"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?

 

"A Book of Bullies"

My name is Katherine Stanley and I have PWS. Last year, I wrote a book called A BOOK OF BULLIES. Some of you may have heard of my book, or even read it. I wrote the book because I was bullied and ridiculed in school. Was I bullied because I have PWS and I am different from my peers? Yes, I think that was part of it, but I saw many other people without disabilities being bullied and some with disabilities who were not bullied. I learned many things from my bad experiences and I wanted to share what I had learned. I also wanted to turn those bad experiences into something good, so I wrote the book. Writing the book and having it published has also taught me many things, and I want to share those things with you now.

I began thinking about writing a book to talk about the hurt and harm of bullying when I was in middle school at about 12 years old. I wanted to tell people that it is not OK to act like that and I also wanted to encourage people to be kinder to each other. Whenever I would mention that I wanted to write a book, I could tell that people did not think that I would be able to do it. I thought about that book and practiced my writing skills for years. Finally, when I was 16 years old I began writing it. 

I had discovered in my 10^th grade English class that I enjoyed writing in rhyme, so I started writing rhymes about bullies and the next thing I knew, I had the book written. Even though most people did not have any confidence in my ability, my family did. My parents and my sister read my rhymes and encouraged me. My sister drew illustrations for each poem. My mom helped by finding a local children’s book author to advise me. We were invited to a fund raiser for Grateful Steps Publishing, and when I met Micki Cabaniss, the head of that company, I told her I was an aspiring author and I recited excerpts from the book for her. Since I had spent so much time writing and re-writing that book, I knew it by heart and it was easy to recite. There were other authors there talking about their work, and when I was asked if I would like to speak about my book, I said “YES!”  That was the first time I did any public speaking, and I loved it! I was given an appointment to meet at the publishers office, and in less than a year my book was in print. I was officially a published author and that made me very happy and proud of myself.

 

Katherine's book is available from AMAZON

This has been a wonderful experience for me and I have learned so much. One thing that I have learned that I want to share with everyone is BELIEVE IN YOURSELF. As I said before, not many people thought I would be able to write a good book and get it published. If I had believed those people, I would not have even tried to write a book.  Another thing that I have learned is the POWER OF BEING PROUD OF WHO YOU ARE. When you find what you love to do, and do your very best, it makes you proud. When you overcome obstacles it also makes you proud. Those of us with PWS have many obstacles to overcome – sometimes we will succeed and sometimes we will fail – but we should never give up. When you are proud of yourself, nothing a bully says can make you feel worthless. If you are the family of someone with PWS please give your loved one the benefit of the doubt before you decide that they can’t do something. Help them, encourage them and believe in them. I have needed a great deal of help with the business side of this book. I like to write, but I am not good at business yet, but I am learning. My mom always told me that I was smart. She always said that I had beautiful thoughts, and I believed her. She convinced me that I had something to say that people need to hear. My family encouraged me and helped me to have self control and self esteem. I am writing other books that I hope to have published in the future. I am also writing song lyrics. All of my books and songs will have a positive message. I intend to use my voice in every way I can to make the world a better place.

Life is not easy for a person with PWS. We have food issues, emotional issues and limitations – but we also have a purpose in this world. All my life I will have to struggle with the difficulties that my genetics have caused me, but I am just the way GOD made me, and I love my life.