Support for Parents and Carers

If your child has Prader-Willi Syndrome (PWS), it’s easy to get caught up in the day-to-day care and routine that surrounds your child, but it’s important to look after your own wellbeing too. The best care you can provide to your child is when you yourself are physically and mentally well.

Your General Practitioner can assist if you need support and can provide you with a mental health plan. Genetic councillors can also help. ‘PWSA Victoria Family Members’ and  ‘Friends of the Association Members’ are provided with access to the EAP Assist – PWSA Victoria Community Assistance Program. This program is a free professional counselling service. Details of the service and how to access, would have been provided in your PWSA Victoria member welcome pack.

“it’s lonely, but when you meet someone who gets it’s transforming”

Talking to other parents can be a great way to get support. Speaking to others who have felt the same emotions and challenges. Similarly, they can also share your joy as special milestones are achieved. It can be a great way to build a strong foundational support network for you and your family. Getting to know other families with children who have Prader-Willi Syndrome can also be beneficial for the whole family. “You are not alone” is undoubtedly a message for individuals with Prader-Willi Syndrome, their siblings and parents and extended families.  

“You are not alone”

For parents and carers of children with Prader-Willi Syndrome, there is an Australian online community that can be found on Facebook. The group is called Support for Aussies Facebook group. The online community is managed by the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) and is made up of parents of children with Prader-Willi Syndrome from all around Australia.

If you have other children, important to reassure them and let them know that they are as important to you as their sibling with Prader-Willi Syndrome. It’s important to talk with them, spend time with them, and find the right support for them too. There is some excellent information on the Australian parenting website that can assist with supporting siblings of children with a disability.

Older children will be aware of changes to the family routine and dynamics when the new baby arrives home, and toddlers will want time with Mum if she has been in the hospital for a few days.  As with any child meeting a new brother or sister and sharing their parents, there is a need to balance the requirements of all family members. Working together with your partner or other family members to share the increased load (especially at feeding time) allows you to spend time with the other children. 

Having a sibling who has additional needs and requires extra care and time can be difficult for older children too. They may be worried about the baby as well as feeling resentful of the time spent with the new arrival. Allowing them to help in small ways can make a big difference in developing a bond and sharing time with you at the same time. Children, no matter what age, can be confused or not even aware of why they feel like they do and will possibly act out or withdraw. It is not surprising because your own emotions are probably just as confusing. Explaining Prader-Willi Syndrome to a sibling is very age-dependent, but there are resources that may help to explain the syndrome or their mixed emotions.  

Some titles available for siblings of different ages:

• Sarah’s Tummy – Jeannine Del Monte Kowal, 2012 – Suitable for young children with Prader-Willi Syndrome 
• Sometimes I’m Mad, Sometimes I’m glad – Sarah Heinemann, as told to Janalee Heinemann, 2005
• See me, hear me, I’m here too – Edited by Lota Mitchell and Nina Roberto, Pub. Prader-Willi Syndrome Association (USA), 2006

Caring for yourself is also essential.  Getting enough rest and finding the time to spend time with your partner can seem impossible, but you both need to discuss your feelings and your plans and just support each other. It is important that you put aside the issues surrounding Prader-Willi Syndrome and get to know your new baby for the special person that they are.  Accept help when it is offered, whether it be time to sleep, help with the housework and meals or just an ear to listen and a shoulder to cry on can go a long way to supporting you in nurturing your precious bundle of joy.