Category: Asperger’s Syndrome

Tired of Love?

Some of you have been asking about how Aaron is doing.  We don’t really know how his sodium levels are holding right now.  We need to have more blood work done to find that out.  He’s drinking less water than he used to drink, but probably still more than the doctor would want him to have.  We’re just doing the best we can do there.  Let’s just say that he does NOT take kindly to having his fluids restricted.  Some days and moments are harder than others.  Much of it depends on his mood.  Much of everything depends on his mood, actually.

One day his friend at Paradigm gave Aaron some food.  I was a little leery of this idea, so I told Aaron that he probably shouldn’t be eating food offered to him like that. 

“You’re saying I can’t have WATER, and now you’re saying I can’t have – like – FOOD?!” he exclaimed.

He lives a tough life, let me tell you.  A very tough life.

Aaron loves listening to CDs when we drive to his day group, unless he’s having a grouchy day.  Then he punishes me by saying he doesn’t want to listen to any music.  Anyway, we had listened to an instrumental CD and I guess it wasn’t his favorite.  The next day he said, “Will you get a CD where they’re singing in WORDS?”  Ok, ok.  So we I picked out an Olivia Newton John CD, one where she’s singing her old songs.  Aaron listened quietly.

Finally he said, “Mom, I noticed something.  She just sings about love.”

“Is that OK?” I asked.

“Well, it’s weird,” he answered.  “Music companies today don’t just sing about love.”

He’s right about that.

The next day we turned on the same CD, and it began where we had turned it off the day before.  Again, Aaron listened quietly for a couple minutes.  Then he flatly said, “I’m getting tired of love.”

I did laugh out loud at that one.  Come on, Aaron.  We never get tired of love! 

So to finish this, I’ll just show you some pictures of Aaron and of how he loves, and IS loved, every day.  And of how he’s funny, too!

He found a turtle down in the grass in our back yard, so Gary helped him turn it loose in the lake behind our house.  Aaron was so happy with that turtle and didn’t want to give him up, but he was happy to know that the turtle was very happy to finally go to his home. 

 

We went to see The Minions with Rosa and her mom, Louise.  Rosa asked her mom if she could go to a movie with Aaron, which was so sweet.  And the loudest I heard Rosa laugh was when they were walking out through the lobby and Rosa took a drink of her Diet Coke.  Aaron loudly said, “Is that BEER??!!”  And they laughed and laughed, while Aaron rubbed his hands together. 
 

 

Aaron went with me to get dog food at the vet.  Aaron loves getting to see the resident cat, Kato.  Patient, patient Kato. 

 

Aaron has offered to help me clean garden veggies several times.

 

And he thinks it’s so funny to always do this at least once when he eats a peach.

 

I think it’s funny that he often wears his socks with the heel part on top, no matter how many times I tell him that the gray part belongs on his heel.  He totally doesn’t care.

 

He does care about testing plants when we go into different buildings.  He showed me this piece of a leaf after we left the doctor’s office.  He now knows that his test proved that the plant is real.  Sigh.

 

We have eaten out several times on doctor visit days, which is really why Aaron goes with me on doctor visit days.  He doesn’t care at all about seeing the doctor.  It’s his restaurant of choice that fills his thoughts. 

Aaron thought it was funny to be in a huge booth, far apart.
 

One of his friends gave him a Krispie Kreme hat, so Aaron proudly wore it for a short time.  Hats are not his favorite.  Neither are donuts.  Can you believe that?

 

Life with Aaron is never dull.  And he’s always loved, even when he’s tired of love.  

And when he’s not always easy to love.  That happens, too.  I have a picture of his broken watch, but that will be for another time.

Today we sing about love.

 

 

 

Painting Aaron’s Room

This past Saturday was a big day for Aaron.  That’s the day that we had his room painted.  The popcorn ceiling was removed and then the ceiling was painted; his walls were repaired and painted; and then the hall bathroom was painted as well.  “Us kid’s bathroom,” as Aaron calls it.  It’s fun to have a room painted, especially when you’re not doing it yourself.  We hired our neighbor’s friend, Rudy, to do the job for us. 

But for Aaron, it’s not fun to have a room painted…..especially when the room is his room.  He doesn’t care who is doing it.  He just doesn’t like all the ways that it affects him. Of course, we know this about Aaron.  That’s why we started preparing him for this big event a week before the job was to be started.  As we were eating on that Sunday, we told him with excitement that his room would be painted that following weekend.  We exhibited the same enthusiasm as we told him that we would need to move all of his furniture, except for his bed, out of his room before the painter came on Saturday.  

Aaron tilted his head as he often does and was silent as he thought about what we had just told him.  He was staring out ahead, but we knew that in his head things were happening.  You could almost hear the wheels turning as Gary and I waited with apprehension for his reaction.  Finally he spoke.

“Are you moving my book shelf with all my DVDs on it?” he asked.

We told him that we were going to move it.

“They need to be in order!” he told us.  “You’re not taking them off, are you?”

We assured him that we could move the book case without removing his DVDs……DVDs that are in a particular order and should not be disturbed by us mere mortal parents who have no idea of the importance of that order. 

On the next day, Monday, during supper again, Aaron asked about having his room painted.  “You’re not messing up my DVDs, are you?” he once again asked.  And we once again assured him that we would not mess them up.

“Well, can I play my computer?  Will it be messed up?” he anxiously asked us.  So we assured him that his computer would not be messed up and that he would be able to play it again.

“After the room is painted, can I hang my calendar?” he wanted to know. 

We told him that he could hang his calendar after we decided where all his new wall art was going to be hung…..but yes, he would definitely have his calendar.  The smallest things are huge to him.  There is no such thing as a small change in Aaron’s life.

And later that night, we heard the question again.  “So you’re moving my book shelf and DVDs?  You won’t mess them up, will you?”  This is when I began praying that we wouldn’t tip the book case over and spill the DVDs.  I couldn’t even imagine that scene.

On Tuesday, Aaron looked at us with worry as we told him that we would move his things out of his room on Friday night. “Can I play my computer just one last time before we paint my room?” he questioned.  He sounded like he was making his dying wish, for heaven’s sake!  This was just Tuesday, but he was wanting to be sure that on Friday night he could play it just before we moved it. 

Over the next several days, he continued to ask questions and to try to adjust to this huge coming disruption.  The big move on Friday evening went smoothly.  Gary even hooked Aaron’s computer up in Andrew’s room, still on Aaron’s own desk, and he was one happy camper…..despite the change.

We then broke the news to him that he would be sleeping in Andrea’s bed on that night.  He was very skeptical about this prospect.  I praised her bed and extolled all of its comfort and convenience, but he wasn’t convinced.  He said it wasn’t the same size as his, and I told him it was.  He said his sheets didn’t fit on it as well as I took her sheets off and put his on, but I told him they did.  I shot down all of his arguments as we placed his covers on the bed in their particular order that he likes and as we placed his snake, skunk, and frog in their certain places.

I got him tucked in, turned the light off, and said one last good-night as I closed the door.  I went to my room, but it wasn’t long at all before I heard that he was out of bed.  I opened his door and found him sitting on the bed, signing his bedtime log.  Of course.  It’s important for him to record the time he goes to bed and the time he gets up.  Once that was done, I tucked him in again and turned off the light.  He was in bed once again.

I was washing my face when I heard the knock on our bedroom door.  “Mom?” I heard Aaron ask.  “Can we watch Wheel of Fortune tomorrow?” 

Yes, Aaron, we’ll watch Wheel of Fortune tomorrow.  Now go to bed.

“Well, I don’t really want to sleep in Andrea’s bed.”

Go to bed, Aaron.

So he went to bed, where I tucked him in once again.

It didn’t take long until there was another knock on our door. 

“Is it going to rain?” he wanted to know.  I told him I didn’t think so.  “I mean, like a storm?” he asked.

No, Aaron, it’s not going to storm.  Go to bed.

He went to bed again.

Soon I heard it.  Thump, thump, thump.  Aaron was going down the stairs.  He was back upstairs before long, where he told me that he went downstairs to say something to Gary…..anything to keep from getting in bed. 

Aaron…..Go.  To.  Bed.  He did.  And he stayed, thankfully.

His report the next morning:  “I didn’t sleep well.  It’s not like my bed where the covers don’t move a lot.”  I didn’t have the energy at that point to ask him to explain that one.

Aaron handled the actual paint day very well.  He stayed busy on the computer, talking to us, going outside to sit by the garden and relax in the leaves and sticks, and generally ignoring what was happening in his room.  He showed no excitement or interest at all.  His biggest concern was his shower that night.  He couldn’t use “us kid’s bathroom” since it was still wet.

“It’s 8:00,” he said.  “I need to shower.”  His shower is at 8:00 every night, or shortly thereafter.  NEVER before 8:00.  Just so you know.  We do.

I took his towel and pajamas into our bathroom, which once again didn’t thrill Aaron.  “I wish this man wasn’t here,” he lamented.  “And I wish I was back in my room.”

Well, the next night he WAS back in his room.  I was worried because Gary wanted to move Aaron’s furniture around.  I just knew that this would tip the boat, and be too much change for Aaron.  We used our excited voices when we showed it to him.  All he cared about was:  were his DVDs messed up; was his computer going to work there: and when could he hang his calendar.  He was pretty unimpressed with everything else, and pretty irritated as we showed him some new things about his room. 

“You guys think I don’t know anything about my room!” he impatiently told us.  So we kept quiet as he went on playing his computer game. The amazing thing was that he handled the new room with ease.  That was a surprise for me!  He even slept in his bed that night, happily, despite the fact that his nightstand holding his lamp and his clock were on the opposite side from where they usually are.  He’s also putting his Handy Answer book on his night stand shelf instead of on the floor like he prefers, and tried to do the first day.  Progress!!
 

 
He followed me as I carried his coffee upstairs to his room on Monday morning. “Can we put the coffee on the shelf like we used to before that man came over?” he asked.  He refers to the painter, Rudy, as “that man.”  And he says it with an element of disgust, so it shows me that he really is somewhat frustrated by all of this change.  And he blames it on our painter, because Aaron has to blame someone for his discomfort.

Aaron’s room being painted is a huge improvement, though he doesn’t seem to care one bit about it.  But just as huge is how well he did with this interruption to his routine, and how easily he has adjusted to his new room. 

Also huge:  his DVDs didn’t get one bit messed up.  Thank you, Lord!!!

 

 

 

 

Embarrassments

We all know the famous Browning poem, “How Do I Love Thee?”  Well, I have some thoughts about Aaron, but the title would be “How Do I Embarrass Thee?” As in, how does Aaron embarrass me?  Being a southern mama, I would add, “Bless his heart.”  And you can take that any way you want.  We southern girls certainly know how to do that. 

            You know I love Aaron with all of my heart.

            You know I love Aaron, every part.

            But oh, how embarrassing he can be.

            So today I have a story of three.

OK, I’m no Browning……bless my heart. 

Anyway, today was dental cleaning day for Aaron, so we took off this morning for our beautiful drive north through the country.  We drove up 135th street to 53rd, for you local folk, as we headed to the town of Maize and to our dentist’s office there.  Aaron was enjoying his day off as we drove by cows and horses and goats and one field of critters that I couldn’t identify.  He was really loving the oldies CD that we listened to, and hearing the fact that these were songs from my high school days. 

Aaron didn’t have time to enjoy the waiting room where he likes to talk to Lee, the receptionist.  He was immediately called back for his cleaning.  I had urged him to be patient and polite, character traits that run short for him sometimes in the dentist’s chair.  And when he walked out about 40 minutes later, I heard him before I saw him.

“Mom!” he said.  I could tell just from the sound of his voice that he was exasperated.  “Let’s go now!” he demanded as he walked into the waiting room.  I could tell from the wild look in his eyes that he was upset.  Oh dear.  So as I checked out and made his new appointment, the hygienist was able to whisper that he was more upset than usual today.  He even told her to shut up at one point…..or maybe more than one point.  He was just rude and belligerent to her.  He doesn’t like the cleanings…..he doesn’t like the feel of it and the time it takes……and he doesn’t like being told over and over to hold his mouth open and to loosen his steel-like lower lip.  And of all things, we go every two months to the dentist for cleanings because of how Aaron doesn’t brush well enough. 

I was embarrassed.  I know the staff there understands as best they can, but it’s hard to be the mom at that moment….no matter how old my “child” is.  I know that I will always be dealing with these red-faced moments, and I know there is a legitimate reason why, but it’s still just….embarrassing.  As Aaron and I drove away, I gave him a lecture.  He doesn’t do lectures, I know, but I still try.  I filled my lecture with talk and examples and reasonable comments to which I felt he could relate.  I was still somewhat lecturing as we walked into Menards for a quick stop.  As we walked up the long middle aisle, Aaron was lagging behind.  Finally he said, “Mom!  You keep talking about mad things!”

So I knew it was time to stop.  Enough talking about mad things.  What’s done was done, and I hoped that some of what happened and what I said had made an impression on Aaron.  Yet Aaron lives in the moment, so permanent change is doubtful.  The next moment in the dentist’s chair may still cause frustration for Aaron.   Anyway, the dentist was my first story of embarrassment today.

Number two – Pizza Hut.  Aaron and I love the Pizza Hut not far from the dentist’s office.  It’s fairly new and it has a nice lunch buffet.  Aaron loves anywhere that has an all-you-can-eat buffet, because all-you-can-eat is a meal made in heaven for Aaron.  He does get my money’s worth!  But buffets, where Aaron gets up and down, and is in front of people as he does so, can sometimes max out my embarrassment quota.  I can understand when he’s awkward and spills the salad bar cheese on the counter.  I often go with him in order to help him hold his plate straight and steady.  Pizza sliding off his plate onto the floor has taught me that lesson.  I can understand and deal with that, too.

 
But good old Aaron is so happy and relaxed because of the all-you-can eat reality that he will sometimes break out in song.  He did that today as he went up to the buffet for what I told him would be his last time.  He was remembering the last song we heard on the oldies CD as we parked outside.  I had stayed in our booth near the buffet and just watched him as he put two more pieces of pizza on his plate, and as many breadsticks as would fit.  Then suddenly he broke out into, “Oh, there’s magic….”  Several times, as I watched.  And then some passing gas noises.  I just sat there and savored the moment.  The table of construction guys must have, as well.  I didn’t look.  

Aaron sat down and started talking, loudly, so I did the “Ssshhhh” thing for the umpteenth time.  “It’s always, sshhhh!” he complained to me.  And I told him it’s because he’s always NOT “ssshhhhing” when he should be “ssshhhhing!”  I looked down for a few seconds and looked up to find him with both arms straight up in the air, flashing the peace sign with a look of purpose on his face. 

“Aaron, arms down,” I said with resignation.  At least he was quiet.  Peace.  Until we were leaving.  I had paid the bill, and as I turned to leave, Aaron turned back to the buffet…..where he reached in and grabbed one more bread stick with his FINGERS!!!!  He had me talking about mad things again as I hurried him out the door. 

Number three place of embarrassment – Great Clips, of course.  A new girl cut his hair, and today Aaron talked non-stop to her.  He told her about his scraped arm, his day group, robots, aliens, movies, and what he had done that morning.  “Going to the dentist is not my thing!” he informed her.  And of course, he had to tell her about his room being painted. 

“Do you know what happened on Saturday?” he asked her, sort of breathlessly, as if it was a major and unusual event.  She told him she didn’t know what happened on Saturday.

“This man came to my house,” he continued.  “And he painted my whole wall!” he finished.  Like he would paint only part of it?  I smiled and the new hairdresser smiled, and everyone there was hearing all of this……aliens, robots, disliked dentist visits, and painted walls.  All of it, clearly heard throughout the shop. 

Including his parting words to the nice hairdresser as we stood at the counter to pay.  “Do you like oldies?” he asked her.  “My mom and I are listening to oldies.  Mom said those were songs she knew in high school.  That’s when Mom was young.  She USED to be young.” 

The girl politely smiled, not sure of what to say with Aaron’s “USED to be young” mom standing right there.  Aaron continued.  “Yeah, mom knows those songs.  She USED to be young.”  So then the very composed, somber older lady in the waiting area burst out laughing.  So did I.  May as well.  And as I herded Aaron toward the door, I told this woman that at least Aaron wasn’t discussing my weight.  He’s been known to do that, too. 

You know, there is good embarrassment and there is bad embarrassment.  Aaron’s behaviors, such as he showed to his hygienist today, are a bad embarrassment that makes me feel frustrated and sometimes humiliated.  Aaron’s good embarrassment when he’s singing at the buffet, flashing the peace sign for all to see, or talking about his mom who USED to be young, can still redden my face.  But it’s all fun in the way that Aaron makes it funny.  He makes us laugh, even as we may try to hide.  I can let it ruin my day because of the embarrassment, or I can let it make my day.  I can choose to enjoy Aaron, or I can choose to always be frustrated. 

Sometimes Aaron needs for me to talk about mad things as I try to help him grow and be appropriate.  But many times, I just need to relish the unique person that Aaron is and not let my embarrassment let me miss these special moments with the joy that they can hold. 

It’s magic, if I allow it to be. 

Reminds me of a song I knew when I USED to be young.

 

Water, Water Everywhere

Some of you have asked about how Aaron is doing with his water restrictions.  He’s not.  As in, he’s not really complying the way that I had foolishly hoped he would.  I mean, he’s definitely drinking less than he was before the SODIUM doctor, as Aaron calls him, imposed these horrid restrictions on him.  It’s all the doctor’s fault, at this point and to hear Aaron tell it…..unless Aaron’s also mad at me, and then it’s mom’s fault, as well. 

Can you tell that Aaron isn’t really into this water monitoring business?  I threw out the idyllic plan of completely adhering to 56 ounces of water and other fluids a day after the second day. I mean, how do you completely measure all the fluids that enter his mouth?  He’s a grown man who can go into the kitchen or even the bathroom at any time he wants and grab a drink of water.  Or a water bottle, as he loves to do.  More on that later.

Then he’s at his day group all day during the week.  Even if they try, they can’t tell exactly how much he’s drinking, everywhere he goes, all day.  But I do know that he’s drinking far less than he used to drink, and so I’m going to claim success…..to some degree. 

Oh yes, add on to all the above the fact that he has the autism issues.  If you read my last blog about this water subject, I hope you grasped a strong sense of what it’s like for Aaron.  For instance, the two cups of coffee when Aaron always has three cups.  Now we’re back to three cups of coffee.  Aaron isn’t at all adverse to monitoring that aspect of his restrictive life as he stands right beside me, like a supervisor making sure his subordinate is following all the rules.  Three cups.  Not two.

And not with just a little bit of coffee in each cup, either.  He’s not blind.  He does see and measure the amount.  I pour as little as I can to get by with it and yet still keep him content.  How low can she go?  Aaron will tell me, don’t worry.

And…..lest you get the idea that I let Aaron rule the roost around here, it’s not so.  But….Gary and I do have to live with Aaron, and a constantly frustrated and angry Aaron is impossible to live with.  It’s so easy to assume that he can just handle these changes, but he truly cannot just handle changes like this.  It is not in his make-up or his genetics or his brain function to “just handle” such important matters as his all-important coffee and water consumption. 

One more thing.  When Aaron gets angry about something, he will transfer that anger onto whatever else is irritating him at the time.  All this fluid nonsense is REALLY irritating him right now.  Yesterday he was very impatient about going to Taco Bell.  I had told him I would take him, but not until after the last elimination run of the drag race was over.  After some time had gone by, Aaron decided that this was taking forever.  His impatience flared, and before you knew it, he was talking about sodium……how it doesn’t matter to him, how he doesn’t care about it, how he doesn’t mind getting sick or going back to the hospital.

And with his last, “I don’t care!”…..after we had offered another reason why it’s SO important to keep his sodium levels up and his fluids down…..he marched upstairs and drank some orange juice.  So there!

Later, though, just before bed, he asked if he could have a peach.  We sat at the table while he noisily ate each juicy slice and happily talked.  All anger was gone, and there was no talk of fluids and sodium.  Until he asked, “Mom, is a peach bad for my sodium?”  I was relieved to be able to tell him that a peach was NOT bad for his sodium.  And I wished he could stop and be as concerned about his sodium when he’s angry as he is when he’s happy. 

If you read my last blog, you also remember that Aaron always keeps two large water bottles in the kitchen frig.  I had to throw them away after our visit with the SODIUM doctor.  I replaced them with one little squat 8 ounce water bottle.  Not two.  One.                                                                                                              

 
After Aaron ate his peach, while I rinsed his bowl at the sink, Aaron remembered something.

“Mom!” he exclaimed.  “Look at what I did!”

He grabbed my arm and was trying to pull me across the kitchen.  I protested, thinking that he wanted to take me to his room to show me some random thing he had done on his computer.  But he insisted that what he wanted to show me was right here.

He flung open the refrigerator door.  And VOILA!!  There it was!!

He pointed with great delight to the refrigerator shelf, where there now stood TWO little squat 8 ounce water bottles.  Not one.  Two.
 

“I don’t want it to just be one,” he informed me.  “I want it to be TWO!!”

There we have it.  Aaron must have two water bottles, even if they are just little squat 8 ounce bottles.  He has two.  Not one.

And there they will remain, those two little bottles.  I’m not fighting this battle.  We’ll still limit fluids as we can and see how this goes, but there are other methods to increase his sodium.

I’m thinking a salt lick right beside his desk.  He might think that’s COOL!! 

Even if it is SODIUM!!

 

Day One……Day Two…..Day Three…..

When Aaron was hospitalized in June, the biggest concern that his doctors had was his very low sodium count.  We knew he also had something else going on because of his high fever.  His pneumonia didn’t show on X-rays for a couple days, but the sodium was a huge problem because it can affect the heart.  There are at least three reasons why his sodium may have dipped so low.  It could be one of his seizure drugs that he’s been taking for years; it may be a syndrome related to the pituitary gland; or it could be that Aaron drinks too much water.  Too many fluids can wash sodium and other nutrients out of the body at too great a rate.

Dr. Broberg, Aaron’s family practice doctor at McConnell Air Force Base, has been seeing Aaron since his hospital stay.  He recently checked Aaron’s sodium levels again, twice, and found that they are once more going down to an unacceptable level.  Therefore, he wants us to limit Aaron’s fluid intake to about a liter and a half a day.  Now, this sounds like Aaron can still drink a lot but when you consider coffee in the mornings and even the water he drinks with his pills twice a day, there isn’t a whole lot left over for Aaron to just casually drink during the rest of the day.  At least it’s not a lot for Aaron, who does love his water.

Aaron usually has three cups of coffee in the morning.  They’re not always full cups, but still there are three cups.  Aaron’s a creature of routine, remember, so if he has had three cups of coffee in the past then he wants three cups of coffee in the present.  Three.  Not two.  And definitely not one. 

Aaron also has two water bottles that he keeps in the frig.  Each bottle holds 23.6 ounces.  I know that now, because I had to calculate his intake on Thursday, our first full day of our new routine.  Aaron loves taking those two water bottles to his room and drinking the water while he watches a movie or plays a game.  Two.  Not one.  Definitely not one.

Day Number One: On Thursday morning, I began calculating ounces of fluid before Aaron got out of bed.  I decided to give him 10 ounces of coffee, which isn’t much.  So I split it between two coffee cups.  It really didn’t look like much at that point as I stared down at the halfway filled cups.  Well, maybe Aaron wouldn’t notice, I thought.  Silly me. Then I allowed him 5 ounces of water to drink with his pills, and that would be his morning allowance. 

I didn’t phrase it that way with Aaron.  In fact, I didn’t say anything about restrictions or allowances when Aaron plodded into the kitchen that morning.  I just poured his coffee as he stared at the empty carafe when I was finished.  I poured his pill water, which he usually does, as he continued to stare.  He was doing his own calculations, I just knew it, and it didn’t have anything to do with wanting to comply with doctor’s orders.  It had everything to do with restrictions, even though I didn’t say that ugly word.  It had everything to do with his routine, as well.

I tried to be as normal as possible and as happy as could be without being weird, as Aaron would call me if he sensed that I was being fake.  Finally, he said something about only two cups of coffee.  Oh boy. 

“Remember that you need to be careful about how much you drink?” I reminded him.  “And isn’t it great that you can still have coffee?  Some people can’t drink coffee at ALL!” 

He was pondering that dismal outlook as I left his room, where I had put his two cups beside his desk……in the place where there are usually three cups.  Two cups.  Not three.

The rest of the morning was without incident.  I let our Great Dane ride with us as I took Aaron to Paradigm.  Aaron loves that and I wanted Aaron to love as much as he could on this day of the beginning of restrictions.  Aaron was happy for me to run into Paradigm and discuss the fluid situation with Barb, telling her of the need to monitor Aaron’s intake.  She saw the difficulty in this prospect for Aaron, though she didn’t say a lot about that element.  The looks between us spoke volumes. 

When Aaron got home that day, he told me that he didn’t drink anything while at Paradigm.  I told him that he didn’t have to go without water all day.  He took that to heart as he later reached into the refrigerator for his two water bottles, which I should have replaced with smaller bottles earlier.  As he started to take the two bottles, I told him to take one bottle instead.  One.  Not two.

Furthermore, I told him to drink half of the bottle now and then save the other half until later.  Surprisingly, he agreed.  He was fine for the remainder of the evening, even joking about drinking his other water bottle but not touching it at all.  So far, so good.

Day Number Two:  I felt confident on Friday since Aaron had done so well the day before.  He was handling this restrictive life better than expected.  Yet I knew, too, that his attitude could quickly change.  This was confirmed when Aaron came downstairs after he got out of bed.  He sat across from me at the kitchen table, still sleepy and unsmiling despite my chipper, “Good morning, Aaron!”

“I’m just beginning to hate that doctor,” he said without emotion.  “I want my two bottles of water.”

Well, he laid it out on the table first thing.  Now to deal with it.  God said to ask for wisdom when we need it, so I did.  Not out loud.  Aaron would have thought I was weird.

“Do I have a doctor appointment?” he asked.  He was wondering about the next week.  I told him that he did have a doctor visit scheduled. 

“Is it that SODIUM doctor?” he asked with emphasis.  I told him that it was not Dr. Broberg, careful to use his name, but was with his seizure doctor.  I gently tried to clear Dr. Broberg of all sodium charges, explaining Aaron’s situation and history, but of course this all meant little to Aaron.  He was simply dreading another long day of drinking only one water bottle.  One.  Not two.

He watched me as I got up from the table and starting getting out his coffee cups.  “Can I have three cups of coffee?” he asked.  “Those two went by fast!” he added.

Oh Aaron, you do make me smile even in the midst of your frustration.  So I did give him three cups of coffee, which exceeded my desired liquid limit for him…..but the cups were only about half full.  He noticed this, of course, and I reminded him that he often has half full cups of coffee since he is often shaky.  He accepted that explanation, and I carried his half full cups of coffee up to his room, where I set them in their usual place.  Three cups.  Not two.  Aaron was moderately happy, but still suspicious.
 

Later, as I was drying my hair, Aaron strode in the bathroom.  He had a smile, and now it was my turn to be suspicious.  My instincts were correct.

“Mom!” he said with excitement.  “I drank my TWO bottles of water!”

“You didn’t,” I responded.

“Yes, I did!” he replied.  “But I drank half and then half and then half.”

I just stood there.  I wanted to laugh and I wanted to lecture, but I was truly relishing his method.  He remembered that I had instructed him the day before to drink half of his water bottle.  So on this morning, he decided that referencing those “halves” would soften the blow of his disobedience.  Pretty clever, actually.  I wanted to tell him that for two water bottles, he really should have added another half to his list.  But I decided that this wasn’t the time for a math lesson.

Sure enough, in his room stood his two water bottles.  Totally empty.  Two.  Not one.  And not one half.
 

Sigh. 

Today I replaced his 23.6 ounce water bottles with an 8 ounce bottle.  Such a little bitty bottle compared to the others!  You should have seen his face when I showed it to him!  Half amusement and half surprise and half disgust.  I guess that’s one too many halves for just one bottle.  One.  Not two.

 
Dr. Broberg had no idea of the complications this fluid restriction would cause in Aaron’s life, and therefore ours as well.  How could he?  Living with autism is complex enough on a “normal” day.  Throw in restrictions and changes and routine disruptions, and you have a mess on your hands. 

Day Number Three:  Today is Saturday and Aaron is happy.  We hope that this happiness lasts.  He does have three cups of coffee, partially full.  Three.  Not two.  He has one little water bottle.  One.  Not two. 

And I do have hope that we can make this work.  I have hope on this day three.  I did not have much hope on day two.  Let’s pray that we can look back on this day three and see it as a successful day.  Then I will want more days like this one.

Day three.  Not day two.

 

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?