Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Sunday, August 3, 2014

No Vacation from Prader Willi Syndrome

Vacation is a time for rest, relaxation and fun, a time to slow down and enjoy life. For our family it's about spending time with Mother Nature.

The Flume
Franconia Notch State Park, New Hampshire, July 2014

But when you are a family with a child diagnosed with Prader Willi Syndrome, trying to "relax" can present some stressful challenges.

Food-seeking behavior is the most defining aspects of PWS. When Nicholas is sick or anxious, this aspect of his disorder can become more pronounced.

During vacation, Nicholas becomes anxious. Mostly as a result of food ambiguity. There is a loss of our typical mealtime routine. The rigid food schedule, we employ during the year, is a high fence we use to enable Nicholas to feel more relaxed about eating. He knows when food is coming and what to expect. Removing this food structure and strict mealtime schedule can cause Nicholas to feel anxious. During vacation it is not unusual to hear him ask,

"When are we going to eat?"

"Did you remember to bring my snacks Mom?"

"Can we eat our lunch here?"

Wherever we go on our vacation, we must always prepare for the questions about food.

To avoid unexpected tantrums, no matter where we are in the world, we must remember to bring along snacks, to distribute during his usual snack time. Most importantly, we must always be sure to communicate to Nicholas exactly when and where his next meal is coming. If we do go out to eat, we try to order the more healthy food options for Nicholas. This is not always easy when others are indulging in high fat choices.

If we do indulge, we try to give Nicholas a smaller portion

Also during vacation, there is a loss of our typical at-home food security protocol. Family members adopt a more laissez-faire attitude regarding Nick's whereabouts, creating a dangerous scenario where there is no food security and no one watching Nicholas, almost guaranteeing the potential for a life-threatening consequence.

For us, vacation is a time for added vigilance and thoughtful preparation.

When I first learned about PWS, I worried about what we would do during summer vacation. I am not aware of any hotels, inns or rental properties, in the entire world, that offer lockable fridges or secured pantries. There are no luxury resorts available with closeted kitchens. In fact, often it is just the opposite, where vacation properties offer open-concept dining and living areas.

But there is one thing about living with PWS....as a family you learn to adapt.

We find ways of making it work.

We persevere.

Here's what we did this week:

 
We rented a home with a double-door fridge.
We attached our own heavy-duty bicycle lock before bed each night

 
We placed all our food in one pantry
Using this heavy bench and stools,
we blocked access to the pantry at night.
For some children diagnosed with PWS,
 this set up would be easily removed
So far, for Nicholas, it works.
 
At night, the kitchen was off limits to all of us. No extra snacking or nighttime raids on the refrigerator. No typical vacation over-indulging.
 
In a way, it is what's best for all of us.
 
Whatever Nick needs, we learn to roll with it.
 
We accept it.
 
Nick experiences other vacation anxieties, so we also try to incorporate his typical waking and sleeping routine. A rested and refreshed Nicholas is always a more flexible vacationer, a boy willing to experience new things.......??
 
 
Or maybe not....but more on that later