Tip of the Week: Road trip guidance

For many parents of children diagnosed with Prader-Willi Syndrome, the road trip –that old family pastime – can be a daunting idea:

What do we do about the food? My child is so dependent on his/her schedule, how could we possibly spend a day or days in the car How do we keep him/her occupied for hours at a time? What if there are behavioral issues and we’re far from our support system?

These are all important questions. However, it is possible not only to survive a road trip with a child with PWS, but to have a great time making family memories that last a lifetime. Here are some ideas that can make this experience enjoyable for the entire family:

Write out the daily menu and stick to it. For example, Abby’s menu for Thursday on the road:

8 am breakfast at the hotel: 1 cup of cereal with 1/2 cup of skim milk, one piece of fruit and veggie sticks

10 am snack in the car: one granola bar

12 pm lunch at a rest stop…

It’s a vacation – an end of the day treat is okay. And a low-calorie treat at the end of the day will also give you some leverage. Don’t threaten to take it away but remind him/her what’s coming.

Establish a vacation routine. It will be different from home but will still be structured and predictable. Write it down or use picture schedules for non- readers.

Let your child pick out activities for the car. The more he/she is involved in the planning, the more successful it will be.

Start slow with day trips and work your way up to the trip that you’ve been dreaming of but have been afraid to try. You get the idea. To ensure that there will be no surprises, check the web for lists of rest stops and what they offer. That way you won’t get stuck having to serve apple slices from one fast food restaurant instead of the promised parfait from another – a change that could ruin a perfectly fine day.

We all know that children with PWS bring those who love them incredible joy and pride every day. Vacations can bring out the best in every member of your family if planned and executed well. Have fun and let us know about your adventures!