Category: Understanding

Long Time and Long Day

My goodness!  It’s been such a long time since I’ve written anything new on here that I had to look back at my last blog to refresh my memory.  I haven’t been able to write about life because of life being hectic and so busy.  When I don’t write for awhile, I feel like I’m covered up with things that I want to talk about.  There are too many happenings to share coherently.  So I hope I will just pull back, focus, and be as brief as possible (since WHEN??!!).

Let me say here that I do write more snippets of life with Aaron on my HeSaidWhat Facebook page.  (https://www.facebook.com/hesaidwhat84/).  You might want to check that out, like it, and follow along.

Now, where was I?  LIFE!

Gary and I did make it to Houston after our crazy few days with Aaron’s seizure injuries, written about in my last blog.  Poor guy!  The morning we left, before Casady (awesome friend!) came over to stay with Aaron, Aaron got out of bed and had blood on his face and pillow.  It was more of a pink blood, but still I was worried about his tooth extraction site.  All was well, though, and he did fine while we were gone.  He only had one seizure during his sleep while Casady was here.

We enjoyed being with our kids in Houston, so much!!  Time with Andrea and her fiancé, Kyle…and our son, Andrew…was great!  It’s always too short, but we’re thankful for every minute.

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It was wonderful to spend time with Kyle before he had to go back out to sea.  Sweet to do a little more wedding planning with Andrea, and to hear about her genetics lab that she manages and of the exciting new project that will soon launch under her leadership.

And it was loud and fast and fun to be at Royal Purple Raceway for the NHRA race that weekend, where Andrew is working now for Leah Pritchett and Don Schumacher Racing.

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We got to take Kyle’s mother, Marie, with us on Sunday and introduce her to this sport that you have to see and HEAR and feel in order to fully appreciate.

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Side note:  Leah was the #1 qualifier that weekend and broke a track speed record!!  And this past weekend, in Atlanta, she and the team took home the Wally!  That means they won the race, for those of you who were like me a few years ago and have no earthly idea what a Wally is!

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Even Aaron, who used to be very jealous of Andrew and who bad-mouthed racing, has become a huge fan.  This past Friday, I picked Aaron up at the theater after his group had watched a movie.  It went like this:

 

Me: Did you like the movie?

Aaron: Not really.

Me: Why not?

Aaron: Well, it was about a volleyball game.

Me: Oh, I love sports movies! Why didn’t you like it?

Aaron: I don’t like volleyball. I only like drag car racing.

 

We never thought we’d see the day!

So Aaron has had a few more falling seizures since our return from Houston.  He scraped his neck on the edge of his desk.

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He fell the following morning as we headed out the door, but I was able to somewhat break his fall, thank the Lord!  Our unfinished floor would have been brutal for landing!  He did bend his glasses but that’s no big deal.  Then he had another seizure that night but was sitting, which was a blessing.

I think I’ve figured out a pattern for these seizures, somewhat.  I changed Aaron’s appointment to his Epileptologist in order for him to be seen sooner.  Gary and I have decided to try CBD oil, and our doctor agreed to that plan.  It arrived today and I’m anxious for Aaron to give it a go…and praying that it will help his seizures, and aid in other ways as well.  Aaron has lost lots of weight and has been over drugged, big time, so we really weren’t wanting to go back to adding more meds.  We have lowered his seizure drugs and are hoping we can stay there.  I was reminded this morning as we drove to his day group about how very tired these drugs make him.

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Scenes like that tug at my heart.  I so desire for Aaron to live as normal a life as possible…to feel alert and strong…to be happy.  Many things beyond his control so often prevent that from happening for him.  Seizures…autism…behaviors – all of it can make his life challenging.  One minute he has me laughing…then he has me crying…later I want to throttle him.  So it went on Tuesday.

Our van was in the shop for new tires and some other necessary work.  I couldn’t take Aaron to Paradigm, his day group.  He was quite happy about that, for no matter how much he loves Paradigm and his friends there, he thinks that staying at home is the absolute BEST!  Here is what I wrote on my Facebook page about one of our morning encounters that day.

 

Aaron is staying home today because our van is in the shop for new tires and a check-up. Therefore, I can’t drive Aaron to Paradigm.

Therefore, Aaron is following me around as he talks…and talks…and talks.

Therefore, I have already told Aaron several times that he needs to go find something to do.

It is only 8:37.

Aaron found something to do. He is watching Falling Skies, so he hurried downstairs to tell me that the Queen Skitter Alien is big. Why is she big? Why is she the Queen? Why is there not a King?

Therefore, we discussed Queen Ants and Queen Bees, including their size, which is large. Huge, even, according to Aaron.

There ARE times that Aaron does connect the dots. Usually in ways that are unwanted.

Therefore, Aaron just barged down the stairs with this tidbit:

“Mom!! You’re the Queen, because you’re HUGE!!”

Therefore, I gave Aaron my best stink-eye stare, which he finds quite funny.

Therefore, it’s gonna be a LOOOONG day!!!!!

 

I had no idea when I wrote that about WHAT a long day it was going to be.  Aaron was first funny…

And then Aaron pulled at my heart.  I was outside watering and weeding some, and Aaron decided to “play in the mulch,” as he calls it.  He has always, since he was a little boy, enjoyed breaking sticks and leaves and mulch into tiny pieces, and watching it fall into his trash can.  It’s a very autistic behavior which relaxes and calms and focuses him.  But there is something about it, especially now that he’s an adult, that just touches my heart for him.

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He also decided to lay back on the sidewalk for a minute, and I wondered what neighbors or passersby may have thought if they saw him.  I often wonder that when it comes to Aaron, actually.

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Later came the frustration.  GREAT frustration!

Aaron was not having as much fun staying at home as he thought he would.  He was at loose ends, seemingly bored though constantly denying it, and was continually following me around the house…talking and talking and talking.  I had lots to do and we had no way to go anywhere, except to take our Jackson for a lingering walk around the yard, so Aaron was trapped.

I was trapped!!  In desperation I threw out a life line.  I know better than to do what I did, but I did it anyway.  I told Aaron that when Dad got home from work, we would go to the shop and pick up the van.

What was I thinking??!!  I know not to tell Aaron that something is going to definitely occur…or sometimes to even tell him that it MIGHT occur…because if it doesn’t, then Katie bar the door!!  And I know not to tell him far ahead of time, because the event then becomes his major focus.  I think he had sucked all the oxygen out of the room and I was light-headed.  Not thinking clearly, you know.

Aaron wanted Dad to come home, way before it was time for Gary to be home.  He asked and asked and asked when we were leaving.  I watched the change coming over Aaron with each time he asked that same question, over and over and over.  His focus had narrowed to that one upcoming event, and he wanted it to happen NOW.

When Aaron is like this, his mood becomes angry and impatient.  He wants what he wants, immediately, not later.  It’s totally impossible to veer him from the one thing upon which he is, at this point, obsessing about.

The more I said, the angrier Aaron became.  He was rude and belligerent.  I was tired and frustrated.  I walked away from Aaron several times before saying something that I knew I would regret.  Funny Aaron was now fuming Aaron.

It truly is amazing to see how his mind works at times like this, though I would rather not.  We’ve often said that at these times, Aaron is like a train on a track and there is no derailing him.  A milkshake might have done the trick, but that wasn’t an option.  It was a long late afternoon.

Then Gary got home, unaware of the tension in the house.  His phone rang right away and I listened as he was being told that the van wouldn’t be ready until the next morning.  AAAAHHHHH!!!!

But Aaron was spent, I guess, and with a new person in the house to talk to, he cheered up dramatically.  Gary is amazing, coming home from a demanding job and then dealing with the demands of Aaron.  Aaron was content to later watch some television with me, and then play a game of Skip-Bo…which he won, happily!

Recently, a friend sent Aaron some money for him to use in whatever way he wanted.  As we strolled through Wal-Mart, Aaron found this:

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Aaron flashes the peace sign all the time, so this figurine was perfect for him.  He wanted it right away, so some of Bill’s gift was used for this gift for Aaron.  It’s a perfect fit!

And it’s a perfect reminder to me that peace always returns after the rough spells – both peace in our home and peace in my heart.  That’s because I know the God Who made Aaron.  I know Him personally and He guides my every step, orchestrating each day.

God’s peace is only one of His many gifts to me.

Aaron is another one…another of God’s gifts.  I need to remind myself of that fact at times.

Actually, God has many ways of doing just that in my life…of reminding and refreshing me.

And for that…and for Aaron…I am grateful.

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All Aaron!

I heard Aaron through the baby monitor early this morning.  He wasn’t having a seizure but instead was making the unmistakable sounds of getting out of bed for more than just a trip to the bathroom.  When he turns his lamp on and moves his stuff out of his desk chair…his two back scratchers and his hand towel – always, always in his desk chair…then I know that he is getting up for the day. 

UGH!!!  I knew it was way, way too early for him to be awake for the day because I had just rolled over, unable to sleep myself, and saw that it was 4:00 a.m.  I turned the monitor off, tried to sleep but couldn’t, and later just got up and began my day. 

I was sitting at my quiet time desk, Bible and study book open, when in walked Aaron.  Another UGH!  And I don’t mean to sound mean.  It’s just that Aaron will not leave me alone if he is up and about in the early morning.  Without even looking at him, I said, “Aaron, do NOT come in here right now.  It’s too early.”

Total quietness.

So I turned my chair around and there stood Aaron, some videos in hand, slightly smiling.  He looked very chipper and very fully awake, and very happy.  Much happier than Mom.  But I had to smile, too, at the cute look on his face.

“Mom, I got out of bed…” he began.

“Don’t even go there,” I said.  “I know you were up at 4:00.”

“4:11,” he flatly replied.

I had to belly laugh at that.  His precision is always so funny, even before 6:00 in the morning!

We talked and compromised, Aaron saying that he would go back to bed if I would make sure he was awake at 7:30 so that he could say goodbye to Dad before Gary left for work.  Agreed.

I thought about yesterday when Aaron and I ran into Dillon’s before I took him to his day group.  If possible, whenever we are in Dillon’s, Aaron always loves walking up to the fresh seafood and fish display.  He loudly points out the shrimp, lobster, crab legs, and anything else he finds unusual and therefore very interesting.

But yesterday there was a surprise!  Aaron was beyond excited to see two whole fish, Tilapia, laying there on ice. 

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“MOM!!!  LOOK!!” he exclaimed as he pushed his way in front of a little family also standing there.  “He’s ALL fish!!!” 

How I love the way that Aaron expresses himself…well, most of the time!

Gary and I can truly say…He’s ALL Aaron!

Like taking him to Subway over the weekend for a sub.  Subway and Great Clips are two places where, for some reason, his autism just shines.  There in Subway he told the young girl waiting on us all about Dracula since he’s getting ready to watch the old, old Dracula movie.  He asked her if she had seen the movie, did she know where Dracula lived, and how his voice “sounds like England.” 

I kept re-directing him to think of his sub and not Dracula, so he told the girl that he wanted the bread with the black dots on it.  I had told him the correct name since this bread is new to him, but he couldn’t remember that.  She looked confused, I tried to interpret, but Aaron by then was already asking her if she could show him a picture.  And on we went from there until finally we had the sub with black dots in hand and safely exited. 

Later, as he ate his black dotted sub, I asked him if he liked that new bread.

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“I like it!” he answered.  “It tastes weird.”

That’s Aaron…ALL Aaron!

His take on food is so interesting and funny.  Last night he was eating peanuts.  He is often fascinated, over and over, by the outer skin he sometimes finds. 

“I’m afraid to eat those outering parts of the peanuts,” he told me. 

And orange juice pulp – “This orange juice looks like it has worms in it!”

There he goes…ALL Aaron!

Today describing his observation at Great Clips – “You know what I noticed they do to those women?  They take them to that water place and put their HEAD in it!!” 

YIKES!!

All Aaron again!

I could go on and on sharing many insightful, funny, amazing, and embarrassing comments from Aaron.  I have tons, trust me!  So why do I share?  To make you laugh?  Cry?  Scratch your head…like we often do? 

It’s like this not-too-great picture I took of Aaron awhile back.  We had just gotten home after I picked him up from his day group.  Aaron LOVES to share with his friends, so on our drive home he was already asking about what goodies he could take the next day to share with Natalie, or Simone, or Heather, or….

He didn’t even take his coat off, but just sat down on the floor in front of the cabinet, pulled out the snack drawer, and went to work searching for his next treat to share.

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In much the same way, I want to share with all of you what a unique young man our special Aaron is.  There are so many varied parts to Aaron.  Some parts I love to share, and others I may want to hide, but they all make up who our son is. 

Autism is not the end of the world, honestly. 

Instead, it can be the beginning of another world…a quite amazing journey.

And so I want to say to each of you –

“LOOK!!  He’s ALL Aaron!”

 

What Time Is It??!!

So today I have another Chicago song rumbling around in my brain.  A couple weeks ago it was the song “Color My World” that I wrote about.

But today…today it’s the song, “Does Anybody Really Know What Time It Is?”

The chorus begins:

Does anybody really know what time it is?

            Does anybody really care?

Stop right there!!

Yes, somebody cares!!!

AARON CARES!!!

For anybody new to my blog, Aaron is our amazing adult son with autism.  And keeping the correct time is of paramount importance to him.  I mean, look at his log book that he keeps with his time to go to bed at night and the time he gets out of bed in the morning.

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And many of you still chuckle with me when I share conversations similar to this:

Aaron:  “Mom!  I woke up early this morning!  Guess what time I got up?”

Me:  “You got up at 7:00.”

Aaron:  “No!!  I got up at 6:58!!”

Aaron loves keeping his eye on the time, the PRECISE time!  Therefore, this change yesterday to Daylight Savings Time caused a huge bump in his road of exact time keeping.

And that’s why I waited until he and I were driving to Sam’s Club in the early afternoon to even casually broach the subject of another time change.  He listened and then didn’t have much response, but I’ve learned not to be fooled by his silence.  He was pondering this unwelcome news with each ticking second of his wristwatch…his wristwatch pushed way up his arm, always, for those of you who may not know that little fact.

His Sam’s food treasures kept him from dwelling too much on the time issue.  Pineapple slices…cheese cubes…dry roasted peanuts with sea salt (Aaron likes using their full description!) (and talking about what dry roasted means until Gary and I are sick of the topic of dry roasted peanuts with sea salt!)…strawberries…orange juice…and dog jerky for our big Great Dane, Jackson.

Once home and all unloaded, Aaron went out with me to the front yard.  He kindly picked up branches that had fallen in our last wind storm.  We praised him for his helpfulness, and how he was allowing Dad more time to work on our bathroom remodel.  Or as Aaron puts it – “tearing the bathroom.”  He was very proud of his job well done.

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And then it hit him.  The afternoon was moving right along.  We were going to watch our West Virginia team play Kansas at 5:00.  Aaron asked about what time the game started, which reminded him of that time issue discussed earlier, and the countdown began.

“Mom?  When do we change the time?”

“We’ll just change the clocks when we go to bed, like we always do,” I told him.

This question was asked in one form or another several times during the evening.  Then it got complicated.

It was 8:30ish when we finished watching a program.  “Maybe I should go on to bed,” Aaron said.  I suggested that we watch one more thing, and then he could call it a night.

“But when does the time change?” he asked again.

“Well, technically it changes during the night when we’re asleep, but we’ll set the clocks ahead when we go to bed,” I replied.

He was satisfied with that.  We watched one more NCIS and then it was definitely time to hit the sack.  Aaron ran down the stairs to say goodnight to Gary, remembering to have Dad change the time on his wristwatch.  We got all the bedtime routine taken care of, with Aaron pushing up his sleeve every minute or two to check the ever important time on his watch.  His eyes were darting, though, to the time on his satellite weather station.  We had told him that the time there would change automatically during the night.

Finally, he pushed up his pajama shirt sleeve, stuck his arm out for me to see, and said, “Mom, look.  It’s this time on me.”

He was struggling with having one time on his watch and another time on his weather station.  Nothing I said was helping much.

Then…THEN…the inevitable happened.  It was time for Aaron to write down his time to bed in his log book…and the time on his weather station did NOT jive with the time on his watch.

What to do??!!!

He wrote down the time displayed on the weather station.  I said goodnight.  I should have known it was not over.

Nine minutes after he went to bed, I heard his heavy footsteps coming up the hallway.  Soon there was a knock on the bathroom door.

“Mom?” he asked.  “Is it really 9:47?”

“Yes, Aaron, but during the night it will change while you’re sleeping.  Now go on to bed and don’t worry about it.”

Off he went.  I think it was 9:48.

I was starting to breathe easy, but I shouldn’t have.

More footsteps.  Another knock.

“Mom?  Is it really 10:03?”

Bless his heart.  These things are so, so urgent and of such great importance to him.  I dare not dismiss them or shrug them off or make him feel like he’s ridiculous to be so tied up in the stress of what time it really is.  Gary and I know to explain over and over, if needed…and it almost always is.  Small price to pay, really, for Aaron’s peace of mind and for ours.

All was well today.  Aaron was super excited to eat lunch at Carlos O’Kelly’s, so it appeared that all the time issues had been laid to rest last night, at the same time that Aaron finally decided to rest.

I think it was 4:43 when we were all walking in from the garage…and Aaron spied the time on the garage door opener.

“Dad!  It says 3:43!!”

And in no more than a couple seconds, maybe three, Gary had gotten that garage door opener in sync with Aaron’s watch, Aaron’s weather station, the microwave that Aaron had just watched me change, the oven, the radio…

So…

Does anybody really know what time it is?

            Does anybody really care?

Silly song!!

 

 

 

 

 

 

To Notice or To Ignore

The other night, Aaron and I were watching a DVD as he munched happily on his jar of peanuts.

“Mom!!” he suddenly exclaimed.  “What’s this on my dry roasted and salted peanuts?”

That by itself was funny, the way he says the complete name of the peanuts printed on the jar. Of course, Aaron sees nothing unusual about that at all.

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What WAS unusual, to him, was the little thing that he held up for my viewing.

“What’s what?” I asked as he held something miniscule up for me to see.

So Aaron quickly pushed back his blanket, crawled out of his chair, and stood beside me with his open palm carrying the mystery object.

Before I could tell him what “it” was, Aaron decided to first inform me of what he thought “it” was.

“It’s the cover that’s on some of the peanuts,” he told me.

This isn’t the first time that Aaron has called the thin skin on peanuts a “cover.”  It had been awhile since we had carried on this conversation.  I therefore told him once again that the “cover” was actually a thin skin that remained on some of the peanuts after they were processed.

“A skin?” he asked.  “Can I eat it?”

I assured him that he could eat it.  Later, after he had gone to bed, I found several peanut coverings on the table…ones that he had set aside, not to be eaten along with his dry roasted and salted peanuts.

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Yesterday, Aaron and I ran down to Dillon’s to buy him some lunch.  There in the entry were some little Girl Scouts selling their Girl Scout cookies.  Aaron had walked ahead of me, so as I grabbed a cart one of the girls focused on Aaron.

“Would you like to buy some cookies?” she asked him.

But Aaron had spied the salad bar.  At that moment his entire focus was on lettuce and cheese and boiled eggs and lots of ranch dressing…not on little girls with yummy cookies for sale.

Aaron completely ignored the girl’s question as he barreled in the open door and headed for the salad bar.  I was hurrying after him, because Aaron is sometimes a disaster at salad bars.  My job is to keep his fingers out of the tempting toppings, his head out from under the plastic shield, and to minimize spillage as he insists on “doing it myself!!”

But as I rushed by the sweet little scout, I definitely saw the look on her face.  She was confused by Aaron; for many reasons, I’m sure.  One of the big reasons, though, had to have been the way he completely dissed her and her question.  She was totally ignored.

I smiled at her as I scurried by, thanking her and saying no thanks, and wondering what she must have thought.

I survived the salad bar with Aaron, even as he told me I was rude for taking the tongs away from him as he spilled first some lettuce and then some cheese, and as I yanked the ranch dressing bottle from his hand before he squirted half of it on his salad.  A man was awaiting his turn, and as I turned to walk away he just smiled at me.  Aaron does have a way of becoming the center of attention no matter where we are.

I grabbed a few more items and then we went through the self check-out, me reminding Aaron over and over to stand beside me.  No wandering off to inspect other’s purchases, engage a random stranger in conversation, or sit down at a Starbuck’s table up the aisle while he ignored the worker who asked him if he wanted something.  All of the above…and more…he has done, trust me.

It was easier this time, though, because Aaron was keeping his eyes on his salad.  After I had paid for everything, he took his salad and held it in his two hands.  He walked this way out of the store, holding that salad ever so carefully, as if he was carrying a delicate Ming vase that he dared not jostle at all.

Aaron was once again so focused on his salad that when the young man who was overseeing the self check-out spoke to Aaron, Aaron once again totally ignored him.  And once again I saw that look on the employee’s face, the look that mirrored the one on the little Girl Scout.  A moment of confusion at being dismissed in such fashion.

But I also saw the young man’s face relax with understanding as I was sure he was quickly processing the reality that is Aaron.  And as I walked by, I spoke to him as I chuckled, and he broke out into a huge grin.  He got it!

How is it that Aaron can pay attention to a tiny little peanut “cover” while totally ignoring human beings who are speaking to him?

Elementary, my dear…elementary.

Autism.  Pure and not so simple.

Aaron often notices what we don’t notice, and ignores what we do notice.

When it comes to ignoring people, we can be downright embarrassed at times.  And then there are those times that it’s probably better for him to not notice certain people.

Anyway, the complexities of autism take many years and many experiences to understand.  Plus each individual is just that…an individual who is unique in how autism presents itself in their life.

That’s why it’s called a spectrum.  A “broad range of varied but related ideas or objects.”

Except Aaron is not an idea or an object.  He is a unique and varied human being, one who delights and engages and ignores and yells and frustrates and…

Well, you get the picture.  At least I hope you do!  Because then you can smile more as you enjoy the broad and varied view.

 

 

 

 

It’s NOT a Small World

On a recent night, as Aaron and I watched a video and he ate his tortilla chips, I looked over to see that he had perched a bowl on the ottoman in front of him.  Without even asking, I knew what that bowl was for.  Aaron has multiple bowls for multiple uses, all over the house.  Later, after our video was finished and he had cleaned up his area, I looked inside his bowl that he had brought into the kitchen.  Can you see what’s inside the bowl?

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Very, very tiny crumbs are in the bottom of that bowl.  When Aaron is eating crumbly chips, he likes to have a bowl in which he tries to ensure that the crumbs fall.  It’s easy for me to want to fuss at him for taking a whole bowl for such a few crumbs, but I know that my fussing will not change his bowl habit.  He will find a bowl to use, even if he must hide it under his blanket so that I don’t nag him about it.  Yes, he has done that.  So I just let it go…let him keep his bowl for such a seemingly silly use…and thank the Lord for my dishwasher!

Those little crumbs are a perfect picture of an aspect of Aaron that can be both humorous and maddening.  And as always, it’s up to me to decide which it will be.

So often, persons with autism fixate on what to the rest of us would be such insignificant matters.  Like those small crumbs, we would tend to just brush such matters away without a second thought .  But not Aaron!  Not at ALL Aaron!

Take the word, “of.”  Yes, “of.”

Did you realize that there is a movie entitled, “Battle:  Los Angeles?”  And that there is another movie entitled, “Battle Of Los Angeles?”

Aaron watched these two movies a few weeks ago, so Gary and I became ever so aware…once again, because the same thing happened the LAST time he watched those movies…of the importance of the word, “of.”

“Mom!” Aaron would say as he bound into the kitchen.  “I’m watching Battle:  Los Angeles!  Not the one that has the “Of!”  And off he would go in some long tale of the latest alien doings in “Battle:  Los Angeles.”

Then later:  “Mom, did you know that in Battle Of Los Angeles…not the one I’m watching right now – the one that has the ‘of’…”  And another long story would follow.

And yet again:  “Mom, in Battle of Los Angeles…the ‘of’ one…”

It was of upmost importance that he…and we…and anyone else listening…be clear on whether he was talking about the ‘of’ one or the non-‘of’ one.

Are we clear?!

Such a small matter, but huge to Aaron.

Dinner plates done right are also of utmost importance to Aaron.  A few evenings ago, at supper, Aaron had a barbecued rib on his plate.  He ate the rib, then tolerated us putting some cucumbers and ranch dip on that plate.  He ate the cucumbers and dip, then stood up and opened the cabinet door, and took out another plate.  We had asked him if he wanted another rib, and he said he did, but he didn’t say another word about what we knew was bothering him.  He would NOT put his second rib where cucumbers and dip had been, so a new plate was in order.  With his rib on a clean plate, he was happy.

Meals can be interesting with multiple plates, bowls of various sizes, two or more forks, a spoon and a knife no matter what we’re eating, and always more than one napkin.  May as well not fight it!

Life for Aaron is crammed full of these little crumbs.  Like the old children’s story of the Princess and the Pea, where the princess felt that little pea under all those mattresses, Aaron does feel the weight of all these matters that to us are very small and silly.

Therein lies the problem, though.  They are not small and silly to Aaron.  If we don’t understand that, then we will feel the weight of Aaron’s anger and frustration.  He can’t necessarily verbalize what he is feeling, or even understand it himself, but the issues are huge to him and not to be swept under a rug, so to speak.

Aaron’s life has a certain order to it, and he needs those around him to be on the same page with him.  However, most of us are not only on a different page, we’re in a whole different book!  So we’re always having to be aware of what matters most to Aaron, and when, and why, and how…if at all possible.  Notice I said that we must be aware of what matters…not even understand it…but at least to be aware.  And to place the importance on it that Aaron does.

So there may be more bowls to wash, or plates or silverware.  There may be more undue emphasis on minor little words like ‘of.’  More questions to answer, explanations to wade through, and endless stories and comparisons to endure.

But each little crumb collected in that bowl is a part of the puzzle that is Aaron.  Each sigh that escapes our lips…each roll of our eyes behind his back…each scratch of our head…is just part of the process of piecing together all that is Aaron.

Along with all that, though, is plenty of laughter and lots of smiles…and a view of our world that is anything but small.

 

My Round Guy in An Oblong World

A few weeks ago, Aaron was eating some of his favorite Skittles when he came upon an idea, one that he loves.

“Mom?” he asked.  “Can I take some of my Skittles to Paradigm to share with Shauna and Stephanie?”

Aaron loves to share things, and we love that he loves to share…within reason.  For instance, I had to say no when he wanted to share some of my jewelry a long time ago.  We have said no to him when he tried to sneak out of the house with some of his DVD’s or CD’s that he wanted to share.  But Skittles?  Sure!

So Aaron promptly went to the kitchen and grabbed two sandwich bags.  Later, I found this.

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I had to laugh.  Really?  Just three little Skittles per bag?  But for some reason, Aaron thought that three was plenty and so I let it go, hoping that Shauna and Stephanie enjoyed every little bite of their whopping three Skittles.

Days later, I bought Aaron some Good and Plenty candy for his weekend treat.  He began eating them as we watched a show that night.  I noticed, though, that he was laying aside some his candies while he ate others.  I asked him about it.

“These,” he said, pointing to the ones outside the bowl, “are not like the rest.  They’re different.”

Sure enough, the ones he put aside were different.  They were round instead of oblong.  To Aaron, round Good and Plenty candies do not belong in the same bowl as the normal, oblong Good and Plenty’s. 

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I later also found three more misfit, round candies that Aaron had placed on the shelf under the table. 

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Isn’t that interesting?  To Aaron, he just couldn’t tolerate mixing the round with the oblong.  I guarantee that if I had tried to sneak the round candies back into the bowl with the oblongs, then Aaron would have once again removed them. 

Aaron has so much to share with the world, like his Skittles that he wanted to share with his friends.  He can be bright and colorful, interesting and very funny. 

He is also quite unique, not fitting in with much of the rest of us in ways that we all notice.  Yet he IS still one of us.  He’s just a different shape, so to speak, but that doesn’t make him less than us or worse than us in any way.  Definitely not!

I share Aaron with others through this blog in order for people to understand how amazing our special ones are.  Aaron was created by God to be exactly who he is.  It’s up to me…to all of us…to understand and appreciate him.  Oh, he can be so difficult to understand sometimes.  And at times…tired times…embarrassing times…challenging times…I really falter in my appreciation of Aaron.  I’m human. 

But may I never set him aside in the sense of isolating him or shaming him.  And woe to the person who does, for this Mama Bear will roar. 

Yet Aaron sets himself apart in ways that he totally doesn’t realize.  It’s part of his charm…and part of the reason that on occasion my nerves are shot!

He can make such a spectacle of himself in public and not be one bit embarrassed.  I have many Wal-Mart stories that prove this point.  A recent one:  I’ve been working with Aaron about looking in both directions before crossing traffic.  He looks at his feet, which is not good!  I’m always telling him to look around, but still he looks at his feet.  So the other day at Wal-Mart, as we walked out of the store and were nearing the crosswalk, I saw Aaron once again looking at his feet.  “Aaron!” I sharply said.  “Look UP!”  And good old Aaron stopped abruptly in the middle of the crosswalk, with stopped cars on both sides, and looked up…at the SKY!!  I just shook my head, told Aaron to look for CARS, and didn’t dare look at the drivers to see what looks they were giving US!!  I wonder if they looked up to see what was in the sky that was so interesting?!

At a convenience store this week, Aaron ordered a pretzel on the computer in the café as I’ve taught him to do.  But Aaron still isn’t sure that the girl behind the counter actually receives his order because he hasn’t said anything to her.  After he placed his order, he leaned around the counter to the clueless attendant and loudly said, as he rubbed his hands together, “I ordered my order!!”

Some people get Aaron and some people just don’t.  She just didn’t, so she looked at him with impatience, which I saw.  But Aaron didn’t see that at all.  He thought she simply didn’t hear him, so he repeated it again…loudly, again.  “I ordered my order!!” 

“He’s just telling you he put in his order,” I explained to her as I led Aaron away from the counter and toward the chocolate milk he wanted.  I thought it was funny…and sad…and I was a little angry at the girl’s impatience.  But I know that to some, Aaron is an odd shape, so to speak.  Hard to figure out.  Off-putting, even.

I have to say, though, that he makes me laugh when he does things like that.  He’s so one-of-a-kind…so himself…so uninhibited.  Oh yeah, have I been humiliated and red-faced and angered and surprised!

But I’ve also been blessed and taught so much and humbled and thankful.  And those moments…those lessons…I must remember and focus on and treasure.

Like this one:

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See what I mean?  He’s most certainly my round guy in an oblong world!  

 

Life is Like a Coupon Box

I walked into the kitchen on a recent Sunday, after Aaron had completed his usual Sunday coupon clipping chore.  There on the counter lay a Dillon’s coupon, one that I had put into my coupon box several days earlier.  I knew right away what this lone coupon on the counter meant.  It spoke volumes to me as it silently stared up at me…..volumes about our Aaron.

You see, this coupon…

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Does NOT belong among these coupons.

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The Dillon’s coupon is not a regular coupon to Aaron, and only regular Sunday coupons are to be placed…precisely…in the coupon box.

Silly mom for thinking otherwise.

Aaron’s life is like that coupon box.

Aaron wants most things in his world to be done in a certain order…..words said in a particular way…with order and sequence and expected results.  But life doesn’t operate that way, no matter how much Aaron tries to orchestrate it to do so.

I saw a small example of this the other night in our family room.  Aaron was looking forward to watching one of our favorite television shows.  He wanted to know what time it was coming on, so I told him what the television guide said.  BUT…I had to add…the football game that was on earlier would no doubt disrupt even the best planned TV schedule.

The TV guide said our show would air at 8:30, but at 8:30 another program was still on.  Aaron was not happy about this development.  I explained the situation, multiple times, as Aaron sat in his favorite chair with his legs covered by his favorite blanket and with his favorite snack-of-choice on the ottoman in front of him. 

He sat there in misery, staring at his jar of cashews, and not-so-patiently waiting for his program to start.  Football games are the epitome of a messed- up world, in Aaron’s orderly world.  A 15 minute quarter may last 47 minutes, for crying out loud, and THIS IS UNACCEPTABLE!! 

So there Aaron sat in his chair, waiting for the other boring show to end so that his anticipated show could start.  But that wasn’t all that wasn’t right in Aaron’s world.  It was the cashews.

You see, he will only eat his snack-of-choice during the actual television program.  Not during the offending show that was still playing.  Not during the commercials.  ONLY during the actual program that is to be seen will he eat his actual snack that is to be eaten.  So he sat there, staring at his open jar of cashews in front of him, but forbidden because of the dumb show that was still on…because of the dumb football game that was before that…on this day that was getting dumber by the minute. 

We made it through that cascading torrent of dumbness…barely…without a meltdown or without Aaron giving up on it all and returning to his room like he threatened to do.  And on the very second that his program appeared on the screen, Aaron’s hand dipped into the jar of cashews and his world was set upright on its axis, as it should be. 

The coupon box once again only held the correct coupons.

Last night, as I waited for Aaron to get his bedtime routine completed, I watched him write down his time-to-bed in his special notebook…a new notebook, by the way.  His other is year’s full of the times he went to bed and the times he got up in the morning.  Aaron wrote down the time…10:14.  He was preparing to close his notebook, but paused and then gave a little sigh as he scribbled something out in his Went-To-Bed column.   

“What happened?” I asked.

“It went to five,” he flatly answered. 

Yes, the time changed the second he finished writing 10:14.  It became 10:15, so he HAD to correct the time in his notebook.  Scribbled-out numbers are unsightly, but far preferred over having the WRONG time recorded. 

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The coupon box was once again correct.

Aaron is slowly working his way through watching the complete old Star Trek television series from the 1960’s.  In the opening monologue before each show, Captain Kirk is referred to as Captain James T. Kirk.  Therefore, Aaron NEVER calls Captain Kirk just Captain Kirk.  Captain Kirk is Captain JAMES T. KIRK, people!!

So this conversation happened the other day:

“Mom, who’s your favorite Star Trek character?” Aaron asked.

“Hmmm…” I pondered.  “I guess it would be Captain Kirk.”

Aaron looked at me blankly, as if I had mentioned a foreign character from another show and another time and another planet and another galaxy.

“Who?!” he questioned.

“Captain Kirk,” I repeated.

He continued to stare at me.

Finally…

“You mean, Captain James T. Kirk?” he queried.

Oh, how I wanted to double over in a total belly laugh!!!

But doing so would have highly offended Aaron, so I had to just answer him as seriously as if I was agreeing to the outcome of a very serious discussion about a profound world event.

“Yes,” I sincerely replied.  “Captain James T. Kirk.”

Aaron was very relieved to have this issue settled, and so his Star Trek discussion was continued.

The coupon box was aright once more.

It’s vital that those who live and work with Aaron understand how very profoundly his life and his happiness is tied to the order that he alone sets for himself…and expects everyone else to understand and follow.  Sometimes his desired order can’t be followed, but we must know how to guide Aaron through those times.  Those times when the wrong coupon is in his box, and Aaron most definitely will react, are times that demand great patience on our part. 

When Aaron is deeply frustrated, angry, defiant, or confused is very often a time when the wrong coupon is in the box.  We can’t always see it and we don’t always expect his strong reactions, but we…and everybody else who works with Aaron…had just best realize that there is more going on inside that brain of his than we will probably ever know or even remotely understand. 

It can be so hard and challenging and maddening to us at times…and we know Aaron better than anybody on the planet.  We love him more than anyone, too.  Imagine how very difficult it can be for others to achieve this level of understanding!  And how very impacting in our lives it can be for this lack of understanding to affect us, and Aaron, in a very negative way! 

We have been very blessed with some amazing, kind, understanding people in Aaron’s life.  We have also seen the damage that can come from those who don’t get it.  We have watched this damaging impact in the lives of others whom we know and love, as well, who have special children that have their own coupon box.

Let’s give grace to our children…to the parents of these special ones…and try to comprehend just what each one’s coupon box is really all about. 

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