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)
