Educational Workshops and Guidelines for Teachers

In June 2008, the First International PWS Caregivers Conerence was held in Germany, in conjunction with the International PWS Organisation, to develop guidelines and standards for anyone, or any practice involved in the care of those with Prader-Willi Syndrome.

From these guidelines, and from our own unique New Zealand perceptive, the PWS Association has built up workshops for learning, discussion, and appraisal. These are available on request and can be run in your area, or at your school. Please contact the Association for further details and other scholastic resource material: email ceo@pws.org.nz

Workshops will discuss the medical and physical overview of PWS, the unique behaviours and how they might be presented in the classroom, the learning profile, practical strategies, management around food, educational setting, and transition planning.

Prader-Willi syndrome is a low incidence disorder; as such it is unlikely that a teacher, even one trained to work with children with special needs, will encounter a student with the syndrome in their career. Given limited school funds and the demands of more common disability groups, training in working with students with PWS is generally not a priority.
Subsequently, few targeted resources exist and there is little emphasis on teacher training. Families of children with PWS find it quite disheartening to see their children enter a school system that is ill-prepared to teach them. These families find themselves in the role of primary resource for all matters concerning their child's disability and his/her special needs. Moreover they find that, given the uniqueness of the syndrome, especially the behavioral challenges, their input is often questioned or even discarded in lieu of more traditional teaching and behavioral strategies which are often ineffective.

There is a need for families and teachers to have a shared knowledge and understanding of PWS so that effective communication and collaboration on behalf of the student can develop. It was the mission of this workgroup to establish content guidelines for the development of a "Best Practices" manual for educators.

Learning Profile

Relative learning strengths:

  • Good long-term memory skills
  • Receptive language
  • Good at puzzles
  • Basic maths skills
  • Bisual processing
  • Reading skills
  • Social and friendly
  • Average IQ=70 (mild-range of inellectual disability)

Learning Weaknesses:

  • Expressive language
  • Poor gross motor skills (including balancing skills)
  • Sometimes poor fine motor skills
  • Sequential processsing deficit
  • Difficulty with abstract concepts
  • Poor short-term memory

Learning and social gaps tend to widen during ages 8-10. The shift from concrete to abstract learning generally finds the student with PWS falling behind in most academic areas. Socially, typical classmates are maturing and becoming increasingly involved in more sophisticated peer relationships and activities. Appearances and peer approval become paramount, leaving the student with PWS at a disadvantage in establishing friendships.

Some Practical Tips:

  • Visual schedules
  • Verbal reminders
  • Have Plan A... and Plan B
  • Once things are set in motion, it is difficult to be flexible
  • No more than two-step directions
  • Shortened assignments or homework
  • Controlled access to food and money
  • Anser questions up to two times, then write down the answer if necessary
  • Ask - don't demand
  • Extra travel and set-up time
  • Keep tissues and adhesive bandages on hand
  • Provide opportunities for student to work alone or in pairs
  • Social skills programmes
  • Provide opportunities for physical activity
  • Empower all who are involved with the student to be an authority
  • Communicate and write down consequences of food-stealing (or any stealing)
  • Minimise discussion when student is upset
  • Use a mirror to recognise and express emotions (where appropriate)
  • Use social stories to teach life skills
  • Use flash cards and/or picture symbols to communicate wants, needs and transitions
  • Reciprocal communication between home and school when changes occur
  • Always remember - Mum rules!

Anxiety

Anxiety is the key concept to understanding the student with PWS. Many of the challenging behaviours displayed by these students are anxiety-related.

Typical anxiety-producing situations include:

  • Transition times
  • Who do they go to for what
  • Not sure what is comng next
  • Changes in food menu or times
  • Perceived unfairness from other students or adults
  • Teasing/Bullying
  • Unclear communications or instructions

Therefore, it is important to do the following:

  • Post a time-table for the student
  • Give a warning when a transition is about to occur
  • Make clear who is to address their particular needs
  • Communicate changes in food presentation, food-related activities, or meal/snack times
  • Communicate PWS needs to other classmates as appropriate

Both primary and secondary education programmes should be designed not only to expand and enhance academic skills, but expose the student to a variety of realistic vocational options with a focus on successful work habits and behaviours.

At a young age, children may not be obese and parents may not have to use strict environmental controls. However, once the student reaches adolescence, food-seeking behaviours and anxiety around food become more prevalent. This must be taken into consideration in determining vocational placement options as the student with PWS may require more intense supports in certain situations.