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.

Sociability

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)