Beyond the Diagnosis Series Resource

Beyond the Diagnosis Series Resource

Beyond the diagnosis of Prader-Willi Syndrome, there is so much more.

As a newly diagnosed parent or caregiver of a child with Prader-Willi Syndrome, it’s completely overwhelming. The amount of information available is confusing and difficult to navigate. However, the PWS beyond the Diagnosis series of information booklets is a resource that grows with your child and contains all the information you need to help you navigate the PWS journey all in one neat package.  

There are currently two sections to this series, Beyond the Diagnosis – Understanding PWS Birth to 3 years and Beyond the Diagnosis – Early Years of Transitions Kindergarten to Grade 5.

Each section contains information that is relevant to the stage of development that the child is experiencing now or in the near future.

Each section, together with the folder is designed to be expanded with additional information as your child grows. All members of the Prader-Willi Syndrome Association of Victoria will be sent each new section as your child approaches the applicable age group and any additional updates made to the information over the course of your child’s journey.

Non-members can purchase this resource below.

Purchase Online

Section 1: Beyond the Diagnosis – Understanding PWS Birth to 3 years

This section of the series focuses on the moments after a diagnosis is presented up until the child turns 3 years of age. This resource helps the family and other caregivers to understand Prader-Willi Syndrome; the medical and behavioural challenges that may present during this time; and most importantly that no two children with Prader-Willi Syndrome are alike and that there is no way to predict as an infant or young child how Prader-Willi Syndrome will present in the future.

Included in this section

This 65-page loose-leaf information pack comes complete with an A5 folder, notes pages, plastic keepsake pocket for any additional information or items you would like to keep safe together with this information series.

  • Important AdvicePrader-Willi Syndrome: A Parents Guide
  • Birth
  • Hospital and taking your new baby home
  • Important infrmation to share with all caregivers
  • Early development
  • NDIS and Early intervention
  • Issue that may arise in the early years
  • Cognitive function
  • Nutrition
  • Exercise
  • Information for your extended family
  • Treatments
  • Transitioning to childcare
  • Resources, Support and Advocacy Services
Purchase Online

Section 2: Beyond the Diagnosis – Early Years of Transitions Kindergarten to Grade 5

Section 2 of the series continues from the previous section and provides information for children aged between 4 to 11 years of age. Focusing on transitioning into kindergarten and Primary school, this part of the information series arms families with the right information to navigate these transitions easily and free of any surprises.

As this is an extension of age-relevant information, most of the basic information regarding Prader-Willi Syndrome, treatments, therapy and information for extended family and other caregivers in the first section, should be read in conjunction with this section.

Included in this section

This 45-page section of the information series is produced in loose-leaf pages and should be added to the A5 folder you received with the first section of the Beyond the Diagnosis series.

  • General Growth and development
  • Self Care
  • Kindergarten
  • Allied Health Services
  • Transitioning to Primary School
  • NDIS
  • Behaviour
  • Exercise and activities
  • Food Seeking and Hyperphagia
  • How to look after a child with PWS
  • Taking care of your family’s mental health
  • Important resources
Purchase Online

Important Resources

Student Information Sheet

Student Information Sheet

Share your child’s strengths and challenges

Teacher Birthday Letter

Teacher Birthday Letter

Inform your child’s teacher how you would like to celebrate your child’s birthday in class