Transition to adulthood

What is a good life for persons

with PWS?
Ragnhild Øverland Arnesen
The Norwegian PWS Association
October 2010
What is life quality for a
person with PWS?

 We want our children to be happy

 What is a good life for a person with PWS?
 The big problem: Food – controls their
behaviour and life
 Can we make their life ”normal”?
 Challenging task for parents
Parents need knowledge

Educating parents – how?

 The resource centre Frambu – with a broad
spectre of specialists who have this special
knowledge (your local doctor hasn’t)
 Frambu has learnt us what we know about
PWS – courses, seminars, personal follow
up, visits etc
 Courses and advices to health staff, teachers
etc
The resource centre is our
”guide”
 What parents learn:
 How to respect your child as it is
 How to cope with the syndrom
 How to handle the food problem
 How to handle the motoric problems
 How to handle the learning problems
 How to plan for the future
 How to try to give the child a ”normal” life
 Parents’ important role
Experiences…

 Parents come together – discover that you’re

not alone!
 Feeling closely related to each other…
 Children meeting others with PWS
 Sharing knowledge and experiences
The parents’ power
 Knowledge is power – use it!
 -to influence and educate all personel around
your child – make them learn more
 -to influence and educate family, neighbours,
friends, the grocery shop etc

 Influence the attitudes

 – be open about the disorder – it helps your child
Transitions
 From child to adult
 From school to job or to daycare centre
 From home to another place to live?
 From parents’ care to – an independent
life?
Hunting for food
 Most of them will always try to find food or
money
 Control the eating – how?
 Strict control at home and everywhere else
 Make clear, understandable agreements
 Lock up the refrigerator or kitchen door
 Check the weight every day (or weekly)
 Never money or credit card
 Never visit the grocery or snack bar alone
Food is stress
 Take the stress away
 To be fixated on food destroys life quality
 Let them be sure that there’s no food to find
 They can relax
 Rule nr. 1 – food control
From school to a job?
 After high school (in Norway):
 Adapted work or daycare centre
 Help from the social security office to find a
place to work
 Are good employees – working hard!
Into the adult world
 Prepare the transition to a job:
 Restrictions required – food and money
 Agreements:
 Not to go out or in the wardrobe alone -
 Not into the cafeteria without permission -
 What to eat and when -
 Parents have to educate the staff - how to
solve problems/avoid trouble
Spare time
 Prepare for adulthood:
 Teach your child positive activities:
 puzzle(!), reading/listening to literature, x-words,
handcraft, music, concerts, film –
 Exercise - every day:
 Walking, jogging, swimming, ergometer biking,
training in a fitness centre etc
 Good for body and mind!
 - for the rest of the life!
An independent life (N)
 People with disabilities have a right to live an
independent life
 In Norway regulated by law
 The municipality should provide help -
 to live in their own flat or in a group home,
 to go to a job,
 to take part, be included in the society
 Not a life time job for the parents
Group homes
 A part of the welfare in Norway
 Must apply for an appartment in a group
home – (have to wait)
 Most often 5 to10 appartments
 Individual - kitchen, living room, bedroom and
bathroom
 Permanent staff, also at night
 Pays a rent - disability benefit
Service in group homes
 In a municipal group home the residents are
provided service as needed:
 Food/diet
 Personal hygiene
 Exercise
 Medicine
 Household
 Going to dentist, doctor, physiotherapist etc
 Help with economy
 Social contact
Living in a group home
 Prepare the transition:
 Planning, cooperate with the parents
 Agree on the rules for the PWS person
 Mutual agreements, signed by all parts
 Planning and predictability
 Food restrictions
 Exercise as a part of the daily plan
 Group homes for PWS - recommended
A regulated, independent life
 With well prepared rules, regulations and
agreements - the PWS person will feel safe
 Codetermination is important
 – means selfdetermination – accept the rules
 Mutual confidence
 By breach of confidence – new agreements
 Never blame the PWS person
An example – Siri, 32
 Lives in a group home – 5 appartments (not
PWS)
 Permanent staff – special trained group for her
 Goes to work every day – half day
 Physical activities
 Never money or credit card – never goes alone
 Mutual agreements
 Lots of spare time activities!
Personal freedom
 She has got her own home
 Holidays or vacations together
 -also on ”her own” vacation, with the staff
 Individual plan - codetermination
 Planning her menu, but never buys food
 Refrigerator locked up
 Regulations makes her feel safe – good
behaviour
How to keep the rules
 A special ”manual” for Siri
 Describes everything - rules, the mutual
agreements
 All caregivers have to read and know the
”Siri-book”
 - if not, she can complain
- A better life…
 Good food control
 Exercising twice a day:
 Walking, training in a fitness centre, swimming,
ergometer bike, weights and interval exercising
 Growth hormones and CPAP machine
 Results:
 - 40 kilos
 Discovered the positive effect of exercising
A good life!-
 A happy, well functioning young lady
 Doing a good job, making herself useful
 Safety and control every day
 Good structure on life
 Caregivers who care, and know PWS
 Help to control weight and food
 Knows for sure that her mother will always be
there for her
 I’ve got a good life, mummy!
Development in Norway

 Development during the last 10-15 years:

 Earlier diagnosis
 PWS persons receive growth hormones
 PWS persons under 20 are not overweight
 Professionals and parents know a lot more
 Longer life expectancy and brighter future than 20
years ago