Did Someone Say, “Time CHANGE?!”

I am 99.9% certain that whoever thought up all this time change business did not have a child living with them who had autism.  Specifically, a child with autism who has as one of their obsessions the desire for living life with precision timing.

Such is our Aaron.

Aaron wears a watch every day of his life.  If his watch breaks, time for him stands still…and time for us is nearly unbearable until the broken watch can be replaced.  Trust me, we take as little time as possible in finding him a new watch.  It must be a specific watch, one with numbers all around…a second hand…and the day and date feature.

Heaven help us when the day and date feature needs to be adjusted!  Aaron doesn’t have time to wait for that, either, and when I mess it up…which I so often do…then the world is off balance for Aaron until Dad is able to come to the rescue.

Many of you have heard lots of stories about Aaron’s precision with time.  For instance, on the weekends Aaron wants to eat lunch at 12:00 noon.  This often happens:

 

Me:  Aaron, do you want to eat lunch?

Aaron:  Yes.

Me:  What do you want to eat?

Aaron:  Can I have pizza?

Me:  Sure.  I’ll fix it now.

Aaron:  I want to eat at 12:00.

Me:  Well, it’s almost 12:00.

Aaron (pushing his sleeve up to look at his watch which is worn halfway up his arm):  No, Mom!  It’s 11:56!!

I sigh, exercising my lungs as I so often do with Aaron, and make sure we wait until 12:00 on the dot to start the lunch process.

Here’s another familiar scene:

 

Aaron:  Mom, I woke up at 7:58.

Me:  So, you woke up around 8:00?

Aaron (looking at me as if I had three eyes but no brain):  No!  I woke up at 7:58!

 

I began preparing Aaron for the dreaded time change on Saturday afternoon.  When we finished watching our DVD before bed, he glanced up at the clock in the family room.

“Mom,” he began.  “It’s 10:47, but it’s really 9:47, right?”

I assured him he was correct as he followed me into the kitchen.  He carefully watched me change the stove clock, the microwave clock, and the coffee pot clock.  Things were progressing smoothly.

Little did I know.

The bedtime routine was moving along normally when Aaron sat on his bed to write the time in his logbook.  This logbook in which Aaron records…precisely records…his time to bed and his time to get up.  Every.  Single.  Day.

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Aaron stared at his complex weather station clock beside his bed…the one that needs a person with an engineering AND rocket science degree to change the time.

“MOM!!!!  My clock says 11:02, but it should say 10:02!!!”

WHY DIDN’T I REMEMBER AARON’S CLOCK?????!!!!!

But outwardly I was the picture of calmness.  I told Aaron that I really thought it would set automatically by satellite.  Aaron sat on his bed with his logbook open, very still, staring at the clock as if he could will it to change.  I stood beside the bed, staring at Aaron as if I could will him to change.

Silly Mom.

He scooted off the bed and headed for the door.

“I’m getting Dad!” he informed me as he left his room.

Thump, thump, thump down one set of stairs.

Thump, thump, thump down the second set of stairs.

Soon I heard Aaron pounding up both sets of stairs.  Seriously, he takes stairs like a bull elephant.

And there followed Gary, much slower than Aaron, who was full of purpose.

“Dad, can you set my clock?!” he asked anxiously.

Gary set the clock, Aaron sat once again on his bed with his logbook open, and I stood there waiting hopefully for the time to be entered, precisely.

Aaron stared at his weather station clock.  Then he pushed his sleeve up and looked at his watch.  He stared again at the blue numbers on his very difficult weather station clock.

“MOM!!!!  It says 12:10!!!!  It should be 10:10!!!!!”

Oh.  My.  Word.

Dear Gary, in his tiredness, had set the clock AHEAD an hour.  Instead of falling back, we had gone full speed AHEAD…and Aaron was full speed DONE with this crazy time change!!

SO WAS I!!!!!!!!

“Aaron,” I kindly said (despite how UNKIND I felt), “can’t you just lay down, close your eyes, and go to sleep?”

It would have made more sense to tell him to climb Mt. Kilimanjaro…barefoot…in the dark…with no guides…and no supplies.

I wonder what time it was in Tanzania?

Aaron informed me that he could do none of those things.  Lay down, close his eyes, or go to sleep.

“Aaron,” I continued (my lips drawn tighter than they had been), “can’t you just wear your watch to bed?”

With that, Aaron once again pushed his sleeve way up his arm and stared down at his watch.

“MOM!!!!” he said, “we need to change the time on my watch!!!”

AAAAAAHHHHHHHHH!!!!!!!!!!!!!

Anyway, I prohibited Aaron from going back to get Gary.  I changed the dumb time on his watch.   I then sat down on his bed, praying as I started pushing buttons, and somehow someway I was able to change the stupid time from 12:10 to 10:10.

Can you tell I was done?  I needed a time out!!!

Oh, but we weren’t done!

Aaron was, once again, sitting on his bed while staring at his ridiculous weather station clock.  Whose idea was it to get him this clock anyway??!!

All the bases had to have been finally covered, I thought.  Aaron’s just waiting for the minute to change, as he usually does, before he will write down the time.

The EXACT time, for crying out loud!!!

“MOM!!!!” he nearly yelled, “it’s FLASHING!!!!!”

“WHAT????!!!!” I nearly yelled in disbelief.  “What’s FLASHING????!!!!”

And sure enough, under the very current and precise time, there was flashing the words, “NO WI-FI.”

“It says, no wifey,” Aaron told me.

“You’re about to hear, no mother,” I wanted to say, but didn’t.

“Here, Aaron,” I said now through almost gritted teeth, “you can just turn your weather station clock around like this and then go to sleep.”

But I may as well have told him to climb….

You get it.

No, Aaron could NOT just simply turn the clock around like this or just go to sleep like that.  Not with “NO WIFEY” flashing under the very perfect and totally precise time!!!!

I guess Aaron was spent…or knew that I was…because he finally got under his covers and let me escape to my room.

But soon I heard him thump, thump, thumping downstairs…where he told Gary about the flashing “NO WIFEY.”

Then came the thump, thump, thumping upstairs…and the elephant stomps to my closed bedroom door.

“Mom?” he said. “I’m tired of this day.”

“I know, Aaron,” I told him.  “I am, too.”

Never were truer words spoken!!

He walked back to his bed.

He was soon back at my door.

“Mom?  Do you think I should just wear my watch to bed?”

“I think that would be a good idea,” I replied (hopefully!).

Again, he was under his covers.

“MOM!!!!” I heard from the monitor in our room, “it quit flashing!!!”

Thank you, Lord!!!  I really did thank the Lord!

But if you ask me, it’s high time to change the time change!!

At least it is in OUR house!!  WHEW!!

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Remember When?

Aaron loves looking at a particular picture of me and Gary, taken back in the day.  WAYYYY back in the day, to be clear.  This picture was taken at Gary’s Army Flight School Banquet upon his graduation.

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Aaron has always said that he thought this photo was of our wedding, so I am often correcting him about that as I repeat over and over that this was taken four years after we were married.  Aaron doesn’t sweat the details, though, and he continues to tell us…and others…that here are Mom and Dad at their wedding.

But there is another detail that Aaron loves to share the MOST as he either talks about this picture or gets to show it to people who come to see us in our home.

“In her wedding picture,” Aaron begins (and I know exactly what is coming!), “Mom used to be skinny!!”

Emphasis on “USED to be skinny.”

As in I was…in the past…not the present…in the FAR distant past…skinny.

Aaron will randomly tell this bit of news to anyone who has ears, including people who barely know me.  He will share it within the context of any conversation, out of the blue, ignoring people’s curious looks and my rolling eyes in my red face.

Yes, Aaron, I USED to be skinny.  Those WERE the good old days.

I’m able to laugh as I tell this story, even as I constantly try to keep Aaron FROM telling it in order to hopefully teach him some manners or some tact.  Yet Aaron’s focus on the past…on MY past…has also taught me an important truth.

The prophet, Haggai, helped with this as well.  I’ll explain.

Haggai was the first prophet that was heard in Israel after the Babylonian exile.  The Israelites had returned to Jerusalem and Haggai encouraged them to finish building the temple.  Fifteen years had passed since any work had been done on the temple.  God promised to be with them as the people agreed to once again build God’s house.

Yet later, as they stood at the site of the temple, God knew that the people were very discouraged.  He also knew why they were so down in their spirits.  So, God spoke to the leaders and to the people through Haggai.

Haggai 2:3 – “Who of you is left who saw this house in its former glory?  How does it look to you now?  Does it not seem to you like nothing?”

God, through His prophet, just cut to the chase.  He hit the nail on the head as He revealed openly what He knew they were thinking.  And what they were thinking was that compared to years ago, this beginning of a new temple looked dismal and ugly.  In fact, the Israelites…especially the older ones who remembered the former glory of the old temple…knew that the new temple they would build would in no way compare to the beauty of the past temple.

Who could help but be discouraged as they stood there remembering the glory that used to be, but would not fully be again?

But God didn’t just leave it there.  He continued to speak, telling the leaders to be strong, and ended by saying:

Haggai 2:4-5 – “Be strong, all you people of the land – declares the Lord – and work, for I am with you, declares the Lord almighty.  This is what I covenanted with you when you came out of Egypt, and my Spirit remains among you.  Do not fear!”

I’ll tell you that there are times and there are ways in which I am much like these Israelite Jews as they looked at their current circumstances and compared them to what used to be.  And for me it goes WAY beyond remembering my skinny days!

Ten years ago, God set Gary and I on a path of great hurt and loss.  The details are not what matter.  What matters is that God was surely with us each step of the way.  He did indeed tell us to keep working for Him in very difficult circumstances, just as He did to Israel.  He told us to be strong even when we were tired on every level.

What kept us going?  The two promises that God gave to Israel were ours as well.  God said, “I am with you…and my Spirit remains among you.”  I can promise you that God kept His promises to us.  His strength, His peace, His Spirit, was always present and enabling in our lives.  His Word was powerful!

I love what John Mackay says about God being with us: “This is what distinguishes the advice of the world, ‘Be strong.  I know you’ve got it in you,’ from the counsel of Scripture which recognizes that we have NOT got it in us, but that God’s presence with us will make all the difference.”

Circumstances can get very ugly sometimes, but I am not to focus on what’s around me.  I am to focus on God and on the fact that He is with me.  He will not fail me.  He will not desert me to my enemies or to my runaway thoughts.

God also gave Israel a simple three-word command.

“Do not fear,” God said.

Again, John Mackay: “The Lord’s faithfulness in the past and the present is the basis for future encouragement.  It is not the appearance of the building, but the presence of his enabling Spirit that will make the crucial difference.”

Not the appearance of the building.  Not my surroundings, but rather the God Who surrounds me with His protection in every way I need.

So, what’s your “Remember When?”

Remember when:  You were loved.  You weren’t alone.  You were important to that group.  You were included.

Remember when:  You had a job you loved.  You had the money you needed.  You made a difference.

Remember when:  You had your health.  You had your spouse.  You had your children close.

Remember when:  You sang.  You taught.  You were a part.  You mattered.

Remember when:  You had your parents.  You had a family.  You laughed.  You talked.

The list is endless, isn’t it?  Life changes.  Sometimes suddenly…other times, slowly.  But change is inevitable for all of us.

What doesn’t ever change is God.  His presence is with His children, steady and stable, always constant.  He’s the same yesterday, today, and forever.

When the past tries to capture my attention, I know I must look to today…to what God has for me today…to Who He is today…and to His promises that are true…TODAY!

And I can declare from experience that out of our deepest pain of yesterday will come our most beautiful usefulness TODAY!

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I’m Trying to Go HAPPY!!

Aaron and I sat down to play Skip-Bo the other night.  It’s a familiar nighttime routine for us on many days, this game of Skip-Bo.  As Aaron came to the table, I saw that he was carrying two bowls.  One was empty, and the other was full of Tootsie Rolls.  These Tootsie Rolls had been a sweet surprise from our friends, Jim and Joyce, this past Sunday.  Aaron was very happy to have been given such a huge bag of Tootsie Rolls, trust me!

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As we sat down to play Skip-Bo, while I was shuffling the cards, Aaron began unwrapping a Tootsie Roll.  He carefully took off the wrapper, and I then learned the purpose of his second bowl, the empty one.  He placed the Tootsie Roll wrapper into the empty bowl.  Soon he was ready for his second piece of candy, so he once again pulled on the wrapped Tootsie Roll, removed the paper, and carefully placed it alongside the first wrapper in the proper bowl. 

If there was ever a picture of how Aaron organizes his life, it would be in his use of multiple bowls.  I have blogged about this in the past, especially this piece from a few years ago.  It so fully explains Aaron’s use of bowls.  Put That in a Bowl!!

So as I watched him eat his Tootsie Rolls while we played Skip-Bo, I was once again reminded of how Aaron wants……no, he needs……his life to be just a certain way.  We all do that to some extent, but for an individual with autism, those needs are ever more acute.  The smallest disruption in routine and expectations can totally pull the rug out from under Aaron. 

Providing some fluctuations in his day and in his life can actually be very good for Aaron.  Finding the balance, though, is tricky.  Giving him consistency while also guiding him through changes can be very challenging for him, and definitely so for all of us who are a part of his life.

The staff at Paradigm can most assuredly attest to this fact.  They endure changing Aaron more than anyone.  Aaron can be very up and he can be very down at his day group.  Sometimes we see and know the triggers, and sometimes we don’t.  They have seen the good, the bad, and the ugly from Aaron during his nearly 11 years there. 

Aaron has been home this week with a bad cold.  He totally loves staying at home and would do so every day if we let him.  But like I said, Aaron needs to be away from routine and predictability in order to grow and to thrive.  He has friends at his day group and staff that he loves, but the atmosphere there is active and sometimes loud.  He can’t totally control his environment there……what people say or do……what activity he will participate in that day……how he will feel.  So for Aaron, staying home is much more preferred, but is not at all what he needs to do every day. 

He was well enough to return to Paradigm yesterday, on Friday.  I could tell he didn’t really want to go……didn’t want to think of leaving home for the day.  I was encouraging Aaron to keep a good attitude as I poured his morning coffee under his watchful eye.  He watches to make sure I do the coffee job JUST RIGHT!

“Mom,” he finally said.  “I’m not trying to go MAD!  I’m trying to go HAPPY!”

Wow!  His insights floor me sometimes.

He really wants to process life correctly.  Sometimes, however, it’s just a huge stretch for him to be able to do that. 

For Aaron, it’s Tootsie Rolls in one bowl and Tootsie Roll wrappers in another bowl.

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He can control this business of candy and candy wrappers.  He can’t control, though, his atmosphere at his day group.  Some days it’s just too much.  But we must gently push……must keep trying……must understand how hard it can be for him.

He had a great day yesterday at Paradigm.  They went to watch Rogue One at the theater.  Well, I’m not sure if it was a “great” day, but Katie told me that it was a good day……and to me, that’s great. 

Gary and I had Aaron with us at Sam’s on Monday.  I was checking out the asparagus when Aaron walked up to me with a bouquet of flowers, his face all smiles while Gary watched in the background.  Gary had pointed out the bin of flowers to Aaron, and Aaron instantly wanted to buy me some.  We’ve watched those Iris’s this week, some blooms falling off as they wilt while other buds burst into bloom.

Again, just like Aaron.  We wait for him to grow……hopefully to bloom……and in the mean time we enjoy him and his unique, colorful life that we see every day. 

Candy and wrappers…….buds and blooms……it’s all part of what makes life with Aaron both challenging and beautiful.   

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New Year, Old Ways

A new year is upon us!!  Welcome, 2017!

A fresh start can be so nice.  New everything.  Out with the old, right?  Well, not always, as I have seen on the past two days.  We all know that to be true.

I ended my old year on a most familiar note…..playing SkipBo with Aaron right before bed.  I guess that’s our version of a party, which suits Aaron perfectly as he really does NOT like parties.  Parties have too much noise and emotion for him, thank you very much.  But SkipBo with Mom is orderly, predictable, with nice piles of sequential numbers, and plenty of opportunity to cheat.  Yes, cheat, of which Aaron is a master if not watched closely.

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The next morning, our New Year morning, saw Aaron blandly staring at me as I very happily wished him a Happy New Year!!  His lack of expression at these moments is often hilarious, but I can’t always laugh because he finds that emotional expression irritating or he thinks I am laughing at him.  Which at times I am, but in a good way that he just wouldn’t understand.

Anyway, Aaron’s main concerns on our New Year morning were:

1)      Can I have FOUR cups of coffee?  (Don’t worry.  The cups are half full).

2)      Are there coupons in the newspaper for me to cut?

3)      What time are we going to Chili’s for lunch?

Aaron had opened a gift during our family Christmas Bingo game.  The gift was a Chili’s gift card that was burning a hole in…..well, in my wallet because I don’t dare give Aaron gift cards to keep.  They won’t keep with him.  They will be lost or given away.

I told Aaron that we would go to Chili’s after church.  He wanted to know the exact time, so I gave him my usual ball park figure and he was happy.  He was not so happy with the coupons in the paper for some reason.  Still slow from his cluster of seizures on Friday night, the coupons did not make him show his usual sense of purpose.  However, he settled in on the floor with his coupon trash cans as he sat on his coupon pillow with his coupon scissors…..and his FOUR cups of coffee on the bench nearby…..and he began to clip the coupons, very slowly.

I was in the bathroom later when Aaron came to the door.  “Mom,” he slowly began.  “I was cutting coupons but there were too much.”

Pause.

“OK,” I responded.

Pause.

“There were too much,” he repeated.

“Yes, there were a lot today,” I replied.

Pause.

“There were too much coupons,” he said again.

Pause.

“There were too much,” he once again asserted when he got no Mom reply.

Pause.  Sigh from me.

“Aaron, just take a break.  You can finish them later,” foolish Mom said.

Pause.

“I ripped them,” Aaron flatly replied.

Pause.  Another sigh from me.

I was following Aaron’s train of thought, one all too familiar.  He didn’t want me to cut those coupons.

“Because you don’t do them right,” he continued.  “You don’t cut them straight on the line like I do.”

He made his exit on that note.  No surprise from me.  It might be a New Year, but we are still living in our old ways…..always, always.

And sure enough, there on the family room floor lay his unfinished little stack of coupons……ripped, just like he said.  Aaron’s thinking has always been this…..that if he can’t cut the coupons, NO ONE will cut the coupons.  Especially Mom, who is a dismal failure at coupon cutting.

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Those ripped coupons were a stark reminder to me that just under the surface with Aaron there is always that issue of how he handles stress in his life.  He reacts, and often his reactions are very inappropriate.  His behaviors are a huge concern to us.  So I stood there being reminded that we were on our first day of a brand New Year, brand new beginnings, brand new opportunities……and here we were, being slapped into our old reality of life with Aaron.

Some things just never change.  We know that.

But there were other reminders of wonderful things that never change, either.  Gary and I finally got to church on time.  Yes, we were one of THOSE people who totally didn’t see the memo on the changed time for church……one of THOSE people who didn’t give New Year’s Day a second thought…..and so on this New Year’s morning we drove to church TWICE.  And we laughed at ourselves.  We’re HOW old?!

Anyway, we walked into church to the hugs and handshakes of sweet friends.  And there was Joyce, who handed me a bag containing a huge bag full of Tootsie Rolls…..for Aaron, because of my recent Tootsie Roll blog.  How unexpected and sweet, in more ways than one!  Later, Aaron was also surprised and full of smiles at this kind gift.

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The care of friends is unchanging in our lives.  Such a blessing!

The worship and the message on our New Year’s morning was encouraging and challenging.  And we sang one of my most favorite songs – Great is Thy Faithfulness.  What a wonderful reminder of God’s unchanging faithfulness in our lives!

And later, as we sat with Aaron at Chili’s, Gary and I watched him ever so slowly eat his enchilada lunch and his salad.  His joy at eating out was very evident.  Never changing, his love of restaurant food!  And seeing that joy is always fun for us, despite our constant reminders to him that he doesn’t need to take 17 toothpicks…..don’t stare at the other people and their food……don’t make noises…..don’t clap…..please don’t loudly stretch when you get out of the booth.

Never changing.

I was able to salvage a few coupons later from the ripped pages.  I didn’t let Aaron see me as I quickly cut them out behind his back.  And I know that we will continue to try to salvage good out of the bad days that Aaron will surely have this year.  It’s our reality with Aaron, New Year or not.

But through it all I know, like that favorite old hymn says, that God will remain the same, too.  Faithful to us, as always.

 

            Great is Thy faithfulness, O God my Father,

            There is no shadow of turning with Thee;

            Thou changest not, Thy compassions they fail not;

            As Thou hast been, Thou forever wilt be.

 

            Great is Thy faithfulness!  Great is Thy faithfulness!

            Morning by morning new mercies I see.

            All I have needed, Thy hand hath provided.

            Great is Thy faithfulness, Lord unto me.

 

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I’ll Go Happy

Last Monday, Aaron had a rough and grouchy day at his day group.  Sometimes we can pinpoint the cause and other times we just can’t.  I’m so thankful for the understanding staff at Paradigm.  I don’t know how they do what they do on some days, but I do know that they don’t get paid enough for all they endure on those days.  I love their philosophy:  Tomorrow is a new day and we start all over.

As I said goodnight to Aaron at the end of his rough day and gave him a hug, Aaron said, “Mom, tomorrow I’ll go happy!”

So on the next day, the new day in which we were starting all over, Aaron was indeed happy.  His attitude was entirely different than the no good very bad yesterday.  And on this better day we also got some wonderful news from our daughter in Houston.  She has a break between jobs and was coming home for a visit!!!!  Not only Andrea was coming, but also her boyfriend Kyle!!!!  Not only Andrea and Kyle were coming, but also Andrea’s two dogs and Kyle’s dog!!!!!   

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Can you tell I was excited?  You bet!  Aaron was excited, too.  He loves and misses his sister.  He’s getting to know Kyle and to realize that Kyle is a new part of our family.  But oh, I know Aaron and I know that having a house full of people and pets can be challenging for him.  We face this issue any time that we have extra people around…..extra noise……extra routine disruptions……extra attention grabbers away from our usual main attention grabber.

We work to prepare Aaron for those disruptions before they occur.  I went over several things with him, like how he would use Gary’s and my bathroom while Andrea and Kyle were here.  We talked about the dogs and how we need to act with having four dogs in the house.  I tried to cover all the bases with Aaron, but Aaron brings out new bases quite often……based on what’s happening around him at the time…..things we just can’t predict. 

I let Aaron stay home from Paradigm on the two Paradigm days that Andrea and Kyle were here.  Aaron was SO happy with that idea!!  He loved going with us to eat lunch at Freddy’s.

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He loved going for a walk in Swanson Park.

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He loved being here with us and the doggies.

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He loved us watching Independence Day Resurgence with him while he ate snacks and snacks and snacks.

He loved trying to sneak snacks and snacks and snacks to the doggies.

He loved talking to all of us, especially to Andrea and Kyle, about all his favorite topics.  And this is where we usually start seeing some issues with Aaron, because Aaron doesn’t know when to stop talking.  Sharing the stage is hard for Aaron.  He truly wants to be included in our conversations as we sit around the dinner table, for instance.  We do listen to him and try to include him, but Aaron isn’t going to talk about the subjects that we talk about. 

Here is a sample conversation:  We may be talking about Andrea’s new job or talking about Kyle’s summer at sea.  Then Aaron will loudly call one of our names.

“Andrea!!”  he says.  When she responds to him, we often hear this from Aaron:  “Ummm.  Ummm.  Ummm.”  We wait.  “Ummm.  Did you know what the Queen Alien on Independence Day Resurgence looks like?!”

“No, Aaron, I don’t know what she looks like,” Andrea answers.

“Well, she looks like a…..I don’t know.  Mom, what do you think she looks like?” Aaron asks.

So I try to answer but I don’t really know how to describe the Alien Queen because it’s been awhile since I saw that movie….and I don’t really care what the Alien Queen looks like…..and in trying to muster some enthusiasm and interest in this question that I’ve heard a hundred times, Aaron can sense a shift in my emotions.  As much as Aaron struggles with social norms, he is very adept at picking up the subtle cues that we are not as animated about Alien Queens as we are about Andrea’s job or Kyle’s schooling. 

He views our world from afar, wanting so much to enter in, but never knowing how.  But he does express his frustration by comments that we later hear.

“Mom, you didn’t want to talk to me.  You just wanted to talk to Andrea or Kyle,” he will say. 

I try to explain that we do want to talk to him but that we haven’t seen Andrea or Kyle in so long…..and we want to catch up with them on their lives…..but to Aaron that doesn’t make sense.  Round and round we go, and where we land nobody knows.  Or when we land.

Which happened on Friday during supper.  Andrea’s friend, Sarah, had come over to see Andrea and Kyle.  They sat in the family room visiting and talking and laughing.  Aaron was up in his room, then down in the family room…..up in his room, down again.  He wanted to be a part and he was in many ways.  He just can’t be the whole part and so conversation would swirl around him.  Kyle was talking and laughing at one point, and Aaron whacked Kyle’s leg with a book.  I heard it but didn’t see it.  It was a sign of things to come.  Aaron was frustrated now, truly frustrated, and when that happens he picks a target.  Lucky Kyle.

I don’t remember all the details of what happened at supper.  I was up from the table getting slices of cheesecake ready to serve.  Aaron was at a boiling point and we didn’t realize it.  His system was on overload…..his pressure gauge was maxed out…..and he erupted.  He leaned forward and yelled at Kyle. 

Aaron left the table.  We apologized to Kyle.  He was understanding and patient.  Aaron came down later and apologized.  We watched the movie later and Aaron was very happy, as if nothing ever happened.

Why do I tell you this story, one you’ve heard before if you’ve read this blog for very long?  Because this scenario is just a very real picture of how Aaron processes…..or doesn’t exactly process…..the world around him.  Our world is ticking along like normal, but Aaron’s isn’t.  He is so impacted by nuances that we don’t even notice.  Sounds…..loud laughter that he doesn’t understand…..hilarity……silliness…..his routine changing….   All these things greatly affect him, more than we can begin to know. 

So he reacts, usually loudly and hurtfully.  Then he’s sorry.  It takes great understanding, as I’ve said, to deal with this about Aaron.  He doesn’t think like we do or process as we do or react over time as we do. 

But he truly wants to. 

Andrea and Kyle left to go back to Houston the next day.  Aaron was with us in the driveway, entering into things, when Andrea asked for a hug.  Aaron ducked his head and walked away, through the garage and into the house as he muttered to himself.  A hug in front of everyone?  Are you kidding me?!  We know this about Aaron and it makes us smile.  He can yell, but spontaneous hugs are very, very difficult.

One of the first things I did after they left was to get Aaron’s things put back in his bathroom.  “Us kid’s bathroom,” he calls it.  We got his cup with his toothbrush and toothpaste put back on the counter.  We got his body wash and wash cloth back in the shower.  We hung his towel on the towel rack. 

Aaron then noticed that his razor attachments were not in the correct place.  He rearranged them the way he wanted them.  He stood back and observed the counter for a few seconds. 

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Then he said, “OK.  It’s looking good.”

That night at supper, Aaron asked the blessing.  He nearly always says two things when he prays.  He doesn’t say the same thing with each prayer, but he says two things.  On that night he said, “Lord, thank you for the food.  And thank you that Kyle and Andrea got to come.”

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Yes, it was looking good now for Aaron.  He was happy that Andrea and Kyle were here, along with Darcy and Oakley and Aries and our own Jackson.  He will be very happy when everyone comes for Christmas. 

Aaron will have every intention of saying, “I’ll go happy!” 

He’ll go happy into our family time, but it will be a time of upheaval for him and of struggle as well.  It’s up to us to understand that and to allow that for Aaron, all the while trying to help him know how to take time to decompress and not to blow up. 

Only when things are back to normal…..Aaron’s normal…..will he be able to step back and say, “OK.  It’s looking good.”

And it’s very important for us to be able to look at Aaron’s world through Aaron’s eyes, and still be able to say, “OK, Aaron.  It’s looking good.”

Let’s go happy!  It’s sometimes the hard choice, but always the best choice. 

Pass The Kleenex

Aaron has just recovered from a nasty virus.  It was nasty in more ways than one.  He felt terrible.  He had a stuffy head.  He had a sore throat.  He ran a fever.  He had some seizures.  All of this is definitely nasty.  But there is another level of nasty with Aaron when he has a cold……a level that I have written about in the past.

Aaron would not blow his nose.  We’re not totally sure why he won’t blow his nose, but he just refuses.  Therefore, as I wrote before, Aaron snorts.  It’s very disgusting and annoying.  Nasty.  For me, for Gary, and for anyone else within hearing distance.

I told Aaron over and over how much better he would feel if he blew his nose.  I finally resorted to telling Aaron over and over how much better his dad and I would feel if he blew his nose.  Aaron wasn’t particularly interested in how we felt, however, so the snorting continued.  He wasn’t even interested in the fact that blowing would help HIM feel better.

Until finally, one day, my words got through to Aaron’s stuffed up head.  He blew his nose.  He actually, for real, blew his nose.  I praised and praised him as if he was a small child who had just gone potty for the first time.  He looked at me as if I was an irritating gnat, so I backed off the vibrant praise and tried to be very flat and factual, which Aaron much prefers.

“Good job, Aaron,” I said with a level voice.  “Doesn’t that feel better?”

“Yeah,” he said as he walked away.

The next time he blew his nose, I asked to see the Kleenex.  He knew then that I had surely lost my mind, but I told him that the color of the mucus could tell us if he had an infection.

Sorry for being gross.

But Aaron held out the Kleenex very gingerly and I peeked at it, made a comment…..we don’t need details……and off Aaron went.

Aaron marked that information down, though, as a way to keep reminding us that he wasn’t feeling well.  When he’s sick, we hear over and over the same four word comment from him:  “I’m not feeling well.”

“Mom!” he said soon after the mucus color test.  “I blew my nose and it was GREEN!!  That’s how I’m not feeling well!”

I wanted to tell him that’s how I’M not feeling well now!

I heard a lot from that point on about green nose stuff.  We were still in a nasty mode, but at least it was in a Kleenex now.

Speaking of……Aaron did with his nose blowing what he does with everything in his life.  He developed his own way of doing this task.

He had to have a box of Kleenex with him at all times.  Not a few Kleenex, but a box.  A box at his desk.  A box on the end table beside his TV chair.  A box on the kitchen table while we played Skip-Bo.  A box on the nightstand beside his bed at night.

And not only a box of Kleenex.  He also had to have a trash can in which to place the dirty Kleenexes after blowing.  And not just any trash can.  It had to be his trash can from his room.  His trash can beside his desk.  His trash can beside his TV chair.  His trash can beside the kitchen table while we played Skip-Bo.  His trash can beside his bed at night.

When he finally felt better and was able to return to his day group, he was still needing to blow his nose.  By now his nose blowing was routine for him, but also done in just his routine way.  So he told me that he needed to take a box of Kleenex with him to Paradigm on his first morning back.  I agreed, and Aaron was very happy about that, as you can see.

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He marched into Paradigm that morning, box of Kleenex in tow, ready to start his new week.

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“Barb!” he said as he barged into her office.  “I’m blowing my nose!  I brought a box of Kleenex!”

Barb laughed and I explained.  She knows Aaron well enough to understand that this was a big moment for him, and to not question the box of Kleenex.

I was just thankful that Aaron didn’t insist on taking his trash can!

Aaron has blown and blown and blown this past week.  We hope his nose blowing hang ups are a thing of the past.  We definitely hope that his snorting is a thing of the past!!

And once again we just watch as Aaron decides to own something like this…..and to really make it his own, in the unique way that totally suits him.

Gary and I are once again along for the ride, shaking our heads and laughing when Aaron can’t see or hear us.  Even something as mundane as nose blowing becomes a picture of just how unique Aaron is.

Pass the Kleenex.

The BOX!!
 

Black Lettuce

There are some things that I can always count on with Aaron.  He will always write down the time he gets up in the morning and the time he goes to bed at night.  He puts these times in the notebook that he keeps by his bed, on the floor.  Always on the floor.  He will always only read at night.  He will always keep his tennis shoes on his floor in front of his trash can, placed just so-so.  He will always ask at night if it’s going to rain and if I’m going to have the monitor on, to listen for seizures.  He will always want four cups of coffee in the morning (they’re not full, but there must be four!).  He will always finish a song we’re listening to before he gets out of the van.  And he will always want a house salad when we eat in a sit-down restaurant.

In fact, as soon as his bottom hits the seat…..before our host or hostess can say a word…..Aaron looks up and says, “Can I have a house salad?!”  So I have to run interference and rescue the confused host or hostess by telling Aaron that he needs to wait to order his salad.

When the host or hostess comes back with our water, Aaron once again looks up and asks if he can have a house salad.  Never mind about ordering his meal.  His salad is of prime importance, and once it is ordered…..with Ranch dressing and no croutons…..then he can get on with the business of looking over the menu and making his meal decision.

A couple weeks ago, as Aaron ate his house salad in IHOP, he said, “I like this salad.  The lettuce is black and yellow.”

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I smiled and thought that of course the lettuce looks black and yellow to Aaron.  He’s color blind, and so not only did the lettuce look black and yellow to him, but black and yellow lettuce made perfect sense to Aaron.

Just like so many other things in Aaron’s life, I thought.  We don’t see it quite like Aaron, but to Aaron his view of things makes perfect sense.  The rest of us are left to figure those things out and understand them.

Here are some recent examples:

THE SATELLITE CLOCK!

It’s actually a satellite weather station that Aaron had on his desk.  He loved it.  He especially loved the precise time it kept, and the display of the outdoor and indoor temperature.  He kept a close eye on those temperatures.  One Saturday morning, Aaron came downstairs, looking troubled.

“Mom,” he began.  “My clock says that the temperature is 13!”

I knew he meant the outdoor temperature, because that’s the only temperature that he keeps track of.  Since it was summer, I also knew that something was very wrong with his weather station.  And since something was very wrong with his weather station, I knew that something was very wrong with Aaron’s world.  Since something was very wrong with Aaron’s world, I knew that something was about to very wrong with Gary’s and my world.  That’s how these issues work.  A domino effect, you know.

The planet was definitely out of kilter for the remainder of that day.  Aaron came downstairs repeatedly, telling us that the temperature was wrong.  I finally asked, “Aaron, can’t you just ignore the temperature?”

Aaron looked at me with no expression, but I could see that he thought I was very off balance.  “Aaron, can’t you just ignore the temperature?” I asked again.

“No,” was all he answered as he turned and walked away.  Life had become very hard for Aaron at that point.

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Gary worked on the outdoor sensor, to no avail.  Later, Aaron came back downstairs and told me that he wanted to take a nap.  I agreed, and he started to walk away.  But he stopped, turned around, and said, “I would take a nap.  It’s just that my clock says 97.”

So the temperature had jumped from 13 to 97?  Neither of those temps was correct, as Aaron knew all too well.  However, I assured him that he could really take a nap regardless of the temperature on his clock.

He turned to walk away once again, but once again stopped.  Turning around, he said, “I would take a nap, it’s just that……”  What he left unspoken spoke volumes.  It’s just that his clock was sitting on his desk showing the wrong temperature, and to Aaron that clock was screaming, “ALL IS NOT WELL IN YOUR WORLD!!!!  WE NEED TO MAKE IT RIGHT!!!!”

Bless his heart, Gary made it right.  He ended up buying a new clock that shows the outside temperature, and now all is well.

 

THE TV SERIES!

Aaron got all nine seasons of The X-Files for his birthday and for Christmas last year.  He finally, after several months, finished watching all nine seasons.  But then one day in Wal-Mart he found the new tenth season.  He still had a Wal-Mart gift card, so I let him buy season 10.  Those of you who know Aaron well can guess what happened.

Aaron had to start watching the whole series again, beginning at season one.  You don’t simply watch season 10, people.  You must watch the series in order.  Season 10 must come after season 9, which comes after season 8, which comes after……

You get the idea.  He had to watch the whole series again.

The  WHOLE.   SERIES!!!!!!

I think he’s just beginning season five right now.  I so hope there is not a season 11.

 

THE EXPIRED COUPON!

Aaron cuts out my coupons that are in the Sunday paper.  He is extremely meticulous, trying very hard to cut only on the dotted line.  No shortcuts are allowed.  He is sure that he is the only person in our house that cuts coupons correctly.  We have lots of coupon stories that we could tell.

Anyway, the other day I was taking expired coupons out of my coupon box.  I had a pile of coupons that were of no use any longer.  Aaron walked in the kitchen and spied the pile of coupons.  He asked what I was doing with them, making me feel like I was partaking in something forbidden.  So I explained that I was sorting out the expired ones.

“What are you going to do with them?” he asked suspiciously.  I told him I would throw them away.  He stood over me staring at the coupons that I was laying out to be tossed in the trash.  That’s when he saw it……the coupon that somehow was not exactly cut on the dotted line.  I’m sure he thought it was one that I had cut out, since he knows that Mom is a very sloppy and careless coupon cutter.  He reached over and gingerly picked the offending coupon out of the mess laying there.

Then he went over to the kitchen drawer, opened it and took out his scissors, walked back over to me, and began to cut that coupon on the dotted lines…..the way it was intended to be cut!

He didn’t care when I reminded him that I was just throwing that coupon away.  He didn’t care when I told him that the coupon was expired and of no use anymore.  He didn’t care that I told him he was just wasting his time.  He continued to carefully cut off the extra little strip of paper and let it fall into the pile of expired coupons.  Then he took the coupon that he had just corrected, laid it on the rest of the coupons very methodically, put away his scissors, and walked away as if all was well with the world.

Because for Aaron’s world, things were made well at that point.

Silly Mom.

 

THE ICE CREAM!

My last example…..for now…..is Aaron’s bowl of ice cream.  This past Friday night we were getting ready to watch a favorite TV show, Blue Bloods.  Aaron was with me earlier in the day as we bought some groceries.  I bought him some Mint Chocolate Chip ice cream that he wanted, so before Blue Bloods started he asked if he could have a bowl of his new ice cream.  I got his ice cream and handed him the bowl as he sat in his favorite family room chair.

I was in the kitchen for a few more minutes.  When I walked back into the family room, there sat Aaron is his chair……but he wasn’t eating his ice cream.  He had placed the bowl on the ottoman in front of him.

“Aren’t you eating your ice cream?” I asked him.

“Not yet,” he told me.

And it hit me.  Aaron was doing with his ice cream what he also does with his popcorn at the theater.  He was waiting for Blue Bloods to begin before he would pick up his bowl and eat his ice cream.  I watched him.  Sure enough, the second that Blue Bloods began, Aaron reached over and picked up his bowl of ice cream.  He ate every bite and loved it…..but not until it was just the right time to do so.

 

You see, life for Aaron has certain rules.  He doesn’t walk around explaining those rules to us, but we’ve come to know them well since we have lived with autism for so long.  Someone else wouldn’t get it at first, but trust me when I say that Aaron would educate them soon enough……and at times maybe not so kindly.

Strange how he has precise coupon cutting and ice cream eating rules, but his rules of etiquette and relationships can be sadly lacking.  How he can’t nap when his clock is showing the wrong temperature, but he can sleep soundly at the end of one of his rough behavior days.  How he will take weeks and weeks to re-watch X-Files so that he can keep the seasons in order, but saying a simple “I love you” is so difficult for him.

It’s just like his salad with the black and yellow lettuce.  Sounds pretty weird to us, even yucky, but not to Aaron……because that’s just how he sees it, right there in front of him.  The salad tasted fine, no matter the color.  And the taste was what mattered to him.

So Aaron’s ordered world is what matters to him, too.  Ordered in his way that he understands, because that’s just what he does and it’s really all he can do.  He’s come a long way and made lots of improvements, but Aaron is Aaron.

And sometimes we’re the ones who need to improve, honestly.  Improve in our acceptance and our understanding of Aaron, not expecting him to bend to us but instead be willing to bend to him.  Our way isn’t always the only way, in many areas.

But I draw the line at black lettuce.  Not gonna do black lettuce.

Yellow, maybe……but not black.

Well…..maybe just a taste.  It might surprise me.  ♥