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.

Thursday, June 28, 2012

The Time Traveler

"I understand you're going to Cape Elizabeth this weekend," says Mrs. Botman the recess aide at the elementary school.

"Did Nicholas tell you that?" I ask.

"Why yes," she replies "and he is very excited."

I smile and thank Mrs. Botman for her good wishes.

Cape Elizabeth is a lovely vacation spot on the east coast of Maine. Three years ago, we rented a house there for summer vacation.

We are not however, going there this weekend.

Nicholas loves to travel. His wanderlust is an unusual hobby for a child diagnosed with Prader Willi Syndrome. Typically, our children thrive in a very structured environment. They need routines and schedules to help minimize the stress of change. Unscheduled surprises and long trips can cause great anxiety for some children diagnosed with PWS.

Not so, for Nicholas.

If it were up to Nick, he would spend the entire year traveling around the world, provided of course that our accommodations include a gas fireplace and a garage.

This makes planning vacations a little tricky since I need to be sure to book a place that has at least one of the above-mentioned amenities.

Like many special needs families, our lifestyle is a hectic one. It is loaded with therapies, doctor appointments, hospital stays and meetings. In an effort to periodically diffuse our family stress level, I try to plan a couple getaways a year, depending upon our finances.

We have traveled to places like New Hampshire, Cape Cod and coastal Maine. Nicholas fondly remembers them all. He can remember every excruciating detail, of every property, we have ever rented. In fact, he has created his own special names for each of these properties. In New Hampshire, it was "the green house." Our visit to Cape Cod was in the "vanilla house" and the Maine property was dubbed by my travel-loving tot as "Cape Lizbet".

Nicholas will ask me every day if we can visit one of these homes.

Since he asks me so frequently, my standard stock answer has become.....

"Soon! We will visit very soon!"

Unfortunately, the word "soon" to Nicholas is meaningless. It is an abstract concept that he does not understand. So, he uses his own positive attitude and a little wishful thinking to interpret the word "soon" to mean.....this very weekend.

So, in his conversations with students and staff, Nick explains how we are "going to the vanilla house!" When folks ask him when? He answers....."We're going on Friday." I am certain that it is this combination of his wishful thinking and a distorted understanding of time that confuses dear Nick.

I, on the other hand, have become very accustomed to folks telling me to have a good vacation.

At first, I would painstakingly take the time to explain to the confused individual that our next vacation was not scheduled until summer and how sometimes Nicholas gets confused about the concept of time. But after daily greetings and salutations that usually begin with...

"Hey Mrs. Peters, I understand you are going to the vanilla house soon?"

I found my convoluted reply to be somewhat futile.

Day after day, a different person would come up to wish me "Bon Voyage". Finally, I decided that there must be a better way to handle all this?

After much creative thinking, I decided to stop correcting these poor misguided souls. I decided it was time to change my need to "correct" and "be precise". Instead of stressing about the silly situation, perhaps it was time to relax and have a little fun with it?

I now try to enjoy this humorous scenario. I try to anticipate just who the next unsuspecting victim will be?  And when they approach to wish me a safe and happy holiday,

I simply smile to myself and say,


Posted at Hopeful Parents today (click icon to visit)