"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?