Magazine article The Exceptional Parent

Careful Planning and a Positive Attitude

Magazine article The Exceptional Parent

Careful Planning and a Positive Attitude

Article excerpt

My husband and I have never been able to agree on the perfect vacation. His ideal vacation is spent sitting quietly in a fishing boat on the Mississippi River. I, on the other hand, love to travel to distant and exciting places. Beginning when all four of our children were young, I began travelling with them by myself.

We took our first major vacation 10 years ago, traveling by train from Iowa to Disney World in Orlando, Florida. Sarah was two years old, Faith was four, Will was eight, and Kevin, who has Down syndrome, was 12.

The day before we left, Sarah was diagnosed as having failure to thrive with swallowing dysfunction." We were advised to schedule surgery for a gastrostomy tube as soon as possible. To me, "as soon as possible" meant after our trip. For now, my mission would be to fatten Sarah up while having fun!

I quickly learned that Amtrak was not as accessible as I had been told. Only one car was wheelchair accessible. Because of this, I had to carry Sarah to the dining car, there were definite advantages to her being underweight!

Kevin wandered off several times, but you can only wander so far on a train. The porters became extremely protective of us--a sort of extended family for the duration of the trip.

I wanted to show the children our nation's capitol during a two-hour layover in Washington, D.C. The Amtrak staff was determined to keep passengers from leaving the train, so we sneaked off. We hailed a cab and told the driver we had $20 and one hour to see the town. We managed to see many of the sites and still get back to Union Station in plenty of time to reboard.

We had a wonderful week at Disney World. I occasionally left Sarah with a caregiver referred to us through the local Arc chapter. Kevin challenged us daily with his behavior, but I only lost him once--on our last day at the park. However, we all managed to find each other in time to return safely home.

Return to Disney World

Eight years later, we returned to Disney World; this time we drove. By then, Sarah had many more diagnoses including recurrent pancreatitus, seizures, osteogenesis imperfecta, reactive airway disease and gastrointestmal problems.

Our previous vacations had taught me the value of planning ahead. First, I had to think about Sarah's equipment--feeding pump, formula, bags, syringes for flushing the tube, an extra tube, diapers, underpads, suction machine and oxygen. I worked with our equipment company, Miller Medical in Coralville, Iowa. They gave me a list of other medical equipment suppliers in case we had a problem during our drive or stay in Orlando. …

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