Chill Down

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. 

Bumps In the Road

I don’t know that there is any one routine of Aaron’s that is more important than another, but if I was pressed for an answer I would say that his bed time routine is way up there near the top of his Important Routines List.  And by the way, it would be just like Aaron to keep a list of such things if he thought of it, in yet another notebook for which he would find the perfect spot in his room….and there it would stay, placed exactly so, every single day of his life. 

The strictness of his bed time routine, which includes going to bed at or very near the same time that I go to bed, is the reason I began preparing him for a change early Sunday evening.

 “Aaron,” I began, “I need you to prepare yourself because I may go to bed a little early.  I’m getting a cold and I don’t feel well.” 

I could tell right away that he didn’t like this idea.

“What time?” he asked with a frown on his face.

“I don’t know exactly what time,” I replied.

Aaron thought for a few seconds, pondering this unwelcome change.  Mom might go to bed before I go to bed?  

“Will it be before night?!” he asked with great concern.

I knew he meant before dark.  Would I go to bed before dark?!  How disruptive and awful…..for HIM.  Never mind about my cold or about how I felt.  Aaron is, without doubt, most often about Aaron. 

I assured him that I would not go to bed before night, and he walked away to think on this sudden turn of events.  But as it turned out, I ended up asking Aaron later that evening if he wanted to play a game of SkipBo.  That game took up part of the time before night, so Aaron was saved, and our bed time routine was really no different than any other night. 

During the night some storms moved through our area.  They were pretty rough storms, and we briefly lost power several times.  That meant that Aaron’s clock on his night stand was disrupted and probably flashing, I thought, as I reset the clock on the microwave that morning.  Sure enough, when Aaron walked in the kitchen later, the first words out of his mouth were about his messed up clock. 

“Mom, the clock by my bed shut down, so I can’t write in my book what time I got up.  Can you fix it now?”

Knowing the importance of this part of his morning routine, I followed him upstairs immediately.  He called out the time to me from his satellite clock by his desk as I pushed the buttons on his clock and got the time just right.  He then wrote the correct getting-up time in his notebook, and all was well for the moment.

Aaron dressed and came down to the kitchen again to take his pills.  Soon he was holding an object of great interest to him…..a summer squash from our garden that was very dark, bumpy, and tough.  Any item that is the least bit unusual holds Aaron’s attention, and for the moment this bumpy squash was what Aaron wanted to hold and feel and talk about.  In fact, he carried the squash up to his room and placed it on his chest of drawers.  I was tempted to bring it downstairs right away, but I decided to leave it there for the time being.  What did it hurt?

Aaron had a doctor appointment later that morning.  As we drove across town, he told me about a song from a movie he was watching.  He hummed the song for me to hear and to identify.  Usually I can’t really tell what he is humming, but this time he did a great job and I knew the song….except for the life of me I couldn’t remember the title.  I told Aaron about my Sound Hound app that would let me hum a few bars while it identified the song, so Aaron could hardly wait for me to do just that.  We found an area of the doctor’s waiting room that had no one sitting close, and so with a very excited Aaron sitting beside me, I sat there humming this song into my phone.  It was pretty funny!  And sure enough, Sound Hound told us that the song was “Joyful, Joyful We Adore Thee.”  Aaron bent over in his chair, his hands rubbing together quickly and with great delight, as I wondered how on earth I could forget the title to that song. 

We waited to be called and Aaron, who can hardly keep his doctors straight by name, asked, “Is it gonna be that one who asked me if I use drugs?  That was dumb!”  No amount of explaining will ever change Aaron’s mind that it was very dumb for a doctor to ask him if he uses drugs.  The doctor soon called for Aaron to come, so we both followed him to his office.  He stepped back for us to enter, and he said, “Hi, Aaron!”  To which Aaron replied….with nothing.  Total silence.  I was glad that he smiled with what I hoped was understanding.  This is just our second time to see this doctor, who is supposed to have an understanding of autism.  I hoped that understanding of his was working today.

The doctor began asking questions about how Aaron was doing since the last visit.  How are his seizures?  So we discussed that issue at length.  How are his behaviors?  We talked about that as well.  I was talking and the doctor was listening, when suddenly on my leg came a big WHACK!!

Aaron had soundly hit me on my leg, right in front of the doctor.  And then Aaron immediately said, “Tattle teller!!”

That was what Aaron used to say when he was a kid if someone was telling something they shouldn’t, or something he wished they weren’t.  The doctor’s eyes were staring from over his computer screen as I talked to Aaron.  I knew very well why Aaron whacked my leg.  He was frustrated at being talked about.  He does have feelings.  So I explained why the doctor needed to know these things, and the doctor chimed in as well, and Aaron settled down.  Oh well.  The doctor may as well see Aaron as Aaron is.  And it was probably good for both the doctor and me to be reminded of Aaron’s sensitivities.  

I know that Aaron is facing another sensitive issue today, too.  One of his favorite Paradigm staff has left, and so Aaron’s life there will change a lot.  I know that if one thing in life is certain, it is that life will change.  Easy for me to say……far harder for Aaron to deal with in an appropriate way.  Of all days for Aaron to find this out, too.  Aaron was grouchy this morning about going to his group today.  Three days off sometimes does that to him.  He went willingly after working through it, but gave the van door a little harder shove closed than usual when he got out.  I have no idea how his day has gone or if he knows of his staff that has left, but I’m sure I’ll soon find out when he comes home. 

I thought of all this when I walked upstairs earlier and saw the bright yellow squash sitting in Aaron’s room.  That squash, so full of bumps.  The bumps are what fascinate Aaron.  They are also what make that squash somewhat tough. 

Aaron has plenty of bumps in his life, too.  I’ve seen several of them in the past couple days, much less all the years that he has dealt with so much.  Bumps in the road are a part of life.  Some seem to have more bumps than others, that’s for sure.  Gary and I are sometimes able to ease Aaron over the bumps, like I tried to do concerning the possible change in my bedtime.  Sometimes issues are easily solved, like changing the time on his clock or humming into Sound Hound.   Other matters are deeper, like the one evidenced by the whack on the leg that Aaron gave me.  He didn’t like being discussed, but it’s necessary.  It’s painful for us both, and is a bump that he and I both deal with at nearly every doctor visit.  

This new bump, of one of his favorite people being gone out of his life now, will be a huge new bump for us.  I don’t know how it will affect Aaron.  He may surprise us and do well.  He may have good days and bad days.  But it’s a bump that we will be forced to navigate one way or another.  I’m thankful for the wisdom that God promises to give to those of us that are lacking and that ask Him for it.  I have been asking today, that’s for sure!

Maybe I’ll just leave that bumpy squash in Aaron’s room.  It will remind me every time I see it of this time.  Hopefully I will look at it in the weeks to come and remember how God eased us over yet another bump in this road we travel with Aaron.