New Video "Parental Stress When Your Child has a Developmental Disorder"

A collaboration of the PWS Association (USA), the Angelman Syndrome Foundation Inc, and the International Rett Syndrome Foundation as a genetic partnership, has developed a videotape of Dr Paige Powell's presentation on "Parental Stress when your Child has a Developmental Disorder: Helpful TIps and Coping Strategies.  The link to this is:

http://www.bioedonline.org//workshops/evening-genetics.cfm

Any family with a child whose behaviour is challenging, will find this video of coping stragegies and helpful tips, extremely useful.  So often we forget how important it is as the primary caregiver to look after ourselves first.

Further information on Rett Syndrome & Angelman Syndrome can be found through these links:

Rett Syndrome:

http://www.rettsyndrome.org/

Angelman Syndrome

http://www.angelman.org/

Greetings from Cuba!

Hola, and greetings to everyone from Cuba where we have just held our first family group meeting!

Over the past years we have struggled to get information about Prader-Willi Syndrome, and it wasn't until I was able to attend the PWS International Meeting earlier this year in Taipei, that the idea of starting our own Cuban Family Group  become a reality.  It was so exciting in Taipei to be with other professionals  who all had such a great interest in understanding the syndrome and to meet so many parents who also had children with PWS.  Just knowing you are not alone in the world is heart-warming.  Learning that there is so much research being carried out by scientists, and hearing about the management programs for care-givers and parents, is so important.

So, together with strong support from IPWSO, we started to work on having our very first PWS meeting in Cuba.  We were aiming for September, which was only four months after the Taipei conference.  We did not aim to have a great number of people, just the few parents along with doctors, and psychologists.  On September 22 - 24th, we met for the first time!  It was a great experience, sharing with other families.  We concentrated on the topics of food, behavior and the management of PWS. This was such an important meeting for us because it was our first step.  We called the meeting "Day by Day", so that we can concentrate on the best steps forward for our families in Cuba.

We would like to say thank you to Caritas Ciego de Avila, the PWSA of USA, and the Association Madrilena S. Prader-Willi, for their unconditional help.

Loisel Bello, MD

Out of the mouths...

There are times when the phrase “out of the mouths of babes and sucklings” comes often to mind when working and living with those with PWS.  They have a disconcerting way of telling you how they see things, and presenting a wisdom that is way beyond their years.  It is so fascinating to hear some of the things they say, and to recognise them as a truth.  More often than not, it is not what we would have said ourselves, and quite often it is not what we particularly wish to hear, but they all seem to have this knack of getting under our skin – no matter what language they talk!

The young girl who sat with her dying grandfather, holding his hand, not wishing to be moved from his bedside, seemed to know what to do without saying it.  Many of us cannot do this.  My own daughter who put her most favourite soft toy into my mother’s coffin, along with a small posy of lavender. 

There is the young boy who at four years old, was overhead by his mother saying to the wide-open fridge, “I’m thirsty.  What can I have?  I can’t have that, and I can’t have this, but I can have iced tea.  I will go and ask Mummy”, and, closing the door, he went to find her.

The young 6 year old who, on coming home one day found that locks had been put on the pantry and cupboards.  Her older sisters had stormed on by with words like “How can you possibly do this to us – how can we ever invite friends home?”, but she simply said “What bright, shiny locks.  Did you put those on, Mum?  You are clever!” Of course, her thinking was that her food was now safe and her sisters wouldn’t be eating it all!

The other day I was told of an engagement card sent by the younger sibling with PWS to her older sister and her fiancé.  Inside were the words, “I hope you will always be happy.  I hope you will respect each other.  I hope you never break each others’ hearts.”

Sometimes you just have to slow down to hear what is important in their world, to take time and listen.