Living with a brother or sister who has a disability can be challenging, but it also provides siblings with opportunities to learn empathy, tolerance and patience, which can only help them throughout their lives.
Some siblings develop more insight, independence and maturity and may become more resilient, driven, or even find inspiration through having a brother or sister with a disability.
Source: PWSA NZ
Siblings will hear adults talking about PWS and when they are ready, will ask about it. Parents should answer questions truthfully and on a level that they can understand. A lack of information may cause misunderstandings or unnecessary fears. It’s important for children to know that this is something they can ask about and that parents will make the time to listen. They need to know that it’s ok to share their feelings about PWS and their sibling, even if they are negative ones.
Source: PWSA NZ
Resources:
Many people who care for a loved one do not see themselves as being young carers. They think of themselves as a family member, a brother, a sister, a son, or a daughter and can presume that all families provide this sort of support. As a result, they often don’t realise that there is help available to them.
Young Family Carers Ireland : Young carers are children and young people under the age of 18 whose lives are in some way affected because they provide care, assistance or support to another family member in the home. Young adult carers are recognised as a separate group and are aged between 18 and 24 years.
For Brothers and Sisters – What is PWS? How does it affect your brother or sister and how does it affect you? – A resource by PWSA UK.
The PWSAI Family Weekend is a great opportunity for siblings to get to know other siblings, other people who understand.
PWSAI are offering all of our family’s access to the Employee Assistance Programme through the VHI. This service will be provided free of charge to all family members aged 16 years +
More information here
Prader Willi Syndrome Association Ireland 