Caring for yourself and other family members

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Caring for yourself and other family members

Jan 25, 2024

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Families with special needs children

When a new child comes into any family there is much to celebrate!! When that child has additional needs, it often takes a long time for everyone to come to terms with the new situation. Some members of the family may take longer than others.

While it is probably best to carry on as normally as possible, there are inevitably ways in which different family members have to compromise. But if you can get together to discuss the situation, you will probably find a solution. It is important to realise that you do, or will, have challenges to face and, if possible, to look realistically to the future.

It is equally important to maintain a balanced outlook: try to focus on the many small positives and achievements, rather than always seeing the negative side of things. On the other hand, pretending that nothing is wrong or has changed may be unproductive.

You and your family

You already know that other children in the family are just as ‘special’ as your child with PWS. They need to feel that they are getting your attention just as much as your disabled family member. A partner is equally special. Try to make time for other family members’ enjoyment and activities. Accept offers from relatives to look after your child living with PWS while the rest of the family, or you and your partner, do something together.

Everybody needs ‘me-time’, especially those with special needs children. So always find time to do the things you enjoy most.

Please remember you are not alone!

Although PWS is rare, we are in touch with hundreds of families in Australia who have a child or adult with PWS. We know how much they appreciate being able to have contact with other families to share experiences or ask questions. We have several ways to help you do this.

  • Attend one of our in-person or online family events. If you are PWSA member, you’ll be notified about them in advance. Become a member via the website.
  • Call our PWSA office on 1800 pws aus (1800 797 287) and speak to one of our friendly and knowledgeable support team.
  • Email social@pws.org.au
  • Training – perhaps a service provider or educator would benefit from learning more about PWS and your family member. Contact us to learn about the PWSA training service.

Support from other organisations

  • NDIS: Your child might be eligible to join the National Disability Insurance Scheme (NDIS). You can purchase ‘reasonable and necessary’ supports for your child to live an ‘ordinary life’. Purchase NDIS funded activities for your child like support at swimming lessons, community outings or early intervention services. See ‘PWS and the NDIS’ page on the PWSA website for details.
  • Local special needs play groups: A wealth of support and information from other parents, even if their child does not have PWS.
  • Siblings’ clubs
  • The Association for Children with a Disability
  • Children and Young People with Disability.
  • Services Australia has a Carer Allowance which a parent may be eligible for.
  • Carers Australia offer various supports for parent and sibling carers.

Thank you ….

to PWSA UK for sharing the original source material used in formulating this resource.

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us