TIP of the WEEK: Traveling PWS Style

Traveling with typical children can be a challenge but traveling with kids with PWS brings another level of organization and worry. From meal planning to ensuring meds like growth hormone remain cold throughout your trip, traveling PWS style is no easy feat! Here are some ways to make the trip a little easier:

• Contact your pharmacy or pharmaceutical company to get a cold pack designed specifically for GH injections. These packs keep the med cold for 24 hours. If your flight or travel is expected to be very long you can ask the airlines ahead of time to refrigerate your med pouch during the flight. Most airlines will allow this. If traveling by car bring a cooler designed for long term use.
• Get all of the info regarding meals ahead of time. If your travels bring you to a PWS conference then this part is relatively easy because any conference with a children's program will have this done for you ahead of time. If not get menus off the internet to be sure they are up to date.
• Plan snacks, preferably non-perishable ones and have them already portioned out.
• Allow your child to be a part of the trip planning. Have something they would like to do at the end of each day to make the not so fun stuff more tolerable for them.
• Use social stories to help prepare for unexpected changes. "Sometimes flights get delayed and we will have to sleep somewhere else/ eat a different meal than we planned for/not see grandma for another day and this is ok, this is not something we can control". A story along those lines can really help your child prepare to be flexible but the stories need to be read ahead of time and not in the moment.
• Remember to keep your affect and emotions under control. If you are upset, your child will be that much more upset. Stay calm and remind yourself that this is different and everything cannot be perfect or exactly as you planned.
• If your child is going through a challenging time or if the trip will have few chances for leisure such as a funeral or other family event that will be stressful, find a way to leave your child home. It is ok. The best parenting decisions are those that put your child's needs first and ignore what others may think. Family may not understand your choices but your priority is what is best for your child.

Submitted by:
Patrice Carroll
Manager PWS Services

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“Make voyages. Attempt them. There's nothing else.”

 ~Tennessee Williams

Latham Centers Tip of the Week: THE ROAD TRIP!

A lot of parents with children diagnosed with PWS avoid that old family pastime- the road trip. Yes, the idea can be daunting:

• What do we do about the food?

• My child is so dependent on his/her schedule--we couldn't 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 things to consider and none of these should be taken lightly. 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:

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

10am snack in the car- one granola bar

                        12pm lunch at a rest stop...

You get the idea. To ensure that there will be no surprises check the web for lists of rest stops and what they offer. Every state lists the rest stops along each major highway and what services 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 we all know could ruin a perfectly fine day!

• It's a vacation- an end of the day treat is ok. 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.

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!

Submitted by:

Patrice Carroll

Manager of PWS Services 

"Everything in life is somewhere else, and you get there in a car."  

~E.B. White