Dear Mum ...

Somehow, a hand-made card beats the bought variety any day of the week.  Every year on my birthday, or Mother's Day, I get one from my daughter.  It's generally the same style with lots of cut-outs and hearts and so on and not much has changed over the many years I've collected them.

They also nearly always say the same thing about how much she loves me and what a great mother I am and my apparent amazing attributes are freely listed.  What this does is put my own life into perspective.  It doesn't matter that most of my friends have 'normal' kids, it doesn't matter that I might have missed out on various outings, or feasts, or had to stay home and deal with stuff that wasn't expected.  It doesn't matter that the word 'dysfunctional' may have been used to describe my family - words, after all, are just words.  What does matter is that my daughter can see past her own disability and see her life as "fantastic".

I don't know what it is with our kids, but they seem to have their own amazing attributes that can often be overlooked in the greater scheme of things.  What I wish, more than anything, is that those people in 'power' who control education, health programmes, or benefits, and who actually control the lives of others, could understand what they are doing to those who can't fight the system for themselves - who rely on their parents and families, or the goodness of caregivers to make their lives as "fantastic" as possible.  Whenever there are cuts in governmental budgets, they filter down to our kids and all the others in the world who rely on benefits or grants in whatever form that may be.  It pains me to think of the struggles that we face as parents, whether fighting for a fair and equitable education system, or battling the health system for a simple piece of equipment needed to improve health, or trying to prove to authorities that medical help is desperately needed - it seems that more and more, we have to fight for the right to life.

On the other hand, when things go right, when systems work and medicines help, then all our lives can be equally 'fantastic'!

International Caregivers Conference

Very soon, in May this year from 7th - 9th, the third International Caregivers Conference will be held in Germany.  This is held in partnership with two residential providers in Germany: Regens-Wagner Absberg, and the Diakonische Stiftung Wittekindshof.

Pam Eisen, opening the first conference in Herne, Germany

This conference is specifically for professional caregivers and attended by countries from around the world.  This was the brainchild of Pam Eisen, IPWSO's past President, and as such has provided the world with the new International Best Practice Guidelines for Residential Care for Prader-Willi Syndrome.  (Copies of this are available here from IPWSO.)    All participants attend workshops of their choice and contribute their own knowledge, ideas, concepts, and country's models of care, which then get translated into draft guidelines.  Each workshop has a facilitator, a scribe, and a translator.  At the end of each day, time is taken to write up all the notes which are tacked up on large boards and presented at the "market place" where everyone gathers to hear what has taken place.  These draft guidelines are then thoroughly discussed and tested by the PPCB before becoming recommended as international best practices.  In effect, they are contributed by each and every caregiver from all corners of the world - what more could you ask for!

Topics included range from the understanding of the syndrome and its characteristics, nutrition, weight, exercise, psychological make-up, psychiatric care, communication, social skills and empathy, what makes  a good residential home run well, the transition into and out from the education system, to, more recently a topic for this year's meeting, how to develop a PWS curricula for staff.


Because these guidelines are something IPWSO wants to be able to endorse internationally, there are, understandably, very different cultures contributing some very different ideas and it is always interesting and exciting to learn how these cultures can be absorbed into our international network of care.  And, not to be forgotten, are families supporting adult children at home.  Their needs are just as great as those in residential homes and must be acknowledged and woven into the whole concept of care.

The 1st and 2nd conferences were held here in Herne, Germany

Care must  be holistic and inclusive.  It needs to acknowledge that home life has a series of transitions to overcome - from home into school, from school into the workforce, and also into the community.   IPWSO and the PPCB strive to support all our families, our residential providers, schools and educationalists, as well as medical professionals throughout the world.

One of the workshops' diagram of "Anatomy of a crisis"

This is not a small task, and the PPCB is completely dedicated to helping provide professional support and help through its combined international knowledge.  This year's conference is in Wildbad Kreuth, about an hour's drive from Munich.  Speakers are from all corners of the world, there are two days of workshops (and 'work' is the operative word!), and the best opportunity professional caregivers will ever have to work with some of the world's experts in this specialised topic.

If you are a professional caregiver and would like to attend the conference, please go here for registration information.   Likewise, if you are a parent and have a son or daughter in residential care and think it would be beneficial for someone to attend the conference, please let them know.

As usual, we have great expectations from this unique gathering, all in the name of Prader-Willi Syndrome!

Onwards and upwards!!