"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?

 

The difficulties of advocating - School Years

How do you decide what school to send your child to?  How do you decide what to tell the teachers and how much to tell your child's classmates?  What is important here and is the school going to listen to you, "just another parent"?

These are all questions that are important from the day you decide to send you child to pre-school to the last day of your child's education.  They are questions that need asking every time your child changes teachers, moves classrooms, or goes to another school, and by the time these school years have finished, you will be more prepared than most to advocate for any future needs you may ever dream of!

Deciding on the right school

What should you be looking for?  What's important to your child?  To you?  As a parent, you need to be as familiar with the syndrome as any professional.  You need to have a list of the things that are most important to you, and your son or daughter.  You need to prioritise these and be clear when you question the school that they understand why you are asking and why their answers are important.

You also need to be able to answer questions carefully and easily (as you are bound to be asked plenty), you need to be impartial and hold your own emotions or prejudices in check, and explain what PWS is, how it affects your child and why you may consider some things critically important, even life-threatening.   If you don't feel comfortable about telling the teachers what they should do, take along booklets, brochures, or information from the internet to back up and give credence to your explanations.

The school may say it understands, that it has a full programme for special needs students, but may say it couldn't possibly lock up all the school lunches, or provide someone to be with your child during lunch hour.  On the other hand, you may find a school that is happy to provide someone to accompany your child and supervise him, or her, but only for an hour a day.

Is it possible for you, in the early days of primary school, to offer help in the classroom? How much time are you willing to give to the school yourself?  Are you willing to be on their Board of Directors, a school committee, a fundraising committee?  (This often works in your favour when it comes to the school's willingness to understand your child's needs.)  Are you willing to talk to other parents about PWS and why your son or daughter can't go to their child's birthday party unless you come too? 

What about bullying in schools?

What policies does the school have around bullying and how do they put these into place?  What is their complaints procedure and how can you access this?  Bullying takes all sorts of forms, not just name-calling, pushing or shoving.  You may find your child is isolated, does not keep friends easily, but is easily led by promises of food or drink and will do 'anything' for this reward.  This is also bullying and needs to be brought to the school's attention.  Your child may feel bullied by the teachers, "You can't do this until you finish that..." and display anxiety, even hostility towards that teacher.  You may find yourself taking your child's side, only to have the teacher say the opposite happened.  What is the best way to reach a compromise here?  Will your child always be the scapegoat for things that go missing, food that gets taken, or money stolen?

How will the school understand about PWS behaviours?

Often teachers have very large classes and no time to put into the specialised understanding of how a child with PWS behaves.  They may expect conformity from all their pupils and not see how this might lead to a confrontation.  How will you know if your child's teachers "get it" and understand that there are certain buttons that, if pushed, will accelerate your child's anxiety, resulting in a behavioural outburst.

How can you possibly be the one to "train" the teachers?

It seems unfair and unjustified that you have to be the one to 'train' the teachers, but in many cases, this is what will happen.  Become familiar with good teaching strategies and work out ways you can suggest improvements (for example, if a school or teacher is unwilling to lock away all lunches, find a way that the lunches can be distributed by the teacher, or kept within view). Attend all meetings to do with your child, even if you don't want to hear the 'bad bits'.  Suggest ways that teachers can alleviate your child's anxieties; ways that they can recognise the triggers that end in outbursts; keep all lines of communication open.  If you still feel you can't quite manage to be the advocate you would like to be, take along another person who understands the difficulties and who can back you up.


School years are often the hardest years with constant change, growing up, teenage years, and so on, but they are also some of the most rewarding.  Kids with PWS are very willing to please, like to learn, feel proud of mastering a new skill, and love the whole idea of school balls, outings, socialising, and graduating, just like everyone else.  The school years give them the grounding they need for the rest of their lives.  They also give you, the parent, the grounding you will need too, for the rest of your life!  Become the best advocate for your child that you can - it will pay off in the long run.

 (If you would like further information in booklet form, please contact us:  information@ipwso.org)