06/05/2026
PWS AND GETTING ‘STUCK’
People with PWS often experience anxiety, meltdowns or even just get ‘stuck’ in their heads. When this happens, it’s hard to know what to do, as they can be so overwhelmed by something they just retreat into themselves and it’s almost as though they can’t hear you.
They may also release the anxiety by skin picking or tearing apart anything they can get their hands on (like paper or a book or magazine) into tiny little pieces. Once they start, it’s very difficult for them to stop.
Many parents and carers use strategies such as trying to distract them, or move their focus with games, by changing the conversation, asking an unrelated question to change the topic, telling them some news you think they might be happy to hear, etc
Even though it can be super frustrating, the thing that’s most important is to be gentle and loving in your tone of voice so they know they are in a safe space.
If you are a parent or carer of a person with PWS please share your distraction strategies here to help others.
Join us throughout the month of May, and especially on Friday 15th May right here on this page where we will see all around the world Go Orange for PWS!
For more information: pwsavic.org.au
