When Johnny was about three or four I took he and Little Brother to a high school production of a musical featuring Disney songs and characters. All the greats were there, Mickey, Minnie, Ariel, Nemo, Simba. I was prepared for a morning of dancing in our seats and little boys with big smiley faces.
THAT is not what happened.
I believe it ended up being my first lesson in “be prepared” for ANYTHING… all the time. Because there was only one smiling face that morning, Little Brother. Johnny, well, it was hard to get a good look at his face due to his screams of terror, his thrashing in his seat and his attempts to escape. So, I chased him up and down much to the audience’s delight and tried to engage him in the show. NOTHING DOING! This was HELL and he wanted out, NOW!
That morning ended with me pacing the first of many lobbies to contain Johnny. Little Brother watched the show in another Mom’s lap. It might have been the first, but it was certainly not the last time this scenario played out.
Johnny was already in a Special Education pre-school class for “developmental delays” but this added to my ever-growing concern that there was more to the story. Outings of any kind were a crap shoot. You never knew which environment he would enjoy and which would cause him to scream bloody murder in a panic like state.
What was going on? Too much! That’s what was going on. Too many people, too dark, too loud, too bright, too much music, too much clapping, too much surround sound.
The scary part, when put in these situations, he would just run, out the door, with no concern of knowing where he was or anyone around him. He just wanted out. So he would run and then find a place to hide. If it was a “familiar” place, I would at least have a peace of mind to know his “go to” places. But unfamiliar places were a nightmare. One minute he was there, the next minute…gone. One time we were at a tailgate party and finally found him hiding in a port a potty. THAT’S how much he hated crowds and noise. Those drinkers waiting in line looovvved him. That’s okay, they weren’t the first or last to give me the you suck as a parent stare.
It seems only logical that knowing this about him, we would keep him away from any and all crowds. Problem is, that’s extremely isolating and I thought would only eventually worsen the problem. But the biggest reason is I wanted so badly for us to be able to do “normal” things as a family, altogether. But ever so slowly I began to accept that this would not be the case. Our reality was different. One parent went on the “outing” and one stayed with Johnny or took him to a “safe” place for him. Which, at the time, involved any place with a train.
As he has gotten older, with different behavior therapy and some better coping skills (for everyone) most outings have gotten easier. He can also be convinced to “tolerate” a place with the promise of a “treat”. For him, this involves pizza or ice cream. He will do most anything for ice cream with chocolate syrup.
But lately I have wondered who it is for. Me or him? And is it “fair” to him to push him into these anxiety fueled situations? Is it helping? Is he really learning to cope any better. Or am I possibly causing him greater anxiety? And is that anxiety almost fear, like “no way out, I have no way out.”
Don’t get me wrong, we do not, on a daily basis, put him in situations we know cause such stress and anxiety. But at times, it is unavoidable. And at times one of us quietly excuses ourselves and remove Johnny from the “too much” of whatever is stressing him out.
I have been thinking about this in relation to things or activities that I greatly dislike and cause some stress and anxiety. For example, last week we were going as a family to watch Big Brother play basketball. On the car ride The Captain was listening to a CD of heavy metal music. I HATE heavy metal music! I thought I was going to come out of my skin! When finally it was turned off I actually said, “Thank God!” I hate that stuff.
And this is only an occasional occurrence for me. Unlike Johnny, whose whole world seems to be stress inducing.
This caused me to reflect on the expectations we put on him. In the interest of what? And for what… Ice cream? Because I got to thinking, I would not EVER take a ride in a car with blaring heavy metal music by choice. And certainly not for the promise of a stinking ice cream.
In the end we do it for him, I believe. For his future, to help him learn to cope with a world that seems to have an unfair advantage over Autism. Maybe the world and autism could meet in the middle…maybe, someday, for Johnny’s sake, and not just for ice cream.