Category: Relationships

Aaron’s Lost Order

One day last week our exterminator was coming.  Aaron’s favorite storage place is his bedroom floor, so I had reminded him to clear his floor before we left the house.  

Soon a very upset Aaron came bounding up to me.

“Mom!!” he angrily said, “I lost the order of books!!”

When I walked into his room, I saw this.

His large stack of books had taken a tumble, ruining the careful order that Aaron had put them in.

I knew not to dismiss what to us would be no big deal.  To Aaron, this mayhem was a HUGE deal.

We got the books put on his bed as I assured him that he could restore the order when he came home later that day.

This is a perfect picture of our life with Aaron, more so lately than perhaps ever before.

Aaron has a rhythm to his life that he creates.  His routines and methods are vital to his happiness.  

We know better than to discount his routines.

There is always a balance in our life with Aaron as we seek to help him manage disruptions while at the same time validating his concerns…concerns of his that can lead to serious anger outbursts from him, which in turn lead to disruptions in our life.

Sadly, Aaron isn’t concerned about the effects he has on us.  Autism often manifests itself as narcissism in Aaron and in most others that I know who struggle with this condition. 

I have always said that physical disabilities are much easier understood than behavioral ones.

For instance, we have sadness and sympathy for Aaron when he has seizures.  The interruptions in our life that seizures might cause when we must change plans are clearly understood.

But when Aaron loses the order in his life that he has created he reacts with anger that sometimes becomes rage.  Nothing we say or do at that point has much if any effect.

I know when Aaron has a seizure that I can’t tell him to just wake up and come take a walk with me.  He understandably is unable to do that.

But I must also know that when Aaron has an emotional meltdown over something that has upset him, I can’t tell him to just get over it and stop being ridiculous.  He understandably is unable to do that either.

Except most of the time, at least on paper, his behaviors at those times are not understandable to most people.

My husband and I understand what is upsetting Aaron, most of the time, better than anybody.  

But again, those behaviors of his…goodness, they take a toll on us some days.

Autism surely is full of puzzle pieces, but we don’t have a picture on the box to tell us what the finished puzzle will look like.

And the pieces keep getting rearranged as Aaron’s order from day to day gets lost in one way or another.

Sometimes, though, a sweet picture starts taking shape from all those random pieces that we’re trying to fit together.

Despite lots of anger lately about having to fit his precious nephew and niece into his life and how their being here at our house causes his order to be mostly lost, he does often pull it together and shows his caring side.

Saturday evening, I watched Ryker climb up on Aaron’s bed and hand Aaron his current favorite Golden Book.

Aaron took the book and started reading Goldilocks and The Three Bears.  

When I read that book to Ryker, I use all the voices.  Papa Bear has a deep voice.  Mama Bear has a medium voice.  Baby bear has a little baby voice.  Ryker does the same when he “reads” it to us.  

When I read it to Ryker, though, we don’t make it through the whole book in one sitting because Ryker is soon off and running to his next adventure.

So, there was Aaron propped up in bed with Ryker kneeling on the bed nearby staring at him.  Aaron began to read Goldilocks and The Three Bears.

Except Aaron read the story with no inflection in his voice…no deep voice or medium voice or baby voice.  

No excitement.  No change in his voice when he read a question.  

Just a monotone monologue.  It was really hilarious.

And Ryker didn’t move a muscle.

Maybe he was in shock.  I have no idea.

But for the first time that I have seen at our house, Ryker let Aaron read the whole book.

I think Ryker senses a difference in Aaron but in his innocence, he accepts his Unkie Aaron just the way he is.

Oh, that we could all do the same!

Especially when Aaron’s life, like his stack of books, has lost its order and we think we might lose our minds.

Ryker let Aaron finish reading his book.

Sometimes we need to let Aaron finish his book with us, too…to try to understand him as we listen to his anger and his words.

To accept Aaron as he is while still trying to teach him and show him that there are other ways to manage life when he loses his order of books.

Uncie Aaron…His Buddy and His Burden

Time waits on no man, Chaucer said.  Time waits on no child, either.  We see this clearly as we watch Ryker growing.  Pictures from a few months ago compared to now show his physical growth.  New words and speaking in sentences show his intellectual growth.  

It brings joy mixed with a dose of sadness as all parents and grandparents know very well.

Ryker and Aaron’s relationship is also growing with time.  We have seen great strides on Aaron’s part in his friendship with his little nephew.  

Sometimes Aaron sees Ryker as his buddy.

Aaron still loves giving Ryker snacks.

Screenshot

He didn’t even mind Ryker taking his favorite chair one day.

They play funny make-believe games.

Wear goofy hats of Aaron’s.

Watch cars zoom down the track.

Do chalk drawings.

Laugh at silly cartoons.

Thoroughly enjoy water balloons.

Blow dandelions.

Play music.

Occasionally share the playset.

Fly a plane.

And one of the best is when they watched our fireworks on the Fourth.

It’s just the cutest thing to see Aaron look at Ryker and say, “Ryker!  Come on!”  Then to see Ryker bolt as fast as he can on his little legs to run with Aaron up the stairs to Aaron’s room where all sorts of fun and unique gadgets await his exploration.  

And snacks that are new to Ryker!  Dots!  Red Hots!  Pistachios! 

And gum!  

So, you can see that we must monitor things closely, sometimes much to Aaron and Ryker’s frustration.

But for all the positive steps forward, Aaron still carries the burden of his autistic way of processing his world and how others impact it.

Aaron sends mixed signals to Ryker.  One minute he might be happily allowing Ryker to play with one of his cool toys and the next he might yell no to Ryker for touching another treasured item.  

Aaron can be hurtful with his words during those times, and inappropriate.  

Therefore, we must also monitor those moments as we try to foresee certain triggers that might upset Aaron.  We’re just never totally in the clear and probably never will be.

Yet, again, the progress Aaron has made truly gives us much for which to thank the Lord.  

The challenges cause us to seek God’s patience and wisdom as well.

Speaking of prayer, this has been one of the sweetest and funniest areas of Uncie Aaron and Ryker’s relationship.  

Aaron has never forgotten a silly prayer that he heard in an old Don Knott’s movie when he was a child.  He sometimes yells it out when we get ready to ask the blessing before eating.

“Rub-a-dub-dub!!  Thanks for the grub!!” 

No amount of correction on our part has kept Aaron from blurting that out sometimes.  So, you guessed it.  One day as we all sat at the table and joined hands, Aaron gleefully yelled, “Rub-a-dub-dub!”

And Ryker, without missing a beat, chirped “Rub-a-dub-dub!!”

Let’s close our eyes to pray now…and let the adults grin real big!

Every night as part of Aaron’s bedtime routine, we join hands and pray.  Ryker has joined us before.  One night I asked Ryker if he wanted to pray with us, so he scurried up on the bed, took our hands, and immediately launched into his own prayer.  We didn’t understand much of what he said, but it was precious in God’s eyes, I know, and certainly in ours.  

Andrea shared with us Ryker’s prayer one night at their house.  I had come over to help with the baby.  Laying in his bed before he went to sleep, Ryker prayed:

“Dear Jesus, dank you Gramoo.  Dank you Uncie Aaron.  Dank you donuts.”

Out of the mouths of babes.

Dear Jesus, dank you Uncie Aaron.  Even in the frustrations…the continual training that sometimes never seems to take hold…the corrections…the monitoring…

May we see the joy he also brings…the laughter…the delight at the simplest things that we often overlook.

And the huge progress he’s made in his role as Uncie Aaron.

Let’s not forget donuts!

Rub-a-dub-dub!!

Uncle Aaron and His Nephew Boy

Time for another installment in the ongoing saga of Uncle Aaron and Ryker, aka Nephew Boy.

Our exterminator, whom we’ve known for years, was at our house not long ago.  Aaron captured him…well, not literally but verbally…and decided to talk to him about Ryker.

“My nephew boy,” Aaron began and proceeded to tell George some news about Ryker.

“I have a nephew boy,” Aaron continued.  “Do you have a nephew boy?”

George did a great job of not laughing although the twitch in his mouth spoke volumes to us.  

I know why Aaron called Ryker his nephew boy.  It’s because soon our daughter will have a baby girl and so we have told Aaron that this little girl will be his niece…that a boy is a nephew, and a girl is a niece.  So, for that conversation, Ryker was Aaron’s nephew boy.

Aaron has come to accept and enjoy Ryker in a way that mostly warms our hearts.  I say mostly because there are still occasions when Aaron will get jealous at something we’re saying or doing with Ryker.

“You don’t do that with ME!” Aaron will say in a huff. 

And one day Aaron, for whatever unknown reason, got upset about his position in life.

“I don’t want to be the uncle,” he angrily asserted.

“But Aaron,” I replied, “you’re the uncle because you’re Andrea’s brother.  You can’t change that.”

“Well,” he said, “she MADE me be the uncle.  She didn’t ASK me!”

We’ve learned it’s best at these times to mostly listen and not try to reason too much with Aaron.  He eventually settles down and before long will probably be asking when Ryker is coming over again.

Of course, at this point Ryker is unaware of any animus from his Uncle Aaron.  Ryker is still at that precious innocent age when he loves everyone…and that definitely includes his Uncle Aaron.  He finds Aaron to be very fascinating and fun.  

Aaron gives Ryker lots of snacks.

Aaron lets Ryker see his really cool toys and gadgets.

Aaron’s room is the BEST place in the house!  There’s a jellyfish lamp and all sorts of squishy balls and flashlights and a frog light with glowing eyes and oh, so much more!

What’s NOT to love about Uncle Aaron?

Aaron is equally fascinated as he watches Ryker learn and grow, respond to him and talk, and eat.  Definitely eat!

Aaron gets right down on the floor with Ryker and watches him with great interest.

Ryker claps his hands when Aaron claps or yells like his Uncle Aaron when Aaron is in his room and lets out one of his funny loud sounds.

Ryker will have so much to learn about his special Uncle Aaron as the years go by.  We know there will be ups and downs with all that process, on both sides.  

It really won’t be that much longer before Ryker outgrows Aaron on every level.  I thought about that after I took a picture of Ryker and Aaron in our car.  Ryker loves sitting in the driver’s seat, turning the steering wheel and punching all the buttons.  

And there sat Aaron, always in the passenger’s seat, having fun watching Ryker play like he was driving.  

Aaron will never be in the driver’s seat.  

But one day Ryker will be.  

 I thought about how some day Ryker will perhaps be driving Aaron to Dairy Queen for his favorite Choco Extreme Blizzard or to Walmart to scour the aisles for a special treat.  

And I pray that God will use Aaron to enrich Ryker in ways that can only happen with a special person like his Uncle Aaron in his life.  

Rocks or Popcorn

Aaron loves rocks that he thinks are unusual.  Outside his day group, along the curb, are landscape rocks.  They grow much easier than grass.  Unless you have an Aaron, who eyeballs the rocks every day in search of THE one…or more than one…that he will pocket on that day.  The rocks are slowly dwindling with Aaron around, no matter how many times we tell him that he should not take…aka steal…any rocks.

These rocks have value to Aaron.  Some he thinks are diamonds or crystals even though we tell him they are not diamonds or crystals.  We tell him they are just normal rocks that need to stay in their rock home.  Still, he gathers the rocks and lately has been putting them in a large storage bag.

Tomorrow my husband is having shoulder replacement surgery.  We have kept this low key in order not to worry Aaron.  Aaron would be more worried about how this big change in our normal day would affect him instead of Gary but still, worry is worry.  

Or so we thought.

Last night, Aaron went into Gary’s study and handed Gary his bag of special rocks.

“Here, Dad,” Aaron said as he handed Gary the bag.  “I want you to take these to the hospital.”

Gary was so touched.  And he responded with such wisdom.

“Well, Aaron,” he replied, “I might be confused because of the drugs and think those rocks are candy.  If I ate one, I could break a tooth.”

Aaron thought for a second, took back the bag of rocks, and went up to his room.

Soon, he came back down.  He found Gary in the garage and handed him instead his bag of cheese popcorn that he was saving.  

“Here,” Aaron said again.  “I want you to take THIS to the hospital.”

Aaron’s love language has always been giving things to others.  In this case, Aaron won’t verbalize that he is concerned for his dad.  He probably won’t tell Gary that he hopes the surgery goes well.  He many even get frustrated during Gary’s long recovery at home because of the effects it will have on him and what he expects from Gary.

But we have a bag of cheese popcorn that speaks volumes to us of how much Aaron really does care.

And that’s as valuable to us as…as…diamond rocks!

Lessons From the Icicles

 

It’s been another very mild and very dry winter here in Kansas.  It’s felt and even looked more like spring than winter this year.  While it’s been nice not to find ourselves maneuvering over slick roads, we do need some moisture.  And boy, did we get it!  A huge storm plowed into Kansas this week, leaving us in our part of the state with at least 14 inches of beautiful snow.  We woke up to a world of glimmer as the sun shone brightly on the newly fallen snow.  The ground is encased in a sparkly white wrap, fresh and mostly untouched in our big back yard. 
 
I also noticed another result of our massive snow storm as I looked out of our upstairs windows.  There hang long rows of icicles.  They have their own unique beauty, all clear and shiny like hanging crystals.  No two seem to be the same shape as the once dripping water has frozen into various forms and sizes.  Icicles are fascinating to observe and can be very pretty when the sun is shining on them, causing them to gleam in the light.  But icicles also have another aspect.  They can be sharp and dangerous as well. 
  
This morning I saw that the icicles hanging on the front of our house were starting to drip.  They were melting because they were facing east, where the morning sun was beating down upon them.  There was not a cloud in the sky and even though the temperature was cold, the warmth of the sun was still able to reach into their icy coverings and begin the melting process. 
Soon I walked into another bedroom on the west side of our house, where the sun was not yet reaching.  There hung another long row of icicles, still firm and cold in the shadow of the morning.  The sun had not yet touched these frozen fingers of ice, so they were still solid and stiff.  They didn’t really even appear as shiny and beautiful as the icicles that were being touched by the sun.  These hanging jabs of ice seemed colder, even more harsh, than the icicles in the front that were warming in the sun.
 
These icicles reminded me of some of the lingering results of personal storms in my  life…….especially times that have involved the hurt inflicted by others.  I imagine that you have had those hurts as well.  We all experience that pain at some point in our lives.  If we’re not careful, those wounds can develop into icy slivers of bitterness in our hearts.  Where there was once the flowing warmth of relationship there is now the frozen stab of disappointment that has pierced our heart.  Sometimes the situation is private and no one knows about it but us.  Other times the hurt is very public and embarrassing, misunderstood and whispered about by others.  The results are the same, though.  The pain created by these wounds is still very intense regardless of how they occur.
 
Solomon wrote about these matters.  In Proverbs 14:10 he said, “The heart knows its own bitterness…..”  No one but us knows what is in our hearts.  We may appear to be fine and normal to others, but those icy shards of bitterness have frozen our hearts.  We dwell on the situation and rehash the hurtful words and scenarios over and over again.  Our heart knows its bitterness, so very well, and we become numb in our pain……….and numb to the other Person who also knows what is in our heart.  God knows…..and He does care very much about that chill that has encased us and frozen us. 
 
In Ephesians 4:31-32, there are several sins that God tells us to put away.  The first one listed is bitterness.  Then God says to “……be kind to one another, tender hearted, forgiving each other…..”  So how can I be kind and tender and forgiving to those that have hurt me so deeply?  How can my heart be warmed again when it is so frozen with injustice and pain?   Well, it’s not easy, but God tells us here that the first way to start is to remember that we are to forgive “……..just as God in Christ also has forgiven you.”     How can I be unforgiving when I have been SO forgiven by God?  I am forgiven……..and I must be forgiving to others. 
 
When I take this first step and realize my position in Christ, then His light will begin to thaw that immobile, cold heart of mine.  Forgiveness here carries the idea of releasing.  I need to constantly release to God the people and the situations that have so chilled my heart.  Let Him bear my pain and let Him warm my cold heart.  And if those people are still present in my life, then I am to show kindness and tenderness.  Look for ways to serve, to be kind, and to be tender hearted……..not hard hearted with a frozen heart but to be tender and loving.  It’s not easy, but God will enable and give grace to do what is the most difficult. 
 
Soon l will hear a dripping noise and realize that my once solid, icy heart is thawing out under the warmth of God’s love and His enabling.  He won’t force me to allow His light to shine in my inner being, but if I open that door and allow Him in, then the melting will begin.  Slowly but surely the damaging icicles will dissolve as I focus, not on the other person or on the pain that they have caused, but as I focus on the light of God’s forgiveness and love in my once cold heart.

 

 
Shine Your light in my heart, O God, and let the melting begin!

Big News and A Fun Fall

Time for another update!  First, the big news…news that some of you know and some don’t, so I get the joy of sharing it again.

Our daughter, Andrea, came over one day with a gift bag for us.  I was puzzled as I took out this framed picture.

Puzzlement turned to pure joy as we realized what it meant.  As Aaron says, “We’re going to have another baby!!”  We’re so happy and so thankful for God’s great blessing.  

Then several weeks later, another surprise.  We were given a pumpkin and inside…well, see for yourself.

Now Aaron tells everyone, “We’re having another baby.  My sister is having a GIRL!!  I’m scared to have a GIRL!!”  🙂 

We’ve been having a beautiful fall.  We got to introduce Ryker to the fun of jumping in leaves. 

Then Aaron wanted to lead us on a walk around our neighborhood pond.  It was really a precious time of Ryker happily following Aaron, and Aaron turning around to keep an eye on Ryker. 

 Ryker now says Aaron’s name fully and clearly.  He absolutely loves his fun Uncle Aaron.  And Aaron is responding with more interactions and smiles.  We do not take this for granted.  All of us are so very happy and thankful for the loving progress that has been made.  

Another very fun event was taking Ryker trick-or-treating in our neighborhood.  We didn’t know if he would wear his outfit, but he did, and he loved every minute of it.  Of course, this Gramoo was smiling from ear to ear at our adorable little cow!

But another precious part of the evening was that Aaron really wanted to go along.  He wore his Pharaoh costume from two years ago and was as eager as a young child.  

I wondered if anyone would question it when they saw a bearded, balding man at their door.  Thankfully, everyone was kind as could be and Aaron had so much fun. He and Ryker going trick-or-treating together was just another very sweet time.  

Aaron turned 40 this month!  He doesn’t see the significance of that at all.  It’s neat that age doesn’t mean a thing to him.  He doesn’t focus on the fact that he’s the oldest in our family and he doesn’t compare himself to his siblings in the sense of life events or accomplishments.  That’s a real blessing indeed.

I have mentioned thankfulness in this blog several times.  We truly are thankful for every blessing, for every step of progress with Aaron, and even for the steps backward that are an inevitable part of Aaron’s life.  

We are forever grateful for the love of family and for the joy of time together. Thankful, too, for friends like many of you who love and pray for us. 

 And for the certainty that God will guide us in each day and year ahead.

Uncle “Awa” Update

Once again, it is way past time for a family update.  Lack of time and often no lack of tiredness sure make it hard to write like I want.  Or like I used to long ago.  Anyway, here I am at last.

Can you tell from my title what sweet news we have about Uncle Aaron?  This past Saturday evening at supper, Ryker started pointing to Aaron and saying, “Awa.”  He did it over and over and was so happy at our reaction.  Aaron was his typical unemotional self, but Ryker didn’t care.  He kept pointing at Uncle Aaron and saying “Awa.”  And he didn’t want Aaron to leave the table.  

We could tell, though, that Aaron was pleased and later he told me that it made him happy.  He told his staff at his day group, too…a sure sign that it makes him feel special.  It was such a sweet and heartwarming moment to see Ryker saying Aaron’s name in his own precious little way.  

Aaron still likes to share with Ryker, and is playing more with him, too.  It’s mostly playing in small ways but it’s a good start and shows that Aaron is getting more comfortable with his little nephew.

Aaron claps quite often, and often those claps are ear splitting.  I’m sure he could win a clapping contest, hands down!  (Sorry.  That was corny.) Ryker watches Aaron closely and has now started copying Aaron when he claps.  First comes Aaron’s super loud claps, followed by Ryker’s little baby claps.  And then come lots of smiles from all of us.

One day Aaron let out his deep “Ho Ho Ho” laugh and Ryker suddenly copied it perfectly.  It was hilarious!

Last week we went over to Andrea and Kyle’s, stopping on the way to pick up some burgers.  Aaron saw the BK crowns on the counter and asked the worker if he could have one for Ryker.  This young man happily said yes and then offered one to Aaron.  It was another sweet gesture from Aaron to Ryker.  

Aaron still has his moments of uncertainty and jealousy, evident in the statement we hear the most when Ryker is here:  “You don’t say that to me.”  

Or:  “You don’t bounce with me.”  

And here’s one, said after I commented that Ryker is adorable:  “Do you think I’m adorable?”

We always assure Aaron of our love and call to his attention the ways that we show him that love in an adult way.  There are times we are still walking on eggs with him when Ryker is here.  Aaron does love our full attention and to share with anyone else, not just Ryker, often goes against his grain, especially if that sharing interferes with Aaron’s sacred schedule.

But all in all, we see huge improvement and it’s truly a cause for praise to the Lord as well as being sure to praise Aaron for ways that he is being nice to Ryker.

And we have one more bit of great news.  Andrea gave us this picture a couple weeks ago.

Ryker will be a big brother next May!!

We are thrilled and so very thankful!

Aaron is not quite as thrilled, but he isn’t totally against the idea, either.  He has told people that he doesn’t want Andrea to have another baby but then he tells others about the coming baby in an excited way.

Typical Aaron, up and down, depending on the moment.

Typical me and Gary, depending on the Lord for patience and wisdom, which we do not always show.  

But remembering to be thankful for every victory and every bit of good news.

Uncle Awa.  

That’s some very sweet news right there, times two!

Important Uncle Aaron

It’s been way too long since I’ve given an update on Aaron in his life role of being Uncle Aaron.  All in all, Aaron has made great progress.  But our road with Aaron is never without some bumps…or sometimes potholes!

Ryker is now 19 months old.  He is talking and showing more of his cute personality.  Aaron is fascinated with this and is showing more interest in Ryker, which we all thought he would do once Ryker had a few more months under his belt.  Aaron sees him more now as a little fellow human and not just a strange little baby. 

Aaron loves giving Ryker food or toys, and Ryker is very happy to receive them.

Yet when he tries to get Uncle Aaron’s attention to get a response from him, Aaron doesn’t know what to do, so he doesn’t do anything.

 Aaron’s lack of response to Ryker is very similar to how Aaron reacts so often to us when we get a little too close for comfort, like wanting a hug from him or a confirming verbal response.  Aaron will often back away from anything that makes him show too much emotion, especially if it’s on our terms and not his.  

Aaron likes to show Ryker his special items, like these rocks that he wanted Ryker to see.

Ryker especially loves Uncle Aaron’s room because it’s full of all sorts of cool things to touch and pick up and pull or throw…sometimes to Uncle Aaron’s delight and sometimes to Uncle Aaron’s dismay.  But it really makes Aaron feel special to see how much Ryker loves his bedroom.  

However, despite all the progress Aaron has made, this little fellow human can still sometimes make Aaron feel like he has been displaced in our home and our lives.   

“Ryker takes away my importance with Mom,” he said to a friend one day.

It’s a very telling and heart-rending statement from Aaron.  He truly has had so many adjustments to make as he learns to share his life…our lives…with this new little member of our family.  

We all assure Aaron that his place in our family has not changed one bit.  I have told him that love isn’t divided; it’s multiplied many times as God brings new people into our lives.  A friend told me that her family has talked about how our hearts grow bigger as we have more people to love.  We don’t push anyone out, we just grow bigger hearts to make room for more people to love.

Aaron listens to these words, but he still struggles with wanting to be the center of attention.  When Ryker gets more attention, then Aaron feels like Ryker is more important in our lives.  It’s a fine balancing act for all of us.

Kyle, Andrea, and Ryker came over a few days after Kyle had returned from being at sea for 3 months.  For two solid hours, they both gave as much of their full attention to Aaron as they could.  This included getting on the floor to put stickers in Aaron’s sticker book with him.  And listening to Aaron talk literally non-stop about all his interests.

Their understanding and patience with Aaron mean the world to us. 

We all see that Ryker, even at his young age, is looking at his Uncle Aaron in a way that shows he is already trying to figure out what makes him tick.  He’s trying to say Aaron’s name and the other night, after Uncle Aaron gave one of his loud claps, Ryker did the same with his sweet pudgy hands.  

We all gave each other knowing smiles.

Ryker will have a front row seat to Aaron’s world and with it will come the invaluable knowledge that special Uncle Aaron is really a very extraordinary gift from God.  

Despite the potholes in our family road, I believe Ryker will be all the richer for having his special…and important…Uncle Aaron in his life.  

And I also believe that Aaron’s heart will continue to grow and grow because of his little nephew that made him Uncle Aaron.

Automatic Uncle Aaron

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

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

Shame on Andrea, right?  

Oh, Aaron.

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

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

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

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

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

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

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

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

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

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

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

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

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

We have certainly learned that fact over this past year.

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

Uncle Aaron: Out of Order

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

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

Aaron agreed.

I was not convinced.

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

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

She was confused but made no comment, only smiled.

I was holding in a belly laugh.

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

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

His place in our family went out of order.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yesterday, Aaron walked outside with Andrea and Ryker. 

 

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

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

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

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

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