Category: Special Needs Adults

Uncle Aaron: Out of Order

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

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

Aaron agreed.

I was not convinced.

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

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

She was confused but made no comment, only smiled.

I was holding in a belly laugh.

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

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

His place in our family went out of order.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yesterday, Aaron walked outside with Andrea and Ryker. 

 

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

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

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

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

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

Roses in the Right Hands

Yesterday, Aaron and I had so much fun making our annual delivery of Valentine roses to Paradigm, his day group.  The roses are given by our local Dillon’s store, made possible by our sweet friend, Jody.  

I have more fun with this than Aaron does.  He gets nervous about it, wanting things to go just so-so according to his perceived plans.

“Mom,” he told me on our way to Paradigm, “boys shouldn’t get roses.”

“Boys can have a rose if they want one,” I replied.

“But I see only women as being for roses,” he countered.

Oh Aaron.  

So, you can see that Aaron had his mind made up about how this should operate.  I gave him a little pre-event briefing as we drove there, and all was well as far as the guys getting a rose from Aaron.

The roses put smiles on many faces on this Valentine’s Day.  I never capture it in pictures the way I would like but here are a few shots.

Even Piper, the dog, had a rose offered to him by Aaron.

When I watch Aaron’s friends, either at Paradigm or elsewhere, I am so touched by each of their physical struggles.  Recently, Aaron casually mentioned a big change for one of his friends.  It hit me hard.  I wanted to hide behind a closed door away from Aaron and just cry for this dear person.

I watch these special friends of Aaron’s when I pick him up at the end of his day.  Many of their struggles are physical and easily seen.  Some are not so visible but are there just the same.  

I am inspired by their strength amid their daily difficulties…how they accept their situations and keep going…how they laugh and hug and give of themselves to each other.

I saw a quote about a rose that I loved.

“A rose doesn’t talk about its beauty; it just shows it.”

When I look at our special ones, I see a unique kind of beauty.  They don’t know how beautiful they really are…beautiful in the ways that count.  

They don’t talk about their beauty, but they certainly show it in how they love and how they live with resilience and acceptance and strength.  

They’re not held up by the world as models of fame and beauty.  

They don’t swoosh in on a red carpet, cameras flashing, people clapping, gushing with their own vain glory, the subject of tomorrow’s headlines and news reels and parades.

But oh, they show a beauty that far exceeds the gaudy, self-serving lives that are idolized by so much of the world.  

I would give them a million roses if I could, but I hope that the one rose they received yesterday reminds them that they are the true beauties of this world…and they show it every day without saying a word.

Skittles and A Super Bowl Ring

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

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

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

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

You can probably guess what it was.  

A very BIG container of yummy Skittles!!

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

How I laughed when I saw these pictures!

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

What a very nice thing for them to do!

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

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

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

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

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

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

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

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

“Yeah!!” he eagerly answered.

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

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

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

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

Kindness is also shown by a smile.

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

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

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

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

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

Pass the Skittles, Aaron!

Up and Down With Uncle Aaron

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

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

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

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

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

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

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

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

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

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

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

Pick your battles, right?

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

Within three days, Aaron had taken back the bear.

Up and down.

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

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

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

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

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

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

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

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

Ryker, the offending nephew.  

The infiltration of the nephew is not acceptable to Aaron.  

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

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

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

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

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

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

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

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

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

Uncle Aaron, The Nephew, and The Bear

Our crowd from Texas all arrived safely in three different stages on Monday night.  What a relief to have them all here at last!

Except relief is not the word that Aaron would use to describe his feelings about this situation.  

His word choice would have been “dread.”  Dread mixed in with a little anger.

But Aaron reacts this way to any situation that threatens to up-end his ordered, predictable world.

Even on the day the family was to arrive, Aaron was still letting us know that he did not want to be Uncle Aaron and he did not want to have a nephew. 

He was asleep when the last travelers arrived at 10:30, with Ryker (the nephew) in tow.  Poor little Ryker was tired of traveling and scared of all the sudden new surroundings until he was able to finally stretch his legs and do some exploring.  Then there was no stopping him!

Ryker was awake early the next morning, and so was Aaron.  Aaron walked in the room where Ryker was staying.  Andrea had just changed his diaper.  I saw Aaron’s eyes dart to Ryker but then quickly look away.

“There’s Ryker, Aaron,” I softly said.

But Aaron was very nervous, and I knew not to push.  Aaron focused solely on Andrea.  He began talking about and showing her the box for his new Batman game.  He was in his comfort zone, and it was best to leave him there.

Andrea and I went downstairs with Ryker, where Aaron soon followed, still focusing only on Andrea as he talked about games and movies…anything but “The Nephew.”  Ryker just looked at Aaron, certainly intrigued, but Aaron still refused to acknowledge his presence.

After some time, Aaron thumped back up two flights of stairs to his bedroom.  Soon we heard him coming down again.  I thought that Aaron would have a new game box to show Andrea.  

But no.  Instead, he was carrying a stuffed bear.

This wasn’t just any stuffed bear.  34 years ago, while we lived in Germany, our third child was born…Andrew.  Aaron was five years old, and he did not welcome his tiny little brother into the world.  Instead, he was uncomfortable around baby Andrew and kept his sullen distance when they visited us in the hospital.  We attributed it to normal adjustments that many children have with a new sibling.  

When we brought Andrew home from the hospital, we were concerned about how Aaron would react to his brother actually living with us.  As soon as we walked inside, Aaron looked at us and then ran back to his room.  Soon he returned carrying his favorite stuffed bear, given to him when he was born. 

“Here,” he said as he held his bear out to us.  “Andrew can have this.”

That was his way of accepting his new brother.  And for the rest of his years at home, that bear was Andrew’s bear. 

Andrew grew up and moved away.  The bear was in his closet.  One day, Aaron saw the bear and asked if he could have it.  Andrew, of course, said yes.  So, for all these years that special bear has been Aaron’s bear again.

Over this past year we have watched 39-year-old Uncle Aaron exhibit the same unaccepting behavior toward his new baby nephew as he had shown toward his new brother.  

But then…

Aaron held the bear out toward Ryker.

“Here,” he said to Andrea, “Ryker can have this.”

I was blown away as my mind wrapped around the significance of this moment.

I was taken back all those years ago to our military quarters in Germany, little Aaron handing his favorite bear to Andrew.  And now handing that very significant bear to The Nephew.  To Ryker.

I could never have orchestrated a sweeter, more meaningful way for Aaron to show his acceptance of Ryker.

Oh, thank you Lord!  

And thanks to all of you have prayed over this past year for Aaron to accept and love Ryker.  All of you have a part in the miracle we have seen over the past three days.  

Aaron has been sharing food and toys and stuffed animals with his nephew. 

But nothing he shares can surpass that first thing he shared…the little brown stuffed bear with such a story to tell of love and acceptance.

Good in My Nazareth?

Tis the season for the Christmas story to be at the forefront of people’s lives.  And in the forefront of that story is the little town of Nazareth.  Gabriel was sent there to tell Mary that she was the one whom God had called to bear and give birth to His Son, Jesus.  

Nazareth…a very small dusty town.  Pretty much a place one would pass by rather than linger there for any reason other than to perhaps get a drink of water.  Larger, more exciting towns were nearby.  

Years later, when Jesus was calling His disciples, Philip went to find Nathanael.  He told Nathanael that they had found the One foretold by Moses…Jesus, of Nazareth.

Nathanael’s response?

“Can any good thing come out of Nazareth?”

That seems to be the reputation of Nazareth in a nutshell.

But Mary lived there, and her betrothed, Joseph.  Two unknown people in an unknown town…a town nowhere mentioned in the Old Testament or early Jewish literature.  

But the angel said that Mary had found favor with God.

How?  How do you make a name for yourself in Nazareth, of all places?

But that’s just it.  Mary didn’t set about to be noticed by God.  She wasn’t trying to do great things.  She simply lived her life for the glory of God in every mundane daily task that was a natural part of living in Nazareth.

Less than an hour ago I stood by Aaron as he had his third seizure in four hours.  This one was very hard.  My heart hurts.

Afterward, I sat by our Christmas tree and pondered this life that God has given me.  In many ways, I can say that this is my Nazareth.

I have had a taste of the “other” side of life.  Awards, travel, lots of ministry, etc., etc.  

But as time has gone by, my world has narrowed a lot.  The life of a long-term caregiving parent is not exciting.  It is not a life that others point to as they wish they had MY life.  

And all of my fellow caregiving friends know “the look.”  It’s the look that crosses a person’s face when they ask what you do or if you can join in this or that, and you tell them your situation.  So often there is no real understanding.  Sympathy, perhaps.  Compassion, sometimes.

But it’s like they don’t know what to do with you.  

Kind of like being from Nazareth.

But God has a purpose for each of His children in His kingdom.  Even us Nazareth folk.

For God says that He works all things for good in the lives of His followers.  

I have good purpose, right here in my Nazareth.

For every piece of wet bedding washed, every meal cooked, every bathroom cleaned, every doctor appointment, favorite show watched and game played, every story listened to for the 500th time – is just what God has for me to do where He has put me.

He put Aaron with us.  I can look at my life with him as my ministry or as a misery.

Human nature makes us feel that we’re not really being of value unless our calendars are full of events and we are free to come and go as we choose our opportunities.  And this is wonderful for many people.

But for my other Nazareth people…whatever your Nazareth is…know that there ARE good things that come out of Nazareth.

Claim your purpose where God has placed you!

Be faithful there in the messy and the mundane.

In so doing, you are bringing delight to God…and there is no higher calling.

Even in Nazareth.

What Time?

A prominent trait of individuals with autism is a fixation on time.  Not just the current time, as in this oft-repeated conversation:

Me:  Aaron, would you like to go ahead and eat your sub for lunch?

Aaron:  Wait!

He then pushes his shirt sleeve up…WAY up, because he wears his watch halfway to his elbow…and stares at the time.

Aaron:  Not yet.

Me (knowing the answer):  Why not?

Aaron:  Because it isn’t 12:00 yet.  It’s 11:54.

But Aaron is also very concerned about ordering the timing of events in his day.  That particular interchange sounds like this.

Me:  Aaron, would you like to go to Swanson Park for a walk today?

Aaron:  Yes!  What time?

Me:  Just whenever I get done with this laundry and a couple other things.

Aaron:  So what time will that be?

Me:  I don’t know, but I’ll come get you when I’m ready.

Later, as we walk in the park:

Me:  After we finish our walk, I need to run by the house to do a few things.  Then would you like to go to Dairy Queen?  (Silly question!)

Aaron:  Yeah!!  What time?

Me:  I don’t know the exact time.  We haven’t even finished our walk yet.

Aaron:  OK.  So will it be 3:00?

Me:  I don’t know, Aaron.

Later again, as Aaron is happily chowing down on a Choco Brownie Extreme Blizzard:

Me:  For our show tonight, do you want to watch The Big Valley?

Aaron:  Yeah!!

Silence, but I’m waiting for it…and Aaron doesn’t disappoint.

Aaron:  What time?

AAAAHHHHH!!

That last part was just in my head.

Oh Aaron!  He can drive us to distraction with his emphasis on time.  And drives himself into great frustration when his timing ideas don’t match up with ours.  Or even worse, when he asks us what time something will happen, and we don’t give him a precise answer.

Did you know that between the Old and New Testaments, there was a gap of 400 years when the people of Israel did not hear directly from God?  There were no prophets, no visions, no word from God at all.

Just silence.

BUT!!!!

“BUT when the fullness of the time came, God sent forth His Son, born of a woman, born under the law.”   (Galatians 4:4)

When the time was right in God’s eyes, did He ever speak!  He sent His only Son, born of woman, to live and die in this world so that you and I could be redeemed.  

I’m a time worrier, too.  I wonder why sometimes God seems silent, or why He answers me but not in the way or in the timing I want…and am sure I need.  

But this verse in Psalm 16 has meant so much to me, especially recently as I have claimed it for a situation in our family:

“The Lord is the portion of my inheritance and my cup; You support my lot.  (Psalm 16:4)

Just as God portioned out the Promised Land to Israel, so He also gives to me what I need but only WHEN I need it…not when I THINK I need it.  

The words, ‘You support my lot’ mean that God takes care of my circumstances.  

When I allow Him to be my portion and my inheritance…I partake of Him in daily communion as I travel this road of life…I learn to trust His timing in all the matters of life that matter so much to me.  

Yes, I’m human and I get impatient and bothered but God is ever faithful and understanding of my fixation on time, much like Aaron’s.

God takes care of my circumstances!

What an absolutely amazing thought.  

Me:  What time, God?

God:  In MY time, Patty.  The fullness of time.  

And that’s really all I need to know.

Aaron’s Talking Points #15

It’s beyond time for another selection of Aaron’s funny comments and his very unique take on the world. I hope you smile and maybe even laugh. We do!

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Aaron during Skip-Bo: “Oh, Mom! Yesterday in Best Buy I didn’t look at the sign and I went in the women’s bathroom! I wondered why the Best Buy people had made the bathroom look different.” 

“Aaron! Was anyone in there?” 

“No – just Tiffany.”

 Aahhhh!!! 

“And I went ahead and used the bathroom.” 

Double Aahhhhhh!! 

I will NOT be seen with Aaron in the New Market Best Buy anytime in the near future.

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Aaron, looking at leftovers in the frig: “Mom, do we have any of that fajita thing left?” 

Me: “What fajita thing?”

 Aaron: “You know – the one I wanted to gorge on.” 

Well, Aaron, that could be anything that you’re looking at in the frig, basically.

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Aaron was showing me the box for his ridiculous genetically altered python movie. 

“And look, Mom, at how big that snake is! He’s 128 feet pounds!!!” 

Oh please, can we not start doing this? I do NOT need to add my feet to my pounds!!

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Aaron knew that I had some meatballs in the frig. When he came home today, he said, “Mom, what’s for supper? Is it some of that circle meat?” 

Must be similar to round steak!

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Aaron had a Celtic Thunder CD in the van that we were listening to. We were on number 7. Aaron always listens to every song on every CD, from the very beginning to the very end, no matter if he (or ME!!) likes the songs or not. We have quite a few Celtic Thunder CDs, but only one was in the van at the time Aaron decided to play it. However, he remembered that we have all those other CDs, so today on our way to his doctor appointment, he walked out of the house carrying all our Celtic Thunder CDs.

When we got in the van, I turned on the current CD…the one on number 7 and not nearly finished…but he promptly took it out of the player.

“Aaron!” I said, “why did you do that?”

No comment as he bent way over his CDs, reading the back of each one. And I…who am smarter than your average bear…knew exactly what he was doing. He was arranging the CDs in listening order based on the year that each CD was made, beginning with the earliest and going to the latest.

“Aaron,” I tried again. “I really liked song number 7. I wanted to keep listening to that CD.”

Still no comment as Aaron opened a CD box, took out the CD, and put it in the player. I sighed and huffed, but he took no notice.

“Aaron,” I finally asked, “how did you decide which order to use for Celtic Thunder?”

“From the years went by,” he simply answered.

He never disappoints. But I still like song number 7 on that other CD, even if it isn’t in the right order!! 😃 😃

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I was complimenting Aaron last night on the fact that he’s been happy and more compliant lately. I told him that he’s even been getting out of bed nicely on the mornings that he sleeps a little later. His reply?

“When I wake up in the morning, I expect myself to get up!”

And again, I learn from Aaron – and I laugh, too. 😁❤️

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Aaron, listening to a song as we drove home from his day group:

“Mom, are they kinda a rock team?” 😎😅🖤🎼🎶🥁

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Aaron is really, really wanting to get flowers for some of his staff.

“Mom,” he begged, “I just want to get ONE! Not the WHOLE set!”

😂🌹💐

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I took Aaron to his yearly eye exam today. God bless Aaron’s eye doctor. Next week I’ll be saying, “God bless Aaron’s dental hygienist,” but today all blessings go his eye doctor and to the staff. Oh, Aaron isn’t mean. He just has a very difficult time understanding what the doctor needs from him…..how to express what he is seeing or not seeing clearly…..opening his eyes wide…..not leaning back from every instrument that comes toward his eyes…..things like that. There was one very funny interchange, though, during the exam. You know how the doctor wants you to tell which lens helps you to see the letters on the wall the clearest.

Dr. Nelson: Aaron, is number one better? Or number two?

Aaron: Number one.

Dr. Nelson: OK. Now which is better? Number three, or number four?

Aaron: Number one.

Dr. Nelson: Let’s try again. Number three, or number four?

Aaron: The first one.

Dr. Nelson: You mean number three….here…..or number four…..here.

Aaron: Number one.

Dr. Nelson: Let’s try these. Number five, or number six.

Aaron: The first one.

Dr. Nelson: Let’s try number seven…..

Aaron: Number one.

Dr. Nelson: OK, let’s not do numbers anymore. Is this one better, or this one better?

Aaron: Number one.

HaHaHaHa!!!!!! How I wanted to belly laugh!! I do believe that number one was the winner, don’t you??!! 😎😵🤣

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Aaron just now: “Mom, you know how some people are like, half Indian? Well, is Dad half country?” Where does he come up with this stuff? How do I answer these questions? And when I laugh, he just stands there and looks at me, still waiting for the answer. Cracks me up!

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Aaron is placing his order for his weekend snack bag – a bag of snacks that he gets on Friday based on good behavior and attendance at his day group. Of course, if I was a fly on the wall at his day group, his snack bag might contain fewer goodies. 🤨

Anyway, this morning he wanted to be sure once again that I was clear about one particular request.

“Mom, can I have those circle Reese’s with a wrapper?” 😍

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Aaron and I were in the waiting room at the eye doctor yesterday when in walked a nun dressed in her habit from head to toe. Now some of you remember that Aaron has had conversations with us about nuns he sees when he is out with his day group, like the nun he saw at the mall. We finally figured out that the person he was describing was a nun, so we asked him if she was alone. “No,” Aaron answered. “She had her children with her.” Ummmm…..OK.

So yesterday I didn’t know what Aaron might say about this nun as she stood there at the front desk checking in. I was wondering how long I could hold my breath and was hoping that tickling Aaron’s back would make him keep his head down so he wouldn’t notice her. But he looked up and saw her, and just stared at her as she finished checking in and then walked over to the bathroom.

His only comment: “Mom, she’s wearing a hood. She must work for the church!”

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Aaron is stronger today, feeling better and happy to be talking more. Last night I cleaned his outer ears with a Q-tip, so this morning he had to tell me something. “Mom! Last night you made my throat tickle when you used that ear stick.” I hope I’m nearby if he tries telling one of his doctors about this home remedy.

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Aaron couldn’t go with me to pick out a Father’s Day card for Gary, so I got one that has a Superman logo on the front.

“Superman?” Aaron asked. “That’s weird.”

 I told him it wasn’t weird and to sign the card, which he did, very formally as usual. The first signature was “fancy,” as he says, and the second one was “regular.” Then I told him to put the word “Dad” on the envelope, but of course that word is too regular, so he put Gary Moore on the envelope.

 We told Gary to come upstairs and while he walked up the stairs, I coached Aaron on what to say when he handed Gary the card. “Aaron, say ‘Happy Father’s Day!’ ” I told him. “Say Happy Father’s Day?” Aaron asked. “That’s weird!” So of course, Aaron just handed Gary the card with a very sentimental, “Here!”

 Then he proceeded to point out that he had written Gary Moore on the envelope, all the while laughing at his little joke. So, I’ll say Happy Father’s Day, Gary. If I only had this past week on which to base what kind of Dad you are, it would be enough to say that you are a great Dad. And that’s not weird. ♥

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Aaron woke up this morning to find a little blood on his pillow, so he thinks he had a bloody nose. “Mom, when I woke up, I was sleeping on top of my nose!” That would explain it.

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Aaron wasn’t happy with his weight at his doctor visit last week, so today he came home and said, “I don’t want to be at — so I bought some Twizzlers and checked the back for the fatness and the sugar.”

 He held up a bag and so I asked if that was the bag he bought. “No, this is the second bag. I already ate the first one.”

 Let’s talk about portion control next.

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Today Aaron had an appointment with his Epileptologist. I call it Doctor Visit, Take Two.

Aaron was very drowsy after taking his morning meds. In fact, so drowsy that I told him as we entered the exam room to just sit in the chair, not up on the exam table. But NOOOO, Aaron thinks that one MUST sit on the exam table when in the exam room. Silly Mom.

The nurse had come in the room and had begun asking me questions about Aaron’s meds and dosages. Aaron, in the meantime, stood facing the exam table.

Nurse: So Aaron is on ——-?

Me: Yes. Aaron, do not climb on the table. Turn and SIT on it.

Nurse: And what is his dosage of ——-?

Me: 200 mg. in the morning and 200 mg. at night. Aaron, why are you climbing on the table? Turn and SIT on it.

But it was too late. Aaron was now on the exam table on all fours, his rear end where his face should be, with nowhere to go on that small, narrow table. More like a dog at the vet.

Nurse: (Unaffected) And is he taking ——-?

Me: Yes. Aaron, be careful! What are you doing?!

Aaron was now slowly turning around, still on all fours, and crumpling the paper that covered the table.

Nurse: Aaron is also taking ——-?

Me: Yes. 1,000 mg. in the morning and 2,000 mg. at night. Aaron, for crying out loud, would you please just sit down the right way?!

Nurse: (Still unaffected) So he’s still taking ——-?

Me: Yes, 1 mg. at night.

Aaron was now sideways on the table, shoes kicked off, mission almost accomplished. And I was laughing, really laughing, at this whole scene……which Aaron thought was pretty cool, because at least silly mom wasn’t upset in a mad way.

  Aaron then got fully turned around so now his face was finally where his rear had been, and he decided to sit Indian style on the exam table.

Nurse: Any anxiety?

Me: Aaron or ME???!!!

Nurse finally smiled as she left the room.

WAIT!! No exam??!!

🤣

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‘Til next time. Have a very Happy and Thankful Thanksgiving!

Do You Know Me?

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

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

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

“Do you know me?” he asked her.  

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

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

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

Oh, Aaron.

So unabashedly himself.  

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

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

“Do you know me?” he asked.

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

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

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

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

To REALLY know him.

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

We smile at the quirky side of Aaron.

And to enjoy the things that Aaron enjoys.

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

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

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

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

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

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

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

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

It’s heartbreaking to see his struggles.  

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

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

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

“Do you know me?” he asks again.

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

And then guilt.

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

But there is another thing we know.  

We know that God designed Aaron to be truly unique.  

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

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

“Do you know me?” Aaron asks again.

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

The Bitter Root

Several years ago, I had an experience with a small weed in one of my front yard flower beds. 

 I had become so busy with my other gardening that I had put off the task of pulling that little weed.  It didn’t seem like such a big deal. The outward growth, though, hid what was happening under the ground, out of sight.

 Here is what I wrote:

One hot day as I worked among my flowers, I looked down and saw that this little weed had grown significantly. Still, it wasn’t huge but it sure was larger than I had noticed before. Silly me, I thought. Why have I been waiting to pull this once-little weed? I just need to get rid of it now, I reasoned. I reached down and gave the weed a pull, and nothing happened. I pulled a bit harder, and still the weed didn’t budge. I gripped harder on the small growth, gave a firmer yank, and still it sat firm in its place in the dirt. This small, harmless weed was certainly being stubborn! It wasn’t letting go of its foothold very easily at all! I was so deceived by the small growth that I could see that I was in turn shocked by its apparently deep growth in the soil. I once again got a firmer hold, jiggled the weed back and forth, pulled with all my might and finally out came the root. What a surprise! The root was very long – much longer in proportion to the rest of the plant. While I had procrastinated about getting rid of the little weed or argued with myself about how harmless the little weed was, this small weed was growing a deep root system that could have damaged or killed my pretty Coreopsis. There was no excuse for my neglect – a wise gardener knows better.

Sometimes I let attitudes fester in my heart…attitudes that are, quite frankly, sin.  It’s easy to say, “Well, now, you have every right to feel that way.  Don’t be so hard on yourself.”

And every time I give myself that little pep talk, I am letting that root grow deeper and deeper in my life until it’s not so little anymore.

I have been keenly aware of this fact as Gary and I care for Aaron.  Usually after a stressful period, often involving Aaron’s anger, we find ourselves talking together as we try to understand him and handle his issues in the right way.  So often, solutions are hard to come by.  The effects of living long-term with him spill over into every area of our lives.  We go back 17 years to the time we were making decisions about his future.  

Did we make the right choices?  We were headed in one direction and the doors closed.  Or did they?  

I am constantly reminding myself that all those years ago we were seeking God’s will and we were desiring to walk in that path of God’s choosing for us and for Aaron.  I must consciously trust God today with our past decisions…decisions that touch us in ways today that we never dreamed.

The impact of having Aaron with us now affects our “golden years” in so many unforeseen ways.  We know that future decisions will be upon us some day, but there is a bigger issue for me right now.

That issue is bitterness.  How easy it is to find ourselves saying, “If it wasn’t for Aaron, we could do this or that, go here or there, etc., etc., etc.”  

And soon my eyes are on the hindrances of life with Aaron rather than the joy of being in God’s will…of doing His work within the walls of our home…of loving Aaron and caring for him.

We are physical creatures.  We get tired.  We get discouraged.  

And sadly, we compare ourselves to others in those vulnerable moments when we’re scrolling through social media or having conversations.

Before I know it, the bitter root is taking deeper root in my heart.  And while I understand that my feelings are normal, I also know that I cannot let myself perch there.  

I must not settle for a life of bitterness.

These verses spoke to me so deeply this morning:

“O Lord, lead me in Your righteousness because of my foes; make Your way straight before me.”   (Psalm 5:8)

My foes…my enemies…are those attitudes within me that contradict what God says is right.  A big one is this issue of bitterness over the result of God’s past leading.  

We trusted Him then to put us on the right path, and so we can trust Him now to provide all we need to face the results of walking on that path.

I need God’s leading and His righteousness to overcome that bitter root that seeks to take hold.  Here is the result of trusting Him:

“Let all who take refuge in You be glad; let them ever sing for joy; and may You shelter them, that those who love Your name may exult in You.”  (Psalm 5:11)

Paul told the believers in Ephesus that through the power of the Holy Spirit, they could be rooted and grounded in love.  

Not rooted in bitterness but rooted in love…the love of Christ seen in their lives.

I must stop and check where I am allowing my roots to grow.  We all do, right?  We have so many hurts in life…so many stresses that pile up around us.  

O Lord, lead me in Your righteousness.  Do not allow me to lead myself into bitterness.  

I love this old hymn.  The lyrics speak well to each of us, wherever we are in our life of following Christ.

He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me. 

Refrain:
He leadeth me, He leadeth me,
By His own hand He leadeth me;
His faithful foll’wer I would be,
For by His hand He leadeth me. 

Sometimes ’mid scenes of deepest gloom,
Sometimes where Eden’s bowers bloom,
By waters still, o’er troubled sea,
Still ’tis His hand that leadeth me. 

Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me. 

And when my task on earth is done,
When by Thy grace the vict’ry’s won,
E’en death’s cold wave I will not flee,
Since God through Jordan leadeth me. 

(Joseph H. Gilmore)