experience Age and developmental level. Age and developmental level. Seriousness of the need/where on the spectrum Seriousness of the need/where on the spectrum Amount of time separated from parents Amount of time separated from parents The amount of attention given to needs The amount of attention given to needs The quality of explanations and answers the healthy children receive to questions The quality of explanations and answers the healthy children receive to questions

Common Feelings of Siblings Abandonment Abandonment Displacement Displacement Fear Fear Loneliness Loneliness Anger Anger Guilt Guilt Over Identification Over Identification Loss/Grief Pressure to Succeed Increase Responsibility Confusion Embarrassment

Common Expressions of concerns and feelings More clinging or dependency on parents More clinging or dependency on parents Eating changes Eating changes Withdrawing Withdrawing Acting out or misbehaving Acting out or misbehaving Showing outburst of stored feelings Showing outburst of stored feelings Regression Regression Sibling Rivalry Sibling Rivalry Display feelings of jealously and competition Declining school performance Socially withdrawn Becoming withdrawn from the family unit Showing signs of denial or disinterest Becoming obsessed with the patient’s things

Common Concerns Heard “My brother gets away with EVERYTHING!” “My brother gets away with EVERYTHING!” “We never get out” “We never get out” “People Stare at us” “People Stare at us” “It scares me when my brother hits me.” “It scares me when my brother hits me.” “I can’t talk to my parents because they are too stressed already.” “I can’t talk to my parents because they are too stressed already.” “I never get to do anything fun!!” “I never get to do anything fun!!”

Unusual Opportunities Maturity Maturity Social Competence Social Competence Advocacy Advocacy Loyalty Loyalty Tolerance Pride Vocational Opportunities Appreciation

Helping Siblings Cope with Healthcare Experiences Information is the key component in supporting siblings and helping them cope with a disability or healthcare experience Information is the key component in supporting siblings and helping them cope with a disability or healthcare experience Incomplete information may create fantasies that are often worse than the real situation Incomplete information may create fantasies that are often worse than the real situation

Helping Siblings Cope with Healthcare Experiences Be honest Be honest Encourage them to ask questions and share feelings Encourage them to ask questions and share feelings Allow siblings to participate in healthcare experiences Allow siblings to participate in healthcare experiences Take tour of clinics and specialty schools Take tour of clinics and specialty schools Allow to attend or be a part of therapies and interventions Allow to attend or be a part of therapies and interventions

Helping Siblings Cope with Healthcare Experiences Act out hospital experiences with people,dolls, puppets Act out hospital experiences with people,dolls, puppets Read or color books with stories about hospitals Read or color books with stories about hospitals Allow children to create their own books and stories Allow children to create their own books and stories Use active or vigorous play for outlets Use active or vigorous play for outlets

Activities to promote coping Maintain as close to normal routine as possible Maintain as close to normal routine as possible Maintain communication between sibling and patient through pictures, written letters, tape- recording messages, phone conversations Maintain communication between sibling and patient through pictures, written letters, tape- recording messages, phone conversations If part exchange special items between healthy sibling and parents, as well as healthy sibling and patients If part exchange special items between healthy sibling and parents, as well as healthy sibling and patients Create individual time and attention for healthy children Create individual time and attention for healthy children Communicate to healthy sibling of scheduled departures and returns Communicate to healthy sibling of scheduled departures and returns Attend siblings support groups and camps Attend siblings support groups and camps

Resource for siblings and families Comprehensive Information and Referral System, Orange County Comprehensive Information and Referral System, Orange County Formally known as “Info-link" Formally known as “Info-link" Family Resource Centers “FRCs” Family Resource Centers “FRCs” Resources Specific to Children Resources Specific to Children Help Me Grow Help Me Grow Children’s Home Society Children’s Home Society The Prevention Center/Children’s Bureau The Prevention Center/Children’s Bureau In-home services In-home services

Children with Special Needs Regional Center Regional Center OC KIDS OC KIDS Comfort Connection Comfort Connection UCP (United Cerebral Palsy) UCP (United Cerebral Palsy) FSN (Family Support Network) FSN (Family Support Network) Fiesta Familiar (Spanish) Fiesta Familiar (Spanish)

Special Education TASK TASK Team of Advocates for Special Kids PSRS PSRS Procedural Safeguards and Referral Services

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