Having a child or adult with PWS usually means that family life is somewhat different to other families, most notably around meal-planning and managing behaviour. However, depending on circumstances, this does not necessarily mean big changes, and introducing positive structures and boundaries can be very helpful.
As the child grows to adulthood, family life usually begins to extend more and more to community life, and interactions with non-family members may need careful management. Additionally, once a child leaves school, there is a strong likelihood of social services involvement, if this has not already been accessed by the family.
The following links are sections from the PWS Journey. Families can obtain a hard copy of the whole PWS Journey, which is updated as their child reaches the next age range, by becoming a member of PWSA UK
Brothers and Sisters
Grandparents Birth to 2 years 2 -5 years 5-10 years
Coming to terms with the diagnosis Birth to 2 years 2-5 years
Caring for yourself and other family members Birth to 2 years 2-5 years 5-10 years 10-13 years 13-18 years
Telling your child about PWS 5 – 10 years 10-13 years
Social life and relationships 13 – 18 years
Further education and options after school 13 – 18 years
Benefits and Services
Click here for information about government benefits, sources of financial help and other useful agencies
The PWS Passport can be used to inform others working with or caring for your son or daughter about their needs - you can adapt it to fit your personal circumstances.
You can download it here
PWSA UK Publications
Our Babies – a booklet with stories from parents of children with PWS sharing their experience of having a diagnosis of PWS - PWSA UK Publication
Let’s Talk about PWS – an interactive workbook for children and adults with PWS explaining in basic language how the syndrome affects them. Explores themes such as diet, exercise, speech, routines and feelings.
Please click here to go to our publications page
Information for teachers
You may find the following links useful to give to your son or daughter’s teacher for educational support staff.
Information for nursery school staff
Information for primary school staff
Information for secondary school staff
Information for college staff
PWS Awareness Card
The PWS Awareness Card is a wallet sized card which can be used in various situations such as restaurants or when out and about to make members of the public aware of the issues that the person with PWS in your family may have.
You can download it here
If you would like a hard copy, please contact us
If you have a question about family life which is not answered in the links provided, please contact us.