Try not to resort to Plan C

 July 2006

 One of the most challenging roles I have as a parent of child with a disability, in our case Fragile X Syndrome and autism, is the necessity to prepare my son, Austin, for events that enable the whole family to participate.

To survive, and thrive as a family, I’ve learned to focus on not forgetting who we were before the diagnosis. I try not to let the disability and diagnosis define what our family does or does not do together.

As a result, I often operate with two plans in place, Plan A and Plan B.

Because of anxiety it’s difficult for Austin to go to new places. Once we’re there I need to help him transition from one event to another. His need for routine is the one thing I struggle with the most because there are times where I’d love to be spontaneous.

Father’s day was a good example of “Plan A and B.” We had a family reunion in Canadawith my husband’s very large family. His family’s get togethers are never small, quiet events.

Plan A is very simple -- we go, we eat, we visit and we play. Plan A will define who we will see, when we will leave and return.

Plan B provided emergency intervention and recognized that Austin might have difficulties coping with the new situation.

It involved dividing the family for the journey, traveling in two vehicles, having an quick exit in place, an emergency backpack filled with things that may occupy and or calm him.

Father’s day began a little bumpy; it was at a park we’d never been to before. If it would have been closer, Plan A might have included a couple of trips to the park before the event. After spending an hour in the van getting there, he struggled with entering an unfamiliar environment. We weren’there five minutes and I almost had to move to Plan B.

Instead, we took a break away from everyone and allowed a little more time to adjust to the new place, away from the noise and the people. Thankfully, he got back on track and eventually re-joined the party.  

Later in the day, he even participated in his first baseball game with his cousins. He started as a spectator and eventually joined in the fun. Poor muscle tone and hand/eye coordination don’t work to his advantage when doing anything physical. And he is very literal which can further complicate things, when you tell him to run to first base he does exactly that -- he runs only to first base and stays there.

When at bat he was given ample opportunity to hit the ball on his own and then accepted help after swinging and missing several times. With assistance, he hit the ball, the look on his face was priceless.

As family in the stands shouted “Run, Austin, Run” he awkwardly shuffled his way towards the base.

We yelled as if he was going for a record, but – as in life -- we were taking it one base at a time.  On one trip, he stopped in the middle of going to base to say “Hi Mom!” Every time he crossed home plate he was greeted with high-fives, then quickly grabbing a bat and patiently waiting in line for his next turn at the plate.

Father’s day reminded me how important Plan A and B are because the alternative is not very appealing.  

The alternative, Plan C, would define who we are by the disability and diagnosis first, not the family.

There are days when Plan C almost looks inviting but the toll it would place on the family would be devastating. We’d stay home and never try anything new, feeling trapped because of the disability.

Many times in life we may all operate with a Plan A and B.

No matter what your challenges may be I’m hoping you’re not letting the alternative, Plan C, dictate the course of your life