Category: Change

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!”

No Water! No Deal!

Wednesday morning seemed just like any other morning until my husband stepped out onto our back patio and discovered water bubbling up into our back yard and between our bricks on the walkway.  Oh boy!

Gary was able to cut the water off at the meter and line up a plumbing company.  They came, did a lot of looking and some digging and some poking and some figuring.  Then we did some questioning and some signing and some down payment paying…only to be told that they couldn’t get to the job until the following Tuesday.  What?!  

That’s a LONG time without water!

So, we did some calling and some discussing and some cancelling and some finding of new plumbers.  

We also did some filling of large water containers that Gary wisely has had on hand for just such emergencies, turning on the water just long enough to get the job done.

The new plumbers came the next day and got right to work.  They worked late, digging and examining in a trench that starts in our back yard, wraps around the side of our house, and ends near the street in our front yard.

There were bumps along the way, like damaging a sewer line that thankfully was an easy repair but meant no flushing all day Friday.  TMI, I know, but I’m just being real.  And it was getting real bad!  

Location services had to come out more than once to correct mistakes they made in locating the cable and other lines.  That’s comforting, right?

The workers were so nice and a pleasure to have around.  They worked very late Friday night and were able to get our water back on!  You can guess the first thing I did.  Actually, it was the first three things I did…flush our three toilets!!  And clean like a mad woman!

The plumbers were coming back on Saturday to hopefully finish the job, but heavy rains during the night and all day Saturday put a stop to that.  Now the trench is full of water and the continuing rains leave us unsure of when the work will be completed.

But we have water!!  And more importantly, Kansas has gotten some MUCH needed rain.  We are not complaining!

As this all progressed, we were concerned about how Aaron would handle it.  Having no water is a huge deal, and huge deals are often a no-deal to Aaron.  He surprised us, though, with how well he did.  He was intrigued with the digging and getting to see the pipes under the ground.  The workers were so kind to him.  They got a kick out of his excitement.  The supervisor even saved the ruptured piece of pipe to show it to Aaron and explain what had happened.  

But by Friday morning Aaron was close to being done with all the no water business.  I knew we were near a boiling point with him when he told me that he was NOT letting me have any of his Halloween candy like he had promised the night before.  

And to finalize his decision, he added:  “I am NOT making a deal with you, MOM!!”

Imagine my surprise when later he walked in the room and laid this on the desk in front of me.  

He chuckled and rubbed his hands together.  

“We don’t need a deal,” he said.  

“You want me to have this?” I asked.

“Yes!” he answered.  “Eat it!” 

He understood when I told him I would wait…that candy first thing in the morning is too much for me.  

All this situation with having no water, though, has made me think about something that has been on my mind a lot since the horrible hurricane damage in the southeast.  I have thought and thought about the impact of such terrible personal destruction on those with special needs.  

How on earth are they surviving?

How are families handling the upheaval and its effects on their special family members whose whole world has been turned upside down, destroyed, and perhaps forever gone?

My friend in western North Carolina talked to me about her daughter who has autism, how she stepped up to the plate at the beginning and was so helpful at home and with neighbors.  But as time went on it was getting harder and harder to handle the constant pressure and stress of routines being completely disrupted and of doing things not normal for her.  Then come meltdowns and anger, which are terribly difficult for the family already dealing with more difficulties than imaginable.  

I have wondered what Aaron would be like in a situation like this, where everything he knows and expects and demands is gone.  I can’t even fathom it.  A couple days without water and he was approaching the done point.  Imagine everything being gone for weeks and weeks, forever even, and what that would do to him.

Imagine the untold number of families in these areas whose special children or other family members are enduring just that, a million times worse than our small inconvenience.  

So many special needs individuals with so many needs that are special to them.  Needs they can’t control but that must be met as much as possible.  

How they need our prayers!  

Let’s not forget them.  

Automatic Uncle Aaron

I’m sitting here staring at this blank screen, wondering how I can convey Aaron’s adjustment or lack thereof to being Uncle Aaron.  I think the best way to do so is to share with you a statement he made not long ago.  Here is Uncle Aaron in true Aaron form, talking about his role as an uncle.

“Well, Andrea made me the uncle without asking.  Why did she automatically make me the uncle?!”

Shame on Andrea, right?  

Oh, Aaron.

I made a feeble attempt to explain this dynamic of becoming an uncle, but Uncle Aaron was already on to another topic, and I knew when it was time to just hush.

As I have said many times in the past and am sure I will continue to say many times in the future, Aaron’s main concern in life is Aaron.  His schedule, his routine, his comfort, his attention…these are a few of the things that matter most to him.  When the title “Uncle” is added to his name, that means there is another person in his world that made him an uncle…and that little person sometimes takes Aaron’s schedule, routine, comfort, and attention, and stands all of it on its head.  

Aaron’s world is jumbled during those times.  He is not the center of attention, the master of his world, the keeper of his schedule…and this disruption is HUGE to him.

You should hear him at the dinner table when Andrea, Kyle, and Ryker are at our house.  He literally will not quit talking, and when he is interrupted by us giving Ryker attention, he is perturbed.  Or when Aaron takes a bite and we can use those two seconds when he is not talking to jump in and quickly start another vein of conversation, Aaron huffs and puffs and chews extra fast so he can quickly start talking again.  

He cannot figure out why on earth we would interrupt his monologue about the core of the earth, the solar eclipse, the ancient cave bones that were unearthed, what causes earthquakes…and by the way, why didn’t the moon melt during the recent eclipse??

BUT…Aaron, despite all these interruptions into his ordered life, is surprising us with his efforts to assimilate Ryker into his life and to try to understand his new little nephew.

Ryker just stares at Aaron, waiting for eye contact and for a response.  He doesn’t get that from Aaron yet, of course.  Aaron has yet to talk to Ryker.  That concept is just too hard for Aaron.  So, Ryker observes his Uncle Aaron with great curiosity, even at only 15 months of age. 

What Aaron does love to do is to give Ryker things.  Here he is sharing his pecans with Ryker.

He was super excited for our sweet little neighbor to share her chalk with Ryker.

And for the first time in years, Aaron wanted to have an Easter basket and an egg hunt like Ryker.  A little jealousy there, I’m sure, but it was fun and had some sweet moments.

The good times and the progress we see is very encouraging to us.

They truly are more frequent than the other side that crops up when Aaron is feeling usurped and not loved as much as Ryker.

After all, Aaron may have automatically been made an uncle but knowing how to really BE an uncle is not automatic for Uncle Aaron at all!

We have certainly learned that fact over this past year.

And we have also learned to be thankful for every single bright spot that we see along this growing Uncle Aaron journey.

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!

Up and Down With Uncle Aaron

Many of you have been wondering how Uncle Aaron is faring with his little nephew, Ryker.  Well, since a picture is worth a thousand words, let me share our family Christmas picture that our sweet neighbor was kind enough to take for us in the middle of some cold temperatures.

You can clearly see the struggle on Aaron’s face.  And also the love that his sister, Andrea, has for him as she helped him tolerate standing there long enough for some pictures by holding his hand.

It wasn’t just the cold that was bothering Aaron.  Not even the promise of eating dinner out right after this was enough to make Aaron smile.

Reality was setting in for Aaron.  Andrea worded it perfectly last night as we talked after Aaron had left the room.

“Ryker has infiltrated Aaron’s life,” she wisely said.  

I can illustrate Aaron’s way of viewing his life by what happened as he and I were getting his blankets on his bed a couple nights ago.  He got two new blankets for Christmas.  Since it’s been so cold, he wants to put both new blankets on his bed along with the three he already uses…for a grand total of five blankets!

I have written before about the order of his covers.  Nothing has changed.  He has decided that on top of his already well-ordered blankets, he wants the Christmas blanket first and the grey blanket on top.  I made the dastardly mistake of reversing that order.  I went ahead with things, wondering if Aaron would mind.  He did.

“Mom, I want the Christmas blanket first!” he said.

“It doesn’t really matter, Aaron,” I naively answered.

“But I want them the way I like them!” he declared.

He was already removing the offending grey blanket as he spoke.  Knowing better than to fight his need for this certain order, I complied while keeping silent.  

Pick your battles, right?

Aaron’s initial reaction to Ryker was precious.  He gave Ryker his special bear, as I wrote about earlier.

Within three days, Aaron had taken back the bear.

Up and down.

After friends graciously took him out to dinner on our Christmas Eve, and then he survived our Christmas day, he was much improved.  After some encouragement from me, he gave the bear back to Ryker.

But the realities of autism rule Aaron’s mind and his relationships. 

Again, look at another picture.  This is Aaron’s place at our dinner table one recent night.  He set the table, and his setting is exactly as he wants…and needs…it to be.  Fighting it is useless and unproductive.

Watching Aaron in every area of his life is exactly as described years ago by M.P. Everard:  “…one is instantly aware of how different they are and the enormous effort they have to make to live in a world where no concessions are made and where they are expected to conform.”

The reality of a baby in our lives, even his precious nephew, is not precious to Aaron.  He sees the laughter and the joy that Ryker brings.  Aaron is not the center of attention.  His egocentric tendencies rebel against this fact.

Conforming to our desire for Aaron to love and accept Ryker is a huge mountain for Aaron to climb.  

When Ryker is with us during a meal, Aaron literally spends the entire time talking about things like the core of the earth, whatever video he is watching, aliens, etc., etc.

Andrea is so good to try to focus on Aaron, but we all know that Aaron also needs to understand and to share that focus with Ryker.

Ryker, the offending nephew.  

The infiltration of the nephew is not acceptable to Aaron.  

“I want life the way I like it!!” Aaron is inwardly…and sometimes outwardly…saying.  

I wish he was only referring to blankets and silverware.  But Aaron is also wanting his immediate family to focus on him when we are all together.  Ryker is not cooperating with that demand from Aaron just by nature of being a baby.

Today I spent lots of much needed time with Aaron.  We went to Wal-Mart, picked up Taco Bell for lunch, watched two episodes of All Creatures Great and Small, and played Yahtzee.  

While shopping, Aaron picked out a cute little yellow stuffed bee that he wants to give Ryker.  I talked to him about how the best thing he can give Ryker is his love and kindness.  I believe, from Aaron’s responses, that he really does want to do that, but his desires are overtaken by how his brain is wired.  He reacts spontaneously to his environment, no matter who he offends.  

So, we keep plugging away as we try to understand with patience the huge task in front of Aaron.  And trust me, sometimes our patience wears very thin.

Our prayer is that Aaron will learn to love sharing his love with Ryker as much as he loves sharing stuffed animals.   

Through the ups and downs of this new journey, I do not want to forget all the goodness of God that He has shown us.  The answers to our prayers have been amazing.  

May I not lose sight of the fact that even when I feel like Aaron’s heart is out of our reach, his heart is never out of God’s reach.  

Thank you to each of you who are caring and are praying.   

Act Happy, Mom!

Over the years of blogging about our life with Aaron, I have sought to inform and educate others about the complexities of autism.  There are so many parts and pieces to autism…so many ways that Aaron’s life, and therefore ours, is affected by how autism makes him function.

Oh, if you only knew how many times I have thought or even asked this question of Aaron:   “Can’t you just…….?”  

Fill in the blank.

I have even had that question asked of me concerning Aaron.

“Can’t you do something with Aaron?!”

Or this one:  “Have you thought about….?”

Or:  “Have you tried….?”

Now, I do not mind helpful advice or constructive criticism.  However, one must be careful to truly understand a condition before offering advice on handling that condition.

Even Gary and I, with our years of experience, can at times find ourselves floundering amid Aaron’s stubbornness about certain situations.  

Aaron is very wrapped up in his own comfort and routine, sometimes to the detriment of everyone around him.  Anger on his part can set in quickly when his perceived needs are not being met in the way that he wants them to be met.  

It’s narcissism at its finest…or not…but is born out of Aaron’s deep-seated requirements of life, not out of pure selfishness.  Some incidents seem incredibly selfish, though, and there are times to handle that situation.

Such was the case one evening not long ago.  I was preparing a meal for supper when Aaron came into the kitchen and asked what we were having.  The meal wasn’t one of his known favorites.  And he let it be known right away that he was having none of it.

I did not budge when he asked if he could have something else to eat.  I reminded him that I do not run a restaurant and that he could eat what we were eating.  I told him I knew he would like it if he just gave it a try.

He was most unhappy!  

After several trips into the kitchen, where he angrily informed me that he hated that food and would NOT eat it, I knew that nothing I said was going to turn him around.  In fact, any words from my mouth just added fuel to the flame.

This is when I have learned to shut down and no longer respond to anything Aaron says.  I do not talk to him or respond to him.

And he detests that.  It makes him very uncomfortable when Mom doesn’t talk to him, but the silence is the best way I have found to defuse him and to show him that I am done with this scene.

As supper was nearly ready, he began to follow me around, talking a lot and hoping for a response from me.  Finally, he asked a question that needed an answer, so I responded in a very flat voice.  Aaron knows that this voice of Mom’s is still an indication that he has crossed the line. 

“Mom!” he urgently said, “you should answer like you’re happy that I’m telling you!!”

I had to smile at that one and was glad that my back was to him.

But you see, Aaron is clueless about how his treatment of us affects us.  It’s good for him to see the effect in a tangible way, as in my silence and lack of enthusiasm.

He did eat a little dinner with us, and we were able to talk to him some about his attitude.

Then later, Gary and I slipped out to the porch for a little time together.  We both needed a breather.

But we weren’t stealthy enough, for Aaron heard us and soon darted out the door and made himself right at home with us.  There he sat, seemingly oblivious to what had happened earlier, all primed and ready for a long talk with his captive audience.

Of course, he didn’t talk about his earlier behaviors.  He didn’t talk about his feelings, and he most definitely did NOT talk about our feelings.

Aaron wanted to fill our ears with his latest discoveries from reading his book on UFOs.  He wanted to talk and talk and talk about Area 51, asking tons of questions and waiting for our answers.  

Ah, Aaron…slipping into his comfort zone and unaware of the fact that this is not our comfort zone at all.  

Such is the give and take of living with autism.  My silence had pushed Aaron out of his comfortable place.  Now his talk of aliens and UFOs and Area 51 showed us that Aaron was ready to get back to normal…his normal, that is.

And yet his normal has in a strange way become our normal, too.  We know that Aaron is happy again when his conversation turns in these strange ways.

I guess Gary and I have become a little strange ourselves sometimes.  

And strangely enough, we didn’t have to act happy.  

We truly were just as happy as little aliens in a UFO!

Our Precious Gift Has Arrived

Early this past Wednesday morning our most precious Christmas gift was delivered, all wrapped and perfect in every way.

I’ll let him give his own announcement.

Ryker!  A name meaning “strong one” and also “rich.”  We pray that he will always be strong in the Lord and full of the rich blessings of God in his life.

Mommy and Ryker are both doing well.  They all came home from the hospital yesterday.  Our travel plans are still uncertain, but it goes without saying that we are very ready to meet and to hold our little grandson.

And now for Uncle Aaron.

Aaron knew that Andrea was in the hospital.  He knew when he went to bed on Tuesday night that the baby had still not arrived.  And he was not wanting to hear constant talk of the progress toward his nephew’s birth.

On Wednesday morning, I gave Aaron some time before I told him that his nephew was here.  Finally, I showed him this picture taken shortly after Ryker was born.

Aaron leaned toward the phone as I carefully watched his face.  He stared at the picture and then his face softened.  He had a little slight smile that flickered as he took in this first sight of his nephew.  Then he spoke.

“Ugly,” Aaron said.

Of course, I reprimanded Aaron gently and reminded him that this is his nephew.  His name is Ryker, I told Aaron, and he is a beautiful little baby.

Some would be shocked and offended by Aaron’s comment.  But Aaron was just using the only word he could summon to show that he is needing to adjust to this huge change in his life.  A change that he did not ask for and that he would rather not deal with. 

Aaron knows that this little baby will change everything in his world.  We all know that change is not welcome in Aaron’s set world.  No matter that this is a precious baby that is bringing the change.  To Aaron, it’s the change that is making him nervous and whatever is bringing that change is what Aaron will focus on and hope to ignore.

Like our friend Barb said, “Aaron’s world has changed even with his competition so far away.”

As that first morning continued, we tried to keep baby talk in front of Aaron at a minimum. 

“I don’t want to talk about the nephew,” he said.

At least Aaron was communicating his feelings, right?

Finally, Aaron referred to “the nephew” as Ryker.  Yay!!!

That night, as we prayed before bed, I thanked God for our little Ryker.

“So, I need to love Ryker?” Aaron asked after we prayed.

I knew that Aaron, in his factual way, was working out his feelings and his responsibilities toward this little family interloper…this change agent.  😊

Imagine my shocked delight yesterday, then, as Aaron and I visited two different friends.  This is what happened at each house.

“The baby came!  Mom, show them the picture of Ryker!  I LOVE Ryker!!”

I had a hard time pulling up the pictures because I was trying to lift my jaw off the floor.

It was so spontaneous and sweet. 

Aaron continued his excited recitation about Ryker, which also included some of his concerns about being The Uncle. 

But this is what Aaron needs to do.  He works out his discomfort and concerns with lots of talking, with many questions that we hear over and over, and repetitions of the same answers that he hears from every person who is willing to listen to him and respond.

Free therapy!

Thank you all for that!!  😊

And we thank you so much for all of your prayers, both for Ryker and his birth, and for Aaron and his adjustment.

We’re far from done with that Aaron part.

But we are very thankful for our precious Christmas gift. 

The Normal Road

As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel.  We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident.  I told Aaron that I would need to go another way home after I dropped him off.  This concerned him but I assured him that it was no big deal.

All was clear on the highway and the exits when I picked Aaron up later that afternoon.

“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”

It took me a second, but then I understood what he meant.  He was very happy as I turned into our exit that we could go up the road that we are normal with.

Aaron was completely unaware that he had just perfectly described his life with autism.  And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.

Aaron wants to stay on the road that he is normal with.  Any variation of that road will most certainly be full of potholes and unexpected detours. 

The road that Aaron is normal with is only at home.  It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.

His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us.  He takes more books than he will read in three years.  More music than he will listen to in the week that we are gone.  Way more food than he will eat and way more games than he will play.

And he takes way more out of all of us than we feel that we can give.

Patience and understanding are our goal on every trip, but they are often stretched very thin.  If only my scales would show how thinly I am stretched!  😊

One evening we were setting the table for supper at our daughter’s house.  I gave Aaron one fork just like all of us were using.  But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.

Always, always, Aaron will take two forks and two spoons and two knives.  He doesn’t use them but what we need to understand is that for some reason he does NEED them. 

Again, here is a perfect description of living with autism – this time in picture form.

You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware. 

Aaron needs more.  He can’t even tell you why he does but he indeed must have more.

He must have more than the rest of us in so many areas of his life.  Sometimes it’s hard to remember that.  It’s hard to be patient with him and understanding of a need that we don’t have.  A need that seems so unreasonable. 

But the complexities of autism are not to be trifled with. 

There are many ways that we as parents can guide and train Aaron, and we have.

But we must be wise in choosing our battles.  Some battles we will always lose, and such a loss is not worth it.

The road that Aaron is normal with is also a road that Gary and I travel right alongside him.

I guess you could say that over the years we have a new normal…one we could never have dreamed of having.

Some days the trip is long, and we feel near empty.

Then we see a view like this, and our hearts are full again.

A Donut With a Side of Autism

Yesterday our friend, Karlea, tagged me in a FB post from our nearby donut shop.  Paradise Donuts was reminding all their customers that it was National Donut Day, and that they were giving everyone a FREE donut.  Karlea just knew that Aaron would love stopping in for a donut.  Soon I was explaining National Donut Day to Aaron, asking him if he wanted to stop on our way to his day group for a donut.  YAY!!

NOT yay.

I must backtrack a bit to explain.  Nearly every day at Paradigm (Aaron’s day group), Antoine or another staff will take Aaron to the nearby QuikTrip.  I send money with Aaron, and he is able to buy something to eat and drink.  He absolutely loves this small outing.  His QuikTrip visit is ingrained into his routine now.

Back to yesterday.

Me:  Aaron, today is National Donut Day.  Paradise Donuts is giving away a free donut to everyone that comes in.  Would you like to stop there on our way to Paradigm?  We can get a free donut!

Aaron:  No.

Me:  What?  You don’t want a donut?  A FREE donut?!

Aaron (a little more emphatically):  No!

Me:  Why don’t you want a donut?

Aaron:  I want to go to QuikTrip.

Me:  I’m still sending money and you can still go to QuikTrip.

Aaron:  I like Antoine taking me to QuikTrip for food.

Me:  Antoine will still take you to QuikTrip for food. 

Aaron:  I like QuikTrip food, NOT a donut!

Me:  But you like donuts.  Just a few days ago you were happy that we stopped to get donuts.

Aaron:  I like Antoine taking me to QuikTrip more than you taking me for a donut!

These conversations usually lead to personal insults as Aaron attempts to drive home the fact that on Paradigm days…almost always…QuikTrip is what he does and where he goes for food and fun. 

Nothing will deter him from his routine. 

Not even a donut.

Not with Mom.

I dropped it like a hot donut and took Aaron to Paradigm.

Later, when I picked Aaron up, he told me about his day.

Aaron:  Mom, they had donuts at Paradigm for donut day.

Me:  Oh, that’s fun!  Did you eat one?

Aaron:  No.

Me:  You didn’t eat a donut?!

Aaron:  No.

Me:  Why not?!

Aaron:  I didn’t want one.  I wanted to go to QuikTrip.

I decided to just drop it.  Aaron didn’t see me shaking my head.

After a few moments of silence:

Aaron:  Antoine took me to QuikTrip!

Me:  Good!  What did you buy today?

Aaron:  I bought two donuts.

There are not enough letter combinations in the English alphabet for me to form enough words to voice what I was thinking and feeling and wanting to say at that moment.

Just as well.

Laughter is far better than lectures during these times.

BUT I WANT A DONUT!!!!!

Don’t Try to Change Me!

The word “change” is not a welcome word to many who deal with the issues of autism. 

You can phrase that concept any way you want.

“Come on, just roll with the flow.”

“Be flexible!”

“Try it.  You’ll like it!”

I have told you how Aaron won’t eat his popcorn at the theater until the actual movie begins.  The commercials before the movie are NOT the movie.  Neither are the sometimes endless trailers that are then shown.  Trailers are NOT the movie!  Aaron will continually look down at his big tub of popcorn that he has placed on the floor beside his feet, waiting expectantly to dig in when finally THE movie begins.  Then he will pick up his popcorn and visibly relax as he begins to eat. 

Aaron does the same thing at home.  When we sit down to watch a show, he will lay his snack close to him, but he will not begin to eat it until the show actually begins.  He will sit through opening credits.  He will sit through a long intro such as Blue Bloods has.  You’re not going to fool Aaron.  He knows that these programs are tricky and that they have opening music that hasn’t played yet, so don’t EVEN try to get him to eat until all the preliminaries are over and done.  Ice cream may even start melting, but Aaron doesn’t care. 

Aaron has carried this “waiting for the actual event to start” idea over to his music that he listens to in the van.  This past Thursday we started on our way to pick up our food delivery for Meals on Wheels.  We had been listening to Brad Paisley.  I pushed the button to start the music.

Aaron pushed the button off.

I pushed the button back on.

“MOM!  I don’t want to listen to music right now!”

“I know you don’t, but I do,” I replied.

He pushed the button off.

I pushed the button back on.

“MOM!!” he protested, “I said I don’t want to listen to music!”

“It’s not just about you, Aaron,” I responded with more patience than I felt.  “I do want to listen to music.”

Aaron was still and quiet for a few seconds.  Then off went the button again. 

I sighed a very deep sigh.  My lungs are in such great shape, living with Aaron.

“Aaron,” I began, “you want to wait until we actually start delivering our meals before you turn on the music, right?”

“Yes,” he replied.

“But we can listen to music now.  It won’t hurt anything to do that,” I told him.

I pushed the button back on.

I could feel the pressure building in Aaron, just like my pressure cooker at home.

He pushed the button off.

“Mom,” he began, “uh…you know…uh…”

And thus began Aaron’s attempts to start a conversation under the guise of wanting to talk instead of listening to music.  I just decided to let it go.  Hey, that’s a song!  It should be my theme song!

Bless Aaron.  I know he can’t help it, but really…!

Later that afternoon, Aaron was very happy that Gary was going with us to Nellie’s Pond for a walk.  But there was that issue of Aaron wanting to sit in the front seat of the van because that’s where Aaron sits when I drive and he and I are usually in the van by ourselves so the front seat is his and that’s the way he likes it and that’s the way it should always be…..

“Mom!” he began as he was processing his plan, “I know.  Dad can ride in his truck and you and I can take the van!”

“No, no Aaron,” I said with a laugh, “that’s not the way it’s going to be.”

But Gary, in order to give Aaron a perfectly happy experience, sat in the back seat while I drove, and Aaron sat in his front seat.

Just the way it should be, in Aaron’s world.

And sometimes we do put ourselves into his world…actually, lots of times…so that he can relax and have total fun.

Walking through life with Aaron…balancing discipline with the rigidity of autism…is certainly an exercise in patience and wisdom. 

Gary and I do not possess either of those qualities in the abundance that is usually needed but I am so thankful that God gives and also forgives.

So often, too, I find that it is me who needs to do the most changing.  God knows that all too well!

I wonder how often I am the Aaron in God’s life.   😊