Behavior

At this age, many children begin to notice differences between themselves, their abilities and independence. Poor social skills can make it hard to interact with friends without being bossy. Other children tend to begin having smaller and closer friend circles, and our children can find it hard to fit in.

For children with PWS, their emotional control can be impaired, and this will continue into adulthood. You will learn skills in de-escalating outbursts and will soon begin to recognise the difference between a tantrum and a meltdown. 

Many of the behaviours you have started seeing in your younger child will continue and may increase. A lot of the behavioural issues experience by individuals with PWS are triggered by anxiety or frustration.

Over time you will learn to recognise the triggers for your child and learn how to best head off escalating emotions. However, sometimes a meltdown will seem to come out of nowhere, either a trigger was overlooked, unavoidable or unknown.

Many of the Challenging behaviours associated with Prader-Willi Syndrome are anxiety-related, therefore if you can reduce or eliminate the cause of the anxiety, you’ll reduce or eliminate the unwanted behaviour. Clear, concise and consistent communication is essential for management of PWS. It is necessary to communicate any changes of routine to the person with PWS as soon as possible. This will avoid any disappointment, which could lead to anxiety or unwanted behaviour.

Areas that can cause difficulty with regards to behavior can include: 

• Challenges transitioning from one task to another. If you want your child to stop playing to have dinner, a few minutes notice that you will want them to stop soon can help. 
• Although children with PWS often show great empathy, playing with others and/or reading social cues can be difficult. This can be said for many children in this age group. 
• Difficulty seeing or understanding consequences if not responding appropriately. Check that your child knows what you are asking, and the end result you expect before a consequence. 
• Break requests down into steps. 
• Inability to de-escalate. 

Managing physical food security and by ensuring that a routine is in place so that there is no doubt about meals being provided at the agreed times is a first step in easing anxiety.