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.

 

 

Still Our Sweetie Poo

I got one of those phone calls yesterday that I don’t like to receive.  It was Barb, from Paradigm, trying to tell me about an incident with Aaron.  It was hard to hear her, though, because she put it on speaker and I could hear Aaron in the background.  He was yelling as he tried to explain his story, and he was crying, and no one had to tell me that he had just had a meltdown.  My heart sank.  It’s been awhile since we’ve seen this with Aaron.  I felt drained when I got off the phone, and I wasn’t even there when Aaron lost it.  It’s just very discouraging to feel like things are going along so well, and then BAM, he hits that wall again. 

In his frustration, he broke his watch and he broke his brand new two day old glasses.  This is very typical of Aaron when he gets that upset.  He will break something that’s important to him, and then afterwards he’s just eaten up with remorse.  The remorse comes from all of his behaviors when he loses his temper, but he knows that breaking things comes with repercussions.  He won’t get a new watch right away.  He didn’t know if his new glasses could be fixed. 

 

The repercussions with people’s hearts is an area that he is not quiet adept at understanding.  He’s doing better with empathy as he’s gotten older, but he is usually very narcissistic and only thinks of himself when he is in a rage.  I guess many of us are that way when our emotions take control, but Aaron is often that way even when he is even keeled.  Thinking of others and what they are feeling has been long in coming for Aaron’s autistic mind.  He’s getting there, very slowly, sometimes more than others.  For instance, not long ago he found out that Andrea had a migraine.  The day that she and I were talking on the phone and she mentioned it, Aaron was frustrated that our phone call was taking my time away from him.  I chided him when I got off the phone about how uncaring he seemed.   The next day when she called, he said to me, “Tell Andrea I cared for her migraine!”  He was very pleased with himself that he cared, because even he knows how hard it is for him to feel that emotion, and because he felt guilty that he had not felt it at first for his sister.

He came home yesterday, face and eyes all red from crying.  He told me what had happened, so we discussed it as much as I felt that he could handle.  He lets me know when he has had enough.  Barb and I talked privately when Aaron was up in his room, and Melinda and I texted.  I felt like I had a good grasp of what had happened, although part of it was still fuzzy.  That’s why I tried to talk to Aaron again after Wheel of Fortune was over, but he did not want to talk about it further.  The book was closed, in his mind. 

I was almost asleep last night, at 11:30, when I heard our monitor on the nightstand beeping.  It meant that Aaron had turned his unit off in his room.  And it wasn’t long before our bedroom door opened and Aaron strode in to tell me that he had turned his monitor off and he had no intention of turning it back on.  There!

“Oh boy,” I thought.  “Here we go.”

Aaron has these residual effects from his behaviors…..effects that show up hours after the incident is over and hours after we have talked about it.  I followed him to his room, noticing his agitation.  He turned and told me that I was mean, that Dad was nicer, etc., etc.  I knew that my second conversation with Aaron was the cause of this, but I couldn’t take it back.  He thought I didn’t believe his version of the story….that I would make him leave Paradigm……and on and on.  And he assured me once again that he was NOT turning on his monitor.  That was the biggest sign of his rebellion that he could come up with at the moment. 

I left his room frustrated, and Aaron was frustrated, and the monitor stayed off all night.  This morning, I left Aaron alone when he got up.  Even when he stood staring at me silently, I did not speak to him.  I poured his coffee and carried it upstairs.  I got myself ready and I opened my bedroom door, and finally he walked in and told me that he was not going to Paradigm today.  I knew that was coming, so I asked him if he would go on Monday and he gave an exuberant yes. 

So many of my decisions at these times are uncertain.  Is it right to not make him go today to his group?  Do I still get him his Friday goody bag?   Was this outburst because of his new seizure drug….the one that can cause anger?  Do I take him off this drug?  Or do I wait awhile longer to give it more time? 

Well, I didn’t make Aaron go to Paradigm.  I know this is his typical response to such stressful situations, and I know that he does need time to emotionally recover and to sort it all out in his head.  His big, impulsive hug for me later showed me how thankful he was that I let him have some time and space today.  I still don’t know about the new seizure drug and what to do there, but I think I’ll give it some more time.  I think.  I did not get him his Friday goody bag.  He hasn’t even asked about it because he knows that he really messed up.  My mother heart wants to take care of him…..to blame the autism….to quote the professionals about his emotional deficits.  But I know he also needs consequences, and so the goody bag will not happen today.

I did take his glasses to the optometry shop.  “Wow!” the technician said.  “He sure did a number on them.”  I didn’t have Aaron with me because I wanted to explain what had happened, but not in front of Aaron. 

“Yes,” I agreed.  And I wanted to add, “You should see the number he’s done on my heart, and on the hearts of others.”  But of course I didn’t say that. 

By some miracle, the young man brought Aaron’s glasses back to me later, all fixed and ready for Aaron to wear again.  I wish it would be as easy to fix the situation of yesterday, but that will take more time. 

Later, Aaron and I took Jackson for a walk around our neighborhood circle.  It’s a beautiful day, perfect for a walk.  When we got home, Aaron quickly grabbed his mulch bucket and situated himself out in the flower bed for some mulch time.  He stayed there for nearly an hour, relaxing and sorting out his thoughts with each little piece of mulch that he broke.  It’s time that he needed…..quiet, peaceful, reflective time for him. 

 

Wouldn’t it be wonderful if mulch would cure autism?  Or if mulch time would give me all the patience and wisdom that I need?  I would say, “Scoot over, Aaron!  Make room for me!  Will you share your bucket?”

I know every parent of autistic children can understand how helpless I sometimes feel.  How embarrassed at my son’s behavior.  How frustrated and then sad at his response. 

Then I think of Barb, who loves Aaron and who said, “Tomorrow’s a new day.  We’ll just put this behind us and go forward.”

And Melinda, who also loves Aaron, and who said, “Aaron informed me that I am NOT his sweetie poo anymore!  Well, he is still my sweetie poo.”

That makes me smile, and it makes me thankful for those that work with Aaron and love him even on the bad days.

We will, and we do, move forward.  Today Aaron said, “Mom, I’ll turn my monitor on tonight.”  It’s his way of telling me that he’s better now, and that he is ok with me…..mean old Mom of last night. 

Yep, it’s a new day and we will go forward.  And I just hope Aaron knows how many people cared for him when he messed up.

He’s still our sweetie poo!

 

 

Lessons From the Fire Ants

We just returned from a trip to Houston to see our daughter, Andrea, with a side trip to Dallas to see our son, Andrew, in an NHRA race there.   Oh, and I mustn’t forget to mention that we also enjoyed seeing our Granddogs, Darcy and Oakley.  Hey, it’s the closest I have to grandkids right now, so humor me.  In fact, the story I’m about to share involves these cute little doggies, in a way.

 

On our first evening there we headed right away to the dog park with Andrea so that Darcy and Oakley could have some outdoor play time before the park closed for the night.  Darcy and Oakley ran and jumped and rolled, and spent lots of time romping and splashing in the water.  They were so much fun to watch.  Soon we meandered off the gravel path and stood in the cool thick grass, talking to another dog owner and enjoying the happy dogs.  I had worn sandals instead of tennis shoes, and the grass felt damp and pleasant on my feet in the humid air. 

As we stood there talking, I noticed a faint stinging on my feet……especially my left foot.  I moved my foot a little, but the stinging persisted.  I thought that this grass must be pricklier than it seemed at first.  Before long, the stinging was increasing.  I again wondered why, but couldn’t see a reason as I looked down at my foot buried in the thick grass.  Finally, I was uncomfortable enough to raise my left foot up out of the grass……..and to my surprise, I saw tiny little ants crawling all over my foot.  The same was true of my right foot, though not as many ants had found their way to that side.  

Fire ants!  The stinging wasn’t coming from irritating grass, but from tiny fire ants.  I shook as many off as I could, and then went to the path, where I took my sandals off and continued to brush little ants off as quickly as I could.  They were between my toes, going up my legs, and caught in the folds and crevices of my sandals, as well.  Yuck!!!  When I was convinced that I had rid my feet and sandals of these attackers, I put my sandals back on and we continued to walk around the park.  Yet every now and then I would feel another sting, and would look down to find one miniature ant still on my foot.  

It was hard to believe that those sharp stings could come from such little creatures, but those tiny guys can pack a wallop.  I hadn’t been stung by fire ants since we lived in southern Alabama, when Gary was in flight school at Fort Rucker, over 30 years ago.   It was a memory I was wishing not to re-live.  However, soon the stinging sensation was gone, and other than a very few little dots on my feet, I was none the worse for the experience.

Or so I thought……and hoped.  Over the next few days, my foot has increasingly shown the effects of those small prickly bites.  The little dots on my feet have turned into larger and larger bumps.  They sometimes itch.  They sometimes sting.  And they look very large and ugly today…….like pimples on my feet and even between my toes.  I just thought I was escaping that experience largely unscathed, but not so.  I am reminded of those fire ants and their damage, both in the discomfort I feel and the unpleasant sight I see every time I look down at my feet.

Isn’t this just how sin is in our lives?  We set out on a path that is safe and protected as we follow God and obey His commands.  Soon, though, it’s so easy to veer off that path into a life that isn’t what He desires.  It feels good, though, just like that cool grass felt good to my feet.  What could be so wrong about this little diversion?  Isn’t everyone else doing this?  Come on!  Lighten up!  Don’t be so serious and intolerant.

Then we feel the first little sting, but we ignore it.  A few more stings…..and maybe we look around a little to see what’s causing that feeling, but we choose to disregard it.  Nothing appears very alarming, anyway.  Over time, though, the little stings become increasingly painful and more of our life is affected by the discomfort caused by our decisions.  And hopefully, we run……we run away as fast as we can from our sin.  We change our direction, we confess to the Lord our wrong, and we set out on the right path once more.

Yet sadly, even though we are forgiven, we often will bear the consequences of our sin……sometimes for the rest of our lives.  At first it may not seem like our sin is any big deal, but it is.  Like Moses told the people of Israel in Numbers 32:23, “Be sure your sin will find you out.”  In other words, you will suffer for your sin.  Sorry.  I didn’t say that.  God did.  The longer we stand in that grass and let the ants crawl on us, the more we will bear the results of our choices.  Days, months, even years later, the choices we made yesterday can……and often does……greatly affect us and those we love.  

Thank God for His grace, and His redemption, and His forgiveness.  Thank God that He doesn’t hold our sin over our heads and beat us up with it every day.  Thank God for His love, and for His patience in directing us back to the right path.

Yet what if I hadn’t gone off into the grass in the beginning?  What if I had worn the right shoes?  What if I had run away quickly when I felt the first sting?  Then today I wouldn’t be looking down at these painful, ugly bumps on my feet.  My story today would have been very different……much less harmful to me, for sure.

Don’t veer off God’s path for your life by walking into what feels good and looks great.  Don’t be wearing the wrong shoes.  Flee temptation, as Paul said to do.  Put on your running shoes!  Don’t linger in sin, enjoying the moment until they become many moments.  Don’t ignore God’s conviction in your heart.  Don’t let the stings of long-term sin leave you with irreparable damage.  God will forgive, but He won’t necessarily take away the natural consequences of our willful actions.  

Painful lessons.  May we all use wisdom in where we walk.