Category: Adult Autism

What Happened to Happy?

It’s very interesting, as we live this life with Aaron, how we see all the ups and downs that go along with autism and Epilepsy and developmental delays.  We not only see the ups and downs, but we deeply experience their effects on him personally and on us as well.  Certainly anything that affects Aaron impacts Gary and I, too, and what a ride it can be!

Aaron really wants to enjoy happiness, but he wants it on his terms.  Sometimes that’s just not possible.  There are occasions where Gary and I walk a fine line as we attempt to provide a happy environment for Aaron without giving in to his every whim.  It’s like being on a boat.  We can be trolling along, happy and peaceful, and then all of a sudden we run upon choppy seas that threaten to overturn us.  Some days we can see the storm coming with Aaron as we read his mood.  Other days the storm swirls in out of the blue, unexpected, catching us off guard and then demanding all of our skills that we hoped we’ve learned over the years of parenting Aaron. 

This past Sunday night, Aaron and I were in the kitchen after playing Skip-Bo.  He was thinking of the next day as he said, “Mom, tomorrow’s Paradigm.  Let’s not let me go!”

I laughed at the funny way he phrased his comment, and then he laughed, and all was well.  The next day he was more adamant about not wanting to go.  Aaron loves Paradigm, but his dream life would be to stay home every day playing on the computer or watching movies.  That’s not going to happen and he knows it, but he still tries to test those waters.  He did go to Paradigm, but he did slam the van door and so I prayed as I drove away that somehow he would have a good day.  Barb said he was VERY grouchy when he came in but then settled down and had a really great day.  Yay!  Not yay for VERY grouchy, but yay that the rest of the day was great. 

Aaron pushed my buttons when he got home, blaming me for ruining his dream life and other ills as well.  Supper didn’t suit him, so Gary and I actually enjoyed a nice meal alone with uninterrupted conversation.  May as well see the silver lining in the cloud.

Later, Aaron and I had a talk, where I got firm and Aaron saw the light.  He was nice the rest of the evening…..almost.  Then came bedtime.  Why do so many things happen at bedtime?!  For instance, a couple weeks ago it was time for bed and Aaron knew it was time for bed.  If anyone knows anything about time, it’s Aaron!  But he was watching a movie, not wanting to quit until he was at some magic point, and so I did all the bedtime chores I do for him….and still he sat at his desk, engrossed in the movie. 

So I said goodnight, with some aggravation in my voice, and went to my bedroom.  I locked the door because I figured I would be followed.  Sure enough, I soon heard Aaron’s heavy steps coming up the hall.  He knocked loudly on the bedroom door and then said, “Mom!  I want to say goodnight in my room!”  You see, I hadn’t said our goodnights in the proper Aaron way.  I sighed and opened the door, where Aaron repeated what he had said about saying goodnight in his room.

“Come on!” he commanded as he walked briskly up the hall toward his room, before I could object.  But I did.  “Aaron,” I protested.  “I already said goodnight.”

“But you weren’t happy,” he explained.  How perceptive, I thought.  So, very tired and just wanting sleep, I followed him to his room.  He went into his room, turned toward me, and reached out for a hug.  I complied with an obligatory hug, not a heartfelt one.  I was still aggravated….and Aaron knew it.  I even said goodnight, but Aaron stared hard at me and then said, “You’re still not happy!”

So out went his arms again and this time I had to smile, more inside than out, as I gave him another hug.  I tried to make this hug more sincere, and I even did smile an outside smile as he stared at me again.

“Are you happy?” he cautiously asked.  And I assured him that I was happy, so that he would be happy, and I finally was released to go to bed…..at last!  His insistence on going to bed happy really was the right thing to do, much as I didn’t want to participate at that point, and his perceptions were also pretty amazing. 

Back to Monday night.  On Monday night I found myself wishing with all my might that Aaron wanted to be happy.  You see, Gary and I are getting ready to paint Aaron’s bedroom.  Gary has patched Aaron’s walls, but on Monday night Aaron wanted to show Gary a huge mark on his otherwise repaired wall.  Gary was shocked to see the mark.  We both think that Aaron made that mark on Monday morning when he was mad at me, but Aaron wouldn’t own up to that at all.  In fact, when Gary asked Aaron when he had made the gouge in the wall, Aaron hit the roof.  Boy, did he ever react!!

Aaron accused Gary of accusing him of making the mark.  “Well,” Gary replied, “who else could have made it?”  Aaron was beyond furious.  He became livid.  Gary and I both ended up in Aaron’s room, where Aaron erupted over and over.  He was in a full meltdown, and it wasn’t pretty.  It’s actually very amazing to see the progression of his thought processes when he’s out of control like that.  I’m just thankful that we don’t see this scene very often.  He never owned up to making the mark, but he sure did fling out all sorts of insults and angry comments.  I told Gary to go on to bed, and I sat with Aaron for awhile.  He was mad at me, too, at this point.  He watched a movie for a few minutes and then commanded me to leave his room. 

What happened to happy?  It was totally gone at that point!  I went to our bedroom, where Aaron followed and barged in, yelling some more and refusing to leave.  He did finally leave and he did stay in his room.  He went to bed around 12:30.  I’m sure he wrote down the precise time in his journal. 

He went to Paradigm the next morning.  I praised him for his maturity.  When he returned home that afternoon, I could tell that he was still struggling with some anger.  Yet when Gary got home, Aaron was fine.  We had supper and a pleasant evening, which was so welcome after the awful anger of the night before.  Aaron asked me to tell Gary what I had told him about being mature, so I told Gary how mature Aaron was to go to Paradigm without a fight.  Aaron stood there rubbing his hands together as I praised him to Gary, so happy at those words…..at last!

Yesterday after supper, Gary and Aaron took a walk out in our back yard with Jackson.  I looked outside and felt warmed by the sight of the two of them walking together.  What a picture of reconciliation!  The restoring of relationship is something we do fairly often with Aaron.  We must….because we love him and because it’s right.  All of us have these family moments and life moments where we have to come together again with those who have angered or hurt us.   Gary and I have to be the adults in these situations with Aaron.

But I guess that’s not always true, is it?  Didn’t I just tell about how Aaron came to get me when he knew I wasn’t happy?  How he insisted on being happy before we went to bed?  So I know that there are times when Aaron can and does get it right…..and I have it wrong. 

Our boat is once again sailing calmly.  He knows that tomorrow is Friday and that I’ve agreed with his request of a Papa Murphy’s pizza for supper.  Yet I know that the winds can change direction at any time, and another storm can blow upon us.  I know that I will once again, at some point, be asking what happened to happy.  Let’s pray that happy hugs are all it takes next time to bring the ship upright and make it steady again.    

Let’s hear it for happy!

And hugs!  Lots of happy hugs!

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. 

Who Am I Now?

Aaron has always called us a variety of names, some nice and some not-so-nice.  No amount of lecturing, fussing, or instruction has made him change that practice.  Sometimes his name calling shows us the mood that he is in, or the way that he is feeling.  Take this morning…..

Aaron walked into the kitchen.  It was early and he had already talked to me upstairs after he got out of bed.  He was mellow and in a good mood, so when he walked into the kitchen he said, “Hi Sweetie.”  That was it.  He didn’t add anything sarcastic, which I expected but was relieved not to hear.  So I returned his greeting by calling him sweetie, and again I awaited a less-than-flattering response.  However, he didn’t say another word.  Later, when I went into his room to get his glasses for cleaning, I said, “I’m just getting your glasses, sweetie.”  I still expected something negative from him, but he was still quiet.  That was nice.  He and I were still sweeties.

When it was time for him to turn off his computer, I walked in his room again to tell him so.  He was quiet, but he didn’t turn it off.  Finally, after a couple reminders he finally turned it off.  He wasn’t really happy, though, because he knew I was a little frustrated…..and because he doesn’t like to be hurried.  As he got in the van, I asked him if he had closed the family room doors.

“Yes, Bossy,” he replied.  Uh-huh.  He really was frustrated at being told to hurry, and then being reminded about the doors.  I had gone from being “sweetie” to being “bossy.” 

As we drove to Paradigm, I reminded him to tell Barb that he wouldn’t be there on Monday due to a doctor appointment.  “Ok, Master,” he answered.  So now I was master.  The one in charge, who was reminding Aaron of something he needed to do.  An annoying Master, at that.  His tone was not exactly loving.

Later, as we pulled up in front of Paradigm, he asked me if I could come in.  I had errands to run and Aaron had already made me a little late, so I reminded him of that as I told him that I couldn’t go in with him this morning.  I knew he was disappointed at this, but did he tell me that?  No!  Did he convey in words his wish that I could come in?  No again! 

Instead, as he got out of the van and I said good-bye, he responded with, “Good-bye, my Ugliness.” 

He shut the door before I could respond.  Hey!  Now you’re getting personal, Aaron!  Which is exactly what he wanted to do.  He wanted to get personal so that I would feel as bad about the name I was called as he felt about the fact that I wouldn’t go inside Paradigm with him.  As strange as it seems, and as inappropriate as it is, I know that this is Aaron’s way of conveying how he is feeling.  I’ll talk to him about it when he comes home, like I have many other times, knowing that he will not likely change that way he has of communicating. 

So I guess that this morning I was a woman of many personalities.  I went from Sweetie, to Bossy, to Master, to my Ugliness.  I’m getting confused!

One more thing – Aaron doesn’t like it when I make my voice sound different or funny.  It almost always irritates him.  Sometimes even just a mild inflection from me, or maybe talking a little softer or louder, makes him comment….and it’s rarely complimentary, as you can see from his name calling. 

One morning he came in the kitchen and I asked him if he wanted some coffee.  I told him that I had made fresh coffee.  I don’t quite know what it was, but something about my voice made him irritated that morning.  He told me not to say it like that….whatever “that” was…..so I just ignored him and went ahead with pouring his coffee.  But he wasn’t done.

“I’m gonna tell Barb that you speak in strange voices sometimes!” he declared.

So I have multiple personalities and speak in strange voices, to hear Aaron tell it.  Things are far worse around here than we let on, I guess. 

My Ugliness?  Where’s my mirror?!

 

Yes, Another Great Clips Story!

I just can’t resist.  Here I go again, writing yet another blog about Aaron’s visit to Great Clips this morning.  I’ve written several blogs about his times there.  What is it about Great Clips, you might ask?  Or maybe not.  Anyway, it’s as if Great Clips is a microcosm of Aaron’s life and ways every time we go there.  He’s funny and unfiltered and embarrassing……and more……from the second he walks in the door.

Last night I told Aaron that we might go to Great Clips the next morning to get his hair cut.  The operative word was MIGHT, because somehow Aaron rarely hears that word when it comes to possible places we might go.  That’s why I usually wait until the very last minute to tell Aaron of a possible trip.  If it doesn’t work out, he is not happy at all.  The operative word is NOT, as in NOT happy AT ALL.  But I wanted to tell him last night that we might…..MIGHT…..go to Great Clips so that he could be mentally prepared to get up early and leave the house hopefully before 9:00.  This is out of Aaron’s routine and he needs a good reason to get out of his routine.  A GOOD reason.  And Great Clips is a GOOD reason for Aaron.  He loves going there. 
 
The reason I had told him we MIGHT go to Great Clips is because I never know how long the wait will be for a haircut.  If the wait is too long as we are on our way to his day group, then we can’t go.  No MIGHT about it at that point, but Aaron never sees it that way.  So this morning, my heart sank when I logged in online and saw that the wait was 16 minutes.  Aaron would love the precise time, by the way.  That would make Aaron late to arrive at Paradigm, though.  But Aaron had forgotten all about the MIGHT word as he walked with resolve out to the van.  Only 9:02 and the wait was already that long on a Monday?  Bummer!

Aaron has totally no reserve when he barges through the swinging door of Great Clips.  That’s why you would have seen me in a mad dash to grab my keys and purse as I hurriedly opened the van door, hoping to beat him to the front door.  I rarely do, and this morning was no exception.  He barreled in just inches in front of me, but being aware of this he wasted no time in hurrying as fast as he could to the front desk as he bellowed, “I need to hurry and go to Paradigm!!”

And we’re off, I thought, as I tried to regroup while the two men who were waiting and the two men who were getting haircuts just stared at unusual Aaron.  The stylist was new to us, but she smiled and walked over to the computer to see that we had signed in.  At the same time, I was correcting Aaron and giving him a little Emily Post lesson on good manners when barging into Great Clips…..all of which meant nothing to him.  He was already checking out the container of tempting ball point pens, hoping he would be able to sneak at least one of them into his waiting pocket. 

We sat down, minus the Great Clips pen, and I continued with my manners lesson.  “I was just trying to get them to hurry,” he explained.  And I continued to explain the concept of the word “rude.”  Should I include the word “shocking?”  Maybe not today.

But I WAS trying to reinforce the idea of talking softly as Aaron sat there talking in his usual loud voice.  He didn’t like that lesson, Emily Post or not, and he reached over to give me a whack on the arm.  I felt my face getting red, mostly from embarrassment, as I felt now three sets of eyes on me from the three men who sat around the waiting area.  With the lesson on not hitting and on talking softly under his belt, Aaron got up and lumbered across the room.  I just watched him with bated breath, wondering what he was going to do now.  He had spied the DumDum suckers in a glass container on the counter, so he took one and came back to his seat, where I helped him open it and in his mouth it went.

After a couple minutes, he took it out of his mouth and started talking again.  I saw his green tongue, and so I told him that his tongue was a nice green shade.  “Green?” he asked loudly as held up his sucker.  “This sucker is red!”  Ah yes, there’s that color blind factor again.  Dad would have confirmed that it was red as well, but I confirmed that it was green as Aaron stuck his tongue out for further inspection.

 
Soon the stylist called for the next customer.  “Kelly?” she called out.  And the man with the name Kelly got up and went to the salon chair.  Aaron just looked at him and then said, loudly of course, “Kelly!”  I didn’t want Aaron to say another word, not knowing what opinion he was going to give of that name or anything else that might come into his mind, so I shushed him quickly with a pat on his leg and a reminder in his ear.  The stylist who was getting Kelly ready looked over and said, “Hi, Aaron!”  She knows Aaron and her greeting surprised Aaron but made him happy, too.

Not long after, thankfully, it was Aaron’s turn and so he heard his name called.  He stood up beside me, taking his glasses off first and then his watch.  He always takes off his watch as I sit there and always tell him he doesn’t have to do that, but he always takes it off anyway.  He is oblivious to the stares of the other customers.  And the stylists always smile.  As soon as Aaron was seated, another stylist came out from the back and I heard her say, “Hi, Aaron!”  It’s so sweet how many of them know Aaron and greet him by name, with big smiles.  He IS hard to forget, that’s for sure.

Somehow, as soon as Aaron sits in the chair, he is often speechless.  The stylist asked him a question, but he remained silent, so she mostly just cut his hair and let him enjoy the experience.  We paid at the counter a few minutes later as I kept one eye on Aaron. 

 

No, Aaron, you don’t need another DumDum.  Quit trying to put it in your pocket.  Don’t you try to sneak it out of there!  Put it back!

No, Aaron, you don’t need a Great Clips pen.  You have thousands of pens at home.  Or at least it seems like it.  Do NOT put it in your pocket.  Put the pen back!

Finally, we were finished.  The stylist was paid and given a tip.  The DumDums were still in their glass container, and the pens were perched where they belonged, with none missing…..I think.  Aaron had put his glasses on and had situated his watch halfway up his arm as he always does.

We walked to the van. I was opening my door when Aaron said, loudly, “Mom!  Mom!  Look at what martial arts does!” 

And there he stood at the window of the martial arts studio in front of where we parked, pointing to the poster on the window as he made sure I noticed each martial arts move listed there. 

Just when I thought he couldn’t be any more noticeable, he proved me wrong.  I was wishing he wanted to get IN the van as quickly as he wanted to get OUT not 20 minutes earlier. 

Oh well, I just roll with the flow.  I figured my face needed a little color today anyway. 

Do you see why I wait as long between haircuts as I possibly can? 

 

 

My Other Body

Last night Aaron came up to me and said, “Mom, the carpet in us kid’s bathroom is wet.”  I asked him why the bath mat was wet.  He answered, “Because when I finished my shower, I dried my other body.  Then my feet were wet when I stepped on the rug.”

I just smiled.  I wanted to ask him about his other body, but instead I just enjoyed the unique way that Aaron describes things and expresses himself.  And I’ve been thinking since then about how many different ways Aaron reacts to life around him.  He has many ups and many downs.  Sometimes it really is like he has various bodies.  Then Gary and I feel like we have a variety of bodies, too, in any given day as we react to how Aaron is reacting.  We do get jerked around a lot, waffling between pleasant moments and pulling-out-our-hair moments.

Last Sunday, Aaron’s week started out nicely.  He found something very special as we walked around the back yard.  Only Aaron would find a turtle virtually hidden in our thick grass, up near our patio.  I walked right past the turtle and then heard Aaron saying, “Look, MOM!!”  I turned around to see him holding the turtle, poking his finger in to where the turtle was hiding his head as I warned him that he would get bitten.  Aaron proudly held his find before he and Gary turned the turtle loose in the finger of the lake that comes onto our property.  The turtle was still for a moment and then with a dive took off into the welcome water.  Aaron was delighted, although he still was hoping he had found a turtle pet. 

 
Later that night he talked to both Andrea and Andrew on the phone.  He always has to tell Andrea about his latest movie that he’s watching, describing it in detail.  She always shows great interest whether she really is or not.  I would say she’s usually not.  Neither are we, honestly.  I have no idea how many movies it is now that Andrea is either supposed to rent to watch, or watch with Aaron when she comes home.  Aaron probably won’t forget.

He talked to Andrew about racing, which is so unusual.  There was a time when Aaron was very jealous of Andrew.  He didn’t want to see him on ESPN when we watched an NHRA race, but now Aaron really enjoys seeing Andrew.  It was fun to hear Aaron say, “Hey, Andrew, I see you on TV!”  And Andrew acted surprised by that, to which Aaron affirmed that this was true.  “Yes, I see you on TV!”  So Andrew said, “Well, maybe someday I can wave and say hi.”  Aaron’s face broke into a huge smile.  “You would do that?” he asked.  “You would wave and say hi on TV?”  Andrew assured him that if he could ever do that, he would.  “On TV?!” Aaron asked again.  It was a sweet exchange between those two brothers.  Aaron, who is the oldest, seeming again like the baby of the family in more ways than one.

On Monday, I worried that Aaron would have a hard time going to Paradigm, but he did beautifully that day…..and all week, actually.  After the huge adjustment of returning to his day group after being gone for a month while he was sick, this second week of smooth sailing was so welcome.  Even with Bryan gone this week on vacation, which meant that Aaron wouldn’t be helping work on houses, he still had no problem going every morning.  Except for a little on Friday, but more on that later.

He came home on Monday in a very good mood.  All was well and happy for our evening…..until I walked in the kitchen and saw him with a second glass of iced tea.  I let him have one glass while we watch Wheel of Fortune, but he’s famous for trying to sneak in two glasses.  I caught him in the act as he was putting the second glass to his lips, so I told him that the glass of tea was his special treat then.  I wasn’t going to fix him anything else.  And the tide turned.  The mood darkened, dramatically.  He became belligerent.  The past few happy days came cascading down into defiance from Aaron.  He hovered behind me on the computer, saying whatever mean thing he could think of without totally crossing the line.  He gave his fake sinister laugh to add some effect.  He would walk away for a minute, only to return and repeat his actions.

I finally had Aaron come into Gary’s study and sit on the floor.  Gary and I talked and talked to him, not seeming to really make any headway at all.  It was just amazing to see how his thought processes just don’t process at all like ours do.  He wasn’t connecting the dots in any way like we do.  It was just another lesson in frustration for Gary and me.  Another evidence of Aaron’s different bodies, if you will.  How quickly he can go from joy to anger, and how tremendously hard it is to reason with him.   

Sometimes our bodies are tired, as are our spirits, and such was the case Monday night for Gary and for me.  I’m thankful to have Gary by my side.  He fills in many gaps for me, and I do for him as well.  We’re a team…..a tired team on occasion.  Finally that night, things calmed down and all was well when Aaron went to bed.  We can only pray that something we said stuck in that brain of his.  We know we have to keep trying.

Aaron had times of showing compassion this week, which always makes us very happy because typically Aaron is all about Aaron.  He told us that he gave one of his bean burritos to Jennifer, his friend at his day group.  And he gave her his water, according to him.  He wanted to take some zucchini from our garden to Barb, which he did.  He’s been known to sneak produce out of the house in one of his deep pockets, but this time he did it with my permission.  He does sometimes love to share. 

When we talked to Andrea later in the week, he was very concerned to find out that she was sick.  She ended up having pneumonia in both lungs!  He wanted to talk to her, but I resisted because I knew she really didn’t feel like it.  But Aaron asked her right away if he gave her his sickness when we visited her in Houston, and he showed real concern for her.  That was sweet to see. 

On Friday morning, I had to go to the air base for some routine blood work for my yearly physical.  I left early, but the lab was busy and so it took me longer to get home than I had planned.  I knew when Aaron called me, sounding very down and sluggish, that we were in trouble.  It was confirmed when he said he didn’t want to go to Paradigm.  I got home to find an angry Aaron, but a dressed Aaron.  You see, his routine was all messed up because I hadn’t been at the house.  He slept a little later than usual, had to get his own coffee, and was just generally unhappy about the whole state of affairs.  But of all things, miracles happen, and Aaron ended up going to his day group willingly.  Another crisis avoided! 

Then came seizures on Friday night/Saturday morning.  Just three seizures and not as severe as they sometimes are, but still sad to see.  Aaron’s body gets jerked around physically, that’s for sure.  He slept later than usual yesterday morning, but woke up fully functional.  That was a relief!  Yet he was grouchy because of the seizures and not feeling well, so I had to tread lightly for awhile.  Just another example of the many bodies of Aaron.

He made me laugh this week, as he often does……some days more than others.  One morning I told him it was time to leave, but he told me to wait a minute.  I repeated that we needed to go and he told me again that he was almost done…..just wait a minute.  I looked in his room and found him, of course, watching the movie credits from the movie he just finished.  He was rubbing his hands together, a sign of delight, and as always I laughed.  The credits cannot be interrupted, so I waited until he was down to the very last word and then he happily turned the DVD off and away we went. 

 
Then today, as we watched racing and he tried to catch a glimpse of Andrew, he ended up sitting like this.

 

Yes, that’s our cushioned ottoman lid on his head.  Good balance, don’t you think?

But perhaps the sweetest thing was when we sat down for lunch today.  He said he would pray, which he doesn’t often like to do.  He almost always says two phrases when he prays.  The phrases may vary, but there are almost always just two.  Short and sweet.  So we held hands and Aaron said, “Lord, thank you for this food.”  He paused, then continued.

“Please help me feel…..I mean, help ANDREA feel better.  Amen.”

That was his sweet body……and a sweet moment to cherish. 

One Minute Matters

The last blog I wrote told about Aaron’s difficulty in returning to his routine.  He had a very difficult three days as he adjusted to leaving the house every morning and going back to his day group.  Monday wasn’t too bad, Tuesday was awful, and Wednesday was very “iffy.”  I wrote about Tuesday……the slumped shoulders, sitting in the rocks, actually throwing some rocks, etc.  On Wednesday, I went into the building ahead of Aaron because he said he wasn’t getting out of the van.  I just got out and headed inside, and so he followed me.  He talked to Barb, who knows how to calm him, but he kept saying he wasn’t going to stay.  Barb said she would just drive Aaron in her truck over to where Bryan was working on a house, so Aaron walked outside with her, all the while saying that he was NOT staying at Paradigm.  I just stayed mostly quiet.  Aaron stood at our van, but finally went with Barb and then had a good day.  I drove away just asking God for wisdom, patience, and strength.  We ask God often for those three things when it comes to Aaron.

Later Barb and I texted.  She said Aaron was totally fine the rest of the day.  I told her that I think he is testing me, and she said that they would do everything they could to see that I passed the test.  And the staff at Paradigm truly does just that.  They know Aaron, and they know how to work with him….how to calm him……how to understand what’s behind his actions, when they can understand.  Sometimes no one can figure him out. 

Bryan and Aaron worked together all week on different house projects…..residential settings that Paradigm manages.  Aaron was quite proud of the fact that he helped Bryan put tile down on a floor, but on Thursday he brought a piece of the “tile” home and we saw that it was actually laminate flooring.  It wasn’t long before Aaron had given me a resounding whack on my rear with his little plank, and he got a good lecture from me.  I learned the next day that he had done the same to Barb.  He just never seems to get it…..rarely is able to control those impulses.

 
Anyway, he came home on Thursday all smiles as he couldn’t wait to show me what Bryan had fixed for Aaron to wear around his head as they worked.  It was fun to see Aaron smiling and so happy.  He went from his slumped shoulders on Tuesday:

 

To a face full of smiles on Thursday:

 

Today he said, “Mom, Bryan told me that I’m his number one man.”

“Oh, Aaron,” I replied.  “That is such a nice thing for Bryan to say!”

“I think it’s weird,” Aaron flatly replied……which made me laugh……which Aaron also thought was weird. 

He’s so funny.  Last night he was watching an alien movie in his room, having a blast.  But when he came downstairs and saw a sweet family scene on the movie “McFarland,” he said, “That’s weird!”  So for Bryan to call him his number one man seems weird to Aaron, but deep down I think Aaron loves it.  He just doesn’t know how to convey that sentiment like we do.

Just like he doesn’t know how to handle his frustrations over returning to real life after a month away.  Instead of sitting and having a conversation about it, he has to yell and threaten and cry and throw rocks.  Then our frustrations mount, and we have to be so careful how we handle it.  I’ll admit that it gets old.  Gary and I were talking about it last night.  We really don’t know what a “normal” life is at our age.  Other parents of children, young or adult, with behavior issues know exactly what I mean.  Yet there aren’t many great alternatives, and we do love Aaron.  God gave him to us, so we just take one day at a time.  And we are ever thankful for people, like the staff at Paradigm, who work so well with Aaron and help us on this journey.

We see progress with Aaron, but his core issues will probably always be the same.  I’ve always tried to see the humor in so many things that he says and does.  Sometimes I don’t have to look hard, for he truly is so funny so often.  On Friday, our electricity went off a couple times, so Aaron’s clock by his bed was messed up.  As I was helping him get everything ready for bed, he asked me if I would set his clock.  I told him to look at his satellite clock beside his desk and tell me the exact time so that I could get it right on his night stand clock.

“OK, Mom.  It’s 10:05,” he said.

So I punched the buttons for the hour.  Then I did the same for the minutes. 

“It’s 10:06 now, Mom!” he told me.

And wouldn’t you know, I punched just one too many and the clock said 10:07.

“Oh well,” I said.  “One minute won’t matter, Aaron.”

Who was I kidding?!  And I knew it.

He just stood there staring at his clock.  And I knew that one minute did matter.  It mattered very much to Aaron.  He can halfway brush his teeth.  He can wear the same pair of socks for days in a row, seriously, if I don’t catch him.  But one minute too fast on his clock is not tolerable.  Not at all.

“No,” he replied.  “I want it at 10:06.”

So I hurried and re-punched the buttons, but by then it was nearly 10:07.

“Wait,” Aaron said. 

And he began counting the seconds.

“48…49….50….51…” he continued.

And when he said “60!” and the time was now officially 10:07, I punched the little button very carefully, ONE time, and then all was well.  It was 10:07 on his nightstand clock and on his satellite clock.  They were synced correctly, and now Aaron could go to bed.

If only he would sync his life to ours as easily!  If we could just punch a button here and a button there, and make us all line up together in harmony…..wouldn’t that be awesome?

But I know if we did that, then we would also miss a lot along the way.  Like I told Gary last night, even in the midst of our tiredness and sometimes deep frustrations, we really can look at many amazing facets of Aaron.  We just need to remind ourselves of that on some days when no matter how many buttons we push, things just don’t line up the way we want. 

Honestly, on many days we end up syncing ourselves to Aaron.  We can pretty well predict how he’ll react to different situations, and what he’ll say.  He doesn’t sync himself to us nearly as well, but when he does it’s cause for celebration.  Like how he made it through this week and the expectations that were made of him.  It was a huge accomplishment for Aaron!

But tomorrow morning may be another story.  I need to remember that ONE minute.

48….49….50…..51…..

The Way Aaron Wants Things

Transition:  a passage from one state, stage, subject, or place to another; CHANGE.  (Webster’s Ninth New Collegiate Dictionary)

From Online Asperger’s Syndrome Information and Support (O.A.S.I.S.):  Individuals with Asperger’s are easily overwhelmed by minimal change…..  MINIMIZE TRANSITIONS.

Guess what we are in the middle of with Aaron?

CHANGE!!

TRANSITION!!

And we cannot minimize this transition period.  Our motto, and Paradigm’s motto, this week is “Hang on, breathe deep, and hope and pray for the best.”

Aaron returned to his day group, Paradigm, yesterday – almost a month to the day after he entered the hospital for a week.  After returning home from the hospital, he had doctor appointments…..he had lots of healing to do……lots of strength that needed to return…..and setbacks, like his rash last week that needed to be treated.  We also took a trip to Houston over the Fourth of July, spending five fun days with Andrea and on the road.  Life was good for Aaron, especially after he started feeling better.  He loves nothing more than staying home with his computer and movies and games and television.  Throw in an occasional shopping trip, eating out or bringing in take-out, and what’s not to like?

I’ll tell you what’s not to like.  Returning to the real world, to a schedule, and to Paradigm is what’s not to like…..for Aaron.

Transition….big time!

One evening I was in Aaron’s room as he got ready for bed.  I had helped with putting Mr. Snake, Mr. Skunk, and Mr. Frog in his bed.  Every bit of each stuffed animal must be just perfect, placed exactly where Aaron’s unwritten rules say they should go.  I thought I had them perfect, but they were just a tiny bit “off” and so Aaron pulled back the covers I had pulled up, and he rearranged them just the very littlest bit.

I chuckled at this.  Then Aaron said, “I want things the way I want them.”

 
No truer words were ever spoken!  This describes Aaron better than any concise statement I could have ever tried to formulate.

Aaron wants things the way he wants them.  I guess we all do, really.  But for Aaron, as with so many autistic individuals, the desire is carried to the extreme at times.  Many times, in many ways.  It’s very difficult to dissuade Aaron from wanting things the way he wants them, too.  And to accept the fact that life doesn’t always allow him to have things the way he wants them. 

Staying home has always been the way Aaron wants his life to work.  So being home for all these weeks was just the best case scenario for our Aaron.  Going back to Paradigm is the worst thing, in his mind, that could have happened.  And it happened.  It’s happening now.  And we are hanging on for the ride.

Yesterday wasn’t bad.  Aaron was a little reluctant about going, but he and I walked into Paradigm with Aaron beaming.  He loved seeing Barb and Brandy, and later seeing Bryan.  He loved his friends saying, “Hey Aaron!  We missed you!”  He loved telling them about his trip to Houston.  He loved going with Bryan to help lay tile at a Paradigm house, and eating lunch at Wendy’s.  When he came home, he told me all about his day.  He showed me his receipt from Wendy’s.  He pulled out a business card from his pocket that he had gotten at a building supply store with Bryan, and he added it to his other business cards that he has confiscated over the years.  He also pulled out of his other pocket some change that he said he found on the floor at Paradigm.  He listened to my skeptical response.  He pulled out his billfold.  Finally his pockets were empty, and he went happily about his evening.

But today…..today wasn’t good.  Aaron didn’t want to go this morning.  He made that known at home by continually telling me that he wasn’t going today.  Finally he got in the van, and he was fairly pleasant on the way to Paradigm, although still saying that he didn’t want to go.  I’ve talked to him about a special meal on Friday to celebrate his first return week to Paradigm, but he told me this morning that he didn’t care about a special meal.

It’s best when Aaron is like this to just keep my affect as low as possible.  If I react strongly, then he will react even stronger.  Trust me….I have learned this.  So the less I talk, the better.  The less I react, the better.  I may tell him I’m sorry, or that I understand, but trying to lecture or to make a point is useless.  When Aaron is in his “I want things the way I want them” mood, then it’s best to be as quiet as possible.

I pulled up to Paradigm.  Aaron crossed his arms and refused to budge.  I calmly urged him to go on in and start his day.  After a short time, he opened the door and got out, but his face was a picture of real anger.  He slammed the van door, and then walked with sloping shoulders, slowly, up the sidewalk.  He looked like the weight of the world was on his young shoulders.  Then he stopped, and sat down in the rocks beside the sidewalk.  Melinda was just going in, so she stopped and talked to Aaron.  I decided to drive away as Melinda and I waved.

I guess that she talked to Aaron awhile, and then Brandy came out to talk to him.  She sat in the rocks with him, on his level, and he cried…..a sure sign of great frustration.  They went on a drive and Aaron calmed.  Bryan came back to Paradigm to pick Aaron up and take him to help him lay tile again, I assume.  Aaron enjoys helping Bryan with house jobs.  And I’m thankful for the gentle care that the staff at Paradigm gives to Aaron.  Their understanding, and the fact that they “get” Aaron, is a great relief to us. 

I hope that Aaron’s having a good day.  I suspect that he’ll come home happy again, full of talk of his day.  I don’t know what tomorrow will hold when it comes time to walk out the door again and face another day. 

Aaron’s greatest challenge in life is to learn how to process change…..how to transition from one way to another way.  Sometimes he surprises us.  In Houston, when we would tell him of our day’s plans, he would automatically say, “No!”  No to the beach…..no to the boat ride…..no to shopping, although we totally expected that.  But it was easier for Aaron to want to stay in his comfortable world, watching his movies at Andrea’s apartment and playing with her dogs. 

Yet when he went to the beach he loved it.  He loved the boat ride.  He endured the shopping.  And of course, he loved eating out!  I’ve reminded him of how he said no to things, and then how he really enjoyed those things once he did them.  This fact seems to mean nothing to Aaron now.  His mind is closed to this idea. 

He wants things the way he wants them.

And our job is to be patient, to not give in to his wants, to not lose our cool, and to ask God for lots of wisdom. 

If only Aaron wanted things the way I want them!! 

Yeah, I laughed at that, too. 

Home From the Hospital

Friday, June 19, marked a full week that Aaron had been in the hospital for low sodium and pneumonia.  He was feeling better that morning.  He still had a wicked cough, but his fever had been gone for over 36 hours and he was generally feeling much better.  In fact, the better he felt the grouchier he became.  As he felt better, he missed home more.  He missed his life and his routine.  He was more alert and aware of how abnormal this hospital life was for him.  So the better that Aaron felt, the harder he made life for those who were caring for him.  All he could talk about that morning was going home.  He didn’t like anything that anyone tried to do for him, including me.  He tolerated his chest X-Ray, his pills, and his other morning interruptions…..barely.

I saw his doctor in the hall and told her that she better put on her very thick skin when she came to see Aaron that morning.  She just laughed, and I told her I wasn’t kidding.  Aaron was grouchy, in all caps.  GROUCHY!!  And wanting one thing…..home!  So later she came in with a huge smile, and of course Aaron told her immediately that he wanted to go home.  She told him that she had good news for him, then, because home is where she said he could go.  Then he smiled along with her, for the first time that morning, and life was good again. 

Of course, when one of the aids came in a few minutes later, Aaron looked at her and said, “I don’t need you now!”  And I made him apologize, even as she just laughed and knew that Aaron was very happy to be leaving.  He just had a very blunt way of letting that fact be known.  The Occupational Therapist came in to give Aaron a shower and try to give him some shower pointers, but he actually just showed her how he showered and didn’t really listen to much of what she said.  Physical Therapy had Aaron walk up and down the stairs one time, which he willingly endured because it was just another block to check before he headed out the door.  

Soon the wheelchair containing happy Aaron was on the elevator, along with our cart full of a week of accumulated “stuff”, and before long we were in the van, waving goodbye to the nurses and driving away.  Going home at last!  But a stop at McDonalds was first as Aaron asked for a burger and fries on the way home.  We picked up lunch, and headed home to eat and to settle in to the life that Aaron had missed.  

Aaron was very, very weak.  He needed lots of help with walking, with stairs, and with the bathroom.  He was home, but life wasn’t going to be normal for some time.  He finally ate, and slowly we made it upstairs to his room.  He was so happy to be there at last.  He wanted to watch his new Tremors movie for real, on his DVD player instead of the portable player.  So he sat down in his chair, and he got his things around him fixed just right.  His clock next to his desk had to be positioned just so.  The items that he keeps near him on his bed were placed just right, with his stack of books on the corner of the bed.  On top of those was his notebook in which he kept his record of what movie chapter he was watching.  His pen was placed precisely on top of the notebook.  His back scratcher was set beside that pile of books.  His Gecko from Glenda was settled in front of his clock.  He looked around and checked to see that things were exactly as he wanted them as I stood behind him silently watching, and silently marveling at his precision with every item.

Then he saw a DVD that needed to be put on his shelf of DVDs.  He asked if I would put it there, so I leaned over and placed it at the end of the row.  He just stared at it, and I waited.  Nope.  It wasn’t right.  So I repositioned it several times before finally finding that he wanted it leaning a little at the top, and he wanted his special large rock to be placed near it so it wouldn’t slide out of place.  There!  It was finally according to Aaron’s specifications, and I was free to leave while he watched his DVD, content that all his things were in their perfect place as they should be.  At home.  Where he should be, and where he was so happy that at last he was there. 

Aaron spent much of that first weekend sleeping in his chair in the family room, his animal print blanket stretched over him.  He coughed a lot, and he tried to walk by himself, but it was very slow going.  He needed lots of help with everything.  Coming home was wonderful, but it didn’t mean that Aaron was well and strong right away.  For that reason, he was pretty disappointed.  He loved being home, but he wanted his old body back as much as he wanted his old life back.  Both would take awhile to return to normal, and despite our reminders and assurances, Aaron had some frustrations. 

 
“I’m just so tired of myself!” he blurted out on Saturday, overcome with frustration at his weak body.  That made us so sad, but we could only offer encouragement that every day would be better.  And it was.  He enjoyed visits from friends, including Rosa and her mother, Louise…..complete with pizza and balloons!  He enjoyed his room and his family room chair, watching Wheel of Fortune, and being with Jackson, and just everything.  And each day was better than the one before.  Each outing found him getting a little stronger, his stamina increasing slowly but surely.  After several days, he and I played Skip-Bo, with Aaron checking his watch to keep track of time, just like always.
 

Perhaps what he loved the very most, and what he had missed the very most while in the hospital, was his own comfy bed.  The first night back at home, when it was time for bed, I was helping him get everything ready.  Every blanket was perfectly placed, every wrinkle straightened out, the pillow put just in the right place, and then the sheets were pulled back so that he could place his snake and his skunk under the covers.  But now he had decided to add a new member to the mix.  He wanted to add the soft green frog that Andrea had sent him while he was still in the hospital.  So he rearranged Mr. Snake and Skunk in order to make room for Mr. Frog, stood back to observe and to rearrange, and finally he was satisfied. 

 
He climbed in his bed, after writing his “Time to Bed” in his log book, and I pulled his covers up around his face.  Then he smiled the sweetest smile in the world as he moved his legs back and forth in his wonderful bed that wasn’t a hospital bed.  He was the picture of utter contentment.  He pulled his arms from under the covers and held them up to me, so I leaned down and gave him a goodnight hug.

“Good night, Aaron,” I said as I hugged him.  I arranged the covers up around his face again, and there was that smile.  He looked at me for a few seconds.

“Mom?” he asked.  “Do you want to say good night twice?”

What a precious moment!  Of course I said yes, and so out of the covers came his outstretched arms.  I leaned down to hug him one more time, thankful that our Aaron was home in his own bed.  The hospital stay was scary.  His health was uncertain.  The outcome was unknown for days.  I had stretched my arms on this bed days earlier as I asked God to heal him.  Now here Aaron lay, smiling and hugging, wanting to say good night twice.  It was his way of telling me how very happy he was to be home.  I understood and I agreed.

I left Aaron to his dreams.  And I didn’t go to sleep until I thanked God that on this night, I got to say good night to Aaron in his own bed…..twice!

Has Aaron Called You a Jerk Yet?

Aaron’s been home from his hospital stay for a week now.  He’s doing well, regaining his strength and overcoming side effects of some of the strong meds that he was on.  This was Aaron’s first major hospitalization for a serious illness, and we certainly pray that it’s his last.  It was interesting to watch him in that setting, and sometimes sad, sometimes funny, and often frustrating.  Gary and I were so thankful for the very patient and understanding nurses, aids, and doctors who cared for Aaron, for caring for special Aaron at times takes special calmness…..and some thick skin as well.

We were actually amazed that Aaron handled hospital life as well as he did.  He was totally out of his element, out of his routine, and out of anything remotely familiar.  He didn’t have his bed, his blankets, his clock, his animals, and so many other things that make Aaron’s life his life.  For the first several days, Aaron spent more time sleeping than anything.  But he still had to answer questions, some of which he thought were particularly dumb.  He really didn’t like questions pertaining to his bowel habits, and sighed and mumbled a definite, “HUMPFFF!” It took him awhile to understand the annoying catheter, and let’s just say that bathroom trips for the other were very dramatic.

“Are you going to flush?” Aaron would ask immediately.  Because this is what he does at home, and these nurses were taking too long, he thought.

“Yes, we’ll get that in a minute, Aaron,” they would answer as they tried to balance very weak Aaron and keep him from falling.

“When are you flushing?” he would quickly ask again.

“We’ll do it in a second,” they replied again.

“But you need to flush!” Aaron repeated.

“We know, Aaron.  We will,” they responded.

“When are you flushing?” he asked again.

And I just sat out in the room smiling, because I know Aaron and I know that this flushing business is supposed to be done a certain way by him.  He was realizing that he couldn’t count on the nurses to do it correctly at all.  No big deal to you and me, but huge to Aaron.

He wanted some normalcy, so on the day that he was admitted and I was going home in the evening, I stood over his bed and told him that Dad was staying while I ran home.  “Mom, can you bring me my watch and my glasses?”  Of course he wanted those things.  When I returned with them, he immediately put his watch on his arm, pushed up high the way he likes it, and there it stayed for the remainder of his time there. 

He had been wanting the movie “Tremors” that he had seen in Wal-Mart.  In the midst of his fever, coughing, and pain, he asked if he could have that movie.  On Sunday I ran up to Wal-Mart nearby and got it for him along with some head phones, for Aaron MUST listen to movies with head phones.  He tried watching it right away that day, but he mostly slept through it.
 

On Sunday morning, his coupon cutting day, he remembered.  “Mom?  I just want to go home and cut coupons.”  I felt so sorry for him!  But I assured him that I would save the coupons for him. 

In his sleep one time, he said, “This is not fun.”  Again my heart hurt as I looked at him with needles and tubes and gadgets all around him, burning up with fever and coughing, trying to swallow pills when needed.  Then later that same night, he unexpectedly said, “I love you, Mom.”  For Aaron those words don’t come often or easily, so with surprise and with hidden tears I stood at his bed and welcomed his hug.  He was scared and he was so sick.  I was scared, too, but I couldn’t let him know that. 

You can barely see his watch on his arm.  🙂
 
Several times that week he looked at the clock sometime after 7:00 at night, and told us that he missed Wheel of Fortune.  It bothered him to miss his show, but he was so often sleeping soundly during that time, and Gary, who was with him then, wouldn’t awaken him for that.  I wouldn’t either, so we again assured Aaron that he could watch Wheel of Fortune when he got home.  His routine was totally a mess!

His bluntness was often embarrassing to us.  I was so very relieved that the staff understood the autism, and that they made sure to brief all the staff that came on during the shift changes.  I went down with Aaron to get another chest X-ray one morning.  The technician said, “Well hello, Aaron!  Do you remember me?  I took your X-ray yesterday.”  Aaron immediately replied, “Who cares?”  I heard it out in the hall and Aaron heard me calling his name to correct him, but the nurse standing there with me laughed. 

All the nurses and others assured me that they understood Aaron, and they truly seemed to do just that.  Yet still I would find myself apologizing and explaining, even as they told me that it was fine.  They genuinely seemed to like Aaron, even when he would call them a jerk.  Yes, he called some of them a jerk, especially when he was feeling terrible and didn’t want them messing with him.  Once I went out to the nurse’s station, and they were laughing, asking each other if they had been called a jerk yet by Aaron.  Proud Mom moment.  At least they thought it was funny.  Andrea told me that Aaron just said what lots of other patients wish they could say when they felt bad. 

There were so many moments with Aaron.  One night, late, he just wanted to go to sleep but had to take his meds and have his vitals taken, a new IV started, and so forth.  He was so tired, and when the nurse was finished he said, “You can go out of my room now.”  And one day when the sweet nurse’s aid walked in, I said, “Aaron, there’s your buddy.”  He looked at her and said, “You’re not my buddy.”  Very matter of fact, not hatefully, but he made his point. 

 
Physical therapy was interesting.  Aaron didn’t want to answer all their questions on their first visit…..questions about our house so they would know what he faced when he went home.  He sighed a lot and rolled his eyes a lot, and I fussed at him a lot.  One day he was in bed when they came to walk him up the hall, so out of bed he came and up the hall he walked.  We knew that Aaron needed to sit in the chair when he returned to his room, but he walked over to his bed, looked down at it, and told us, “I said I want here.”  Nope, Aaron.  You’re not getting your way, even if you call us jerks.

When his fever finally broke on Wednesday night, and he felt much better all day on Thursday, he was even more vocal about how frustrated he was.  Feeling better made him miss home more, and missing home more made him more vocal.  He never totally lost control, but he was more unhappy and bossy, that’s for sure.  I told the doctor on Friday morning, before she came in the room, to be sure that she had put her thick skin on.  But when she came to see Aaron, her face was all smiles.  His chest X-ray that morning was better, and she said he could go home!  YAY!!  Aaron smiled a huge smile, and was the happiest I had seen him all week. 

One of the last things he had to do was let Occupational Therapy come and give him a shower.  He was willing to do that.  In fact, he had enjoyed showers the past two days.  He did think sitting on the chair was pretty weird.  The occupational therapist was there to observe Aaron and to show him some ways that he could shower more safely.  I listened as I packed up our belongings out in the room.

“Aaron, first you need to wash your hair,” she said.

“No,” Aaron replied.  “I do it this way.”

And as he did it his way, she tried to instruct him.  But Aaron told her that he did it THIS way.  She finally told him to at least wash the top of his head, too.  My former suspicions about his showering were confirmed. 

This scenario continued as I listened and quietly laughed. 

“Aaron, now you can do this,” she would say.

“But I like doing it this way,” he would reply.

“OK, let’s do this,” she said.

“No, I do it like this,” Aaron stubbornly replied.

On and on it went, with the OT giving Aaron suggestions while Aaron would have none of it.  Nope, he was not about to change how he showered or how he dressed afterward.  I realized after several minutes that this nice lady wasn’t instructing Aaron on how to shower.  He was telling her and showing her how he showered.  She was basically helping him shower, his way.  I was thankful that she helped Aaron shower, and I was hoping that maybe something she said stuck with Aaron, but I seriously doubted it.  Aaron’s routine isn’t changed so easily, even if you are an OT.

We left the hospital with hugs from our wonderful nurse that morning and a big smile from the aid, the one who was Aaron’s buddy whether he agreed or not.  I’m sure Aaron left his mark on everyone.  I have the utmost respect for the hospital professionals who worked so well with Aaron, even when he was grumpy and at times rude. 

And was Aaron ever glad to get home!  That story will be for another time.