Be realistic. It doesn't matter if all of the other families that you know have the next three years mapped out in 15 minute increments (trust me, they don't). You know your family and what makes sense for them. If your routine is written down and includes what every family member is doing every day, great. If your schedule only includes what your child with PWS is doing roughly everyday, that's fine too. It is what works for you, not what other people tell you works.
Make a "to do" list. Write down what really needs to happen that day or that week and prioritize it. Having a mental list is overwhelming and you will only feel defeated when you ultimately forget half of the list. You need food for meals, bills need to be paid and it is always good to have an idea of where every family member is at any given time. After that most things can move to a lesser priority. Check off when you complete each task on your list so you can see what you have accomplished. We spend so much time running from one thing to the next we often don't stop and acknowledge what we have done.
Don't over estimate your energy level. You have a lot to do every single day. If you over-stretch you will not be your best self and that isn't good for anyone.
If your routine fails, don't give up. Tweak your routine until you get it right. This may take a number of tries but you will find something that works.
Most importantly, take time for yourself. This is so very important and the benefits are long lasting.
Create a routine that works for you and your family and change it as needed. A well organized and pre-planned schedule will help the whole family stay on track. Don't forget to delegate tasks to older kids to give yourself a break. You've done a lot for your family, let them start to help you.
Take deep breathes and try to find the humor in every day. There's plenty of it!
Manager of PWS Services
Getting Out of My Own Way
Useful Tips for Managing Stress and Anxiety
"Success is the sum of small efforts, repeated day in and day out."