People with Prader-Willi Syndrome are friendly, social, empathetic eager to please and if adequately supported, students with Prader-Willi Syndrome can thrive in the school environment. They usually have a passion for learning and enjoy responsibility.
Nearly all children with Prader-Willi Syndrome can attend mainstream primary schools with support. Some students can proceed to mainstream secondary schools, but as peer gaps widen, sometimes enrolment at a secondary school that caters specifically for special needs may be a better option.
Students with Prader-Willi Syndrome require some level of support throughout all stages of their educational journey. In early childhood education, and Education Support Worker (ESW) is needed, and an Early Intervention Teacher will apply for this support before a pupil starts school. During the school years, Teacher Aide support is essential, with additional support required while transitioning.
Food Seeking behaviour
People with Prader-Willi Syndrome follow a strict diet from a very early age. This is driven by those who care for them and is usually supported by a dietician or nutritionist.
To understand the importance of this hunger drive, try to look at Prader-Willi Syndrome as a ‘starvation’ syndrome rather than an over-eating one. Because of the dysfunction in the hypothalamus, there is no on/off mechanism that tells the brain, “I’ve eaten enough”. What happens instead is that the brain keeps telling the stomach, “you’re starving, you need food”, and the drive to find food overrides everything else.The International Prader-Willi Syndrome Organisation
Unfortunately, food seeking behaviour is very challenging for those with Prader-Willi Syndrome and their carers. Firstly, what we need to remember is their drive doesn’t come from a natural hunger, but something more consistent with a need to survive.
Typically, our recommendation, and that of Prader-Willi Syndrome professionals around the world, is that Food Security is essential at all times, in all settings. In a school setting, we recommend that children’s lunch boxes are kept in a separate room (locked) and are handed to students at mealtimes, much the same as what would happen on a school excursion. To have the food unsecured (in the same room) only makes the person with Prader-Willi Syndrome anxious that the food is there, and the anxiety will escalate into a behavioural outburst.
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.
To assist with best outcomes in an Education Setting
To ensure the best outcomes in an education setting, we suggest the best start is to begin by implementing the following strategies. Once someone with Prader-Willi Syndrome can put their anxiety aside, there is an underlying drive to want to please you.
- Food security is essential, and this is not something that can be ignored.
- Clear, concise and consistent communication of routine and strategies for communicating changes of routines are absolutely essential.
- Someone with Prader-Willi Syndrome whose mind is kept busy on a task, is not focusing on food or their hunger,
- Visual learning aids can be of great assistance.
- Abstract concepts can be difficult for someone with Prader-Willi Syndrome to understand, therefore use concrete examples and systematic approaches/methods with steps.
- People with Prader-Willi Syndrome have a processing delay and often get stuck in the moment and need prompting to move onto the next task or idea.
- Allow extra processing time, use clear and unambiguous language, avoid lengthy instructions and check understanding.
- Due to poor auditory processing and memory, allow extra processing time, use clear and unambiguous language, avoid lengthy instructions and check understanding.
- Poor working memory – avoid multi-tasking and assist with taking notes as some people with Prader-Willi Syndrome exhibit auditory and visual processing difficulties.
- People with Prader-Willi Syndrome have good long term, but poor short-term memory therefore use repetition.
- When someone with Prader-Willi Syndrome is stuck in the moment and exhibiting a behaviour that is not acceptable, distraction often helps,
- Allow extra time for communicating and to practise new words. Verbal ability may be good, but people with Prader-Willi Syndrome can have difficulty articulating.
- Due to impaired executive functioning, we strongly recommend the use of visual schedules, checklists. Always break tasks into smaller steps, minimise distraction and plan ahead. Always prepare for changes in task/activity
- People with Prader-Willi Syndrome exhibit Low muscle tone and motor difficulties/dyspraxia. It is advisable to use assistive technology, allow for fatigue, consider sensorimotor issues and plan for the development of gross motor skills.
- All people with Prader-Willi Syndrome will require ongoing support to help develop appropriate social skills, i.e. conflict resolution, maintaining friendships and cooperating with others. It is essential to provide support in group activities and facilitate social connection. People with Prader-Willi Syndrome are sociable but have poor social skills
It is important to remember that Prader-Willi Syndrome is All About Anxiety
“Persons with Prader-Willi Syndrome typically feel high levels of anxiety – all the time.
Maladaptive, unwanted behaviours often attempt to reduce the level of anxiety the individual with Prader-Willi Syndrome is feeling.
High anxiety puts them in the fight or flight zone
Examples of this behaviour are repeated questions, excessive talking, and controlling, oppositional, argumentative or aggressive behaviour. Running away or hiding are also other examples of behaviour resultant from heightened anxiety levels.
Your attitude is important
The attitudes of others that surround and care for people with Prader-Willi Syndrome is very important.
- Never argue with a student who has Prader-Willi Syndrome as this will only create further angst and escalate into a behaviour. People with Prader-Willi Syndrome are unable to control their emotions.
- Always exhibit a firm but loving and caring demeanour towards someone with Prader-Willi Syndrome.
- If you notice someone with Prader-Willi Syndrome begin to show signs of an emotional outburst or behaviour, it is best to use the TI “Tactically Ignore” strategy. Let it go if it is not important, or respond once, let it go and ignore it.
- Use humour but ALWAYS ensure you are laughing with the person with Prader-Willi Syndrome, NEVER at them.
- People with Prader-Willi Syndrome are eager to please, so where possible, praise positive behaviour, this will help build a wonderful relationship.
- NEVER take a behavioural outburst personally. We understand that when someone has wronged you in some way, anger is a natural reaction. It is important to realise that people with Prader-Willi Syndrome, while unable to regulate their emotions are unable to identify personally how that have wronged you in that moment. You may notice that someone with Prader-Willi Syndrome may exhibit an emotional outburst and half an hour later, it as though it never happened.
We recommend that anyone who cares for someone with Prader-Willi Syndrome read through as much information within this website as possible, to ensure a thorough understanding of the requirements for safety and adequate support.
Prader-Willi Syndrome Association of Vic On-site Training and Education
The Prader-Willi Syndrome Association of Victoria Inc. (PWSA Victoria) is a volunteer led ACNC registered Australian Charity committed to working with educators of people with Prader-Willi Syndrome. We can work with you and any support persons required to help create an environment in which students with Prader-Willi Syndrome can thrive and be a very productive and valued part of the education program.
During the consultation process, we work closely with you to understand your requirements and develop a training session tailored to your needs. We offer several training modules including, but not limited to:
- Understanding Prader-Willi Syndrome
- Dietary Management and Prader-Willi Syndrome
- Health and Wellbeing
- Understanding and Managing Behaviour
For a consultation, please contact the Prader-Willi Syndrome Association of Victoria on 0451 797 284 or email us on firstname.lastname@example.org
The Key Components for success with a child with Prader-Willi Syndrome in a school setting developed by The Prader-Willi Syndrome Association (USA)
Teaching Students with Prader-Willi Syndrome (below video) facilitated by Kate de Josselin, a former teacher and parent of a son with Prader-Willi Syndrome