Understanding – He Said What?!

Footprints

For the past two days we had a small and gentle snow that fell to the ground and blanketed our brown earth with a fresh coat of white. Besides needing the moisture, it was a relief to look outside and see the drab brown grass and trees transformed into the beauty of a soft winter wonderland…new and sparkling white.

Andrea is still here with us as she enjoys the last day or two of her Christmas break. Along with her, we have her adorable dog – Darcy. Darcy is so small compared to our huge Great Dane, Jackson. The difference in their sizes was very evident yesterday as I looked down at their footprints in the snow. I had no trouble being able to distinguish which print was Jackson’s and which was Darcy’s. The impressions that each dog made in the snow was undeniable…big for Jackson and small for Darcy.

I’ve been thinking about footprints and pondering the significance of those footprints that we cannot see…the footprints that we leave in the lives of people that cross our paths. I have specifically been thinking of Aaron – of some of the people that have left a footprint in his life and therefore have impacted mine. The footprints don’t have to be huge or to be many in order to leave an impact.

Years ago we had a dinner after the morning service at our church. By this time, Aaron was in his teens and his differences were very pronounced. Most of his peers did not know what to do with Aaron…how to talk to him or relate to him. They weren’t unkind but most simply handled the situation of Aaron by ignoring him, or by speaking briefly and then walking uncomfortably away from this person who was so unusual. As I went through the serving line and filled my plate, I looked around for Aaron in order to direct him to the table where we would be sitting. But there was no Aaron to be found as my eyes scanned the room.

Then I saw him sitting at a table full of teenaged boys. I wondered if Aaron had just seated himself there and my heart fell as I feared that he might be ignored. It was then that Gary told me that one of the young men at that table, Tyler Ellis, had asked Aaron if he wanted to sit with them. I was shocked…and I was also so very happy. What to Tyler probably seemed like a very small thing to do was instead a huge blessing to Gary and me. That incident left a footprint in my heart that remains today…a footprint of kindness that still warms me and makes me smile.

I have another footprint involving a young man that had his own struggles yet had a heart of gold. Paul Gilbow came over to our house to swim with Aaron. What was routine for our other children was rare for Aaron…to have someone purposely come over to swim with him and spend time with him. I remember the joy that filled my heart as I looked out the window and watched Paul and Aaron swim. Paul was unaffected by Aaron’s unusual behaviors or speech or appearance. He gave Aaron a day of normalcy and fun, and he gave me a footprint in my life that will stay forever. Paul has left this earth but his sweet footprint remains with me.

We each leave footprints in the lives of others. Some of those prints are with intent as we purposely reach out to touch others and to help them along the way…or sadly as we may reach out to inflict verbal pain or to ignore those that we dislike. Other prints we may never see or realize as we affect people in ways of which we are unaware. I often wonder that if the footprints of our attitudes and our deeds were visible, like Jackson’s and Darcy’s, then what would mine look like? When I leave a footprint in some one’s life, what kind will it be? Will someone look at the footprints in their life and recognize mine? And if they do, will it be because of a smile or an act of love and caring? Or will they see anger or frustration or neglect?

I want this New Year to be a year of making the right kinds of footprints in the lives of others…and to remember that even the very smallest of prints can leave a lifelong, profound effect on those whose lives I somehow touch.

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.

Listen to The Music

The self-checkout at our nearby Dillon’s grocery store plays music when it’s time to take your receipt. Only about four notes play over and over until you get your receipt. It’s just another automated reminder and no big deal.

Unless you’re Aaron!

Aaron is absolutely fascinated by the little electronic jingle. Most of us would barely notice it or would brush it off as annoying.

Again, not Aaron!

Every time Aaron and I go through the self-checkout line, he leans way over the scanner when he knows that I’m done. He wants to clearly hear the music.

I took a picture of him a couple weeks ago as he listened to the notes.

There he was, a grown man with his long flowing sweater on, leaning way over the scanner.

He did not care one bit about how he looked.

He did not care one bit about who thought what.

Here is something I have learned in our life with Aaron. I have learned that it’s best if I also do not care one bit about how he looked.

And it’s best if I do not care one bit about who thought what.

Aaron doesn’t just march to the beat of a different drummer. He marches to the beat of a whole different symphony!

He will stop to listen and observe and comment about things that most of us don’t even see.

He takes the time to listen to the music of life around him in ways that most people do not.

So when he leaned over the scanner this last time, instead of being embarrassed and looking around to see who was staring at us, I just laughed and joined in the fun. I didn’t grab my receipt right away so that the music would play a little longer and Aaron could totally enjoy it.

And you know what?

I totally enjoyed it, too.

Looking at the world…and listening to the world…with Aaron, in his way, really is such beautiful music.

At least it is most of the time. 😊 😊

Too Much Love!

I guess the best way I could describe Aaron and the subject of love is this:

Aaron holds love at a distance, admiring the concept but not wanting or able to become too involved in the process.

Welcome to how autism colors every single aspect of Aaron’s life, and therefore ours as well…or anyone who is associated with Aaron.

Valentine’s Day has been on Aaron’s mind since soon after Christmas when all the red hearts and cute stuffed animals and boxes of candy appeared on store shelves. Aaron flits from one shelf to the next, holding up items and laughing as he very loudly says, “MOM!! Look at this!! Can I have it??!!”

It’s all great fun as he zooms around finding lots of treasures. This idea of love is safe as Aaron, ever hopeful about his quest for “things,” attempts to score a bag of candy or a cute trinket to tuck away in his room.

Aaron does love showing love, but on his terms. Aaron’s terms are dictated by his inner workings and thoughts, deeply affected by the effects of autism.

At our local Dillon’s just down the road, we have come to know Jody. She is a joy with a warm and loving heart. Jody has personal family connections to special needs. She has come to know Aaron and loves to interact with him. Jody knows that sometimes Aaron enjoys buying flowers there that he gives to certain people, often ones in his day group, Paradigm.

One recent day, when I was in Dillon’s without Aaron, Jody asked me if I thought that Aaron would like to give flowers to his friends at Paradigm for Valentine’s Day. Dillon’s donates flowers to all sorts of local places like hospitals, nursing homes, etc.

I thought that was a wonderful idea, so we made our plan. Barb, Paradigm supervisor and second mom to Aaron (though she’s too young to be his mom!), gave me numbers, and Jody did the ordering, and Aaron and I did the picking up.

Perfect, right?

Wrong.

Aaron and I were eating lunch after our Meals on Wheels delivery the day before the flower pick-up and delivery. The day before the big Valentine party at Paradigm.

Aaron does not handle parties and celebrations well…at all.

Aaron does not handle expectations well…at all.

“Mom?” he began as we ate our lunch, “you make me feel like you think I need to be in love with the clients.”

I knew we were in trouble with all this business of flowers and parties and LOVE.

I explained, much more than once, over the remainder of that day about the purpose of the flowers. I knew I was fighting an uphill battle, though.

I especially knew this when yesterday morning, Valentine party and flower delivery day, Aaron stood by my desk early…eyes droopy with sleep…and spoke his first words of the morning:

“Mom, I feel embarrassed by this love thing.”

Sigh.

Over the course of the morning, I told him that I would take the flowers…that he didn’t need to go…that it was fine for him to stay home from all the party stress…and so forth and so on.

But no, Aaron felt compelled to go…to give this difficult day a try.

Later, as we picked up the big box of beautiful roses from the Dillon’s florist, one of the ladies there very happily looked at us and said:

“You’re delivering some LOVE!!!”

Bless her heart, she had no idea. I don’t think she heard Aaron’s reply.

“No!!” he simply said.

But that simple reply told SO much!

I made it to Paradigm with grouchy overloaded Aaron. He was showing anything but love, except to Barb when he gave her a gift he had made. He managed a smile for a picture.

He fell on the floor when he backed up into a friend in a wheelchair (neither were hurt). But that certainly didn’t help his love feelings. The party atmosphere was loud and just too much for Aaron, but it always is, so we left and headed home…with Aaron feeling terrible about the fall and the unmet expectations.

The flowers were beautiful and made the clients, especially the girls, feel loved and happy.

Aaron enjoyed seeing a picture of his happy friends that Barb sent. But again, seeing it from a distance was best for him.

Gary and I took Aaron to lunch at a small local Asian restaurant nearby. This made Aaron happy. He processed the morning as he talked about it with us.

He also made us laugh and laugh at his reaction to only having ONE fork. To Aaron, one eating utensil is never enough! This is Aaron’s norm:

But he handled that one fork very well, which was an accomplishment worthy of note to me and Gary.

Small victories are pretty big to us.

Aaron’s happiness is big, too.

A trip to Wal-Mart after lunch. Some Red Hots and a new game for Valentine’s Day. All these things made Aaron very content and happy.

We know to do life Aaron’s way when we can. Beauty comes in all shapes and sizes.

Seeing Aaron’s reaction to his one fork held a world of meaning to me and Gary.

I’ll hold that in my heart on this Valentine’s weekend.

We love you, Aaron!

Up close or from a distance, depending on Aaron – of course!

Our Man Kid

A couple weeks ago I was talking to our daughter on the phone. Almost always, when she and I are on the phone, Aaron will come bounding up to me and without lowering his voice he will ask if that’s Andrea. I shake my head yes and so the hovering begins as he waits for HIS turn to talk to Andrea. I finally let him have his time, knowing that if I don’t he will most likely linger close by until I do.

“ANDREA!!” he begins. “Guess what game I’m playing now?!”

And he’s off, talking about everything under the sun that has to do with his world. He never asks about her life or how she’s doing. Never. But she understands that about her brother. She laughs with him and talks to him about all his games and movies and answers his unusual questions about unusual things as seriously as if she’s talking to a lab manager about the proper way to conduct a molecular test.

A couple weeks ago, she and I were talking about how Aaron is and how he must appear to others. His conversations, his approach to life, his characteristics that others observe when they first see Aaron or if they know Aaron well…everything that makes Aaron who Aaron is. Andrea said that he really is just a kid in a man’s body.

Then later that same evening, Aaron and I were talking to a neighbor and her young son out on our driveway. This little boy just looked up at Aaron as Aaron went on and on about whatever. Aaron was talking rather loudly, as usual, and all the time he talked he kept working his fingers together the way that he does.

Finally, our young friend was able to get a word in…a question, actually.

“Are you a man kid?” he asked Aaron.

That question went completely over Aaron’s head as he just barreled on with his topic of interest at that moment.

But it stopped me in my tracks.

“What a perfect way to describe him!” I quietly told his mother.

And how interesting that Andrea and I had said that same thing, yet not as precisely, just that afternoon.

A man kid.

There stands Aaron, looking every bit like a man…and he is. He has a man’s voice, a man’s physique, a man’s facial hair, and even a man’s balding head. 😊

But he acts so much like a kid! And to other kids I know it’s a process to try to figure Aaron out. We’re so used to him that we don’t often mentally step back and think of how it must be for children to understand Aaron.

Tomorrow is Aaron’s birthday. Our son, who is a man, turns 36 tomorrow!

Our son, who is a kid, is exuberantly excited about his birthday. He always is, every single year.

If you ask him how old he will be, he pauses as he tries to remember his new age. That number of “36” means nothing to him.

But oh, his birthday means everything to him. Just ask our neighbors, some from around our circle that we don’t really know. If Aaron is outside and he sees someone walking by, he briskly heads to the street.

“HEY!!” he yelled the other day to a couple of ladies. “It’s almost my birthday!!”

They laughed and congratulated him as they went on their way.

And our man kid stood there rubbing his hands together in delight, with his deep chuckle bubbling up, his sweater flapping in the breeze, and joy all over his face.

Remembering that Aaron is a man kid helps us enjoy him.

But more importantly, it helps us understand him…and understanding Aaron is crucial in how we live with him and deal with him.

Happy Birthday, Aaron!!

We love you, man kid!!

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!

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.

To Ignore Aaron

Anyone who has been exposed to Aaron will no doubt agree on this: Aaron is very hard to ignore!

Aaron is going to do what Aaron is going to do. He is mostly unaware and uncaring of the reactions he generates from others.

Whether he is sitting in our front yard relaxing as he breaks apart the mulch:

Or dressing in this hilarious “fashion” for all to see:

Or deciding to pet Moe, our neighbor’s cat, on Moe’s level:

There is generally no stopping Aaron from forging ahead with his version of living life to the fullest!

Aaron struggles with waiting on me to do an activity with him. I often don’t tell him that we’re going somewhere, for instance, until shortly before we leave. If I tell him that we’re going out, then he hovers and gets very impatient with me. Best to just dash out the door quickly than to endure the anger that his impatience causes.

But some activities are set in stone, for the most part, and Aaron will begin his hovering when HE is ready for whatever that event is. Every night we watch a program together. Most often it’s a series that we are going through. Right now we’re watching Little House on The Prairie. Nearly every night Aaron will begin his impatient waiting for me to be ready to watch our next episode. He will stand outside my bedroom or bathroom door, talking and questioning and getting angry if I don’t hurry. One recent evening, I told him to NOT wait outside my door. I was pleased that he obeyed, and I could get ready in peace and quiet.

But when I rounded the corner to go downstairs, here is what I saw:

Oh Aaron!! 😊 😊

“I’m waiting on you to get ready!!!” he informed me.

And once again, Aaron was impossible to ignore.

When Aaron has crossed the line with his behaviors, though, one way to get my point across to him about his disobedience is to ignore him. I become quiet and I barely answer his questions, if at all. It’s hard for me to do that but I have learned that being ignored by me speaks more profoundly to Aaron than all the words in the world that I could use. He knows he has really done wrong and that he must make it right.

Last week Aaron and I were in a store. We were checking ourselves out when I ran into a problem and needed help. When the attendant stepped around the corner to help me, I saw that it was someone I have come to know there. Aaron knows her, as well. This person has a hard life, and sometimes she is very down. She doesn’t hide it, and when she approached me, I knew that she was having a bad day. She didn’t engage me at all when I spoke to her. I can handle that – no problem.

But Aaron doesn’t get those cues from people that you and I see. He noticed that her hair was different and so when she walked away from me, he followed her. When she stopped a short distance away, with Aaron at her back, he rubbed his hands together as he happily spoke to her.

“Your hair is short!!” he declared.

No response from her as she kept her back to Aaron.

“Your hair is short!!” he tried again.

Still no response.

I called Aaron back to me, telling him that she was busy, and he didn’t need to bother her today. I knew he was confused, though, because typically she engages him with interest and kindness.

As for me…I was so angry. For someone to dismiss and ignore Aaron has always been a very hard thing for me to handle.

I stayed pretty riled up about it for the rest of that day. I talked to my husband and to my daughter about it later. I stewed and brewed for quite some time.

But God, as He always does if I but listen, told me that I should not only pray about my reaction but that I should definitely pray for this sad person.

And that I should remember a verse from Psalm 37 that I had recently studied:

“Cease from anger and forsake wrath; do not fret; it only leads to evildoing.” (Psalm 37:8)

Do you know what the word “fret” means? It means “to get burned up.”

And that’s exactly how I felt! It burned me up to see Aaron being so blatantly ignored!

Yet what I needed to carry away from this situation wasn’t my load of anger, or my justification for it. I needed to release my feelings to God and just put a stop to my desire to get even…to report her…to make a point.

Getting steamed about our hurts often leads to evildoing, as that verse says. We certainly are seeing that in our country today!

How much better it is to talk to God about it, and to follow the example of Jesus…who, though reviled, did not strike back.

It’s a choice I am allowed by God to make.

Do I choose peace? Or do I choose conflict?

It’s best to follow Aaron’s example, too. He does bounce back quickly from his anger and hurt, most of the time, settling in to the next thing that captures his attention.

So, like Aaron, I’ll find and choose the joy…in whatever shape it takes.

Where There’s A Will…

Autism 101: Individuals with autism tend to “…have eccentric preoccupations or odd, intense fixations… They tend to follow their own inclinations regardless of external demands…” (Karen Williams)

You got that one right, Karen!

In our home, living with Aaron means that Gary and I also live with his fixations. Sometimes his obsessions are funny. Sometimes they are maddening. Sometimes they are exhausting.

But always, Aaron will…to finish the above title…find a way to fulfill his inner demands of how his life is to be lived.

Like his mealtime routine. Aaron will always, always, always, have multiple utensils or plates or bowls of whatever kind he desires for each meal. Here was his place setting recently as he ate lunch in the family room.

We have come to expect this, and we don’t even try to correct him. He will make sure to have the proper number of knives, forks, or spoons for every meal. I am just very thankful that I have a dishwasher!

How about movie credits? Gary and I watched a movie yesterday. Afterwards, we wondered where the movie was filmed. We watched the credits to find our answer, which happened to be at the very bottom of the huge stream of names and job titles. And we laughed at ourselves, realizing we had become…for that moment…just like Aaron.

Aaron…who watches movie credits with as much focus as he watches the movie.

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Aaron loves his Star Light that he turns on every night. It was a Christmas gift from Kyle and Andrea, and he has turned it on every night since then. Aaron very quickly developed his own rules for his Star Light. He wants it turned on just as he is getting into bed.

One night, Gary came upstairs shortly before Aaron was actually getting INTO his bed. Aaron wanted Gary to see his Star Light, so while Gary stood in the doorway, Aaron turned the light on. Gary oohed and aahed, Aaron was very happy, and then off went the light. Maybe two minutes later…tops…Aaron turned the light back on because he was now getting INTO bed and it was the REAL time to turn on his Star Light.

Back to Karen Williams’ quote: Aaron will follow his own inclinations regardless of external demands.

Gary and I are usually the ones making those external demands in many cases.

Let’s talk sweaters…Aaron’s sweaters, to be precise. Of course.

Aaron LOVES his sweaters. Certain sweaters are better than others, and he will wear them until they are worn to bits. He had this old sweater for several years, but it was his very favorite. He wore it or carried it or had it nearby, inside and outside…always.

This year, for Christmas, I ordered him two new sweaters. They are long and flowing, the kind he loves. And love them he does!

He wears one pretty constantly. Inside and outside, his sweater is being worn.

He also wants to wear it to bed, under all his necessary covers…including his new weighted blanket that he loves. This means that sometimes he gets too hot, but he will rarely agree to sleep without his sweater. This happened on Saturday night when he talked about being too hot the night before.

Enter the external demands, made by me. I reminded him that he should remove his sweater before climbing into bed. He was reluctant, but finally agreed to those external forces trying to rearrange his internal inclinations.

We discussed it on his monitor when I went into my bedroom. We discussed it as he stood at my closed bathroom door while I tried to brush my teeth. And he continued to discuss it with Gary after he clomped down two sets of stairs to Gary’s study.

We thought we had won. We were the new KING AND QUEEN OF EXTERNAL DEMANDS!!!!

Silly us.

Soon Gary came upstairs. Aaron called out to him from behind his closed bedroom door, wanting one last word with Dad.

And last word it was…for there lay Aaron.

Wearing his sweater.

On TOP of the covers.

We removed our King and Queen crowns as we climbed into our own bed.

Instead, we wore smiles.

Why fight the inevitable, right?

Aaron will always find a way.

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