"I don't want to go to school!"

Although going to school for the first time is usually a really happy occasion, as the years pass by, there can be that familiar cry, "I don't want to go to school!"  More often than not, there is an element of bullying going on that makes a child fearful of school.  Katherine Stanley, who has PWS, wrote a book about bullying in schools.  We wrote a blog about that which you can see here 

There are so many issues that our kids with PWS have to deal with at school so it is really important that teachers are able to recognise not just the learning ability of the child (and be able to meet their individual special needs as required), but also the social needs and how to help the child fit in comfortably.

And, having said that, it's not just the classroom teacher who needs to know, but everyone - including the relieving teacher so that they are not caught in the trap that one relief teacher found herself in.  She was just relieving for one day and she asked for a volunteer to collect the class lunches - you are all already ahead of me and yes, you are correct -  the child with PWS shot up their hand and willingly volunteered.  The school lunches only made it as far as the nearest toilet block and all were consumed.  

It is so easy to exclude the child with PWS from outings, camps, and other out-of-school activities for this very reason - that they 'can't be trusted'.  Or, 'there isn't enough staff to cover a one-on-one situation'.  It is a sensitive situation.  Do you agree with the teacher and keep your child home for the day, or do you postpone what you were going to do so that you can accompany your child?  Or do you insist that the school gives as much attention and care to your child as they would to any other child who needed special help?  It's a tough call and I have kept my child home from school on quite a few occasions in the past to avoid unnecessary confrontational situations.  I have to say that we both enjoyed our days out together and probably had more fun.

Quoting from what is written on our website, "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.

"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.

"Throughout integrated primary and secondary education, it is important for the student to have teacher aide time if this is available at their school.  Although 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 subtypes, as this will impact on the learning ability of the student and the teaching strategies employed."

This may require some dedicated education on your part to make sure the school really does understand PWS, and may even need you to talk to the classroom to explain why your son or daughter needs the students' understanding and support.  I remember doing this (with my child absent) by telling them a story about a child with diabetes and how although this child looked just the same as anyone else, they had an illness that could kill them if they weren't looked after properly.  Now that growth hormone treatment is much more readily available, children with PWS who benefit from GHT will definitely look just like any other child and it's this that makes it even more important for everyone to understand what it means to have PWS. 

But, they can learn and they can succeed and they can often astound you in their success.  With the right support at school, at home, and from their peer group, school can be a happy and convivial place of learning.

Of course, there may well be many things that go unsolved at school.  Like who really took Sally's school lunch money, and who was it who cut the computer cords, or took someone's prized possession, or carved f*** you into the headmaster's table...

Some things just remain urban myths, don't they?

 

Education and PWS

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.