Stepping Out, Incorporated. Emphasizing Healthy Lifestyles. © 2005-2010 All Rights Reserved.
Environmental Control of Food Sources
Residence kitchens are locked
Work and school environments are monitored and all persons dealing
with child or adult educated and informed about danger of free food source.
Money is kept in a lock box or a bank with check book in lock box.
There is 24 hour supervision in regards to phone use, stealing of food or money or
gaining access to food in some way detrimental to health (e.g. trading personal goods
or favors for food).
Food is carefully prepared to provide maximum nutrition at a minimum amount of
calories. A nutritionist is consulted when developing menus.
(See Weight Management Programs)
Look for opportunities for the person with PWS to
participate in dancing, volleyball, bowling, field
hockey, hiking, swimming.
Active recreation does not replace the fitness
Persons with PWS are very competitive. This can
be a bonus and motivating.
Exercise is essential because it allows the person to
eat more without gaining weight.
(See Preferred Food Rewards)
Make a drink sweetened with crystal light available
after exercise as part of the routine (hydration is
Use a few pieces of candy as a reward for the hard
work of exercise.
Use the OCD present in PWS to the personís
advantage. 30 minutes of exercise at 4 P.M. every
day can become as much of a compulsion as pacing
the floor waiting for dinner. If the PWS person gets
obsessive about exercise it is to his/her advantage.
Exercise should be balanced and fun. Aerobic
exercise at a high intensity provides the most
benefit in regards to burning calories. Strength
training is also important and should be included in
the program. Strength training is especially good
for raising self-esteem.
Reduction of Food Related Stress
Keep food prep and food prep smells out of range of
person with PWS.
Provide three meals and three snacks at exact times
Never make an individual with the syndrome wait
for a meal or snack as a convenience to you.
If extra food treat is promised, never break that
Arrange schedule so that the time before meals is
busy (pre-breakfast must get dressed, pre-dinner
must have house chores done or exercise
Hobbies and Crafts
The busier any person is the happier they are. Find
activities that the person may like to develop for
instance, puzzles, games, rug hooking, pottery,
raising fish, etc.Nurture the personís interests.
Work with the Families
Families should be provided all information
available on the complexities of the syndrome and
given every chance to participate in the personís
If families are part of the team, the program has a
better chance of working.
School staff and even school mates must be made
fully aware of PWS.
Careful intellectual assessment should be done by
a psychologist who is familiar with PWS.
Be an advocate for the personís finding the right
job. Donít leave it up to others to do this. For
persons with PWS some work sites are not
appropriate. MRCI has many work opportunities
for residents at Stepping Out.
This criteria is essential:
a) must be kept busy
b) must feel that the job is worthwhile (need lots
c) primary staff must be sure work-site staff is
fully educated about PWS
d) frequent visits to the work-place are important
f) NO FREE FOOD SOURCE
Structure and Consistency
Charts recording progress in every area
(exercise, weight loss, behavior)
should be displayed prominently.
Rewards should immediately follow pre-determined
increments of progress.
Schedules should be displayed and followed
Rules, procedures and programs should be written,
displayed and discussed on a regular basis.