Category: Relationships

The Introduction

Sharing stories about Aaron is a good way to have insight into how Asperger’s Syndrome affects not only him, but all those who live and work with Aaron.  A key to surviving life with Aaron is to understand what makes him tick.  Then you can better function yourself, and not live in constant frustration or bewilderment.  Training and directing him is also accomplished with better results when you can get inside his head and realize just how and when to redirect, or when to wait it out. 

But then there are those times when you have no idea what is going on inside that head of Aaron’s until it’s out there for all the world to see and hear.

That scenario happens often with Aaron and us. 

We moved to Wichita (Goddard), Kansas in 1999 when Gary retired from the military and accepted a job here.  A couple years later we enrolled Aaron in a school here that offers training to high functioning special needs students.  This training prepares them, hopefully, for the job market upon graduation.  There were many great aspects of this school and its program, but it never was a good fit for Aaron.  

I’ll never forget the open house and parent night during Aaron’s first year.  The students were to accompany their parents into each of their classrooms and introduce us to their teachers.  The students were treated as adults and so were to address each teacher by their first name.  The evening was going very well and Aaron was doing a great job.  It was nice to meet each teacher and to see his new environment that he was to be a part of now. 

The evening was winding down and we had one more teacher to meet.  As we stood in the hallway, waiting for the family ahead of us to come out of the room, Aaron was beside himself with excitement.  When he’s excited he bends over and rubs his hands together, over and over.  He hadn’t acted this way with any of the other teachers and so we were perplexed at this behavior.  We tried to get him to calm down but to no avail.

Finally, the room was empty and we walked inside.  There stood his teacher, with a very pronounced spiked haircut.  Remember how Aaron is attracted to the unusual?  Well, Aaron thought that her hair was just that……very unusual.  Of course, Aaron had not shared anything with us about her hair.  If he had, then perhaps we could have averted what happened next.  

Aaron quickly walked over to her, rubbing his hands together, and said, “Mom and Dad, this is Cindy (name changed).  She looks like a hedgehog, doesn’t she?!”  

Oh.  My.  Goodness.  Time stood still.  We were horrified.  Aaron was delighted.  Cindy was unhappy.

I’m surprised that I’m still living, as many times as Aaron has caused my heart to nearly stop. 

Her reaction told us that things would not be easy for Aaron in this school.   I’ll just say that it was a very long two years. 

But Aaron did LOVE that haircut! 

For the whole two years.

Trust me.

The Picture We Leave

Today I have found myself, several times, with tears in my eyes.  We all have days where emotions are close to the surface, don’t we?  Maybe it was the very, very touching video I watched today of how some boys reached out to their neighbor who was their age and in a wheelchair.  If Aaron hadn’t been with me, I would have cried much more after watching that clip than I allowed myself to cry.

Maybe I was teary today because of stories I’ve seen of others who are bearing sorrows and pains of this life.  Some hit close to home when the stories are from ones I know and love. 

Maybe I was feeling vulnerable today because Aaron had a small but hard seizure very early Sunday morning.  He was fine all day yesterday, but threw up last night.  A bug?  Or the amount of pizza he ate for lunch?  He stayed home today, not feeling too great yet, and had another seizure this afternoon…..a hard, three minute seizure.  My already raw emotions were knocked around even more during that seizure, which isn’t usual for me. 

I know, though, that the real reason for my unsteady emotions goes back to a picture in my mind…..a snap shot of Aaron on Friday afternoon, in Subway.  Aaron wanted a sub for his special Friday supper.  I always hope that there won’t be anyone in front of us because subs take a while to fix…..and Aaron is usually talkative, loudly, with me never knowing what he will decide to discuss there for everyone to hear. 

As we pulled in and parked, though, I saw that there were several cars in the parking lot.  A young family was walking in just before us.  Dad and Mom were each holding a young daughter.  There were others in front of them.  I asked Aaron if he was sure he didn’t want a pizza instead, but of course Aaron’s heart was set on a sub. 

As we stood behind the young family, the little girl that was being held by the dad caught Aaron’s attention.  I looked over and saw that Aaron was looking at her, and then leaned around him a little to see that he was holding his hand up.  He was showing her his favorite thing……the peace sign.  She wasn’t sure what to make of that, or make of Aaron.  She may have been three or four years old, and so I’m sure that Aaron’s peace sign meant nothing to her. 

It really was funny……Aaron standing there holding the peace sign steady, with a very serious look on his face.  No smile for the little girl……no emotion……no explanation.  Just somber Aaron doing all he knew to do…..spread some peace, thankfully.

The little girl thought that maybe Aaron wanted to play peek-a-boo, but Aaron didn’t cooperate.  He was just a statue, with a peace sign displayed.  So I played peek-a-boo with her as she tried to hide behind her dad’s shoulder.  Aaron was still in peace mode. 

But then, while I was immersed in this cute little girl’s smiles, Aaron quickly unzipped his wallet.  Before I knew what he was doing, he was holding his open palm out for the dad to see.  And in Aaron’s open palm was the rest of his money left over from his day at Paradigm.  Three cents.  Aaron was trying to give this young dad his money…….all three cents……but a fortune to Aaron. 

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Aaron loves to give things to people.  He really loves giving money away to others.  So he had decided to give this dad his money to help him pay for their dinner.  I knew all this in the split second it took me to see what Aaron was doing……and to also see that this young dad was completely uncomfortable with what was happening.

The dad was looking down into Aaron’s palm but he didn’t say a word.  I thought for sure that he would thank Aaron for the offer but then tell him to keep his money.  I thought he would look at Aaron and smile and be kind to special Aaron.  But no, he just looked at Aaron’s three cents and kept looking down, not making eye contact and not saying a single word. 

It was so awkward and so sad……and honestly, pretty hurtful to me.  I doubt that this young man had any idea that it was hurtful.  He was just clueless about what to do.  I find that amazing, though.  A kind word, a look in Aaron’s eyes, a thank you, should not have been that hard to do.  Right after that, this dad moved away from Aaron and then eventually went with his little girls to sit in a booth while his wife ordered.  I don’t know if it was because of Aaron or not.  But he sure did miss a great opportunity to show Aaron some kindness, like Aaron was showing to him. 

But it’s made me also think of another quite opposite experience that we had when we were home in West Virginia for Thanksgiving.  We had recently gotten Aaron a Nintendo 3DS game for his birthday.  We let him play it at our family gathering, which wasn’t the best idea because it was all he wanted to do.

Anyway, when the time together was wrapping up, the sweetest thing happened.  Young Moira……granddaughter of my cousin Jim and his wife, Patti……daughter of Kat and Farman……walked over to Aaron.  She said hi to him and then she asked him about the game he was playing.  She asked what it was called and wondered if it was fun.

I held my breath for a second, hoping that Aaron would be nice in return.  And he was!  He was really happy that someone had asked about his game.  He told her what it was and then he actually asked her if she wanted to see it. 

Moira said yes, and Aaron very proudly opened his game and let her play it for a few minutes.  It was so sweet!  I was glad I captured some pictures.

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Moira is being raised well.  She wanted to engage Aaron, you could tell.  She thought that asking about his game would be a good way to do that…..and it certainly was! 

But more importantly, Moira showed that she has a heart for others……especially others on the outside.  What maturity, way beyond her years!  That simple interchange meant more to me, and to Aaron, than Moira knows.  Or maybe she does know.  Ones with that kind of heart often do.

All of us can take a minute to follow Moira’s example…..to look every day for ways to love and bless someone around us.  And even if it pulls us out of our comfort zone, like the young dad in Subway, a simple smile and a kind word is all anyone needs to see and hear.

So thank you, Moira.  I haven’t forgotten your sweet heart that you showed to Aaron.  And on a day like today, when my heart is tender, I can choose to see your picture that makes me happy instead of the other one that causes me some hurt. 

Remember, we are all leaving a picture in the minds of others that we meet.  Let’s make it a good one. 

 

How Aaron Rolls

Aaron and I had a day together on Thursday.  It was a day full of things that he loves…..pizza, buying a DVD, going to see a movie, watching Wheel of Fortune, and a back tickling session before bed.  Oh, and a doctor visit first thing…..which is the most important thing, but only to me.  That is definitely not the most important thing to Aaron.

We were having Aaron’s first visit with his new Epileptologist.  That’s a mouthful!  At least his name is easy…..Dr. Lee.  I never know if a new doctor is one that we will like and trust.  I also never know if a new doctor will like and understand Aaron, which is nearly as crucial in Aaron’s treatment – in my opinion – as his knowledge of medicine.

Aaron was his usual impatient self in the waiting room.  Aaron doesn’t tolerate waiting very well.  We should change the name of the room to the sighing room…..or the grumbling room…..or the impatient room.  And don’t think that Aaron doesn’t notice who came after us but is called before us!  Observant Aaron indeed notices, and indeed doesn’t care for my reasonable explanations.  This is one reason I carry a supply of mints in my purse.  They help a tiny bit to ease the pain of waiting, for Aaron and for me.

A nurse called us in, a new nurse to us.  We missed you, Jen, if you read this!  Aaron sighed as he passed her, and he sighed as he stood on the scales……after removing his shoes, of course!

“I’m tired,” he grumbled.  He wasn’t even particularly excited to see that he had lost some weight.  Why is weight loss wasted on the unappreciative, I wonder?

Aaron got up on the table and promptly lay down, but I promptly told him he had to sit up for his blood pressure check.  Watching him sit up was quite a sight for new nurse, with Aaron nearly rolling off the table……new nurse trying to help him sit……and him finally sitting upright after a few kicks of his legs.  Wow!

New nurse and I were filling in the blanks about Aaron’s meds and doses, and of course Aaron plopped back down on the exam table.  Now I was sighing.

New nurse left and soon in walked a young medical student.  He had questions of his own, some of which he asked me and some of which were unspoken but were written all over his face as his eyes darted off and on to Aaron.  He was kind, but young and inexperienced, I imagine, in the ways of special ones like Aaron.  It’s so interesting to me, and actually amusing, to see the looks on the faces of those who are trying to decipher Aaron.

By this time, Aaron was totally comfortable on the exam table.  This is how Aaron rolls.

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Medical student left, and soon Dr. Lee knocked softly and entered the room.  Medical student was with him.  Dr. Lee was instantly comfortable with Aaron, shaking Aaron’s hand as Aaron rested on the table and then shaking mine.  I knew right away, as we first spoke, that I liked him.  He was thorough, knowledgeable, in charge but in a soft way, and very good with Aaron.  He even did Aaron’s exam while Aaron remained in his prone position.   He went over lots of Aaron’s past history, and had a plan for future treatment as we talked.  But nothing new will happen until Aaron has a video EEG in June, which will require a hospital stay of several days while Aaron hopefully has some seizures after meds are removed.  Stressful, but a necessary and needed way to see what’s going on in Aaron’s brain now as compared to his last video EEG years ago.

Aaron was happy to finally struggle up and off the exam table, get on the elevator, in the van, and go to Sam’s for a quick pizza lunch.  Home to let the dog out, a run into CD Tradepost for his DVD, and finally we were at the theater.  We were finally going to see Rogue One!

I paid for our tickets, with Aaron standing close and observing everything carefully.  As I signed the receipt, I noticed that the girl behind the counter was having a bit of a struggle with our tickets.  She was holding one ticket, but seemed to be tugging on something under the counter where our other ticket should have been printed.  Soon she was on her knees, working on the ticket machine, I guessed.

“Sorry,” she said as her eyes peeked over the counter.  “My machine isn’t working.  It’s actually totally stopped.”

It did not escape Aaron’s attention that Mom was holding only one ticket.  His mind was calculating the fact that we needed TWO tickets.

“You mean we can’t go to the MOVIE??!!” he asked in a panic.

The girl assured him that we could go.  She was in the middle of calling the ticket taker on her walkie talkie to explain things.

“We can’t go to the MOVIE?!!” Aaron asked again.  And I scooped up my receipt and my ticket……ONE ticket……as I thanked the girl and turned to leave, taking Aaron’s arm as I wondered why this had to happen to us, of all people.  To Aaron, who must have everything just right……and a jammed, turned off ticket machine is anything but just right!

We walked toward the second most anticipated feature…..POPCORN!!  All the while, I was explaining to Aaron that all was well…..that we could go to the movie…..that the ticket taker knew we had both paid.

“But you only have ONE ticket!” Aaron argued.

I explained again as we stood in line.  It was a fairly long line for a school day, I thought.  And so did Aaron, who proceeded to sigh again.

“So we can both go to the movie?” he queried as we waited our turn.

I told him yes, very thankful that a second line opened.

“CAN I HAVE A LARGE POPCORN??” Aaron bellowed as we stepped up to the counter.  There was that look on the young man’s face, so I smiled and put him at ease.  Aaron was not going to jump over the counter, I wanted to tell him.

“So we can go to the movie?” I heard Aaron ask again as I juggled our popcorn order, cups of water, Aaron getting straws, and Aaron getting a HUGE wad of napkins.  HUGE!!!  Why does he always do that?!!  How many other people saw that?!

But that’s how Aaron rolls.  It’s like napkins are a security to him.

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He was super happy that we both made it through the ticket taker matter, and that our theater was only a short walk away.   I was super happy to see only two other people in the theater.  And VERY SUPER happy that we got the seats on the very back row, with the wall behind us.  Aaron could stretch, and make minor noises without disturbing anybody.  He couldn’t kick seats in front of him, or pull on them if he got up or got excited.

We sat down.  I exhaled, leaned back, and totally relaxed.  Only three more people came in, for a grand total of seven movie goers on this day.  Another reason to relax.

But Aaron was not sitting back.  He was not totally relaxed.  He had placed his popcorn on the floor, not to be picked up and eaten until the movie actually started.  Not when the lights dimmed.  Not when the movie instructions about talking, cell phones, etc., started.  Not when the movie trailers began.  Only when the Rogue One movie was actually and for real on the big screen would Aaron pick up his popcorn and start eating.

In the meantime…..

As soon as we sat down………popcorn placed on the floor………napkins squished in one cup holder……..water in the other cup holder…..Aaron pushed up his shirt sleeve in order to see his watch, which is always pushed halfway to his elbow.

“It’s 2:02,” he said.

“OK,” I answered in my relaxed mood.

“When it’s 2:02,” he asked, “does that mean it will start soon?”

I knew we were in the countdown.

“It won’t be long,” I assured him.  “It starts at 2:15.  So how many minutes is that?” I asked him.

“Thirteen minutes,” he flatly answered.

We sat there in blessed quietness, me continuing to relax.

Aaron pushed his shirt sleeve up again.

“It’s 2:04,” he informed me.

I just shook my relaxed head.

And munched popcorn…….because I have no strict rules about the proper popcorn eating time.

Soon, the sleeve pushing happened again.

“It’s 2:10,” I heard in my relaxed state.

I guess it was 2:15 when the lights dimmed and the announcements started and the trailers played and all the other stuff happened on the screen.

The movie started, FINALLY, and Aaron promptly reached down for his popcorn.  It was only then that he leaned back, partially, and ate to his heart’s content.

I only had to hush Aaron a few times, and try to answer questions a lot of times, and wonder why Aaron was so obsessed over whether Luke was in this movie!!

“Where’s Luke?”

“Is that Luke?”

“Maybe he’s Luke?”

“Will we see Luke later?”

I am THE most uneducated person to ask about Star Wars, but Aaron will ask anyway.

But it’s OK.  We were on the back row, all relaxed…..with popcorn…..and a wad of napkins……and water to slurp with his straw……which is how Aaron rolls.

Actually, I’ve learned to roll with Aaron in most situations, relaxed or not.  That’s because Aaron is going to roll the way Aaron rolls, and usually there isn’t a lot I can do about it.

May as well roll with it, and smile, and enjoy the ride with Aaron……Aaron’s way.

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Some Best Gifts

Tomorrow is Valentine’s Day.  It’s nice to have a day to declare our love for the people in our lives that mean a lot to us.  I’ll admit that I have loved every flower and card and box of candy that Gary has given me over the years.  But in the past few days, I’ve once again seen that the best gifts my husband gives is what he gives of himself, over and over and over, as we walk this life road together with our Aaron. 

Gary and I love Aaron.  We have chosen at this point in our lives to keep Aaron at home with us.  It’s not always easy, but we wouldn’t have it any other way.  However, there are two attitudes that help tremendously as we care for our son.  The first one is humor.

I’ll be honest and say that I like it when I pick Aaron up from his day group, and hear him say, “WHEW!!  I’m stuffed!!”  He then tells me what he ate for lunch that day, usually something on the large side.  So I casually ask if he wants supper and he often says no. 

Now, I don’t mean to sound mean, but Gary and I do enjoy eating dinner alone.  Just the two of us, enjoying casual conversation and pauses of quietness……blessed quietness.  Because if Aaron is with us, he loves to talk about his day and his recent activities and what he ate and what he said and how he was just teasing this person and how he got in trouble and what movie he’s watching and what aliens he’s interested in and what game he’s playing, etc., etc.  He watches for the slightest pause in Gary’s and my conversation, or maybe not even a pause at all, and will jump in quickly. 

“AND……guess WHAT?!!” he’ll interject.  And he’s off and running with another tale that he knows we MUST hear.  There is a time and a place for us to hear from Aaron, but we also enjoy each other’s company at least a few times a week.

The other night Aaron wasn’t planning to eat with us.  Gary came home to two place settings on the kitchen table.  We soon sat down to eat, just me and Gary, when we heard that all too familiar sound of Aaron’s heavy footsteps on the stairs.  How does he do that?  How does he just KNOW that we are sitting down to eat? 

Gary asked the blessing as we held hands, with Aaron hovering there between us.  As soon as the “Amen” was said, Aaron launched in.  “DAD, guess what?!”

“Aaron,” I interrupted.  “I thought you said you weren’t going to eat.”

“I’m not,” he replied.  “DAD, guess what?!”

So there we were, Aaron’s captive audience.  It’s always a struggle for us to know how blunt to be with Aaron.  We don’t want to make him feel like he’s not wanted with us.  But, really, we didn’t want him to stand there the whole meal and talk up a storm……and he would.  He was well on his way to doing just that. 

Finally I said, without terrible bluntness, “Aaron, now you’ve talked enough.  You need to let us eat.” 

“OK,” he said.  He walked over to the counter, picked up a pineapple that he noticed, and brought it over to us. 

“DAD!!  Look at this!!  Mom got a pineapple today!”

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In Aaron’s mind, he WAS letting us eat.  I didn’t want to be so blunt as to say, “AARON!!  QUIT TALKING!!”  So I told Aaron to let us eat, and he WAS letting us eat while he continued to talk.

Gary, also not wanting to be too blunt or hurtful to Aaron, looked at me and said, “Your clarification of your wishes would greatly enhance your desired results.”

Aaron had no idea what Gary was really saying.  Gary and I laughed and laughed, which made Aaron think that we loved what he was saying about pineapples……so he continued his talking while he let us eat, just like I had told him to do. 

Next to humor, patience is another important gift that Gary gives as we live with Aaron…..or he lives with us. 

Gary ordered two updated Star Wars games recently for Aaron’s computer.  He installed them for Aaron on Saturday.  Then came Gary’s strict instructions to Aaron about not changing settings or doing any other things to mess up what Gary had taken time to do.  We have lots of experience with Aaron doing just that.

Gary and I came home from church the next day to find Aaron telling his dad that something wasn’t right about the games.  Without even looking, Gary knew…..and he was right.  Aaron had tried to put some codes in or something…..it’s all Greek to me……and he had jumbled things up.  Gary had to sit down and re-do much of what he had just done the day before. 

It was a resounding GRRRRRRRRRRRRRR moment, for sure.  And Aaron knew it…..knew he had blown it and knew we were frustrated.

Aaron finally came in my room and said, “Nobody forgives me!”  Can we spell the word D-R-A-M-A?

The game was eventually back up and running.  Gary had slipped outside to take Jackson, our Dane, for a walk.  The walk was, I’m sure, doing more good for Gary than for the dog. 

Enter Aaron……into the kitchen, looking for Gary.  Gary, who was nowhere to be found.  Aaron asked me and I couldn’t lie, so with resolute steps Aaron was out the back door and striding across the grass to catch up to Gary and Jackson.  I felt badly for Gary.  I knew he wanted some alone time. 

Soon I looked out the window, watching them come from behind the tall evergreens into my view.  They walked slowly, Gary and Aaron, with Gary talking and engaging with Aaron.  It warmed my heart, as I am quite sure it did Aaron’s as well. 

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Gary’s love for Aaron is a great gift to me.  His humor and patience often come at times that we both need them the most.  Often when I am tired…..done…..ready to check out emotionally……Gary will step in and save the day for me.  Those are some of the very best gifts that he gives me, and they’re not just on one special day or two a year. 

Of course, I do still love flowers……just in case he reads this, you know.   🙂

 

 

 

Taking the Bags Out

We’ve been very encouraged lately to see Aaron in mostly good moods at his day group, Paradigm.  He had some very discouraging struggles over the last few months of 2016, but now it’s like he’s turned over a new leaf.  We certainly pray that it lasts.  Perfection?  No, of course not, but he’s been far happier than he’s been in a long time. 

Honestly, one reason may be that we did reluctantly increase one of his drugs he takes for his autistic behaviors.  I think it has helped to calm him.  With this increased calmness, then, has come the ability to relate better to the people in his surroundings. 

Aaron loves helping.  He would rather be out somewhere helping with shopping or errands at his day group than to go on most of their activities.  The smaller group is more suited to Aaron, but the helping itself also does something for his ego, too…..in a positive way. 

We’ve been praising him for helping Amy, who works at Paradigm, with shopping at Sam’s or WalMart for Paradigm supplies.  We praise him for helping Brandy or Barb with work at one of the Paradigm residential settings.  Aaron, like any of us, thrives when he is commended.  And for all of us, it’s wonderful to be praising Aaron rather than to be fussing at Aaron. 

His personal relationships with Paradigm clients have been mostly better lately, as well.  Take his friend, A, for instance.  She is usually Aaron’s nemesis, and he hers. There is much bad blood between them.  But this week Aaron had a taco that came with his meal from Taco Bueno……and he gave it to A!!  Today Barb sent me a picture of Aaron hugging A!!! 

All which goes to show that when Aaron is happy, everybody is happy!

Getting Aaron happy, though, can be tricky.

And there’s something else.  Getting Aaron happy first thing in the morning can be virtually impossible.  That’s why this morning was such a shock, and worthy of a blog.

It started last night, when Aaron saw me carrying two pink AMVETS donation bags down to our guest bedroom.  He asked what I was doing, so I told him that I was preparing donation bags for AMVETS. 

“I’ll carry them out for you!” he enthusiastically offered.  But I thanked him and then told him that I wouldn’t be taking the bags out until morning.

“What time are you taking them out?” he asked.

“I don’t know,” I answered.  “Just sometime in the morning.”

Aaron lingered. 

“What time?” he asked again.

“I don’t know an exact time,” I replied, knowing how Aaron loves exact times.

More lingering.

“What time?” he patiently repeated.

I knew that Aaron would need an exact time or he would go to bed still asking me what time I was carrying AMVET bags outside!!

“OK,” I said.  “Probably around 7:45.”

“So, 7:45,” Aaron confirmed.

“Well, maybe not EXACTLY 7:45,” I said, “but sometime around there.”

I was sitting at the kitchen table this morning.  7:45 had come and gone.  I hadn’t taken the bags out yet.  I heard Aaron on the monitor, up in his bedroom, stirring and then getting out of bed.  Before long, he came down the stairs and into the kitchen.  I looked up and saw right away that he had put on his tennis shoes, still wearing his pajamas, and I knew right away why.

“Mom?” he asked first thing.  “Have you taken the bags out?”

“No,” I said with a smile.  “But let’s do it right now.”

Aaron, who usually isn’t very chipper in the mornings and likes to talk about how he doesn’t feel well, turned and put on his jacket.  Then he followed me happily to the guest bedroom, took two bags, and carried them out to the end of the driveway.  He came back and carried a small table out for me.  Then we were done and Aaron went about the rest of his morning. 

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I was pretty amazed.  I thanked Aaron, but not in a way that was too exuberant.  Aaron doesn’t like excessive exuberance.  He can be excessively exuberant, but no one else usually can.  We’ve learned this about Aaron.

I’m a realist, born of experience with Aaron. But I am, at the moment, a very happy realist.  I pray that Aaron continues down this helpful path, learning how much fun it is to be needed.  We all love being needed, don’t we?

Aaron really is no different than the rest of us, despite his glaring differences that at times show outwardly.  His heart desires praise and love and usefulness, just like mine.

He also desires…..eating out. 

I think I’m seeing a Friday night plan taking shape.   

Be My Valentine

Aaron climbed in the van this afternoon when I picked him up from his day group.  I talked to Katie, his staff, about his day…..which she said was excellent, with Aaron being kind and funny.  What awesome news!!

Aaron was settling into his seat and buckling his seat belt as Katie and I finished talking.  I had noticed that he walked to the van carrying two things in his hand, so before I drove away I looked down at the two items that he had placed between our seats. 

“What are those things?” I asked him.

“Well,” he replied as he held up a cup.  “K asked if I would be her Valentine, so she gave me this.”

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K is a client, one that Aaron doesn’t see a lot, I don’t believe.  But I guess she wants to be Aaron’s Valentine, so she hopefully sealed the deal with this gift.  It made me smile.  But it was the next thing that I saw that had me laughing.

The list.  She wrote a list for her new Valentine.  You know, just to give him a few gift ideas so he could seal his end of the deal.

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This girl has been schooled, let me tell you!!  HaHaHa!!

And good old Aaron, who loves to give and to share, asked if he could give those gifts to K.  I explained, as we drove home, why these gifts were out of the question.  Aaron was disappointed, and surprised, that he couldn’t buy K what she wanted.

At supper, Aaron showed Gary his gift from K, which made him smile.  And then he showed Gary the gift list, which made Gary laugh out loud just as I did.  Aaron was stoic, still disappointed at our reactions. 

“You mean I can’t get her those gifts?” Aaron asked with a straight face.

“No, Aaron,” Gary replied.  “You don’t have that kind of money for all those expensive gifts.  Why, even your mother wouldn’t expect to get those kinds of gifts.”

Wait.

What did Gary say?!!

Why is he laughing?!!

🙂  🙂

I’m Trying to Go HAPPY!!

Aaron and I sat down to play Skip-Bo the other night.  It’s a familiar nighttime routine for us on many days, this game of Skip-Bo.  As Aaron came to the table, I saw that he was carrying two bowls.  One was empty, and the other was full of Tootsie Rolls.  These Tootsie Rolls had been a sweet surprise from our friends, Jim and Joyce, this past Sunday.  Aaron was very happy to have been given such a huge bag of Tootsie Rolls, trust me!

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As we sat down to play Skip-Bo, while I was shuffling the cards, Aaron began unwrapping a Tootsie Roll.  He carefully took off the wrapper, and I then learned the purpose of his second bowl, the empty one.  He placed the Tootsie Roll wrapper into the empty bowl.  Soon he was ready for his second piece of candy, so he once again pulled on the wrapped Tootsie Roll, removed the paper, and carefully placed it alongside the first wrapper in the proper bowl. 

If there was ever a picture of how Aaron organizes his life, it would be in his use of multiple bowls.  I have blogged about this in the past, especially this piece from a few years ago.  It so fully explains Aaron’s use of bowls.  Put That in a Bowl!!

So as I watched him eat his Tootsie Rolls while we played Skip-Bo, I was once again reminded of how Aaron wants……no, he needs……his life to be just a certain way.  We all do that to some extent, but for an individual with autism, those needs are ever more acute.  The smallest disruption in routine and expectations can totally pull the rug out from under Aaron. 

Providing some fluctuations in his day and in his life can actually be very good for Aaron.  Finding the balance, though, is tricky.  Giving him consistency while also guiding him through changes can be very challenging for him, and definitely so for all of us who are a part of his life.

The staff at Paradigm can most assuredly attest to this fact.  They endure changing Aaron more than anyone.  Aaron can be very up and he can be very down at his day group.  Sometimes we see and know the triggers, and sometimes we don’t.  They have seen the good, the bad, and the ugly from Aaron during his nearly 11 years there. 

Aaron has been home this week with a bad cold.  He totally loves staying at home and would do so every day if we let him.  But like I said, Aaron needs to be away from routine and predictability in order to grow and to thrive.  He has friends at his day group and staff that he loves, but the atmosphere there is active and sometimes loud.  He can’t totally control his environment there……what people say or do……what activity he will participate in that day……how he will feel.  So for Aaron, staying home is much more preferred, but is not at all what he needs to do every day. 

He was well enough to return to Paradigm yesterday, on Friday.  I could tell he didn’t really want to go……didn’t want to think of leaving home for the day.  I was encouraging Aaron to keep a good attitude as I poured his morning coffee under his watchful eye.  He watches to make sure I do the coffee job JUST RIGHT!

“Mom,” he finally said.  “I’m not trying to go MAD!  I’m trying to go HAPPY!”

Wow!  His insights floor me sometimes.

He really wants to process life correctly.  Sometimes, however, it’s just a huge stretch for him to be able to do that. 

For Aaron, it’s Tootsie Rolls in one bowl and Tootsie Roll wrappers in another bowl.

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He can control this business of candy and candy wrappers.  He can’t control, though, his atmosphere at his day group.  Some days it’s just too much.  But we must gently push……must keep trying……must understand how hard it can be for him.

He had a great day yesterday at Paradigm.  They went to watch Rogue One at the theater.  Well, I’m not sure if it was a “great” day, but Katie told me that it was a good day……and to me, that’s great. 

Gary and I had Aaron with us at Sam’s on Monday.  I was checking out the asparagus when Aaron walked up to me with a bouquet of flowers, his face all smiles while Gary watched in the background.  Gary had pointed out the bin of flowers to Aaron, and Aaron instantly wanted to buy me some.  We’ve watched those Iris’s this week, some blooms falling off as they wilt while other buds burst into bloom.

Again, just like Aaron.  We wait for him to grow……hopefully to bloom……and in the mean time we enjoy him and his unique, colorful life that we see every day. 

Candy and wrappers…….buds and blooms……it’s all part of what makes life with Aaron both challenging and beautiful.   

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New Year, Old Ways

A new year is upon us!!  Welcome, 2017!

A fresh start can be so nice.  New everything.  Out with the old, right?  Well, not always, as I have seen on the past two days.  We all know that to be true.

I ended my old year on a most familiar note…..playing SkipBo with Aaron right before bed.  I guess that’s our version of a party, which suits Aaron perfectly as he really does NOT like parties.  Parties have too much noise and emotion for him, thank you very much.  But SkipBo with Mom is orderly, predictable, with nice piles of sequential numbers, and plenty of opportunity to cheat.  Yes, cheat, of which Aaron is a master if not watched closely.

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The next morning, our New Year morning, saw Aaron blandly staring at me as I very happily wished him a Happy New Year!!  His lack of expression at these moments is often hilarious, but I can’t always laugh because he finds that emotional expression irritating or he thinks I am laughing at him.  Which at times I am, but in a good way that he just wouldn’t understand.

Anyway, Aaron’s main concerns on our New Year morning were:

1)      Can I have FOUR cups of coffee?  (Don’t worry.  The cups are half full).

2)      Are there coupons in the newspaper for me to cut?

3)      What time are we going to Chili’s for lunch?

Aaron had opened a gift during our family Christmas Bingo game.  The gift was a Chili’s gift card that was burning a hole in…..well, in my wallet because I don’t dare give Aaron gift cards to keep.  They won’t keep with him.  They will be lost or given away.

I told Aaron that we would go to Chili’s after church.  He wanted to know the exact time, so I gave him my usual ball park figure and he was happy.  He was not so happy with the coupons in the paper for some reason.  Still slow from his cluster of seizures on Friday night, the coupons did not make him show his usual sense of purpose.  However, he settled in on the floor with his coupon trash cans as he sat on his coupon pillow with his coupon scissors…..and his FOUR cups of coffee on the bench nearby…..and he began to clip the coupons, very slowly.

I was in the bathroom later when Aaron came to the door.  “Mom,” he slowly began.  “I was cutting coupons but there were too much.”

Pause.

“OK,” I responded.

Pause.

“There were too much,” he repeated.

“Yes, there were a lot today,” I replied.

Pause.

“There were too much coupons,” he said again.

Pause.

“There were too much,” he once again asserted when he got no Mom reply.

Pause.  Sigh from me.

“Aaron, just take a break.  You can finish them later,” foolish Mom said.

Pause.

“I ripped them,” Aaron flatly replied.

Pause.  Another sigh from me.

I was following Aaron’s train of thought, one all too familiar.  He didn’t want me to cut those coupons.

“Because you don’t do them right,” he continued.  “You don’t cut them straight on the line like I do.”

He made his exit on that note.  No surprise from me.  It might be a New Year, but we are still living in our old ways…..always, always.

And sure enough, there on the family room floor lay his unfinished little stack of coupons……ripped, just like he said.  Aaron’s thinking has always been this…..that if he can’t cut the coupons, NO ONE will cut the coupons.  Especially Mom, who is a dismal failure at coupon cutting.

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Those ripped coupons were a stark reminder to me that just under the surface with Aaron there is always that issue of how he handles stress in his life.  He reacts, and often his reactions are very inappropriate.  His behaviors are a huge concern to us.  So I stood there being reminded that we were on our first day of a brand New Year, brand new beginnings, brand new opportunities……and here we were, being slapped into our old reality of life with Aaron.

Some things just never change.  We know that.

But there were other reminders of wonderful things that never change, either.  Gary and I finally got to church on time.  Yes, we were one of THOSE people who totally didn’t see the memo on the changed time for church……one of THOSE people who didn’t give New Year’s Day a second thought…..and so on this New Year’s morning we drove to church TWICE.  And we laughed at ourselves.  We’re HOW old?!

Anyway, we walked into church to the hugs and handshakes of sweet friends.  And there was Joyce, who handed me a bag containing a huge bag full of Tootsie Rolls…..for Aaron, because of my recent Tootsie Roll blog.  How unexpected and sweet, in more ways than one!  Later, Aaron was also surprised and full of smiles at this kind gift.

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The care of friends is unchanging in our lives.  Such a blessing!

The worship and the message on our New Year’s morning was encouraging and challenging.  And we sang one of my most favorite songs – Great is Thy Faithfulness.  What a wonderful reminder of God’s unchanging faithfulness in our lives!

And later, as we sat with Aaron at Chili’s, Gary and I watched him ever so slowly eat his enchilada lunch and his salad.  His joy at eating out was very evident.  Never changing, his love of restaurant food!  And seeing that joy is always fun for us, despite our constant reminders to him that he doesn’t need to take 17 toothpicks…..don’t stare at the other people and their food……don’t make noises…..don’t clap…..please don’t loudly stretch when you get out of the booth.

Never changing.

I was able to salvage a few coupons later from the ripped pages.  I didn’t let Aaron see me as I quickly cut them out behind his back.  And I know that we will continue to try to salvage good out of the bad days that Aaron will surely have this year.  It’s our reality with Aaron, New Year or not.

But through it all I know, like that favorite old hymn says, that God will remain the same, too.  Faithful to us, as always.

 

            Great is Thy faithfulness, O God my Father,

            There is no shadow of turning with Thee;

            Thou changest not, Thy compassions they fail not;

            As Thou hast been, Thou forever wilt be.

 

            Great is Thy faithfulness!  Great is Thy faithfulness!

            Morning by morning new mercies I see.

            All I have needed, Thy hand hath provided.

            Great is Thy faithfulness, Lord unto me.

 

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Have a Tootsie Roll!

My writing about life with Aaron has taken a back seat lately.  Actually, more like the back car on a very long train.  Traveling over Thanksgiving and then returning to the mad rush of Christmas preparations have certainly been major factors.  But there’s more to it than that.

I feel overshadowed.  Living under a dark cloud of Aaron issues.  Increased seizures…..medicine decisions……doctor visits.  But even heavier than those concerns are the disruptions caused by his behaviors, which honestly have at times been far from nice.

Autism……family therapist…..psychiatrist……investigating alternative medical helps…….phone calls……meetings.  It can get overwhelming sometimes.  Keeping our cool can also be next to impossible, sometimes as impossible as understanding what makes Aaron tick.  But we must understand that Aaron operates with a very unique mindset, without most of the filters that others have, and that he is constantly bombarded with sounds and ideas and stimuli that you and I never have to handle.  His day group is a perfect breeding ground for noises and irritants and unusual people that can aggravate him quickly.  We rarely see the behaviors at home that they see there.  It can get messy.

Today I saw the side of Aaron that I wish he showed every day.  It’s there…..just sometimes not seen as vividly as I saw today.  Yeah, he got mad at a game this morning before we left for his dentist appointment.  But he and I had a good discussion about it as we drove to the dentist’s office, where he also relished discussing his angry experience with the office staff, and with anyone else who had ears.  He has no shame…..really.

As we left the dentist’s office, he gladly grabbed a cookie that was offered to him by the staff.  And Tootsie Rolls that were in a bowl.  Did he ever take Tootsie Rolls!  I had no idea.

He ate one or two in the car on the way to Pizza Hut for lunch.  The Pizza Hut buffet, heaven on earth for Aaron.  All You Can Eat…..anything…..is heaven on earth to Aaron.

As we left Pizza Hut, paying for our All You Can Eat buffet……where Aaron really didn’t get to eat all he could eat because Mom stopped him way too soon……

Anyway, as we left and were paying at the register, Aaron pulled out yet another Tootsie Roll from his pocket.  “Here,” he said to the smiling lady behind the counter.  She was smiling because Aaron had tried to hide from me while I was in the bathroom.  He was standing near the exit doors, peeking around the edge of the wall, grinning from ear to ear and then laughing loudly when I saw him.  All of this in full sight of a banquet room full of people who were supposed to be listening to a speaker, but who were instead looking at Aaron and me with grins on their faces.  Story of my life.

So Aaron pulled out the Tootsie Roll, handing it to the now laughing employee, and said, “Here.  Because I liked the food today.”

When does he never like the food today?

But she was so happy to get his Tootsie Roll!  She took it and thanked him, telling him that she loved Tootsie Rolls.  Aaron was super pleased at her reaction.

“Look!!” he loudly said.  “See how many I got at the dentist?!”

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Oh dear.  He pulled out a whole fist full of Tootsie Rolls.  All I could think about was the fact that the ladies in the dentist’s office probably saw him take that stash while my back was turned to Aaron.  When will I learn to never turn my back on Aaron when there are cookies or Tootsie Rolls involved?!

I gave him the “Don’t Be a Tootsie Roll Pig” lecture on our way to TJ Maxx, while he unwrapped Tootsie Rolls and enjoyed his free dessert.  He offered me one and I accepted, feeling like a hypocrite.  I stopped the lecture.  Shouldn’t talk with my mouth full.

We walked into TJ Maxx, where I told him that I was looking for a gift for Nora.  Nora is my little elderly friend that I take out once a week.  She was our neighbor for 15 years before moving to assisted living.  Aaron knows Nora.  Sometimes he’s been not so nice to her, but other times he’s tolerable.  Today he surprised me.

“Mom!!  I want to get Nora a Christmas gift!” he exclaimed.  “Here!!  I want to get her……this!!”  And he grabbed the first thing he spied, a Christmas candle holder that I knew Nora wouldn’t need or want.

Aaron’s desire to get Nora a gift just made me very happy, so I told him that we would look for something.  We were browsing in the perfume section when I heard Aaron talking to someone.

“Here!” he was saying.  I looked over to see him offering the employee manning the dressing room……you guessed it……a Tootsie Roll!!

This young lady looked a little uncomfortable as big Aaron held a Tootsie Roll out to her.  At first she declined his offer, but then for some reason she said yes.  She looked at me with a smile and at Aaron with a smile as she accepted the Tootsie Roll.  And Aaron laughed with delight as he bent over and rubbed his hands together, oblivious to shoppers who were looking and this new friend whose mind was full of questions, I’m sure.

It was really very, very sweet.  Sometimes in these moments it’s tempting for me to be too embarrassed to enjoy what just happened.  Today, though, I really relished what Aaron was doing.  I loved it!!  I loved how happy it made him to share with strangers.  And how happy these strangers were to have received such a spontaneous little gift from unusual Aaron.

Aaron had not forgotten that he wanted to buy a gift for Nora.  We looked here and we looked there, and finally I saw a perfect box of chocolates.

“YES!!” Aaron said when I showed him the box.  “Let’s get that!”

Later, at supper, Aaron had a thought.

“Mom?  Can Nora eat that chocolate?”

I told him she could…..that she loves chocolates.

“But does she have fake teeth?!”

I told him she does not have fake teeth as I tried not to laugh.

“Good!” he answered.  “I thought she might have fake teeth and couldn’t eat it.”

Aaron wants to give the gift of chocolates to Nora, in person.  I am quite sure that he will ask her if she has fake teeth.  She still hasn’t forgotten how he once said that she was old.

See what I mean?  No filters…..no shame.

But Aaron has a big heart.

Here.  Have another Tootsie Roll.

I need to give the dentist a bag of Tootsie Rolls at my next visit.

 

 

You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights.  Gary was already trying to go to sleep, and I wanted to do the same.  But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much. 

“AARON!!” I hissed.  “Why are you in our room?” 

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied.   “Now go to bed!”

Not long after, it happened again.  Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron.  Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm.  Another bad report this past Monday just took all the wind out of me.  Gary and I feel like nothing is working, but something has to make a difference.  We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying.  Praying a lot.

I was so thankful for the verse that God gave me this week.  The portion that meant so much to me was this phrase: 

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.”  (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us!  One of us gotta have some relief!!” 

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness.  But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room.  Soon he walked up to me and handed me one of his sticky notes.  Here is what he had written:

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Bless his heart.  He really wants to do better, but finding that better is very difficult for him in certain circumstances.  Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday. 

That verse God gave me early in the week was perfect.  We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways.  The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth.  In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened.  I was out with my little elderly friend, Nora, when I got a text.  This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago.  Dona and I rarely text, so I was surprised and a little alarmed to see her name appear.  I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with.  We briefly texted, with her telling me that I had just been on her heart and mind.  God at work, without a doubt.

I could hardly wait to get home and call her.  We talked for quite awhile.  She told me again that she kept thinking about me and so she prayed.  I love it when God does these things!  He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s.  We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt. 

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!!  He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!”  he boomed.  “I want to give you a rose!!  Because I love you!!”

And with that, he gave me the biggest hug!  I thought my heart would explode!

The love note…..the rose……the hug. 

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night.  BAM!!  There he is again, full of talk and excitement, no matter how tired we are. 

“Are you sure you want me gone?” he asks.  No, Aaron, not gone…..but resting.  Go rest, and let us do the same.

His behaviors can be so very tiring.  This past week has been emotionally exhausting for us, as well as physically.  We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone.  We just want him to be happy, and to know how to behave in a way that makes others happy, too.  We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief.  I know He’s listening…..I know He cares……I know He’ll answer.  He’s already impressed others to pray for us.  That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life.  One so often shows me the other. 

I just have to be making an effort to look sometimes. 

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