Category: Adult Autism

All Aaron!

I heard Aaron through the baby monitor early this morning.  He wasn’t having a seizure but instead was making the unmistakable sounds of getting out of bed for more than just a trip to the bathroom.  When he turns his lamp on and moves his stuff out of his desk chair…his two back scratchers and his hand towel – always, always in his desk chair…then I know that he is getting up for the day. 

UGH!!!  I knew it was way, way too early for him to be awake for the day because I had just rolled over, unable to sleep myself, and saw that it was 4:00 a.m.  I turned the monitor off, tried to sleep but couldn’t, and later just got up and began my day. 

I was sitting at my quiet time desk, Bible and study book open, when in walked Aaron.  Another UGH!  And I don’t mean to sound mean.  It’s just that Aaron will not leave me alone if he is up and about in the early morning.  Without even looking at him, I said, “Aaron, do NOT come in here right now.  It’s too early.”

Total quietness.

So I turned my chair around and there stood Aaron, some videos in hand, slightly smiling.  He looked very chipper and very fully awake, and very happy.  Much happier than Mom.  But I had to smile, too, at the cute look on his face.

“Mom, I got out of bed…” he began.

“Don’t even go there,” I said.  “I know you were up at 4:00.”

“4:11,” he flatly replied.

I had to belly laugh at that.  His precision is always so funny, even before 6:00 in the morning!

We talked and compromised, Aaron saying that he would go back to bed if I would make sure he was awake at 7:30 so that he could say goodbye to Dad before Gary left for work.  Agreed.

I thought about yesterday when Aaron and I ran into Dillon’s before I took him to his day group.  If possible, whenever we are in Dillon’s, Aaron always loves walking up to the fresh seafood and fish display.  He loudly points out the shrimp, lobster, crab legs, and anything else he finds unusual and therefore very interesting.

But yesterday there was a surprise!  Aaron was beyond excited to see two whole fish, Tilapia, laying there on ice. 

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“MOM!!!  LOOK!!” he exclaimed as he pushed his way in front of a little family also standing there.  “He’s ALL fish!!!” 

How I love the way that Aaron expresses himself…well, most of the time!

Gary and I can truly say…He’s ALL Aaron!

Like taking him to Subway over the weekend for a sub.  Subway and Great Clips are two places where, for some reason, his autism just shines.  There in Subway he told the young girl waiting on us all about Dracula since he’s getting ready to watch the old, old Dracula movie.  He asked her if she had seen the movie, did she know where Dracula lived, and how his voice “sounds like England.” 

I kept re-directing him to think of his sub and not Dracula, so he told the girl that he wanted the bread with the black dots on it.  I had told him the correct name since this bread is new to him, but he couldn’t remember that.  She looked confused, I tried to interpret, but Aaron by then was already asking her if she could show him a picture.  And on we went from there until finally we had the sub with black dots in hand and safely exited. 

Later, as he ate his black dotted sub, I asked him if he liked that new bread.

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“I like it!” he answered.  “It tastes weird.”

That’s Aaron…ALL Aaron!

His take on food is so interesting and funny.  Last night he was eating peanuts.  He is often fascinated, over and over, by the outer skin he sometimes finds. 

“I’m afraid to eat those outering parts of the peanuts,” he told me. 

And orange juice pulp – “This orange juice looks like it has worms in it!”

There he goes…ALL Aaron!

Today describing his observation at Great Clips – “You know what I noticed they do to those women?  They take them to that water place and put their HEAD in it!!” 

YIKES!!

All Aaron again!

I could go on and on sharing many insightful, funny, amazing, and embarrassing comments from Aaron.  I have tons, trust me!  So why do I share?  To make you laugh?  Cry?  Scratch your head…like we often do? 

It’s like this not-too-great picture I took of Aaron awhile back.  We had just gotten home after I picked him up from his day group.  Aaron LOVES to share with his friends, so on our drive home he was already asking about what goodies he could take the next day to share with Natalie, or Simone, or Heather, or….

He didn’t even take his coat off, but just sat down on the floor in front of the cabinet, pulled out the snack drawer, and went to work searching for his next treat to share.

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In much the same way, I want to share with all of you what a unique young man our special Aaron is.  There are so many varied parts to Aaron.  Some parts I love to share, and others I may want to hide, but they all make up who our son is. 

Autism is not the end of the world, honestly. 

Instead, it can be the beginning of another world…a quite amazing journey.

And so I want to say to each of you –

“LOOK!!  He’s ALL Aaron!”

 

What Time Is It??!!

So today I have another Chicago song rumbling around in my brain.  A couple weeks ago it was the song “Color My World” that I wrote about.

But today…today it’s the song, “Does Anybody Really Know What Time It Is?”

The chorus begins:

Does anybody really know what time it is?

            Does anybody really care?

Stop right there!!

Yes, somebody cares!!!

AARON CARES!!!

For anybody new to my blog, Aaron is our amazing adult son with autism.  And keeping the correct time is of paramount importance to him.  I mean, look at his log book that he keeps with his time to go to bed at night and the time he gets out of bed in the morning.

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And many of you still chuckle with me when I share conversations similar to this:

Aaron:  “Mom!  I woke up early this morning!  Guess what time I got up?”

Me:  “You got up at 7:00.”

Aaron:  “No!!  I got up at 6:58!!”

Aaron loves keeping his eye on the time, the PRECISE time!  Therefore, this change yesterday to Daylight Savings Time caused a huge bump in his road of exact time keeping.

And that’s why I waited until he and I were driving to Sam’s Club in the early afternoon to even casually broach the subject of another time change.  He listened and then didn’t have much response, but I’ve learned not to be fooled by his silence.  He was pondering this unwelcome news with each ticking second of his wristwatch…his wristwatch pushed way up his arm, always, for those of you who may not know that little fact.

His Sam’s food treasures kept him from dwelling too much on the time issue.  Pineapple slices…cheese cubes…dry roasted peanuts with sea salt (Aaron likes using their full description!) (and talking about what dry roasted means until Gary and I are sick of the topic of dry roasted peanuts with sea salt!)…strawberries…orange juice…and dog jerky for our big Great Dane, Jackson.

Once home and all unloaded, Aaron went out with me to the front yard.  He kindly picked up branches that had fallen in our last wind storm.  We praised him for his helpfulness, and how he was allowing Dad more time to work on our bathroom remodel.  Or as Aaron puts it – “tearing the bathroom.”  He was very proud of his job well done.

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And then it hit him.  The afternoon was moving right along.  We were going to watch our West Virginia team play Kansas at 5:00.  Aaron asked about what time the game started, which reminded him of that time issue discussed earlier, and the countdown began.

“Mom?  When do we change the time?”

“We’ll just change the clocks when we go to bed, like we always do,” I told him.

This question was asked in one form or another several times during the evening.  Then it got complicated.

It was 8:30ish when we finished watching a program.  “Maybe I should go on to bed,” Aaron said.  I suggested that we watch one more thing, and then he could call it a night.

“But when does the time change?” he asked again.

“Well, technically it changes during the night when we’re asleep, but we’ll set the clocks ahead when we go to bed,” I replied.

He was satisfied with that.  We watched one more NCIS and then it was definitely time to hit the sack.  Aaron ran down the stairs to say goodnight to Gary, remembering to have Dad change the time on his wristwatch.  We got all the bedtime routine taken care of, with Aaron pushing up his sleeve every minute or two to check the ever important time on his watch.  His eyes were darting, though, to the time on his satellite weather station.  We had told him that the time there would change automatically during the night.

Finally, he pushed up his pajama shirt sleeve, stuck his arm out for me to see, and said, “Mom, look.  It’s this time on me.”

He was struggling with having one time on his watch and another time on his weather station.  Nothing I said was helping much.

Then…THEN…the inevitable happened.  It was time for Aaron to write down his time to bed in his log book…and the time on his weather station did NOT jive with the time on his watch.

What to do??!!!

He wrote down the time displayed on the weather station.  I said goodnight.  I should have known it was not over.

Nine minutes after he went to bed, I heard his heavy footsteps coming up the hallway.  Soon there was a knock on the bathroom door.

“Mom?” he asked.  “Is it really 9:47?”

“Yes, Aaron, but during the night it will change while you’re sleeping.  Now go on to bed and don’t worry about it.”

Off he went.  I think it was 9:48.

I was starting to breathe easy, but I shouldn’t have.

More footsteps.  Another knock.

“Mom?  Is it really 10:03?”

Bless his heart.  These things are so, so urgent and of such great importance to him.  I dare not dismiss them or shrug them off or make him feel like he’s ridiculous to be so tied up in the stress of what time it really is.  Gary and I know to explain over and over, if needed…and it almost always is.  Small price to pay, really, for Aaron’s peace of mind and for ours.

All was well today.  Aaron was super excited to eat lunch at Carlos O’Kelly’s, so it appeared that all the time issues had been laid to rest last night, at the same time that Aaron finally decided to rest.

I think it was 4:43 when we were all walking in from the garage…and Aaron spied the time on the garage door opener.

“Dad!  It says 3:43!!”

And in no more than a couple seconds, maybe three, Gary had gotten that garage door opener in sync with Aaron’s watch, Aaron’s weather station, the microwave that Aaron had just watched me change, the oven, the radio…

So…

Does anybody really know what time it is?

            Does anybody really care?

Silly song!!

 

 

 

 

 

 

To Notice or To Ignore

The other night, Aaron and I were watching a DVD as he munched happily on his jar of peanuts.

“Mom!!” he suddenly exclaimed.  “What’s this on my dry roasted and salted peanuts?”

That by itself was funny, the way he says the complete name of the peanuts printed on the jar. Of course, Aaron sees nothing unusual about that at all.

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What WAS unusual, to him, was the little thing that he held up for my viewing.

“What’s what?” I asked as he held something miniscule up for me to see.

So Aaron quickly pushed back his blanket, crawled out of his chair, and stood beside me with his open palm carrying the mystery object.

Before I could tell him what “it” was, Aaron decided to first inform me of what he thought “it” was.

“It’s the cover that’s on some of the peanuts,” he told me.

This isn’t the first time that Aaron has called the thin skin on peanuts a “cover.”  It had been awhile since we had carried on this conversation.  I therefore told him once again that the “cover” was actually a thin skin that remained on some of the peanuts after they were processed.

“A skin?” he asked.  “Can I eat it?”

I assured him that he could eat it.  Later, after he had gone to bed, I found several peanut coverings on the table…ones that he had set aside, not to be eaten along with his dry roasted and salted peanuts.

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Yesterday, Aaron and I ran down to Dillon’s to buy him some lunch.  There in the entry were some little Girl Scouts selling their Girl Scout cookies.  Aaron had walked ahead of me, so as I grabbed a cart one of the girls focused on Aaron.

“Would you like to buy some cookies?” she asked him.

But Aaron had spied the salad bar.  At that moment his entire focus was on lettuce and cheese and boiled eggs and lots of ranch dressing…not on little girls with yummy cookies for sale.

Aaron completely ignored the girl’s question as he barreled in the open door and headed for the salad bar.  I was hurrying after him, because Aaron is sometimes a disaster at salad bars.  My job is to keep his fingers out of the tempting toppings, his head out from under the plastic shield, and to minimize spillage as he insists on “doing it myself!!”

But as I rushed by the sweet little scout, I definitely saw the look on her face.  She was confused by Aaron; for many reasons, I’m sure.  One of the big reasons, though, had to have been the way he completely dissed her and her question.  She was totally ignored.

I smiled at her as I scurried by, thanking her and saying no thanks, and wondering what she must have thought.

I survived the salad bar with Aaron, even as he told me I was rude for taking the tongs away from him as he spilled first some lettuce and then some cheese, and as I yanked the ranch dressing bottle from his hand before he squirted half of it on his salad.  A man was awaiting his turn, and as I turned to walk away he just smiled at me.  Aaron does have a way of becoming the center of attention no matter where we are.

I grabbed a few more items and then we went through the self check-out, me reminding Aaron over and over to stand beside me.  No wandering off to inspect other’s purchases, engage a random stranger in conversation, or sit down at a Starbuck’s table up the aisle while he ignored the worker who asked him if he wanted something.  All of the above…and more…he has done, trust me.

It was easier this time, though, because Aaron was keeping his eyes on his salad.  After I had paid for everything, he took his salad and held it in his two hands.  He walked this way out of the store, holding that salad ever so carefully, as if he was carrying a delicate Ming vase that he dared not jostle at all.

Aaron was once again so focused on his salad that when the young man who was overseeing the self check-out spoke to Aaron, Aaron once again totally ignored him.  And once again I saw that look on the employee’s face, the look that mirrored the one on the little Girl Scout.  A moment of confusion at being dismissed in such fashion.

But I also saw the young man’s face relax with understanding as I was sure he was quickly processing the reality that is Aaron.  And as I walked by, I spoke to him as I chuckled, and he broke out into a huge grin.  He got it!

How is it that Aaron can pay attention to a tiny little peanut “cover” while totally ignoring human beings who are speaking to him?

Elementary, my dear…elementary.

Autism.  Pure and not so simple.

Aaron often notices what we don’t notice, and ignores what we do notice.

When it comes to ignoring people, we can be downright embarrassed at times.  And then there are those times that it’s probably better for him to not notice certain people.

Anyway, the complexities of autism take many years and many experiences to understand.  Plus each individual is just that…an individual who is unique in how autism presents itself in their life.

That’s why it’s called a spectrum.  A “broad range of varied but related ideas or objects.”

Except Aaron is not an idea or an object.  He is a unique and varied human being, one who delights and engages and ignores and yells and frustrates and…

Well, you get the picture.  At least I hope you do!  Because then you can smile more as you enjoy the broad and varied view.

 

 

 

 

Other’s Colors

Do you remember that old song, Color My World, sung by Chicago?  I’ve always LOVED that song!  The meaning of those lyrics takes on a different hue when I think of our life with Aaron, and how he most definitely puts his own color on everything that we do. 

For instance, on Sunday after church I took Aaron with me to our local Dillon’s.  The grocery store is one of Aaron’s very favorite places!  Every aisle is full of discovery to him.  And since those discoveries involve his taste buds, he is especially eager to go along if offered the opportunity. 

Sunday was a chilly day, but not a super cold day.  However, Aaron decided that it was super cold, no matter what I said.  So he walked outside to the van with his toboggan perched goofily on his head and wearing his thick winter gloves.  I could have insisted that he take them off, but after suggesting such, he still wanted to wear his arctic garb and so I just let it go.

We went in the store, and as I headed to the pharmacy, Aaron veered off to explore the candy and snack aisle.  No surprise there!  When I veered up the same aisle to join him later, I had to laugh at the sight of him standing there examining the selection of peanuts. 

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He did not think it at all unusual to still be wearing his hat and his gloves.  Nor did he think it at all unusual to talk loudly when he saw me coming toward him. 

“Mom!!”  he bellowed.  “I’m looking at the peanuts!!”

And with that update, he proceeded to bend over to examine the jar that he thought he wanted.

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And then he had to stretch his arm out to retrieve the perfect jar.

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“See, MOM?!” he continued to bellow.  “These are lightly salted!  Is that good?”

I assured him that this jar was a great choice, and off we went to the self check-out…where he proceeded to talk to the attendant there about his lightly salted peanuts, in his commanding voice and his even more commanding presence…hat and gloves still included.

Sometimes it’s easy to be embarrassed by Aaron.  He doesn’t need the funny hat and gloves to be noticed, trust me!  So on this day, as he was even more noticed than usual, I just smiled and tried to see Aaron through fresh eyes…to relish how unusual he is…and to enjoy the moment.

The colors of that moment could have been red from my red face, and maybe my face was slightly red some of the time.  But that’s OK.  A little red doesn’t hurt me one bit! 

Another aspect of my colorful life with Aaron has been the joy of getting to know other moms of special needs children and adults.  The special bond we share is a rare treasure.  It’s very encouraging to walk the same path with others, though none of us would wish our circumstances on them.  But here we are, together on this journey, and our shared experiences make us all stronger. 

One of those friends, Joyce, has a particularly rough path as she mothers two adult sons with very significant special needs.  I truly am in awe of what she must handle on a “normal” day, much less on the kind of days she has had lately.  One of her sons had his wisdom teeth removed.  Then sickness hit the family, including Joyce and both her special sons.  Intestinal…respiratory…fevers…seizures…many, many sleepless nights. 

Her world is most certainly colored right now with the colors of poop and puke and puffy eyes, to be honest.  So on Sunday afternoon, I called her and I asked if she might want to escape for a bit…go somewhere and catch a breath of fresh air.  Change the colors a bit.

“Yes!” she said.  And a short time later, when I pulled into her driveway, she strode out to my van with a big smile on her face.  I was amazed, though knowing Joyce, I shouldn’t have been.

“Look at your smile!” I told her as she climbed in. 

“Well, I know what I want to do!” she happily declared.

I was expecting her to name a restaurant…or a park…or maybe the mall. 

“I would like to go to Dollar Tree,” she continued, “and get five vases.  Then I want to go buy some tulips and take them up to Oxford Villa.” 

And again, this woman amazed me.  Oxford Villa is a senior assisted living center where her mother used to live.  Joyce wanted to take some vases of flowers there for some of the residents who might not have anyone who loves them and brings them flowers.

Wow!! 

Joyce, I thought, needed some color in her life.  But instead, she wanted to GIVE some color to others!  I was so touched by her unselfishness!  So impacted by yet another lesson taught to me by this dear friend!

Instead of sipping a coke or coffee while eating a piece of dessert somewhere, I watched Joyce buy pretty colored vases and then examine the beautiful colors of tulips at another store.  We realized that Sunday was not the best day to deliver the flowers, though, so that job will be completed another day.  I hope I can help make that delivery!

Sometimes the best way to mix up our colors in this all-too-demanding life of parenting special needs children…or any other part of life that is draining you…is to look beyond yourself and see the needs of others.  To reach out and help carry their burden while taking your eyes off your own for awhile.

There was joy for me in watching goofy looking Aaron find just the right jar of peanuts.

There was joy for me in watching Joyce’s delight in finding just the right colorful vases for some unknown, needy seniors. 

Looking beyond ourselves causes us to see so many stunning colors that otherwise would have remained hidden. 

It’s so worth the effort, even with red cheeks or through tired eyes!

Thank you, Joyce, for your wonderful and colorful friendship!

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I’ll Be Your Friend, Part 2

I wanted to quickly share with you another sweet Aaron moment from today.

I wrote yesterday about Aaron’s sad day on Tuesday, but how that episode confirmed to him that he truly does have wonderful friends at his day group.  Here’s the link to that blog – I’ll Be Your Friend

He not only gave Natalie a card yesterday, but he also filled a baggie full of Cheez-Its for her, which he happily carried with him to Paradigm that morning.  I’m sure he was all smiles as he handed that baggie to Natalie. 

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But he also has another friend there, one who is on a very restricted diet.  Aaron has often felt sorry for her and has wished that he could give her some of the snacks that he takes to share with others. 

When Aaron took his baggie stuffed with Cheez-Its yesterday, he asked Barb if he could give some to his friend, H.  But Barb said that he couldn’t due to her strict diet.  But, Barb added, H. could probably have four or five of those crackers. 

And so today, before we left for his day group, this is what Aaron did.

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Five Cheez-Its, just for H. to enjoy all by herself.  To me, this is a picture of simple kindness.  I love that beneath all the complex layers of Aaron’s personality and of his autism, he has a heart that loves to give to others. 

Gary and I have talked occasionally over the years about how, when Aaron was young and we lived in Germany, we met with a professional.  This man talked to us about Aaron.  We were pretty offended by some of the things he said…things about how Aaron would probably never go to college, get a big job, yada yada yada. 

So O.K.  Aaron hasn’t been able to do many of the things that his peers have done.  But today, Aaron put five Cheez-Its in a little baggie for his friend, because she can only have five.  He didn’t find a cure for cancer…or put a man on Mars…or finish his fourth doctorate.

But he made his friend, H., very happy. 

And my mother’s heart is as proud of him as a mother’s heart can be. 

I’ll Be Your Friend

I pulled up to the curb in front of Aaron’s day group yesterday, a little early to pick him up at the end of his day.  Soon Aaron walked outside, heading toward the van, followed by Barb.  Barb is like Aaron’s second mom.  She is also a manager at Paradigm.  Sometimes Aaron wants Barb to come out to talk to me so that she can tell me something fun about Aaron’s day.  However, fun was not part of our conversation on this day.  I realized this right away as I looked at the tears on Aaron’s face when he sat down beside me in the van. 

“Mom!” Aaron choked out through his tears.  “Natalie got mad at me and called me…….”  And on and on he talked, his voice thick with emotion and his hands rubbing together in frustration. 

Aaron loves to give his money to his friends, especially to Natalie, and it’s sometimes a real problem.  Aaron isn’t supposed to give away his money, and Natalie isn’t supposed to ask him for money, and when they are found out, it can be touchy.  Both Aaron and Natalie have trouble controlling their emotions when things get stressful, which certainly happened yesterday.  Words spill out…tears are shed…accusations made… 

If you close your eyes, and if the voices were far younger, you would think that once again we were on the school playground trying to settle a spat between two kindergartners.  But these are two adults, who because of their special needs happen to, at times….many times….still operate as little children. 

Aaron was being very dramatic, which showed me how much his giving heart was hurting.  He had done wrong and tried to deny it.  Natalie had done wrong and got very mad at Aaron.  Both were hurt and upset.  But Aaron…his heart wants to give everything he has to his friends and when it all messes up, he feels betrayed and lonely and adrift.

“I don’t have any friends,” Aaron sadly declared as his voice broke with emotion.  “And I don’t want to come back tomorrow!!”  Just then, standing behind Barb, came the voice of Koren.  She’s Aaron’s friend, and though at times she’s hard to understand, I clearly understood this.

“I’m your friend, Aaron,” she said.  “I’ll give you a hug.”

So Barb stepped aside and Koren gave Aaron a dear, kind hug along with a few pats on his back.  It was just the sweetest thing!!

Aaron and I sorted through the story with Barb before finally pulling away from the curb.  But soon Aaron said he had left his billfold with Barb, so I quickly turned around and drove back to Paradigm.  I went inside, and when I came back out, there was Aaron leaning inside the van that held Natalie.  I was concerned!  But as I stepped closer, I heard Natalie say, “I’m still your friend, Aaron!” 

Aaron backed out of the van, his face a picture of relief…and Natalie’s face alight with a smile. 

Later Aaron, as he so often does, asked me if he could give Natalie a card the next day.  After saying he didn’t want to go to Paradigm the next day, I knew that wanting to take a card was a good sign that he was softening about going.  So I found a card for Aaron and he carefully wrote Natalie a note…a short note with a huge message.

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We all need a friend, don’t we?  One thing that amazes me at Aaron’s day group is to walk in and see the interactions of these special adults.  They love being and having friends, just as much as you and I do.  Life is so very hard for them, harder than I can even begin to imagine.  Sometimes it would be easy to feel sorry for them, sorry to the point of tears. 

But then I see them welcome Aaron when he walks in the door.  I see their smiles, their hugs, their concern for each other expressed in various ways.  I see Aaron welcomed and loved, even after having a hard day previously. 

His friends there are a picture of love and acceptance.  I don’t see jealousy or judgment or bullying.  Maybe those things happen at times.  But there, among all the varying special needs and all the medical conditions…from wheelchairs or braces…with halting speech or deaf ears…curled hands and bent bodies…I see so often the joy and the love of friendship. 

That scene has touched my heart more than I can express.  I would love to share pictures, but privacy issues won’t allow it.  So you must take my word for it, and try to imagine it yourself. 

Sometimes the most needy ones are the ones who give to each of us a picture of what we need the most. 

Genuine, unconditional friendship. 

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It’s NOT a Small World

On a recent night, as Aaron and I watched a video and he ate his tortilla chips, I looked over to see that he had perched a bowl on the ottoman in front of him.  Without even asking, I knew what that bowl was for.  Aaron has multiple bowls for multiple uses, all over the house.  Later, after our video was finished and he had cleaned up his area, I looked inside his bowl that he had brought into the kitchen.  Can you see what’s inside the bowl?

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Very, very tiny crumbs are in the bottom of that bowl.  When Aaron is eating crumbly chips, he likes to have a bowl in which he tries to ensure that the crumbs fall.  It’s easy for me to want to fuss at him for taking a whole bowl for such a few crumbs, but I know that my fussing will not change his bowl habit.  He will find a bowl to use, even if he must hide it under his blanket so that I don’t nag him about it.  Yes, he has done that.  So I just let it go…let him keep his bowl for such a seemingly silly use…and thank the Lord for my dishwasher!

Those little crumbs are a perfect picture of an aspect of Aaron that can be both humorous and maddening.  And as always, it’s up to me to decide which it will be.

So often, persons with autism fixate on what to the rest of us would be such insignificant matters.  Like those small crumbs, we would tend to just brush such matters away without a second thought .  But not Aaron!  Not at ALL Aaron!

Take the word, “of.”  Yes, “of.”

Did you realize that there is a movie entitled, “Battle:  Los Angeles?”  And that there is another movie entitled, “Battle Of Los Angeles?”

Aaron watched these two movies a few weeks ago, so Gary and I became ever so aware…once again, because the same thing happened the LAST time he watched those movies…of the importance of the word, “of.”

“Mom!” Aaron would say as he bound into the kitchen.  “I’m watching Battle:  Los Angeles!  Not the one that has the “Of!”  And off he would go in some long tale of the latest alien doings in “Battle:  Los Angeles.”

Then later:  “Mom, did you know that in Battle Of Los Angeles…not the one I’m watching right now – the one that has the ‘of’…”  And another long story would follow.

And yet again:  “Mom, in Battle of Los Angeles…the ‘of’ one…”

It was of upmost importance that he…and we…and anyone else listening…be clear on whether he was talking about the ‘of’ one or the non-‘of’ one.

Are we clear?!

Such a small matter, but huge to Aaron.

Dinner plates done right are also of utmost importance to Aaron.  A few evenings ago, at supper, Aaron had a barbecued rib on his plate.  He ate the rib, then tolerated us putting some cucumbers and ranch dip on that plate.  He ate the cucumbers and dip, then stood up and opened the cabinet door, and took out another plate.  We had asked him if he wanted another rib, and he said he did, but he didn’t say another word about what we knew was bothering him.  He would NOT put his second rib where cucumbers and dip had been, so a new plate was in order.  With his rib on a clean plate, he was happy.

Meals can be interesting with multiple plates, bowls of various sizes, two or more forks, a spoon and a knife no matter what we’re eating, and always more than one napkin.  May as well not fight it!

Life for Aaron is crammed full of these little crumbs.  Like the old children’s story of the Princess and the Pea, where the princess felt that little pea under all those mattresses, Aaron does feel the weight of all these matters that to us are very small and silly.

Therein lies the problem, though.  They are not small and silly to Aaron.  If we don’t understand that, then we will feel the weight of Aaron’s anger and frustration.  He can’t necessarily verbalize what he is feeling, or even understand it himself, but the issues are huge to him and not to be swept under a rug, so to speak.

Aaron’s life has a certain order to it, and he needs those around him to be on the same page with him.  However, most of us are not only on a different page, we’re in a whole different book!  So we’re always having to be aware of what matters most to Aaron, and when, and why, and how…if at all possible.  Notice I said that we must be aware of what matters…not even understand it…but at least to be aware.  And to place the importance on it that Aaron does.

So there may be more bowls to wash, or plates or silverware.  There may be more undue emphasis on minor little words like ‘of.’  More questions to answer, explanations to wade through, and endless stories and comparisons to endure.

But each little crumb collected in that bowl is a part of the puzzle that is Aaron.  Each sigh that escapes our lips…each roll of our eyes behind his back…each scratch of our head…is just part of the process of piecing together all that is Aaron.

Along with all that, though, is plenty of laughter and lots of smiles…and a view of our world that is anything but small.

 

My Round Guy in An Oblong World

A few weeks ago, Aaron was eating some of his favorite Skittles when he came upon an idea, one that he loves.

“Mom?” he asked.  “Can I take some of my Skittles to Paradigm to share with Shauna and Stephanie?”

Aaron loves to share things, and we love that he loves to share…within reason.  For instance, I had to say no when he wanted to share some of my jewelry a long time ago.  We have said no to him when he tried to sneak out of the house with some of his DVD’s or CD’s that he wanted to share.  But Skittles?  Sure!

So Aaron promptly went to the kitchen and grabbed two sandwich bags.  Later, I found this.

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I had to laugh.  Really?  Just three little Skittles per bag?  But for some reason, Aaron thought that three was plenty and so I let it go, hoping that Shauna and Stephanie enjoyed every little bite of their whopping three Skittles.

Days later, I bought Aaron some Good and Plenty candy for his weekend treat.  He began eating them as we watched a show that night.  I noticed, though, that he was laying aside some his candies while he ate others.  I asked him about it.

“These,” he said, pointing to the ones outside the bowl, “are not like the rest.  They’re different.”

Sure enough, the ones he put aside were different.  They were round instead of oblong.  To Aaron, round Good and Plenty candies do not belong in the same bowl as the normal, oblong Good and Plenty’s. 

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I later also found three more misfit, round candies that Aaron had placed on the shelf under the table. 

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Isn’t that interesting?  To Aaron, he just couldn’t tolerate mixing the round with the oblong.  I guarantee that if I had tried to sneak the round candies back into the bowl with the oblongs, then Aaron would have once again removed them. 

Aaron has so much to share with the world, like his Skittles that he wanted to share with his friends.  He can be bright and colorful, interesting and very funny. 

He is also quite unique, not fitting in with much of the rest of us in ways that we all notice.  Yet he IS still one of us.  He’s just a different shape, so to speak, but that doesn’t make him less than us or worse than us in any way.  Definitely not!

I share Aaron with others through this blog in order for people to understand how amazing our special ones are.  Aaron was created by God to be exactly who he is.  It’s up to me…to all of us…to understand and appreciate him.  Oh, he can be so difficult to understand sometimes.  And at times…tired times…embarrassing times…challenging times…I really falter in my appreciation of Aaron.  I’m human. 

But may I never set him aside in the sense of isolating him or shaming him.  And woe to the person who does, for this Mama Bear will roar. 

Yet Aaron sets himself apart in ways that he totally doesn’t realize.  It’s part of his charm…and part of the reason that on occasion my nerves are shot!

He can make such a spectacle of himself in public and not be one bit embarrassed.  I have many Wal-Mart stories that prove this point.  A recent one:  I’ve been working with Aaron about looking in both directions before crossing traffic.  He looks at his feet, which is not good!  I’m always telling him to look around, but still he looks at his feet.  So the other day at Wal-Mart, as we walked out of the store and were nearing the crosswalk, I saw Aaron once again looking at his feet.  “Aaron!” I sharply said.  “Look UP!”  And good old Aaron stopped abruptly in the middle of the crosswalk, with stopped cars on both sides, and looked up…at the SKY!!  I just shook my head, told Aaron to look for CARS, and didn’t dare look at the drivers to see what looks they were giving US!!  I wonder if they looked up to see what was in the sky that was so interesting?!

At a convenience store this week, Aaron ordered a pretzel on the computer in the café as I’ve taught him to do.  But Aaron still isn’t sure that the girl behind the counter actually receives his order because he hasn’t said anything to her.  After he placed his order, he leaned around the counter to the clueless attendant and loudly said, as he rubbed his hands together, “I ordered my order!!”

Some people get Aaron and some people just don’t.  She just didn’t, so she looked at him with impatience, which I saw.  But Aaron didn’t see that at all.  He thought she simply didn’t hear him, so he repeated it again…loudly, again.  “I ordered my order!!” 

“He’s just telling you he put in his order,” I explained to her as I led Aaron away from the counter and toward the chocolate milk he wanted.  I thought it was funny…and sad…and I was a little angry at the girl’s impatience.  But I know that to some, Aaron is an odd shape, so to speak.  Hard to figure out.  Off-putting, even.

I have to say, though, that he makes me laugh when he does things like that.  He’s so one-of-a-kind…so himself…so uninhibited.  Oh yeah, have I been humiliated and red-faced and angered and surprised!

But I’ve also been blessed and taught so much and humbled and thankful.  And those moments…those lessons…I must remember and focus on and treasure.

Like this one:

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See what I mean?  He’s most certainly my round guy in an oblong world!  

 

From Bliss to Brokenness

On Monday, November 6, of last year…..yes, 2017 is – as of today – LAST year!!  Anyway, on that day last year our washing machine loudly died.  I mean, the noises coming from the bathroom/laundry room were downright scary.  I remember that date because two days later, November 8, was Aaron’s birthday.  Gary and I met at Lowe’s after he got off work on Tuesday night, where we found our dream machine, got it ordered, and were told that delivery would be on Thursday.

Thursday was the day we were having two of Aaron’s favorite friends over for a birthday supper, so I knew I would be home most of the day as I got things ready.  It was also the day that Aaron woke up in a very wet bed, so it became the day of a huge mound of wet bedding piled near our dead washing machine, waiting on our brand new dream machine.  And friends coming for dinner. 

So I prayed as I made apple pie….Aaron’s birthday “cake” of choice.  I asked God to please let the dream machine come sooner than the possible delivery time given to us, which was between 12:00 and 4:00, and usually means it might be there by 6:00 – with friends coming for supper and with Aaron very picky about his bedding and covers being JUST right.  It was shortly after 11:00 when I asked God for this kindness…not really near the expected delivery time.  But don’t you know, that within two minutes my phone rang and it was the delivery guys asking if it would be ok to come early!

I almost said, “Amen!!  You come right on over!”  I didn’t because I wanted my dream machine delivered and was afraid I would scare them away, but I did share with them God’s sweet provision and answer to prayer as they installed my dream machine.  One man smiled as he worked and the other said, “God is still on His throne!”  I did say “Amen!” to that!

I’ve loved that new washing machine.  The tub is so large that I have to stand on my tiptoes to reach the bottom of it, but does it ever hold big loads, like bedding!  And often I think back to that sweet answer to prayer on my very busy day….how God provided the dream machine in the first place, and then gave it to me early when I asked.  I love those “simple” and kind answers to prayer.

So fast forward to December 22, the Friday before Christmas, when Aaron woke up in an even wetter bed than the one of the month before.  Seizure?  I didn’t hear one.  More likely just too much drinking water before bed.  Regardless, everything needed washing on the VERY busy day of cleaning and cooking before the kids came in and our Christmas began.  Oh well, nothing to do but DO what needed doing…and I had my wonderful new dream machine, remember?

I was thankful for that extra large tub as I loaded Aaron’s wonderful waterproof mattress pad and sheets into it, and then went about my other work for the day.  But when I went back to check on that first load, I found it to be dripping wet.  “Oh dear,” I thought.  “What could be causing that?”  I had washed heavy loads before with no problem.  I set the load on a rinse and spin cycle, but still had the same dismal results when I checked it later.  Setting it again, I watched closely and found that water wasn’t entering the tub, and the tub wasn’t spinning.  Nothing in the manual helped and nothing I did worked, so I was stuck with all of Aaron’s bedding in another huge pile, and very wet bedding in my dream machine. 

Gary worked and worked on that machine when he came home, to no avail.  I did manage to get the very wet items dried in our dryer, but still had piles of laundry at the end of the day.  Gary called Lowe’s and a repairman was scheduled, but not until Wednesday…which this year was our Christmas Eve. 

Bless his heart, Gary insisted on taking all the laundry to the laundromat on Saturday morning.  Aaron helped him carry the bags out to his truck, and before too long Gary was back with lots of wet laundry to be dried. 

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And when the repairman came on Wednesday, he found the problem but told us he wouldn’t be able to come back with the needed part until January 2nd. 

So we have lots and lots of laundry sorted and piled on now empty beds since all the kids have come and gone after Christmas.  Of course, that means extra bedding and extra towels waiting to be washed in my dream machine that has turned into a little of a nightmare, honestly. 

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I went from happily sharing this evident answer to prayer to scratching my head at the failure of it.  Not the failure of God, mind you, but the failure surrounding this provision…my dream machine!

But through this really simple annoyance, God has spoken to my heart.  How many times He has clearly answered my prayers, only to also lead me to…at times…a hard place where I must trust Him.  It’s so easy to praise Him for clear answers, but sometimes difficult to trust His sovereignty when the answers aren’t a bed of roses. 

Today’s answers to prayers don’t guarantee a carefree tomorrow. 

But always…ALWAYS…God DOES answer.  His answer may contain trials, but He also ALWAYS has a reason for those trials.

Gary and I were married over five years before Aaron was born.  I wondered if I would ever have a baby.  That positive pregnancy test was one of the happiest days of my life!  We thanked God over and over!!

So fast forward to now, 33 years later.  When I held baby Aaron, I never dreamed of seizures and autism and behaviors and our son still with us at his age.  And like my broken dream machine, our dreams for Aaron have certainly taken a different turn.  Aaron isn’t broken.  He is just the way that God designed him to be.  But my dreams were broken.  Our amazing answer to prayer has also carried with it a huge element of grief and testing.

Yet I know…I KNOW…that God is in control.  With His blessing of Aaron in our lives has also come some brokenness.   Our life is on a far different path than we had ever envisioned.  But on that path has also come tremendous cause for trust in God…which teaches us patience…waiting…and then peace.  God’s sweet peace amid the piles of pain and mess that sometimes surround our days.    

I shouldn’t be focusing on the ANSWER to my prayers, but on the God behind that answer. 

And in that focus…in God alone…I can rest and I can trust. 

“God is our refuge and strength, a very present help in trouble.  Be still, and know that I am God.”  (Psalm 46:1,10)

What better way to start the New Year than this!

 

 

 

Does God Like Me?

“Mom?” Aaron asked last night as he was going through his ever-important bedtime routine.  I was ready for yet another question about what the SS means on the side of the Poseidon…or what kind of vision do the aliens on Pacific Rim have…or what is the quick freeze on The Day After Tomorrow movie?  So I just absently responded with my all-too-often reply.

“Hmmm?” I absently answered as he stood beside me in the bathroom, watching me put something away. 

“Do I have seizures because God doesn’t like me?” he continued.

And I stopped…stopped dead in my tracks at this very unexpected question. 

I looked up from what I was doing, into his very serious face. 

“I just wondered if I have seizures because God doesn’t like me,” he continued. 

Wow!

This is like a question Job would ask, and I wanted to give the right answer without being too shallow or too deep.

I told Aaron that God loves him very much, and that sometimes He allows things to happen.  I wanted to go into full theology mode, but I knew that I could easily lose Aaron, so I assured him again of God’s love and that when we have those questions we need to remember what we know about God…that He IS love, even when we don’t understand what He allows.

Aaron went on to bed soon after, but his question lingered in my mind into this morning.  What brought that question into his mind?  What had he been thinking about? 

Gary and I talked last night at supper, just the two of us, about how on some days we feel like it’s Christmas…and on other days, not so much.  What brings on that “Christmas spirit” we sometimes work so hard to achieve?  At times, we don’t set out to create that feeling, but when it’s missing we wonder what we missed.  Are we tired?  Worried?  Overwhelmed?  Broke?  Or broken?

I walked into Aaron’s room this morning, carrying his fresh coffee and finding him soundly asleep.  I spoke to him but he didn’t stir.  Coming back a little later, I pulled back his covers as he grunted…and I was not happy with what I saw.

A wet bed!  A totally soaked bed!

And last night he and I had changed his sheets!  I was happy to mark that off my Christmas To-Do list. 

“Are you kidding me?” I exclaimed. 

“What?” Aaron sleepily asked.

“You wet your bed!” I impatiently answered.  I was pretty certain it wasn’t a seizure, so I added, “No more water before bed!”

And off I huffed, mumbling my frustration.  Of all days!  I was feeling pretty good last night about finishing the gift wrapping and most of the grocery shopping, and saving Friday for house cleaning and the beginning of my cooking. 

Plans set.  The “Christmas spirit” picking up!

And now this…this time consuming, unexpected, yucky mess!

As I showered and got myself ready, Aaron’s question of the night before came back to my mind.  I was reminded of how much I wanted to impress God’s love upon him.  How could I do that if I was grouchy with him?  And again, how could I answer his searching question in a way that would impact him?

As I thought about it, God gently nudged my heart.  “It’s Christmas, Patty,” He seemed to say.  “What better time to explain my love than at Christmas?”

All of a sudden, wet bedding and a busy day ahead didn’t matter so much.  The Christmas music playing in my bedroom took on a clearer meaning.  I decided to talk to Aaron on our way to his day group.

He promptly turned on the Christmas CD that was in the player as soon as I turned on the van.  “Number 12,” he flatly said.  Aaron always follows the numbers of songs very closely.  “This CD has 14 songs,” he further explained.  “It’s on number 12 now.”

I smiled.  He seems to think that I want to know this information as much as he does.  But this morning, I was glad to know that I had only three songs to go before I could talk to Aaron once again about his last night’s question.

Number 14 song completely ended, and the CD went to number 1 again before Aaron removed it.  You do NOT remove the CD when the number 14 is still showing.  It must have moved on to the next song, just so you know.

I grabbed the moment.  “Aaron, do you remember asking me last night if God doesn’t like you because He lets you have seizures?” I asked. 

“Yeah,” he answered as he placed the CD in its case.

“Well, this is the perfect time of year to remember how much God loves you.  He sent Jesus down to earth to be born as a baby because He loves you and me that much.  You know that’s what Christmas is all about,” I said.

“Yeah,” he repeated. 

“So you don’t have to wonder if God loves you or not because you have seizures.  We don’t understand all that, but we do know that He loves you a bunch!  Jesus’ birth shows you that every day!” I continued.

We continued talking a bit as we neared his day group.  He was content with that answer.  And I noticed in my own heart a return of that mysterious “Christmas spirit.”  It had nothing to do with this:

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Or this:

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But definitely had everything to do with this!

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My Christmas verse this year, so appropriate for me and for Aaron this morning, is one we all know: “For God so loved the world, that He gave His only begotten Son, that whoever believes in Him would not perish but would have everlasting life.”  John 3:16

I need to run!  I have a load of bedding to put in the dryer.

Merry Christmas to all!