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Resource Compilation

This is a compilation of resources shared at Sibshop Facilitator Trainings and other events hosted by the Sibling Support Project. Thanks to all who have contributed!  These resources can be sorted by resource type, audience and subject.

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Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters, Specific Disabilities

Troubled Journey: Coming to Terms with the Mental Illness of a Sibling or Parent

Author | Organizer | Group(s): Diane T. Marsh
Explores various illnesses, such as manic depression and schizophrenia, and discusses how these illnesses affect other family members, while giving helpful tools and advice for those involved to overcome problems in the homes where such illnesses exist.
Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters

That Went Well: Adventures in Caring for My Sister

Author | Organizer | Group(s): Terrell Harris Dougan
Meet Terrell Dougan's sister, Irene: a woman in her sixties who still believes in Santa Claus and the Easter Bunny--but who also enjoys playing those characters for the children at the local hospital; whose favorite outfit, which she'll sneak into whenever Terrell's back is turned, consists of Mickey Mouse kneesocks and shorts; who wins over the neighborhood kids by hosting two fire trucks at her lemonade stand; whose fridge bears a magnet: NORMAL PEOPLE WORRY ME.
Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters, Entertainment / Good Reads, Grieving

Small World: A Funny and Heartfelt Novel of Divorced Sisters, Family Secrets, and Hope

Author | Organizer | Group(s): Laura Zigman

“[A] brave and heartfelt book of truths.”—New York Times Book Review (A Group Text Pick and Editors' Choice)

From bestselling author Laura Zigman comes a heartfelt novel about two offbeat and newly divorced sisters who move in together as adults—and finally reckon with their childhood

A year after her divorce, Joyce is settling into being single again. She likes her job archiving family photos and videos, and she’s developed a secret comforting hobby: trolling the neighborhood social networking site, Small World, for posts that help solve life’s easiest problems. When her older sister, Lydia, also divorced, calls to tell her she’s moving back east from Los Angeles after almost thirty years away, Joyce invites Lydia to move into her Cambridge apartment. Temporarily. Just until she finds a place of her own.

Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters

Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs

Author | Organizer | Group(s): Kate Strohm

When there's a disabled child in the family, how are normally developing siblings affected? According to Kate Strohm, a counselor and health educator, siblings of the disabled face particular emotional challenges that are often overlooked. Able siblings commonly struggle with feelings of isolation, grief, anger, and anxiety—and these and other emotional issues can have lifelong effects.

Being the Other One is based on the author's own experience (as a sibling of a sister with cerebral palsy) and on extensive interviews she conducted with siblings of all ages. In clear and compassionate terms, Strohm explores the often secret feelings of siblings and offers valuable strategies for coping with the challenges they face.

Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters, Specific Disabilities

How to Be a Sister: A Love Story with a Twist of Autism

Author | Organizer | Group(s): Eileen Garvin

The first book by acclaimed author Eileen Garvin―her deeply felt, impeccably written memoir, How to Be a Sister will speak to siblings, parents, friends, and teachers of people with autism―and to anyone who sometimes struggles to connect with someone difficult or different.

Eileen Garvin’s older sister, Margaret, was diagnosed with severe autism at age three. Growing up alongside Margaret wasn’t easy: Eileen often found herself in situations that were simultaneously awkward, hilarious, and heartbreaking. For example, losing a blue plastic hairbrush could leave Margaret inconsolable for hours, and a quiet Sunday Mass might provoke an outburst of laughter, swearing, or dancing.

Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters

The Ride Together: A Brother and Sister’s Memoir of Autism in the Family

Author | Organizer | Group(s): Paul Karasik

We looked like a cup of human fruit cocktail dumped onto the top of the house, each piece different but all out of the same can.

So begins a book unlike any other, half comics and half text, about a family that lives with autism -- and the strange life that is ordinary to them.
The oldest son, David, recites Superman episodes as he walks around the living room. A late-night family poker game spirals into a fog-driven duel. A thug from an old black-and-white rerun crawls out of the television. A housekeeper transforms into an avenging angel. A broken plate signals a terrible change in the family that none of them can prevent...until it's too late.

This groundbreaking work was excerpted in The New York Times for its ability to honestly, eloquently, and respectfully set forth what life is like with autism in the family. What sets The Ride Together apart is its combination of imagination and realism -- its vision of a family's inner world -- with David at the center.

Type: Book
Audience: Adult
Subject(s): Siblings of Special Needs Brothers or Sisters, Accepting Differences

Special Siblings: Growing Up with Someone with a Disability

Author | Organizer | Group(s): Mary McHugh (Author), Stanley Klein Ph.D. (Foreword)
In this absorbing and candid book, Mary McHugh reveals what she experienced as the sister of a man with cerebral palsy and mental retardation—and shares what others have learned about being and having a “special sibling.” Weaving a lifetime of memories and reflections with relevant research and interviews with more than 100 other siblings and experts, McHugh explores a spectrum of feelings—from anger and guilt to love and pride—and helps readers understand the issues siblings may encounter
Type: Book
Audience: Juvenile / Elementary ( 6 - 12yrs)
Subject(s): Siblings of Special Needs Brothers or Sisters, Entertainment / Good Reads, Specific Disabilities

Wonder

Author | Organizer | Group(s): R. J. Palacio

NAMED ONE OF THE BEST CHILDREN’S BOOKS EVER BY TIME AND PARADE • E. B. WHITE READ ALOUD AWARD WINNER

I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.

August Pullman was born with a facial difference that prevented him from going to a mainstream school—until now. Starting fifth grade at Beecher Prep, Auggie wants nothing more than to be treated like everybody else—but his new classmates can’t get past the way he looks.

Beginning from Auggie’s point of view and expanding to include his classmates, his sister, her boyfriend, and others, the perspectives converge to form a portrait of one community’s struggle to live up to its values.

R. J. Palacio has called her debut novel “a meditation on kindness”—indeed, every reader will come away with a greater appreciation for the simple courage of friendship. Auggie is a hero to remember who proves that you can’t blend in when you were born to stand out.

Type: Book
Audience: Juvenile / Elementary ( 6 - 12yrs)
Subject(s): Siblings of Special Needs Brothers or Sisters, Specific Disabilities

Tru Confessions

Author | Organizer | Group(s): Janet Tashjian

Twelve-year-old Tru wants two things more than anything else in the world--to find a cure for her twin brother, Eddie, who is developmentally delayed, and to create her own television show. So the day Tru learns about a teen video competition on the local cable network, she knows that this is her change to make both of her dreams come true. But the more she gets involved in the making of her video documentary about Eddie, the more Tru begins to understand his special needs and the complexity of her relationship with him. Eddie seems like a burden from time to time, but he just may be the most important person in Tru's life.

Written in the form of a computer diary, this refreshingly humorous novel, narrated by a sassy heroine,s sensitively portrays the struggles and triumph of living with a sibling with special needs.

Type: Book
Audience: Juvenile / Elementary ( 6 - 12yrs)
Subject(s): Siblings of Special Needs Brothers or Sisters, Specific Disabilities

Rules (Scholastic Gold)

Author | Organizer | Group(s): Cynthia Lord

This Newbery Honor Book is a heartfelt and witty story about feeling different and finding acceptance -- beyond the rules.

Rules joins the Scholastic Gold line, which features award-winning and beloved novels. Includes exclusive bonus content!

Twelve-year-old Catherine just wants a normal life, which is near impossible when you have a brother with autism and a family that revolves around his disability. She's spent years trying to teach David the rules from "a peach is not a funny-looking apple" to "keep your pants on in public" -- in order to head off David's embarrassing behaviors.

But the summer Catherine meets Jason, a surprising, new sort-of friend, and Kristi, the next-door friend she's always wished for, it's her own shocking behavior that turns everything upside down and forces her to ask: What is normal?

The resources below are being added to the search database above and will be removed once added

 

Articles, Books and Films

The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities

Thicker Than Water: Essays by Adult Siblings of People with Disabilities

How to Talk So Kids Will Listen and Listen So Kids Will Talk

Demystifying Disability: What to Know, What to Say, and How to be an Ally by Emily Ladau

Edna’s Gift

New York Times Parenting article on siblings: https://nyti.ms/2SXvYiR

Spectrum News article on siblings: https://bit.ly/39CI6wL

Vanier Family Institute article: Strength in Diversity: Positive Impacts of Children with Disabilities https://vanierinstitute.ca/strength-in-diversity-positive-impacts-of-children-with-disabilities/

Poem: Welcome to Holland – often cited by parents of children with disabilities https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf

Wonder – a book and movie that includes a sibling story

Who Will Love Me by Kaleen Marshall – a book for caregivers. https://www.kaleenmarshall.com/who-will-love-me.

Riding the Bus with My Sister by Rachel Simon

My Dog Is As Smelly As Dirty Socks: And Other Funny Family Portraits – activity book to use with children https://www.amazon.com/Dog-Smelly-Dirty-Socks-Portraits/dp/0307930890

The Good Egg by Jory John https://www.amazon.com/gp/product/0062866001/ref=ox_sc_act_title_2?smid=ATVPDKIKX0DER&psc=1. Read aloud on YouTube: https://www.youtube.com/watch?v=eXwQQqHwajs.

For more children’s book recommendations visit http://sibsupport.wwwaz1-tr100.supercp.com/publications/, “Other Books for Young Readers” and “recommended reading list for young siblings.”

Future Planning Resources

The Arc’s Center for Future Planning, including free online tools for siblings and families to create a future plan: https://futureplanning.thearc.org/

Supported Decision Making Resources from the Sibling Leadership Network: https://siblingleadership.org/2017/08/23/helpful-resource-supported-decision-making/

Charting the Life Course free online tools for people with disabilities and families in multiple languages: https://www.lifecoursetools.com/

In Canada: http://www.partnersforplanning.ca/ (there is a cost for planning services)

Online Groups for Siblings

SibNet for adult siblings https://www.facebook.com/groups/SibNet

Sib20 for sibs in their 20s https://www.facebook.com/groups/118970768514797

SibTeen for adolescent siblings https://www.facebook.com/groups/SibTeen

Hermanes Capaces for Spanish-speaking sibs around the world https://www.facebook.com/groups/hermanescapaces

Siblings Of Schizophrenia And Other Serious Mental illness for siblings of individuals with mental health concerns https://www.facebook.com/groups/174361526486445

Organizations

Sibling Support Project http://sibsupport.wwwaz1-tr100.supercp.com/

National Sibling Leadership Network (links to affiliated state chapters) https://siblingleadership.org/

Siblings with a Mission http://www.siblingswithamission.org/

Sibling Transformation Project https://www.siblingtransformation.org/

Special Needs Siblings https://specialneedssiblings.com/

SibStrong https://www.sibstrong.org/

National Black Disability Coalition https://www.facebook.com/black.disability

WisconSibs https://wisconsibs.org/

Sandy Feet Initiative (CA) https://www.sandyfeetoc.org/

Siblings Canada https://canadiancaregiving.org/siblingscanada/

Sibs (UK) https://www.sibs.org.uk/

Siblings Australia http://siblingsaustralia.org.au/

Actualizados (Argentina) https://actualizados.com.ar/

Siblings of Special Needs Nigeria https://www.instagram.com/sosneedsng/

SibTane (Japan) https://sibtane.com/

Alex’s Lemonade Stand Foundation (ALSF) SuperSibs, supporting siblings of children with cancer https://www.alexslemonade.org/childhood-cancer/for-families/supersibs

Parent to Parent USA, offering peer support for parents of children with support needs that strengthens the entire family https://www.p2pusa.org/.

Mesothelioma Hope, https://www.mesotheliomahope.com/resources/children/

Podcasts

“Constant Chaos” pod focuses on siblings: http://sibsupport.wwwaz1-tr100.supercp.com/constant-chaos-podcast-explores-supporting-siblings/

Sibling Support on the Better Behavior Show with Dr. Nicole Beurkens: http://sibsupport.wwwaz1-tr100.supercp.com/sibling-support-featured-on-the-better-behavior-show-with-dr-nicole-beurkens/.

“Once Upon a Gene” siblings edition: https://apple.co/2TxHDWC

“Live from Sibshops!” podcast from “A Piece of Hope” series produced by Appleseeds Behavioral Center in Georgia http://bit.ly/2oDvW3q

“Kid Logic” from This American Life https://www.thisamericanlife.org/605/kid-logic

Racial Equity Resources

Sibling Support Project Message on Tolerance

Anti-Racist resources for Sibshop Facilitators

BIPOC Sibling Roundtable Series: BIPOC Siblings Share their Stories

Reimagined (formerly Anti-Racism Daily)

https://equityinthecenter.org/aww/

Working Inside Out: Tools for Change by Margo Adair

The Future of Healing: Shifting From Trauma Informed Care to Healing Centered Engagement by Shawn Ginwright, Ph.D.

https://www.racialequitytools.org/glossary

Research

The Sibling Leadership Network has compiled a database of major sibling studies since 1962. A tremendous resource!

Sibling Relationships Around the World: Experiences of Siblings of Special Olympics Athletes – Findings from a study on siblings in Africa, Asia and Latin America 1-page Summary: https://bit.ly/3fcyGZR

Sibling engagement resources from Special Olympics: https://resources.specialolympics.org/community-building/families/sibling-engagement

Epilepsy & Behavior journal article on the impact that DEE’s have on siblings, titled “Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies.” https://bit.ly/3sKUXI4

Resources for Grieving Siblings

Safe Crossings Foundation (to help children – see “get help” for activities to use with kids): http://safecrossingsfoundation.org/

The Dougy Center – Supporting Grieving Siblings: https://www.dougy.org/grief-resources/tip-sheets/supporting_grieving_siblings/1631

Armfuls of Time: The Psychological Experience of the Child With a Life-Threatening Illness by Barbara M. Sourkes (For parents/professionals)

Annie’s Hope Center for Grieving Kids http://annieshope.org/

The Hospice Foundation – grief resources https://hospicefoundation.org/Grief-(1)

What’s Your Grief? Website resources https://whatsyourgrief.com/

Loss of a Special Needs Sibling Facebook Group + online meetings (for adult sibs): https://www.facebook.com/groups/554229302095590

Compassionate Friends https://www.compassionatefriends.org/ FB group: https://www.facebook.com/TCFUSA

Crisis Text Line serves anyone, in any type of crisis, providing access to free, 24/7. https://www.crisistextline.org/text-us/ Text HOME to 741741 to reach a Crisis Counselor

Sibling Leadership Network grief info: https://siblingleadership.org/2020/07/16/new-grief-loss-resources/ and Sib Grief Webinar by Shruti Tekwani from September 2019

Trauma-Informed Practices

Books

Gabor Maté:

Peter Levine:

Bruce D. Perry:

Bessel van der Kolk: The Body Keeps the Score

Stephen Porges: The Polyvagal Theory (for professionals)

Mark Wolynn: It Didn’t Start With You

Thomas Hübl: Healing Collective Trauma

Julie Brown Yau: The Body Awareness Workbook for Trauma

John Sarno: The Mindbody Prescription: Healing The Body, Healing the Pain

Jeffrey Rediger: Cured: Strengthen Your Immune System and Heal Your Life

Anita Morjani: Dying to Be Me

Mark Epstein: The Trauma of Everyday Life

Daniel Siegel: The Developing Mind

Diane Poole Heller: The Power of Attachment

Laurence Heller and Aline Lapierre: Healing Developmental Trauma

Nadine Burke Harris: The Deepest Well: Healing the Long-Term Effects of Childhood Adversity

Resmaa Menakem: My Grandmother’s Hands: Racialized Trauma and the Pathway to Mending Our Hearts and Bodies

Videos

childhood trauma | PBS NewsHour

https://youtu.be/95ovIJ3dsNk

https://youtu.be/uH5JQDAqA8E

Other

SAMHSA’s Approach to Trauma-Informed Practices https://ncsacw.samhsa.gov/userfiles/files/SAMHSA_Trauma.pdf

https://www.aap.org/en/patient-care/foster-care/supporting-children-who-have-experienced-trauma/#traumatoolbox

https://downloads.aap.org/AAP/PDF/ttb_aces_consequences.pdf

Videos

Meet the Sibling Support Project https://youtu.be/_mYxPORJkN4

Meet Anya: https://youtu.be/qyz5Ds1m0q4

Yale New Haven Hospital In-Person Sibshop and Sibshops featured on ABC-TV’s 20/20: https://www.youtube.com/watch?v=gLi5AWpYASQ

Alicia Meneses Maples TedX San Antonio talk: Recognizing Glass Children https://www.youtube.com/watch?v=MSwqo-g2Tbk

Other Resources

The Sibling Support Bracelet. A symbol of sibling strength, designed by a sib to unite our community and donate 50% of proceeds to The Sibling Support Project.

Conversation Starter Cards (free, available in English and Spanish): https://health.mo.gov/living/families/connectwithme/cards.php

Sibling Resources for families and providers (variety, created by the NY State DD Council, the Sibling Leadership Network, and sibsNY): https://siblingresources.org/

Alateen for adolescents who have been affected by someone else’s drinking: https://al-anon.org/newcomers/teen-corner-alateen/

ABA Resources:

ABA Debate Series from the Arc of King County, Seattle WA https://arcofkingcounty.org/resource-guide/webinar-videos/unpacking-the-aba-debate-series.html

The On Time Autism Intervention Podcast, University of Washington: