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.

 

Home Again, Home Again!

Hello!  Remember me?  I really haven’t dropped off the edge of the earth, though I have felt like I’ve done just that at times.  Seems like forever since I have had anything resembling a normal routine!

My husband and I just returned from a wonderful week in Texas with our daughter and son-in-law.  Aaron stayed at home with a caregiver.  All the preparation for our trip, our usual busy days, and then being gone surely made it hard for me to blog or to read the blogs I follow.  Am I ever behind!!

But it was so worth it to be away for a WHOLE week…to have time with Gary, and with Andrea and Kyle.  We had hoped that our son, Andrew, could join us from Indiana but racing is getting ready to start again and the team has more work to do than seems possible to accomplish.

Gary and I truly relaxed while in Texas.  No sight seeing trips since many venues were still closed, so we spent tons of time together talking, cooking and eating, watching various shows and sermons, shopping, and so forth.

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And let’s not forget the fun of seeing our Grand Dogs, including meeting Siggy for the first time.

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Aries
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Darcy

 

 

 

 

 

 

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Oakley
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Siggy

 

 

 

 

 

 

 

 

 

 

We also got to see Siggy climbing his favorite tree!

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And the patio table!

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Andrea and I had lunch one day by the bay near their house.

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We celebrated my birthday there on the 18th.

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And Andrea’s as well since hers happens on the 27th.

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We celebrated Father’s Day with Kyle’s parents who came over for the day on Saturday.  How fun to see Kent and Marie, and to have both dads together!

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Gary and I don’t typically get to share our special days with our kids, so this time was really extra special and wonderful!

Aaron stayed at home with Karlea, our excellent caregiver.  Aaron really loves it when Gary and I are gone, and he doesn’t hide it one bit.  He loves all the one-on-one attention…loves going fun places…loves not having bossy parents around…and REALLY loves eating out at restaurants or getting take-out every day.  Aaron was having his own version of a vacation while we were having ours!

But yet, as he always does, Aaron called multiple times every day.  I didn’t answer each time but when I did I would hear Aaron usually say, “HEEEEYYYY!!”  Or say no greeting at all but instead launch into whatever he had stored up to tell me about.

“Hi, Aaron,” I would say as I answered the phone.

“Mom!  We went to Olive Garden today and we got a salad!!  What’s that juice that’s on it???” he immediately asked one day.

Karlea had plenty of laughs, too, like the day they ate at Cracker Barrel.  Aaron saw the deer mounted on the wall, rolled his eyes, and said, “I just can’t believe they took a real deer and put it in a restaurant!!”

I answered the phone for one of his calls on Saturday.

“Hi, Aaron,” I said as usual.

“GUESS WHAT???!!!” he blurted out.  “You’ll be home DAY AFTER TOMORROW!!”

Then he added:  “Karlea said we need to get the house stick and span!!”  😊  😊

So, we are home and life is returning to our version of normal.  Shortly before our trip, Aaron and I went shopping.  He had a seizure that morning, and I wasn’t sure he would feel up to going out.  But he did, and we had a nice time, which made me extra happy because of how his seizures sometimes ruin his days

When we got home and sat down to eat lunch, I asked Aaron to pray.

“Dear Lord,” he began, “thank You for this food and thank You for having us a good time while we were shopping.”

There went my heart.

“Dear Lord,” I will add, “thank You for our trip to Texas and thank You for having us a good time while we were there!”

And thank You for bringing us safely home again to Aaron.

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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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!!!

I Love This Place!

For the past few weeks I’ve felt like I live in a snow globe.  I’m a figure that’s not fastened down, so when the globe is shaken I just fly all around with the snow.  Crazy, to say the least!

Gary and I knew that this was going to happen:

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Thankfully his foot surgery was planned and on our calendars many weeks ago.  We had time to prepare, even throwing in some minor things like having two bedrooms remodeled.  You know how that is.  Emptying the rooms of everything; deciding on what supplies to purchase; purchasing supplies; going through drawers and shelves and making multiple donation trips to Goodwill; the remodel itself (great job, Distinctive Designs!!); cleaning; putting everything back in the rooms; and heavy furniture up the stairs or down the stairs (thank you to our son, Andrew, home for Thanksgiving!).

Then there was decorating and preparing for Christmas with all the shopping and wrapping and mailing and cards and cooking yet to do.

Oh, and let’s throw in cleaning our big storage room two days before surgery!  Why not??!!

In the midst of it all, there is Aaron.  Aaron…trying so hard to maintain his normal.

Aaron’s normal is very vital to him.  His normal is as vital to him as breathing or eating.  Normal gives him stability and predictability, which he needs to maintain his balance.

Gary and I can roll with the flow, stressful as that flow may sometimes be.  Aaron…not so much.  When his normal flow of life is redirected…shaken like the snow globe…Aaron most often will react instead of handling the change.  Then whatever is causing his life change, as he sees it, becomes the enemy.

The enemy may be an event.  That’s why holidays, parties, trips, or other out-of-the-norm happenings can rock his world.  Aaron’s world is what he makes it.  His world is set and settled in his brain, everything in its place.  His days flow with an established pattern.  Can we all spell “ROUTINE?!”

The enemy may also be a person.  Any person who disrupts his pattern of life or his way of doing life becomes a huge problem to him.  Just ask his siblings about our Christmas family time every year.  We all know to expect at least one “Christmas Meltdown” every year.  The meltdown often involves some aspect of our family Christmas Eve Bingo game, which combines a party atmosphere with a lot of crazy thrown in from the annoying people who are on his turf and messing up his routine.

Autism at it’s finest, let me tell you!

When Gary and I arrived home the day of his surgery, Aaron was so very happy to see us.  I saw him scan over Gary’s huge wrapping with his ever-observant eyes, but Aaron never asked how the surgery went or how Gary was feeling.

Instead, Aaron talked up a storm as we got Gary settled in bed.  He ran up to his bedroom, returning with a soft blanket of his that he wanted Gary to use.  He ran outside in the dark and brought in our trashcans that were at the end of the driveway.  He kept looking for ways to help and was just SO happy to have us home.  I’m not sure how much of that happiness rested on the fact that his dad was all right or on the fact that we were home, at last, and now life could be back to normal.

Normal!  Right?!

Wrong.

Dad was in the guest bedroom.  Mom had to make trips down to Dillon’s for meds and food that sounded good to Dad and drinks to settle his stomach.  Dad wasn’t talking much and Mom was distracted.  People were calling.  Or coming to the house.

The morning after surgery, Aaron was getting edgy.  We knew it.  And Gary, bless his heart…in the shape he was in…managed to ask Aaron about his game he was playing.  Aaron was off and running then!  Talk, talk, talk!!  Talk about what he loved and what he understood and what mattered to him.

Honestly, Dad’s foot and leg all propped up on the living room couch didn’t matter to Aaron at that point.  How Dad slept didn’t matter.  Dad’s possible pain didn’t matter.

It seems heartless to us, but we know Aaron.  We know how autism is often defined by a narcissistic way of viewing the world.

We had some storms that first week.  It got rough.  My reactions weren’t always kind and loving toward Aaron.

Then after the snow would settle in our upside-down snow globe world, Aaron would look at us and immediately launch into talk of aliens and outer space and his latest movie and anything…ANYTHING…but real life and feelings and concern for us.  Then his anger would erupt if he sensed our lack of interest in what he was saying.

Just so exhausting.

One night after going around and around, Aaron regrouped quickly and stood by Gary in the living room talking about what show he was watching or game he was playing.  This was Aaron’s happy place with his captive audience.

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This past week, our second week post-surgery, Aaron came down with the crud bug.  Fever, cough, sore throat, aching all over.  A doctor visit, some meds, and he is better.  But again, a sick Aaron was a touchy Aaron.

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Until he thought of Christmas lights.

“Mom?” he asked on evening.  “Can we go look at the lights on the big white house?”

It wasn’t necessarily what I had time or interest in at that moment, but I saw the hope on his face and so off we went.  We saw the lights and then drove on to look at some other lights close by in several neighborhoods.

A couple nights later, after our neighbor mentioned a near neighborhood that was all decked out in lights, Aaron and I went out again.  House after house was glowing and flashing and bright and fun.  Aaron was mesmerized, leaning forward in his seat and very still, with a smile on his face.

“I LOVE this place!!” he finally exclaimed.

It warmed my heart so much for him to express such joy.

It warmed my heart to be the one who showed him this place he loved.

I’ll admit that sometimes I don’t love this place where God has us.  Life with Aaron can be very tiring.  He requires or demands things from us that we at times have no energy or interest in giving.

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This place isn’t always bright and pretty and rewarding and fun.  Sometimes we wonder why we’re here and what we’re doing.

But this place is where God has put us.

Aaron is God’s gift to us.

Sometimes we don’t feel that sentiment.  Gary and I get weary…lonely…at the end of ourselves.

I’m sure the man Jesus…God’s Son…felt all that and more, thousands of times over, as He walked this sad earth.

And because Jesus walked with us, He also understands our weaknesses and our human thoughts.  He is here with us to give us His grace and enable us to do the same with Aaron.

Aaron may not always love this place, either.  When his life is askew and he is miserable, loving this place is the last thing on his mind.

But may he know, when the snow is settled and the storm is over, that HE is loved.

Loved by God, as are we…and loved by his parents.

May this place, where we are at the moment, be a place of love when all is said and done.

And may your place, dear one…hard as it may be…be a place filled with God’s love for you and through you.

Bright like the lights of this beautiful season!

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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.

 

Cool Aaron

My phone rang the other day and even before I looked, I pretty well knew it would be Aaron making his daily call from Paradigm, his day group.  Yep, there was Aaron on the other end of the call, talking the second I said “hello.”  He was excited and laughing about Chris, one of the Paradigm staff.

“Mom!!  Me and Chris are playing a game where I can’t talk!”

Well played, Chris, well played!   I just thought this.  I didn’t say it to Aaron.

“But Aaron,” I replied, “you’re talking now.”

“HAHAHAHAHAHAHA!!!!!”  Aaron bellowed.  “I guess I forgot the rules!!”

I laughed as well.  In fact, it felt very good to be laughing with Aaron.  I never know when I pick up the phone in what condition I will find Aaron.  Happy, sad, mad, crying, excited…I never am sure, so it’s with some dread that I answer his calls.

I had reason to feel dread this week because Aaron has been in a state of some anger and belligerence for awhile now.  We’re not totally sure of the why, but we are totally sure that his ups and downs are tiring to us and to his staff and friends at Paradigm.

This past Monday morning was rough at home.  I always let Aaron decide if he’ll go or not, knowing that forcing the issue is a recipe for disaster.  But Aaron also knows that if he does go to Paradigm then he gets extra treats and his meal of choice over the weekend.   He nearly always decides to go, but my reward system can also come back to bite me because the reason he goes is sometimes just for the future reward, and this stresses him to the point of bad behaviors.

Sometimes it’s just a perfect storm for a stormy day from Aaron!

Monday was that day.  Anger at home…then a calming…a fun ride to Paradigm because his music cheered him…and my last admonishment as he left the van.

“Aaron,” I said, “try to have a really good day.”

“I can’t make you any promise,” he seriously replied.

And I had to laugh at that as he walked away.  He was borrowing my often-used phrase when he tries to pin me down to doing something at a certain time, and I tell him I can’t make a promise.  How well he listens and mimics when it suits him!

And boy, it’s a good thing he didn’t make a promise to have a really good day because it was anything BUT a really good day!!  I’m very thankful for the patient staff at Paradigm!

Tuesday saw more issues at home, though not as severe as the previous day.  I was encouraged by his good day at Paradigm, but our evening at home hit bottom again.  He was not happy that Gary and I talked to our daughter on the phone before supper, in our bedroom with the door locked so that Aaron couldn’t come in and interrupt.  Aaron was very rude before supper and during supper.  Tough love ensued, ending with Aaron’s Cheddar Pasta Salad being taken away by Dad before he was through…and all his snacks being bagged up by Mom and put inside the locked van.

Well!!

Aaron finally calmed down as the evening progressed.  He turned a corner, looked at me as we watched a show, and surprisingly…and nicely…said, “Mom, I’m sorry.”

“Thank you, Aaron,” I replied.  “I’m sorry, too.”

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

But the snacks stayed in the van, a test of his sincerity.

The next morning, yesterday, saw him irritable again and not wanting to hurry out of bed or hurry to get himself ready.  I don’t tell him to hurry – I’ve learned better – but he knows the underlying theme.

“Don’t rush me!!” he stated.  “I have no time to hurry!!”

Oh, Aaron!  I want to both laugh and cry when he talks that way!

So, this morning, we were getting ready to go to his yearly support plan meeting.  Again, he was sleepy and frustrated, and dreading this meeting.  It helped that we meet at Carlos O’Kelly’s and get to eat out, but Aaron still does NOT like meetings.  He wonders if he can stay at Paradigm, can he stay at home, and all sorts of other concerns.  I felt bad that he was scared so I assured him that things are staying the same for now, but still he was on protective mode.

“Mom, I’m telling them that you and Dad are starving me!” he declared, threatening to tell them about the locked away snacks.

Again, I didn’t react and told him he had every right to do just that.  But at the meeting, as he chomped down salad and chicken fingers and French fries, he was happy and loud and talked away at everything except his starvation.

We’ve been very weary lately, honestly.  I don’t know if his mood swings are because of medicine side effects…because of strong low fronts moving through this week…because of seizures last week…because of who knows what??

As we signed papers today, I laughed at Aaron’s signature.  This is his very favorite way to sign his name.

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Aaron has such a very hard time playing by our rules…the societal rules that dictate how we talk to others and respect others and give and receive love.  Try as we might, we cannot get him to tell us why he’s unhappy…at least not if his emotions are coming from someplace other than the fact that his snacks are locked away or he can’t stay home on his computer all day.

Aaron can convey plenty of facts.  What he can’t convey easily are his emotions…his deep-seated reasons for his angry actions.

Gary and I know this about Aaron, but sometimes it’s hard to remember it in the heat of battle.  That’s when we need to back away…take a deep breath…lean on each other and God…and remember one more thing.

Aaron Moore is cool.

He’s cool when he tries to sneak another notebook in to Paradigm to give away, knowing he’s not allowed to do that.

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He’s cool when he leans against my legs after he’s been so angry.

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He’s cool when he’s trying to feed an ant on the table at a restaurant.

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He’s cool when he’s giving and sharing.

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He’s cool when he’s “drying the bubbles off,” as he says.

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He’s cool when he’s playing a trick.

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He’s cool when he says, “MOM!!” at the grocery store and laughs and laughs at my reaction to him holding my LEAST favorite creature!!

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And in so many other ways, our unique Aaron is very cool, even when he makes me lose mine.

Let me remember that, Lord, in the heat of the moment.

Let me remember that you crafted and created Aaron’s coolness.

Aaron Moore IS cool!

 

Mom, Don’t Be Sad

Blah!  Bleh!  However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron.  The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo.  Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it.  On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought.  I guess it’s another home day for Aaron.  I had a must-do trip down to the air base scheduled, so off I went, minus Aaron.  But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm.  I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties.  I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing.  It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world.  Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm.  He was still happy when he called me later to give me a report on his day.  And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

 

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Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it.  He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always.  I reminded him that an Xbox is too expensive to buy for a weekend treat.  Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions.  Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate.  “Do you sell any CHEAP Xboxes?!”  😊  😊

Once home, Aaron helped me carry bags in the house.  He helped me make spaghetti for supper.  Never mind the broken noodles all over the stove-top.  He was trying his best.  He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

 

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He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday.  And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

 

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On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer:  “Happy Birthday to you!  Happy Birthday to you!  You look like a monkey.  You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park.  We saw beautiful Kansas prairie grasses.

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We saw lots of very old, dramatic trees.

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Aaron even happily posed for a picture.

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But best of all, we got up close and personal with this gorgeous deer.

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What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road.  But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading.  And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair.  That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed.  Like he went from being manic to being angry again, for whatever reason.  He was just upset for no reason that I could see.

He said he was not taking his pills, but he did.  He said he was not taking his CBD oil, but he did.  He said he wasn’t going to bed, but he did.  He said he wasn’t going to brush his teeth, and he didn’t do that.  Of course.  😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness.  He noticed my change every bit as much as I noticed his.  He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said.  “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly.  No talking allowed.  But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor.  “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment.  And so did I.  But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them.  Tears of frustration and sadness.  Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am.  I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean.  The ups and downs of life take a toll.  The good news and the bad news.  The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well.  Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God.  He reminded me as I laid awake for a long time of His love for me and of His unending grace.  Grace upon grace.  Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness.  He never lets me down or leaves me to my own resources.  He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise.  For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

 

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