Travel – He Said What?!

The Normal Road

As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel. We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident. I told Aaron that I would need to go another way home after I dropped him off. This concerned him but I assured him that it was no big deal.

All was clear on the highway and the exits when I picked Aaron up later that afternoon.

“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”

It took me a second, but then I understood what he meant. He was very happy as I turned into our exit that we could go up the road that we are normal with.

Aaron was completely unaware that he had just perfectly described his life with autism. And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.

Aaron wants to stay on the road that he is normal with. Any variation of that road will most certainly be full of potholes and unexpected detours.

The road that Aaron is normal with is only at home. It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.

His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us. He takes more books than he will read in three years. More music than he will listen to in the week that we are gone. Way more food than he will eat and way more games than he will play.

And he takes way more out of all of us than we feel that we can give.

Patience and understanding are our goal on every trip, but they are often stretched very thin. If only my scales would show how thinly I am stretched! 😊

One evening we were setting the table for supper at our daughter’s house. I gave Aaron one fork just like all of us were using. But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.

Always, always, Aaron will take two forks and two spoons and two knives. He doesn’t use them but what we need to understand is that for some reason he does NEED them.

Again, here is a perfect description of living with autism – this time in picture form.

You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware.

Aaron needs more. He can’t even tell you why he does but he indeed must have more.

He must have more than the rest of us in so many areas of his life. Sometimes it’s hard to remember that. It’s hard to be patient with him and understanding of a need that we don’t have. A need that seems so unreasonable.

But the complexities of autism are not to be trifled with.

There are many ways that we as parents can guide and train Aaron, and we have.

But we must be wise in choosing our battles. Some battles we will always lose, and such a loss is not worth it.

The road that Aaron is normal with is also a road that Gary and I travel right alongside him.

I guess you could say that over the years we have a new normal…one we could never have dreamed of having.

Some days the trip is long, and we feel near empty.

Then we see a view like this, and our hearts are full again.

Another Trip to Texas

Two weeks ago today we were travelling down to Texas to see our kids. Our “kid” Aaron went with us, somewhat compliantly until the morning we left. The reality of actually leaving the house and his room and all his things was too much for him to handle gracefully.

All during the packing process I encouraged him to downsize what he took. For instance, I told him to take the one Handy Answer book he was reading…not five. He won’t read five books in the next three years. That’s because he will ONLY read at night before bed, a few pages, and nothing so far has ever changed that reality for him. He agreed to this deal, but as I was putting something in one of his bags, I uncovered two extra Handy Answer books that he had hidden from me under some clothes. I removed them, saying nothing. He put them back, saying nothing. HaHa! We finally agreed on taking one extra book, which of course was never opened.

We also let him use his money to buy a Nintendo game he had wanted. He bought it two days before we left, but the game was in our possession until he walked into Kyle and Andrea’s house in Texas. Call it bribery if you want, but we call it another of our clever survival tips for traveling with an autistic child. Survival for us even more than Aaron.

Other than dragging Aaron kicking and screaming out of the house on the morning we left…not literally, but almost…he did great on this trip. I’ll start my photo dump now.

Happy Aaron blowing his straw wrapper on me at Quik Trip.

Spending Easter morning at church with Kyle and Andrea. A huge blessing!

Then giving Aaron the basket that Andrea made for him. Sweet sister!

He helped Kyle gather sticks before their new fence was installed the next day. Kyle is great about getting Aaron involved with activities.

He fed the dogs every chance he got!

Our big outing was to NASA. He was having a slow day physically and mentally, but he loves telling everyone about that day.

Our son, Andrew, was in town for an NHRA race. He got to come over for dinner one night. What a joy to have us all together, even briefly.

Gary, Andrea, and I went to the race on Saturday while Kyle stayed home with Aaron.

And on Sunday, their Monster Energy team won!! Sadly, we were unable to be there that day. ☹

I love the love that Andrea, Kyle, and Andrew show to Aaron. I wish I had a picture of Kyle trying to teach Aaron to do push-ups while we were at the track. Or one of him the night we arrived giving Aaron the special game he bought him. 😊

The week was packed with much more, but I’ll end this now with a funny story:

Background: For years my family has had fun with my association with cows, as in cow Patty. I also go by Moo as much as Mom. 😂

On our way to Houston, we stopped at our favorite tourist center/rest stop in Oklahoma City. Aaron was ecstatic that Gary told him he could buy me a little stuffed cow.

Aaron decided to explain his purchase to the clerk at the cash register.

Loudly.

“I’m buying this for my mom because she’s a COW!!”

I explained as best I could.

Then she pointed me to a bag of candy.

Cow Patties. 😂😂😂

Thanks for reading! Have a wonderful weekend!

Our Texas Trip – Part 3

I want to wind up my tales of our Texas trip with this blog…I hope. This doesn’t need to drag on for weeks! 😊

I told about the Aquarium Pyramid in Galveston in my last blog. A few days after that adventure, we went back to Galveston to go see the Rainforest Pyramid. These are such unique buildings!

Aaron loved the Rainforest as well, although he wasn’t over the moon excited like he was in the aquarium. Still, it was great fun to see all sorts of rainforest birds:

Flowers:

Fish:

And when I turned around, it was not such great fun to see Aaron’s hand stretched out toward this cute little monkey and see the monkey holding Aaron’s finger!! Actually, it was adorable, but we knew he wasn’t supposed to touch the animals. And then he told a worker about his fun moment, and he got a nice lecture. 😊

It was another wonderful day for all of us.

And ended with supper at Skipper’s.

I wanted to also share a few of the sweet family moments that made this trip extra special.

Our son, Andrew, was in town for an NHRA race. He lives near Indianapolis where the teams are located, and he travels all over, so we don’t see him nearly enough. We usually go to the Houston race but the chance of the race being cancelled due to COVID kept us from buying tickets this year. Here is a shot of what he does – he’s in the center, starting the top fuel car.

He was able to come over to Andrea and Kyle’s house for an evening. It was so wonderful to all be together for the first time since I don’t know when.

We took a picture that’s not the greatest quality but still shows the greatest time together. And look at Aaron! 😊

Another sweet moment was playing Skip-Bo with Andrea. Aaron keeps a notebook record of who wins each game when he and I play.

But as we played with Andrea, Aaron REALLY wanted her to win. He watched her cards carefully and would purposely not play his if it meant she could play hers instead. Therefore, she won the game and Aaron was thrilled! He had already gotten a piece of paper and very happily gave her a column with her first win mark. It was just precious!

Kyle promised to play catch outside with Aaron on Saturday, but it poured rain all day. Therefore, Kyle grabbed some soft dog toys and played catch with Aaron inside, which tickled Aaron to pieces.

Aaron had lots of quality doggie time, which he loved…and so did the dogs (for the most part!). They certainly knew where to go to have a treat slipped to them!

On the morning we left to go home, Aaron was all packed up and ready to hit the road.

Aaron: I’m sad to leave Andrea.

Me: So you’ll want to come back again and see her?

Aaron: Nah.

😆😆

But he did worry all the way home about leaving her and whether she was lonely. We didn’t tell him that she might have been enjoying the quiet.

So, again, I want to thank all of you that were praying for us on this vacation. This trip truly was the best ever with Aaron, and we are very sure it was due to all the prayers from all of you. Thank you so, so much!

And thank you for reading about our fun times and all the sweet memories made.

Our Texas Trip – Part 2

In my previous blog, I shared with you some of the difficulties Aaron had as we went to Texas to see our other children. Kyle and Andrea live just east of Houston, and our son Andrew was going to be in town there for an NHRA race – he works for one of the teams.

Aaron loves talking to his siblings on the phone. He could go on for hours, literally, talking about all his interests. But suddenly the idea of actually being with them was not so appealing. It’s the traveling and leaving his comfort zone that he simply cannot handle.

We all know Aaron very well and have come to expect his anger when his world is upended. During Christmas, we refer to Aaron’s Annual Christmas Meltdown as we know it will inevitably occur. So on this week of vacation and visiting, we were fully expecting Aaron’s Annual Vacation Meltdown.

We started our week off in a safe mode, doing something Aaron loves – shopping! He was happy to go to Sam’s with me and Andrea, carting home extra goodies that he chose. He was more relaxed and happy that day, until we told him that the next day we were going to the Aquarium Pyramid in Galveston.

His discomfort level rose as he contemplated tackling one more unfamiliar place. But when we showed him a video of some of the displays there, his interest overcame his doubt. And oh my goodness, what a day we had!

The building itself is beautiful:

And once inside, Aaron was beside himself excited! He loved every single minute. Everyone nearby heard and saw his joy as he laughed and pointed and talked up a storm. The day was truly delightful. Here are some pictures.

Near the entrance, with Gary and Andrea:

He LOVED the penguins: 🙂 🙂

The tunnel was amazing:

He got to pet the Manta Rays, but the first time he bent over in a deeper area he started to fall in the water! He would have totally fallen in had Gary and I not grabbed him. His soaking wet shirt and shorts didn’t bother him in the least. We went up to a safer place and he carried on while Gary and I held on…to HIM!

A visit to the gift shop ended with us buying Aaron a stuffed penguin he wanted. On the way out of the aquarium, we passed one more penguin display, where Aaron showed the live penguins his stuffed penguin. The reaction of the one of the penguins, and of Aaron, was priceless.

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We ate lunch at Jimmy’s On The Pier. It was very windy outside but so beautiful!

What a very fun and wonderful day for all of us, full of happy memories! I’ll share more in my next Texas blog. Thanks for reading!

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.

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!

So Many Changes!

Hasn’t this been a year of change? My goodness, all of us are suffering from whiplash when we think of how quickly we’ve been hit with change across the board, in every area of our lives.

When I fine-tune my vision and focus on our little family in our own little world, I see how all these changes…and other more personal ones…have affected us a lot. Gary and I don’t just have ourselves to consider, of course. For us as parents, certainly, we always look at how change is affecting our children. It doesn’t matter that Andrea and Kyle, and Andrew, all live far away. We still ponder and pray every day about their lives and what impacts them.

Here at home, though, we are the most affected by how changes in life hit Aaron. Trust me, the word “hit” is appropriate when speaking of Aaron and change. Sometimes Gary and I don’t quite know what hit us when change hits Aaron.

Aaron has handled COVID issues very well, for the most part. He’s still thoroughly sick of it, pardon the pun. Yet he wears his mask well in public and has adjusted to this new way of living much better than some I know. I’m very proud of him for that.

His day group opened the first part of July and things have gone well until recently, when several clients tested positive for the virus. The day center has been closed now for over two weeks. Aaron doesn’t mind that one bit because he loves staying home. Our quarantine is over, and he and we are fine, but the center is still closed.

We’ve still been able to enjoy walks outside, exploring some new areas and appreciating the familiar ones.

Petting Moe, our neighbor’s cat:

And loving some time on our friend’s farm:

Besides all the COVID stuff going on, we’ve also had personal changes in our life. Gary retired this past summer and we wondered how that would affect Aaron, but he’s adjusted beautifully and really enjoys having Gary home all the time. I mean, now Aaron has another set of ears to listen to all his talk…and what’s not to like about that?!

We’ve had more remodeling done, including…and MOST importantly…Aaron’s room. Aaron struggled with moving into his brother’s old bedroom. He oversaw Gary and I as we moved his desk and computer to its new and temporary location, complaining like an old man about it…hovering and huffing a LOT! He soon realized that his desk chair didn’t move so well on the new hard floor with no carpet, so he bemoaned the fact that his carpet was soon to be a thing of the past. He tried to urge Luke and Noah, our remodeling team, to NOT take out his carpet but to no avail. He also spoke to them about all the noise they were making and to please NOT turn off the electricity again!!

He is now back in his own bedroom, with the hard floor and with his furniture rearranged. Hey, if we’re pushing Aaron to adjust why not try even MORE new things, right?! He’s just happy to be in his own bed again and in his own room, so this further stretch for him is being tolerated well.

Success!

Except for our latest change. Gary and I are taking Aaron with us on a trip back east. We’re going to Gary’s hometown in the Smoky Mountains of North Carolina to help his sister after her knee replacement surgery. AND…we’re taking Aaron with us.

Aaron would rather stay home, in his own house and his own room, even though we did put that hard floor in there!

Aaron loves Aunt Sandra and will talk her ear off on the phone, but Aaron loves being home even more. It’s been a push to get him to settle down about this grand plan of traveling again. Gary and I have had to be firm. I’ve told Sandra to put on her thick skin.

Aaron wanted to talk to Barb, Paradigm manager and Aaron’s second mom, about all this trip business. She facetimed with him yesterday and it was so sweet. She helped tremendously! We may be doing that again from North Carolina!

We leave in the morning. Our vehicle will be full of Aaron’s CD’s, DVD’s, blanket, pillow, books, food, drinks, his computer, Nintendo and games, and his stuffed snake.

He is comforted in knowing that tomorrow night we will stop to stay in a hotel and best of all, we will eat out in a real restaurant.

Gary and I would be comforted in knowing that as you think of us, you would pray for safety…for Sandra’s knee surgery to go well…and for Aaron to have a great time and to be happy.

We hope to see lots of happy smiles just like this! Thank you for praying!

Home Again, Home Again!

Hello! Remember me? I really haven’t dropped off the edge of the earth, though I have felt like I’ve done just that at times. Seems like forever since I have had anything resembling a normal routine!

My husband and I just returned from a wonderful week in Texas with our daughter and son-in-law. Aaron stayed at home with a caregiver. All the preparation for our trip, our usual busy days, and then being gone surely made it hard for me to blog or to read the blogs I follow. Am I ever behind!!

But it was so worth it to be away for a WHOLE week…to have time with Gary, and with Andrea and Kyle. We had hoped that our son, Andrew, could join us from Indiana but racing is getting ready to start again and the team has more work to do than seems possible to accomplish.

Gary and I truly relaxed while in Texas. No sight seeing trips since many venues were still closed, so we spent tons of time together talking, cooking and eating, watching various shows and sermons, shopping, and so forth.

And let’s not forget the fun of seeing our Grand Dogs, including meeting Siggy for the first time.

We also got to see Siggy climbing his favorite tree!

And the patio table!

Andrea and I had lunch one day by the bay near their house.

We celebrated my birthday there on the 18^th.

And Andrea’s as well since hers happens on the 27^th.

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We celebrated Father’s Day with Kyle’s parents who came over for the day on Saturday. How fun to see Kent and Marie, and to have both dads together!

Gary and I don’t typically get to share our special days with our kids, so this time was really extra special and wonderful!

Aaron stayed at home with Karlea, our excellent caregiver. Aaron really loves it when Gary and I are gone, and he doesn’t hide it one bit. He loves all the one-on-one attention…loves going fun places…loves not having bossy parents around…and REALLY loves eating out at restaurants or getting take-out every day. Aaron was having his own version of a vacation while we were having ours!

But yet, as he always does, Aaron called multiple times every day. I didn’t answer each time but when I did I would hear Aaron usually say, “HEEEEYYYY!!” Or say no greeting at all but instead launch into whatever he had stored up to tell me about.

“Hi, Aaron,” I would say as I answered the phone.

“Mom! We went to Olive Garden today and we got a salad!! What’s that juice that’s on it???” he immediately asked one day.

Karlea had plenty of laughs, too, like the day they ate at Cracker Barrel. Aaron saw the deer mounted on the wall, rolled his eyes, and said, “I just can’t believe they took a real deer and put it in a restaurant!!”

I answered the phone for one of his calls on Saturday.

“Hi, Aaron,” I said as usual.

“GUESS WHAT???!!!” he blurted out. “You’ll be home DAY AFTER TOMORROW!!”

Then he added: “Karlea said we need to get the house stick and span!!” 😊 😊

So, we are home and life is returning to our version of normal. Shortly before our trip, Aaron and I went shopping. He had a seizure that morning, and I wasn’t sure he would feel up to going out. But he did, and we had a nice time, which made me extra happy because of how his seizures sometimes ruin his days

When we got home and sat down to eat lunch, I asked Aaron to pray.

“Dear Lord,” he began, “thank You for this food and thank You for having us a good time while we were shopping.”

There went my heart.

“Dear Lord,” I will add, “thank You for our trip to Texas and thank You for having us a good time while we were there!”

And thank You for bringing us safely home again to Aaron.

The Jam in the Road!

I broke the devastating news to Aaron a few weeks ago.

“Aaron!” I began with great excitement. “We’re going to Houston over the 4^th to see Kyle and Andrea, and YOU’RE coming with us!!”

There was a pause. I often know what Aaron’s pauses are about, but this one was a mystery. Not for long, however.

“NO!!” he replied with emphasis. “I DON’T want to go to see Andrea and Kyle!!”

“What?!” I asked. “You’re always saying, ‘Can us as a family do this or do that?’, so we thought you would love going with us.”

“I DON’T want to GO!!” he blurted out again. “I want to stay in this house, and I want Casady to watch over me!”

I was surprised at this turn of events. Aaron has traveled with us in the past, even on an airplane, and has not demonstrated this level of anger at the thought of traveling. Thus began our big summer sell…yes, sell…as Gary and I attempted to sell Aaron on this idea of taking a vacation trip with us.

Just as we would be thinking that Aaron was warming up to the idea, out he would come with another reason that he did NOT want to go.

“I just like MY house!”

“I want to sleep in MY bed!”

“I want Casady to watch over me!”

“I want to eat out when you’re gone!”

“Are we eating at a restaurant on the way to Andrea’s, or at a STORE?!!”

And even when he saw a commercial about our local fireworks, he had even more ammunition for not going with us.

“SEE??!! The fireworks start July 4^th! How can I see the fireworks if it’s not July 4^th at Andrea’s house?!”

I got lots of deep breathing exercises done during those 3 weeks before our trip. Lots.

He ran out to the porch one day when he saw me talking on the phone.

“Is that Andrea?? Let me talk to Andrea!!”

So, I put the phone on speaker.

“Andrea!! Do you have a place in the wall in your house where I can plug in my Nintendo??!”

Seriously?? Does he think that Andrea and Kyle live in a jungle tent?!

But as always, Andrea was the picture of patience as she carefully answered all of Aaron’s questions with as much seriousness toward him and his concerns as she would if she was talking to one of her genetics patients.

He told everybody he talked to…neighbors, day program staff, family…that he did not want to go to Texas. Everybody told him how much fun it would be, and that he should go and that he would love it. He didn’t care what everybody said. His mind was made up. The big sell was not working.

He and I packed his DVD player on the weekend before we were leaving. He picked out some movies. We packed his CD player. He picked out some CD’s. We packed his Nintendo DS. He picked out the game he really wanted to play along with the game guidebook. We packed his Handy Answer Geology Book because his topic of choice and endless conversations at that time was all about the core of the earth. We packed his snacks. He picked out Pringles and Twizzlers and peanuts at Wal-Mart.

There! We were all set!

Or so we thought…and hoped. Silly parents!

On Tuesday, the day before we were leaving, I had hoped to get out the door to take Aaron to his day group a little early so that I could get a pedicure. But Aaron was grouchy about having to go to Paradigm and having to go to Texas the next day. He was a simmering mess as we drove to his day group. And when he got out of the car, he threw his water bottle at the fence.

“Get in the car,” I told him. “I’m taking you home.”

But a few blocks up the road, Aaron begged me to turn around and take him back. I did. And a few miles up the road, my cell phone rang. It was Aaron, who was crying as he told me that this time he threw his water bottle at one of the staff. I turned around again, picked up my upset son…trying hard myself not to be the same…and took him home. I zipped down to the nail salon, where there was by now a long wait, so I once again headed home to finish our packing and to deal with angry Aaron.

Aaron was spent and he was sad over his actions. He walked in while I was loading some clothes into the washing machine.

“Mom?” he calmly asked. “Can we start over and forgive each other?”

Of course, my heart melted as I assured him that we could most definitely do just that. I had no idea how much forgiving was in my near future.

The remainder of that day was happy, but as bedtime drew near his mood changed yet again. He was nervous as the actual day of our trip was now a few hours away. Everything was irritating him, especially me.

More deep breathing for me as I stared down at my toes that did not have their needed pedicure.

The departure morning dawned with us having to awaken angry Aaron, who wanted none of this trip. We were finally in the car, packed to the gills, with one quick errand for Gary to run before we left town. I ran to the back of the car to adjust some things and had to smile at Aaron. There he was, earphones already in use, with all his food and music and movies and coffee and pillow around him.

We weren’t too far down the highway when Aaron decided to take a nap. This was a good thing in more ways than one.

And when he woke up, he was a new man. He was happy and talkative…in a very nice way…ready for a rest area stop and full of new life.

Maybe we made the hard sell after all?!

We headed back down the highway again.

“Can we stop for lunch?” Aaron asked. “At 12:00?”

Of course, Aaron wanted lunch at 12:00! Those who know Aaron know that he will rarely eat lunch before 12:00. There he was, sitting behind me, watching his core of the earth movie…wearing his sweater with his shoes off and his striped blanket over his lap…wearing his headphones…crunching on his peanuts…

Aaron very much wanted his normal to travel with him. The reason he did not want to take this trip is because his normal is at home, not in the car and not on the road and not at Kyle and Andrea’s. He feels no control when his normal is disrupted, and having no control is both scary and maddening to Aaron. The behaviors we were seeing was, for Aaron, his normal way of expressing his loss of normal in his life. But for us, it was very frustrating and exhausting to deal with his handling of these concerns.

It was classic Autism 101. And we were just beginning our class. We had no idea of the tests that were yet ahead. Like these storm clouds south of Dallas, we were headed into an Aaron storm.

The first one hit us about 40 miles from Houston, near the Sam Houston National Park. Not rain and lightning, but red tail lights. Those tail lights up ahead of us on I45 were not a welcome sight. Traffic jam! And not just a little traffic jam! We were stuck there, creeping along very slowly, for over an hour and a half!

Aaron lost his happy. We nearly lost our cool. The day had totally gone downhill yet again.

“Can we just HURRY with this vacation?!” he asked.

Oh, if only!!

Finally, we pulled into Kyle and Andrea’s driveway. We could hardly wait to get inside, to hug our kids and hug the doggies, to stretch our legs and our backs, and just be out of that car! Except for Aaron, who angrily informed us that he was NOT getting out of the car and he was NOT going into Andrea’s house and that he WAS going to stay in the car all night. Twelve hours in the car wasn’t enough for him?!

But I knew what was going on with Aaron. He was a nervous wreck about going inside this new house that did not hold his normal. Even the fact that Andrea was there didn’t help him at that point because her life in this strange house was just that…strange. She was married now, she and Kyle living together, and all of it was just too much for Aaron.

Gary and I went inside to barking, ecstatic dogs…to hugs from Andrea and Kyle…to the smell of supper and the warmth of family. But poor Aaron, still out in the car, was only anticipating a very unfamiliar and uncomfortable start to this vacation.

My heart went out to him even as I battled my desire to yell at him. One day in, and this vacation was not the happy time that I had hoped it would be.

I went outside, where I found Aaron struggling to gather up and carry as many of his things as he could. He would carry as much of his normal into this strange house as he could! Finally, he headed toward the door, his arms as full of his blanket and movies and music as he could carry.

I got him in the house, then went back to the car for some things, and when I walked into the kitchen a minute later there stood Aaron, talking for all he was worth about the core of the earth. It was so classic! So totally Aaron! And so lovingly Andrea as she sweetly conversed with him about a subject so out there…but again, so Aaron.

Andrea walked with us upstairs to the bedroom Aaron was using. She had it fixed just perfectly, complete with a big soft stuffed dog bearing Aaron’s name, perched on the bed. She knows her Aaron so well! We showed him that Andrea and Kyle did indeed have outlets in their walls! We got all his devices plugged in. We showed him how his bed would be just fine…how there was a lamp on the table beside the bed…how he could see at night with the light from the window. He was relaxing, at least a little, though still full of concerns.

He didn’t want to come to supper, but finally he did come down. He ate, all the while talking to Kyle about Star Wars matters. Kyle engaged him perfectly on that topic. Aaron was literally shaking all over, partly because of pent-up nerves and partly because he was SO excited to be talking about one of his favorite subjects with someone who knew all about it, too.

The next three days were quite a mixture for all of us. Aaron was at one moment happy and funny, and the next might be angry and insulting. He had some good times when Kyle’s mom, dad, and cousin came over for the 4^th. We ate burgers and watermelon and watched some fireworks. He spent a little time here and there petting the dogs. But he didn’t want to go anywhere, and we knew not to push him. He was happiest when we went out to eat one night. But we didn’t take him to the beach or a museum or shopping. Heat and crowds and Aaron’s mood was a volatile mix. It was not the vacation that I had hoped it would be.

Aaron was more than ready to leave on the morning of our departure. “I want to live in MY house, not HERE!” he declared. Nice.

Aaron’s normal was spread around him on the back seat as we made good time leaving Houston and trucked up the highway toward Dallas. But south of Dallas we saw them…the red lights of stopped cars!!

“Is that a JAM in the road?!” Aaron asked, almost in a panic.

“I’m afraid it is,” Gary answered. And sure enough, we crept along again for over an hour due to an accident up ahead.

Later, in Oklahoma, we had another slow down for construction. Aaron got so that every time he saw backed up traffic ahead, he would ask the same question.

“Is that a JAM in the road?!”

How perfectly that describes our life with Aaron…and not just on this vacation, but nearly every day.

We get jammed up trying to understand and manage Aaron’s behaviors…his way of thinking…his expectations…his demands. We are forced to move at a much slower pace than we want because Aaron won’t respond to any other speed than his own.

“Oh, he’s just autistic!”

That’s so easy to say, but wow, the complexity of what this autism involves!

I cried twice at Kyle and Andrea’s. Cried out of sheer frustration, disappointment, anger, and sadness. Cried because I realized how tied down and unusual our life is with Aaron. Then came guilt because I felt that way.

UGH!!!!!

I was anxious to get back in my Bible on Monday morning. Nothing comforts me and encourages me like opening God’s treasure chest full of His words. One thing I read in a devotional book I’m using was Psalm 12:6:

“And the words of the Lord are flawless, like silver refined in a furnace of clay, purified seven times.”

Boyd Bailey said, “The Bible is our handbook for holiness and happiness. We steward it well when we honor it above our own wishful thinking.”

My wishful thinking about life with Aaron isn’t what often honors God or helps with our big road jam. But when I read the Bible and listen to God, I do find what Boyd Bailey also says: “We listen for instructions in our obedience. We listen for encouragement. We listen for rebuke. We listen to the Lord’s flawless words because we know we are loved by Him.”

The traffic jams on our road with Aaron will continue. They will come and they will go. Up and down. I mess up. I don’t have all the answers.

But I know where to go for all that I really need, and for God’s Word and for His love I am ever grateful.

God knows the road ahead for us with Aaron. The map of His Word will guide our attitudes as we journey. God will go before us, behind us, and most importantly He will be beside us.

There isn’t a jam in any road that’s too big for God!

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