SUPPORTING SIBLINGS OF

STUDENTS WITH SPECIAL NEEDS

Jennifer Milia, NCSPMarch 2013

Presented to the Hingham SEPAC

TOPICS TO BE COVERED

The Sibling Experience Sibling Needs: Developmental

Perspectives Community Support: Information on the Sibshops ® Program; resources

SIBLING EXPERIENCE

Factors that impact sibling experienceType of disability Birth orderAttitude of parents/caregiversFamily culture

Why focus on siblings?People with disabilities living longer than

beforeLiving with parentsDecrease in state and federal

funding/programs

SIBLING EXPERIENCE

SIBLING EXPERIENCE What the research said (1960s-1980s)

Pessimistic viewAligned with national views & laws about

disabilities

What we know now(late 1980s-present)Optimistic viewAligned with national views & laws about

disabilities Information about social-emotional

development and practical life impacts

SIBLING EXPERIENCE

The Down Side The Up Side

Fear Over-identification Isolation Guilt Resentment Perceived pressure

to achieve Increased

responsibilities Parentification

Maturity Sense of self,

independence Wisdom and insight Tolerance Pride Vocational

opportunities Advocacy skills Social skills

SIBLING EXPERIENCE

“I’m more positive than my friends because I know how lucky I am. I look at my brother and how he struggles at almost everything he does—and then I look at how so much comes easy to me. I bet a lot of my friends would have a more positive outlook on life if they had a sib with a disability.”—NP

CHANGING NEEDS OF SIBLINGS Amount and type of information Emotional support Include in discussions Young siblings (school-age vs. teens) College-age Caregiving role?

SIBLING NEEDS: AS CHILDREN Acknowledge complex family needs,

feelings Address feelings of guilt & fear Do not define them, or allow them to

define themselves, solely as a sibling Provide supports within community (for

sibling and parents)

SIBLING NEEDS: AS CHILDREN Dividing Attention

Fair is not always equal, and equal is not always fair

Incorporating sibling into therapy experiences, peer role model

Set aside time for sibling

Emotional Roller Coaster Inconsistent responses and reactionsNeed to connect with sibling on an even

basis

SIBLING NEEDS: AS CHILDREN Peer Interactions

Explaining the disabilityThe sibling “test”AcceptanceDealing with the public

SIBLING NEEDS: ADOLESCENTS Having more of a voice

Long-term planning for siblingLong-term planning for self

Life choicesLocation of school or work, living

arrangementsChoice of study or careerFamily planning considerations

SIBLING NEEDS: ADOLESCENTS

“How did I spend my teens? Helping my mom and dad take care of my sister. Where did I go to college? As far away as possible.”—CR

“My sister will always be in my life. She will be included in the decisions I make and the paths I choose. I see her in every aspect of my future.”—ED

SIBLING NEEDS: AS ADULTS Taking on the Caregiving Role

Choices of arrangementsMaking different choices than parentsLevel of involvement & management from

siblingShift from community support (i.e contrived

groups) to natural social supports

Financial and Legal IssuesAdvocating for medical, housing,

employment benefits Incorporating sibling into long-term needs

SIBLING NEEDS: AS ADULTS

“When my mom dies, my brothers assume I will take over caring for our sister. I can’t say no, but how will I do that?”—HR

“My parents were very protective of my brother. As I took over caring for him, I did some things very differently. He and I got closer as his world expanded and blended into mine.”—ES

COMMUNITY SUPPORT & RESOURCES Massachusetts Sibling Support Network

www.masiblingsupport.org Sibling Leadership Network

www.siblingleadership.org

Listservs (SibKids, SibNet, SibParent)

Sibshops Arc of Greater Plymouth Sibshops

(www.thearcofgp.com)

Sibshops of Greater Brockton (www. brocktonareaarc.org)

COMMUNITY SUPPORT & RESOURCES The JF&CS Yesodot Family Support program in collaboration with the

Massachusetts Sibling Support Network presents:  Sibshops with Don Meyer 

Jewish Family & Children's Service (JF&CS), Waltham, MA

Thursday, April 4, 2013 at 9:00 AM - 3:00 PM

Friday, April 5, 2013 9:00 AM - 2:30 PM 

Register At:

http://jfcssibshops.eventbrite.com/ Presented by Don Meyer, Director, Sibling Support Project Sibshops reflect a belief that our communities need to acknowledge the difficulties

faced by brothers and sisters of children with special needs and provide them with the opportunity to connect with each other in the same way that many parents of children with special needs have benefitted from sharing their experiences.

Open to interested participants across New England including adult siblings, parents, grandparents, and family members of children/teens, professionals, organizational staff who wish to facilitate a Sibshop in their local community, and social workers who work with families that have siblings as part of the family.

COMMUNITY SUPPORT & RESOURCES Special Needs Planning Guide by John

Nadworny and Cynthia Haddad (2007) Sibling Slam Book by Don Meyer Oh Brother! Growing Up with a Special

Needs Sibling by Natalie Hale Autism and Me: Sibling Stories What About Me? Growing Up with a

Developmentally Disabled Sibling by Bryna Siegel