Fly High; redefine ‘normal’

April 2005

This stay-at-home mom has once again been flying high.

My son and I recently participated in another research study for Fragile X (FX) syndrome at the Waisman Center in Madison, Wisconsin.

We departed on a Sunday in the middle of a February snowstorm. It’s one of those experiences when you ask yourself  “What was I thinking? Traveling in February, in Michigan?” We left home late knowing our flight was delayed only to arrive at the airport to find the flight was delayed again. What a fine start for a trip with a child with anxiety problems. 

Austin did well waiting because he could see that the plane wasn't there at the end of the gate. Once the plane arrived the Austin pace began (three steps, two spins - always to the left).  Luckily, we were able to board first on a very full flight.

The next true challenge was soon to begin; after taxing to the runway, we sat for two hours, waiting to be de-iced. Austin managed well but occasionally expressed verbally what every other person on that plane was probably thinking. Mom kept his anxiety in check by keeping her anxiety in check.  He is very intuitive; I call it his sixth sense.

With all the waiting we spent on the plane I figured he'd had his fill for the day so once we  got there we caught a cab to the hotel along with another rider on this snowy Wisconsin day. When we arrived at the hotel, I was barely out of the cab and Austin was already in the hotel lobby. Just as I was passing through the entrance doors, he was in the elevator with the doors closing. I bolted and quickly pressed the button. For a moment, I wondered where I would find him next. After about 10 seconds (which felt like an eternity), the doors opened and there was Austin.

Austin has an extraordinary memory that can sometimes be an advantage but at others a disadvantage. He remembered that during our last visit in May we were on the second floor. The kind gentleman behind the desk offered to give us the same room again if we could remember the number. I couldn't so I told him thanks but it didn't matter. 

During dinner all the anxiety caught up with Austin. He started gagging so we ran to the nearest  restroom.  Not a typical dinner out but mom understood how difficult it was for Austin to keep his anxiety in check. I knew how hard he was working to keep it together.  

On Monday, we were extremely busy. When I wasn’t working separately on my part of the study, I was entertained by watching Austin perform his various study tasks from the observation room.

On Tuesday, we were running well ahead of schedule but with a new challenge. Austin had a blood draw scheduled. I did all that I could to prepare him. He seemed willing to comply after mom told him this might help others with FX.

This is an unusual study because they will compare biological factors to determine if they can identify anything that makes a difference or correlates in a FX child's communication ability.

As part of the standard procedure before drawing blood, the research team read from a script to Austin that ended with “if you don’t want to do it, you don’t have to”.  Yet, he once again surprised me. Austin and his entourage (mom and two staff members) left the building for the lab. He was a professional only saying “ouch” once while they filled three tubes with blood.

We finished before lunch and decided to gamble by trying to catch an earlier flight home. Once again, my motherly inner voice was saying, “What are you nuts? Standby with an FX’er”.  FX’ers typically struggle with change or transitions, so I knew I was taking a chance but it was something that I thought I could handle.

For our return flight, we were randomly flagged for an additional security check. At least I'd like to think it was random and not that we look as if we pose a threat to national security. I coached Austin through what to do, place your feet on the footprints on the floor and stretch our arms out like airplanes. In the end, I counted it as another opportunity to introduce a couple more people to a child with fragile X and autism.

We managed to get on the earlier flight and the trip home was as smooth as silk.

Our feet are physically back on the ground and there is no place like home.  Now that I’ve had the opportunity to reflect on what we’ve accomplished, I’m still in awe by our success. 

If you had asked me five years ago if I would be traveling, by plane, alone with my son, I would’ve thought you were insane. Yet, during the last five years we’ve redefined our “normal”. It took time for us to realize that our “old normal” wasn’t working because we weren’t living life to it’s fullest, and it wasn’t productive, for any of us.

Moving on, embracing a “new normal” has made numerous things possible. I wonder how many opportunities would’ve been missed without the change.

How is your normal working for you? I wonder what are you missing?