Interactive Story Time

Calling for expressions of interest

Living with Prader-Willi Syndrome is challenging for the individuals but can be just as challenging for their family including siblings. 

Children who have a sibling with a disability are often more caring and kind, sensitive and responsive to the needs of others, tolerant and compassionate, mature, responsible, independent and empathetic. They’re also unlikely to take their own good health for granted.

www.raisingchildren.net.au

Research indicates that siblings of children with a disability often grow up surrounded by stress but without the cognitive and emotional maturity to deal with their experiences. This can cause confusion because, on the one hand, a child may feel loving and protective feelings toward their brother or sister, but at the same time, they may feel resentment, embarrassment, guilt, sorrow and fear.

It is for this reason that we at the PWSA Victoria felt that it was important to acknowledge siblings and provide them with information to help them understand how to care for their brother/sister with Prader-Willi Syndrome and most importantly how to best care for themselves, deal with their emotions and ensure they are putting themselves first.

We are currently working on the next part of the Beyond the Diagnosis series which will help fill the gap in information that exists for younger siblings.

This project will involve creating simple age-appropriate information in the form of a picture book – A storybook for siblings by siblings. Once we have a basic draft ready, we will host an interactive reading session (via zoom) of the book where children from our community can ask questions and help build on the information already contained within the book.

It is our hope that this picture book will also help childcare centres and early childhood educators explain Prader-Willi Syndrome to other children.

Our plan to also develop the above project to include a more informative booklet for older siblings. Expressions of interest for this focus group will be opening shortly. 

This stage of the Beyond the Diagnosis series would not be possible without the generosity of the  Rotary Club of Box Hill Central and  Blackburn South Community Bank Branch(BSCBB) of the Bendigo Bank.

If you are interested in being involved in the initial interactive book reading of the draft storybook for younger siblings (under 7), we would love to hear the honest feedback of our young book critics.  Please register your interest by emailing info@pwsavic.org.au 

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Article By Sarah Rees

Sarah lives in Geelong and her youngest son Jayden was born with Prader-Willi Syndrome. Sarah has been an active member of the Prader-Willi Syndrome community and holds a position on the Prader-Willi Syndrome Association of Victoria Inc. board and holds the position of Vice President and Event Coordinator.