Category: Adult Autism

A Big Small Kindness

We were on our way to our daughter and son-in-law’s house one recent evening.  Andrea is struggling with pregnancy nausea.  I asked her if there was something that sounded good to her that we could pick up for supper.  She thought a Burger King Whopper like she had successfully eaten a couple days earlier would work.  

Aaron was going with us and was super excited at Andrea’s choice because a whopper always sounds great to him.  Including him in the supper plans was Aaron’s idea of a perfect plan!  

We went inside to pick up Andrea and Kyle’s order and to place our own.  Aaron was beyond excited, rubbing his hands together and rapidly placing his order before the attendant even had time to ask if he could help us.  

Now, in this moment I can gauge the mindset of workers in restaurants or stores as they encounter an exuberant Aaron.  Some are wary and curious about Aaron, unsure of how to interact with such unusual behavior from an almost 40-year-old balding grown man.  Others are calm and very friendly, with understanding exuding from their demeanor.

This young man behind the counter was the latter.  He was completely relaxed with Aaron, smiling and engaging him in friendly banter.  Aaron recognizes this attitude as well, though he could never sit down and explain it to us.  He just knew that this person was being nice to him, and he reacted with even more talking as he bent over and rubbed his hands together rapidly.  Someday I would not be too surprised to see smoke rising from his hands!

Then Aaron saw the paper Burger King crowns laying on the counter.

“Mom, can I get a crown for Ryker?” he loudly asked.

I said yes as I glanced at the worker.  

“Of course you can,” the young man happily said.  

“Can I have one, too?” Aaron asked.

“You bet!” our new friend replied.

Aaron placed the crown on his head.  Of course, it was too small.

“Here,” the young man said, “let me adjust that for you.”

He reached over the counter, took the crown, made it bigger and then placed it back on Aaron’s head.  

By this time, Aaron was doing his little happy hop, and I thought the kind worker might just join him.

Here was this guy with skull tattoos all up and down his arms, showing love to our Aaron, and I wanted to hug him, skulls and all.

He filled Andrea’s order for a slushy drink.  Aaron’s big eyes lit on that, and he wanted one as well.  I agreed, so our happy worker filled a cup for Aaron.

“Put your card away,” he said as I took out my debit card.  

He wouldn’t hear of me paying for Aaron’s drink.  

I looked into the eyes of our skull tattooed, rather rough looking worker, and saw kindness.

“You have a very kind heart,” I told him.  “Thank you so much.”

“Well, I try,” he replied.

Kindness certainly comes in all shapes, sizes and forms, doesn’t it? 

Aaron pretty much makes an impression everywhere he goes.  But so do those who reach out to him with love and acceptance.  Those people touch our lives more than they know.  

I am so grateful for the love these kind ones share with us as they interact with Aaron.  It’s a love that grows both in our hearts and with others.  

I have experienced great love shown to Aaron from some of the most surprising people.  Some of our Meals on Wheels clients, for instance, live in very difficult circumstances yet they show Aaron a sweet love that is beautiful to see every week.  

Our skull tattooed Burger King worker is not one who would necessarily be the person I would have picked to be such a blessing to us on that day, but he certainly was.  

It’s a huge reminder to me to not assume a person will behave in a certain way based on their looks.  

Sometimes those who may seem like the least according to the world’s standards end up being the ones who really do the most in the ways that count the most.

There’s no such thing as a small kindness in God’s eyes.  He sees each one as big.

And I’m so thankful for those big, small kindnesses in our life with Aaron!

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!

Lean On Me, Aaron

Yesterday Aaron and I went to his annual PCSP meeting.  How many years have we had these meetings?  More than I can nearly remember.  

His case manager and I decided several years ago to hold our meeting at one of Aaron’s favorite restaurants, Carlos O’Kelly’s.  Aaron really doesn’t like meetings that discuss him unless we’re letting him do all the talking about really important stuff.  You know – matters like whether Pluto is a planet or not, what solar flares are, and are black holes really sucking in stars?!  But mulling over matters of his likes and dislikes, what he is or is not allowed to do at his day group, what his goals are, and so on and so forth…well, Aaron would rather leave the room and find someone who IS wanting to hear him talk about planets, flares, and black holes.  But put a plate of enchiladas, chips and salsa in front of him and he’ll endure our needless talk.

Aaron had gotten out of bed super early the past two mornings.  Space videos on YouTube were calling to him, I guess.  As we sat in our booth munching on chips and salsa, he started leaning and leaning until finally he was resting against me like a little child.  

I eased him over and he sat straight for a couple minutes, but then he began leaning into me again.  I knew that he was sleepy from his very early mornings and from his meds, but still I kept propping him up so he could eat and participate in the meeting if needed.

Later, as I drove us home, I looked over at him sleeping soundly in his seat.

  

He is sometimes showing that age is creeping up on him.  He even seems a little feeble at times, like he did as he leaned on me during lunch.  I know that seizures are taking a toll.  He has memory loss, tremors, drooling sometimes, and other effects of both seizures and medicines.  

My heart is stirred with so much love for him.  So much concern for his life now, and for what the future will hold for him.

Yet there are those other moments, too…more and more, it seems.  Moments when Aaron is frustrated when things are not going his way at his time.  He is becoming more impatient with waiting, more set in his routine, and more expressive when those frustrations mount.

Therefore, Gary and I are finding ourselves more stretched on some days.  Our own frustrations mount along with Aaron’s.  Stress seeps through every crack in our strong armor.

I look at Aaron leaning on me, and I know that he needs me when he is struggling, both physically and emotionally.  His reactions are often beyond his control.  Sometimes that fact is hard to remember.

So, who do I lean upon?  

God.

Yes, Gary and I support each other.  I have amazing friends who walk a similar journey to ours.  I have great family on both sides.

But it is God Who leans down to me as He did the other night and fills me with deep peace even as the storm swirls around me…Who understands my struggles…Who speaks comfort to me…Who assures me with these words:

“Trust in the Lord and do good; dwell in the land and cultivate (feed on) faithfulness.”   (Psalm 37:3)

I can feed on so many things like anger, comparisons to others, resentment…the list goes on.  

Or I can obey God and lean into Him.  He understands my need.  And I must understand my need to trust Him and do good.

To feed on faithfulness even when I just want to walk away.

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

“Commit your way to the Lord, trust also in Him and He will do it.”  (Psalm 37:5)

Commit.  Lay on God’s shoulders the heavy burden.  

He is strong enough for all my burdens and He is there for me to lean upon when I am tired and done.

And oh, I cannot express enough about the grace that God gives me to continue putting one foot in front of the other, day after day with Aaron.

It’s not one bit about how strong I am or that God gave Aaron to such an amazing parent.

But it IS all about how God meets me in my most down moments with His sweet peace and His words that speak such joy and comfort to me.

And as I learn to lean on God, I can be there for Aaron when he needs to lean on me. 

God holds me up so that I can do the same for Aaron.  

That’s even more amazing than all the black holes in the universe!

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.

Aaron and The Violinist

A couple months ago, Aaron found a CD in our van that he had not listened to before.  I saw that it was an instrumental CD produced by Chelley Graves.  Chelley is an accomplished violinist who taught our daughter violin for quite a few years. 

Now, Aaron only likes to listen to music that has people singing. Instrumental music is not his interest. He will even skip songs on his CD’s that have no singing, which is very telling since Aaron goes from #1 to the last song without ever skipping a song because one does NOT skip numbers. 

He popped the CD in and sat back to listen as he examined the CD case. It didn’t take long for understanding to sink in.

Aaron: Mom, doesn’t Chelley sing?! (He pronounced her name with the hard CH sound, as in check)

Me: No, Chelley (soft CH) is a violinist. She doesn’t sing on this CD.

I figured that was the end of listening to this CD. But no, Aaron kept listening to song #1, #2, #3, #4. Since you’re not Aaron, I don’t need to keep counting but you get the picture.

I was very pleasantly surprised!

The next morning, as we left the house for his day group, Aaron pushed the rewind button, and we went from #8 all the way down to #1. He wanted to listen to the whole CD again!!

This was AMAZING for Aaron on so many levels!!!!!

This was AMAZING for me on so many levels!!!! 

No more wobbly voiced Elvis, either!!!!

Chelley’s beautiful music was filling our van and making us both very happy!

Aaron was intrigued with the fact that I know Chelley.  One day he told me that he wanted to send her a card to tell her that he liked her music.  I messaged Chelley for her address and Aaron wrote her these precious words.

And then a few days later, Chelley messaged Aaron.  I printed her message and handed it to Aaron.  

I wondered how his face could hold his enormous smile.  

Aaron placed Chelley’s message on his bed with his collection of special items that he carefully arranges on his bed every night, surrounding him while he reads and listens to music before he goes to sleep.  Her letter is also on Aaron’s desk every day, a testament to how special it is for him to be acknowledged.

Chelley has recently been playing her violin at an Italian restaurant in our city one or two nights a week.  So, last night Gary and I took Aaron to this restaurant as a special treat, but also for a very fun surprise.

Chelley knew we were coming.  As we sat in our booth, she came to our table and spoke to Aaron.  He was puzzled at first but when I told him who she was, there was that huge smile again. He told her that he liked her music, and of course then he had to show her his sticker book that he had brought with him. Chelley was so gracious and kind.  

All during our dinner, he would look over at her as he listened to her play so beautifully, and his happiness was once again on his face and in his eyes. 

 

Kindness shown to Aaron means the world to us.  So does the opportunity for Aaron to show kindness to others as he did to Chelley when he wrote her that note.  

We came full circle in a sense, all of us sharing in the joy that Aaron brings in his own unique and uninhibited way.

And here’s hoping for less Elvis and more Chelley!  

Cue The Music, Aaron…Or Not

Aaron and I were hurrying out the door a couple mornings ago so I could take him to Paradigm, his day group.  I kept feeling like we were forgetting something.  We were three miles from the house when I remembered what we forgot.

Aaron’s wallet!  

He absolutely loves his almost daily excursion to Quik Trip, where with his seven dollars he has his pick of foods…mostly of the junk variety.  Forgetting his wallet would not do!  I could have given Aaron some money, but all I had was a $20 bill, and believe me when I say that Aaron would have spent $19.99 on that junk variety food.

I reassured a panicked Aaron that we would go back to get the wallet as I headed for the next exit.  He was very relieved.

Immediately he reached over and turned off the music that was playing.  I knew why he did that, but just to test my theory…or more like a confirmed fact based on years of solid experience…I slyly reached down after a few seconds and turned on the music.

He didn’t miss a beat and neither did Whitney Houston as his arm shot out and pushed that off button once more.

“I’ll turn the music back on after we get my wallet,” he informed me, not knowing that I could have told him that about himself. 

This little episode is just one of the many ways that autism affects Aaron’s life.  He lives by a strict set of rules that sometimes only he understands but that we must obey if his life…and therefore, ours…is to be happy.

He does this same thing as we go to Meals on Wheels every Thursday.  He won’t play his music until we have picked up our food at the Senior Center and are actually beginning our route.

The wallet episode may have been a different situation, but the same rule applies.  Our diversion to go back home for his wallet had interrupted our trip to Paradigm.  This interruption was not a part of the actual drive.  Since his music is to be played on the actual drive, that music must not be played on the non-actual drive.

Are you following?

If you lived with Aaron, you better be!

It’s a matter of principle with Aaron.  

He follows this principle when we are watching a program.  Aaron will have his snack ready.  The bag or jar will be open.  The plate of food will be placed on his ottoman or his lap.  His napkins are nearby in their holder and his multiple pieces of silverware are ready to go.  His drink and straw are within easy reach.

But nothing is touched until the first scene of the show…and most critical, the opening credits…are completed and the real honest-to-goodness show has begun.

I have sat nervously by as his ice cream started melting before he will pick up his spoon and start to eat.

It does no good for me to try to make Aaron hurry up and eat, or turn his music back on, or change any other scenario of his life in which this principle applies.

Not even my deep sighing has any effect on Aaron.  He probably just thinks Mom is old and weird.

I love seeing these intricacies of the autistic mind that Aaron has.  Even when his internal rules drive us crazy, they are still very fascinating to observe.  And understanding those rules and allowing them when we can, makes Aaron’s life… and ours…much easier to navigate.

He not only follows the beat of a different drummer, but he also tells the drummer when he can beat his drum and when he can’t!  

Sticker Shock

Last week in Walmart, Aaron was excited to show me a sticker book he had found.  He wanted to give it to Ryker, his nephew, and if you know the history there then you know that this was a very sweet gesture.  But I told Aaron the sticker book was way too advanced for Ryker but added that I thought he should try to do it.

Now Aaron isn’t very keen on most craft-type projects.  As I showed him how you match the lettered and numbered stickers to the spaces on each picture, he became more interested.  So, we bought the book and home we went.

To my great surprise, the first time that Aaron and I worked on the first dog picture, he was hooked.  He absolutely loves finding the correct sticker and matching it to the right place on the picture.  Aaron is a little shaky because of his seizures and seizure meds, but he is really doing great with putting the pieces in each space as carefully as he can.  After I sat with him for that one time, he has finished each picture mostly on his own with only a little help from me here and there. 

He is SO excited about this accomplishment!  He wanted me to take a picture to send to everyone.

Aaron is very happy with this sticker book and with how well he is doing with it.  It’s great fun to see.  And he wants everyone else to see as well!

He took it to his Epilepsy doctor, who was so nice to take the time to let Aaron show it to him.  

His office staff and the nurse were also kind enough to look at it and let Aaron explain all about the stickers.

Aaron took it with him, along with a new cat sticker book we bought, as we went to visit our friend Speedy for his birthday.  He showed them all about it and Speedy’s mom ordered him some right there on the spot.  Aaron was thrilled!

That morning as I was having my quiet time, I heard Aaron rolling his chair up the hallway.  In the room he came, sitting in the chair as he guided it with his feet, and rolled up to the bed.  He proceeded to open his sticker book and get to work.  

“Um, Aaron,” I said, “this is my quiet time, so you need to run on and do your stickers in your room.”

“But Mom,” he replied, “I can have my quiet time here, too.  I can be quiet!”

Aaron being quiet is a miracle that God has not granted yet.  

Off he rolled, back to his room.

I was out for a bit yesterday morning and when I drove back to the house, there was Aaron sitting at the end of our neighbor’s driveway…talking, of course, and showing our two very sweet neighbors his sticker books.

Today he showed all our Meals on Wheels clients his dog sticker book, letting one find the correct sticker and helping her put it on the right spot.  Then he took the book into Pizza Hut and worked on it while we waited on our lunch.

You might wonder why I am writing about all this.  It’s because Aaron has never really enjoyed painting or coloring or drawing or most other art projects.  He will do them reluctantly, with lots of our help, but his heart is never in it.

But this sticker book has captured his attention enough that he was willing to try it on his own.  It’s a huge victory for him and for me!

I’m as thrilled as I was when he learned his alphabet before he was 2, and taught himself cursive, and how to read and do math.  

That was so long ago, and over the years we see regression in some areas as well as frustration on Aaron’s part about what he CAN’T do.

But this sticker adventure has been a huge shot in the arm for Aaron.  He is delighted with himself, and he is so happy that he has something he can share with others…something that HE did on his own!

At this time of graduations and awards and all the pride that parents feel, it’s just sweet that we can praise Aaron for a job well done and see the joy on his face.  

And then to see the understanding and the shared excitement that others share with Aaron is just the cherry on top.  

It may “only” be stickers, but oh, it is SO much more to 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!

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.