The SibSpot Resource Library

In Person – The shelves of resources are just outside our office doors in Appleton. We welcome you to stop by and browse the collection.

Here on our website – Find a list of authors and publisher information for your convenience when looking for resources for siblings.

Three great downloadable resources for young siblings, teen siblings, and parents. While these resources from the Organization for Autism Research focus on autism, the information and activities can be relevant for siblings of any disability.

• Young Siblings Guide: Autism, My Sibling, and Me
• Teenage Siblings Guide: Life as an Autism Sibling: A Guide for Teens
• Parent’s Guide: Brothers, Sisters, and Autism: A Parent’s Guide to Supporting Siblings

Featured books

Books about or by Sibs published between 2018-2022 –
Click to download a book list compiled by the Appleton Public Library that includes books available from there or from book sellers.  Titles are alphabetical by author’s last name.

WISCONSIB AUTHOR

Walk with Me by Kristin Lanari (sibling and former member of the WisconSibs Board of Directors, member of the Sibling Leadership Network board of directors)

Walk With Me is a 72-page collection of uplifting stories written by children and adults who have brothers and sisters with Down syndrome. It was developed and edited by Kristin Lanari, Appleton, Wisconsin, in honor of her relationship with her sister Lauren.

The book includes thirty-one (31) stories and photographs that describe the joys and challenges of having a sibling with a disability.  It is intended to:

• Acknowledge and recognize the importance of the sibling relationship through the lifetime of persons with Down syndrome and other disabilities.
• Help parents of children with disabilities understand and value the sibling relationship.
• Help newly diagnosed families understand what to expect.
• Help educate medical and human services professionals about life with a sibling with Down syndrome.
• Help educate public officials about the importance of funding programs and services that enhance the quality of life.
• Enable the authors to help others by sharing their experiences.

You can purchase Walk With Me online at stores.lulu.com/lanarinet .

This book was made possible by a grant from the Wisconsin Board for People with Developmental Disabilities (BPDD).  Click here for more information about the BPDD.

All photography donated by Lanari Photography.

Books by Don Meyer, creator of Sibshops®

Sibshops:  Workshops for Siblings of Children with Special Needs

Don Meyer and Patricia Vadasy (Paul H. Brookes Publishing Co.)

This is the long-awaited revision of the essential guide for organizing and running support groups for siblings of children with special needs, featuring 30 new activities.

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

Don Meyer, editor (Woodbine House)

The 39 compelling essays in this powerful anthology express a diverse range of sibling experiences and attitudes.  The contributors range in age from 20 to 70, and have brothers and sisters whose disabilities include Down syndrome, autism, cerebral palsy, seizures, visual impairment, fragile-X syndrome, intellectual disability, or mental illness.  It features the best sibling writers from the US, Canada, England, and Japan including Rachel Simon, Mary McHugh, Kate Strohm and Veronica Chater.

Views from Our Shoes:  Growing Up With a Brother or Sister With Special Needs

Don Meyer, editor (Woodbine House)

“I can’t imagine having a plain old sister,” writes Ryan Clearwater, age ten, in one of the 45 essays in this book.  Ryan and the other boys and girls whose essays are featured in this collection range in age from four to eighteen.  They share their experiences as the brother or sister of someone with a disability – the good and bad aspects, as well as many thoughtful observations.

The Sibling Slam Book:  What It’s Really Like To Have A Brother Or Sister With Special Needs

Don Meyer, editor (Woodbine House)

Give teenagers a chance to say what’s on their minds, and you might be surprised by what you hear.  That’s exactly what Don Meyer did when he invited a group of 80 teenagers, from all over the United States and abroad, to talk about what it’s like to have a brother or sister with special needs.  Contributors include two WisconSibs from the Fox Valley, Amanda Doersch and Christiana Redman.

Living With A Brother or Sister With Special Needs: A Book for Sibs

Don Meyer and Patricia Vadasy (University of Washington Press)

Written for young readers, the book discusses specific disabilities in easy to understand terms.  It talks about the good and not-so-good parts of having a brother or sister who has special needs, and offers suggestions for how to make life easier for everyone in the family.  This revised and updated edition includes new sections on attention deficit hyperactivity disorder, fetal alcohol syndrome, fragile X syndrome, traumatic brain injuries, ultrasound, speech therapy, recent legislation on disabilities, and an extensive bibliography.

Uncommon Fathers:  Reflections on Raising a Child With a Disability

Don Meyer, editor (Woodbine House)

A fascinating collection of 19 essays by fathers who reflect and write about the life-altering experience of having a child with a disability.  These fathers provide an introspective and honest look at this deeply emotional subject, offering a seldom-heard perspective on raising children with special needs.  This book should also be helpful to partners, family, friends, and service providers who will appreciate this rare forum and perhaps learn from what these fathers have to say.

Other books in the SibSpot

Andy and His Yellow Frisbee
Mary Thompson (Woodbine House, 1996)

The new girl at school tries to befriend Andy, a boy with autism who spends every recess by himself, spinning a yellow Frisbee under the watchful eye of his older sister.

Ben, King of the River
David Gifaldi (Albert Whitman & Company, 2001)

Chad experiences a range of emotions when he goes camping with his parents and his five-year-old mentally disabled brother Ben, who has many developmental problems.

Ian’s Walk:  A Story About Autism
Laurie Lears (Albert Whitman & Company, 1998)

A young girl realizes how much she cares about her brother who has autism when he gets lost at the park.

It Isn’t Fair!  Siblings of Children with Disabilities
Edited by Stanley D. Klein & Maxwell J. Schleifer (Bergin and Garvey, 1993)

This book is divided into five parts.  In Part I, an interview with college students is followed by an article by Meyer Schreiber, one of the first professionals to write and speak about the needs of siblings.  In Part II, there are eight articles by parents and on a team of professionals.  In Part III, there are seven articles written by siblings reflecting on their experiences.  A series of case studies highlighting sibling relationships follows Part IV.  The book concludes with Part V and a series of brief articles written by children.

Joey and Sam
Illana Katz and Edward Ritvo, M.D. (Real Life Storybooks, 1993)

Although it is sometimes hard to have a younger brother like Sam who is autistic, Joey is proud when Sam’s special class performs at a school assembly.

Our Brother Has Down’s Syndrome:  An Introduction for Children
Shelley Cairo (Annick Press, 1985)

Tara and Jasmine tell about how their little brother, Jai, who has Down syndrome is  “a little different (we all have different things about us) but mostly is just like the rest of us.”  Large color photographs and a sensitive text describe their special brother and their family life.  A clear explanation of Down syndrome is included.

Riding the Bus with My Sister
Rachel Simon (First Plume Publishing, 2003)

A true story about the author and her spirited sister who has cognitive disabilities and spends nearly every day riding the busses in her Pennsylvania city.  The story tells how riding the bus with her sister for one year changes the author’s life forever.

Russell is Extra Special:  A Book About Autism for Children
Charles A. Amenta III, M.C. (Magination Press, 1992)

Explaining autism to children can be a difficult task.  This heart-warming portrayal of an autistic boy and his family will help children and their parents understand this serious developmental disorder.  An introduction for parents and a list of resources supply further information.  In addition, as they enjoy and identify with the family photographs so similar to their own, children will develop greater sympathy for those who may be different from themselves.

Siblings of Children with Autism:  A Guide for Families
Sandra L. Harris, Ph.D. (Woodbine House, 1994)

Siblings of Children with Autism is an invaluable guide to understanding sibling relationships, how autism affects these relationships, and what families can do to support their other children as they cope with the intensive needs of a child with autism.  Harris offers compassionate and authoritative advice and strategies for dealing with specific issues that are often troublesome for siblings.  She also teaches parents how to improve communication in the family, balance personal and family time, and foster interaction between children with autism and their brothers and sisters.

Siblings Without Rivalry:  How to Help Your Children Live Together So You Can Live Too
Adele Faber & Elaine Mazlish (Avon Books, 1987)

Siblings Without Rivalry guides the way to peace and tranquility with humor, compassion and understanding, and the illustrated, action-oriented, easy-to-understand stories will make life easier for both siblings and their parents.

Sisters, Brothers, and Disability:  A Family Album
Lydia Gans (Fairview Press, 1997)

The stories of 26 families raising children with special needs at home.  Includes 142 photographs that show compassion, patience, and matter-of-factness sisters and brothers share as they deal with the challenges of living with differently-abled siblings.

Special Siblings:  Growing Up with Someone with a Disability
Mary McHugh (Hyperion, 1999)

The real life story of a woman who raised her disabled brother after their mother’s death. Her insights into the positive impact that her brother had on her life and development are simply inspirational.

What About Me?  When Brothers and Sisters Get Sick

Allan Peterkin, M.D. (Magination Press, 1992)

Laura experiences conflicting emotions when her brother becomes seriously ill.  Includes suggestions for parents to help their well children cope with a chronically ill sibling.

Resources for Journey Forward participants

Introduction video to Journey Forward

Click to see 3 minute video

PowerPoint Workshop #1 presentations of Journey Forward

• https://wisconsibs.org/wp-content/uploads/2023/01/Journey-Forward-2023-Workshop-1.pdf
• https://wisconsibs.org/wp-content/uploads/2023/01/ADRC-Outagamie.pdf

Why future planning is important –

Video – https://www.specialneedsplanning.com/investment-news-video

Journey Forward Workshop #2 Booklet – click HERE

Vocabulary – Sib Tips
https://146483.fs1.hubspotusercontent-na1.net/hubfs/146483/Publications%20for%20POWER%20site_SEPT%202022/SibTips_05_2021.pdf

Need a review of the information about Special Need Trusts?  Check out the Wispact website.

What is a Trust?

Looking for an attorney in your area of Wisconsin?  https://www.wispact.org/attorneys/

DOWNLOAD LETTER OF INTENT – Journey Forward Letter of Intent – https://wisconsibs.org/wp-content/uploads/2018/03/WisconSibs_Journey_Forward_Letter_of_Intent.pdf

Government Benefits Overview
– ADRC video
– ADRC slides from video
– link to The Arc Future Planning Center – Public Benefits

If you are reading this, you are doing more than most about planning for the future.
Click Here for “Few Parents Plan For Future Of Children With Disabilities”

11 Tasks of Future Planning

Guardianship 101

Digital Resources

Do you have a sibling with autism?  Contact us and we’ll send you a great activity book created by the Organization for Autism Research (OAR) called Autism, my sibling, and me.

Thanks to grants from the Friends of Autism and Infant Welfare Circle of King’s Daughters Funds, WisconSibs is distributing these books to siblings of children with autism and other developmental disabilities.  You can also request copies from the OAR by calling 866-366-9710.

For teens of siblings with autism, click for another great resource from OAR (Organization for Autism Research) called Life as an autism sibling:a guide for teens

You can also request copies from the OAR by calling 866-366-9710.

Resources for “Sibvivors”

We believe children growing up with disabilities (their own or their sibling’s) will not only survive, but thrive through their sibling journey if they are able to find information, tools, skills and support. You could call them, “Sibvivors”. Check out these resources for children that address concerns of children’s safety, perseverance, respect, citizenship, teamwork, and other support to Sibvivors.

Safety Red Cross Info Grades K-2

Sibshops are offered monthly from September to April for children ages 6-12.

Summer programs include a backpacking Sib Camp for ages 10-15 and SibDays of Summer for ages 6-12.

Groups, Schools, Service Clubs and Conferences

WisconSibs staff, board members and siblings themselves are available to speak to your groups about the organization, and about the joys and challenges of living with a sibling with a disability.  Contact the WisconSibs office for details and availability.

Topics include:

Life Beyond the Stares

Individual speakers are available who can make 20-60 minute presentations, or you may choose the “Sibling Talk Show” version (40-75 minutes, depending on time available) which includes a show host and a panel of siblings, either adults or children.  They will be prepared to share interesting and inspiring stories as well as take questions from your audience.

They can discuss topics such as:  the treatment of kids with disabilities; embarrassing moments; feelings, such as guilt, anger and pride; the legal, financial, care and social challenges of having disabilities (and being a sib); advocacy and many more.  They talk from the heart.  Their stories will charm you, make you laugh, make you cry and everything in between.  Please specify if you prefer an individual speaker, or the “Talk Show” version.

Parenting the “Other” Child

What are the issues parents need to be aware of in parenting not only the child with special needs, but the “other” child or children?  Hear the Top Ten Things Sibs Want Parents to Know. Discussion and tips for parenting, parent-to-parent.  Presentation can be tailored to your group for as short as a 20-minute presentation or as long as a half-day workshop.

Welcome to Our World

Discussion and sharing about what siblings want and need as learned from research, experience and personal observations and how service providers can make a difference through low- or no-cost methods.

Top 10 Tips for the Club Sandwich Generation

Adults who have aging parents, growing children, PLUS a sibling with disabilities has been called the ‘Club Sandwich Generation’.  Harriet Redman, M.S. Ed., founder of WisconSibs, presents this lively, interactive presentation designed for adult siblings or anyone interested in their unique concerns. You’ll gain ideas and insights into the issues of adults who may be raising young children while also concerned about their aging parents and the life and future of their sibling with disabilities.  You will be introduced to Journey Forward, a program uniquely created for adults concerned about the future with their siblings with disabilities.

Other “TOP TEN” presentations include:

• Top Ten Things Siblings Wish Their Parents Knew
• Top Ten Things Siblings Wish Professionals Knew

Topics tailored for your group

Tell us about your group and we can work with you to provide an interesting program around topics like: value of respite and finding it, sibling relationships, siblings as caregivers, siblings and future planning, starting a nonprofit, siblings as supernormals, even life hacks for caregivers.  15 minutes – 4 hours

What We Hear

“Liked hearing sibling viewpoints and experiences and advice for others.”

“Enlightening!”

“I felt great driving home reflecting on your presentation.”

“Wow! What an incredible presentation. Kids in our community are so lucky to have your organization as a resource.”

You’ve probably heard about the “sandwich generation.”  That’s the group of adults who are “sandwiched” between providing or overseeing care for their parents, while at the same time caring for their own families and young children.  Now, if you add a sibling with a disability to the mix, that group is more of a “club-sandwich generation” – dividing their loyalty among parents, their own children, and the brother or sister with a disability.

More than ever before, adults who have siblings with disabilities are being called upon to coordinate the care of their siblings at the very least, and provide direct care in many cases. People with disabilities are living longer, often outliving their parents. According to the National PLAN Alliance in 2002, more than 65% of adults with mental illness and 81% of adults with developmental disabilities live with their parents, most of whom are already in their 60s, 70s and 80s.

The number of elderly parents caring for their children with disabilities will continue to increase, while social and financial supports continue to decrease.  That leaves long waiting lists and gaps in services in most areas. And that adds to the stress adult sibling can face.

That’s where WisconSibs can help. We offer a variety of programs that provide adult siblings the opportunity to meet other adult siblings, connect with information and local resources important to their unique issues, and even provide fun social activities they can enjoy with their brothers and sisters.

Got Questions? Click HERE for Q & A about Journey Forward workshops Click HERE for Q & A from adult siblings

https://www.bbc.co.uk/sounds/play/m000p8z0

Stories

Award-winning author Rachel Simon describes her relationship with her sister, Beth, who has a developmental disability.

“She is my sister, and I remember tossing grass cuttings under the house with her when we were little, and singing about ‘The Impossible Dream’ in the car with her when she was learning to name tunes. I remember the tearful ride home from La Guardia. I’ve always figured there must be some grief in her heart, but I don’t see the things that she censors. What she must censor, I correct myself, as we all do when we grow up and make ourselves distinct from our families. I love her, and at last I believe that she loves me too, but I know that in her eyes I will always be the big sister. It is both my bridge to her, and the moat eternally between us.”

From Riding the Bus with My Sister by Rachel Simon.

The following is a true story with names changed to protect privacy.

Samantha is 51 years old. Her older sister with cerebral palsy still lives with her parents, now in their 80s.

Samantha is frustrated, angry and resentful. She wants her parents to discuss a plan for the care of her sister, but she is reluctant to bring up the topic for fear it will upset her parents.

As Samantha grew up, she was expected to help care for and entertain her sister. As she recalls her childhood, she felt the isolation, embarrassment and fear of disappointing her parents that many siblings feel as they grow up. She loves her sister and the two have always had a very close relationship.  But her parents have left Samantha out of discussions about the future care of her sister.  Samantha realizes that perhaps they feel this would protect her, but she feels hurt.

Now that her parents are elderly, it is an unspoken assumption that Samantha will take over as primary care giver. But without a plan and honest discussion with her parents, she feels inadequately equipped and fearful of the future.

Actress Eva Longoria, talks about her sister with special needs. See her video interview.

Welcome to Our World

In the United States, over 5 million people have assumed – or expect to assume – responsibility for a dependent sibling, and that number is growing as baby boomers age.

With that many siblings becoming more involved as “natural supports” for their brothers and sisters, there is a greater and greater need to get involved in planning for the future – their own and their sibling’s.  As Wisconsin sibling Ashley Baldwin stated in her interview with the Appleton Post-Crescent, “[As siblings,] it’s our biggest worry. What are we going to do about our siblings’ future? And how do we make sure we do the best thing for them?”

Ashley credits WisconSibs’ Journey Forward program (formerly called Future is Now) for getting the information and the encouragement she needed to get her parents and her sister, Katie, moving forward in making the connections and the decisions to ensure Katie would lead a life of dignity and happiness.

Here’s how another adult sibling recently described her situation:

“Now that my kids have almost flown out of the nest, I realize that I need to seek support for the next phase of life which consists of helping elderly parents and sibling care issues. I think this phase of life is harder. With my kids, I had the authority to make decisions in directing their care and growth. With my sibling, I have absolutely no authority, but I will face all of the consequences of my parents’ decisions. I feel like my role is to just be ready to mop up the mess that results from parental decisions that were based on their refusal to work with me or see the reality of the situation.”  Email message from adult sibling, May 2012.

Tips for Adult Siblings

• When you feel that others do not understand your situation, talk to other siblings. Join a sibling support group or SibNet, a listserv group available.  Find a book about the experiences of siblings, like Special Siblings – Growing Up with Someone with a Disability, by Mary McHugh or one of several books listed in Books and Resources.
• You feel you have missed out on something as a child. It is OK for you to lead a life of your own and still be a part of your family. Many siblings feel guilty about being talented in some way. Allow yourself to enjoy your talents, as this will improve how you feel about yourself. Celebrate your achievements, however small you think they are. Ask yourself ‘What have I achieved this week?’ and give yourself a reward for these. Do those things now that you wished you could have done as a child! For example camping, playing drums, spreading all your stuff over the kitchen floor, having friends stay at your house.
• Sometimes you feel that your brother or sister with a disability is still the focus of attention in your family and you feel resentful. This is normal even though you may think this is not a very ‘adult’ way to feel. Make an opportunity to talk to your parent about what it was like for you in childhood. Ask him/her if they ever wondered about your experience of being a sibling. Tell him/her about the benefits of being a sibling as well as the difficult things. Ask your parent if you can have some of their undivided time for something special for you: going out together, helping to decorate a room, playing with your children, going shopping, etc.
• You are unsure about the genetic implications for you (or your children) of your brother’s or sister’s condition. Find out more about your brother or sister’s condition. There is more medical information available now than when you were a child. Discuss with your parents or medical professionals, or search the internet.

Sibshops®

Sibshops are workshops for children ages 6-12 who are brothers and sisters of . . .

Summer Programs

For children and teens, we offer camps and leadership opportunities during the summer . . .

Future Planning

For adult siblings, our Journey Forward program helps you develop a future plan with your sibling and other family members . . .

Social Events

Throughout the year, we organize fun events for adult siblings or families who have children with disabilities that help siblings . . .

Sibling’s Choice Awards

Providing a way for siblings to honor quality caregivers, our Sibling’s Choice Awards . . .

Fundraising Events

While we depend on the generosity of donors to make our programs possible, our events are not just about the money . . .

Volunteer Training

Interested in being a Sibshop leader, event planner or office helper?  We’ll provide you with . . .

Consulting/Coaching/Collaborating

Want to engage siblings in your corner of Wisconsin?  We can help . . .

Presentations

Staff, board members and siblings are available to speak to your group meeting or conference . . .

Siblings looking for information with a big dose of peer support, and a lot of fun keep coming back.  Adult siblings often tell me, “I wish you had been around when I was growing up, but glad you are here for me now.” – Harriet Redman, WisconSibs, Inc Founder