Aaron’s Tears

Let me say right from the beginning of this blog post that I am sorry for writing another sad Aaron story.  As if The Flip Side – my previous blog – wasn’t enough, here I go again.  But I promise to have happy stories and huge Aaron smiles coming up.  After all, Halloween is right around the corner and Aaron is nothing short of over-the-moon excited about all things Halloween and pumpkins and…for the first time ever (really!)…a costume that he cannot WAIT to wear!!

In my last blog I tried to explain the impact that Aaron’s obsessions have on his everyday life.  In true autistic fashion, he will become hyper-focused on something that soon controls his decisions and his emotions. 

Water, as in the drinking of water, is another of Aaron’s obsessions.  Years ago, our daughter told him that there was such a thing as drinking too much water.  She was right.  In 2015, Aaron ended up in the hospital.  He was incoherent and unable to walk.  His sodium was dangerously low.

Over the years we have attempted to control his water urges but it’s very difficult to do so with a grown man who is able to get his own water…and is very sneaky about hiding water bottles, especially at bedtime. 

Three weeks ago, after routine bloodwork, I got a call from his doctor informing us that Aaron’s sodium was low again.  Aaron did a great job of reducing his fluid intake and in only one week his levels were normal again.  We praised Aaron for the good work, and he was quite thrilled.

But water obsessions are like an addiction.  The urges for lots of water returned, along with our removing bottles from his room and threatening to lock the garage refrigerator with all the water bottles inside.  Gary and I hadn’t figured out what to do about the faucets or the fridge water dispenser.  Ugh!!

Aaron has been doing better the past few days, though, and so we can only hope that he is learning to control himself.  But this past Monday at his day group was rough.

Aaron got some coffee at QuikTrip, and it accidentally was kicked over by a friend.  It spilled all over the floor.  He had taken water with him that day, but decided he wanted a bottle of water that was inadvertently offered to him.  A staff reminded him that he couldn’t have more water.  All of this was just too much, and the tears came.

He was totally dejected.  A staff took this picture of him in her office.

At first I smiled, but then I zoomed in, and the look on his face…

Well, it broke my heart.  And then I was crying.

If there was ever a picture of Aaron’s deep frustrations, this is it.

But why do I share this? 

Because I want others to know that these fixations of Aaron’s…and of so many others with autism or other issues…are life changing for them and are not to be flippantly brushed aside with a, “Oh, just get over it, Aaron.”

He can’t “just get over it.”

He is so deeply affected by his own fixations.

My blogging friend, Nancy, commented on The Flip Side that I wrote last week. 

“Dear Aaron,” she wrote, “it must be SO frustrating to deal with uncontrollable urges.”

Her comment touched me so much because she acknowledged that Aaron’s urges…his obsessions…are truly uncontrollable.  And she expressed empathy for that side of Aaron because of how deeply impacting it is in his life. 

How frustrating it is for him.

And I know that if I can look at Aaron through eyes of understanding and compassion, then hopefully he will see and feel the fact that he is understood and loved. 

Easy?  No.  Especially in the heat of the moment, or late at night when I am carrying three water bottles out of his room while he loudly protests.

Yet again, though, Aaron has shown me how much I am this way with my heavenly Father.  How I let my obsessions for things that aren’t good for me control my thoughts and my actions.

The mercy and grace that God gives to me is exactly what I need to show to Aaron. 

I goof up and God is there to forgive and to instruct, and to patiently love me through the repercussions of my repeated actions.

 I must do the same for Aaron…forgiving and instructing and most importantly, loving him through the repercussions he might face.

And maybe look into a water sniffing dog, as well?  😊

The Flip Side

I’m old enough to remember 45 rpm records.  On one side there was the recording of a major hit, usually a #1 song.  But then there was the flip side.  The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song.  Everyone wanted to listen to and talk about the fun, well-known song.

I started writing about Aaron and our life with him over 10 years ago.  My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks.  I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism.  I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.

Yet there is a flip side, just like those 45 rpm records.  I have written about it many times over the years but don’t want to focus on the negative.  Just like the popular #1 song, it’s fun to hear the funny side of our life.  But that flip side is just as much a part of Aaron as the other preferred side.

Yesterday morning the song on the flip side was playing loud and clear at our house.  I didn’t turn Aaron’s record over.  Believe me, I far prefer that first side!  But turn over it did! 

For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control.  Some obsessions seem to be permanent, and others might come and go. 

One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession.  I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs.  It’s not going to happen.  And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.

During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat.  It has become THE highlight of Aaron’s day.  He is completely fixated on this fun, simple outing.  Often some of his friends go as well, which makes it even more fun for Aaron.

So, there is the obsession.

Now for the disruption.  A meeting. 

Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year. 

Aaron hates meetings.

The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch.  Aaron cares not about one word that is said at the meeting.  He is too busy eating yummy food and trying to monopolize the conversation. 

I had told Aaron that we were having a zoom conference on Wednesday morning at his day group.  I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.

But on that morning, nothing mattered but Quik Trip.  He was super angry before he even got out of bed.  Nothing I said helped him.  He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…

On and on and on he went, accelerating into yelling.  He broke his closet door.  He hated this meeting.  He hated me. 

Then he cried.  If Aaron cries, he is genuinely and deeply upset.

I texted Barb at Paradigm, who can calm Aaron like no other.  She facetimed with Aaron, and he started settling.

As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes.  In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”

Then tears filled my own eyes.  I was spent but I was so touched at his apology, especially since I had not asked for one. 

I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it.  😊

So why am I telling you all this? 

It’s not because I like talking about Aaron’s flip side.  But this is our reality, especially Aaron’s reality. 

And the reality for so many other families that I know. 

Seizures are hard.  Other health issues are hard.

But behaviors…they are in many ways the hardest.  What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.

And on the staff at all the places that also care for our special ones.  Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns.  I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff.  Being spit on and kicked is not pleasant yet these amazing people stay the course.

Seizures cause brain damage that worsen the situation.  Seizure meds compound the problems with side effects that include worsening behaviors. 

How complex these things are!

How life-altering for the families!

How we love Aaron! 

We hurt when he hurts.  We struggle when he struggles.  We mess up and need to ask his forgiveness, as well. 

We all need grace, God’s and each other’s.

I have to fill out this behavior chart about the whole hard ordeal.  Stats and records must be kept.

What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.

I wish I could check a box that explained his sadness at his own behavior.  One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.

I’m thankful that God knows and that He gives His grace for each day.

And thankful for our complex and amazing Aaron…both sides.

The Other Side

 Aaron recently had a tooth pulled and an implant inserted.  He’s really done well with the whole procedure and with healing, as far as we can tell.  But as is the case in every single tiny part of Aaron’s life, autism rules. 

I mean, come on, this is the guy who won’t get up from a program until he watches the credits.  Who, if he has multiple music CD’s from the same artist, will only play them in the order of their production date.  Who will not start eating his popcorn at the theater until the movie we came to watch has actually started.   Who lays his special greeting cards on the bed at night while he reads, just like this.

Who keeps a log book of the time he goes to bed every night and the time he gets up in the morning. 

And who…get this…will only chew on one side of his mouth.  And you can probably guess which side that is.  The side which had the extraction and implant, OF COURSE!!!

This was a huge reason that my stress level was so high as I thought about his recovery.  Gary and I have coached Aaron and encouraged Aaron and demonstrated to Aaron and pled with Aaron to please…just PLEASE…chew on the OTHER side of his mouth.

“I don’t LIKE chewing on that other side,” he asserted over and over.

“So start early and get used to it!” we declared.

“But I can’t TASTE on that other side,” he told us over and over.

Silly parents.

Thinking we could even remotely win this battle was as crazy as…well, as expecting Aaron to chew on the other side of his mouth.

For Aaron…for anyone with autism…there is basically no other side to any matter.  There is one side…one way…to do and to see everything. 

Things came to a head last Wednesday night.  I had fixed Chicken Fajita Soup.  Aaron had eaten and enjoyed this soup in the past, but that was before he was being tormented with all this tooth business.  He was unhappy with the soup.  He was unhappy with me for fixing the soup and for insisting that he eat some soup.  Aaron’s unhappy led to my unhappy. 

That was one side of the matter.  The other side is that Aaron was looking forward to going on our Meals on Wheels route the next day and finally getting to eat out.  We were going to his favorite Mexican restaurant to see his favorite server and eat some soft enchiladas and of course to scarf down a side salad with no croutons and with TWO ranch dressings!

But instead, he had two seizures in the early morning hours.  He stayed home with Gary while I went on our route.  I felt sad for Aaron, but honestly, I needed that alone time.  The previous night had been rough.  I had not gone through Aaron’s normal bedtime routine because I was just so tired on every level.  Instead, we simply said a quick goodnight and I sat at my desk reading some Psalms and praying. 

Those are the times that I do not feel the joy of being Aaron’s mother but instead feel overwhelmed with the burden of caregiving.

I could feel my burden being lightened as I delivered the meals to my elderly clients that morning.  I pulled up to a new client’s house.  It was only my second time to take R. a meal.  She slowly came to the door with her walker.  We talked for a minute and then she began to tell me about her husband who had died a few years earlier.  She had been his caregiver for years before his death.  I was able to share with her some things about Aaron, whom she remembered from the week before.  I felt a bond with her, this new little friend who smiled when I told her that she didn’t look like she was 91 years old.   But then she talked about how lonely she was, and how she felt like she had no purpose…that she just existed.  And I told her that she did have a purpose in God’s eyes and how she had just encouraged me.

I had to run on and deliver more meals.  When I went to C’s house, he immediately asked about Aaron.  He had some things to give to Aaron.  He handed me a plastic pumpkin that was loaded with stickers and rocks that he had painted with Aaron’s name, along with several other items.  I thanked him over and over, and he told me that this was his ministry now since he couldn’t get out like he used to do. 

I told him that his words reminded me of my visit with R…of how she felt useless and with no purpose, but how we all have a purpose in God’s eyes. 

“What’s her name?” he asked.  “I’ll paint her a rock!”

I told him her name and he spelled it to be sure he had it right.  Then he said that his aunt had that first name, and how she lived a few blocks over…that she was alone and was 91 years old.

“That sounds like my new client,” I told him.

He gave me his aunt’s last name. 

And wouldn’t you know it?  His aunt is the new client that I had just talked to, who is so lonely and sad.  He said he would call her and visit with her.

This was a sweet gift to me from God, this reaching down and orchestrating the encouragement that our three hearts needed. 

For R and C were not the only ones who needed that touch from God on that morning.  I needed it, too. 

Yes, I could walk and drive and later go out to eat with Aaron.  I got to go home to a loving husband and live in the purpose that God has given me at this point in my life.

But sometimes God’s purpose for me is not easy, yet it IS all too easy to chafe under the yoke instead of remembering that God has said His yoke is easy when I wear it for Him. 

That’s the other side of God.  He teaches us so much under the stresses and burdens of the lives we live. 

He equips us for the life He has planned for us.

And He surprises us with sweet blessings when, and how, we least expect it. 

Let’s Talk (And Talk and Talk) About Lettuce!

Aaron had an appointment with his autism doctor this past Monday morning.  Dr. Ogden, a psychiatrist, oversees the aspects of autism that are not very much fun.  This means that she wants to talk about Aaron’s feelings and behaviors.

However, Aaron does NOT want to talk about his feelings or behaviors.  Years ago, we tried counseling sessions and it was a royal failure…not because of the therapist but because Aaron wanted to control the conversation and make it all about his movies and games and things like showing her the bump on his chest. 

Aaron would rather be poked and prodded and stuck with needles than to sit on a couch with mom and Dr. Ogden while explaining why he gets angry at home or his day group…why he reacts to people and situations with hitting or verbal insults…and what the solutions may be to said behaviors.

Aaron woke up that morning angry and frustrated, which is not the best way to go see the doctor who wants to talk about his anger and frustration.  Rarely is Dr. Ogden treated to Aaron’s humor or brightness.  Rarely am I treated to such fun Aaron attributes either on Dr. Ogden days until the visit is over and done…and we go to lunch. 

Lunch is the ONLY reason Aaron endures these talking doctor visits.

Aaron went from livid to lively as we drove to BJ’s for lunch.

You might say that Aaron can surely control his moods if he does so in a situation such as this.

But with autism, things are flipped.  Aaron’s moods control him.  You and I can perhaps overcome the heavy mood that weighs us down on certain days, but Aaron’s heavy mood puts him on a track from which he cannot jump.  He is stuck until something else redirects him.

And on Monday, part of his mood changer was in the form of lettuce.

When Aaron finished his French fries and scooted his chicken tenders around, there on his plate lay a nice piece of leaf lettuce.

Aaron tenderly picked it up, as if he was slightly scared of it.

Look at his face!  😊

Then he set it on the table.

“I’ve never seen this lettuce,” he calmly remarked.

“What do you mean, you’ve never seen that lettuce?” I asked.

“Well, it’s green!” he answered.

“Green?” I questioned.

“Well,” he explained, “some is black and some is green and some is white.  You usually get white.”

Oh, the intrigue of mixing autism with being color blind!

I can totally see that he sees all those interesting colors of lettuce.  Once again, Aaron caused me to pause and consider concepts that I would ordinarily never think about.

Aaron then held up the lettuce as if he was displaying a prized conquest.

Then he stared at it as he placed it on his plate again, studying it in such a serious way that I had a very hard time not laughing out loud.

“I didn’t order lettuce with my chicken strips,” he observed.

I explained that the green lettuce was there more for decoration than anything, which he thought was rather odd.

“What flavor is the green?” he wondered.

 I had to laugh at that one.

“Ummm, lettuce just tastes like lettuce, Aaron,” I tried to explain.  “Why don’t you eat it?”

So, Aaron very bravely took a small bite.

Which led to more bites as he looked postitively scared.

And finally, the lettuce was gone. 

Aaron survived!

I thought we had exhausted everything lettuce related there at BJ’s.

But the next night, Aaron’s sharp eyes spotted lettuce in a commercial.  Of all the food items on the screen, Aaron saw a piece of LETTUCE!!

“MOM!!” he yelled.  “There’s the lettuce I had in BJ’s!!  The brown one!!”

BROWN!!??

Now we’re on to BROWN!?

NOOOOOO!!!

I’m making an appointment with Dr. Odgen…for ME!!!

Our Texas Trip – Part 1

I heard an old George Strait song yesterday that could have been Aaron’s theme song leading up to our trip to Texas.  The song is titled “I Hate Everything.”  And oh boy, did Aaron ever!

The night before we left saw us reeling under all Aaron’s verbal blows.  He was livid at having to go with us, far preferring that we hire a caregiver to watch him while Gary and I went alone.  We were definitely with him on that as the evening wore on and we were worn out. 

The next morning was no better.  Aaron didn’t like us, the trip, the car, the snacks we took, Texas, Andrea, Kyle, their dogs…nothing.  The only thing he liked was his idea of staying home and that was NOT going to happen, so we were stuck with lots of “not likes” and plenty of anger. 

“I hate this vacation!!” he declared as we drove down the interstate. 

Aaron does not enjoy leaving his room, his house, his routine, his bed…his normal.  These things are such a part of what makes Aaron function in his normal that the process of uprooting, even for just a week, is nearly more than he can bear. 

Aaron accepted his inevitable doom as we drove farther away from normal.  Gary and I left him to his games, his music, and his movies as we quietly recovered.  How draining it all was!  I texted and messaged friends and family to please pray.  What a comfort it was to know that we were being brought before the Lord!  I know that many of my fellow bloggers were also praying, and I thank you so much for that. 

We stopped a few hours down the road at our favorite Oklahoma City rest area.  And there Aaron found a cute little stuffed owl that we let him buy.  He rubbed his hands together in his happy way as we paid, and Gary and I felt like doing the same as we saw a lifting of Aaron’s anger.  A chocolate milkshake and onion rings from the nearby Sonic gave him further reason to smile. 

It’s a very long drive to Houston, and then even farther to Andrea and Kyle’s house in League City.  Aaron had lots of time to think about the upcoming week of change and uncertainty that he felt waited for him there.  We saw occasional outbursts from him about how he still didn’t like this vacation. 

Finally, there it was…the Houston skyline.

And not too long after, we were pulling into Kyle and Andrea’s driveway.  We could hear their 3 adorable dogs barking as we got out of the car.  Soon we were sharing hugs and doggie pats, settling our things in our rooms, and sitting down to the pizza that was waiting for us.

What a relief it was to see that Aaron was relaxed!  He had immediately given the dogs their treats and toys we had brought to them.  As we sat around the table, I was so touched to see the total attention that Kyle and Andrea paid to Aaron as he talked non-stop. 

That attention to whatever Aaron is saying is one of his major love languages.  The things he talks about can be mind-numbing to us but not to him.  Listening, commenting, answering his many questions…that means more to Aaron than we often stop to recognize.  But Kyle and Andrea know Aaron, and they love him, and they showed it by listening with great interest to his talk of…whatever it was he was saying.  😊

Later, as we were getting ready for bed, Aaron had me fill his water bottle that he keeps by his bed to drink while he reads a book before he goes to sleep.  Got that?  Because that little fact is very important.

I gave Aaron his pills while he was getting in bed.  Not having any other water, I told Aaron to just drink some of the water from that water bottle. 

“No!” Aaron told me.  “I can’t drink that water to take my pills.  That’s the water I drink while I’m reading in bed!”

I was so tired.  I sighed, and Aaron heard me.

“You don’t understand,” he said, with some anger returning.  “No one understands me!”

It was like some of that water splashed me in the face as I was hit with a fresh look into Aaron’s heart.  Try as we might, sometimes it truly is very hard to understand Aaron. 

Or maybe we understand on paper, when things are calm, but in the middle of the moment when we’re stressed it can be very hard to slow down, take a breath, step back, and see the world through Aaron’s eyes.  Feel it with his senses. 

This whole trip was like going to Mars for him in many ways. 

“Please, Mom,” it was like he was saying.  “Don’t also make me use my bedtime water bottle for taking my pills.  Don’t you understand?!”

My rising frustration was immediately replaced with empathy for this son of ours who didn’t ever ask to have autism.  But he does ask that we try to understand him as he lives with the rigidity that autism causes. 

Just understand.

Push aside my exhaustion, my frustration, my expectations – and simply give him a separate glass of water for pill taking.

What a gift that was to Aaron!

And to me as I once again saw him relax.  I knew that I, too, had spoken Aaron’s love language.

I have so much to tell you about our time in Texas.  It was the best trip ever for all of us!  I’ll share more later, hopefully soon, in my upcoming blogs.

Bless all of you for reading and for caring!  Good night and sweet dreams.

The Autism Two-Step

Gary and I are planning a trip to Houston next month.  We’ll stay with our daughter and son-in-law (Kyle and Andrea), and then get to see our other son (Andrew) who will be there for an NHRA race. 

Happy, happy fun times are ahead!  YAY, YAY!!

Wait.  I forgot to mention that we plan to take Aaron. 

Angry, angry times are ahead!  YUCK, YUCK!

That was Aaron speaking.

As many of you know, getting Aaron to travel happily is a stretch.  We want to include him for the obvious reasons, especially the fact that he IS family and should be a part of family times. 

We’ve been making the hard sell and thought we were well on our way to traveling success.  But yesterday morning…

Aaron stood behind me early as I sat at my quiet time desk. 

“I am NOT going to Andrea’s!!” he angrily spoke.

First words out of his mouth did not bode well.

None of my soft words softened him at all. 

I ended up on our patio, coffee in hand, where Aaron soon found me and exposited further on the reasons that he will NOT make this fun, fun trip.

I escaped in the house for a few minutes.  When I looked out at the patio, Aaron was gone.  I didn’t see him anywhere.  Where could he have gone?!

Soon I saw him, across the yard sitting all dejected on our bench.  Sorry for the grainy picture.

He soon moved to the front porch, sadness all over his posture and face. 

When he rejoined me on the patio, he was crying.  When Aaron cries, he is truly and deeply upset. 

“I don’t want to leave this house!” he exclaimed, as if we were forcing him out forever instead of just taking a trip.

But to Aaron, home and the familiarity it brings is of upmost importance to him.  It’s a huge stretch to ask him to go someplace else and just “be happy.”

Aaron reacts to all the stimulation outside of himself in a far greater way than you and I do.  A long trip, another house, an unfamiliar bed, more people around, a different bathroom…just everything about traveling is huge and very uncomfortable to him. 

And if Aaron is uncomfortable, then everyone within range of his voice will be most uncomfortable, too.

It’s so easy to say he should just go and have a good time.

SO, SO hard for Aaron to do that very thing, starting with the “just go.”

Later in the morning, like a light went on, Aaron calmed down and became happy.  It wasn’t because finally, he came to his senses!

It was because he remembered the Indonesian submarine that sank.  Really.  Not that the sinking and all the death makes him happy, but all the facts of that incident have filled his fact-loving cup to the brim.

He talked about the submarine incessantly on Sunday.  He talked about it until the moment he turned his light off that night and went to sleep.  So yesterday morning, when he paused from his travel grief long enough to think of something else, his mind went back to the submarine that had so consumed him yesterday.

Ahhhhh, a subject that pleased him, odd as that sounds! 

Autistic persons are often brought back to their comfort zones by slipping into whatever groove is safe to them and meets their unusual interests.  As strange as it seems to us, Aaron was able to lay aside his angst about our upcoming trip by finding that groove, which on this day was the sunken submarine…

And then Trandoshians…clones…launch codes…Republic Assault Ship…Wookies…

It’s just the most fascinating and often frustrating thing!

Yet Gary and I must lay aside our desire to lecture as we slip with Aaron into his groove, talk about the very unique subjects that permeate his mind, and be ready for the next onslaught of travel anger.

It’s a delicate dance that we know all too well, accompanied by the music of Aaron’s world.  The band isn’t always in tune, at least not to us, but Gary and I had best just dance along and let Aaron lead.

It’s the Texas Two-Step!  Except for us it’s two steps forward…on a good day…and at least one step back.  Often more.

Last night, as Aaron still processed all things travel related, his face lit up.

“MOM!!  Can Kyle tell me all about the submarine?  Because if he can then I’ll go to Houston!”

So Kyle, who has a degree in maritime studies but has never worked on a submarine, has been given an assignment for which to prep before we come.  And his dad, Kent…who served in the Navy on a sub…will no doubt be invaluable.  Andrea said we should just have Kent waiting in the driveway when we pull in.  😊  😊

It’s good that we can all laugh. 

All of us except Aaron, who takes every bit of this very seriously. 

Time for me to get our day going.  Gary and I are taking Aaron to the zoo, which is close and does not require travel but also does not…to my knowledge…have a submarine.  Too bad!

Looks like it will be a beautiful day for a dance. 

Aaron’s Prayer

Last week Aaron was extra grouchy every morning when it came time to get out of bed.  Nothing I said or did made a difference.  Nothing Gary said or did made a difference, either.  So, it seemed we were stuck in perpetual morning grouchiness.

Believe me, Aaron can re-define what it means to display said grouchiness.  Can he ever! 

I have many AAAAAHHHHHH moments when he is on that level of refusal to get out of bed.  Aaron can be very verbal, and not in a nice way, when he is tired and sleepy at the beginning of his day.

Therefore, I sometimes tell him that I am done and then I disengage.  I don’t respond to his words or his demands, and I tell him that the decision about his day is his to make.  He eventually settles down and all is well.

Last Thursday, our Meals on Wheels delivery day, saw Aaron once again very angry about getting out of bed.  I quickly decided to get off that path, telling him that I would go without him and proceeding to get ready to leave.

Aaron could not bear that thought.  As we drove to the senior center a while later, Aaron’s mood improved.  His music made him happy as did the thought of eating lunch at a restaurant after our deliveries.

Aaron was very helpful and he enjoyed seeing our clients, as well as the various dogs and other animals that we have come to know. 

“Mom, did I do good today?” he asked as we finished at our last house.

I assured him that he did just fine, and he smiled happily as he rubbed his hands together.

Soon we were at Jose Pepper’s being pampered by Emily, our server that we have come to know.  She loves Aaron and is excellent with him.

We were munching on chips and salsa, along with a free espinaca, when Aaron’s salad arrived. 

“OK,” Aaron said, “let’s pray.”

I love it when the praying part is his suggestion.  I also love it when he agrees to ask the blessing, which he did on this day.

Now Aaron’s prayers are always two sentences, and they are always thanking God for things.  He might say, “Thank You for the food and thank You that we got to go to Meals on Wheels.”

But on this day, as we bowed our heads, Aaron got completely off script in a very wonderful way.

“Dear Lord,” he said, “next time on Thursday will You help me do better about going to Meals on Wheels?”

I seriously cannot remember Aaron praying like that in a very very long time.  Maybe ever. My heart was so touched and warmed by his simple yet heartfelt prayer.

Aaron does feel things much more deeply than we usually know.  It’s hard for him to process his feelings and thoughts in a controlled way when he’s frustrated.  Hard for him to let us know what it is he is feeling without hurting OUR feelings.

We enjoyed our lunch so much, even if Aaron wasn’t totally sure what he was eating.

“Mom?  What’s this green stuff?!” 

Being color blind makes Aaron’s life even MORE interesting…and ours as well. 

Green food and a great prayer. 

Thank you, Lord, for those blessings. 

It Was a Trip!

Well, we are home from our trip to Gary’s beautiful Smoky Mountain hometown.  Days have been busy as we settle in, with Gary and I getting ready for another trip next week…this one without Aaron…so time is short for all the writing I would love to do.

As many of you know, our trek home was to help Gary’s sister, Sandra, when she returned home from having knee replacement surgery.  So, in a sense this was a working trip, and one that we are very thankful we could take.  A big thanks, as well, to all of you who were praying for us and for Sandra!

We brought Aaron with us, much against his desires…and at times, our better judgment.  😊  But we know that he needs to travel some with us, and that this will occur more now that Gary is retired.  Plus, family wants to see Aaron, even if Aaron is less than enthusiastic.

There is so much about traveling that is a struggle for Aaron, but the biggest issue is his autistic need to have his life in just a certain order.  Sorting and packing and stuffing things in a car is NOT Aaron’s definition of order.  I work hard to have his DVDs in one tote…his music CDs in another…his snacks in a snack bag…his sweater…his Handy Answer Garden Book…his computer that Gary packed in a box…  You get the picture.

Aaron does not.

We had already decided to take his stuffed snake and his very most favorite blanket.  Yet on the morning we were leaving, downstairs he came carrying a game system that did not even work properly and that he never uses.  And two extra Handy Answer books that I knew he would not touch.  These became his hill to die on.  No amount of persuasion worked to make him relinquish these suddenly all-important items, so in the car they were also crammed and away we drove. 

Gary and I were exhausted before we had even left our circle.

Aaron settled in his seat behind us, alternating mostly between watching a movie or listening to music, whooping or clapping way too loudly until we objected loudly and he quietened down until his next burst of excitement.  We saw cows and horses and sheep and rivers and lakes and interesting buildings.  But the buildings that Aaron loved most were ones where we stopped for gas, for inside those buildings were LOTS of snacks he did not have in his snack bag and slushies and hot dogs and all sorts of other possibilities. 

I had packed separate bags for our hotel stay that first night in order not to lug in all our heavy luggage.  Of course, Aaron’s arms became full of his two extra Handy Answer books that he did not need in the hotel room and his blanket that MUST go on his bed. 

Sigh.

Later, after a frustrating dinner at a REAL restaurant – as Aaron calls it – we were in our hotel room for the night.  The two Handy Answer books were on a table not to be touched again until they were carried to the car the next morning. 

And Aaron was snug in his bed reading his Handy Answer Garden Book with his blanket on top as it always is and always should be. 

This blog would be way too long if I included details of everything.  I’ll try to be brief by saying that Aaron really did do amazingly well considering all he had to handle.  He was bossy at times, but we knew he was just trying to control his surroundings.  It’s actually very interesting to watch but requires us to pull back and observe without our frustrations obscuring our view. 

We got to Sandra’s house the night before she came home from the hospital, so we had time to get situated and organized.  Gary got Aaron’s computer hooked up on the desk in his bedroom he used.  I got all his other things put in place…his star lamp we had packed, his Handy Answer Garden book within reach of his bed, his other two Handy Answer books off to the side to remain untouched, his music and his movies, his monitor on the nightstand, and finally his blanket on his bed just right. 

I got my part of the monitor plugged in and like we always do at night, I pushed the talk button and told him good-night one more time.  Getting everything all set up and plugged in was a bit of a challenge, so when I told Aaron good night I added:

“We’re up and running, Aaron!”

Aaron:  No, I’m not.

Me:  You’re not what?

Aaron:  I’m not up and running, I’m in bed.

A laugh was a great way to end the day!    😅😅😅

It was a blessing to be there to help Sandra, who is doing very well in her healing and progressing with her walking.  We got to spend time with lots of other family, which was wonderful!

Like I said, Aaron had so much change to handle and all of us were proud of how well he did.  All of us, too, were recipients of his anger and frustration that at times got the best of him. 

One evening Aaron was upset and very out of sorts.  Nothing calmed him and no one could reason with him.  But the person who helped him the most didn’t even realize that he held the key which set Aaron back on the right track.  Gary’s cousin, Bob, let Aaron talk about Star Wars this and Star Wars that.  Bob listened and commented and asked questions, and Aaron slipped back into his happy place where he is at home though he was not at home.  Aaron needed familiarity and having someone let him talk about a subject that was so out-of-place for all of us but Aaron was exactly the solution to ease his unsettled mind.

The last day and a half were particularly rough.  Aaron was done.  He was overloaded and spent and just so ready to go home.  He didn’t want to come out of his room.  He lay in his bed with the covers pulled over his head.  When he did emerge, he was defiant and angry. 

He focused his anger on Sandra.  I felt so badly for her. 

Sandra was his target because he knew we had come to help her, so in his mind his misery was her fault.  Nothing could dissuade him from that skewed perspective. 

My brother and sister-in-law came that night to visit, and somehow their attention…and their gift of a West Virginia Mountaineer cap that Aaron loves!…broke the angry cycle.  Jeanie’s great interest in those Handy Answer Books sealed the deal!

The next morning, we re-stuffed the car and said our goodbyes.  Aaron was happy as he could be, of course, as you can see in this picture with his Aunt Sandra and Aunt Mary Leah.

We soaked in the beautiful views as we drove away through those gorgeous mountains.

We smiled at Aaron wearing his ever-present sweater at a rest stop, no matter the warm temperature.

Now Aaron is home where he belongs.  Home where he is once again finding something else unique in the produce section at Dillon’s.

Home where he can settle in to watch a show with Mom and eat his snacks, with his blanket over him as it should be.

We’ll let the dust settle before we mention a possible Thanksgiving trip! 

In the Eye of the Storm

Life has been pretty tempestuous and I’m not just talking about a whirling mess out in the Gulf by the name of Laura.  We’ve had our own commotion under our roof.  Hurricane Aaron has been building for several days and the other night we were inundated with his storm surge.  Honestly, though, my outburst was stronger than his by a long shot!

Ah, the wonders and joys of autism.  Aaron wants…needs…routine and predictability and all his things in all their proper places.  Upheaval of any kind creates stress for him, and stress for Aaron inevitably creates stress for Gary and me as his parents and caregivers. 

The stresses around us that cause us angst do affect him because his level world is easily tipped by what Gary and I are going through.  Aaron expects us to stay as level as he needs us to be, but we all know that life just isn’t that way.

When Aaron sees Gary and me off kilter, he will then seek to identify what is bothering us.  Then that person or that event becomes the enemy because they have affected him.  Aaron doesn’t mean to be narcissistic.  That delightful character trait is part and parcel with autism.  We know that fact in our heads but sometimes the understanding doesn’t transfer to our hearts during the turmoil.

Several events have impacted us over this past week.  A hoped-for trip to Indiana to see our son didn’t happen.  Disappointment over changed plans crept in.

Then last week we grieved with our daughter and son-in-law, Kyle and Andrea, over the sudden serious health issues of one of their beloved dogs.  Aries started having seizures.  The next week was heart-rending as he declined drastically.  So, this past Friday they made that awful end-of-life decision.  Gary and I were so sad, but I also think that seeing our children’s grief increased our own.  We loved Aries, and we love Kyle and Andrea, so our sorrow was two-fold. 

This is the prayer Kyle prayed the night they said goodbye to Aries:

Aaron really can’t handle seeing us cry but try as we might he did see our tears over the loss of Aries.  We now had the double whammy of changed trip plans and heartbreak over Aries.

However, we were only halfway done with disruptions.  Out in the ocean, Tropical Storm Laura was brewing.  Kyle and Andrea live to the east of Houston, near the water.  Kyle works on a fast responder ship, and those huge vessels don’t stay in the harbor during a hurricane.  Fast forward to today:  Kyle is now on the ship up in one of the channels and will stay there indefinitely.  Andrea is home alone with their other 3 doggies.  She knows she is welcome to go to Kyle’s parent’s home a little further inland but it’s not best to leave your home if you can possibly stay.  So, Gary flew to Houston yesterday and is there with her, which is such a comfort.  His retirement a month ago is a blessing!

Aaron senses our concern about all this hurricane business.  He usually likes to watch the progress of hurricanes, but not this time.  Why?  Because Gary and I are spending too much time, in Aaron’s opinion, monitoring Hurricane Laura…wondering about Kyle and Andrea…planning Gary’s sudden trip…and talking on the phone.  No matter how calm we are, all this time and talk is unusual to Aaron.  Sometimes it takes time away from Aaron. 

On Monday evening, as I finished looking once again at the Weather Channel, Aaron became rude and I became undone.  I lost my temper and lost my cool, and Aaron reacted, and we had our own tempest in the family room.  These things do happen, especially when we are stressed, but then the tension and guilt are increased.  It takes some doing to un-do it all. 

Aaron paced in and out of the family room where I still sat.  We tried to watch a Little House episode but he just could not settle down so he chose to end it and go to bed.  But he kept coming back to me with one more word of anger.  Then he finally stood in front of me.

“I know what I’ll do!!” he belligerently said.

And with that, he stuck his tongue out at me. 

I tell you, I just had to laugh.  He didn’t mean for it to be hilarious, but it was.  I kept my laugh to a minimum and somehow he didn’t get more angry, but it was just really funny.  

I knew when Aaron was finally OK by what happened soon after.  He came bounding once again into the family room, stared at me, and then said:

“Mom?  Do you know what a sea mine is?”

A sea mine?!  But I was actually quite relieved to be talking about sea mines.  Aaron is playing Battleship on his computer, so talk of sea mines was perfectly normal for him.  It showed that he had at last moved beyond our anger and beyond the unsettled surroundings of his world, and he was back to his normal.  I didn’t care one bit about sea mines but trust me, at this point sea mines were a very welcome reprieve!

Aaron’s normal rarely involves human emotion or important life events that impact us.  These issues cause him distress, so he quickly reverts to talk of battleships and sea mines and gun turrets and whatever else comprises his focus at that time.  Gary and I so often shake our heads, but we know we must jump on board with Aaron in order to preserve our peace.  It’s both very frustrating and very fascinating to see how his mind works. 

There is one more thing going on.  Aaron’s bedroom remodel begins tomorrow.  Gary and I had to empty it before Gary left for Houston.  That caused some anxiety, to say the least.  But beyond that is the fact that now Aaron is in another bedroom where all his things are NOT in their normal place. 

“Mom!!  This bed isn’t like my bed!!”

“Mom!!  I like my lamp better!!”

“Mom!!  I don’t like this hard floor!!” 

“Mom!!  I hope I’m not getting a hard floor!!”

“Mom!!  I want to keep my carpet!!”

“Mom!!  My chair doesn’t work right on this hard floor!!”

Shall I continue?

No.  But Aaron will, trust me.

I took Aaron to Outback yesterday after we dropped Gary off at the airport.  Aaron was in his happy place…a restaurant with his choice of food!  As we munched on the warm bread and butter, Aaron looked down at the two pieces left on the cutting board.

“Mom,” he said, “you can have this one and I’ll have the other one.”

I laughed because the one he generously gave to me was the much smaller piece while he got the bigger one.  And it just reminded me of how life is with Aaron.  He doesn’t mean to be this way, but he does require the bigger part of our time and of our understanding and of our attention. 

Therefore, Gary and I require a bigger part of God’s grace and God’s understanding and God’s strength on days such as we have had this past week. 

And God’s forgiveness when we blow it. 

I’m so thankful that He understands.

And I was so thankful to see Aaron smile yesterday as I was able to restore some of his normal.  It’s my responsibility, yes, but also my joy as his mother and his caregiver.

By the way, in the eye of the storm there is peace.  God’s peace, which never fails, is there for me. 

I’m thankful for that, too, during each storm!

Magical and Maddening

“Aaron, look!!” I exclaimed one recent night as I closed our family room blinds.  Aaron walked over to join me at the window.  There, emerging from the grass in our front yard, were dozens of fireflies.  Lightning bugs, we called them where I grew up in West Virginia.

Aaron thought they were very cool!  He insisted that Gary come to the window as well, and so we stood there together for a minute, enjoying the sparkling little bugs.

A few nights later, Gary and I sat on our front porch after the stifling heat of the day had subsided somewhat.  It’s nice for us to enjoy a few moments of quietness and of being together, just the two of us without Aaron’s loud interruptions.  As dusk fell and darkness was encroaching, up from the grass once again came those beautiful fireflies.

It was captivating watching their glow, so many of them combining into a magical light show right in front of us.  So peaceful.

Then…BAM!!

Out on the porch rushed Aaron, who is rarely quiet.  There went the peacefulness of our front porch evening!

“MOM!!  Are we watching a Little House tonight?” he asked, knowing the answer.

I assured him that we would watch an episode, as always.

But, as always, that wasn’t enough for Aaron.

“When?” he asked.  “Can we do it now?”

I knew what was ahead but wanting to remain in the magic of firefly glow I told Aaron that I would let him know when I was ready.  This answer never suits Aaron.

One of the very hardest things for Aaron to do is to wait…on anything.  He especially finds it nearly impossible to wait on me to watch a program with him when HE is ready.  He escalates quickly into anger at those times, no matter what I say or how well I prepare him for the inevitable wait.  That night was no exception.

Our evening was quickly reverting from magical to maddening.

Such is often the life of a caregiver.

My blogging friend, Cheryl, is the author of a caregiving blog written out of her experiences as she cares for her husband who has Parkinson’s.  Our situations are very different but also very similar.  I have loved her insights and her godly wisdom.

In one recent blog…linked here… (https://parkinsonscaregivernet.wordpress.com/2020/06/13/similar-yet-different-but-really-similar/) – she wrote:

“But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.”

The difficult moments with Aaron often involve his autistic behaviors…his demands that life revolves around HIS order and expectations of how things are to be.  During those times, no one else’s desires or needs are considered by Aaron to have importance.

Maddening.

On our firefly night, we told Aaron that he needed to wait.  We tried to get him to  enjoy the magical lights in our front yard but he was blinded by his own frustrations and cared nothing for the beauty around him.  Only one thing mattered.  And he wanted that one thing NOW.

Anger intruded into our evening and stood on our front porch, as opposite in its effect as could possibly be when compared to the earlier joy of time together with Gary among the little sparkles in our yard.

Later, the anger was gone as Aaron and I watched our show.  Aaron is usually oblivious to the effect he has on us during those times as he brushes off the recent outburst and is happy in his bubble again, where all is well.

Oh, that it was so easy for me to do the same!

Like Cheryl said, though, it’s important to hold the moments of joy sacred in our hearts and in our memories.  And to know that we, as caregivers, are doing God’s work here on earth.

My heart this morning was heavy as I helped Aaron during his second seizure…knew that I would have bedding to wash later…canceled my hair appointment…and tried to still my worried heart about other matters.

I had finished my normal Bible study and so I opened my Bible randomly to see where my eyes fell.  I love doing that!  It’s like opening a treasure box that I just unearthed, excited to see what’s inside!

And look what God gave me!!

“But ask the beasts, and they will teach you; the birds of the heavens, and they will tell you; or the bushes of the earth, and they will teach you; and the fish of the sea will declare to you.  Who among all these does not know that the hand of the Lord has done this?  In His hand is the life of every living thing and the breath of all mankind.”  (Job 12:7-10)

It’s all in God’s hands!

Aaron…me…Gary…others I love…our world…

All life and breath is in God’s hand.  All of creation declares that truth!

Now it’s up to me to trust our loving God and to rest in His hand.  And to…most importantly…trust Aaron into His hand and know that God put Aaron into our lives for a purpose I may never know on this earth.

But may I trust God’s knowing.  Trust and know just as much as the beasts and the birds and the bushes trust and know Who has done all this!!

Fireflies know, too, I am sure.

Maybe that’s why they shine their magical lights for all to see!

May I do likewise.

Photo by National Wildlife Photo Contest entrant Radim Schreiber.