What if?

The first time H wanted to wait for bus by himself I decided we would allow him that freedom. As a parent to a son with special needs all situations need to be evaluated. What made this a little easier for me was that the bus picked him up at the end of our driveway and there were bushes nearby to conceal me as I watched to see if he would be successful. We played a game called “what if” and he said he would never walk into the street until the bus stopped, he would only get on his bus number, and he would never talk to a stranger. But would he actually DO all of that? We chose a day. H walked to the end of the driveway. Within five minutes, a car pulls up, rolls down the window and hollers, “Hey buddy” and H immediately runs over to the open car window. I thought wow, our first attempt at independence and he is going to be kidnapped. My heart raced as I jumped out from behind the bushes just as the car drove away. When I asked H why he talked to the driver, he said “That’s Mrs. S, my para!"

 

The game called “what if” is all too familiar with parents of children living with special needs. It’s a mind game that begins with an everyday situation followed a list of nightmares and safety concerns. The indefinite number of alternative scenarios and situations create uncertainty and anxiety as a parent wonders how the child will react, what decisions they will make in a new situation, what is going through their heads at any one place and time, how will others react, what if an unexpected emergency happened, what if? The What If game often brings to mind situations that are highly unlikely but even the slimmest of odds it means it could happen and creates anxiety.

 

Sometimes H just goes ahead and makes surprise decisions. One evening we were watching his brother’s baseball game and H sent a text saying the house didn’t have power. That was something I had not talked about with H. I asked if it had power now. He text back “yes and I set all of the clocks”. H has never set back clocks. I returned to a house full of crazy times but they were no longer blinking which was the problem in his head.

 

When common situations take a turn for the worse, major anxiety expands the What If game. One afternoon we rented a pontoon. The winds began picking up more than we anticipated and soon water was splashing over the side of the pontoon. It started to feel like the opening scene to Gilligan’s Island. What if the weather continued increasing? H was wearing a life jacket but in an emergency, his anxiety level could make trying to help him very difficult.  Luckily we made it back to shore.

 

H hates hearing babies and toddlers cry or scream. It can turn a quick errand to a local store into a potential nightmare of hollering and swearing. And it extends to restaurants, airplanes and public events. Babies and toddlers are everywhere. When was the last time you flew without a baby or young child crying during take off or descent? When I am out with H just the sight of an infant car seat can cause my blood pressure to rise and anxiety to set in. It even happens when he is not with me.

 

As H continues to gain independence skills, the What If game becomes more complex. Recently, H and his friend B began sitting through movies by themselves. B’s Mom and I walk them through the ticket window, assist with ordering food and help them get situated in the theatre. Then we leave them until the movie is over and they need a ride home. I get there long before the movie ends just in case but there is a window of time when they are independent. Recently, B’s Mom and I were talking after getting them into the theatre to see a new movie. She mentioned that the last time B went to a move with her PCA, the lights began flickering on and off. Her PCA went out of the theater room to discover that the entire movie theater had to evacuate. She was able to steer B out of the movie theater to a designated place across the parking lot. There was no reentry and movie patrons were told to leave. She asked “what if they were here by themselves when an evacuation was necessary, do either even have a phone with them?.” They do not. Looking at the group of high school workers, I realize they may not even think to look for these two or help them in any way. Could H and B find someone capable and interested in helping? Could they communicate that they needed help,  directions, a call to a parent cell phone? Would the young staff take time to listen long enough to provide help? I wouldn’t bet on it. Maybe we stay in the lobby next time. 

 

It sounds paralyzing but we still continue to have adventures. The What If game can be played anytime, day or night. Here are examples. Feel free to play along.

• What if we get to the restaurant and they are out of his usual order?

• What if a baby or toddler begins crying or screaming? It makes public places difficult and    flying impossible.

• What if there is an emergency at the theater or disability event or anywhere for that matter? Would anyone help him? Would they even look for him?

• What if he is approached while out in the community, using a public bathroom (yes I stand     right outside the door listening and stare down anyone entering, yes suddenly everyone looks suspect),

• What if he isn’t properly escorted to and from the work van when there is snow and ice? (yes, one time resulted in a major leg break)

• What if we are driving and there is an accident, or we are stranded?

• What if there is no bathroom nearby? (H has kidney issues although being a boy does open a few more options outside)

• What if there is an active shooter at school, at work, in a public place? H used to play hide and seek by covering only his head.

• What if