Sometimes I think that when Robert Burns wrote about the best laid plans of mice and men, and the pain of disappointment, he could have been describing my family. I have a teenage son with severe autism. When plans go awry, there is grief and pain in our household. And when summer plans go awry, there can be thunderous temper tantrums.
Nat goes to a year-round school, but one recent week I took him out of school for three days because his social group was offering a special event: three fun-filled day trips. Nat was so excited he talked about nothing else. In his charming way, he chattered: "No school. Social group. Red Sox. Go to Canobie Lake Park."
Canobie Lake Park, an amusement park nearby in New Hampshire, was the first outing. The second day's trip was to a place called Chunky's that features miniature golf, movies and arcade activities. Fenway Park and Duck Tours around Boston rounded out day three.
As happy as I was for Nat, I was in knots about the week. Because of his autism, Nat craves consistency and structure. Routine can be our lifeline. And these trips were nothing if not different from his usual routine.
The night before the first day of social group camp, I woke up at 4 a.m. thinking, "Public bathrooms! He can't use urinals! And he never closes the door!"
In my panic, my mind kept going: "He wanders from the group! He might get lost! He hates roller coasters but maybe can't say that! Last time he went on one, he had a pinching, stomping fit!" And on and on.
I could not get back to sleep. I took my pillow downstairs and tried the couch, and the next thing I knew I was awakened by an excited Nat walking around, talking to himself about his upcoming day. "You are up way too early," I muttered, peering through sleep-filled eyelids.
Thankfully, the light of day brought clarity and reason; my worry level receded to a much more bearable fretful anxiety. I calmed myself further by taking constructive action: I would make him an ID card for his pocket. I would tell the counselors about his bathroom issues. I would warn them about the roller coasters.
I drew up a Nat cheat-sheet for the counselors and then made us breakfast.
When we arrived at the drop-off location, they told us the plan had changed. The trip to Canobie Lake was postponed for a day because of rain. I anticipated an uproar.
"Uh, Natty," I ventured timidly, "you're going to do Chunky's today and Canobie tomorrow, because of the rain."
The rest of the conversation went something like this:
Nat, who has never mastered pronouns: "You go to Canobie Lake today."
Me: "Canobie Lake tomorrow. It's going to rain today. You'd get wet there. You will go to Chunky's today."
Nat: "Canobie Lake."
Me: "No, Nat, we had to change the plan, because of the rain. It won't rain tomorrow."
(I didn't know how I would make that happen.)
After a few more go-rounds, Nat settled into the van, but he was sucking his thumb rather than smiling and chatting to himself. This was a bad sign. I drove away feeling worried.
But there were no phone calls. Amazingly, all went well. I marveled at how you can never predict these things; at least I can't. Or maybe I just think I can't because of past experiences that somehow never fade, even after years. I prepare everyone in whatever way I can for the worst possible outcome. I make schedules, I hand out cellphone numbers, I repeat instructions. I become a pest, a ridiculous, worried mother. But I do what I feel I have to do.
The next day was Canobie Lake. There was no rain, thank goodness. I told the counselors that Nat didn't like roller coasters but probably wouldn't say so, so it was best not to let him ride. They smiled at me. "Sure! No problem," one said.
I went home and tore myself to pieces thinking about everything that could go wrong. It was one of my worst days yet. I didn't know what to expect when I went to pick up my son.
At 4:30 p.m., Nat burst smiling from the van. He looked like a ball of fire in his orange camp T-shirt.
"Guess who went on every ride?" The counselors grinned at me, the overly worried mother.
When Nat got into the car, I asked, "Nat! What did you do at Canobie Lake?"
Nat looked me right in the eye and said, "You went on the roller coaster."
I sighed, and smiled. Yes, we certainly did.
Susan Senator is the author of "Making Peace With Autism." She lives in Massachusetts.
