Sibling Outreach
PURA Siblings – you are not alone in this journey! We are interested in finding ways to support you as a PURA Sibling.
Welcome to our PURA Sibling Outreach Page!
We are so excited to be offering this outreach to the many PURA siblings in our community. Our goal is to offer a variety of different ways to support siblings of all ages, including meet ups, podcasts, books, websites, and other resources to help along your journey.
Our Sibling Ambassador, Chrissie Brock, has been hard at work putting together these initial offerings and has many ideas on how to expand them going forward. We will begin offering meet ups for adult siblings first, and will add on different age groups. Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar.
Are you a PURA Sibling?
Click the link below to join our email list to stay up to date on all of our sibling offerings and feel free to email us if you have ideas or are interested in helping out. Scroll down the page to see our siblings resources below!
My name is Chrissie and I’m the older sister to Karen, who received her PURA diagnosis the day before her 41st birthday in 2019. Karen lives in Melbourne where we were both born and brought up. I now live in England with my husband and 2 dogs. I hope that by helping to set up a siblings network with the PURA Syndrome Foundation, we can create a community for siblings of our wonderful PURA people to meet, share stories and exchange experiences. If you have any questions, please contact me at siblings@pura-syndrome.org.
Sibling Meet Ups
We are beginning to offer PURA Sibling meet ups, beginning with our adult PURA sibling population. Younger age group meet ups will follow, please check back for details.
See the dates and times (with time zones) below, zoom links and more information coming soon! Please sign-up for our email list to ensure you receive our updates.
PURA Conference Siblings Panel
For our 2021 PURA Syndrome Virtual conference, PURA siblings Leo Kittay, Emily Overfield and Samantha Napolitano recorded a siblings panel that touched on many aspects of being a PURA sibling. It was the first of its kind and those who participated realized that many of them had shared emotions and experiences growing up with a PURA sibling.
Resources
National organizations offering support to siblings of children with disabilities (or chronically ill children)
https://siblingsaustralia.org.au/ (Australia Based)
https://www.sibsconsulting.com/ (Aus sibling support services)
https://canadiancaregiving.org/siblingscanada/ (Canada based)
https://www.stiftung-familienbande.de/en/index.html (Germany)
https://www.siblings.it/ (Italy)
https://parent2parent.org.nz/how-we-help/sibsupport-nz/ (New Zealand)
https://www.facebook.com/SibsUnite/ (Singapore)
https://sibtw.home.blog/ (Taiwan)
https://www.sibs.org.uk/ (UK Based)
https://www.supersiblings.org/ (UK organised meet ups for sibs)
https://siblingsupport.org/ (US based but Sibshops are in 20 countries now)
Podcasts
The Special Siblings Podcast
Podcast episodes from The Rare Life about siblings for Parents
https://therarelife.org/show-notes/ep-47-siblings-w-katie-taylor-ccls
https://therarelife.org/show-notes/ep-50-sibling-perspective-w-katherine-acton
Books for Young Sibs (Ages 4-8)
Max and Abby
Told through the eyes of big sister Abby, Max and Abbyshines a gentle light on the challenging topic of childhood dementia and disability, revealing the highs and lows of life as a sibling of a child with additional needs. By Ineka Whiteman PhD (Author), Deborah Moore (Illustrator)
It’s OK to be Different
A Children’s Picture Book About Diversity and Kindness, by Sharon Purtill (Author), Sujata Saha (Illustrator)
Extraordinary! A Book for Children with Rare Diseases
What makes a child with a rare disease extraordinary? Explore the answer to this question while sharing an illustrated conversation with Evren Ayik about what he has learned while growing up with his own rare disease. Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. By Evrin and Kara Ayik
Books for Pre Teen (Ages 9-12)
The thing about Oliver
Touching on family relationships and the challenges of life around a disabled sibling, the book is about Tilly trying to follow her dreams even though she knows Olivers needs must come first. By Deborah Kelly
Views from our shoes: Growing up with a brother or sister with special needs
A collection of real-life accounts from the brothers and sisters, aged from 4 to 18 years, of children with a disability in the US. Edited by Donald J Meyer, illustrated by Cary Pillo
Books For Young Adults (Ages 13+)
Rules
A book about acceptance and trying to fit in. Catherine, 12, finds herself torn between her love for her little brother David and her frustration with dealing with his autism. What will getting to know Jason, who talks with words printed on cards, and Kristi, who’s new in town, reveal about friendship and what’s really “normal?” by Cynthia Lord
The Sibling Slam Book: What It’s Really Like To Have A Brother Or Sister With Special Needs
Don Meyer, creator of Sibshops and author of Views from Our Shoes invited together a group of 80 teenagers, from all over the USA and abroad, to talk about what it’s like to have a brother or sister with disability. Their unedited words are found in this book, a brutally honest, non-PC look at the lives, experiences, and opinions of siblings without disabilities. Edited by Don Meyer
Books for Adults
Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs
This book reveals the difficulties faced by siblings at all stages of life, from early childhood through adulthood, when siblings must often assume responsibility for the care of their disabled brothers and sisters. Though the book looks honestly at the many challenges that siblings face, it is full of encouragement and practical strategies. By Kate Strohm
The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults With Disabilities
It offers a sense that you’re not alone, tips on how to talk to your parents about plans for your sibling, and a crash course in guardianship, medical & legal issues, and government benefits if you’re already caring for your sib. By Don Meyer and Emily Holl
Riding the Bus With My Sister: A True Life Journey
The book is about the time the Author spent with her sister Beth, who has a developmental disability, and whose lifestyle revolves around riding buses in her home city of Reading, Pennsylvania. By Rachel Simon
Films
Take Me Home – 2023 Short Film screened at 2023 Sundance Festival
The strength of “Take Me Home” lies in its exploration of the strained relationship between Anna, who has Cognitive/Developmental Disability and her sister, Emily. Faced with the profound loss of their mother, the siblings are compelled to confront their disconnection and the importance of meaningful communication.
The Black Balloon – 2008
All Thomas wants is a normal adolescence but his autistic brother, Charlie, thwarts his every opportunity. Will Thomas, with the help of his girlfriend, Jackie, accept his brother?
Do you need help? Support?
Don’t hesitate to reach out!
We are here to help you with whatever we can. Please click the link below to email us!