Telling your child or young person about PWS

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Telling your child or young person about PWS

Jan 25, 2024

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As with any other child, perhaps the best time to tell your child anything is when they start asking questions, although some children may not do this.

Very young children may not understand much beyond the fact that if they eat too much, they will get fat/unhealthy and will not be able to run around.

As time goes on, gradually introduce more information about PWS at a level your child will understand.

Children

Some parents make the decision not to say anything about PWS, but to treat their child as normally as possible. This does have some benefits, but it is worthwhile bearing in mind that at some point they will have to know, and perhaps it is better to grow up with that knowledge, assimilating it gradually and at a pace which suits their development.

If they learn at a much later stage, it is often all at once and can come as a great shock and seriously upset your child’s life expectations for the future.

Whatever you tell your child, always tell the truth as you know it. It is unfair to raise expectations. At the same time, it is very important to stress all their good points if you are telling them something negative as well.

It is also very important to keep self-esteem high, so always praise them if they do something well, behave well, or do something new.

You may find it helpful to use the workbook, ‘Let’s Talk about PWS’ Let’s talk about PWS 2022 (cdn-website.com) when discussing PWS with your child.

Young people

Telling your child about sex, relationships and how their body develops

Your child will probably learn about sex in all the usual ways: from asking you, seeing programmes on television, from other children and from school. See Growing Up with PWS, below.

Many schools introduce sex education programmes from an early age, but they do inform parents if they are going to do this. It may be helpful to contact the school to let them know about the ways in which people with PWS develop differently on a sexual level and discuss how their lessons can be adjusted accordingly. This may be something as simple as introducing the idea that not everyone can have babies. (Note, though, that worldwide there have been at least 4 reports of women with PWS having babies).

If your child asks about sex, try to give simple, truthful answers. It is important that they gain a balanced view of how they will fit into the adult world. They still need love and cuddles and the opportunity to develop close relationships with other people. You can also try to make them aware of “stranger danger” and what is acceptable behaviour and what is not.

Growing Up with PWS

These videos (animations) explain simply some of the body changes that a person with PWS may, or may not, undergo. They include various aspects of sex and relationships. The videos can be viewed separately as and when appropriate to the age, gender and understanding of the person with PWS. A set of notes for parents and carers accompanies the videos. The topics are:

  • Introduction
  • Growing up and body changes (girls and women)
  • Growing up and body changes (men)
  • Be safe online
  • Menstruation and periods (girls and women)
  • Growing up and feelings
  • Keeping clean and fresh (girls and women)
  • Keeping clean and fresh (men)
  • Saying “No”
  • Different types of relationships
  • Adult relationships and saying “Yes”

You can find Growing Up with PWS videos on the PWSA UK website PWSA UK | Support for those living with Prader-Willi Syndrome

Thank you ….

to PWSA UK for sharing their original source material.

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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.

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