Category: Understanding

Aaron’s Lost Order

One day last week our exterminator was coming.  Aaron’s favorite storage place is his bedroom floor, so I had reminded him to clear his floor before we left the house.  

Soon a very upset Aaron came bounding up to me.

“Mom!!” he angrily said, “I lost the order of books!!”

When I walked into his room, I saw this.

His large stack of books had taken a tumble, ruining the careful order that Aaron had put them in.

I knew not to dismiss what to us would be no big deal.  To Aaron, this mayhem was a HUGE deal.

We got the books put on his bed as I assured him that he could restore the order when he came home later that day.

This is a perfect picture of our life with Aaron, more so lately than perhaps ever before.

Aaron has a rhythm to his life that he creates.  His routines and methods are vital to his happiness.  

We know better than to discount his routines.

There is always a balance in our life with Aaron as we seek to help him manage disruptions while at the same time validating his concerns…concerns of his that can lead to serious anger outbursts from him, which in turn lead to disruptions in our life.

Sadly, Aaron isn’t concerned about the effects he has on us.  Autism often manifests itself as narcissism in Aaron and in most others that I know who struggle with this condition. 

I have always said that physical disabilities are much easier understood than behavioral ones.

For instance, we have sadness and sympathy for Aaron when he has seizures.  The interruptions in our life that seizures might cause when we must change plans are clearly understood.

But when Aaron loses the order in his life that he has created he reacts with anger that sometimes becomes rage.  Nothing we say or do at that point has much if any effect.

I know when Aaron has a seizure that I can’t tell him to just wake up and come take a walk with me.  He understandably is unable to do that.

But I must also know that when Aaron has an emotional meltdown over something that has upset him, I can’t tell him to just get over it and stop being ridiculous.  He understandably is unable to do that either.

Except most of the time, at least on paper, his behaviors at those times are not understandable to most people.

My husband and I understand what is upsetting Aaron, most of the time, better than anybody.  

But again, those behaviors of his…goodness, they take a toll on us some days.

Autism surely is full of puzzle pieces, but we don’t have a picture on the box to tell us what the finished puzzle will look like.

And the pieces keep getting rearranged as Aaron’s order from day to day gets lost in one way or another.

Sometimes, though, a sweet picture starts taking shape from all those random pieces that we’re trying to fit together.

Despite lots of anger lately about having to fit his precious nephew and niece into his life and how their being here at our house causes his order to be mostly lost, he does often pull it together and shows his caring side.

Saturday evening, I watched Ryker climb up on Aaron’s bed and hand Aaron his current favorite Golden Book.

Aaron took the book and started reading Goldilocks and The Three Bears.  

When I read that book to Ryker, I use all the voices.  Papa Bear has a deep voice.  Mama Bear has a medium voice.  Baby bear has a little baby voice.  Ryker does the same when he “reads” it to us.  

When I read it to Ryker, though, we don’t make it through the whole book in one sitting because Ryker is soon off and running to his next adventure.

So, there was Aaron propped up in bed with Ryker kneeling on the bed nearby staring at him.  Aaron began to read Goldilocks and The Three Bears.

Except Aaron read the story with no inflection in his voice…no deep voice or medium voice or baby voice.  

No excitement.  No change in his voice when he read a question.  

Just a monotone monologue.  It was really hilarious.

And Ryker didn’t move a muscle.

Maybe he was in shock.  I have no idea.

But for the first time that I have seen at our house, Ryker let Aaron read the whole book.

I think Ryker senses a difference in Aaron but in his innocence, he accepts his Unkie Aaron just the way he is.

Oh, that we could all do the same!

Especially when Aaron’s life, like his stack of books, has lost its order and we think we might lose our minds.

Ryker let Aaron finish reading his book.

Sometimes we need to let Aaron finish his book with us, too…to try to understand him as we listen to his anger and his words.

To accept Aaron as he is while still trying to teach him and show him that there are other ways to manage life when he loses his order of books.

Uncie Aaron…His Buddy and His Burden

Time waits on no man, Chaucer said.  Time waits on no child, either.  We see this clearly as we watch Ryker growing.  Pictures from a few months ago compared to now show his physical growth.  New words and speaking in sentences show his intellectual growth.  

It brings joy mixed with a dose of sadness as all parents and grandparents know very well.

Ryker and Aaron’s relationship is also growing with time.  We have seen great strides on Aaron’s part in his friendship with his little nephew.  

Sometimes Aaron sees Ryker as his buddy.

Aaron still loves giving Ryker snacks.

Screenshot

He didn’t even mind Ryker taking his favorite chair one day.

They play funny make-believe games.

Wear goofy hats of Aaron’s.

Watch cars zoom down the track.

Do chalk drawings.

Laugh at silly cartoons.

Thoroughly enjoy water balloons.

Blow dandelions.

Play music.

Occasionally share the playset.

Fly a plane.

And one of the best is when they watched our fireworks on the Fourth.

It’s just the cutest thing to see Aaron look at Ryker and say, “Ryker!  Come on!”  Then to see Ryker bolt as fast as he can on his little legs to run with Aaron up the stairs to Aaron’s room where all sorts of fun and unique gadgets await his exploration.  

And snacks that are new to Ryker!  Dots!  Red Hots!  Pistachios! 

And gum!  

So, you can see that we must monitor things closely, sometimes much to Aaron and Ryker’s frustration.

But for all the positive steps forward, Aaron still carries the burden of his autistic way of processing his world and how others impact it.

Aaron sends mixed signals to Ryker.  One minute he might be happily allowing Ryker to play with one of his cool toys and the next he might yell no to Ryker for touching another treasured item.  

Aaron can be hurtful with his words during those times, and inappropriate.  

Therefore, we must also monitor those moments as we try to foresee certain triggers that might upset Aaron.  We’re just never totally in the clear and probably never will be.

Yet, again, the progress Aaron has made truly gives us much for which to thank the Lord.  

The challenges cause us to seek God’s patience and wisdom as well.

Speaking of prayer, this has been one of the sweetest and funniest areas of Uncie Aaron and Ryker’s relationship.  

Aaron has never forgotten a silly prayer that he heard in an old Don Knott’s movie when he was a child.  He sometimes yells it out when we get ready to ask the blessing before eating.

“Rub-a-dub-dub!!  Thanks for the grub!!” 

No amount of correction on our part has kept Aaron from blurting that out sometimes.  So, you guessed it.  One day as we all sat at the table and joined hands, Aaron gleefully yelled, “Rub-a-dub-dub!”

And Ryker, without missing a beat, chirped “Rub-a-dub-dub!!”

Let’s close our eyes to pray now…and let the adults grin real big!

Every night as part of Aaron’s bedtime routine, we join hands and pray.  Ryker has joined us before.  One night I asked Ryker if he wanted to pray with us, so he scurried up on the bed, took our hands, and immediately launched into his own prayer.  We didn’t understand much of what he said, but it was precious in God’s eyes, I know, and certainly in ours.  

Andrea shared with us Ryker’s prayer one night at their house.  I had come over to help with the baby.  Laying in his bed before he went to sleep, Ryker prayed:

“Dear Jesus, dank you Gramoo.  Dank you Uncie Aaron.  Dank you donuts.”

Out of the mouths of babes.

Dear Jesus, dank you Uncie Aaron.  Even in the frustrations…the continual training that sometimes never seems to take hold…the corrections…the monitoring…

May we see the joy he also brings…the laughter…the delight at the simplest things that we often overlook.

And the huge progress he’s made in his role as Uncie Aaron.

Let’s not forget donuts!

Rub-a-dub-dub!!

Another Lunch With Aaron

“Where are you eating lunch today?” asked the ladies at the front desk as Aaron and I left his Epilepsy doctor visit.  

“Chili’s!!” Aaron answered excitedly.

“Oh, I love Chili’s,” one said.

“I want to go to Chili’s!” added the other.

Aaron chuckled loudly as we left the waiting room, me warm with their always welcoming chatter with Aaron…and Aaron walking with purpose now because finally we were going to lunch!  After all, eating out is the real objective of every doctor appointment, at least for Aaron.

Soon we were pulling under a shade tree in the Chili’s parking lot, where Aaron was quickly opening his door while I quickly told him to wait on me.  He did, thankfully, and together we walked in the door.  

Curious stares greeted us as Aaron barreled in and had eyes for only one thing…the toothpick dispenser.  You see, Aaron “collects” toothpicks, so he makes a beeline in every restaurant to the sharp little prizes he knows are on the front counter.  He proceeded to increase his collection while I trailed slightly behind him, trying to greet the host while simultaneously attempting to discreetly tug Aaron away from the toothpicks.  Aaron was unaware of the host saying hello or of the all-too familiar looks he was receiving from the puzzled host.  He was too busy stuffing toothpicks in his pocket, but he did have presence of mind enough to tell the host we wanted a booth while I reminded him that any seat was fine.  

I was just happy to finally be seated.  Our server appeared quickly.  I could tell right away that he was comfortable with Aaron, and I hoped that attitude would last.  We were still early into his Aaron experience and one just never knows.

“Hello,” he happily said.  “My name is Luke and I’ll be taking care of you today.”

“Can I have a salad with NO croutons and TWO ranches??!!” Aaron bellowed.  

And for at least the millionth time I reminded Aaron that our server was taking our drink orders now.  Food orders would come later.

“Oh OK,” Aaron replied as if this was new news.  

Our waters came and the instant Luke asked if we were ready to order…

“Can I have a salad with NO croutons and TWO ranches??!!”

I guess I don’t need to tell you whose order that was.

Luke was smiling broadly as Aaron continued his order.  Aaron always asks IF he can have the menu items he wants, as if he needs permission from the server.  I don’t even try to correct him anymore.  I figure it’s part of Aaron’s charm.

We munched on chips and salsa while waiting for our meals, Aaron pretty much talking non-stop.  Luke was very attentive and kind, checking on us often with a big smile. 

A few young men walked by our table.  The stare one of them gave Aaron made me want to tell him to take a page out of Luke’s playbook.  Aaron is NOT an alien so quit looking at him like he is, I wanted to yell.  Although as I have often said, Aaron would think looking like an alien is super cool!

 I did have to monitor situations sometimes as we sat in our booth that Aaron wanted.  He turned to stare at the people sitting near us, uncomfortably so, and I had to remind him to turn around and not to stare.  

“I just wanted to see what they were eating,” he explained.

Then came the reminder to not point at the large group of people behind me as he informed me that they must be having a party.

“But I just think they’re having a party,” he told me as he pointed again!

Luke stopped again to check on us.

“Can we have chips and salsa to take home??!!” Aaron loudly asked while I protested and Luke said, “Sure!!” much to Aaron’s happy laughing delight.

Finally, Aaron was full, and we were ready to go.  As we stood up, Aaron edged slightly close to the woman in the booth behind us as he stared down at her plate.  I was trying to gently pull him back.  Her husband eyed Aaron suspiciously and I hoped to catch his eye and apologize but he was fixed on Aaron.

I again explained to Aaron how inappropriate and embarrassing that was as we walked away while he again explained that he just wanted to see what she was eating.  

And again, I ran interference as we passed the hostess desk, and he smelled the scent of those toothpicks.  I succeeded in averting the toothpick theft this time as the eyes of the host eyed Aaron once again.

We made it inside our hot car.

WHEW!!

Another lunch on the books.  

Another group of people with varying impressions of our Aaron.

Another reminder that when an Aaron walks into your life for even this brief time, just smile like Luke…disregard Aaron’s pointing…understand that he is curious about other people’s plates and parties…and whatever you do…

DON’T STARE!!

I just might let him point at you and stare back!  

Much To Them

Some time ago I was fixing Rice Krispie Treats.  Aaron stood and watched for a minute, and then asked if he could eat some marshmallows.  Since I have never been a big fan of eating marshmallows that aren’t in Rice Krispie treats or in my holiday fruit salad, I told him that I wasn’t sure if he would like them, either.  He wondered why.

“Well, they’re mostly puffed sugar,” I told him. “There isn’t much to them.”

“There’s much to them to me!” he answered in no uncertain terms.  

Aaron didn’t realize it, but he had perfectly described how he runs his life.  What would probably seem superfluous to us is not viewed that way at all by Aaron.  Let me give some examples of what is important to Aaron in his autistic world.  Not just important, but absolutely necessary.

Aaron set the table one Christmas.  Look at his multiple forks and spoons.  At least he arranged them neatly.  He always requires several forks, spoons, and sometimes knives, no matter what he is eating.  There’s much to them to Aaron!

There is also much to the number of plates and bowls Aaron wants when he eats.  I’m so thankful for my dishwasher!

When Aaron “goes to bed” at night he reads, listens to music, works on his sticker book, and sometimes plays a game.  He starts this routine early.  A big element of his bedtime is to arrange special items on his bed in just the perfect spots and order.  This includes a stack of greeting cards that he has saved over the years, a cat book that he isn’t reading but that he must have on his bed, his back scratcher, and various items.  I just shake my head but there is much to them to Aaron!

Aaron was eating a bag of popcorn the other day.  Look at the bag and you will understand why Aaron kept telling us, “I love ridiculously cheesy popcorn!”  Or “Tomorrow I want to buy more of that ridiculously cheesy popcorn.”  And “I seem to like this ridiculously cheesy popcorn.”  What seemed ridiculous to us meant much to Aaron.  What’s printed on the bag is part of the name, people!  We just smiled.

Yet there are times when the things that mean much to Aaron can cause great frustration and anger when they don’t work out as he expects.  One of the biggest issues for him is when his schedule is disrupted.  Whatever…or whoever…causes the disruption is often the object of Aaron’s deep frustration.  His tongue can be hurtful, and his anger can be deep when things don’t go his way.  We work on that all the time and praise him when he handles change well, like he did at Christmas.

It’s easy to get very frustrated with Aaron when he won’t budge out of his routine…won’t quit talking about the same topic of interest over and over and over…runs out to our neighbors when they’re taking a walk so he can talk to THEM about said topic…won’t wait patiently for hardly anything…and so many other issues.

Autism is so complex, and everyone is different.  Yet every single autistic person has those tightly held focuses that are “much to them,” and they are not going to let go of those things.  

It’s best to try to understand that fact and then work with them with as much love and understanding as you can muster.  

I know from many years of experience with Aaron that it isn’t always easy, but it’s always best to attempt to approach issues from his viewpoint to better understand why on earth he’s reacting the way he is.  

And always, eventually…when the dust settles…to show him by my words and actions that he matters.

To show him that his unique ways are worth my time…that “there’s much to them to me.”

And therefore, Aaron, “there’s much to YOU to me!”

Important Uncle Aaron

It’s been way too long since I’ve given an update on Aaron in his life role of being Uncle Aaron.  All in all, Aaron has made great progress.  But our road with Aaron is never without some bumps…or sometimes potholes!

Ryker is now 19 months old.  He is talking and showing more of his cute personality.  Aaron is fascinated with this and is showing more interest in Ryker, which we all thought he would do once Ryker had a few more months under his belt.  Aaron sees him more now as a little fellow human and not just a strange little baby. 

Aaron loves giving Ryker food or toys, and Ryker is very happy to receive them.

Yet when he tries to get Uncle Aaron’s attention to get a response from him, Aaron doesn’t know what to do, so he doesn’t do anything.

 Aaron’s lack of response to Ryker is very similar to how Aaron reacts so often to us when we get a little too close for comfort, like wanting a hug from him or a confirming verbal response.  Aaron will often back away from anything that makes him show too much emotion, especially if it’s on our terms and not his.  

Aaron likes to show Ryker his special items, like these rocks that he wanted Ryker to see.

Ryker especially loves Uncle Aaron’s room because it’s full of all sorts of cool things to touch and pick up and pull or throw…sometimes to Uncle Aaron’s delight and sometimes to Uncle Aaron’s dismay.  But it really makes Aaron feel special to see how much Ryker loves his bedroom.  

However, despite all the progress Aaron has made, this little fellow human can still sometimes make Aaron feel like he has been displaced in our home and our lives.   

“Ryker takes away my importance with Mom,” he said to a friend one day.

It’s a very telling and heart-rending statement from Aaron.  He truly has had so many adjustments to make as he learns to share his life…our lives…with this new little member of our family.  

We all assure Aaron that his place in our family has not changed one bit.  I have told him that love isn’t divided; it’s multiplied many times as God brings new people into our lives.  A friend told me that her family has talked about how our hearts grow bigger as we have more people to love.  We don’t push anyone out, we just grow bigger hearts to make room for more people to love.

Aaron listens to these words, but he still struggles with wanting to be the center of attention.  When Ryker gets more attention, then Aaron feels like Ryker is more important in our lives.  It’s a fine balancing act for all of us.

Kyle, Andrea, and Ryker came over a few days after Kyle had returned from being at sea for 3 months.  For two solid hours, they both gave as much of their full attention to Aaron as they could.  This included getting on the floor to put stickers in Aaron’s sticker book with him.  And listening to Aaron talk literally non-stop about all his interests.

Their understanding and patience with Aaron mean the world to us. 

We all see that Ryker, even at his young age, is looking at his Uncle Aaron in a way that shows he is already trying to figure out what makes him tick.  He’s trying to say Aaron’s name and the other night, after Uncle Aaron gave one of his loud claps, Ryker did the same with his sweet pudgy hands.  

We all gave each other knowing smiles.

Ryker will have a front row seat to Aaron’s world and with it will come the invaluable knowledge that special Uncle Aaron is really a very extraordinary gift from God.  

Despite the potholes in our family road, I believe Ryker will be all the richer for having his special…and important…Uncle Aaron in his life.  

And I also believe that Aaron’s heart will continue to grow and grow because of his little nephew that made him Uncle Aaron.

Uncle Aaron: Out of Order

A few weeks ago, Aaron had an incident at his day group.  He got mad at another client there, lost his temper, and ended up being pushed down.  As a result, a nose piece on his glasses got a little bent.  As soon as we could, I took Aaron to our vision center to have his glasses fixed.

Knowing that Aaron greatly enjoys telling everyone all the juicy details of these happenings, I paused to talk to him before we went inside.  I told him that no one needed to know all about how his nose piece got bent.  It’s hard to explain without making him or the other young man or his day group look bad. 

Aaron agreed.

I was not convinced.

As soon as we were seated at the table, Aaron took off his glasses for the technician.  She immediately saw the bent nose piece.  But Aaron could not stop himself from giving at least some form of explanation.

“My place in Wichita went out of order,” he flatly said.

She was confused but made no comment, only smiled.

I was holding in a belly laugh.

And Aaron strikes again with his hilarious and unique way of explaining things, I thought.

It wasn’t until sometime later that it hit me.  Aaron had made the perfect explanation of how he sees his new role as Uncle Aaron.

His place in our family went out of order.

Order is what Aaron craves in his life.  But it must be the order that Aaron mandates.  Anyone who disrupts that order is the object of Aaron’s anger.

Aaron’s nephew, Ryker, has disrupted Aaron’s ordered life.  Aaron’s normal has been upended now that Ryker and Andrea and Kyle live here.  

When the three of them are at our house, Aaron’s mood often becomes confrontational and angry.  He makes comments about how we don’t love him anymore or don’t love him as much as we love Ryker.  Or he gets angry at Kyle for whatever reason.  

Aaron has had us to himself for years.  This sharing business is a monumental adjustment for him.  

Autism is so tricky…so very hard to understand sometimes.  A lot of times.

Or we understand it on paper but when behaviors affect our joy and our emotions then it’s, quite honestly, maddening.

This is how I look at it.  When we see Aaron having a seizure, we understand what is happening.  We feel concern and empathy for Aaron.  We want to help him and be sure that he is cared for and safe.

However, when we see Aaron’s autism at play, it usually involves some sort of behavior from him.  Sometimes he can be funny or uniquely amazing, but there are also plenty of times that he is disruptive, angry, unreasonable…I’ll stop there.  You get the picture.

When he is seizing, we stay with him until the seizure is over.  We would never tell him to stop seizing.  He can’t, of course.

When he is having an autistic episode of anger or frustration, we try to talk to him…to tell him to stop…to get him to listen to reason.  But he usually can’t, any more than he can stop a seizure.

But that fact is hard to grasp in the middle of everyone’s high emotions.  

When special needs affect behaviors, it is very difficult to have the same level of compassion that we have when there is only a physical effect, such as a seizure.  That’s because behaviors affect others around the person so personally.  Our emotions get involved because we are frustrated, hurt, angry ourselves, disappointed, and the list goes on.  

Aaron reacts to his environment very strongly.  His environment has been turned upside down by the addition of his nephew into his life, as well as his sister and brother-in-law. 

All of this makes me think of that old Tina Turner song: “What’s Love Got To Do With It?”

Nothing, to Aaron.  Not when his world is out of order.

It’s not all bad, though.  Aaron has sweet moments, and we relish those.  

A few nights ago, he wanted Ryker to sit on his bed before they left.  He gave Ryker a necklace of his and laughed in delight at how happy that made Ryker.  Then Aaron ran downstairs to tell Kyle he was sorry for being mean to him earlier.  

Yesterday, Aaron walked outside with Andrea and Ryker. 

 

Aaron was more patient with everyone and didn’t attempt to be the only one talking all during our lunch.

“Was I good when Andrea and Kyle were here, Mom?” he asked me last night. 

He’s so childlike at these times and my heart really goes out to him.

Our prayer is that Uncle Aaron will learn to be secure in his place in our family; to develop a relationship with Ryker as well as Kyle; and to know that he is greatly loved.

And to someday know that his world is not out of order but is instead in a very wonderful order!

Skittles and A Super Bowl Ring

Nearly every day that Aaron is at his day group, one of the staff will take him the short distance down the road to the nearby Quik Trip.  This little outing is the highlight of Aaron’s day.  He loves picking out what food and drink he will buy.  

Aaron especially loves Skittles, but his picky mom (ME!) has told him that he does not need to buy Skittles every day…and he definitely does NOT need to spend the majority of his money on the big bag of Skittles.  A small bag of Skittles a couple times a week is OK.

Aaron has made this rule of Mom’s a big deal.  A very big deal.  He has talked it to death with me…teased relentlessly about buying Skittles when he didn’t buy them…told the staff over and over and over again about how “Mom said NOT to by Skittles!!…and I am quite sure, has talked loudly and clearly to the Quik Trip staff about how his Mom said not to buy Skittles.  

During Christmas, Aaron was taken on his regular trip to Quik Trip.  And guess what?  He was given a special gift from the workers there.

You can probably guess what it was.  

A very BIG container of yummy Skittles!!

Just look at Aaron’s face and you won’t need me to tell you how happy he was.

How I laughed when I saw these pictures!

But more than laughter, I was so touched by the kindness of the Quik Trip workers who obviously have gotten a kick out of talkative Aaron’s Skittles stories. 

What a very nice thing for them to do!

Fast forward now to last week.  Aaron and I had run into our nearby Dillon’s, where he hightailed it to the deli counter as soon as we walked in the door.  I finally caught up to him, only to see him bent over rubbing his hands together and talking loudly in great delight.

“MOM!!” he nearly yelled, “they have Cheddar Pasta Salad today!!!”

Aaron’s love of Cheddar Pasta Salad is well known among the deli staff.  Actually, it’s well known among many of the Dillon’s staff in other departments as well because Aaron makes sure that everybody is at the receiving end of his talking.  

So, on this day I agreed to let him buy a Cheddar Pasta Salad…a LARGE!!…of course!

The very nice woman behind the counter has been getting to know me and Aaron.  She is very patient with Aaron no matter how busy she is.  She has experience with autism because of her own young son.

She happily filled the large container to the brim with the salad while Aaron excitedly oversaw her every move, all the while eagerly talking to her about the upcoming super bowl game.  She told us how busy the deli was as they were preparing platters for the game, and then asked if we would like to see one of the deli trays she had just made.

She showed us the pretty tray and pointed out the super bowl ring that was part of the decoration on the side.  

“Hey Aaron,” she said, “would you like a super bowl ring?”

“Yeah!!” he eagerly answered.

She handed him a ring and he put it right on his finger, a smile spread across his face.  

At Meals on Wheels a couple days later, he wore that ring and showed it to everyone on our route.  

There it was on his finger while we ate our burgers later.  

And I was impressed with how the kindnesses shown to Aaron in these two experiences also show the caring hearts in so many people that cross our paths.  Kindness doesn’t have to come in the form of giving Aaron things, either.

Kindness is also shown by a smile.

Or by not staring at Aaron like he is some sort of oddity.

And certainly, by being willing to listen to Aaron if he happily corners you somewhere with talk of his latest game or book or movie or SKITTLES!!

Being kind to our special son is a huge gift to not only Aaron, but to those of us who love him so much as well.

All our special people will thrive under the sunlight of love and kindness that shines down on them from those we encounter every day.

I am very thankful for those that know this and practice it in our lives. 

Pass the Skittles, Aaron!

Do You Know Me?

One evening last week, Aaron had a money gift burning a hole in his pocket.  He knew exactly what he wanted, so off we went to Walmart to look at throw pillows.  He wanted one to rest his book on while reading at night.  Soon we were walking down the main aisle toward the check-out lanes, Aaron happily holding his very soft black pillow.  

Walking toward us was a cashier whose lane we have used several times when we have checked out.   While in her lane, Aaron, as usual, talks and talks to her while she scans our items.  He discusses with her what we have bought..what he likes that we have bought..does she like those too?…what he wanted but Mom wouldn’t let him get…would she want those?…why or why not?…and anything else that he can quickly grab out of thin air before it’s time for us to walk away.

Aaron spied her as she walked toward us.  She gave us a nice smile.  I said hello and smiled in return.  Then Aaron stopped beside her and stared.  She wasn’t quite sure what to do.

“Do you know me?” he asked her.  

“Well, I scan your items sometimes and I remember you,” she replied, relaxing some and smiling at Aaron.

“It’s almost my BIRTHDAY!!” he exclaimed.

She wished him a happy birthday as I took his arm to lead him on and thanked her.

Oh, Aaron.

So unabashedly himself.  

Of course she remembers you, I thought to myself.  LOTS of people remember you.

But then it hit me.  It’s one thing to remember Aaron.  It’s quite another thing to KNOW Aaron.

“Do you know me?” he asked.

Aaron wasn’t diagnosed with autism until he was 14 years old.  We remember many incidents during those years before his diagnosis.  We remember his behaviors and quirks increasing but everyone attributing it to his seizure meds or the effects of the seizures themselves.  It was an extremely stressful time.

His autism diagnosis answered so many questions for us.  Off we set on this journey of understanding autism as it related to Aaron.

More importantly, however, we began to really understand Aaron through the tangled web of autism.  

In other words, we were getting to know Aaron for the complex person that he is.  

To REALLY know him.

It’s fun to know the funny side of Aaron.

We smile at the quirky side of Aaron.

And to enjoy the things that Aaron enjoys.

All those traits, and many more, are easy to roll with and relish.

But…and there’s always a “but,” isn’t there?

But there is an equal part of Aaron that can be very stressful and upsetting.

Sometimes, the upsets are mild, like when he uses multiple utensils for every meal.  Or doesn’t even use all of them but he needs each of them for reasons that are very real to him.  

Or how he can’t have just one CD of a particular artist that he is listening to but must have all of them out of the cabinet at the same time, strewn around the van or hidden under his bed.

How his routine and schedule are so important to him, to the point that he has a very hard time yielding any of it to our schedule, or to understand interruptions.

How hard it is so many times to wait on us when we’re going somewhere.  His impatience turns to anger, which can spread quickly to us.  

And then he carries that anger on some days to his day group, where he takes it out on others and has a no good, very bad day.  Here he is on one such very bad day.

It’s heartbreaking to see his struggles.  

“Do you know me?” I imagine him saying to us or to those who work with him.

Knowing Aaron…really knowing Aaron…takes lots of time and experience.  Lots of hard knocks and long nights and balancing acts.

Many days it’s one step forward and two steps back.

“Do you know me?” he asks again.

Sometimes we answer yes through gritted teeth, through tears, or anger and harsh words.

And then guilt.

Guilt that even though we know Aaron, we don’t always remember how he will react to even the most mundane things…things like a facial expression, a tone of voice, or a hand movement that pushes him over the edge.

But there is another thing we know.  

We know that God designed Aaron to be truly unique.  

God gave Aaron to us to love and to care for.  

And God knows that we need His strength and wisdom every single day.

“Do you know me?” Aaron asks again.

“Yes, Aaron,” we reply.  “We know you, and we will always remember that we love you in all your variety.”

My Choice

Well, I can tell you right now that this blog subject won’t be what some people think it’s going to be.  I just realized how this title sounds as I typed it.  Hmmmm…

Anyway, let me pop some bubbles right at the beginning by sharing this sign that is hanging directly above my quiet time/study desk where I sit nearly every morning, coffee in hand and Bible open.

It reminds me that every day I have a choice to make.  Throughout my day I can choose how I will allow the events of the day to affect me. 

And no single person creates more events in my life than Aaron.

In one sole day you might very well find me laughing, crying, yelling, sighing, worrying, cringing, thanking, guessing….

That’s just the condensed version.

 Last week on our Wal-Mart shopping trip, Aaron took off at a fast trot to go check out the candy and nut aisle.  

“Don’t run!” was all I managed to remind him before he was out of earshot.  

I hurriedly completed my shopping.  I then took off at my own fast trot to see what was occurring on aisle 20.

I rounded the corner to this scene.

Add blushing to the list above.

There sat Aaron cross-legged on the floor as he searched the very bottom shelf for something.  Red Hots, I soon learned.  Beside him he had stashed jelly beans, peanuts, and cashews that he hoped I would buy for him.  Also beside him was a very kind associate named, very appropriately, Joy.  

Joy had found Aaron sitting on the floor.  Being concerned, she walked to Aaron and asked if he needed help.  Boy, was Aaron glad to see her!  Usually when he needs (or just thinks he needs) help, he barges toward an associate and pretty much yells, “HEY!!”  

I’m usually found nearby, or a few steps behind, hissing, “AARON!  Don’t say HEY!!  It’s rude!”

By this time, said associate is typically a mix of alarmed and annoyed which soon is replaced by amused. Maybe more amused by the look on my face rather than by Aaron’s?  Very likely.

Back to the candy aisle.  Joy soon found Red Hots up on the very top shelf, which gave Aaron much joy.

Me too.  Oh, my joy didn’t come from the Red Hots.  My joy came from Aaron being so unabashedly Aaron. Aaron’s going to do what Aaron’s going to do, no matter how many times I correct and redirect and follow him around hissing out instructions that he mostly ignores.  

I thought it was just the most perfect thing that this very sweet associate’s name is Joy.  I do believe that God was smiling.  

And again, I was too.  Others around us were very understanding as they waited or turned around.  Aaron has lots of lessons to teach everyone around him, like it or not.

I posted a little piece about this on Facebook and our neighbor across the street sent me this picture.

Here’s what she said:  “Seeing your Facebook post about Aaron sitting on the floor in Wal-Mart reminded me that I took this the other day.  He was excited to come tell me something.  He really does bring joy.  It’s always fun to hear what he’s going to say!”

Aren’t we very blessed?  Our neighbors all around us are great with Aaron.  

I thanked Gina for being so good to listen to Aaron.  I also reminded her that because of this, Aaron will just keep going over.  HaHa!

Well, we had lots of joy going on and it was really sweet.  I was reminded of this verse:

            “A joyful heart is good medicine…”.  (Proverbs 17:22)

And that’s a very good thing because I know my blood pressure was getting somewhat high on Aisle 20.    

It’s Aaron

After being out of town for several days, Gary and I returned on Monday afternoon.  Aaron was happy, happy to have us home.  But by Tuesday morning he was wishing that we were gone again, and our friends were back at the house watching him.  Re-entry to real life is often difficult for Aaron.  

And he is not the only one who finds it difficult!

Aaron was belligerent on Tuesday when faced with the reality of returning to his day group.  He was very verbal and confrontational.  It’s the side of Aaron that tests my mettle to the core.

It’s hard not to respond in kind to him.  Sometimes I do say more than I want to say, sadly.  As we drove to his day group, I really laid into him.  Not in a damaging or harmful way, but in a truthful way about how his words hurt us and why.  There are concepts that he needs to hear about how to love us even when he is angry.  How to recognize and acknowledge all we do for him instead of thinking only of himself. 

The night before, I had watched a video with him about a triangle UFO.  It’s the last thing I wanted to do.   He had called us repeatedly while we were gone, talking about this UFO video he wanted me to watch with him.

“MOM!!” he exclaimed, “it’s a triangle UFO video that’s 44:42.  Would you watch 44:42?”

Those are the minutes and seconds that he memorizes on each YouTube video that he watches, by the way.

He was ecstatic that I agreed to look it up and then to actually sit through 44:42.

So, on that next morning full of anger, he was full of remorse as I spoke truthfully to him.  As we neared his day group, he spoke softly.

“I’m glad you looked up the triangle UFO video.”

I was quiet.

“I’m glad you looked it up,” he repeated several more times before getting out of the van.

It was Aaron’s way of trying to say he was sorry.

A few hours apart worked wonders for both of us.  He was very happy when I picked him up and I was responsive once more.  I took him to the lab for some bloodwork, where he had to be poked in each arm and he flinched…something he rarely does.  My heart went out to him.  He deals with so much, even more internally in that brain of his than outwardly sometimes.

The technician gave him the plastic tourniquet to keep.  He was delighted.  I watched him walk around WalMart later, both arms with band aids and the tourniquet dangling from his fingers as if it was a prized possession.

I thought of how those small gestures…those items insignificant to us…bring him such joy. 

And it hit me that there are countless times that the seemingly insignificant, daily actions of Aaron bring us such joy…of how much I need to focus on those moments rather than the outbursts that bring hurt.

It’s Aaron at Walmart trying to hide from me because he has BOTH crescent rolls and biscuits in his hand that he wants me to buy.

It’s Aaron sitting on the floor of the store, totally oblivious to anyone around him as he checks out the peanuts on the bottom shelf.

It’s Aaron hardly able to wait until he could show me how much his sunflowers had grown while we were gone.

It’s Aaron helping clean under the kitchen table after supper.

It’s Aaron telling me he took his snacks to the snack drawer before bed.

It’s Aaron thrilled to pieces that I let him buy TWO boxes of Texas Toast.

It’s Aaron loving to do science experiments.

It’s Aaron super excited about his new volcano lamp.

It’s Aaron overjoyed because he won this light-up bouncy ball in Bingo, which he took today to show all our Meals on Wheels clients.  

It’s Aaron sitting alone in the mulch, breaking pieces into a container the same way he has done since he was a little boy.  There goes my heart.

It’s Aaron’s unique sense of style, unaffected by current trends or other’s opinions.

It’s Aaron’s unique impact on my life that I want to treasure and relish each day, even despite the hard times.