Category: Adult Autism

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. 



Aaron’s Hospital Stay

Aaron came home from his day group on Thursday, June 11, in his usual way, bounding in the hall door from the garage with talk of what he had done that day at Paradigm.  It was later, as I stood in the kitchen fixing supper and he sat in his family room chair, that I noticed him coughing.  It was just a dry cough, nothing major, but it was persistent.  So I leaned around the corner and asked him if he was all right, and he answered in his usual droll way that he was just fine.  But as we ate supper awhile later, Gary and I noticed that he was very slow.  A couple days earlier, on Tuesday, Aaron had four seizures.  That wasn’t unusual for him, but on Wednesday he was himself again.  To be more lethargic on Thursday was concerning to us. 

During Wheel of Fortune he wasn’t animated or excited at all.  I felt his forehead and noticed how warm he was.  Sure enough, when I took his temperature it was 102.4.  The next morning I called McConnell Air Force Base to make a same day appointment.  Aaron kept sleeping until I finally went in his room and roused him enough to take his temperature again.  It was still 102.4.  He had a very hard time waking up enough to take his morning pills, and then went right back to bed.  As I continued to check on him I became very concerned at how he couldn’t wake up, so I finally made the decision to take him to the ER.  McConnell agreed with me, so I worked to get Aaron awake enough to dress.  I then had him sit on the floor of the hallway upstairs and scoot down the stairs on his bottom.  He would scoot down one stair and fall asleep until I jostled him……then scoot down another stair and fall asleep…..all the way down the stairs. 

We slowly made it to the van, and later at the ER a male nurse helped Aaron out of the van and into a wheel chair.  Still he slept.  We got him on the exam table and he slept again.  Somehow he stood up for a chest X-ray, but he slept through the doctor’s exam, the blood draw, insertion of the IV, and even the catheter.  The doctor found an ear infection, so I thought that Aaron’s body was just fighting hard and the sleeping was his reaction to that.  I felt like we would soon leave with an antibiotic prescription, go home, and get Aaron well. 
 

 
Yet the concern on the doctor’s face as he kept coming in the exam room was raising my own concern as well.  Finally he told me that the blood work had shown Aaron’s sodium to be dangerously low.  It should be at 135-136, but Aaron’s was 121.  Then he said that Aaron would need to be admitted to the hospital to address the sodium issue, and to find out what else was going on with him.  My mind was whirling as I called Gary and as we tried to decide if Aaron would stay at St. Teresa Hospital or go elsewhere, although that decision was made for us by insurance.  We would stay at St. Teresa.  It wasn’t long before we were on an elevator headed up to the small ICU unit, my mind still trying to adjust to all this.  I looked down at my very sick son and wondered about the “what else” that the ER doctor had mentioned.  What else was going on inside his body? 

 
There Aaron lay, all hooked up to monitors and tubes, his body struggling against that unknown something that was making him so sick.  He tried hard to wake up enough to answer nurse’s and doctor’s questions.  He sometimes showed his definite personality, like when the nurse asked him a question about his bowel habits.  He gave her a rather disgusted look and just answered with a “Hhmmpf!”  When Gary was there, and I left later that evening to run home, Aaron asked me to bring him his watch and his glasses.  He didn’t wear his glasses a lot during those first few days, but he put his watch on his arm right away, pushed way up the way he likes it.  It was a piece of normalcy in this crazy place in which he found himself. 

 
Over the weekend, when friends came to visit, Aaron would cry.  He showed emotion that was rare for him.  He told me later that he was sad.  I told him that we understood, but I didn’t tell him about my own sadness.  Or about those icy fingers of fear that were trying to grab at me.  It was not only sadness but fear I was feeling as I watched the blood draws…..the strong antibiotics flowing through the IV into Aaron’s body…..the fevers that sometimes rose to 104.5……the CAT scan…..the X-rays…..the spinal tap……the kidney specialist and the infectious disease doctor…..the testing for West Nile and tick borne disease…..the low sodium issue. 

 
Early on Saturday morning, as I have done many times in the past during stressful times, I asked God to give me a special verse.  I asked Him to speak to me in the way that I needed at this time.  There in that hospital room, with Aaron sleeping nearby, God gave me Ecclesiastes 11:5:  “As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything.”  That was it!  I didn’t know what was going on here with Aaron.  I didn’t know the work of God but I do know God.  I know that He loves us and I know that He has a work that He is accomplishing.  I know that I can TRUST Him, regardless of what else I don’t know. 

It was very hard to watch Aaron suffer.  Hard to see the pain in his face when he coughed….the struggle to deeply breathe and to talk……the pain of needles and tests.  It was easy for me to let fear take over as I helplessly watched our Aaron and wondered still about the “what else” that was so elusive to find in his body.  Soon another principle from scripture came to my heart.  “In everything, give thanks.”  I went home one evening while Gary sat with Aaron, and I knelt by Aaron’s empty bed in his bedroom.  His stuffed snake and skunk were still in the bed where he had left them.  I stretched my arms over his animal print blanket and I asked God to please heal our son.  I told God that I didn’t know about this work that He was doing, but I did trust Him.  And I thanked Him for this time.  That kind of thankfulness takes great trust in the One whom I was thanking, for sure, because I hurt for Aaron so deeply.  But I also know God and I know that He can be trusted.

It was a turning point for me.  My mother heart still hurt deeply all through that week in the hospital.  One night, with eyes closed, Aaron said, “This is not fun.”  There went my tears.  And later, eyes still closed, he said, “I love you, Mom.”  I leaned over his bed and he got as big a hug as I could give him.  But I purposely stood there and voiced thankfulness to God, hard as it was, for this work that He was doing and that I didn’t understand. 

 
Aaron’s chest X-ray finally showed pneumonia in his right lung.  It was determined that he had Aspiration Pneumonia.  Apparently, he aspirated some saliva during his seizures that previous week.  He responded to a new antibiotic, was moved out of ICU to a private room, began walking with the help of physical therapy, and was soon clamoring to come home.  I don’t know who had the bigger smile, Aaron or his doctor, when he was finally told that he could go home.  On Friday, a week after being admitted to the hospital, he was wheeled out to our van and we took off for home…..after picking up his choice of McDonalds for lunch on the way.  He is recovering his strength and his spirit, and some grouchiness, too. 

There is more to write about this experience.  About how Aaron’s autism affected his hospital stay, and about his tender return home to his world and his routine.

We’re so thankful for this outcome, but if it had been different, I pray that we would still be thankful.  Thankful for the work of God who makes everything, even when don’t know or understand His work.  When it’s all said and done, there is no better place to be than in His will as we watch His work and trust in Him. 

 

Only If It’s Friday!

I just have to quickly share with you a perfect autism moment with Aaron that I had yesterday.  One of the characteristics of autism that Aaron sometimes displays is that he doesn’t always understand jokes or irony.  We had the funniest display of this yesterday that I’ve seen in a long time. 

He stayed home yesterday because we had an appointment with his state insurance representative.  I decided to make a quick trip to Dillon’s, and of course Aaron went with me.  I told him that he could have his favorite Cheddar Pasta Salad for lunch, so he was very happy as we walked into the store.  Aaron always gets a large container, by the way.  That’s important to remember.  Oh, and it’s also important to remember that yesterday was Friday.

We waited for awhile at the deli counter before an employee walked up behind us on her way to help us.  Aaron was a tad impatient at having to wait, and was just ready to order his large salad.  As the lady asked what we wanted, Aaron ordered in his usual way.

“Can I have a large Cheddar Pasta Salad?” he asked. 

“Only if it’s FRIDAY!” she answered Aaron, with a big smile as she enjoyed her little joke.

And Aaron just stared at her.  He didn’t smile.  He didn’t laugh.  He only stared at her as if she had three eyes.

I knew exactly what he was thinking.  He was thinking that this woman was dumb.  Of course it’s Friday, he thought.  What is she talking about and why is she smiling at what she said?  It’s just dumb.

Then Aaron gave a little grunt because he suddenly realized that something was expected of him, but he didn’t know exactly what that was.  So he gave a small grunt of acknowledgement as I chuckled and said something about how funny that nice lady was.  What I really wanted to do was bend over and begin a loud belly laugh, but I knew that would only frustrate Aaron further, so I resisted.  And the look on the poor woman’s face was pretty priceless, although I felt a little sorry for her. 

Then it got even better.  There were no large containers on this Friday, so the lady said that she would fill two medium containers.  Oh boy.

“But I want a large,” Aaron told her.

I then told Aaron that two of the medium containers equaled one of the large containers. 

The nice lady began to fill a medium container.

“But I want a large,” Aaron repeated.

“Well, we don’t have a large but I’ll fill two mediums,” the lady repeated.

Aaron watched her closely as she filled the first medium container.

“I wanted a large,” Aaron said.

“Aaron,” I said, “two mediums are the same as one large.”  I then pointed to the sample containers on display to prove my point.

“I can’t have a large?” Aaron asked.

Sigh.

“Look, Aaron,” I said.  “You’re getting the same amount in the two mediums as you would get in a large.  Maybe even more!”

He was quiet as the worker finished filling the second medium container.  She handed them to us and wished us a happy day, saying nothing that time about it being Friday.  Smart woman.

I put the two medium containers in our cart. 

“So she didn’t have a large?” Aaron asked.

Sigh.

We walked off as I expounded on the wonderful qualities of getting two medium containers.

“But they didn’t have a large container?” Aaron asked.

I quit counting how many times during that short shopping trip that Aaron repeated, “She didn’t have a large container?”

Up one aisle and down another, Aaron was trying to process having to eat out of two medium containers instead of one large.  Not even getting a bag of Starburst jelly beans deterred him from talking about the absence of his usual large container. 

In this one little excursion to Dillon’s, I saw the complexities and the rigidity of autism in two distinct ways.  It doesn’t matter how long I live with Aaron, it’s always amazing to see how his mind works.  Plus it’s often downright hilarious.

And not “Only if it’s FRIDAY!”  HaHaHa!

It’s every day with Aaron!

 

Lights On. Lights Off.

There is something laying on the floor of our garage right now.  It’s a baggie that contains some coins….some coins that Aaron needed to take to his day group today.  The bag is on the floor of the garage because Aaron put it there.  Well, he didn’t just put it there.  He threw the bag down on the floor.  He threw the bag down on the floor because he was angry.  He was angry because he didn’t want to go to Paradigm today.  He didn’t want to go to Paradigm today because of something that happened there on Friday.  He didn’t have to go yesterday because of a doctor appointment and then a fun day with me…..so he doesn’t want to go today, either.  Are you following me?

It’s how we have to follow Aaron.  Living with Aaron means living with autism, and living with autism means that we often follow Aaron as he goes down one trail, switches to another, and back tracks to the first one, but is soon off on a wild tangent, and off we go.  Living with Aaron and living with autism means that we must understand, as best we can, the things that Aaron can’t easily or sometimes ever express.  At times it’s a fascinating journey.  At times it’s a funny journey.  And at other times, it’s a very frustrating journey.  It’s really wild when all those emotions are mixed up into one ball.  Boy, can we bounce from one to the other!

Anyway, back to the bag of coins on our garage floor.  Aaron was awake a little after 5:00 this morning.  I heard him go to the bathroom, but he never went back to sleep.  He was in the kitchen watching me scramble Gary’s eggs well before 6:00.  He ate some sausage and I took his coffee to his room.  He came several times and stood behind my chair as I had my morning quiet time, sometimes talking and sometimes just staring.  He showered and took his pills.  And just under the current of his swirling mind, I knew what was there.  He didn’t want to go to Paradigm.  But when he saw that I was really going forward with our morning routine, like cleaning his glasses and handing him his wallet, he was not happy anymore.  On the way to the van, he turned and threw the bag of coins on the floor.  He left them there as we got into the van, and I am leaving them there for him to pick up when he comes home.  But he went to Paradigm, was met by the manager who rubbed his back and calmed him down (I hope), and hopefully will come home with happy stories.  And he will pick up the bag in the garage, because he needs to do that.  It’s a small lesson, but a lesson regardless.
 

Sometimes we don’t necessarily understand what makes Aaron do certain things, but we know that these actions are set in stone.  We are fighting a losing battle to try to change them.  Like his sausage this morning.  Aaron got his own silverware because he knew that Mom wouldn’t do it correctly.  I knew what he was thinking as he reached into the drawer and pulled out his fork but also a knife and a spoon.  Who needs a spoon for eating sausage?  Aaron does.  There’s no need to make a big deal about it or try to make him put it back.  Why make it an issue?

And the family room lights.  I don’t turn them on in the morning because we’re not sitting in there and so we don’t need the lights on, right?  But every time Aaron walks through that room, headed for the kitchen, he flips the lights on.  I flip them off at the first opportunity.  He flips them back on.  Lights on.  Lights off.

This morning he walked into the kitchen.  Lights on.

I soon took his coffee upstairs.  Lights off.

He followed behind me.  Lights on.

I came back downstairs.  Lights off.

He came behind me again.  Lights on.

I carried my own things upstairs.  Lights off.

He finished taking his pills and then came upstairs.  Lights on.

Sigh.

On the days that he is home and wants to eat lunch, he will eat only if it’s 12:00 or shortly after.  He will not eat at any time before 12:00.  Not 11:48.  Not 11:55.  Not even 11:59!!!!  And if I ask him what time he wants to eat, he replies, “At the time for lunch!”  As if Mom is a little thick headed, you know.

One day recently he said, “Mom, I’m sleepy.  I think I’ll take a nap at 12:00.”

I said, mistakenly, “Well, it’s almost 12:00 now.  You could go ahead and lay down.”

“But it’s 11:53!!!” he exclaimed.  “It’s not 12:00!”

Well, of course.  Whatever was I thinking?!

Wheel of Fortune is another one.  It starts at 6:30, so Aaron has decided that he will turn the television on at 6:28.  Again, not at 6:25 or 6:26 or even 6:27.  No.  Only….ONLY……6:28.  He will stand in front of the TV, literally staring at the clock, until it is SIX…TWENTY…..EIGHT!!!! 

It actually makes Gary and me smile. 

Movie credits.  Oh yes, movie credits.  When Aaron watches a movie in his room, he watches the entire movie.  But to Aaron, the entire movie means from the moment the DVD begins until the moment the DVD is over…..completely over.  That means watching the credits…..every single bit of the credits, until there are no more credits to watch.  He stares at them intently, too. 

 
So yesterday, after Aaron’s doctor appointment and after eating lunch at Abuelo’s, we went to see San Andreas.  He saw it at the theater on Friday, but he really wanted to see it with me.  Yesterday worked out perfectly for that.  For one reason, the theater wasn’t full at all and so I wasn’t as stressed about Aaron’s noises and rubbing his hands together when he got excited.  And this is a VERY exciting movie.  We had a good time, and when the movie was over I could tell that Aaron didn’t want to get up.  Why? 

Really?  Surely you know.  The credits!!  Aaron would have gotten up if I had insisted, but I knew that watching San Andreas in the way that mattered to Aaron meant watching it to the bitter end…..which meant to the very long, last credit.  Everyone had left the theater, and the cleaning crew stood in the back waiting on us to be finished, but Aaron and I did it.  We watched every single line of every single credit for every single miniscule part of San Andreas.  Aaron put his hands on the back of the seat in front of him, enthralled at getting to watch big screen credits all the way to the end.

 
 
This is what we often do as parents of Aaron, and as we live with autism.  I entered Aaron’s world at that moment.  It was actually funny and endearing.  We left the theater laughing, and I laughed even more when Aaron bent over as he rubbed his hands together furiously, asking the ticket taker why San Andreas was “fictinous,” as Aaron says.  The stiff, unsmiling ticket taker was rather put out at this odd situation and made some curt comment, which totally didn’t faze Aaron.  That poor guy missed out on a wonderful opportunity.

I’m learning more and more to enjoy those opportunities to enter Aaron’s mind and to follow him on his paths. I am blessed to partake of Aaron’s world on most days, but there are many times when it’s hard and frustrating.  Which brings me back to the bag on the garage floor.  Hopefully, as he picks the bag up off the floor, Aaron will talk to me about what was really bothering him.  Hopefully, he will learn that he needs to correct his own wrong actions.  Until the next time he takes off down that trail of frustration, but we’ll deal with that as well.

Lights on.

Lights off.