I Almost Missed It

A little after 6:00 yesterday morning, I heard a loud thump coming from Aaron’s room.  I opened his door to find him lying on the floor beside his bed.  He had obviously fallen out of bed, but why?  I didn’t hear a seizure, so I assumed that he had just been too close to the edge of his bed and ended up tumbling out onto the floor.  But he wasn’t waking up and I was wondering what had happened.  He’s too big for Gary and me to lift, so I had to leave him there after checking him for injuries and hope that he woke up soon.

He did awaken and climb back into bed.  Later, when he got out of bed and had taken his shower, he came into my bathroom where I was readying for the day.  “Mom,” he said in a low voice.  “I don’t feel well.  My head hurts.”

I looked at him and saw a red mark on his forehead where he had hit his head on the lower shelf of his nightstand when he fell out of bed.  Poor Aaron.  Sometimes it seems that if something’s going to happen, it’s going to happen to Aaron.

After talking to him for a few minutes, I decided to let him stay home for the day.  I was mentally shifting gears then as I rearranged my schedule somewhat, knowing that Aaron would be home.  It’s really not a life changing big deal, usually, to keep Aaron at home on days that I don’t plan on him being home.  But I do have to shuffle some things around that are on my list for that day.  Like I said, not a big deal on most days……but it can be an inconvenience. 

There’s another element, too, in keeping Aaron at home.  I’ll be honest…..I enjoy my alone time and am refreshed during my breaks from Aaron.  I feel selfish to say that, but all parents understand what I mean.  As I make a decision to keep Aaron with me all day, I know that I might end up frustrated as the day progresses.  He likes to shadow me all day between his times on his computer, talking constantly about things that either don’t interest me or that I have heard over and over and over. 

It’s at those times that I know I have a decision to make…..basically, be content or be miserable.  Be understanding or be irritated.

I was thinking about these things this morning as I heard a man on the radio talking about his unplanned health issues that have severely impacted his life.  He said that he has learned not to let his joy be dictated by his circumstances.

On a much, much smaller scale, that is the decision I faced yesterday.  And it’s the decision that I face on many days, not just concerning Aaron, but concerning every aspect of my life. 

Do I allow my circumstances to dictate my joy……or do I let God dictate my joy even IN my less than ideal circumstances?

God tells me to be content in every situation, with thankfulness to boot.  I don’t even want to tell you how many times I mess that up!

I thought back on yesterday with Aaron and was struck by what I would have missed had I not kept Aaron at home…….other than tons of talk about the movie Battle Los Angeles; his new delight in playing Battleship on his computer as he expounds on EVERY. SINGLE. WEAPON.; and whether Charlie Daniels is from the north, the south, or the west, and is he a cowboy singer or a country singer; and so much more.  Really.  Much, much more.

So what would I have missed?

I would have missed his heartfelt hug, so rare on most days from Aaron.

I would have missed him at lunch, saying, “I’ll wait for you to eat with me, Mom, so we can pray.”  Then holding his hand and listening to HIM pray his simple, sweet prayer.

I would have missed him asking if he could do the watering of my porch plants.  Look at his tongue!  🙂

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I would have missed him going with me to Dillon’s, where he asked if he could buy two thank-you cards for Barb and Brandy at Paradigm.

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I would have missed watching him prepare those cards, and ask if he could include a Papa Murphy’s coupon in each one.

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I would have missed the opportunity for God to once again speak through these simple things to my sometimes stubborn, selfish heart.  I am living the life that God planned for me.  It’s not a bad life at all, but not necessarily the path of life that I would have chosen if I had been given the option to plan it all myself.  I mean, I’m the age where I should be an empty nester and have freedom…..right?

Nope.  Not at this point, and maybe never.  But there is so much joy, even in the frustrations, because I have learned that God is good and His plan is good.  HIS plan……not mine, always. 

So yeah, my circumstances should not dictate my joy.  My joy is dictated by God IN my circumstances. 

Being thankful is a huge part of my joy.  It’s really the key that opens the door to joy, but it’s the hardest thing to do sometimes.  It’s pretty cool that Aaron wanted to buy those thank-you cards yesterday.  I need one to continually hand to God, every day, many times.

I bet Aaron could help me with that.

Oh wait……he already has.   

 

It Makes Me Think

I wrote earlier about Aaron’s difficult day on Monday, and about his desire to take a “sorry card” to his friend whom he had hurt.  ( Another “Sorry Card”)  Time now for a quick update.

I walked into Aaron’s room on Tuesday morning, carrying his cups of coffee and finding him sitting on the edge of his bed.  He was writing in his log book the precise time that he was getting out of bed, and still trying to fully awaken.  I know not to talk a lot to Aaron first thing in the morning.  He needs time to process his new day, time to drink his coffee, time to shower…..and I need time to evaluate his mood.  So I said a simple good morning as I put his coffee on the bookshelf beside his desk.  He never even looked at me, which is typical.

But he did speak. 

“I don’t want to go today,” he softly said.  “I have a headache.”

I never know if he really has a headache, or if he’s just trying to get fully awake.  I don’t try to talk him OUT of having a headache, and neither do I encourage him to indulge his headache. 

“I’m sorry,” I said as I walked out of his room.  “I’m getting in the shower now.”

“I don’t want to go today,” he repeated.

“But what about the “sorry card” and Burger King coupon for J, and the pillow for S, and the green pepper for Barb?” I asked.

He was silent.

I went on about my morning.  I heard him taking a shower and then later heard him on his computer, yelling happily…..which is always a good sign that his outlook has brightened.

I went to his room for his glasses so that I could clean them before we left for Paradigm.  There lay the pillow for S, and the “sorry card” for J, near his empty coffee cups. 

“I’m going, Mom,” he said.  He even sounded cheery, and I was very relieved.

We walked out the door later, Aaron carrying a bag in which we had placed the pillow and the green pepper.  His “sorry card” for J, along with the Burger King coupon, were in a plain envelope and placed in the bag as well.

Aaron went into Paradigm with no hesitation when I dropped him off at the curb.  I prayed as I drove away, that Aaron would be happy and kind and would actually give his gifts to his friends…..especially the “sorry card” to J, for that was most important.

That afternoon my phone rang.  The caller ID displayed Barb’s name, and my heart dropped a little.  Sometimes Aaron calls me using Barb’s phone, and some of those times it’s because he’s unhappy.  Sometimes Barb calls me, though rarely, but usually it’s because Aaron is having a really rough day.  Sometimes Aaron also calls just to loudly laugh and tell me how much fun he is having.  Sometimes answering that phone is like playing Russian Roulette.  I just don’t know what pressing that answer button will bring.

“MOM!!!!” Aaron yelled into the phone.  And I immediately knew that he sounded like all was well.  “I wanted to tell you something!!”

“OK,” I simply answered, hoping for the best.

“I’ve been having a good day!” he continued.

“That’s wonderful!” I replied.  “Did you give J the “sorry card” and the coupon?”

“YES!!!” he said.  “WAIT, MOM!!!  WAIT!!!!” he eagerly said.

Now this always means that Aaron is getting ready to hand the phone off to someone else.  Often it’s Barb, and I’ll hear Aaron say to her, “My mom wants to tell you something!”  And Barb knows full well that I didn’t say I wanted to tell her something, so she gets on the phone laughing and she hears me laughing, and we talk for a minute while Aaron – I’m quite sure – is standing nearby rubbing his hands together furiously.

So on this day I was prepared to once again hear Barb’s voice, but it wasn’t.  I heard a young man’s voice haltingly saying hello to me.  He was a little hard to understand, but I figured he was J.

“Is this J?” I asked him.  He said yes.

“Thank you for the card and the coupon,” he said.

“You’re very welcome, J,” I told him.  “I’m sorry that Aaron hit you.”

“Oh, it’s OK,” he replied.  And he said something else about the coupon.  I could tell he was very happy with that, and with the “sorry card,” too.

He handed the phone back to Aaron, who told me with great exuberance that he had also given the pillow to S and the green pepper to Barb.  We soon hung up, with me feeling very happy for Aaron.

As we drove home that afternoon from Paradigm, we talked about how much it meant to J to get the card and especially the coupon.  We talked about how S smiled when Aaron gave her the pillow.  We talked about how Barb thanked him for the green pepper. 

And we especially talked about how happy it made Aaron when he was kind to his friends……how much better he felt on this drive home because of being nice.

These are simple, elementary truths that seem so hard for him to retain.  Aaron wants to be nice.  He really does.  But his impulses and his lack of filters sometimes drive his “nice” desires out of his brain quickly as he responds to the moment.

The next morning, Wednesday, Aaron wanted me to go inside Paradigm when I dropped him off.  He wanted me to talk to S about the pillow he had given her.  Sometimes my to-do list makes it hard for me to agree to anything extra, but something told me that I should do this for Aaron.  So I parked the van and we both got out, walking inside his day group together.

Aaron immediately strode over to the wheelchair where S was sitting, and I followed. 

“S!!!!” Aaron said, rubbing his hands together.  “Here’s my mom!!!!”

I felt like I was Vanna White on Wheel of Fortune.  “Here’s Vanna White and Pat Sajak!!!!!” 

I walked around to where S could see me, and I patted her arm as I told her hello and asked how she’s doing.  S always says that she is fine, as she is all bent over in her chair.  She amazes me as she does something else I always see when I am with her……she smiles.  A huge, sweet smile.

“Did you like the pillow that Aaron gave you?” I asked her.  There was that wonderful smile again as she looked up at me and said a simple, “Yes.”  But her smile said it all.  It must mean a lot to her, in her limited world, to have friends.  I know that Aaron understands that.

One day, when talking to me about his friendship with her, Aaron said to me, “S doesn’t have much friends.  Am I her friend?”  I told him that he is indeed her friend…..a good friend.

“It makes me think I don’t know what to think,” he answered after some thought.

How sweet!  How telling! 

Friendships do matter to Aaron, very much.  He just doesn’t always know how to make them…..how to maintain them……how to express his feelings to his friends without being loud and rough. 

But sometimes he does, like with S.  He talks a lot to us about her limitations and he feels empathy for her.  So even if he thinks he doesn’t know what to think, the very fact that he IS thinking about these things is very positive to us.  We’re thankful that this week turned out so well…..that Aaron hopefully learned some important lessons…..and that those lessons will actually STICK in his brain!!

Because trust me, there are many many days that Gary and I look at each other after an Aaron episode and scratch our heads.

Aaron’s words could easily be our words:  It makes us think we don’t know what to think!!!

But I do think that this week has been mostly positive, for me and for Aaron and hopefully for his friends. 

It makes me think that we have a very special son, even when he makes me think I don’t know what to think!

And that’s just how it is around here.

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Another “Sorry Card”

I pulled up in front of Aaron’s day group today, waiting for him to come outside and wondering as I always do in what mood I would find him.  He wasn’t very happy to go this morning.  Mondays are often difficult for Aaron, like they are for many who must return to work or school.  Problem is, Aaron isn’t always able to filter his frustrations, so he may be angry and rude as he expresses his Monday morning blues.  But he did go this morning, carrying his bag as he got out of the van…….his bag holding two bottles of water from the house, two sausage biscuits and two boxes of Hot Tamales from Quik Trip, and two cucumbers from our garden.  The water and the food was for Aaron.  The cucumbers were for whomever he decided to give them to today.

Aaron’s language of love toward others is definitely sharing.  I have to watch him or he might try to sneak things out of the house that I don’t want him to share.  Or he might bring a smile, as he did a couple weeks ago, when he put a few okra from our garden into his pocket…..and gave several of the staff at his day group AN okra.  One okra.  I’ve wondered if they think me a bit stingy.

Anyway, I sat in front of Paradigm today trying to prepare myself for whatever form of Aaron would soon be climbing in the van beside me.  Happy Aaron?  Sad Aaron?  Tired Aaron?  Angry Aaron?  It’s so much like still having a kindergartner in school, going to pick them up and waiting for their stories of the day, and seeing what frame of mind they are in.  Except that all the clients at Paradigm are adults, not young children.  My Aaron is nearly 32 years old and weighs 225 pounds!  He is grown up, but sometimes still his issues are not. 

He walked out today with Barb, his very loving staff, holding Piper the resident therapy dog.  Along with Aaron and Barb walked one of Aaron’s friends who often comes to the van with Aaron to see if I have brought our big Jackson.  I could tell that Aaron looked like he had been crying at some point, and I was right.  As the van door opened, Aaron’s mouth also opened as he told me that he had gotten mad at J for telling him to be quiet so that another client could sleep…..and Aaron thought that J was being bossy…..and Aaron didn’t like a hand motion that he said J made (nothing bad – Aaron just really doesn’t like other’s hand motions)…..and so Aaron hit J in the back…..really hard. 

Oh dear.  Children’s issues but in adult bodies.  Barb was kind and supportive as Aaron declared that he did not want to come to Paradigm tomorrow, telling him that she hoped he would come, but not pushing the issue.  I said a little but not much, knowing it’s best to let the dust settle first.  More soft words from Barb and then she mentioned that he gave his two cucumbers away…..and his little friend standing behind Barb brightened, opened her purse, and pulled out one of the large cucumbers.  Aaron brightened, too, and my heart softened for this man/boy who has so many conflicted emotions in any given day, today included.  The moment suddenly turned sweet and funny, his little friend happily holding up her cucumber with a big smile on her face.  These special adults can touch me so deeply if I just pause to soak it all in.

Reality hit again as Aaron and I drove away.  He told me once more that he didn’t want to go back tomorrow.  I was seeing a long evening ahead of anger and sadness, with Gary getting hit with it as soon as he unknowingly walked in the door.  So I calmly talked to Aaron for probably the zillionth time about not hitting people, about how that holds him down in life, and how someday he might get hurt. 

He turned on the CD of Zac Brown.  “Don’t talk, Mom,” he instructed.  “Let’s just listen.”

This suited me fine.  We hit the three lane and rode in silence in rush hour traffic.  Finally, he reached over and turned off Zac Brown.

“Mom?” he asked.  “Can we go to Dillon’s and let me get a sorry card?”

What?!  Aaron’s mood had dramatically changed.  As he has in the past, he wanted to once again get a “sorry card” for someone he had hurt.  But this change had happened quickly.  He was sincere and quiet as we talked about it.  I told him that we had cards at home he could use, and he was satisfied with that. 

“And can I bring Barb an okra?” he continued.  I suggested a green pepper instead, and he was excited at that idea.

“Mom?” he asked again.  “I’d like to bring S a stuffed animal.  That’s why I wanted to bring her my spider.”  But I reminded him that his cute stuffed spider was a special gift from Bruce and Glenda, from Hawaii, and he shouldn’t give that away.  I told him we would look for something else to give S…..his very special friend who is wheelchair bound, all bent over, and the girl with whom Aaron loves to share his food and his conversation. 

I can’t explain the positive change in Aaron’s mood, but I sure have been praying lately about his hitting and his anger at times.  Praying, too, as Gary and I get so tired some days.  So I may not be able to explain Aaron’s happiness tonight, but I can say thank-you to God for allowing it. 

I ended up finding an ancient little “sorry card” that I had saved in my ancient container of cards……two “sorry cards,” in fact……so Aaron chose the one he wanted to give J.  Later, he saw the Burger King coupons from yesterday’s paper that he had cut out.  He asked if he could give one to J, so we chose one to cut out and include with the “sorry card.”

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Then I showed him one of the green peppers from our garden that he could give to Barb, and it met his approval. 

Finding something for S was a little more difficult, but I remembered a very soft pillow stuffed with tiny microbeads, a pillow that Aaron never uses.  He set it aside in his room, ready to take to S tomorrow. 

I was happy that I had started supper early because Aaron wanted me to play the Frog in the Pond game on the Atari system that Gary hooked up to Aaron’s computer.  We laughed and laughed and laughed at me trying to get the frog to catch the bugs.

Aaron offered to set the table for supper.  He fed Jackson a piece of asparagus stalk.  He didn’t dump bad news on Gary when he came home from work.  He told Gary all about our Atari game and all about his sharing plans for tomorrow, but barely was mention made of his rough spot today and why he needed to give J a “sorry card.”  We watched Wheel of Fortune, and we laughed ourselves silly at the Nexium commercial with the man who was made into a burrito.

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I pray that tomorrow morning, when Aaron wakes up and is tired, that he doesn’t change his mind about all that he has planned for tomorrow.  I pray that he is excited about all the things he plans to take to give away, especially the “sorry card.”  That’s the most important of all. 

I’m grateful for this happy evening, and I know that it is one to which I can direct Aaron as an example of how to handle life’s rough patches.  I can honestly tell Aaron that he was a wonderful example to ME of how to overcome anger and frustration. 

Sharing touches a loving chord in Aaron’s soul.  It always has.  I need to work with that more, and get creative.

I can see a trip to Dollar Tree in our future.  We need to restock Aaron’s “give away” items, or I may be missing some dishes…..towels…..jewelry……

 

 

 

 

Aaron’s Love Songs

It’s been awhile since I’ve really written about Aaron.  So many days I want to write, but somehow life prevents me from doing what I would love to do.  I mean, do we really need clean clothes, food on the table, errands run, garden tended, a somewhat tidy and clean house, etc., etc., etc.?!  Then so much time goes by that I lose my momentum……lose the feel of those special Aaron moments…..and so I go on, hoping to recapture them and share them later.

Aaron and I are coming off of a fun, long Labor Day weekend.  It was sad for me because Gary’s Uncle Bob went to heaven on Friday morning.  This was awesome for Uncle Bob, but of course has left a huge hole of grief in the hearts of those that he loved and who returned that love so deeply.  He was a great man.  As Gary checked the price of plane tickets Friday evening, the realization quickly sank in that we could not both go home for Bob’s funeral.  I was very thankful that Gary did go.  At first he said no to that idea, but he really needed to be there with his family.  He’s so glad he did.

Aaron was my shadow for a large part of our long weekend.  We went out to eat……watched movies here at home…….took walks around our back yard with Jackson……washed and ate garden veggies…….enjoyed sitting on the patio and seeing our Hummingbirds at the feeders……watched Wheel of Fortune……and did a little shopping. 

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And I captured one of the best pictures of Aaron ever as we ate at Jose’ Peppers.  Isn’t this just great?

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On our Wal-Mart trip, Aaron went on his way to the electronics while I browsed some on my own…..knowing that I would probably find Aaron later, when I went to pick him up, with some discovered jewel of a movie in his hand.  Sure enough, that happened…..but I was able to dissuade him from the need to buy it now since his birthday and Christmas are looming on the horizon. 

In his other hand, though, he carried a CD.  Any of you who know Aaron know that he loves music.  He loves listening to music any time that the van door closes and the engine starts.  He becomes super focused……another word for obsessed……with whatever current artist is filling his ears with music.  He will announce every song as the number on the CD changes, then sit back and listen closely.  Then at home he will look their songs up on his computer and love every minute of watching them perform.

When it was Neil Diamond, for instance, Aaron one evening said to Gary, “Dad!  Mom and I are listening to Neil Diamond!  Mom likes number 11!!”  Then he paused, because surely Dad knew what song is #11.  When he realized that Dad was not at all adept with knowing #11, Aaron patiently said, “It’s Song Sang Blue.”  Never mind that it’s really Song SUNG Blue.  Aaron isn’t concerned with grammar.

Aaron continued telling Gary about Neil Diamond.  “He always carries a gu-tar.”   “Why does he like a gu-tar?”   “Is that his favorite instrument?”   “He has funny hair.” 

And later, as he and I played Skip-Bo, Aaron suddenly asked, “Why do you like number 11?  Is the sound of that song kind of cute to you?”  So Song Sang Blue was thoroughly discussed, dissected, analyzed, and hopefully understood after we were done.

Back to Wal-Mart and the CD in his hand.  Aaron loves, loves, loves Ronnie Milsap.  He was totally thrilled as he held out his newly found CD for me to see.  “MOM!!  I found Ronnie Milsap!!!!”

Yes, it was Ronnie Milsap all right……Ronnie Milsap Gospel. 

“Aaron, I’m not sure you’ll like this so much,” I told him.  “It’s gospel music.”

“Please, Mom?!!  Can I get it??” he begged.

So I said yes, and we immediately put it in to play as soon as the van door closed and the engine started.  As the sounds of How Great Thou Art filled the van, Aaron bent over and rubbed his hands together every bit as much as if the Beach Boys were singing about girls on the beach, as Aaron says.

Aaron repeats a phrase of the last song, usually, that we listen to as we drive home.  We hear it over and over and over and over for the rest of that day.  So on Monday, many times, I heard Aaron singing these four words – “How great Thou art.”  “How great Thou art.”  “How great Thou art.” 

And on Tuesday, back at his day group, Barb texted to tell me something and then she said, “Aaron was singing How Great Thou Art earlier.”  HaHaHa!  Isn’t that just the best?  Maybe that’s why he was having such a great day.  And he also took some of our garden tomatoes to share, giving some to his friend Yolanda, a fellow client.  Look at this picture of happiness.

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Last night Aaron wasn’t feeling well at all.  He said his head and stomach hurt, and at 8:30 he wanted to go to bed.  “Maybe I suddenly caught a germ,” he quietly said as he and I went through his bedtime routine.  But he was off, not even asking if it was going to rain or checking on the outdoor temperature, which he ALWAYS does!  He did ask if I would have the monitor on.  I know why.  I know he’s afraid of having seizures, and that just breaks my heart for him. 

Friends and family prayed, and there were no seizures during the night!  I was so, so thankful for that!  Aaron got up this morning after sleeping for nearly 12 hours, saying his head still hurt.  Yet he always says this in the morning, so I wasn’t too sure.  He sat across from me at the kitchen table, giving me a stare down as he hoped I would tell him to stay home.  As the morning went on, he improved.  Coffee and a shower works miracles!  And so did the offer of a Quik Trip stop on the way to Paradigm!

Later, sausage biscuits and Mike & Ikes in hand, we headed down Kellogg on the way to his day group.  The artist of choice now filling the van was Alan Jackson.  Aaron picked up the CD case and said, “Mom!  Look at #5 and #11.  They’re BOTH about LOVE!!!”

So as #11 played, I made a kiss sound in rhythm to the music……and received a resounding whack on my arm from Aaron!!

“What’s up with that?” I asked.  “I thought you liked the songs about love.”

“Well, love is too weird,” he explained.  “When people are in love, they have to kiss!!”

I just smiled.  I can’t change Aaron’s mind about love being weird, but what he doesn’t know is how much he is loved.  He knows it, but he doesn’t know it.  Does that make sense?

Good days……bad days……laughter……frustrations……joy……worry……fun……anger.  We have it all with Aaron, magnified on most days. 

But when we’re feeling like singing “Song Sang Blue” on one day, there are many days that we’re singing a love song about Aaron.  But don’t tell Aaron.  He’ll think it’s weird……and then give us another sharp slap……

And it’s back to “Song Sang Blue!!!”

 

 

Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning. 

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Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not.  It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times.  To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store.  I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart.  Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash.  If you lived with him awhile, you would see that those items are not a priority or an interest of his.  Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby.  You would think that this was the first time he had ever seen this gentle spray, but it isn’t.  It’s probably the 753rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time. 

I turned and headed for the registers after deciding against any cantaloupes.  I knew that Aaron was lagging behind.  I was already in the florist section when I turned to look for Aaron.  There he stood, large and loud Aaron, holding up an artichoke.  His face was just a huge smile as he held his prize up for me to see.  I had to smile, too, standing there among the sunflowers and daisies.  What is it about artichokes that always, always grabs Aaron’s attention?  We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered. 

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to.  I could see them making the connection……wondering, I’m sure, about Aaron. 

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age. 

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

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Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

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Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

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Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk. 

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Noticing after he got his teeth cleaned that the digital clock on the counter was flashing.  “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock.  Incorrect time is intolerable!

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Recovering from three strong night seizures.  We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans.  I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks.  He was happy.  I was happy.

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And finally, sunflowers.  Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden.  He has watched them grow and grow and grow, until now they are much taller than he is.  Now he can’t wait for them to bloom.  He was looking at the sunflowers one day when they were much smaller.  “When are they supposed to be the size they’re supposed to be?” he asked.

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I smile at the way he phrases things.  His unique way of expressing himself is a big reason I started this blog.  I can remember wondering, when Aaron was much younger, how he would turn out.  In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording. 

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be.  Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke.  Yet Aaron is who he is supposed to be because he is who God created him to be. 

But God gives grace when we need it the most.  He really does.  I don’t think I even realize sometimes in just what forms His grace comes to me.  Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us. 

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect.  Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom.  Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes. 

I pretty well know, too, what Aaron would say if he looked at this sunflower picture.  “What?!” he would probably say.  “That sunflower is wearing shades!!”

Better to see you with, Aaron.  Better to see you with. 

 

 

 

 

My Mom is Weird!

I haven’t done much writing lately for various reasons, a big one being that I had thumb surgery recently.  This clunky splint makes typing a little difficult.  My immobile, fat wrapped thumb keeps wanting to hit the space bar, so now you will understand if you see unnecessary spaces here and there that I don’t catch.   The backspace key is my friend!

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Gary has been taking excellent care of me, and taking up the slack in areas that I still can’t manage.  Even faithful Jackson seems to have been concerned for me at first.  I think now he’s just used to the new me. 

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But Aaron…..dear Aaron……has mostly been worried about……Aaron.  Oh, he’s shown a little empathy.   That’s not really the right word.  He’s shown a little interest in my condition, but showing a great deal of care doesn’t come naturally to Aaron.  But the times that he does express care are special indeed.

He was very happy that he got to stay home on the day of my surgery.  “When you go to take your surgery,” he had asked the day before, “do I have to go to Paradigm?”  Gary and I were at the surgery center very early, so neither of us could drive him to Paradigm.  He loves staying home for whatever reason, so I think he was secretly happy that I had surgery because it did benefit him on that day.

He eyed my left hand suspiciously when I got home.  I knew he was uncomfortable so I just tried to act normal and put him at ease.  But when I laid down in bed in the middle of the morning, he was very uncertain.  He understood, of course, that I had surgery.  But he did not  know how my surgery would affect our normal routine……and therefore affect him, greatly.

I kept the bedroom door open as I rested in bed.  It wasn’t long before I heard Aaron walking up  the hall from his room to my room.  I just kept my eyes closed.  Aaron just stood at the bedroom door, not speaking, but I could feel him staring at me.  He stood there and stared for awhile before he turned and walked back to his bedroom.  He was exhibiting his uncertainty.

It wasn’t very long before I heard his familiar steps once again in the hallway.  He stood once more at my bedroom door for a few seconds.

“What’s for supper?” he finally asked.

I told him there was plenty of food in the frig to choose from so he could have his pick.  It wasn’t really the answer he had hoped for, I knew.  He thought something along the line of pizza or a sub would be far better.  My hand surgery wasn’t working to his advantage as much as he had hoped!

But he was very happy that Gary brought him a cheddar pasta salad when he went to pick up my prescriptions from Dillon’s.  This surgery might work out after all, Aaron thought.

And soon I heard him walking heavily up the hall again.  No need to walk softly when there are matters to address that are very important.  I just waited quietly while he stared at me. 

“Are you watching Wheel of Fortune?” he asked.

No asking how I was feeling.  No wanting to know if he could bring me something.  No queries about my surgery.  And no surprise from me.  Aaron was uncomfortable and he wanted Mom to be Mom again, surgery or not.

I told him that I imagined I could watch Wheel of Fortune.  Later that afternoon, I went down to sit on the couch.  Aaron sighed when I asked him to carry my pillows.  He was seeing that this surgery would take a toll on him and his routine after all. 

We watched Wheel of Fortune that evening, and Aaron was happy.  He didn’t seem to notice my pain pill drowsiness.  He was just very happy that we could have this normal part of our day restored.  He was not so happy, though, to hear that playing Skip-Bo was going to be questionable for a day or two. 

Later that night, Aaron walked with purpose into the kitchen where I was standing.  “Mom!  Here!” he said.  “I brought you something since you had surgery.”

Surprised, I looked in his outstretched hand and saw that he held two yellow gumballs.  He had gotten them from his jar of gumballs in his room.  Usually he tells me I can have one gumball, and on a rare occasion I can have two.  This gift of TWO gumballs, then, was a true gift from his heart. 

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I thanked him and then put them on the counter.  “No, Mom!” he said.  “Hurry and eat it before it becomes tomorrow!”

So I had to smile and I had to “eat” the gumballs immediately.  I didn’t exactly feel like it, but I did chew those gumballs until all the taste was gone as I relished the kindness that Aaron had shown in his own Aaron way.

Life returned to a measure of normalcy fairly quickly.  A couple days after my surgery I even drove Aaron down to Great Clips for a much needed haircut.  As we sat in our chairs waiting for his name to be called, I showed him how I was to exercise my fingers that were protruding from my splint.  I tried to be funny as I bent my fingers, saying “Up, down, out, in!” as I bent them back and forth.  I should have known that Aaron wouldn’t appreciate my humor.

“You’re weird, Mom!” he said.  And then he looked toward the hairdressers and very loudly said, “My Mom is weird!!  She had surgery and she’s weird!!”  What do you do when all eyes turn to you and your son?  Laugh!  And hope they don’t agree with Aaron!

Aaron has done really well with this whole “Mom had surgery and she’s weird and I want things back to normal” business.  He has actually been helping with carrying and setting the table and bringing in trash cans and other things, much more that I thought he would.  He had a very grouchy week at his day group last week, though, and I don’t know if all this was part of why that happened or not.  Sometimes we just don’t know with Aaron.

And we have been playing Skip-Bo again.  Gary shuffles the cards for us and off we go!  Aaron sometimes acts like his silly self.  See the clothes pin on his ear?

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But he plays with the intent to win, realizing that Mom still can watch for cheating even with a splint on her hand!

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The other night he once again strode downstairs to find me on my computer.  “Here, Mom!” he said.  “I saved this for you.”

I looked at his bowl that he held toward me and saw it.  One lone little fruit gummy for me to eat. 

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It’s not the size of the gift that matters, but the heart behind it.  It’s true not just for Aaron, but for all of us.  Sometimes I have to look hard for Aaron’s gifts, but they are there, sweet and honest.

Brutally honest sometimes (weird Mom!)………but that’s Aaron!

 

 

 

 

 

Giving Away Kindness…..Aaron Style

In the last blog I wrote about Aaron, I talked about how much it means to us when others treat him with kindness.   Simple Kindnesses   Even the smallest kindness shown to Aaron is just huge to us, and to him. 

On the flip side of kindnesses being shown to Aaron is the issue of Aaron showing kindness to others.  Sometimes we’re happily surprised at how Aaron will be kind to others.  Sometimes we’re sadly embarrassed at his total lack of kindness.   We never know what a day will hold.  We never know what an hour will hold.  We actually never know from minute to minute what Aaron will display toward others. 

Aaron is pretty self-centered, which is common for those with Asperger’s.  Empathy doesn’t come naturally to him most of the time.  For instance, if I’m crying it makes Aaron either angry or scared.  He doesn’t ask what’s wrong or ask me if I’m OK.  Instead, he might make fun of me or get very agitated.  I know that about him, so I try to never let him see me cry.  I can’t invent that sort of empathy in Aaron, try as I might. 

Therefore, when Aaron shows that he cares about someone, those of us who live and work with Aaron are delighted.  I wrote a few months ago about how I saw Aaron walking to Quik Trip with his day group.   Pictures of Kindness   He purposely waited to be the last in line so that he could walk with his friend, S., who is in a wheelchair.  It melted my heart to see that about him. 

We make it a purpose to help Aaron see practical ways that he can be kind.  For instance, when we eat out I make sure that Aaron always says thank-you to our server.  The same goes for thanking those who help us at Wal-Mart or the grocery store, Great Clips, or anywhere else we go where we receive assistance from others.  I don’t think Aaron would do that by himself if we didn’t remind him over and over to do so.  Verbal kindness is very important to all of us, and we want Aaron to be verbally kind to everyone.  Trust me, sometimes his verbage is anything but that, yet we have to keep reminding and reminding. 

A couple weeks ago, when I went to pick Aaron up at his day group at the end of the day, one of his staff came out to tell me that it was a rough day with Aaron.  I still feel like the parent of a disobedient, still learning kindergartner on those days.  Yet we need and want to know what’s going on so that we can help deal with it and address it at home.  A couple days later, this same staff headed for my car as I waited for Aaron.  Aaron ran behind her, all smiles, and opened the passenger door with gusto as I rolled down my window to talk to Melinda.  I was dreading what I would hear, but right away I was all smiles like Aaron as I listened to Melinda tell me that Aaron was awesome and wonderful and fabulous, and all other sorts of affirming adjectives.  I think I was happier than Aaron was to hear those words! 

And there on Melinda’s shirt, like a name tag, was a note that she pointed out to me…….a note that Aaron had written.  It said, “Melinda is cool.”  She was wearing it with pride, all the while confirming to Aaron that sweet behaviors bring sweet rewards of praise and smiles.  Aaron had written a note to another staff that day as well, on her calendar.  It was just extra sweet and funny.

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At his day group, Aaron also loves to give things away.  We’ve really had to work with him to quit giving away his money.  He’ll give others candy, gum, fruit or sliced veggies from home, whole cucumbers or squash from our garden that he has sometimes hidden in his shorts pockets…….you name it, Aaron has probably tried to give it away at one time or another.  And while that’s nice, there are times we have to draw the line and say no.

There are times that helping Aaron to be kind doesn’t necessarily work into my schedule, but I have to remind myself that he needs help with carrying out some of the things he really wants to do.  For instance, a couple weeks ago he wanted me to bring Jackson with us when I dropped Aaron off in the morning at Paradigm.  I wasn’t really in the mood to do that, but finally I agreed and off we went, Jackson sitting on the seat in the back of the van looking all around and Aaron happily talking in the front seat.

Once at Paradigm, I attached Jackson’s leash to his collar and we went inside.  The other clients love Jackson, so he was received with lots of petting and hugs.  But the one person that Aaron wanted the most to see Jackson was his friend S., who is wheelchair bound and bent over with her disease. 

“Mom!!  Come over here and let S. see Jackson!” Aaron loudly told me from across the room. 

So I took Jackson over to S., and I was so happy to realize that big old Jackson was just the perfect height for S. to just reach over and pet his head.  She doesn’t move well, but Jackson was able to stand there and let her pet him easily.  Aaron stood there rubbing his hands together the way he does when he’s very happy, his face just one big smile.

And the smile on her face was worth every single extra minute it took me to bring Jackson with us that morning.  I left there later with a huge smile on my face that matched hers……and Aaron’s. 

Aaron has also shown kindness to S. by giving her food.  He has told me that sometimes he has to put it in her mouth, and that it seems weird to him to do that.  But then we talk about her limitations and I remind him that he is being a true friend to her. 

He is also sad when he sees her sitting alone.  I’m not there to see how much time he spends with her, but he has said that he does talk to her sometimes when she’s alone.  It makes Aaron sad to see her lonely, and it makes us very glad in that case to see Aaron sad.

One other thing we recently did was to make cookies for Aaron to take to his friends.  It was a week ago on Sunday afternoon that we made the cookies after I suggested it to Aaron the day before.  He was very happy about this idea.  I had him help measure and pour and scoop so that the cookies were genuinely from his hand.

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He enjoyed taking them the next day and sharing them, giving the whole bag with the remaining cookies to one of the guys when I picked him up that day. 

However, we got an incident report concerning the cookies, too.  I think Aaron wasn’t so nice sometimes with sharing his cookies.  This is so typical.  I can’t let it stop us from doing this nice gesture that others enjoy, but it is discouraging sometimes to see Aaron take something good and make it an ugly issue.  We’ll talk about it during our next baking session, and I’ll drop Aaron off that morning hoping and praying that he’ll be nice to everyone and share equally. 

It’s all a lesson to me on how we can’t give up on Aaron.  We have to keep reminding……and training……and instructing…….and teaching…..

And putting ourselves out there in order to help Aaron become the young man we want him to be, at least most of the time.  We can’t expect it all of the time, but we can’t quit trying. 

Parenting never quits for any of us with children, but with our Aaron the parenting REALLY never stops.  Other special needs parents can certainly agree to that. 

May as well make cookies, right?  And be sure to eat some while they’re warm!    

 

God, Are You Listening?

Gary and I are far beyond the baby years, and we have no grandchildren yet, but we still sleep with a baby monitor beside us every night.  It sits on my nightstand as we listen for Aaron’s nocturnal seizures.  It sure is a handy tool to have!  Most of Aaron’s seizures are at night, in his sleep, so the monitor enables us to hear him and to go help him. 

Aaron never remembers his seizures, which is a blessing.  But he has seen others have seizures at his day group, so he has seen what they can be like.  And he is well aware of how he feels afterward, with a terrible headache or nausea or waking up in a wet bed.  Sometimes he loses his sense of taste for a day or two.    It’s a reality of his life that he accepts remarkably well……probably much better than I do.

In the last couple years, though, Aaron has shown a degree of fear concerning his seizures.  He’s not one to sit down with me or Gary and verbally express his fears.  But every single night as we go through his bedtime routine, he asks me two questions.

First:  “Mom, is it going to rain tonight?”  He just must know if it’s going to rain.

Second:  “Mom, are you turning the monitor on?” 

Sometimes I beat him to it and after our goodnight hug I answer those two questions before he can ask them. 

“Good night, Aaron.  Sleep good.  I’ll see you in the morning.  Love you!  And it’s not going to rain, and I will turn the monitor on.”

But if I’m going downstairs to fix the coffee pot or whatever, Aaron always says, “Do you want me to bring the monitor down to you?”

And on many nights, just for extra measure, we will hear Aaron walking up the hall and barging into our bedroom if the door isn’t locked.

“Mom, is the monitor on?  Is it on right now?” he asks.

Sometimes when I’m extra tired I get impatient with this routine, and then I feel guilty about it.  That’s because I know why Aaron is so concerned about that monitor.  I asked him about it once, knowing that my questions can put thoughts into his head, but still wanting to hear what he had to say.  So I asked him if he was scared of having a seizure, and he told me that he was.  We didn’t talk deeply about it, but his answer was enough to pull at my heart and make me think as I often do about how I would feel if I was in his shoes.  Seizures are definitely scary, and Aaron most definitely wants me or Gary there with him if he has one.  Of course he does.  I would feel the same way.

So every single night, and also for every single nap on days that he is home, I make sure he knows that the monitor is on and that I am listening.

The monitor did its job last night…..three times, actually.  Aaron’s first seizure was a little after 11:30, and then two more followed during the early morning hours.  He’s sleeping on the couch now – has been for a few hours since he woke up before 6:30 to discover his condition, change pajamas, and make his way downstairs.  He took his morning meds and went right back to sleep, waking up awhile ago to ask for his cups of coffee, and then back to sleep again.  Seizures take such a toll on his body.  They take a toll on my heart.

But this morning…….as God always, always does…….my heart was comforted by reading from the book of Psalms. 

“He who keeps you will not slumber.  Behold, He who keeps Israel will neither slumber nor sleep.”

I can hear me now. 

“God, do You have your monitor on?  Are you listening in case I need you?”

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And God, Who is always patient with me, tells me once again that He doesn’t slumber or sleep.  Did you know that “slumber” means “nodding off?”  Like I do sometimes while Aaron and I are watching Wheel of Fortune…….and then Aaron yells, “MOM!!!  You’re not watching!!!” 

But I don’t have to do that with God…..and neither does Aaron.  God won’t sleep deeply and He also won’t even nod off.  He’s standing by Aaron’s bed with me during every seizure.  Then He stands by my bed when I lay back down and try to go back to sleep, which is often hard to do.  He knows my fears for Aaron and He understands my hurt for him, but He also reminds me that His plan is sovereign……His plan is best……even if His plan isn’t understandable to me. 

It’s just really comforting to me to know that God never sleeps, even at night, and that He is beside me as I stand beside Aaron.  And when I feel uncertain and ask Him once again if He’s really there……if He’s really listening…….He just gently reminds me that He is always there and He is always listening.  

God’s just a very good Father to me and to Aaron, and to each of us who know Him.  Even if our view of Him is through our tears and our fears, we know that God is right there with us through it all.   

Simple Kindnesses

I was at Aldi the other day, having finished my grocery shopping and unloading my groceries from the cart to the back of my van.  Now, if you know anything about Aldi you know that in order to get a shopping cart you must insert a quarter into the cart slot.  Your quarter releases the cart chain and you then have your shopping cart.  When you’re all done, you simply return your cart to the cart holding area, insert the chain, and out pops a quarter for you to take.  You never see random shopping carts littering the parking lot, and you never see an employee pushing a load of carts back to the cart area.  That’s because everyone returns their cart in order to retrieve their quarter.

So there I was, empty cart in hand, when I saw a woman walking in my direction.  She was on her way to do her shopping, her quarter in her hand.  I offered her my cart and she then offered me her quarter, but I did what many other shoppers do…….I told her to just keep her quarter and she was welcome to the cart.  Now you would have thought I had offered to save her $25.00 rather than just $.25.  She was so appreciative, and she said that she would pay it forward to someone else.  I know that Aldi shoppers do this all the time, giving fellow shoppers their empty carts without taking their quarter.  As I got in my van I was all smiles, just like the woman was who now had my cart and still held her quarter.  I thought of what a simple deed that was and yet how very happy it made that woman, and also how very happy it made me.

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Showing kindness can be such a simple act, yet can have such profound effects on the person to whom the kindness is given.  Most simple acts of kindness take no pre-planning or preparation at all.  They simply take an open heart and an eye for opportunities that come our way.

I’m always so thankful for those who show extra kindness to Aaron.  It means so much to me as I’m out with Aaron to see those who show patience and respect for him, even if he’s standing there talking to them about aliens or a computer game or whatever else is in his head……while he might be rubbing his hands together in excitement……or scratching himself inappropriately…..or laughing loudly.  Most people don’t know what to do in that situation but there are those who seem to just be gifted with a special understanding of our special son.

There’s the manager of our nearby Subway, whom I noticed has a knack for focusing on Aaron as if he’s all that matters to her at that moment.  She is completely relaxed with Aaron, and when she told me that her mother worked with special needs and she grew up with those individuals in her home, then I understood.  She asks Aaron what he wants to eat, not asking ME what Aaron wants.  She was on her break one day, sitting in a booth trying to eat her supper, when Aaron spied her and remembered that she paid attention to him.  He stood there talking about the latest movie he had seen, and she just looked up at him and listened as if he was discussing the very most interesting and important thing in the world.  She answered him when he asked her questions.  She made him feel that what he said was valuable.  I wanted to kiss her!!!  But I knew that might be taking it a bit too far!  🙂

There’s Shelly, the hygienist at our dentist’s office who cleans Aaron’s teeth.  We have Aaron’s teeth cleaned every two months.  Shelly should get a medal.  She is very patient with Aaron and knows just how to handle his desire to talk or to stretch or to push the instruments out of his mouth.  Look what she let Aaron hold at his last visit.

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This kept Aaron’s hand occupied and gave him something to think about other than what was going on inside his mouth.  Perfect!!

There was the girl at the theater snack counter this past Sunday.  I thought Aaron was right behind me as I bought our tickets, but I turned and he wasn’t there.  I went to one side of the snack area, but there was no Aaron.  I finally found him on the other side, and by this time he was not in a line but was right up at the counter where a young woman was waiting to take his order.  Aaron saw me and yelled, “MOM!!” as I hurried over to where he was.  The first thing I did was to ask the young woman if Aaron had pushed ahead in line and she assured me that he had not.  I knew instantly that she understood.  A mom just knows.  Relief washed over me as she asked Aaron what he wanted, looking him in the eye, and smiling at him with kindness and not with uncertainty.  She just had a wonderful way about her with Aaron, treating him with calmness and with great ease.  I wanted to quickly thank her specifically for her kindness to Aaron and maybe ask her about her background, but by then Aaron had moved on and was trying to stuff a huge wad of napkins in his pocket and locate a handful of toothpicks, so I had to run.  I’m sure she got that, too.

This encapsulates exactly what I’m trying to say:

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I just love it when somebody treats Aaron like he’s a somebody……because he certainly is a somebody.  He’s special in his own right, and not just a person with special needs.

It doesn’t take someone doing some huge thing for Aaron, like taking him on a two month vacation trip…….although if you want to do that, I might say yes.   No, just like my Aldi cart and the quarter, the kindnesses that mean the most in my everyday life and in Aaron’s everyday life are the “small” kindnesses.  These acts in their everyday hues are really enormous bursts of color to me and to Gary and to Aaron.

Each of us can do the same for everyone that we encounter.  The littlest gesture can lighten a load in others that we don’t even see or know about.  It’s never a small thing to be kind.  We have no idea of the lasting impact a word, an action, or a smile can have on those random people that come across our paths every day.

There’s another aspect to kindness that we have with Aaron as well.  It’s about our efforts to teach Aaron to be kind.  On some days he acts as if he’s never heard the word, but on other days he amazes us and others.  I’ll save that for the next blog.

Aaron does give me plenty of material to write about, after all!

Vacationing With Aaron

A vacation trip means different things to different people.  Aaron was very happy when we told him that we were taking a Fourth of July trip to see family in North Carolina.  He likes seeing Aunt Sandra and others that he knows.  But really, to Aaron a vacation primarily means one thing…….food.  Particularly, restaurant food.  Snack food is right up there, too, on Aaron’s list of favorite vacation activities.  Then there’s Aunt Sandra’s wonderful cooking at her house, which is the best!  Staying in a hotel would be number three, because a hotel usually means dinner in a restaurant before bed.  Rest stops are fun, too, especially if the rest stop is a stop at a filling station……where there is food.  Plus I bring snack food, which is fun, but not as much fun as food that we buy on the road.  So you get the idea.  A vacation for Aaron boils down to one thing:  food in one form or another. 

We left for our Food Fest vacation on Thursday, the 30th.  Aaron wanted to know what time we were leaving, because knowing the precise time for everything in life is vital to Aaron.  So we told him that we would leave around 8:00, hoping that the word “around” would yield us some leeway in Aaron’s mind.  Not likely, but we can always hope that Aaron will be a bit flexible.  As it turned out, Aaron had a very rough night before our 8:00 leaving time.  I heard him having a seizure at 12:30 that morning, with two more strong seizures following during the early morning hours.  It was a long and very tiring night for him and for me, but I was thankful that by morning Aaron was able to get ready for our trip.  I was also thankful that flying had not been an option for us as it’s too expensive, because trying to maneuver Aaron in an airport and on a plane after seizures would have been very difficult. 

We were two hours late to leave, but Aaron was too lethargic to care.  He burrowed around in the back seat as soon as we started driving until he was finally comfortable, laying down and sleeping for quite a while.  He would wake up and look around some, long enough to ask the inevitable:

“Are we getting something to eat?”

“Yes, Aaron,” we would answer.  “We’ll be getting something to eat.”

“When?” he wanted to know.

“Oh, probably later in the afternoon,” we told him.

“So what time?” he asked.

“We’re not totally sure what time,” we answered.

“Oh,” was all he would say.  Until:

“I’m talking about eating in a restaurant,” he clarified.

“Yes,” we said.  “We’ll eat in a restaurant.”

“What time?” he ventured again.

And so back and forth this conversation occurred, over and over again as Gary drove us on our scenic route.  If Aaron was awake, we pointed out the farmer’s fields…..the Mississippi River……the Tennessee River…….the quaint little towns with their interesting sights……the beautiful wildflowers……

But none of it was particularly interesting to Aaron.  Part of it was that he didn’t feel up to par after his seizures.  And part of it is because none of these things held nearly as much interest to Aaron as, say, a Cracker Barrel or Applebee’s sign.  Of course!

Aaron was listening to some music on his headphones when he let us know that he needed to use the bathroom.  We told him that we would stop as soon as we found a place.

“I’m talking about a bathroom in a restaurant,” he informed us. 

HaHaHa!!!  Good try, Aaron.  We knew he must have been feeling better!

We ended that first day happily eating supper at Applebee’s, right beside our hotel in Paducah, Kentucky.  Aaron rolled in his suitcase while he carried his small backpack that held his music CD’s and his CD player with headphones.  And Aaron, who must finish what he has started if at all possible, was very pleased to put on his pajamas and then complete the task of finishing his Ronnie Milsap CD before it was time to turn off the lights and sleep.  Mission accomplished!

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We all slept very well that night.  Aaron was still fairly slow that morning, which is normal after seizures.  But he wasn’t so slow that he didn’t think about food!  He was hoping for breakfast in a restaurant, so we told him that the hotel breakfast was very much like a restaurant.  He didn’t really buy into that, but he was happy to eat again.  And very curious about the bowl of Trix that the woman in front of us had as he leaned over to stare at it, which caused her to stare at Aaron……with a smile, thankfully. 

Aaron really wanted Gary to listen to his Ronnie Milsap CD in the car player, but we told Aaron no, that he needed to use his own player.  Gary told Aaron that he just doesn’t like to listen to music while he drives, which Aaron finds totally mystifying. 

“How come you just like listening to the cars?!” Aaron asked in disbelief.

It was a welcome sight to see more and more mountains as we drove toward our beautiful Smoky Mountains, and to our family.  Aaron wasn’t greatly impressed with the pretty views of mountains and lakes and rolling whitewater rivers.  He just wanted to know what time we were getting to Aunt Sandra’s and what was for supper.

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Aaron quickly set up shop at Aunt Sandra’s, putting his CD and DVD player on the desk in the room where he sleeps.   His Ronnie Milsap CD and his Superman movies were nearby, and he was all set. 

On Saturday, Sandra took us up to see a friend who raises goats and dogs and cows.  The goats were just so cute.  Georgianna let Aaron pet and feed the goats, which he loved doing.  He really loves to feed animals……of course!  It’s food!  We ate lunch at Nabor’s drive-in, which we always must do in Bryson City……and which IS a restaurant, so Aaron was happy!  We drove around and looked at sights and gorgeous views, ending up at the grocery store……..where Aaron ended up finding DVD’s for sale, of course!!

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It was just great to see everyone over the next few days!  There were so many family members there, especially at the barbecue on Sunday.  During the days that we were there, Aaron had lots of new people to talk to about movies or about his day group or about anything else that entered his mind.  He didn’t know many names but he would usually just look at someone and say, “HEY!”  I would often tell Aaron the name of the person to whom he spoke, but names didn’t matter nearly as much to Aaron as the telling of his stories did.  So “HEY!!” it often was.

There were some moments of frustration, as there always are, but generally Aaron did very well.  To be in such a crowded environment with many people he didn’t know, totally out of his routine, is always a stretch for Aaron.  I think the time he got the most bothered, of all things, was the night that he heard Sandra and I making the noise that means something tastes good.  You know…….mmm, mmm, mmm, mmm, mmm.  The inflections in that common sound we make without even thinking just drove Aaron nuts.  He told us to stop it!  And we forgot as we stood at her kitchen island that night, sampling a few more little bites of her carrot cake.  “Mmm, mmm, mmm, mmm, mmm,” we both intoned as we smacked our lips……and there stood Aaron.  He had fire in his eyes as he got very upset, told us we were weird, and then gave me a kick in my leg.  It’s just amazing to see how his brain functions, and to see what makes him totally lose control. 

One of the sweetest moments came when Aaron began to tell his cousin, Andrew, about Ronnie Milsap.  Andrew, bless his heart, got out his phone and tried to look up Ronnie Milsap while Aaron anxiously waited.  Andrew’s phone didn’t get good coverage, so I quickly found the song.  Andrew listened intently with Aaron, while Aaron rubbed his hands together in delight and laughed a lot in total pleasure.  And to top it off, Andrew went up to Sandra’s house so that Aaron could show him some more Ronnie Milsap songs on his CD player.  What a kind thing for Andrew to do!! 

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We visited Aaron’s Nana, Leo, on Monday morning before leaving town.  We also got to see Jonni and JD, and of course, Meshach……who sat in Aaron’s lap the entire visit and even wanted to leave in the car with Aaron. 

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The trip back to Kansas on Monday and Tuesday was uneventful.  Of course, Aaron had the usual food questions and where are we staying questions and when will we get to Kansas questions.  On Tuesday he wanted to know what time we would get home.  Gary told him that we would get home around 4:00 that afternoon.  As we rode, we showed him when we entered Tennessee, when we entered Kentucky, etc. 

“Is 4:00 when we come to the entrance of Kansas?” he later asked. 

Later, we were on the final leg of our trip.  It was 3:09.

“When will we be home?” Aaron asked.

“In about an hour,” I told him.

“No.  You said 4:00,” he replied.

“What time is it?” Gary asked him.

“3:09,” Aaron answered.

“Then it’s about an hour,” Gary said.

“No,” Aaron answered.  “It’s 51 minutes.” 

I don’t think Aaron even notices the quick looks between Gary and me, and the suppressed smiles.  He is so often unaware of how he affects us in a very pleasing, happy, amazing way.  He does usually know when he affects us negatively, however, but I’m thankful that the happy times occur more often than the not-so-happy times.

He went to his day group today with no problem.  That’s a huge big deal for him after being gone for so many days!  He wanted me to come in with him and tell Barb about our trip, but I told him I didn’t have time for a long talk, and Barb probably didn’t either.

“But Mom, you don’t have to tell her for a LONG time!!” he insisted.

Yet I have told all of you for a LONG time about our vacation trip, that’s for sure.  Thanks for bearing with me if you’ve read all of this.  I just love sharing a little about what it’s like to travel with Aaron……to live with Aaron……to experience new things with Aaron……to be in his world and have him in ours in the way that we have this past week. 

It’s just another glimpse into autism and into life with Aaron, which makes our lives full and rich and sometimes rather complicated.

But not boring.  Never boring. 

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