A Fight to the Finish

I’ve written in the past about how much it means to me when someone “gets” Aaron.  You know what I mean.  It’s when a person out somewhere in a public setting reacts to Aaron in a way that makes me know they totally understand him.  Or at least partially understand him.  I don’t know that even Gary and I on some days totally “get” Aaron.  This past Friday night was an example of both. 

Aaron and I went to Subway to get our special Friday supper, as per Aaron’s request.  One of the girls who began with our order was very nice, but I could tell that she was nervous with Aaron.  She was unsure of what to say to him, and very unsure of what he was saying to her as he robustly placed his order. 

“Can I have a sub?” he bellowed, with me standing close by patting his arm in an effort to soften his tone. 

“And can I have extra cheese?” he continued bellowing.  “My Mom says I can’t have extra cheese!” he rambled on as she was just saying that he COULD have extra cheese, and so she glanced nervously at me. 

I told her to go ahead with the cheese, which caused Aaron to bend over and rub his hands together as he laughed in delight…..which caused her to attempt an uncertain smile as she placed the extra cheese on the meat, all under Aaron’s watchful eye.  I wanted to tell her that it was OK….that Aaron was loud but harmless…..but I didn’t do that with Aaron standing right there.  I just hoped my smile would convey to her what I was thinking.

Just then, the manager appeared and began helping with our order.  I remembered her and she remembered Aaron.  This girl’s mother worked with special needs and so she grew up around other Aarons.  Therefore, she was very relaxed and affirming toward Aaron. 

“What you need, Buddy?” she asked Aaron as she waited for him to complete his order.  Nothing he said or did from that point on phased her in the least.  I think the other server was as happy for her to take over as I was.  Aaron was just very happy to finish his requests, figure out the mayonnaise issue, and watch as his sandwich was wrapped and labeled. 

Yes, we deal with watching others try to understand our Aaron nearly every day.  I wanted to hug the two who were on duty at Papa Murphy’s a couple weeks earlier.  They completely engaged Aaron on his level as they made our pizzas.  Aaron stood there in total happiness as he loudly talked to them about aliens and spaceships and rubbed his hands together like crazy as they responded to him as if he was talking to them about school or sports. 

Then there was the young man behind the counter at the theater yesterday, his eyes big with uncertainty as Gary and I both exited the restrooms at the same time.  Aaron was talking to him about the Star Wars movie, I think it was, that we had just seen.  All I could focus on was the “Would you please rescue me?” look on the boy’s face as he tried to figure out what to do with Aaron.  Aaron loves a captive audience, and that boy was just that.  He looked it, too, as Aaron talked loudly – of course!- and rubbed his hands together and laughed.  We tried to quiet Aaron and lead him away but Aaron had more to say.  As we finally left, I laughed and I thanked the shocked young man.  I really wanted to walk back to him and say, “You have just encountered the amazing world of autism!”  But I knew that Aaron would follow me and pick up his story where he had left off, so I left well enough alone as we walked to the van, Aaron talking all the way…..of course.

All of these are mostly “Ha-Ha” funny moments.  They may be embarrassing to us at times, or frustrating, but they are not usually awful.  Those more disturbing moments happen at his day group and occasionally at home.  That was also the case on Friday night.  We went from hugs when Aaron came home from his day group to the joy of ordering and eating subs to the downward spiral of Aaron’s cascading emotions.

It all started with me realizing that Aaron wasn’t telling me the truth about his rough day at Paradigm.  I made an off handed comment that hurt Aaron’s feelings, so after we watched Wheel of Fortune he turned to me and had “that” look on his face and in his eyes.  I knew then that he had started down that track of frustration.  Time proved that evening that Aaron wasn’t going to be easily derailed.  His emotions were in a turmoil, as were ours.  Yet if we escalated, it would only serve to further escalate Aaron, which is the last thing that needed to happen.  He escalates very well on his own, thank you.  Gary and I tried to exercise firmness with calmness.  Just when we hoped that Aaron had calmed, though, we would soon hear his heavy steps coming downstairs to engage us once again in the battle that was going on in his head.  He was almost manic in his laughter and in his efforts to unsettle us.  It truly is amazing to see, but not amazing in a funny way.

It’s the other side of Aaron that we don’t see that often at home anymore.  It’s him in a fight to express himself and voice his hurt over his own actions, or over ours.  But he simply cannot tell us with calm and rational words what it is that is bothering him.  Therefore, he chooses something that he knows will either alarm or frustrate us, and he will go off on it over and over again.  Just when we think that our words of great wisdom have reached into Aaron’s head, he starts all over again on that same issue and our heads just bow down in defeat. 

I sat in Aaron’s bedroom with him late that night.  He sat on his bed, legs dangling, trying to express himself and his emotions but clearly unable to do so in the way you and I would.  But he was winding down, I could tell.  I just needed to wait patiently, listen closely, and pray silently.  I literally bowed my head in prayer as Aaron talked.  I knew he saw me but he never asked what I was doing.  He may have thought Mom was falling asleep.  After all, it was after 11:30….way past both our bedtimes! 

At last he said he was going to bed.  I watched as he pulled back his covers and then began arranging his snake, skunk, and frog in perfect order.  I wanted to rush over and yank the covers up over Mr. Snake as Aaron worked and worked and worked to turn his lower skinny stuffed body just the right way.  But I knew that one wrong move could open up Aaron’s emotions again, so I just stood and wearily watched.  Finally all was well with the stuffed animals and the pulled up covers. 

I asked Aaron if he was reading before he went to sleep.

“No,” he said with no emotion.  “It’s 11:47.”

I was relieved.

“Mom?” he asked.  “’Guess what?”

And I knew he had nothing to say.  He does this when he wants us to stay with him.  He asks, “Guess what?” and then tries hard to think of something to say.

“What?” I answered.

“I’m wearing my watch lower,” he said as he pulled his shirt sleeve up. 

Maybe it was a few centimeters lower, but it sure was hard to see the difference.

“Mom?”  he asked again.  “Guess what?”

“What?” I repeated

“When Independence Day Resurgence comes out, do you think the theaters will be crowded?”

Sigh.

“I don’t know, Aaron.  We’ll just wait and see,” I replied.

“Mom!  Look at this!”

And at 11:49 I was looking at the back of the original Independence Day movie box and talking about the plasma ray coming down from the spaceship.

Oh dear.  Would this night ever end?

But if finally did, only after Aaron went up and down the steps several times to tell Gary about plasma rays and new Independence Day movie news and to say good night once again. 

Earlier during the evening, when Aaron was working through his anger, he began feeling badly about his actions.  He came to me in the kitchen and had something in his hand he wanted me to take.  I held out my hand, and Aaron gave me some of his Mike and Ikes.  They were sticky and I’m sure covered in multiple germs, but he stood there waiting for me to eat them.  So I did, praying silently for God to please strengthen my immune system at that moment. 

“I wanted to give you these Mike and Ikes since I’m sorry,” he explained as he waited for me to enjoy them.  So what could I do but eat them? 

And what can we do but try our best to do what we hope others will do with Aaron.  We appreciate the understanding that strangers show to Aaron.  Can we do less?  Understanding what makes him tick, what makes him upset, what it is he is really trying to say when he is so upset……this is all part of figuring him out. 

It’s “getting Aaron.”  Not condoning behaviors, which we don’t, but understanding the behaviors as much as a parent of a child with asthma understands an asthma attack.  I thought of all this when I was sitting in Aaron’s room with him, watching him come to the end of the fight, and realizing how vital it is that I understand.

It means as much to Aaron for us to understand as it does to us for others to understand.  Complicated.  But so very necessary. 

Aaron?  Guess what? 

We’ll keep trying to understand. 

And I should keep a box of Mike and Ikes stashed somewhere for good measure.