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)

PWS School Issues

A New PWSA (USA) e-letter

all about PWS School issues

At PWSA (USA), we are dedicated to helping parents enhance their special education advocacy skills.   We also strive to encourage productive and healthy collaboration between parents and schools to benefit students with PWS.  To help in this effort we’ve created a brand new bi-monthly e-letter called School Times which will focus solely on school issues for the PWS community.  Features include:

• Guest expert columns on behavior management and more
•  News about upcoming trainings and webinars       
•  Reviews of resources you can use
•  Tips to help parents enhance their advocacy skills
•  Reports and Insights from Wyatt Special Education Advocates
•  And more!

This is the first publication to focus solely on school issues for the PWS community in the United States.  It is a great resource for parents and school professionals.  So don’t miss out!  Sign up today by e-mailing Evan Farrar, PWSA (USA) Family Support Counselor.

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.

February at IPWSO

February has been busy, as usual.  We have had several requests for help and been able to send information and network with other professionals in a bid to help our families across the world.

A 26 yr old woman with PWS living in Kuwait who has had little or no support throughout her life.  At this time we don’t have educational material in Arabic, so we contacted one of our consultants in the States who is now following this case and supporting the medical professionals.  We had a similar case in Sudan which has brought up the same problems of having no educational material in Arabic available yet.

We sent information to a doctor in New Delhi about bariatric surgery in PWS, and supported another enquiry from India with a free diagnosis at BIRD for a 20 year old patient with a clinical diagnosis of PWS.  Our professional delegates in Lithuania and also Guatemala requested instructions on sending blood samples to our lab in Italy for a suspect case of PWS. 

In Malaysia, we were delighted to learn of the first gathering of PWS families in Kuala Lumpur on 19^th February.  This coincided with a new contact from Malaysia needing help and we were able to put them in contact with our professional delegate, and the new family gathering.  They were delighted and relieved as the only information they’d been able to receive was in Singapore, which meant the financial cost to the family was quite high.  

We had a request for information for medical references from an English family living in Dubai, butthis is another area where we are in the early stages of trying to build professional networks.  We sent her our packages of information.  Other educational and support information was sent to Porto Rico where they are keen to establish a parent support group in her country, and educational information was sent to the PWS Association in Colombia.

Our parent delegate in Spain put us the following question: ”We have problems here in Spain because some doctors do not allow GH therapy on several children with PWS that are only 11-14 years old. What is happening in the rest of Europe or the world? Do you know?”  His request was sent out to most of our member who immediately replied to him.

On Leap Day, February 29th, BIRD organised a wonderful event in a beautiful theatre in Vicenza (Italy) to celebrate the International Rare Diseases Day.  Over 1,000 students and their teachers from local high schools participated.  Giorgio gave a short talk about his experience as a parent, then sang "Ich Auch" (listen here) at the end, with great success!
 

Finally, we are indebted to our wonderful supporters who have lit candles to help IPWSO continue its work across the world – we thank you so much for your graciousness and generosity.  You can check on the candles by going to our Light A Candle for IPWSO page.

 

One of IPWSO's three information packages:  General Awareness, Medical Awareness, and Crisis Intervention

Invoices for membership fees 2012 have been sent out, and the following member countries are now subscribed for this year:

• Australia
• Finland
• France
• Germany
• New Zealand
• Norway
• Slovakia
• USA