Thursday, 28 June 2018

What teachers need to know: PWS in the classroom

by Linda Thornton

It is important that we recognise the learning ability of the child, and meet their individual, special needs as required. 

Students with PWS are very receptive to learning and are keen to please.  In general they have good reading skills, but poor numerical skills and handwriting can be slow to develop.  They show ability to learn computer skills and often have excellent fine motor skills, for instance, many are particularly clever with jig-saw puzzles, threading beads, and many show an aptitude for fine handiwork including needlework and knitting.  The IQ level generally falls in the just-below-normal category, but often shows “islands of
competence”, in other words, they might be equal with their peers in some areas, but need support to reach potential in others.

Throughout integrated primary and secondary education, it is important for the student to have teacher aide time.  Although this is not always available for many students with special needs, it should be applied for on all levels.  The need for teacher aides will not decrease as the student progresses.

Teachers should be as familiar as possible with the characteristics of this syndrome, even including the genetic sub-types, as this will impact on the learning ability of the student and the teaching strategies employed.

Genetic sub-types:  Within the deletion on Chromosome #15 which causes Prader-Willi syndrome come three sub-types:

  1. The most common is the actual Deletion (a deletion on their paternal side)
  2. Secondly comes the Maternal Disomy  (a double copy of the mother's chromosome)
  3. Thirdly is the the mosaic imprinting.
Certain characteristics are now being recognised in each group and a flurry of research has provided us with the information that those with UPD generally have better-developed expressive language (Roof et al., 2,000; Whittington et al 2004), but somewhat poorer visual memory and puzzle-solving skills (Dykens, 2002; Verdine, Troseth, Hodapp, & Dykens, in press). Individuals with UPD may be less apt to skin-pick (Dykens, Cassidy, & King, 1999; Symons et al., 1999

Comparing 12 participants with Deletion and UPD deletions, Butler et al. (2004) found that the Deletion group had lower reading, math, and adaptive behavior scores, and higher externalizing behaviors and severity of compulsions"

Those with the mosaic imprinting tend to have more behaviours similar to those with autism, so if your skills lie with teaching those with autism, many of your practices will be similarly employed with PWS. 

Although you may not be told the deletion type of your student, it will help you to understand why not all students with PWS are the same!

(Further reading scroll to "Differences in Genetic Subtypes")

Relative learning skills:

 Maths teaching needs to be conceptual, practical, and often repeated several times before there is understanding.  Teaching the use of a calculator immediately helps the level of understanding.  Once understanding has occurred, the concepts generally remain.  Like all students, they thrive on praise.
  • Good long-term memory skills
  • Receptive language
  • Good at puzzles
  • Visual processing (relative to auditory processing)
  • Basic maths skills (especially with calculator)
  • Reading skills
  • (Some) good computer skills
  • Social and friendly

Learning weaknesses:
  • Poor short-term memory skills (visual-motor and auditory-visual)
  • Expressive language
  • Poor fine and gross motor skills
  • Sequential processing deficit
  • Difficulty with abstract concepts
  • Short attention span
  • Communication difficulties (may end in temper outburst)

It is important that the behaviours or issues that challenge are identified.  Some will result in having to manage the actual environment with school lunches and all food being kept out of reach, money being held by teachers (for all students ) and some new management skills.


Give positive instructions:
Students with PWS tend to have a fairly rigid or concrete way of thinking, and tend to work best to a set routine and positive timetable.  They can accept change if prepared for it beforehand, but a sudden, unexpected change may result in an uncooperative student.  It is sensible preparation to warn beforehand if something is to be postponed or cancelled.  If the student doesn’t clearly understand the instructions, you may find resistance to change.  Do make sure the student knows that this will not change lunchtime!  A common indicator of this might be persistent or repetitive questioning from the student in spite of having heard the answer.  Be patient, use visual as well as verbal, instructions.

Constant persistent questioning is a common characteristic of the syndrome.  Answer questions up to two times, then write it down if necessary.  Check with the student to see they clearly understand your answer.  Ask them to tell you what they are going to do, or what the answer is; even ask them to write it down for you.  Clear communication is the key here.

Use visual schedules:
The student may have difficulty in finishing a task on time, or may display perseveration (repetitive questioning), a characteristic common to the syndrome.  Perseveration indicates an inability to process information coherently or sequentially.  Not finishing a task on time can incite some obessive compulsive behaviour.  In both cases, using both a verbal reminder, combined with a visual schedule, or prompt, will assist the student.  This may be anything from a simple egg-timer, to a daily pictorial class schedule to help with time-keeping. Children with PWS greatly enjoy achievement charts, no matter what the age.

Always have Plan A and Plan B:
It is sensible to have a fall-back plan in the likelihood that your Plan A does not eventuate.  This will prevent disappointment, frustration and anger, and keep the student in the loop.  Working out probabilities and possibilities beforehand, including extra staffing, is a precaution that is essential.  Occasions will arise when the student refuses to go on an outing, or to participate in a class activity.  Rather than have this spoil the day, Plan B can be brought into play.

Break tasks down into manageable parts:
  • Have no more than two-step directions
  • Have shortened assignments
  • Brief (or no) homework
  • Ask - don't demand
  • Control access to food and money
  • Identify areas of accessibility (to food and money)
All teachers have their own workable strategies - the above is designed to help understand the thinking of the student with PWS.

If you would like further information on strategies to use in the classroom, contact us.

Thursday, 21 June 2018

So, it's time for school...

This as a general guideline for parents of school-age children.  Of course, each country is different, and each culture is different.  You may, however, find some of this helpful.   (Linda Thornton)

Children with PWS are very receptive to learning, they generally have good reading skills, but poor numerical skills and their handwriting is slow to develop.  They show good ability to learn computer skills and often have good fine motor skills (jigsaw puzzles, threading beads etc). Their IQ level generally falls in the just-below-normal level, but often shows "islands of competence".  Maths instruction needs to be conceptual and practical and often repeated many times before there is understanding. Once understanding has occurred however, the concepts generally remain. Like all children they thrive on praise. Teaching the skills of using a calculator, for instance, is often more useful than trying to teach the times-tables.
Primary Schooling
On the whole, children with PWS can manage primary school years well. If the school is able to provide a teacher aide, then your child will cope better within the structure of the classroom.

Secondary School Options
  • Attending a mainstream school:  This is often difficult for any child with any disability and this is where a teacher aide is invaluable.  Check with the school to see whether a teacher aide is possible - and for how many hours a week.  If this works, then great!  If the school is genuinely interested in the welfare and learning of its special needs students, and is keen to learn how best to support your child, then this is a great opportunity.
  • Attending a school with a Special Unit attached:  Go and visit the special unit, spend some time there, see how it works and whether your son or daughter will be well-cared for.  Look at the work units that are being done; see if they are right for your child.  Sometimes the special units will integrate with mainstream students.  Take note of how they deal with this transition (is it a cooking programme with food involved, for example; ask how they will manage this for your son/daughter).
  • Special Residential Schools: Some countries have special residential schools for students with disabilities. If you have this option, go and visit the school; spend some time there, watch how the students interact, take note of how they manage meal times.  Take your son or daughter with you and make sure they feel comfortable with the idea of boarding away from home.

Talking to the school

Parents need to be prepared to talk to their son or daughter's teachers every time they change class.  Teachers need to know how to manage their student, and you need to make sure they understand what this really means.
Each time your child enters a new class, the pupils need to know why your child is different and how they can best support and befriend your son or daughter.  You may choose to take the opportunity of talking to the class yourself.  Personally, I always found that talking to the children meant telling them what they need to know, rather than the full-on description of PWS!  I always likened it to a child who has diabetes and, for their own safety, cannot eat sugary foods and must keep on a safe diet.  I would do this without my daughter being present.  I would also tell the students how important it was for my daughter NOT to be given any of their spare lunch as this would upset her diet.  Plus, I would always make sure the teacher will keep school lunches out of reach - somewhere safe like a locker, or, if that wasn't possible, then the teacher took full responsibility for handing out lunches, including my daughter's (this was to prevent her from eating all her lunch the minute she got to school, and from eating or sneaking food from other lunches).

Positive Instructions

Children with PWS tend to have a rigid way of thinking and tend to work best to a set routine and positive timetable. They can accept change if prepared for it beforehand, but a sudden unexpected change may result in non-cooperation - generally more so with an older child. It is sensible preparation to warn beforehand if something is to be postponed or cancelled and, if possible, what will take its place.


Generally speaking, children with PWS are sociable and interactive with other children, but tend to mix with younger children rather than their peers whose natural physical ability will often leave the child with PWS behind. Some children prefer their own company or adult company and will seek frequently seek out a teacher's company.

With an ordinary classroom setting, children with PWS may have difficulty in settling and can become easily distracted. It is not "naughty" behaviour but part of the syndrome. They may work better with their 'own' desk and chair rather than continually moved around.

Simple behaviour modification techniques

Things like "ignore-redirect-praise" work well; removal from a situation which appears to be heating up and redirection to another task until the person has calmed down.  Basically with the younger person, the behaviours tend to be comparable with any child of his/her age.  These incidents may occur around food, possessions, or anxiety.

Eating behaviours at school

Because of the deletion in chromosome 15 (which governs normal ability to feel full), children with PWS are constantly on the lookout for food.  They may 'take' or steal, swap something for food, or just be opportunistic and take food when the opportunity arises.

Practical intervention from teaching staff will mean that:

  • lunchtime and playtime are supervised so that the child eats only what is prepared for these times (otherwise everything is likely to be eaten at once);
  • care must be taken to see that other children are not passing on unwanted food and that the youngster him/herself is not suggesting they might finish others' lunches for them.
  • Food discarded in rubbish-bins in the classroom will need to be removed so that it does not provide temptation.
  • Lunchboxes need to be placed in view of the teacher so that they also do not provide temptation. They may need to be handed out at each break.
  • Any programme which includes food, or cooking, will need to be supervised.
  • It is a good idea to have a notebook which goes home with the child, noting any change in dietary intake during the day. Accidents do happen!
Generally speaking...

  • Be aware of bullying
  • It doesn't pay to be sarcastic, or even use subtle humour. People with PWS do not respond well to such tactics.  
    It doesn't pay to argue. Make the statement, allow the person one more comment, warn that the discussion is over - and stick to it! You will never win an argument.
  • Don't ignore bad behaviour - try interventions to prevent it.
  • Don't use food as a reward or punishment. This can cause escalating behaviours.
  • Don't promise anything you cannot or will not do. They will not accept any reason for change.
  • Arguing often provokes further escalation in behaviours. Their concrete thinking doesn't lend itself to reasoning.
  • Showing a child what you expect of him/her gets better results than verbally explaining.
  • Keep your sense of humour!
  • If possible, ask for help and support from your local PWS Association or contact us for further help.

    (None of the children depicted has PWS)