1. SAS GROUP Siblings Are Special Presented by Barbara Micucci & Avery Carter

2. Goals Review the current research Discuss the implementation and planning of the SAS group Discuss the importance of family involvement Discuss the system-wide impact of the group

3. I Good Fun Happy Like Watch Is Park Great To Go Have They Silly Beach Present Nice He / She TV Yes / No The Play With Mall Word List

4. Prevalence In the United States, there are approximately six million children with disabilities “80% of disabled children have non- disabled siblings” (Atkinson & Crawforth, 1995)

5. Difficulties for Siblings Lack of attention from other family members Limited opportunities for affective expression Isolation from peers in similar circumstances Inadequate information about the sibling’s disability

6. Common Concerns & Feelings Stressful home life Limits on family activities and outings Worrying about bringing friends home Concern regarding caregiving Being teased or bullied about their sibling Feeling guilty Being embarrassed Feeling angry or jealous Feeling pressure to excel

7. Variables that Affect the Sibling’s Adjustment Family resources Family lifestyle Parent’s child-rearing practices Kind and severity of the disability Age difference between siblings Any other stress-producing conditions that exist in the family Existing coping mechanisms and interaction patterns Kind and quality of the community support services Family culture The attitude of parents toward child

8. Positive Characteristics of Sibs Empathy Altruism Tolerance Understanding Maturity Pride regarding sibling’s accomplishments Sense of loyalty and caring towards sibling

9. What the Research Shows… “If children feel safe, supported and valued, are able to share information and feelings, and feel they can solve problems, make choices and have some control over their lives, they will develop greater self-esteem, strength and resilience.” (Strohm, 2004, as cited in Conway & Meyer, 2008)

10. What the Research Shows… School professionals should be sensitive to the needs of non-disabled siblings. School professionals should support the development of good self-esteem in these siblings, possibly through sibling support groups. School professionals should also support these students by supporting their families as a whole and referring them to family counseling if necessary when problem- solving communication and coping skills are low. (Sgandurra & Fish, 2001)

11. How the Research is Being Used… Sibshops: Workshops for Siblings with Special Needs –From the Sibling Support Project –Support on a national level –Goals of Sibshops: Allows siblings to meet other children with disabled siblings Provides a place to discuss common concerns Provides an opportunity for sibs to learn how to deal with difficult situations Provides a place for siblings to learn about their sibling’s disability Allows parents and guardians to learn about the difficulties surrounding having a sibling with a disability

12. If I could tell my friends just one thing that is bad about having a sib with special needs, it would be: “It’s bad because Angelo can’t play with me. We also get treated differently and I don’t think it’s fair.”

13. If I could tell my friends just one thing that is bad about having a sib with special needs, it would be: “Megan always gets attention.”

14. Types of Disabilities Autism Down Syndrome (Trisomy 21) Cerebral Palsy Legal Blindness Deafness Intellectual and Developmental Disability Lissencephaly (smooth brain)

15. Impact on the Families Not a lot of alone time with parents Therapists come to the house Hard time understanding their sibling Don’t have family mealtimes Sibling gets a lot of attention Sibling does things that bothers them – talks loud, pulls hair

16. Feelings Children Experience Sad Mad Frustrated Special Annoyed Different

17. Advice for Approaching a Child with a Disability Smile Say “Hi” Don’t be scared if they get angry – they may not speak and might behave wrong Treat them the same Ask them to play –Be nice and polite

18. Student Data - 2010 Eight out of the 9 students enjoyed coming each week a lot or a little Favorite activities: –Making the graffiti page –Sharing their books Least favorite part: –That the group was during lunch/recess time Half of the group said that it helped him/her understand their sibling better Eight out of 9 wanted to be a “buddy” to the VB class

19. Parent Data Parents reported that all of the students enjoyed coming to SAS Parents reported that 8 out of 9 students talked at least a little bit more at home Regarding their feelings about the book: –Loved spending time working on it with my child and hearing his point of view –Anger and frustration about sibling came out that the parent wasn’t aware of –Brought up facts that were never discussed before about the disability

20. Parent Data When asked if the book opened up new conversations: –Yes, it made us realize how much the disability affects our lives –Yes, it allowed us to talk about great things we do as a family and how special we are When asked whether the group was helpful for their child: –Yes, I felt it helped her to learn about other disabilities and realize how everyone is special and shouldn’t be bullied –The group normalized her feelings and she made a friend who understands –The group helped her to not feel so alone

21. Student Data - 2011 Five out of the 9 students returned, and one new student was added Comments about what they liked from last year: –Doing the announcements for Autism Awareness –Going to the VB class –Meeting other kids who have disabled siblings –Making the books Four out of 5 students wanted to help in the VB class again

22. The Slam Book My name is Lauren. I am 7 years old, and I live with my mom, my dad, my sister Kathryn, my dog Chipwich, and my fish. My favorite food is pizza. My favorite color is pink. My favorite place to go is Tennessee. I love playing on the playground outside and riding my bike. When I’m inside I like to read, watch TV, and do art. I’m really good at reading. It makes me feel happy when I’m reading by myself.

23. The Slam Book My name is Amanda. I am 10 years old, and I live with my mom, my dad, and my two brothers. My favorite food is pizza. My favorite color is pink. My favorite place to go is Disney World. I love playing hide-and-seek outside, but when I’m inside I like to play UNO, and I’m really good at art, softball, and being cute. It makes me feel happy when I get my phone! My birthday is September 29 th. I can be very fun and awesome, and I love chocolate!

25. An Adult Perspective She had a very positive experience with my sister growing up. “It was like having a little sister who never grew up. She was just always 6.”

26. Any thoughts?

27. Directions to Access My Website Type in www.umasd.orgwww.umasd.org Click on the word “Staff” in gold Click on letter M Find Micucci, Barbara and click on it On left side of counselor page look for title “2011 PSCA Workshop – SAS Group”

28. Contact Info Barb Micucci, School Counselor Caley Elementary Upper Merion Area School District 610-205-3689 bmicucci@umasd.org www.umasd.org

29. References Barak-Levy, Y., Goldstein, E., & Weinstock, M. (2010). Adjustment characteristics of healthy siblings of children with autism. Journal of Family Studies, 16, 155-164. Conway, S., & Meyer, D. (2008). Developing support for siblings of young people with disabilities. Support for Learning, 23, 113-117. Hartwell-Walker, M. (2006). What About Me? — Support for the Siblings of Disabled Children. Psych Central. Retrieved on November 8, 2011, from http://psychcentral.com/lib/2006/what-about-me-support-for-thesiblings-of-disabled- children/ Kaiser Permanente – Department of Genetics. (2008). Sibling of your special needs child. Retrieved from http://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/resources/handouts.jsp Macks, R.J., & Reeve, R.E. (2007). The adjustment of non-disabled siblings of children with autism. Journal of Autism & Developmental Disorders, 37, 1060-1067. McCullough, K., & Simon, S.R. (2011). Feeling heard: A support group for siblings of children with developmental disabilities. Social Work with Groups, 34, 320-329. National Information Center for Children and Youth with Disabilities. (1994). Children with disabilities: Understanding sibling issues. Retrieved from http://www.athealth.com/Consumer/disorders/disabsibling.html Naylor, A., & Prescott, P. (2004). Invisible children? The need for support groups for siblings of disabled children. British Journal of Special Education, 31, 199-206. Sgandurra, C.A., & Fish, M.C. (2001). The social-emotional development of siblings of children with disabilities. Retrieved from http://www.eric.ed.gov/PDFS/ED457467.pdf

30. Books Gainer, C. (1998). I’m like you, you’re like me: A child’s book about understanding and celebrating each other. Minneapolis, MN: Free Spirit Publishing. Meyer, D. (Eds.). (2005). The sibling slam book: What it’s really like to have a brother or sister with special needs. Bethesda, MD: Woodbine House, Inc. Morvay, B.J. (2009). My brother is different. Ashland, OH: BookMasters, Inc. Notbohm, E. (2005). Ten things every child with autism wishes you knew. Retrieved from http://www.ellennotbohm.com/article-archive/ten-things-every-child-with-autism-wishes- you-knew/ Resh, K. (Eds.). (2006). Our friend Mikayla. Raleigh, NC: The Bubel/Aiken Foundation. Seskin, S., & Shamblin, A. (2002). Don’t laugh at me. Berkely, CA: Tricycle Press. Stefanski, D. (2011). How to talk to an autistic child. Minneapolis, MN: Free Spirit Publishing.