Listen to The Music

The self-checkout at our nearby Dillon’s grocery store plays music when it’s time to take your receipt.  Only about four notes play over and over until you get your receipt.  It’s just another automated reminder and no big deal.

Unless you’re Aaron! 

Aaron is absolutely fascinated by the little electronic jingle.  Most of us would barely notice it or would brush it off as annoying. 

Again, not Aaron!

Every time Aaron and I go through the self-checkout line, he leans way over the scanner when he knows that I’m done.  He wants to clearly hear the music.

I took a picture of him a couple weeks ago as he listened to the notes.

There he was, a grown man with his long flowing sweater on, leaning way over the scanner. 

He did not care one bit about how he looked.

He did not care one bit about who thought what.

Here is something I have learned in our life with Aaron.  I have learned that it’s best if I also do not care one bit about how he looked.

And it’s best if I do not care one bit about who thought what.

Aaron doesn’t just march to the beat of a different drummer.  He marches to the beat of a whole different symphony!

He will stop to listen and observe and comment about things that most of us don’t even see.

He takes the time to listen to the music of life around him in ways that most people do not. 

So when he leaned over the scanner this last time, instead of being embarrassed and looking around to see who was staring at us, I just laughed and joined in the fun.  I didn’t grab my receipt right away so that the music would play a little longer and Aaron could totally enjoy it.

And you know what?

I totally enjoyed it, too. 

Looking at the world…and listening to the world…with Aaron, in his way, really is such beautiful music. 

At least it is most of the time.    😊  😊 

Too Much Love!

I guess the best way I could describe Aaron and the subject of love is this: 

Aaron holds love at a distance, admiring the concept but not wanting or able to become too involved in the process.

Welcome to how autism colors every single aspect of Aaron’s life, and therefore ours as well…or anyone who is associated with Aaron.

Valentine’s Day has been on Aaron’s mind since soon after Christmas when all the red hearts and cute stuffed animals and boxes of candy appeared on store shelves.  Aaron flits from one shelf to the next, holding up items and laughing as he very loudly says, “MOM!!  Look at this!!  Can I have it??!!”

It’s all great fun as he zooms around finding lots of treasures.  This idea of love is safe as Aaron, ever hopeful about his quest for “things,” attempts to score a bag of candy or a cute trinket to tuck away in his room.

Aaron does love showing love, but on his terms.  Aaron’s terms are dictated by his inner workings and thoughts, deeply affected by the effects of autism. 

At our local Dillon’s just down the road, we have come to know Jody.  She is a joy with a warm and loving heart.  Jody has personal family connections to special needs.  She has come to know Aaron and loves to interact with him.  Jody knows that sometimes Aaron enjoys buying flowers there that he gives to certain people, often ones in his day group, Paradigm.

One recent day, when I was in Dillon’s without Aaron, Jody asked me if I thought that Aaron would like to give flowers to his friends at Paradigm for Valentine’s Day.  Dillon’s donates flowers to all sorts of local places like hospitals, nursing homes, etc. 

I thought that was a wonderful idea, so we made our plan.  Barb, Paradigm supervisor and second mom to Aaron (though she’s too young to be his mom!), gave me numbers, and Jody did the ordering, and Aaron and I did the picking up. 

Perfect, right?

Wrong.

Aaron and I were eating lunch after our Meals on Wheels delivery the day before the flower pick-up and delivery.  The day before the big Valentine party at Paradigm.

Aaron does not handle parties and celebrations well…at all. 

Aaron does not handle expectations well…at all.

“Mom?” he began as we ate our lunch, “you make me feel like you think I need to be in love with the clients.”

I knew we were in trouble with all this business of flowers and parties and LOVE.

I explained, much more than once, over the remainder of that day about the purpose of the flowers.  I knew I was fighting an uphill battle, though.

I especially knew this when yesterday morning, Valentine party and flower delivery day, Aaron stood by my desk early…eyes droopy with sleep…and spoke his first words of the morning:

“Mom, I feel embarrassed by this love thing.”

Sigh.

Over the course of the morning, I told him that I would take the flowers…that he didn’t need to go…that it was fine for him to stay home from all the party stress…and so forth and so on.

But no, Aaron felt compelled to go…to give this difficult day a try.

Later, as we picked up the big box of beautiful roses from the Dillon’s florist, one of the ladies there very happily looked at us and said:

“You’re delivering some LOVE!!!”

Bless her heart, she had no idea.  I don’t think she heard Aaron’s reply.

“No!!” he simply said.

But that simple reply told SO much!

I made it to Paradigm with grouchy overloaded Aaron.  He was showing anything but love, except to Barb when he gave her a gift he had made.  He managed a smile for a picture.

He fell on the floor when he backed up into a friend in a wheelchair (neither were hurt).  But that certainly didn’t help his love feelings.  The party atmosphere was loud and just too much for Aaron, but it always is, so we left and headed home…with Aaron feeling terrible about the fall and the unmet expectations.

The flowers were beautiful and made the clients, especially the girls, feel loved and happy.

Aaron enjoyed seeing a picture of his happy friends that Barb sent.  But again, seeing it from a distance was best for him.

Gary and I took Aaron to lunch at a small local Asian restaurant nearby.  This made Aaron happy.  He processed the morning as he talked about it with us. 

He also made us laugh and laugh at his reaction to only having ONE fork.  To Aaron, one eating utensil is never enough!  This is Aaron’s norm:

But he handled that one fork very well, which was an accomplishment worthy of note to me and Gary. 

Small victories are pretty big to us. 

Aaron’s happiness is big, too. 

A trip to Wal-Mart after lunch.  Some Red Hots and a new game for Valentine’s Day.  All these things made Aaron very content and happy.

We know to do life Aaron’s way when we can.  Beauty comes in all shapes and sizes. 

Seeing Aaron’s reaction to his one fork held a world of meaning to me and Gary. 

I’ll hold that in my heart on this Valentine’s weekend.

We love you, Aaron! 

Up close or from a distance, depending on Aaron – of course! 

Our Man Kid

A couple weeks ago I was talking to our daughter on the phone.  Almost always, when she and I are on the phone, Aaron will come bounding up to me and without lowering his voice he will ask if that’s Andrea.  I shake my head yes and so the hovering begins as he waits for HIS turn to talk to Andrea.  I finally let him have his time, knowing that if I don’t he will most likely linger close by until I do.

“ANDREA!!” he begins.  “Guess what game I’m playing now?!” 

And he’s off, talking about everything under the sun that has to do with his world.  He never asks about her life or how she’s doing.  Never.  But she understands that about her brother.  She laughs with him and talks to him about all his games and movies and answers his unusual questions about unusual things as seriously as if she’s talking to a lab manager about the proper way to conduct a molecular test. 

A couple weeks ago, she and I were talking about how Aaron is and how he must appear to others.  His conversations, his approach to life, his characteristics that others observe when they first see Aaron or if they know Aaron well…everything that makes Aaron who Aaron is.  Andrea said that he really is just a kid in a man’s body.

Then later that same evening, Aaron and I were talking to a neighbor and her young son out on our driveway.  This little boy just looked up at Aaron as Aaron went on and on about whatever.  Aaron was talking rather loudly, as usual, and all the time he talked he kept working his fingers together the way that he does. 

Finally, our young friend was able to get a word in…a question, actually.   

“Are you a man kid?” he asked Aaron.

That question went completely over Aaron’s head as he just barreled on with his topic of interest at that moment.

But it stopped me in my tracks. 

“What a perfect way to describe him!” I quietly told his mother. 

And how interesting that Andrea and I had said that same thing, yet not as precisely, just that afternoon.

A man kid. 

There stands Aaron, looking every bit like a man…and he is.  He has a man’s voice, a man’s physique, a man’s facial hair, and even a man’s balding head.  😊

But he acts so much like a kid!  And to other kids I know it’s a process to try to figure Aaron out.  We’re so used to him that we don’t often mentally step back and think of how it must be for children to understand Aaron.

Tomorrow is Aaron’s birthday.  Our son, who is a man, turns 36 tomorrow!

Our son, who is a kid, is exuberantly excited about his birthday.  He always is, every single year. 

If you ask him how old he will be, he pauses as he tries to remember his new age.  That number of “36” means nothing to him.

But oh, his birthday means everything to him.  Just ask our neighbors, some from around our circle that we don’t really know.  If Aaron is outside and he sees someone walking by, he briskly heads to the street.

“HEY!!” he yelled the other day to a couple of ladies.  “It’s almost my birthday!!”

They laughed and congratulated him as they went on their way.

And our man kid stood there rubbing his hands together in delight, with his deep chuckle bubbling up, his sweater flapping in the breeze, and joy all over his face.

Remembering that Aaron is a man kid helps us enjoy him.

But more importantly, it helps us understand him…and understanding Aaron is crucial in how we live with him and deal with him.

Happy Birthday, Aaron!! 

We love you, man kid!!

It Was a Trip!

Well, we are home from our trip to Gary’s beautiful Smoky Mountain hometown.  Days have been busy as we settle in, with Gary and I getting ready for another trip next week…this one without Aaron…so time is short for all the writing I would love to do.

As many of you know, our trek home was to help Gary’s sister, Sandra, when she returned home from having knee replacement surgery.  So, in a sense this was a working trip, and one that we are very thankful we could take.  A big thanks, as well, to all of you who were praying for us and for Sandra!

We brought Aaron with us, much against his desires…and at times, our better judgment.  😊  But we know that he needs to travel some with us, and that this will occur more now that Gary is retired.  Plus, family wants to see Aaron, even if Aaron is less than enthusiastic.

There is so much about traveling that is a struggle for Aaron, but the biggest issue is his autistic need to have his life in just a certain order.  Sorting and packing and stuffing things in a car is NOT Aaron’s definition of order.  I work hard to have his DVDs in one tote…his music CDs in another…his snacks in a snack bag…his sweater…his Handy Answer Garden Book…his computer that Gary packed in a box…  You get the picture.

Aaron does not.

We had already decided to take his stuffed snake and his very most favorite blanket.  Yet on the morning we were leaving, downstairs he came carrying a game system that did not even work properly and that he never uses.  And two extra Handy Answer books that I knew he would not touch.  These became his hill to die on.  No amount of persuasion worked to make him relinquish these suddenly all-important items, so in the car they were also crammed and away we drove. 

Gary and I were exhausted before we had even left our circle.

Aaron settled in his seat behind us, alternating mostly between watching a movie or listening to music, whooping or clapping way too loudly until we objected loudly and he quietened down until his next burst of excitement.  We saw cows and horses and sheep and rivers and lakes and interesting buildings.  But the buildings that Aaron loved most were ones where we stopped for gas, for inside those buildings were LOTS of snacks he did not have in his snack bag and slushies and hot dogs and all sorts of other possibilities. 

I had packed separate bags for our hotel stay that first night in order not to lug in all our heavy luggage.  Of course, Aaron’s arms became full of his two extra Handy Answer books that he did not need in the hotel room and his blanket that MUST go on his bed. 

Sigh.

Later, after a frustrating dinner at a REAL restaurant – as Aaron calls it – we were in our hotel room for the night.  The two Handy Answer books were on a table not to be touched again until they were carried to the car the next morning. 

And Aaron was snug in his bed reading his Handy Answer Garden Book with his blanket on top as it always is and always should be. 

This blog would be way too long if I included details of everything.  I’ll try to be brief by saying that Aaron really did do amazingly well considering all he had to handle.  He was bossy at times, but we knew he was just trying to control his surroundings.  It’s actually very interesting to watch but requires us to pull back and observe without our frustrations obscuring our view. 

We got to Sandra’s house the night before she came home from the hospital, so we had time to get situated and organized.  Gary got Aaron’s computer hooked up on the desk in his bedroom he used.  I got all his other things put in place…his star lamp we had packed, his Handy Answer Garden book within reach of his bed, his other two Handy Answer books off to the side to remain untouched, his music and his movies, his monitor on the nightstand, and finally his blanket on his bed just right. 

I got my part of the monitor plugged in and like we always do at night, I pushed the talk button and told him good-night one more time.  Getting everything all set up and plugged in was a bit of a challenge, so when I told Aaron good night I added:

“We’re up and running, Aaron!”

Aaron:  No, I’m not.

Me:  You’re not what?

Aaron:  I’m not up and running, I’m in bed.

A laugh was a great way to end the day!    😅😅😅

It was a blessing to be there to help Sandra, who is doing very well in her healing and progressing with her walking.  We got to spend time with lots of other family, which was wonderful!

Like I said, Aaron had so much change to handle and all of us were proud of how well he did.  All of us, too, were recipients of his anger and frustration that at times got the best of him. 

One evening Aaron was upset and very out of sorts.  Nothing calmed him and no one could reason with him.  But the person who helped him the most didn’t even realize that he held the key which set Aaron back on the right track.  Gary’s cousin, Bob, let Aaron talk about Star Wars this and Star Wars that.  Bob listened and commented and asked questions, and Aaron slipped back into his happy place where he is at home though he was not at home.  Aaron needed familiarity and having someone let him talk about a subject that was so out-of-place for all of us but Aaron was exactly the solution to ease his unsettled mind.

The last day and a half were particularly rough.  Aaron was done.  He was overloaded and spent and just so ready to go home.  He didn’t want to come out of his room.  He lay in his bed with the covers pulled over his head.  When he did emerge, he was defiant and angry. 

He focused his anger on Sandra.  I felt so badly for her. 

Sandra was his target because he knew we had come to help her, so in his mind his misery was her fault.  Nothing could dissuade him from that skewed perspective. 

My brother and sister-in-law came that night to visit, and somehow their attention…and their gift of a West Virginia Mountaineer cap that Aaron loves!…broke the angry cycle.  Jeanie’s great interest in those Handy Answer Books sealed the deal!

The next morning, we re-stuffed the car and said our goodbyes.  Aaron was happy as he could be, of course, as you can see in this picture with his Aunt Sandra and Aunt Mary Leah.

We soaked in the beautiful views as we drove away through those gorgeous mountains.

We smiled at Aaron wearing his ever-present sweater at a rest stop, no matter the warm temperature.

Now Aaron is home where he belongs.  Home where he is once again finding something else unique in the produce section at Dillon’s.

Home where he can settle in to watch a show with Mom and eat his snacks, with his blanket over him as it should be.

We’ll let the dust settle before we mention a possible Thanksgiving trip! 

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!   😊