Magical and Maddening

“Aaron, look!!” I exclaimed one recent night as I closed our family room blinds.  Aaron walked over to join me at the window.  There, emerging from the grass in our front yard, were dozens of fireflies.  Lightning bugs, we called them where I grew up in West Virginia.

Aaron thought they were very cool!  He insisted that Gary come to the window as well, and so we stood there together for a minute, enjoying the sparkling little bugs.

A few nights later, Gary and I sat on our front porch after the stifling heat of the day had subsided somewhat.  It’s nice for us to enjoy a few moments of quietness and of being together, just the two of us without Aaron’s loud interruptions.  As dusk fell and darkness was encroaching, up from the grass once again came those beautiful fireflies.

It was captivating watching their glow, so many of them combining into a magical light show right in front of us.  So peaceful.

Then…BAM!!

Out on the porch rushed Aaron, who is rarely quiet.  There went the peacefulness of our front porch evening!

“MOM!!  Are we watching a Little House tonight?” he asked, knowing the answer.

I assured him that we would watch an episode, as always.

But, as always, that wasn’t enough for Aaron.

“When?” he asked.  “Can we do it now?”

I knew what was ahead but wanting to remain in the magic of firefly glow I told Aaron that I would let him know when I was ready.  This answer never suits Aaron.

One of the very hardest things for Aaron to do is to wait…on anything.  He especially finds it nearly impossible to wait on me to watch a program with him when HE is ready.  He escalates quickly into anger at those times, no matter what I say or how well I prepare him for the inevitable wait.  That night was no exception.

Our evening was quickly reverting from magical to maddening.

Such is often the life of a caregiver.

My blogging friend, Cheryl, is the author of a caregiving blog written out of her experiences as she cares for her husband who has Parkinson’s.  Our situations are very different but also very similar.  I have loved her insights and her godly wisdom.

In one recent blog…linked here… (https://parkinsonscaregivernet.wordpress.com/2020/06/13/similar-yet-different-but-really-similar/) – she wrote:

“But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.”

The difficult moments with Aaron often involve his autistic behaviors…his demands that life revolves around HIS order and expectations of how things are to be.  During those times, no one else’s desires or needs are considered by Aaron to have importance.

Maddening.

On our firefly night, we told Aaron that he needed to wait.  We tried to get him to  enjoy the magical lights in our front yard but he was blinded by his own frustrations and cared nothing for the beauty around him.  Only one thing mattered.  And he wanted that one thing NOW.

Anger intruded into our evening and stood on our front porch, as opposite in its effect as could possibly be when compared to the earlier joy of time together with Gary among the little sparkles in our yard.

Later, the anger was gone as Aaron and I watched our show.  Aaron is usually oblivious to the effect he has on us during those times as he brushes off the recent outburst and is happy in his bubble again, where all is well.

Oh, that it was so easy for me to do the same!

Like Cheryl said, though, it’s important to hold the moments of joy sacred in our hearts and in our memories.  And to know that we, as caregivers, are doing God’s work here on earth.

My heart this morning was heavy as I helped Aaron during his second seizure…knew that I would have bedding to wash later…canceled my hair appointment…and tried to still my worried heart about other matters.

I had finished my normal Bible study and so I opened my Bible randomly to see where my eyes fell.  I love doing that!  It’s like opening a treasure box that I just unearthed, excited to see what’s inside!

And look what God gave me!!

“But ask the beasts, and they will teach you; the birds of the heavens, and they will tell you; or the bushes of the earth, and they will teach you; and the fish of the sea will declare to you.  Who among all these does not know that the hand of the Lord has done this?  In His hand is the life of every living thing and the breath of all mankind.”  (Job 12:7-10)

It’s all in God’s hands!

Aaron…me…Gary…others I love…our world…

All life and breath is in God’s hand.  All of creation declares that truth!

Now it’s up to me to trust our loving God and to rest in His hand.  And to…most importantly…trust Aaron into His hand and know that God put Aaron into our lives for a purpose I may never know on this earth.

But may I trust God’s knowing.  Trust and know just as much as the beasts and the birds and the bushes trust and know Who has done all this!!

Fireflies know, too, I am sure.

Maybe that’s why they shine their magical lights for all to see!

May I do likewise.

Photo by National Wildlife Photo Contest entrant Radim Schreiber.

 

To Ignore Aaron

Anyone who has been exposed to Aaron will no doubt agree on this:  Aaron is very hard to ignore!

Aaron is going to do what Aaron is going to do.  He is mostly unaware and uncaring of the reactions he generates from others.

Whether he is sitting in our front yard relaxing as he breaks apart the mulch:

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Or dressing in this hilarious “fashion” for all to see:

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Or deciding to pet Moe, our neighbor’s cat, on Moe’s level:

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There is generally no stopping Aaron from forging ahead with his version of living life to the fullest!

Aaron struggles with waiting on me to do an activity with him.  I often don’t tell him that we’re going somewhere, for instance, until shortly before we leave.  If I tell him that we’re going out, then he hovers and gets very impatient with me.  Best to just dash out the door quickly than to endure the anger that his impatience causes.

But some activities are set in stone, for the most part, and Aaron will begin his hovering when HE is ready for whatever that event is.  Every night we watch a program together.  Most often it’s a series that we are going through.  Right now we’re watching Little House on The Prairie.  Nearly every night Aaron will begin his impatient waiting for me to be ready to watch our next episode.  He will stand outside my bedroom or bathroom door, talking and questioning and getting angry if I don’t hurry.  One recent evening, I told him to NOT wait outside my door.  I was pleased that he obeyed, and I could get ready in peace and quiet.

But when I rounded the corner to go downstairs, here is what I saw:

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Oh Aaron!!  😊  😊

“I’m waiting on you to get ready!!!” he informed me.

And once again, Aaron was impossible to ignore.

When Aaron has crossed the line with his behaviors, though, one way to get my point across to him about his disobedience is to ignore him.  I become quiet and I barely answer his questions, if at all.  It’s hard for me to do that but I have learned that being ignored by me speaks more profoundly to Aaron than all the words in the world that I could use.  He knows he has really done wrong and that he must make it right.

Last week Aaron and I were in a store.  We were checking ourselves out when I ran into a problem and needed help.  When the attendant stepped around the corner to help me, I saw that it was someone I have come to know there.  Aaron knows her, as well.  This person has a hard life, and sometimes she is very down.  She doesn’t hide it, and when she approached me, I knew that she was having a bad day.  She didn’t engage me at all when I spoke to her.  I can handle that – no problem.

But Aaron doesn’t get those cues from people that you and I see.  He noticed that her hair was different and so when she walked away from me, he followed her.  When she stopped a short distance away, with Aaron at her back, he rubbed his hands together as he happily spoke to her.

“Your hair is short!!” he declared.

No response from her as she kept her back to Aaron.

“Your hair is short!!” he tried again.

Still no response.

I called Aaron back to me, telling him that she was busy, and he didn’t need to bother her today.  I knew he was confused, though, because typically she engages him with interest and kindness.

As for me…I was so angry.  For someone to dismiss and ignore Aaron has always been a very hard thing for me to handle.

I stayed pretty riled up about it for the rest of that day.  I talked to my husband and to my daughter about it later.  I stewed and brewed for quite some time.

But God, as He always does if I but listen, told me that I should not only pray about my reaction but that I should definitely pray for this sad person.

And that I should remember a verse from Psalm 37 that I had recently studied:

Cease from anger and forsake wrath; do not fret; it only leads to evildoing.”  (Psalm 37:8)

Do you know what the word “fret” means?  It means “to get burned up.”

And that’s exactly how I felt!  It burned me up to see Aaron being so blatantly ignored!

Yet what I needed to carry away from this situation wasn’t my load of anger, or my justification for it.  I needed to release my feelings to God and just put a stop to my desire to get even…to report her…to make a point.

Getting steamed about our hurts often leads to evildoing, as that verse says.  We certainly are seeing that in our country today!

How much better it is to talk to God about it, and to follow the example of Jesus…who, though reviled, did not strike back.

It’s a choice I am allowed by God to make.

Do I choose peace?  Or do I choose conflict?

It’s best to follow Aaron’s example, too.  He does bounce back quickly from his anger and hurt, most of the time, settling in to the next thing that captures his attention.

So, like Aaron, I’ll find and choose the joy…in whatever shape it takes.

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Where There’s A Will…

Autism 101:  Individuals with autism tend to “…have eccentric preoccupations or odd, intense fixations…  They tend to follow their own inclinations regardless of external demands…” (Karen Williams)

You got that one right, Karen!

In our home, living with Aaron means that Gary and I also live with his fixations.  Sometimes his obsessions are funny.  Sometimes they are maddening.  Sometimes they are exhausting.

But always, Aaron will…to finish the above title…find a way to fulfill his inner demands of how his life is to be lived.

Like his mealtime routine.  Aaron will always, always, always, have multiple utensils or plates or bowls of whatever kind he desires for each meal.  Here was his place setting recently as he ate lunch in the family room.

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We have come to expect this, and we don’t even try to correct him. He will make sure to have the proper number of knives, forks, or spoons for every meal.  I am just very thankful that I have a dishwasher!

How about movie credits?  Gary and I watched a movie yesterday.  Afterwards, we wondered where the movie was filmed.  We watched the credits to find our answer, which happened to be at the very bottom of the huge stream of names and job titles.  And we laughed at ourselves, realizing we had become…for that moment…just like Aaron.

Aaron…who watches movie credits with as much focus as he watches the movie.

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Aaron loves his Star Light that he turns on every night.  It was a Christmas gift from Kyle and Andrea, and he has turned it on every night since then.   Aaron very quickly developed his own rules for his Star Light.  He wants it turned on just as he is getting into bed.

One night, Gary came upstairs shortly before Aaron was actually getting INTO his bed.  Aaron wanted Gary to see his Star Light, so while Gary stood in the doorway, Aaron turned the light on.  Gary oohed and aahed, Aaron was very happy, and then off went the light.  Maybe two minutes later…tops…Aaron turned the light back on because he was now getting INTO bed and it was the REAL time to turn on his Star Light.

Back to Karen Williams’ quote:  Aaron will follow his own inclinations regardless of external demands.

Gary and I are usually the ones making those external demands in many cases.

Let’s talk sweaters…Aaron’s sweaters, to be precise.  Of course.

Aaron LOVES his sweaters.  Certain sweaters are better than others, and he will wear them until they are worn to bits.  He had this old sweater for several years, but it was his very favorite.  He wore it or carried it or had it nearby, inside and outside…always.

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This year, for Christmas, I ordered him two new sweaters.  They are long and flowing, the kind he loves.  And love them he does!

He wears one pretty constantly.  Inside and outside, his sweater is being worn.

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He also wants to wear it to bed, under all his necessary covers…including his new weighted blanket that he loves.  This means that sometimes he gets too hot, but he will rarely agree to sleep without his sweater.  This happened on Saturday night when he talked about being too hot the night before.

Enter the external demands, made by me.  I reminded him that he should remove his sweater before climbing into bed.  He was reluctant, but finally agreed to those external forces trying to rearrange his internal inclinations.

We discussed it on his monitor when I went into my bedroom.  We discussed it as he stood at my closed bathroom door while I tried to brush my teeth.  And he continued to discuss it with Gary after he clomped down two sets of stairs to Gary’s study.

We thought we had won.  We were the new KING AND QUEEN OF EXTERNAL DEMANDS!!!!

Silly us.

Soon Gary came upstairs.  Aaron called out to him from behind his closed bedroom door, wanting one last word with Dad.

And last word it was…for there lay Aaron.

Wearing his sweater.

On TOP of the covers.

We removed our King and Queen crowns as we climbed into our own bed.

Instead, we wore smiles.

Why fight the inevitable, right?

Aaron will always find a way.

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Caught Up In Crazy

I very innocently planned a grocery trip today to Aldi.  I often go to Aldi on Friday mornings.  Not a big deal…so I thought.

Also, not a big deal to take Aaron with me…so I thought.

I wasn’t surprised that the parking lot was rather full.  I WAS surprised when Aaron and I headed for the carts to hear a woman call out to me, telling me that Aldi wasn’t opening until 12:00.  Somehow, I missed that memo.

Thankfully, Aaron and I only had to sit in the van for less than 10 minutes.  Out we hopped, again, grabbed our cart and had to walk to the back of a long line.  Never…not Thanksgiving…not Christmas…not pre-blizzard…have I seen a line waiting to get into Aldi.

The lady behind me mentioned that this was crazy.  Yes, it was crazy.  So was the line all the way up the first aisle headed for the produce, and the line waiting for eggs, and another for dairy products.  All through the store, in nearly every aisle, we were bumper to bumper carts and shoppers.

So much for social distancing.

I saw some things.

I saw concerned faces.

I saw tired children.

I saw long lists in shopper’s hands.

I saw smiles, too.

I saw kindness from many of the harried people there.

I saw a very elderly and frail woman with beautiful white hair sitting on the counter where her caregiver packed their groceries…and she was sound asleep, her head bowed, seemingly oblivious to the noise around her.

And I saw Aaron as we stood in the check-out line, his arms hanging down and his hands folded together while he stared down at the end cap display beside us.

He was somber and quiet, very uncharacteristic of him when shopping.  Usually he rubs his hands together happily as he stands in line talking about a game or a movie or what he wants to eat for supper or any number of other things.  Usually I must remind him to talk softly.

But not today.

Today, Aaron saw and felt the crazy all around him.  I was calm all through the store, talking to him and to others, trying to maintain a sense of normal.

That’s because I know how necessary normal is to Aaron.

But today was anything BUT normal, and Aaron was not to be fooled.

I’ve written about how Aaron is very tired of this Coronavirus…how done he is with store closings and restaurant closings and crowds and shortages.

I really didn’t expect Aldi to be part of the crazy today.  I didn’t expect our trip there to add to Aaron’s angst.

Yet there we were, sucked into the crazy while not wanting to contribute to it.  I was just there to get normal groceries.  But the crowds…the lines…the empty shelves…the waiting…the jostling – all made Aaron most unsettled.

“Mom,” he said.  “You’re just here because of the crazy Coronavirus!”

I tried to assure him that I was there because of needing normal groceries.  But Aaron wasn’t buying it.

All through the store…thankfully in a quiet voice…Aaron told me over and over that I was a part of this crazy because of the Coronavirus.

“You’re just buying that because of Coronavirus,” he muttered as I bent over the sandwich meat.

“You just want that because of the Coronavirus,” he said again as I added coffee to the cart.

Seeing him in the check-out line, so still and serious, made me very sad.  All the times I’ve wanted him to be quiet and now he was…but for a reason that yanked at my heart.  He was most uncomfortable…most uneasy…most worried.

This whole scenario of our current lives is new to me…new to all of us.  Watching Aaron’s manner and seeing his worried face was a real insight into how this strange time is new to him as well and is affecting him.

Normal is gone for now, and for who knows how long.  So, for many of us with special children…children who respond strongly to their environments…this may be an extra stressful time.

Let’s encourage each other and pray for one another.

And if you’re out and about in the crazy, and you see a mom with a special-needs child, give her an extra big smile, would you?

 

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Number 10 Song

I was already fairly saturated with Aaron issues when he and I walked out to the van this morning.

Him standing outside my bedroom door earlier, wanting me to come look at his bed – and me knowing what I would find.

“Aaron, is your bed wet?” I asked.

“Yes,” he answered.  “And my pajamas.  Come look!”

My day was already taking a track I did not plan.

Him saying he didn’t want to go to his day group today because of the Valentine party.  No surprise there since he doesn’t like parties, of all things.  Too noisy, says the loudest person I know.

Him wanting to take his wallet if he did go to Paradigm, even though he didn’t need money on a pizza day.  I know his plan.  Give money away if he can get by with it.

Him wanting to take snacks even though food was to be provided today.  Again, his plan is to give food away even when he’s not supposed to do that.

There I was, redirecting and being level and not reacting and listening to him tell me that everything was my fault – including any possible seizures he said might happen today.  I didn’t hear a seizure last night and he doesn’t act like he had a seizure, but he was laying claim to that possibility in an effort to stay home.

He finally came around and compliantly went to the van with me, where he immediately wondered where his CD of choice was.  I had removed it earlier this morning along with a stack of others.  Varying choices I offered were not acceptable as we sat there in the driveway.

Finally, I saw one!  The Oak Ridge Boys Ultimate Collection!  He had wondered only yesterday if we had any other Oak Ridge Boys CDs.  We had just finished listening to the two that I remembered having, so this other one I saw laying there was a real find!

Or so I thought.  Aaron was not impressed.

He mumbled something about the other Oak Ridge Boys CDs…and I knew what was going on here.  He really wanted to listen to this third CD but not without completing his order of listening.  I knew that there was no other choice but to go back in the house to get the two CDs that were in that stack I had earlier removed.

“Seriously?!” I thought as I headed in the house.  “Why are you so…so…RIGID??!!”

I climbed back in the van, carrying the hopeful source of Aaron’s contentment.  Then I learned that Aaron didn’t want to listen to both of the CDs again.  He wanted…NEEDED…to complete the one that we had not finished yesterday.  This must be done before he could begin the new CD.

“We were on number 10,” he flatly said as he pushed the CD in the slot and pressed the button until number 10 was on the screen.

Aaron visibly relaxed as number 10 song began to play.  He was still and quiet, his hood pulled over his head and his gloved fingers entwined together.

 

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I say this often, but Aaron’s world was made right in that moment.  He seriously must finish the prior CD by the same artist before he can begin the new CD.  I do not feel that angst that Aaron feels, but I will certainly feel his angst if I do not cooperate with his very ordered view of his world.

I can’t be selfish, tired and frustrated as I may be at that moment.  Selfishness will only increase Aaron’s frustration and will lead to more conflict which will not in any way help our situation.

Aaron needs understanding.  That’s all.

Oh, and a dose of love.

He doesn’t want hugs and kisses, gooey words and all that sort of stuff.

He wanted me to get the CD, and to not make him feel dumb for needing it.  This is Aaron’s love language.

As we drove away, finally, the number 10 song was playing.  It’s a pretty song, and suddenly my heart was very touched as I listened to these words:

“You’re always in my heart, and you’re often on my mind.”

My love for Aaron was being sung in that number 10 song.  The tears trickled from my eyes, but I couldn’t let Aaron see me cry.  My tears make Aaron very uncomfortable.

“I like that song,” I said as it ended.

“Do you want to play it again?!” he asked with excitement.

“Sure!” I happily answered.

My affirmation, on every level, was just what Aaron needed.  But so did I.

Aaron is often on my mind for less than pleasant reasons.  Worries.  Frustrations.  Anger.  Dilemmas.  Prayers.

But Aaron is often on my mind for happy reasons as well.  Joy.  Humor.  Uniqueness.  Thankfulness.

He is always in my heart, for all the above reasons.

He needed more than Skittles and a goofy love card this morning.

 

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He mostly needed…and needs EVERY day…to know that despite my weariness and my worries, I get him.

Because I get him, I got his CD.

I liked the number 10 song.

That’s the BEST heart gift for Aaron…and for ME!!

 

 

 

 

The Good-Smelling Difference

Aaron was awake and out of bed very early Monday morning, especially considering the fact that he took a long time getting to sleep the night before.  We were late to bed on Super Bowl Sunday, and not just because of the game.  He and I watched a Dr. Quinn after the Super Bowl…a SUPER Super Bowl for us, by the way.  Aaron would tell you that the team we voted for WON!!  YAY!!

Aaron enjoyed watching the game with us.  He didn’t have many new insights, except for thinking that he heard something upstairs on fire.  What??  He was sure of it.

“I hear a snappeling sound!” he insisted.

Gary and I assured him that there was no fire upstairs, but finally he had to prove it to himself, so up the stairs he stomped – he does sound like a bull elephant! – and came back with the report that there was no fire upstairs.

“There’s the snappeling sound again!” he soon insisted once more.

Still no fire.

We eventually realized that the “snappeling” sound he heard was the sound of the player’s shoulder pads hitting together.  Who notices that sound?

Aaron does.  And isn’t that word just the perfect word for a crackling fire?

He didn’t eat much of the food I fixed.  He did try to convince me when I told him that he could have two Rice Krispie Treats that this was, indeed, only TWO!  😊

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On this Monday after Super Bowl, Aaron had an autism doctor appointment.  Aaron would tell you that we were eating lunch at Old Chicago as the main event, with the doctor visit as an annoying side trip.

He was chipper and happy, eating some breakfast I fixed him, but by the time we left the house later he had greatly changed.  I think he had a small seizure that I didn’t totally catch, only seeing the end of it.  Therefore, on the way to the doctor he was very tired, keeping his eyes closed most of the way.

The doctor does a good job with Aaron, trying to get him to communicate with her, but he was still draggy and tired…and his answers often very inaccurate.  She and I end up, as we did yesterday, talking about my Aaron concerns.

And my concerns seem to grow.  Weight loss…behaviors…seizures…a hard time on many nights going to sleep.

Adding a medicine…the concerns with that…

Just on and on.  And so many issues are unknown, even to doctors, when it comes to the brain and to the impact of long-term seizures and meds.

Now I was feeling dreary and burdened as we drove away, Aaron’s eyes closed again.  Even inside Old Chicago, as Aaron managed to eat two pieces of pizza, his mood wasn’t his usual over-excited self.

But on the drive home, Aaron and I had fun watching the temperature drop number by number as a cold front blew through.  He thought it was great fun!  It was also great fun to anticipate getting a haircut, which he loves.  I had signed in on-line and he was happy – but still very tired.

We ran home for a quick stop and to grab our jackets.  Then I told Aaron that I was sure a few Reese’s Cups would perk him up.

“Yeah!!” he agreed.

He carefully took three small ones, put them in his coat pocket, and off we went.

I never know when we go to Great Clips just how the visit will be.  As we walked in the door, I was just happy that Aaron didn’t barge in and loudly say,
“I’M HERE FOR A HAIR-CUT!!!” – as he so often has in the past.

However, yesterday I realized that we didn’t know any of the stylists.  I could feel discomfort invading my happiness.  I just never know if someone will understand Aaron or stare at him in that all-too-familiar way that makes me half angry and half sad.  I was hoping for someone who knew Aaron and was good with him.  Instead, we were given the perfunctory greeting as we entered, mixed with inquisitive stares.

UGH!!!

Aaron and I sat in our chairs, him totally unaware of my concern.  He wanted to know what Bed Head meant as he examined the products on the shelf, his voice still a little slurred.  Finally, he sat down and carefully pulled his Reese’s Cups out of his pocket.

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Two were placed neatly on the chair beside him, and the third he slowly unwrapped.  He ate it, and then repeated the action two more times.

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By then, the stylist walked our way and called his name…and I, with huge relief, saw that Aaron was in very good hands.

I knew he was in good hands because of the stylist’s big smile and her comfortable conversation with Aaron.  There was none of the awkward staring or obvious discomfort that we sometimes encounter when we are out.

Aaron sat in the wrong chair, one he has often used, but she handled it so easily.  Soon Aaron was sitting in the correct chair as the stylist asked him if he watched the Super Bowl.  Perfect question!

“Yeah!!” Aaron answered.  “Who did you vote for?!”

“I wanted the Chiefs to win,” she answered.  “Did you?”

“Yes!!” replied Aaron, rubbing his hands together in delight.

They talked about Super Bowl snacks as she cut Aaron’s hair and trimmed his facial hair, and soon she was done.

“Aaron, would you like some good smelling stuff in your hair?” she asked.

“I need to ask Mom,” he said as he looked my direction.

“MOM??” he yelled.  “Can she put some good smelling stuff in my hair?”

I laughed and said yes, of course, knowing how very happy Aaron would be with this turn of events.  He doesn’t have enough hair for good smelling stuff, but that’s not at all important.

Smiling, good smelling Aaron left there a very different person than when we walked in.  I did as well, I assure you.

And once again it hit me just how big a difference one person can make in another person’s day….specifically, in Aaron’s day…and thus, in mine.

Later that evening, Aaron was waiting on me to finish some things in my bedroom.  He was hovering, as he so often does.

“Mom!!”  he suddenly exclaimed.  “Do you want to smell my hair?!”

Normally, that would be a no.  A big no.  But not today, thanks to our difference-making hair stylist.

“Sure I do,” I answered.

Aaron chuckled in joy as I took a sniff.  He was rubbing his hands together, a sign of his total happiness.

Who would imagine that such a simple thing as good smelling hair stuff would bring such happiness to Aaron and to me?

His hair still smelled good, but more importantly, his heart was light and happy.  The residual nice scent was like the residual warmth in our hearts, both of us.

Never underestimate the difference you can make in someone’s life, especially in the lives of our special ones.  It isn’t necessary to spend money or to take tons of time.

A smile…a word…the warmth of understanding…are all such sweet gifts to each of us, parents and children alike.

That good smell lingers for such a long time!

Longer than the good smelling stuff in Aaron’s hair, trust me!   😊

 

 

She Took It All

One of Aaron’s favorite things to eat is a Cheddar Pasta Salad from the deli at Dillon’s.  The name has actually changed to Cheese Pasta Salad, but to Aaron and to me it’s still Cheddar Pasta Salad.  Aaron always gets a large size, watching carefully to see that the container is filled to the brim.  We go so often that we’ve gotten to know some of the deli workers, who can always guess what we want when we walk up to the counter.

Yesterday afternoon Aaron asked me if he could have a Cheddar Pasta Salad, so off we went to run an errand before the Chiefs – Titans football game, and then end at the Dillon’s deli.  Things were going smoothly, and I was happy that we would make it home in time for the game.

It doesn’t ever seem to matter how carefully I plan our entrance into Dillon’s.  Aaron always seems to somehow get ahead of me as we make our way to the deli counter.  He is definitely on a mission!

The problem is that he will often push in front of people if there are others standing at the counter.  Therefore, he and I are in a foot race as I try to head him off at the draw, before he offends the others who were there before us.  Aaron doesn’t care one bit about waiting his turn when it comes to his Cheddar Pasta Salad.  He doesn’t notice if people are staring or are angry, if they sigh or if they edge closer to the counter.  He only has eyes for the food behind the counter window, looking quickly to see if there is any Cheddar Pasta Salad.

Yesterday there was a mom there with her very cute little girl who was maybe four years old.  I made it to the counter just a few steps behind fast Aaron, just in time to touch his arm and remind him that someone was before us in line.

Aaron was very happy to see that there was some Cheddar Pasta Salad in the tray.  “Look, Mom,” he said.  “They have Cheddar Pasta Salad!”

“That’s what we’re getting, too!” said the friendly mom.  “It’s her favorite!” she added as she looked down at her smiling little daughter.

In an instant, I knew that we were in a dilemma.

In an instant, Aaron had figured out that there was NOT enough Cheddar Pasta Salad for both him and the little girl.

And in that instant, Aaron’s face fell.

“Oh boy,” I thought to myself.

The mother was telling me that her little girl just loved the pasta…that she never ate the broccoli…that the mom ate the broccoli…

“There won’t be enough for me!!” Aaron blurted out.

“Yes, Aaron, there will be some for you,” I assured him, while I felt dread creeping up my spine.  How far would Aaron go in his disappointment?  Would he become angry?

The mother also told Aaron that they weren’t taking all the salad, but Aaron could see that there would not be enough for his large container.

He stared down toward the floor, not making eye contact, as he tried to process the fact that these interlopers were taking HIS Cheddar Pasta Salad!

Their transaction done, the mother told us to have a good day and told Aaron to enjoy his salad.

“Shut up,” Aaron softly replied as he continued looking down at the ground.

I was horrified!!!!

The mother and cute daughter were walking away as I sternly told Aaron to say thank you to them.

He refused.

I told him through firm lips that he would NOT get his salad if he didn’t say thank you.

The girl behind the counter, new to us, was waiting on my order.  I fumbled out that we would take the rest of the Cheddar Pasta Salad.

“She took it all,” Aaron flatly said.

My face was flaming.

The mother and little girl were a short distance from us.  The container…the medium size and not the large…was being filled with the last of the Cheddar Pasta Salad.

“THANKS!!!” Aaron suddenly bellowed.

And the mother turned and smiled at us.  I wondered if she could see the distress on my face, and on Aaron’s as he processed taking home a medium container.

Not a LARGE!!

Then the mom and her daughter turned and walked right behind us.  I touched her arm and whispered to her.

“I don’t know if you heard what he said, but I’m so sorry,” I told her.

She said she didn’t hear anything.  I softly told her that Aaron has autism, but I could tell she knew.

“Don’t even worry,” she kindly said.  “My older daughter works at Open Doors with autism all the time, so I totally understand.”

Relief washed over me…partly because they hadn’t heard Aaron’s comment and largely because she was so kind.

I thanked her, turned back to Aaron…who was staring dejectedly at his medium container…and then she said to me:

“You’re a very good woman.”

I was so surprised!  I thanked her.

And I blinked back tears and swallowed the growing lump in my throat.

I was so happy that now Aaron was holding a jar of Chili Fig Spread, excited about his new find, moving on to the next thing as he always does.

He is so oblivious to other’s emotions.  So clueless as to the stress he inadvertently creates.

SO unaware of how embarrassing and wrong it is to tell someone to shut up!

But he did just that.

And he will do it again.

So, we give the lectures and we live the example, but none of that can permanently re-wire his brain.

I picked myself up off the floor, figuratively speaking, as I gathered my wits about me and picked up the pieces of my shattered motherly pride.

Yes, my son is the one who told you to shut up.

But this is our life with Aaron.

Aaron, who wants life to fall into place his way and when it doesn’t, is hardly able to do anything but to tell the offender to shut up.

But he DID say thanks!!  I’m so thankful for that!!

I DID give him his Cheddar Pasta Salad.  Look at his sad face, though.

 

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His medium…not large…Cheddar Pasta Salad.

“She took it all,” he said over and over as we walked through Dillon’s.

“She did NOT take it all!” I reminded him over and over.

We actually got a lot in return at that deli counter.

A large serving of kindness goes a long way!

 

MERCY!! AARON!!

I’m a southern girl.  Well, from southern West Virginia – born and bred – so no matter what the Civil War folks say about my home state, I still consider myself to be from the south.

I guess that’s why sometimes I just want to look at Aaron when he’s being a particular form of disagreeable and just say, “MERCY!!  AARON!!”

And then tell him that he just needs to hush!!

When I talk to Andrea or Andrew on the phone, Aaron invariably barges in the room and wants to talk.  This happened on Saturday evening as Andrea and I were gabbing away.  I knew Aaron would persist until I caved, so I finally put the phone on speaker and off Aaron went.

He was particularly fixated on Luigi’s Mansion 3 – his newest Nintendo Switch game.  And he was even more fixated on going over Luigi and Gooigi.  I think I spelled that right.

He wanted Andrea to know who Gooigi is.  What Gooigi is made of.  What color Gooigi is.  What Gooigi looks like.  What Gooigi does.

Andrea, ever patient with her brother, commented on everything Aaron said.  She even asked questions…good questions…which fanned Aaron’s flames and off he blazed.

Talk, talk, talk, talk, talk.

It took me awhile to put out the flames.  I usually have to end the talking by telling Aaron to say goodbye, after he has pushed me away several times from taking back the phone.

Never once does he ask about Andrea or Kyle, or Darcy or Oakley or Aries or Siggy…all dogs, by the way.  😊

For some reason on Sunday evening, Aaron kept referring to that phone call.  He declared that I only wanted to talk to Andrea…that I never talk to him (REALLY??!!)…that I would hardly let him talk to her…and so forth and so on.

Everything is bad to Aaron when he gets like this, including the fact that I am a bad mom.  I eventually shut down when this happens, meaning that I do not fan the flames of Aaron’s anger by things I say.  Even my eyes – “Don’t squint your eyes, MOM!!”…or my voice inflections, can increase his anger.

Nothing that I say helps.  Nothing that Gary says helps.

Aaron’s lack of empathy and his inability to connect the dots like we do is a most frustrating part of his autism.

The next morning, weary and bothered, I thought of how my friend – a manager at Aaron’s day group – deals with these issues on the day after they occur.  Aaron often doesn’t want to go to Paradigm on that “next day” after he has blown it, but Barb always reminds him of an important truth.

“It’s a new day, Aaron,” she says.  “We just start all over and don’t let yesterday bother us.”

Thinking of that…of a new day…reminded me also of the wonderful promise in Lamentations 3:22-23:

The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.”

God’s love and mercy to me, no matter how much I sin, is new every morning.  And I know that I must also face every new morning with Aaron in the light of God’s loving-kindness to me.

If God is so loving and kind to me, how can I be any less to Aaron?

That next morning was still a little rough on Aaron’s part.  And then when I picked him up in the afternoon, as I watched him approach the van, I saw him stop and turn, running back into the building.

He returned, holding a paper that blew in the wind as he ran toward me again, his face all smiles.

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“MOM!!” he said as he got in the van.  “I colored this for you!”

With great delight he handed me this picture:

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I was so touched.  So amazed.

Amazed that Aaron sat still long enough to color.

Touched that he wanted to mend our fences in such a sweet way.

And both amazed and touched that it was a cross he colored for me.

You see, it’s because of the cross that I can even begin to love Aaron as I should, especially when he is at times so unlovable.

It’s because Jesus died for me, and because He is my Savior, that I AM loved and that I CAN love.

And I love how the old King James Version says that verse I wrote earlier.  “It is because of the Lord’s mercies that we are not consumed, because His compassions fail not.”

I am not consumed by hatred and sin or God’s judgment, but only because of God’s love and mercy.

Love and mercies that are new every morning.

Like I said, how can I love Aaron any less when I am so loved by God?

One more thing.  The cross is also the reason that I can bear the sadness and fear of Aaron’s 3:00 a.m. seizure today, and another one later.  The reason I can see him sleeping again now and know he may likely seize again.

The reason I can bear up under the disappointment of our doctor day being canceled…because doctor day means, to Aaron, eating out day.  And he does LOVE eating out!  It’s always a fun and happy day, but not today.

Aaron goes through these disappointments and rough days often, which means I do as well.

But like the verses above said, great is God’s faithfulness.  He doesn’t leave me to handle it all alone.  He is right beside me, my best friend, with His mercies and love that give me His peace that passes understanding.

Speaking of understanding, I won’t even go into all the detail of having to wash Aaron’s favorite fuzzy blanket today because he spilled coffee on it…and how it’s the only blanket that he wants to use on his lap when he’s at his desk…or on the couch.

About trying other blankets.

Rejecting those blankets.

Checking his blanket in the wash.

Observing me putting it in the dryer.

Following me around the house because without a blanket he can’t sit or lay.

MERCY!!!   AARON!!!

In the Crosswalk

What is it with Aaron and crosswalks??!!

I was asking myself this question yet again yesterday as Aaron and I exited Wal-Mart.

I could also ask the question, “What is it with Aaron and Wal-Mart??!!”

Oh, the stories!

As we got out of the van yesterday, while we were still rather obscurely hidden in the parking lot, I reminded Aaron to pull up his jeans.  He did that while tucking in his shirt, but for some reason yesterday his shirt tucking had a rather dramatic and unsettling beginning.  It involved Aaron fully sticking his arm down the FRONT of his pants, getting his shirt settled down there, and then working his way around the remaining waistband.

I told you it was unsettling.

“Aaron, good grief, you don’t need to make such a production of tucking your shirt in,” I instructed him as we walked through the store and he decided that his jeans and shirt needed repositioning several times.

Several times in the same manner mentioned above.

When will I ever learn to quit walking ahead of Aaron in Wal-Mart?

You would think after the nightie story and the falling cereal display story and the singing story…that I would know better.

I was in full “ hurry-to-the-van-while-mentally-checking-off-my-to-do-list-and-plan-my-next-stop-for-that-one-missing-item” mode as Aaron and I exited Wal-Mart.  Which means I wasn’t paying attention to lagging Aaron.

Instinct kicked in, I guess, because I turned around IN the crosswalk, with cars and staring drivers on either side of us, just in time to see Aaron pulling up his jeans and tucking in his shirt.

And doing it in that same disturbing manner!!!

IN THE MIDDLE OF THE CROSSWALK!!!!!

“AARON!!!” I calmly insisted, “STOP IT!!”

I said this while continuing to walk as if nothing was amiss at all.

Aaron knew then that he had erred, so he scurried up beside me as we left the embarrassing crosswalk.

“Well, I had to pull my pants up!” Aaron explained.

“In the middle of the crosswalk?!” I asked.

“What’s wrong with that?” Aaron questioned.

I just took a deep breath, reminded myself not to shame Aaron, and proceeded to once again remind him of how some things are best done in a less public setting.

Trust me, many of Aaron’s actions are best done in a MUCH less public setting!!

But Aaron truly doesn’t have a concept of social norms like you and I do.  No amount of proper parenting, wise advice, careful instruction, and repeated modeling of acceptable behaviors has…or ever will…change him.

I mean, he does show some improvements in some areas.  He hasn’t made his loud farting noise with his mouth in the middle of Wal-Mart in some time, come to think of it.

He can be so funny, but he can also be so exhausting.  The exhaustion is mostly mental for me and Gary with some emotional thrown in as well.

A big part of it is Aaron’s talking.  He loves to follow us around the house, sometimes a LOT, and talk…always a LOT!!

Our son, Andrew, drove home from Indianapolis for Thanksgiving.  Aaron had fresh ears to listen to all his talking, but he also had competition.  The competition comes into play for Aaron because now he must share our attention.  He is not the only person in the house, and he must share his podium with his brother.

This is difficult for Aaron, try as he might to be patient.  Another issue is the topic of our conversations.  Aaron’s topics are typically about aliens, Star Wars or Transformers or Terminators or whatever else he is watching, relational issues at his day group, and more about aliens and outer space and droids and what-do-we-think about aliens and outer space and droids, etc., etc., etc.

All of us are like the drivers in the crosswalk, where Aaron has the right-of-way and we must wait for him to cross.  No amount of confirmation from us toward Aaron can change the fact that his mind-numbing conversations dull our responses to him…and he senses this.

He also truly wants to be the ONLY one talking, and this is where we must step in and remind him to take his turn.  This creates anger on his part and resentment toward the person who has pushed him off his podium, albeit unwittingly, but done none-the-less.  We all understand this about Aaron, and even expect it, but still it’s tiring.

On the day before Thanksgiving, Gary got home early from work so we along with Andrew picked Aaron up from his day group and went out to eat in Old Town.  Aaron had a seizure early that morning, and another one about an hour before we picked him up, but it didn’t dull his tongue.  Not one bit.  😊

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But my favorite picture of our Thanksgiving was when Aaron waddled into the kitchen wearing his shark blanket – a gift from Andrea and Kyle for his birthday – and proceeded to continue talking.  It was just hilarious to see him standing there, oblivious to how he looked, and still talking up a storm.

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Again, we were trapped in the crosswalk…all of us with hidden smiles on our faces…and Aaron unaware of how comical he looked.

Living with Aaron isn’t always easy, especially when we’re already stressed about other life events and concerns.  Having to stop on a busy day for people in the crosswalk isn’t always fun, either.  So, when we’re rushing to get ready for the holidays in the midst of having some remodeling done, with lots of furniture to move around and mess to clean up – thanks for your awesome help, Andrew!! – and Gary is having foot surgery on Monday and will be incapacitated for a long time in a house full of stairs!! – and there’s decorating and shopping and surgery prep and just LIFE!!…

Those crosswalks can be very, very irritating and draining.

It helps to be able to smile and sometimes laugh and to think of Aaron in his shark outfit, not to be derailed from talking!

The pulling up his pants thing, though.  Some things are best forgotten.

My apologies to all the drivers at that crosswalk.

It was memorable, I’m sure.  😊  😊

Aaron usually is.

 

Keeping Everything in A Row

Aaron was busily preparing his little corner of the world one recent night as we got ready to watch an episode of Dr. Quinn.  His typical preparations include his snack or snacks of choice, often placed in a bowl; his drink; his hand towel that is always with him; his blanket that is always over him as if he is a nursing home resident; his Nintendo DS beside him even if not played; his video remote; and his chair and ottoman placed just so.

It’s exhausting, unless you’re Aaron.  If you’re Aaron, this is standard procedure and no big deal.

On this particular night, Aaron had chosen his rather new bag of Jolly Ranchers to sit on the end table beside him…the end table that bears the scars of being placed right beside Aaron.

“MOM!!” Aaron excitedly said before he sat down.  “Here!  I want you to have these!”

He handed me way-too-many Jolly Ranchers, his face full of delight because he loves to share.  I hadn’t planned to eat Jolly Ranchers, but I wouldn’t disappoint his giving spirit for the world, so I cupped my hands and took his sweet gift.

He was getting situated under his blanket when he remembered something.

“Wait!!” he exclaimed.  “I need to get my trash can!”

Having lived with Aaron for so long, I didn’t need to ask what he was doing.  There are times that Aaron will use his trash can…and ONLY his trash can…for certain jobs.  For instance, every Christmas Aaron must have his trash can with him for whatever he deems it must hold, despite the large trash bags that the rest of us use.

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For whatever reason is in his mind, he knows when his trash can is the one that is needed for certain trash, and obviously our Jolly Rancher wrappers fit that mold on that night.

Soon we were watching Dr. Quinn, relishing our candy as we happily tossed our wrappers in the correct trash can perched between us…and all was right in Aaron’s world.

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Like the Bible verse that says there is a way that seems right to a man, there is most assuredly a way that seems right to Aaron…and he will not veer from it, if at all possible.  Pity you if you try to make him do so!

Yesterday, Aaron and I piled in the van for our ride to his day group.  Aaron loves listening to music and as we are still in dinosaur mode, we use CDs.  Aaron looks at each song’s number as he picks up the CD and checks the back for the song number and name.  He rubs his hands together with great enjoyment, laughs, and listens very carefully to each song.

Aaron often sings one phrase from the last song he has heard on his rides.  He will sing that phrase over and over, usually at home, while he is on his computer.  Never will I forget the time that we stopped to shop at Wal-Mart.  The last song he had heard was Shania Twain’s “Man!  I Feel Like a Woman!”  It was very interesting hearing Aaron walk through Wal-Mart and in his monotone voice saying more than singing…over and over – “Man! I Feel Like a Woman!”

The word “interesting” really doesn’t do it justice.  Though I’m sure that he and I were VERY interesting to more than one person on that trip.

Anyway, Aaron had chosen to listen to Brad Paisley.  We have several Brad Paisley CDs.  Something else that Aaron will do is listen to CDs by the same artist in order of their production date, written in microscopic print on the back of each CD.  Print that is seen only by Aaron.  We cannot listen out of order.  Nope.

We jumped in the van, with Aaron immediately reaching down to find the first CD in order, of course.  And of course, he knows that the first Brad Paisley CD in the correct order carries the date of 2003.  And the 2003 CD was not in the van.

We were still in the driveway, both of us looking for the 2003 CD, even getting out of the van to check behind our seats.  I ended up running back into the house and finding three CDs in the cabinet that he had missed.

“YES!!” he said, “there’s the 2003!!”

His joy was contagious as we drove down the road, his hands rubbing together quickly and his laugh filling the van.  What a difference it makes when Aaron can have things this seemingly unimportant set right in his world!

Last night, Aaron sat in his chair in his usual fashion as we watched TV.  I noticed that he was pulling loose threads from his ever-present hand towel and rolling the threads up into little balls.  Later, as we were on our way upstairs for bed, this is what I saw on the end table.

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I just smiled and shook my head.  How like Aaron and his life are these little thread balls, all rolled up and placed in a precise order according to Aaron’s plan!

And how important I felt it was for me to just leave them there.  I could have told Aaron to come back down and clean up his mess!  But this really isn’t a mess.  This is Aaron’s order, done Aaron’s way.

It’s really a beautiful picture of Aaron’s mind.

And a reminder to me that there are many times when I must understand Aaron’s way of living…a way unlike my own but of no less value.  Not try to brush it off as unimportant or messy or inconvenient, but to remember that Aaron is far happier if he is allowed to keep not only his ducks in a row, but also his CDs and his trash can and his candy…

And his thread balls!

Of course!

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