I have written 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. 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. With the help of a teacher aide they
will cope within the structure of the classroom.
Secondary School Options
- Mainstreaming with a teacher aide - some children with PWS
manage this sytem quite well. It is advisable to check the system used
at your local high school to see whether this will suit your
son/daughter.
- Attending a school with a Special Unit attached - again, check out
your local college to see whether this option suits your son/daughter.
- Special Residential Schools: Some countries have special residential
schools for students with disabilities. Make enquiries to see if these
might be right for your son or daughter.
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. 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 would 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).
Postive 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.
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 management techniques
such as "ignore-redirect-praise" work well. Removal from a situation
which appears to be heating up and redirect to another task until the
person has calmed down, is another workable method. But, basically with
the younger person, the behaviours tend to be comparable with any child
of his/her age.
It is a good idea to tell classmates (when the child is not in the
class) a little about PWS and how they could cope with any problems.
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.
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 youngester 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.
- Manual Training which includes 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...
- 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.
- It doesn't pay to be sarcastic, or even use subtle humour. People with PWS often do not respond well to such tactics.
- 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 abstract reasoning.
- Showing a child what you expect of him/her gets better results than verbally explaining.
- Keep your sense of humour!
- Ask for help and support from your local PWS Association.
