One recent night, after Aaron and I had watched an episode of The Waltons, I had a brilliant idea. Now you must understand that after the program we are watching is over, Aaron wants the television off. No watching ANYTHING else when our show is over.
Don’t ask me why. Don’t ask me to explain many of Aaron’s quirks. He has his own rules in his own way, and he expects us to abide by those rules. If we don’t…well, it’s not utopia around here.
Back to my brilliant idea. During our last visit to see our daughter and son-in-law, Andrea had shared a fun song with us. She played it on YouTube, on their big screen TV, and I LOVED it. The song is Sea Shanty Medley by Home Free.
Fast forward to our house on this particular night as Aaron and I finished watching The Waltons. I wisely decided that while Aaron cleaned up the multiple snacks he carries to the family room to tide him over during our show, and while I finished my before-bed chores, that I would turn to YouTube on our new big television and listen to Sea Shanty Medley.
So, I did just that.
And Aaron became unglued.
Watching something…ANYTHING…after our show is not allowed.
“MOM!!! Turn that OFF!!” he exclaimed.
And I…being the kind mother that I am…turned the volume up a tad.
Aaron also turned his volume up more than a tad.
So I…remember my kindness…played the song a second time.
Let’s just say that it was quite a relief when Aaron finally fell asleep later.
The next night, after watching the next Waltons episode, Aaron’s head jerked around to me as soon as the last Walton’s goodnight and musical note was over. He was checking to see if I clicked on YouTube again.
“MOM!!” he loudly said, “don’t listen to that UTOPIA music like you did last night!!”
Oh my goodness, how he can make me want to laugh in the middle of my frustration!
I wanted to correct him.
“It’s YouTube, Aaron, NOT utopia!! Believe me, this is not utopia around here!”
But I didn’t.
However, his comment has made me think a lot about our version of utopia.
Utopia – defined as a place of ideal perfection especially in laws, government, and social conditions.
Aaron’s version of utopia centers around his desire to have his life ordered in those rather eccentric ways that matter to him. We do it this way every time, people! If we cooperate, then his life is a place of ideal perfection. Never mind that ours is not.
But life doesn’t work that way and therefore Aaron’s utopia gets all jumbled up…as does ours.
Yet even more important is our attitude concerning this utopia idea. Gary and I do get tired of Aaron’s ups and downs…of how verbal he can be when he is angry…of how tiring it can be to try to meet his utopia demands while keeping our own in mind.
One evening, Gary and I were particularly spent. We snuck out to our front porch and sat in our rocking chairs, breathing at last without Aaron’s interruptions.
But then this happened.
It was another moment when our attitude was tested. And we have learned that it’s best to adapt to each of these moments with as much kindness and laughter as we possibly can. Easier said than done some days.
Back to our utopia. We have changed our own personal definition of utopia as we have parented Aaron over the years. Our satisfaction and joy must be centered in trusting God. In knowing that where He has placed us is where He will give us what we need.
Let me share with you some beautiful pictures of our utopia.
The pure delight of bubbles:
The sweetness of sharing a beetle with Mollie next door:
The delight he finds in animals:
The fun he creates out of the mundane:
The happiness found in a simple game:
The rapture of all that cheese on his pizza:
Our attitude is of utmost importance. Our attitude determines our joy. We can always be looking at that other definition of utopia…an imaginary and remote place of perfection.
Or we can resolve to look at our utopia in the face of our special son.
Last Friday when I went into Aaron’s room to wake him up and get him going for the day, I knew that something was off. Sure enough, Aaron’s bed was soaked. He had a seizure the day before, but I hadn’t heard one that previous night, so maybe he just drank too much water before bed. Thoughts of that continuing issue with the amount of water he drinks made me a little irritated.
So did the fact that because of so many other things going on…and now tons of laundry to do…I had to cancel lunch plans with a friend I hadn’t seen in forever. This was our second time to cancel. GRRRR!
But I’ve learned to look at the positives at times like that. I have a washer and dryer, and they work. I have the time and freedom to change my day around. And now Aaron’s bedding would be totally clean and fresh. Every single bit of it…from the mattress pad up! Oh, and I am ALWAYS very thankful for a super heavy duty and trustworthy waterproof mattress pad! Am I ever!
The rest of our day went as planned. I picked Aaron up from his day group, we went to Wal-Mart, got subs for supper, watched a qualifying run of NHRA racing, and had a nice time with all of it.
Later, not long before I was going to get Aaron from his room so we could watch a Walton’s episode, I heard a thump. I was sure it was from his room. I heard him walking so I knew it wasn’t him. Soon he was in the family room, looking at me with some hesitation on his face.
“Mom?” he asked in a measured tone. “Can you come to my room? I need to show you something.”
I was comfortable on the couch. It was nearing 8:30. I was winding down physically and mentally. I was in no mood to go to his room and probably look at something on his computer that he just HAD to show me.
“Aaron, I don’t want to go up to your room right now. Let’s just watch The Waltons,” I countered.
“No, Mom!” he insisted, “I need you to come up to my room now!”
Then I remembered the thump.
“Aaron,” I began with more calm than I felt. “Did you break something?”
“Yes!!” he answered. “It was my lava lamp!”
Now, you must understand that this was not just any lava lamp. This was a GLITTER lava lamp.
I was such a good mom at that moment.
“OH AARON!!! YOU DIDN’T!!!!” I not-so-calmly replied.
I did not want to walk up those stairs.
I did not want to walk in his room.
I did not want to see what I soon saw.
There, on the floor beside his bed and under his bed was thick blue oozing goo.
And not just any goo.
It was thick blue oozing GLITTERY goo!!
Let me tell you, I groaned and I huffed and I puffed and I complained the whole entire time I was cleaning up that awful mess.
Poor Aaron wanted to help but there wasn’t much he could do. I knew that there wasn’t room for both me and Gary to be in there working so I didn’t even tell him what was going on. I just continued to bluster and blow as I sopped up the thick mess with a couple of old beach towels. I even told Aaron to just throw them away. I didn’t want eternal glitter in my washing machine!!
My washing machine, which had been running a good part of the day already as I cleaned up Aaron’s OTHER big mess!!
Oh, how my mind was working! Poor me!! My life is all about overseeing and cleaning up one thing after another! Boo-hoo-hoo!!
But I looked up from where I was kneeling on the floor trying to shine a flashlight under the bed so I could see sparkly goopy glitter hiding out…and there was Aaron sitting cross legged on the bed, telling me over and over that he was sorry.
Wanting more than anything to DO anything to help me.
My heart kinda broke for him and I felt such empathy for him.
That’s grace…not the kind that I can create, but the kind that God puts in my heart for this special son who can surely push my buttons but pull my heart strings at the same time.
Later, after all the clean up and after the Walton’s was watched…as we got Aaron’s bedtime routine completed…a storm rolled in. If there is one thing that Aaron absolutely loves, it’s a storm.
“Mom!! Do you think I should keep my blinds open?”
I told him yes and to enjoy the lightning. I was going to bed, finally, and that is all I wanted to do.
But that’s not all that Aaron wanted me to do.
“MOM! Come look at the lightning! It’s BRIGHT!!”
Soooo, I stifled my huge sigh and walked once more into the room that twice already that day held so much frustration for me.
I stood at Aaron’s windows for a minute and soon there it was…FLASH!! Bright lightning, followed by Aaron exclaiming, “Did you see that, Mom??!!”
I sat on the end of Aaron’s bed and immediately he threw back his covers. In another flash, he was right beside me, and there we sat watching the impressive light show, brought to us by God.
And I was ever so thankful for God’s grace in that moment. Grace from Him to me and Aaron in the form of such bright beauty out that window.
Grace to have my tired mind and body refreshed as I sat there enjoying all the sights and sounds of a good Kansas thunderstorm.
Grace to forget the messy day and to focus on happy Aaron.
God extends that kind of grace to me every single day.
How can I not also extend it to Aaron in the midst of dirty bedding and glittery lava lamp mess?
Thank you for Your grace in all my messy places, God.
And thank You for giving me the grace to show Your grace to Aaron.
However, I do not believe I will be buying another glitter lava lamp. 😁😁
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:
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?
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.
I ended my last blog by saying that we were taking Aaron to the zoo. I wish you could have seen his excitement and joy at being there with me and Gary. He has a way of jerking his leg when he’s excited, like a little kick, and he did that multiple times. He laughed so loud that we had to tell him to tone it down several times. But his joy gave us such joy, especially after the sadness of the day before. https://hesaidwhatks.blog/2021/04/27/the-autism-two-step/
This was my favorite picture of the day. He and the gorilla had a moment, and how I wish I knew what that gorilla was thinking!
I sent the picture to our kids and told them that Aaron was the one in the white shirt. Just kidding, just kidding!!
Then Andrea said, “That gorilla looks a little miffed.”
“I think he’s been around Aaron,” I told her. “I’ve seen that look on all our faces.” 😊 😊
On Wednesday, when I picked Aaron up from his day group, he came to the car carrying these.
His friend, Victoria, celebrated her birthday the day before when Aaron was at the zoo, so she saved some balloons for her buddy. Now Gary has a balloon by his desk, and I have two in our bedroom. Aaron does love to share.
Like today, after Meals on Wheels, he decided he would save this for Gary.
One French Fry.
But that one French Fry was very important to Aaron, there among his chicken tenders he brought home. He immediately gave it to Gary when we walked in the garage, to eat right away, want to or not!
Aaron can bounce from one thing to another, and one mood to another. Gary and I are along for the ride on most days. I sure am thankful to know that God is our driver, though, in the long run.
Aaron has an MRI of his brain in the morning, just to double check that nothing is going on. It’s been a long time since he’s had one and his seizures have been a little weird lately, so it’s best to be safe.
I’m praying for no seizures tonight so we can go tomorrow. Praying for good results. I would really appreciate your prayers as well, for which I thank all of you VERY much!
Like I said, how good it is to know that God is in the driver’s seat!
And Aaron is in the front seat, too, if he has his way because he is ALWAYS in the front seat and he must listen to his current music CD and if there is more than one of that group it must be played in the right yearly order and he must control when it comes on and when it goes off and keep track of which song is playing and what number it is and what the title is and……..
Last week Aaron was extra grouchy every morning when it came time to get out of bed. Nothing I said or did made a difference. Nothing Gary said or did made a difference, either. So, it seemed we were stuck in perpetual morning grouchiness.
Believe me, Aaron can re-define what it means to display said grouchiness. Can he ever!
I have many AAAAAHHHHHH moments when he is on that level of refusal to get out of bed. Aaron can be very verbal, and not in a nice way, when he is tired and sleepy at the beginning of his day.
Therefore, I sometimes tell him that I am done and then I disengage. I don’t respond to his words or his demands, and I tell him that the decision about his day is his to make. He eventually settles down and all is well.
Last Thursday, our Meals on Wheels delivery day, saw Aaron once again very angry about getting out of bed. I quickly decided to get off that path, telling him that I would go without him and proceeding to get ready to leave.
Aaron could not bear that thought. As we drove to the senior center a while later, Aaron’s mood improved. His music made him happy as did the thought of eating lunch at a restaurant after our deliveries.
Aaron was very helpful and he enjoyed seeing our clients, as well as the various dogs and other animals that we have come to know.
“Mom, did I do good today?” he asked as we finished at our last house.
I assured him that he did just fine, and he smiled happily as he rubbed his hands together.
Soon we were at Jose Pepper’s being pampered by Emily, our server that we have come to know. She loves Aaron and is excellent with him.
We were munching on chips and salsa, along with a free espinaca, when Aaron’s salad arrived.
“OK,” Aaron said, “let’s pray.”
I love it when the praying part is his suggestion. I also love it when he agrees to ask the blessing, which he did on this day.
Now Aaron’s prayers are always two sentences, and they are always thanking God for things. He might say, “Thank You for the food and thank You that we got to go to Meals on Wheels.”
But on this day, as we bowed our heads, Aaron got completely off script in a very wonderful way.
“Dear Lord,” he said, “next time on Thursday will You help me do better about going to Meals on Wheels?”
I seriously cannot remember Aaron praying like that in a very very long time. Maybe ever. My heart was so touched and warmed by his simple yet heartfelt prayer.
Aaron does feel things much more deeply than we usually know. It’s hard for him to process his feelings and thoughts in a controlled way when he’s frustrated. Hard for him to let us know what it is he is feeling without hurting OUR feelings.
We enjoyed our lunch so much, even if Aaron wasn’t totally sure what he was eating.
“Mom? What’s this green stuff?!”
Being color blind makes Aaron’s life even MORE interesting…and ours as well.
Green food and a great prayer.
Thank you, Lord, for those blessings.
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.
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.”
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!
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!!
Life has been pretty tempestuous and I’m not just talking about a whirling mess out in the Gulf by the name of Laura. We’ve had our own commotion under our roof. Hurricane Aaron has been building for several days and the other night we were inundated with his storm surge. Honestly, though, my outburst was stronger than his by a long shot!
Ah, the wonders and joys of autism. Aaron wants…needs…routine and predictability and all his things in all their proper places. Upheaval of any kind creates stress for him, and stress for Aaron inevitably creates stress for Gary and me as his parents and caregivers.
The stresses around us that cause us angst do affect him because his level world is easily tipped by what Gary and I are going through. Aaron expects us to stay as level as he needs us to be, but we all know that life just isn’t that way.
When Aaron sees Gary and me off kilter, he will then seek to identify what is bothering us. Then that person or that event becomes the enemy because they have affected him. Aaron doesn’t mean to be narcissistic. That delightful character trait is part and parcel with autism. We know that fact in our heads but sometimes the understanding doesn’t transfer to our hearts during the turmoil.
Several events have impacted us over this past week. A hoped-for trip to Indiana to see our son didn’t happen. Disappointment over changed plans crept in.
Then last week we grieved with our daughter and son-in-law, Kyle and Andrea, over the sudden serious health issues of one of their beloved dogs. Aries started having seizures. The next week was heart-rending as he declined drastically. So, this past Friday they made that awful end-of-life decision. Gary and I were so sad, but I also think that seeing our children’s grief increased our own. We loved Aries, and we love Kyle and Andrea, so our sorrow was two-fold.
This is the prayer Kyle prayed the night they said goodbye to Aries:
Aaron really can’t handle seeing us cry but try as we might he did see our tears over the loss of Aries. We now had the double whammy of changed trip plans and heartbreak over Aries.
However, we were only halfway done with disruptions. Out in the ocean, Tropical Storm Laura was brewing. Kyle and Andrea live to the east of Houston, near the water. Kyle works on a fast responder ship, and those huge vessels don’t stay in the harbor during a hurricane. Fast forward to today: Kyle is now on the ship up in one of the channels and will stay there indefinitely. Andrea is home alone with their other 3 doggies. She knows she is welcome to go to Kyle’s parent’s home a little further inland but it’s not best to leave your home if you can possibly stay. So, Gary flew to Houston yesterday and is there with her, which is such a comfort. His retirement a month ago is a blessing!
Aaron senses our concern about all this hurricane business. He usually likes to watch the progress of hurricanes, but not this time. Why? Because Gary and I are spending too much time, in Aaron’s opinion, monitoring Hurricane Laura…wondering about Kyle and Andrea…planning Gary’s sudden trip…and talking on the phone. No matter how calm we are, all this time and talk is unusual to Aaron. Sometimes it takes time away from Aaron.
On Monday evening, as I finished looking once again at the Weather Channel, Aaron became rude and I became undone. I lost my temper and lost my cool, and Aaron reacted, and we had our own tempest in the family room. These things do happen, especially when we are stressed, but then the tension and guilt are increased. It takes some doing to un-do it all.
Aaron paced in and out of the family room where I still sat. We tried to watch a Little House episode but he just could not settle down so he chose to end it and go to bed. But he kept coming back to me with one more word of anger. Then he finally stood in front of me.
“I know what I’ll do!!” he belligerently said.
And with that, he stuck his tongue out at me.
I tell you, I just had to laugh. He didn’t mean for it to be hilarious, but it was. I kept my laugh to a minimum and somehow he didn’t get more angry, but it was just really funny.
I knew when Aaron was finally OK by what happened soon after. He came bounding once again into the family room, stared at me, and then said:
“Mom? Do you know what a sea mine is?”
A sea mine?! But I was actually quite relieved to be talking about sea mines. Aaron is playing Battleship on his computer, so talk of sea mines was perfectly normal for him. It showed that he had at last moved beyond our anger and beyond the unsettled surroundings of his world, and he was back to his normal. I didn’t care one bit about sea mines but trust me, at this point sea mines were a very welcome reprieve!
Aaron’s normal rarely involves human emotion or important life events that impact us. These issues cause him distress, so he quickly reverts to talk of battleships and sea mines and gun turrets and whatever else comprises his focus at that time. Gary and I so often shake our heads, but we know we must jump on board with Aaron in order to preserve our peace. It’s both very frustrating and very fascinating to see how his mind works.
There is one more thing going on. Aaron’s bedroom remodel begins tomorrow. Gary and I had to empty it before Gary left for Houston. That caused some anxiety, to say the least. But beyond that is the fact that now Aaron is in another bedroom where all his things are NOT in their normal place.
“Mom!! This bed isn’t like my bed!!”
“Mom!! I like my lamp better!!”
“Mom!! I don’t like this hard floor!!”
“Mom!! I hope I’m not getting a hard floor!!”
“Mom!! I want to keep my carpet!!”
“Mom!! My chair doesn’t work right on this hard floor!!”
Shall I continue?
No. But Aaron will, trust me.
I took Aaron to Outback yesterday after we dropped Gary off at the airport. Aaron was in his happy place…a restaurant with his choice of food! As we munched on the warm bread and butter, Aaron looked down at the two pieces left on the cutting board.
“Mom,” he said, “you can have this one and I’ll have the other one.”
I laughed because the one he generously gave to me was the much smaller piece while he got the bigger one. And it just reminded me of how life is with Aaron. He doesn’t mean to be this way, but he does require the bigger part of our time and of our understanding and of our attention.
Therefore, Gary and I require a bigger part of God’s grace and God’s understanding and God’s strength on days such as we have had this past week.
And God’s forgiveness when we blow it.
I’m so thankful that He understands.
And I was so thankful to see Aaron smile yesterday as I was able to restore some of his normal. It’s my responsibility, yes, but also my joy as his mother and his caregiver.
By the way, in the eye of the storm there is peace. God’s peace, which never fails, is there for me.
I’m thankful for that, too, during each storm!
“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.
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.
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.