Stronger Together A Comprehensive Resource Guide for Illinois

This free guide has been developed especially for you by Supporting & (S.I.B.S.) Network, Illinois, USA

Visit us at SibsNetwork.org to get the latest on upcoming events, news, blog posts, and more. Being a to someone with special needs can be, in the immortal words of Charles Dickens, “the best of times and the worst of times.”

It's the best because, well, your sibling is the best. And it's the worst because loving your sib means facing really, really challenging questions every. Single. Day.

Questions like: How can I accept my as he is, even as I hope he can grow and change? How can I best include my in my life? What's the deal with Medicaid and Social Security? Should I talk to our about special needs trusts? And what about wills? Dear God, do they even HAVE wills? What if something were to happen tomorrow ... ?

These questions (and more) arise, and you'd rather not figure out the answers alone.

Your sib needs support, and your big secret is that you do, too. Quite simply, you long for someone to help, someone who understands what it's like.

That's why we've created this resource guide for you. We're siblings too, and we think no sibling should have to go it alone … especially not when there's a wealth of help, information, and support just waiting to be accessed.

In fact, we believe that getting connected can make all the difference.

Connecting to a key resource can help you make well-informed decisions and advocate for your brother or sister.

Connecting with a fellow sibling can help you feel a sense of solidarity, and allow you to forge a lasting friendship.

Supporting Illinois Brothers & Sisters (SIBS) champions siblings of people with disabilities in Illinois, offering compassionate solidarity and relevant resources in order to enhance the quality of life for siblings and alike. In other words: we're with you. Let's look to the future together.

~ The S.I.B.S. Leadership Team Connect with Fellow Adult Siblings Connect Online (Selected Groups):

Sibs Network Facebook Group – Welcoming all Illinois siblings and members to connect and share via Facebook! Since this is a closed group, simply click “Join Group” on the top right corner of the page. Our group admin will then review and approve your request.

AdultSibsNet – A listserv/Yahoo Group for adult sibs in Illinois. Note that you don't need a Yahoo account to join; just send an email to [email protected] to participate.

SibNet Listserv (via The Sibling Support Project ) – The Internet's first and largest group for adult siblings of people with special needs. SibNet also has a SibNet Facebook group.

Midwest Sibling Support Networks by State:

Illinois S.I.B.S.: Supporting Illinois Brothers & Sisters (that's us!) Michigan Sibs (MISIBS): Supporting & Including Brothers & Sisters Ohio SIBS – Special Initiatives by Brothers and Sisters Fox Valley Sibling Support Network (WI) – Fostering a community of support and understanding for siblings of those with special needs. Tennessee Adult Brothers & Sisters (TABS) – A support and networking group for adult siblings of individuals with disabilities. Click your state to browse local Sibshops and groups (via The Sibling Support Project): Illinois Indiana Iowa Kentucky Michigan Missouri Ohio Tennessee Wisconsin Attend a Sibling Conference

Midwest Regional Adult Sibling Conferences & Events Fox Valley Sibling Support Network – Visit the What We Offer page to view upcoming events, workshops, and more. Also features Sibshops and offerings for young siblings. Based in Appleton, WI. Ohio SIBS – Offers an annual state conference in the Columbus, OH area. Michigan Sibs (MISIBS): First state conference held in 2013; for updates on future events, visit the What's New page. (MISIBS is based in Westland, MI.) Tennessee Adult Brothers & Sisters (TABS) – Offers an annual conference in the Nashville, TN area.

National Adult Sibling Conferences Sibling Leadership Network National Conference – hosted in partnership with AAIDD (American Association on Intellectual and Developmental Disabilities), the Sibling Leadership Network (SLN) hosts a national conference. Attendees learn about resources, share stories, network and gain insight on sibling experiences.

The Arc of the – For people with intellectual and developmental disabilities; visit the Arc's Events page to view upcoming conferences.

Celebrate National Siblings Day

Held annually on 10; mark your calendar! National Siblings Day, Sibling Support Project – honoring the relationships of siblings Siblings Day, Wikipedia entry

Visit the Illinois Department of Human Services (DHS) website to learn more about services, eligibility, and more. Visit the Illinois Council on Developmental Disabilities website Browse the AutismAfter16.com Illinois Services Roadmap, a yearly guide to planning and supports.

Take Charge of Future Planning

• Center for Independent Futures : Helping adults with disabilities and their families plan, support and sustain new ways of living in their community (Evanston, IL) • Protected Tomorrows : An advocacy firm that enhances the lives of people with special needs through a comprehensive life planning process (Lincolnshire, IL) • Brian Rubin : A professional law corporation limited to Special Needs Legal and Future Planning for Illinois families (Buffalo Grove, IL) • Alexandra Baig : Wealth manager and strategic planner for people with and without disabilities (Greater Chicago area) • Family Benefits Solutions : Dedicated to the protection and well-being of families with special needs (Buffalo Grove, IL) • Life’s Plan : Managing a pooled special needs trust (Lisle, IL)

Selected Online Special Needs Planning Resources: • Wrightslaw's Planning For The Future • Book Review: Planning for the Future • Life Book By Clearbook (download-ready Word document) • University Of Illinois Letter Of Intent (download-ready Word document) • Families and Adults with Developmental Disabilities in Illinois Resource Guide (download- ready PDF) • The Arc Future Planning Handbook (download-ready PDF)

Browse Sibling Organization Websites • The Sibling Leadership Network (based in the US) • The Sibling Support Project (based in the US) • The Arc of the US, National Sibling Council • The Sibling Connection (based in St Louis, MO) • AHRC Supporting Siblings (based in New York, NY) • Sibs: For Brothers & Sisters of people with Special Needs (based in the UK) • SuperSibs: Serving Siblings of Children with Cancer (based in Palatine, IL) • Siblinks Cancer Support (based in the UK) • Siblings Australia

Explore Illinois-Based Sibling Support Resources • The Arc of Illinois • IPADDunite (Illinois Parents of Adults with Developmental Disabilities, Unite!) health.groups.yahoo.com/group/IPADDUnite • National Organization to End the Wait Lists www.ourwebs.info/indexnoe.htm • The Special Needs Alliance : A national, not for profit organization of attorneys dedicated to the practice of disability and public benefits law. • Life My Way : Community, Action, and Life in Illinois • Institute on Disability and Human Development , University of Illinois

Nearby sites of interest: • The Nisonger Center : A University Center for Excellence in Developmental Disabilities, The Ohio State University • The Waisman Center : Dedicated to the advancement of knowledge about human development, developmental disabilities, and neurodegenerative diseases, University of Wisconsin-Madison

Read Recommended Articles Online • Tara Conley's (SIBS co-founder) thesis on the effects of sibling groups on siblings without disabilities • The Sibling Leadership Network, Sibling Blogs • AtHealth: Children with Disabilities: Understanding Sibling Issues • The New York Times: Her autistic brothers, 2007 feature • The New York Times: Siblings of the disabled have their own troubles, 2007 feature • NAMI: Tips for Sibs of Persons with M ental Illness • Strength for Caring: Reflections from Adult Siblings with ASD • Autism After 16: Multiplicity: Life with Two Autistic Siblings • Autism After 16: 7 Signs You Might Be a Supersibling • Autism After 16: Sharing Experiences • Autism After 16: I Carry Your Heart • A Wish Come Clear: My Brother: A Documentary Film • A Wish Come Clear: All Too Familiar: A Story for National Siblings Day • Sun Sentinel: Sibshops 2005 feature article • Sun Sentinel: The invisible ones , 2005 feature article • NBC Chicago: My Brothers Keeper , 2009 feature • Chicago : Many siblings are simply expected to take over parents' role one day , 2009 feature • SIBS Network: Siblings & Future Planning (PDF download) • SIBS Network: Supporting Positive Sibling Relationships (PDF download) • SIBS Network: Sibshops Article (PDF download) • SIBS Network: Inspiring Each Other (PDF download) • SIBS Network: Impact Of Disability On The Family (PDF download) • Education.com: Special Needs Siblings Have Special Needs Too! • FriendshipCircle.org: 10 Ways to Give Attention to a Sibling of a with Special Needs • FriendshipCircle.org: Weekly Calls and Wild Pizza: Helping Siblings Forge Connections • AboutOurKids.com: Siblings of children with special needs • University of Michigan: Siblings of kids with special needs • NPR: Siblings with special needs change childhood (2012 story) • Chicago Tribune: Special Needs for Special Siblings (2013 story) • US News: Money: Caring for a Sibling with Special Needs (2013 story) • Parenting Aspergers: Sibling Challenges (2013 interview) • Say Hello, Yellow!: Coping with Sibling-Related Stress • Chicago Reader: Sibling Speaks On The R Word (2010 feature) • 20/20 Report: Relationship between a 13 year old and his 16 year old sister (2008) • Disability Beat, 9.2.09 : Tara Kosieniak and Katie Keiling Arnold share their perspectives as sisters to siblings with disabilities. Mp3 direct link

Browse Sibling-Related Books And Movies

Read Books for Parents and Adult Siblings

Explore an extensive list from The Sibling Support Project Amazon Store

Sibshops: Workshops for Siblings of Children with Special Needs by Donald J. Meyer and Patricia F. Vadasy Brothers, Sisters, and Special Needs: Information and Activities for Helping Young Siblings of Children with Chronic Illnesses and Developmental Disabilities by Debra J. Lobato Brothers & Sisters: A Special Part of Exceptional Families by Thomas H. Powel and Peggy Gallagher I Was a Stranger to Beauty by Caroline McGraw (Kindle Single) It Isn’t Fair! Siblings of Children with Disabilities by SD Klein and MJ Schleifer What About Me? When Brothers and Sisters Get Sick by A. Peterkin Finding a Way: Living with Exceptional Brothers and Sisters by M.B. Rosenberg The Effects of Mental Retardation, Disability, and Illness of Sibling Relationships: Research Issues and Challenges by Z. Stoneman & P.W. Berman What About Me? Growing Up with a Developmentally Disabled Sibling by Bryna Siegel My Sister’s Keeper: Learning to Cope with a Sibling’s Mental Illness by Margaret Moorman Siblings of Children with Autism: A Guide for Families by Sandra L. Harris Oh, Brother! Growing up with a Special Needs Sibling by Natalie Hale Read Stories for Young Sibs We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen Are You Alone on Purpose? by Nancy Werlin Tru Confessions by Janet Tashjian Way to Go, Alex by Robin Pulver My Brother, Matthew by Mary Thompson Our Brother Has Down Syndrome by Shelley Cairo The Summer of the Swans by Betsy Byars I Have a Sister-My Sister is Deaf by Jeanne Whitehouse Peterson Coping when a Brother or Sister is Autistic, by Marsha Sarah Rosenberg Everything You Need to Know When a Brother or Sister is Autistic by Marsha Sarah Rosenberg Princess Pooh by Kathleen M. Muldoon Welcome Home, Jellybean by Marlene Fanta Shyer Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer Living With a Brother or Sister with Special Needs: A Book for Sibs by Donald Meyer and Patricia Vadasy I’m the Big Sister Now by M. Emmett Ben, King of the River by David Gifaldi Sara’s Secret by Suzanne Wanous My Sister Annie by Bill Dodds A Real this Year by Karen Williams My Brother Sammy by Becky Edwards What’s Wrong with Timmy? by Maria Shriver Autism through a Sister’s Eyes by Eve B. Band My Brother Kevin Has Autism by Richard Carlson Everybody Is Different: A Book for Young People who have Brothers or Sisters with Autism by Fiona Bleach My Friend with Autism: A coloring book for peers and siblings by Beverly Bishop Big Brother Dustin by Alden Carter Are you Alone on Purpose? By N. Werlin Another Look at the Rainbow – about being a sibling of a child with cancer. Andy and His Yellow Frisbee by Mary Thompson – Autism Autism Through a Sister’s Eyes by Eve Band and Emily Hecht- nonfiction for younger readers Read Sibling Stories Written By Siblings Riding the Bus with My Sister: A True Life Journey by Rachel Simon Siblings: Brothers and Sisters of Children with Special Needs by Kate Strohm The Ride Together: A Brother and Sister’s Memoir of Autism in the Family by Judy Karasik and Paul Karasik Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive and Love's Subversive Stance: Ground Yourself and Grow in Relationship, both by Caroline McGraw (digital books; free at A Wish Come Clear) I Was a Stranger to Beauty by Caroline McGraw (Kindle Single) Special Siblings: Growing Up with Someone with a Disability by Mary McHugh My Sister’s Keeper by Margaret Moorman

Read Fiction About Adult Sibling Issues I Know This Much Is True by Wally Lamb

Watch Films Featuring Sibling Issues Tru Confessions What’s Eating Gilbert Grape? Benny and Joon Dominick and Eugene Without Apology, a documentary film by Susan Hamovitch My Brother, a documentary film by Edwin Mah

Research Articles Bigby, C. (1997). Parental substitutes? The role of siblings in the lives of older people with intellectual disability. Journal of Gerontological Social Work, 29, 3-21. Bigby, C. (1996). Transferring responsibility: The nature of effectiveness of parental planning for the future of adults with intellectual disability who remain at home until mid-life. Journal of Intellectual & Developmental Disability, 21, 295. Braddock, D., Emerson, E., Felce, D., Stancliffe, R. (2001) Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia. Mental Retardation and Developmental Disabilities Research Reviews, 7, 115-121. Burton, S.L., & Parks, A.L. (1994.) Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities. Social Work Research, 18, 178-185. Carr, J. (2004). Families of 30-35-year olds with Down syndrome. Journal of Applied Research in Intellectual Disabilities, 18, 75-84. Cicirelli, V. G. (1995). Sibling relationships across the life span. New York : Plenum Press. Flaton, R.A. (2006). “Who would I be without Danny?” Phenomenological case study of an adult sibling. Mental Retardation, 44, 135-144. Freedman, R., Krauss, M., & Seltzer, M. (1997). Aging parents’ residential plans for adults with mental retardation. Mental Retardation, 35, 114-123. Goetting, A. (1986). The developmental tasks of siblingship over the life cycle. Journal of and the Family, 48, 703-714. Greenberg, J.S., Seltzer, M.M., Orsmond, G.I., & Krauss, M.W. (1999). Siblings of adults with mental illness or mental retardation: Current involvement and expectation of future caregiving. Psychiatric Services, 5, 1214-1219. Griffiths, D.L., & Unger, D.G. (1994). Views about planning for the future among parents and siblings of adults with mental retardation. Family Relations, 43, 221-227. Heller, T., & Factor, A. (1993). Aging family caregivers: Support resources and changes in burden and placement desire. American Journal on Mental Retardation, 98, 417-426. Heller, T. & Kramer, J. (2009). Involvement of adult siblings of people with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47, 208-219. Hodapp, R.M., & Urbano, R.C. (2007). Adult siblings of individuals with Down syndrome versus with autism: Findings from a large-scale US survey. Journal of Intellectual Disability Research, 51, 1018- 1029. Krauss, M.W., Seltzer, M.M., Gordon, R., & Friedman, D.H.(1996). Binding ties: The roles of adult siblings of persons with mental retardation. Mental Retardation, 34, 83-93. Marks, S.U., Matson, A., & Barraza, L. (2005). The impact of siblings with disabilities on their brothers and sisters pursuing a career in special education. Research & Practice for Persons with Severe Disabilities, 3, 204-218. McGraw, L.A. & Walker, A.J. (2007). Meanings of sisterhood and developmental disability: Narratives from white nondisabled sisters. Journal of Family Issues, 28, 474-500. Orsmond, G., Lin, L., & Seltzer, M. (2007). of adolescents and adults with autism: The contribution of disability in siblings to maternal well-being and family adjustment. Intellectual and Developmental Disabilities, 45, 257-270. Orsmond, G., & Seltzer, M. (2000). Brothers and sisters with mental retardation: Gendered nature of the . American Journal of Mental Retardation, 105, 486-508. Orsmond, G., & Seltzer, M. (2007). Siblings of individuals with autism or Down syndrome: Effects on adult lives. Journal of Intellectual Disability Research, 51, 682-696. Piven, J., Gayle, J., Chas, G., Fink, B., Landa, R., Wzorek, M., & Folstein, S. (1990), A family history study of neuropsychiatric disorders in the adult siblings of autistic individuals. Journal of the American Academy of Child and Adolescent Psychiatry, 29, 177–183. Powell, T.H. & Ogle, P.A. (1993). Brothers and sisters—A special part of exceptional families. Baltimore : Paul H. Brookes Publishing. Pruchno, R.A., Patrick, J.H., & Burant, C.J. (1996). Aging women and their children with chronic disabilities: Perceptions of sibling involvement and effects on well-being. Family Relations, 45, 318- 326. Rimmerman, A. (2001). Involvement with and Role Perception Toward an Adult Sibling With and Without Mental Retardation. Journal of Rehabilitation, 6(2), 10-15. Rodger, S., & Tooth, L. (2004). Adult siblings’ perceptions of family l ife and loss: A pilot case study. Journal of Developmental and Physical Disabilities, 16(1), 53-71. Rossiter, L., & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies, 10, 65-84. Seltzer, G.B., Begun, A., Seltzer, M.M., & Krauss, M.W. (1991). Adults with mental retardation and their aging mothers: Impacts of siblings. Family Relations, 40, 310-317. Seltzer, M.M., Greenberg, J.S., Krauss, M.W., Gordon, R.M., & Judge, K. (1997). Siblings of adults with mental retardation or mental illness: Effects on lifestyle and psychological well-being. Family Relations, 46, 395-405. Seltzer, M.M., Krauss, M.W., Hong, J., & Orsmond, G.I. (2001). Continuity or discontinuity of family involvement following residential transitions of adults who have mental retardation. Mental Retardation, 39, 181-194. Stoneman, Z. (2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339-350. White, L. (2001). Sibling relationships over the life course: A panel analysis. Journal of Marriage and Family, 63, 555-568. Wilson, C.J., McGillivray, J.A., Zetlin, A.G. (1992). The relationship between attitude to disabled siblings and ratings of behavioral competency. Journal of Intellectual Disability Research, 36, 325-336. Yirmiya, N., Shaked, M., & Erel, O. (2001). Comparison of siblings of individuals with autism and siblings of individuals with other diagnoses: An empirical summary. In E. Schopler, N. Yirmiya , C. Shulman, and L.M. Marcus (Eds). The research basis for autism intervention (pp. 59-73). New York : Kluwer Academic/Plenum Publishers. Zetlin, A.G. (1986). Mentally retarded adults and their siblings. American Journal of Mental Deficiency, 91, 217-225. This free guide has been developed especially for you by S.I.B.S.

Next Steps:

1. If you've enjoyed and benefited from it, we invite you to tell your friends! Refer them to our website, SibsNetwork.org, so that they can receive free digital copies.

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Make your secure donation today via the Paypal button on our Donate page, or mail a check to: SIBS, 3800 N Lake Shore Drive #3E, Chicago, IL 60613. Thank you for your generous support!