I pretty well knew the track we were headed down yesterday morning as soon as Aaron walked into the kitchen after he got out of bed. Funny how that works, but I’ve lived with him for a long time. Not only was it what he said, and the tone of voice in which he said it, but it was also his physical appearance. He looked very tired, his eyes dull and not bright.
“Mom,” he began. “I just want to stay home today and chill down.”
“Uh, that would be ‘chill out,’ I almost said……but I wisely kept my mouth closed. Aaron wasn’t happy, I could tell, and any appearance of correction when he’s in that mood never goes over well. In fact, it usually only gives him something else on which to focus his anger. So I remained silent, and he told me again…..in case my ears weren’t working correctly……that he wanted to remain at home and “chill down.”
I hoped that fixing his hot coffee would help. It didn’t.
I hoped that carrying it upstairs for him would help. It didn’t.
I hoped that some empathy from me would help. It didn’t.
So I knew that it was time to leave Aaron to himself. Besides, I had to shower, so I hoped that his time alone, drinking his coffee, would do the trick. It didn’t.
I knew it didn’t help because soon Aaron was back in my room after my shower, declaring that he wasn’t going to Paradigm. I told him that was fine, but this answer also made him angry. He proceeded to tell me that he hated this staff and that staff at Paradigm. Those words coming from him always disturb me, but I’m not surprised. When angry about something, Aaron will often begin to talk about some person who has made his life miserable, in his opinion. On this morning, it was three of the Paradigm staff.
As Aaron talked, he told me that they wouldn’t let him sit outside and play in the leaves and sticks the way that he likes. I tried to explain why they wouldn’t allow that, telling him about his plan of care and all the effort that went into keeping him safe. Alone time, liability issues, and even his safety meant nothing to him at this point. He was solely focused on how mistreated he was and how he hated those particular staff members.
So I brought up the subject of going to a different group, which was a silly thing for me to do. This doubled Aaron’s anger. He may say he doesn’t want to go to Paradigm, but neither does he want to entertain even the mention of attending another day group. Things between us at that point were definitely “chilling down,” and not in a good way. There was a chill in the air and things were going downhill fast!
Aaron banged a few things in his room, but didn’t break anything. And like a moth to the flame, he kept coming back into my room to talk…..or mostly to rant, which he did quite well, saying the same things over and over. No amount of logic on my part made a bit of difference to him. He stood in my bathroom and kicked the cabinet out of utter frustration, so I marched up the hall in an effort to gain some composure, and then stood in his room. He knew what this meant! He followed me swiftly, and I turned with fire in my eyes as I offered to break something of his. He said no, and he settled down.
But he was still on that one mental track, not reasoning at all with anything that I said. I called Barb at Paradigm to talk about Aaron sitting outside and she explained things to me. She said she would look at his plan of care, and Aaron had decided to go to Paradigm, so I continued trying to get ready. I was taking my elderly friend, Nora, out to run errands after I dropped Aaron off. I called her to tell her that I would be late. Nora doesn’t handle “late” very well, so it took some time to get all that straight. But Nora told me, when I informed her that Aaron might not go to Paradigm, that I should just make him go.
“Easier said than done, Nora,” I told her. “Easier said than done.” Nora has no idea of what it’s like to deal with Aaron. Her words were not what I needed to hear. If we could only make Aaron do whatever he needed to do at any given moment, how wonderful that would be! But one does not MAKE Aaron do much of anything. I was thinking of all this as I finished putting on my makeup. Aaron had looked at the clock, seen that it was time to go, and had turned off his computer. But when he came in my room, he saw that I was NOT ready to go….and off he went again.
“Mom, I’m ready!!”
“Can’t we go NOW?”
“I turned off my computer!”
“You’re taking forever, Mom!”
“Mom! You don’t need make-up!”
“You’re taking forever!”
“Mom! You don’t need earrings!”
“You’re taking forever!”
“You don’t need to brush your teeth!”
“See?! You’re taking forever!”
My lungs must be in great shape from all the deep sighing.
These issues of the brain and behaviors are so very difficult on some days. I can’t see what makes Aaron unable to process emotions, information, and logic like I do. Why was he fine the night before and yet wakes up in this foul state of mind? Why is it impossible for him to follow reasoning, no matter how simple it is? I could understand a wheelchair, or being blind, or so many other special needs that Aaron could have. But all this brain business is so very complex.
The symbol of autism is perfect. That puzzle piece completely describes Aaron, and us as well, as we all try to put together the pieces of the puzzle that make up Aaron’s brain…..sight unseen. It takes lots of understanding. It takes knowing Aaron very well. It takes many shots in the dark, prayers in our hearts as we try to reason with him, and all the patience I can muster on some days.
And lots of sighing.
Well, Aaron went to Paradigm and happily talked to me on the way there about the continuing story he makes up as he sits in the mulch, or in the sticks and leaves at Paradigm. It’s a story he’s worked on for many years as he sits in his relaxing mode, like a soap opera that goes on and on for years, building as he creates it in his mind. And it hit me! That’s why Aaron doesn’t want the staff to bother him. That’s why he sometimes won’t get up right away to come inside when he’s told to do so. He can’t have his story interrupted until he’s at some point that only he knows. Silly me! Why didn’t I think of that?
So at Paradigm I talked to Barb and she totally understood. She showed me Aaron’s plan of care, showing that he could have that alone time outside within certain bounds. I talked to one of the staff that Aaron said he hated, and she was so understanding and kind. Like Barb said, working with this population means you have to be like a duck. You have to treat Aaron’s behaviors like water off a duck’s back.
See how happy Aaron was as I took a picture of him with Barb and her daughter, Casady?
|Barb, Aaron, and Casady|
See how intent he was as he asked to clean a zucchini last night? He wanted to help! That’s always awesome.
And this morning, he not only gave Gary a big hug before Gary left for work, but I got this picture from Casady of Aaron and Natalie hugging at Paradigm. Casady said, “Aaron’s affection game is strong today.” Let’s hope it stays that way!
Did Aaron’s two small seizures last night rearrange those neurons in his brain? Who knows? I’m just happy that Aaron didn’t want to “chill down” again today, even though tomorrow may very well be another story.
Aaron’s writing more than one story, that’s for sure. And some days, I’m just trying to piece it all together.