Supporting Siblings of Students with Special Needs

1. Supporting Siblings of Students with Special Needs Jennifer Milia, NCSP March 2013 Presented to the Hingham SEPAC

2. Topics to be Covered • The Sibling Experience • Sibling Needs: Developmental Perspectives • Community Support: Information on the Sibshops ® Program; resources

3. Sibling experience • Factors that impact sibling experience • Type of disability • Birth order • Attitude of parents/caregivers • Family culture • Why focus on siblings? • People with disabilities living longer than before • Living with parents • Decrease in state and federal funding/programs

4. Sibling experience

5. Sibling experience • What the research said (1960s-1980s) • Pessimistic view • Aligned with national views & laws about disabilities • What we know now(late 1980s-present) • Optimistic view • Aligned with national views & laws about disabilities • Information about social-emotional development and practical life impacts

6. Sibling experience • 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 The Down Side The Up Side

7. 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

8. Changing Needs of Siblings • Amount and type of information • Emotional support • Include in discussions • Young siblings (school-age vs. teens) • College-age • Caregiving role?

9. 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)

10. 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 reactions • Need to connect with sibling on an even basis

11. Sibling needs: as children • Peer Interactions • Explaining the disability • The sibling “test” • Acceptance • Dealing with the public

12. Sibling needs: adolescents • Having more of a voice • Long-term planning for sibling • Long-term planning for self • Life choices • Location of school or work, living arrangements • Choice of study or career • Family planning considerations

13. 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

14. Sibling needs: as adults • Taking on the Caregiving Role • Choices of arrangements • Making different choices than parents • Level of involvement & management from sibling • Shift from community support (i.e contrived groups) to natural social supports • Financial and Legal Issues • Advocating for medical, housing, employment benefits • Incorporating sibling into long-term needs

15. 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

16. 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)

17. 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, MAThursday, April 4, 2013 at 9:00 AM - 3:00 PMFriday, April 5, 2013 9:00 AM - 2:30 PM Register At:http://jfcssibshops.eventbrite.com/ Presented by Don Meyer, Director, Sibling Support Project Sibshopsreflect 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.

18. 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