Special Needs Children – Page 10

Did Someone Say, “Time CHANGE?!”

I am 99.9% certain that whoever thought up all this time change business did not have a child living with them who had autism. Specifically, a child with autism who has as one of their obsessions the desire for living life with precision timing.

Such is our Aaron.

Aaron wears a watch every day of his life. If his watch breaks, time for him stands still…and time for us is nearly unbearable until the broken watch can be replaced. Trust me, we take as little time as possible in finding him a new watch. It must be a specific watch, one with numbers all around…a second hand…and the day and date feature.

Heaven help us when the day and date feature needs to be adjusted! Aaron doesn’t have time to wait for that, either, and when I mess it up…which I so often do…then the world is off balance for Aaron until Dad is able to come to the rescue.

Many of you have heard lots of stories about Aaron’s precision with time. For instance, on the weekends Aaron wants to eat lunch at 12:00 noon. This often happens:

Me: Aaron, do you want to eat lunch?

Aaron: Yes.

Me: What do you want to eat?

Aaron: Can I have pizza?

Me: Sure. I’ll fix it now.

Aaron: I want to eat at 12:00.

Me: Well, it’s almost 12:00.

Aaron (pushing his sleeve up to look at his watch which is worn halfway up his arm): No, Mom! It’s 11:56!!

I sigh, exercising my lungs as I so often do with Aaron, and make sure we wait until 12:00 on the dot to start the lunch process.

Here’s another familiar scene:

Aaron: Mom, I woke up at 7:58.

Me: So, you woke up around 8:00?

Aaron (looking at me as if I had three eyes but no brain): No! I woke up at 7:58!

I began preparing Aaron for the dreaded time change on Saturday afternoon. When we finished watching our DVD before bed, he glanced up at the clock in the family room.

“Mom,” he began. “It’s 10:47, but it’s really 9:47, right?”

I assured him he was correct as he followed me into the kitchen. He carefully watched me change the stove clock, the microwave clock, and the coffee pot clock. Things were progressing smoothly.

Little did I know.

The bedtime routine was moving along normally when Aaron sat on his bed to write the time in his logbook. This logbook in which Aaron records…precisely records…his time to bed and his time to get up. Every. Single. Day.

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Aaron stared at his complex weather station clock beside his bed…the one that needs a person with an engineering AND rocket science degree to change the time.

“MOM!!!! My clock says 11:02, but it should say 10:02!!!”

WHY DIDN’T I REMEMBER AARON’S CLOCK?????!!!!!

But outwardly I was the picture of calmness. I told Aaron that I really thought it would set automatically by satellite. Aaron sat on his bed with his logbook open, very still, staring at the clock as if he could will it to change. I stood beside the bed, staring at Aaron as if I could will him to change.

Silly Mom.

He scooted off the bed and headed for the door.

“I’m getting Dad!” he informed me as he left his room.

Thump, thump, thump down one set of stairs.

Thump, thump, thump down the second set of stairs.

Soon I heard Aaron pounding up both sets of stairs. Seriously, he takes stairs like a bull elephant.

And there followed Gary, much slower than Aaron, who was full of purpose.

“Dad, can you set my clock?!” he asked anxiously.

Gary set the clock, Aaron sat once again on his bed with his logbook open, and I stood there waiting hopefully for the time to be entered, precisely.

Aaron stared at his weather station clock. Then he pushed his sleeve up and looked at his watch. He stared again at the blue numbers on his very difficult weather station clock.

“MOM!!!! It says 12:10!!!! It should be 10:10!!!!!”

Oh. My. Word.

Dear Gary, in his tiredness, had set the clock AHEAD an hour. Instead of falling back, we had gone full speed AHEAD…and Aaron was full speed DONE with this crazy time change!!

SO WAS I!!!!!!!!

“Aaron,” I kindly said (despite how UNKIND I felt), “can’t you just lay down, close your eyes, and go to sleep?”

It would have made more sense to tell him to climb Mt. Kilimanjaro…barefoot…in the dark…with no guides…and no supplies.

I wonder what time it was in Tanzania?

Aaron informed me that he could do none of those things. Lay down, close his eyes, or go to sleep.

“Aaron,” I continued (my lips drawn tighter than they had been), “can’t you just wear your watch to bed?”

With that, Aaron once again pushed his sleeve way up his arm and stared down at his watch.

“MOM!!!!” he said, “we need to change the time on my watch!!!”

AAAAAAHHHHHHHHH!!!!!!!!!!!!!

Anyway, I prohibited Aaron from going back to get Gary. I changed the dumb time on his watch. I then sat down on his bed, praying as I started pushing buttons, and somehow someway I was able to change the stupid time from 12:10 to 10:10.

Can you tell I was done? I needed a time out!!!

Oh, but we weren’t done!

Aaron was, once again, sitting on his bed while staring at his ridiculous weather station clock. Whose idea was it to get him this clock anyway??!!

All the bases had to have been finally covered, I thought. Aaron’s just waiting for the minute to change, as he usually does, before he will write down the time.

The EXACT time, for crying out loud!!!

“MOM!!!!” he nearly yelled, “it’s FLASHING!!!!!”

“WHAT????!!!!” I nearly yelled in disbelief. “What’s FLASHING????!!!!”

And sure enough, under the very current and precise time, there was flashing the words, “NO WI-FI.”

“It says, no wifey,” Aaron told me.

“You’re about to hear, no mother,” I wanted to say, but didn’t.

“Here, Aaron,” I said now through almost gritted teeth, “you can just turn your weather station clock around like this and then go to sleep.”

But I may as well have told him to climb….

You get it.

No, Aaron could NOT just simply turn the clock around like this or just go to sleep like that. Not with “NO WIFEY” flashing under the very perfect and totally precise time!!!!

I guess Aaron was spent…or knew that I was…because he finally got under his covers and let me escape to my room.

But soon I heard him thump, thump, thumping downstairs…where he told Gary about the flashing “NO WIFEY.”

Then came the thump, thump, thumping upstairs…and the elephant stomps to my closed bedroom door.

“Mom?” he said. “I’m tired of this day.”

“I know, Aaron,” I told him. “I am, too.”

Never were truer words spoken!!

He walked back to his bed.

He was soon back at my door.

“Mom? Do you think I should just wear my watch to bed?”

“I think that would be a good idea,” I replied (hopefully!).

Again, he was under his covers.

“MOM!!!!” I heard from the monitor in our room, “it quit flashing!!!”

Thank you, Lord!!! I really did thank the Lord!

But if you ask me, it’s high time to change the time change!!

At least it is in OUR house!! WHEW!!

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A Sweet Touch from God

Aaron saw the commercial for Pumpkins at the Park, and soon after he was telling Gary and me all about it. I had already seen posts about the event on Facebook and had told Gary that we should take Aaron, so with Aaron’s excitement already abounding I knew it was a match made in heaven. Tickets were ordered and plans were made to drive the mere mile and a half up the road to Tanganyika Wildlife Park on the following Saturday night to experience some pumpkin Halloween fun.

Aaron, who must plan multiple details before any occasion that he will attend, began to ask questions and to get his mind organized for our fun night. His list included:

Will I need a coat?
Will I need gloves?
Will I need a hat?
Will there be lots of people there?
Will there be food to eat?
Will the animals be out?
What time will we leave?
What time will we get home?
Do we have tickets?
Where are the tickets?
Mom, why are you sighing?

I answered all but the last question…multiple times. Which is why I was sighing, but Aaron doesn’t know that. It wouldn’t matter if he did. He just knows Mom’s weird that way and by the way, “Will I need a coat?”

Sigh.

But this is Aaron, and we totally expect the repetitive questions and ultra-planning. His comfort level depends on it, and trust me, we want his comfort level to be high…especially since our comfort level is so closely tied to his. Like, totally tied to his. COMPLETELY TIED!!

OK. Moving on.

As Gary and I climbed into bed on Friday night, the monitor beside us on my nightstand turned on to listen for Aaron, I told Gary that I sure hoped Aaron wouldn’t have a seizure during the night. You see, a nighttime seizure nearly always means a daytime seizure or more the following day. I didn’t want Aaron’s much anticipated Pumpkins at the Park to be ruined.

Wouldn’t you know that at 11:58 I heard a seizure. My heart dropped more than it usually does. Why on this night of all nights must he have a seizure? I was so sad for Aaron as I went to help him, and then returned to my own bed when the seizure was over, and Aaron was safe.

Surprisingly, there were no more seizures that night. But in the morning, Aaron’s eyes and actions showed that he was still feeling the effects of just that one seizure. I feared more would certainly come. He couldn’t even stay awake for his coffee, and later slept on the couch for awhile.

Still, no seizure.

When he napped in his bed later that afternoon, I thought for sure he would have one because that is what’s typical. I listened closely as I carried the monitor with me around the house.

And still, no seizure.

All day long, as we worked outside and as Aaron hung out with our little neighbor’s boys next door, no seizures.

And that evening, there we were at Pumpkins at the Park.

Aaron was totally ecstatic, and that’s no exaggeration. He didn’t stop smiling the entire evening.

We went from this:

To this:

Look at his smile!! Isn’t that just awesome?!

He loved every single part of the park that evening. The scary:

The spooky:

And the sweetness:

Speaking of sweet, I especially love this sweet picture of Gary and Aaron walking on the path.

And I love the sweet touch from God we all felt on that day. It was sweet to spend that time together and not have it ruined by seizures.

Sweet to have this special memory tucked away in our hearts.

Thank you, God, for such a sweet touch from You!

Keeping Everything in A Row

Aaron was busily preparing his little corner of the world one recent night as we got ready to watch an episode of Dr. Quinn. His typical preparations include his snack or snacks of choice, often placed in a bowl; his drink; his hand towel that is always with him; his blanket that is always over him as if he is a nursing home resident; his Nintendo DS beside him even if not played; his video remote; and his chair and ottoman placed just so.

It’s exhausting, unless you’re Aaron. If you’re Aaron, this is standard procedure and no big deal.

On this particular night, Aaron had chosen his rather new bag of Jolly Ranchers to sit on the end table beside him…the end table that bears the scars of being placed right beside Aaron.

“MOM!!” Aaron excitedly said before he sat down. “Here! I want you to have these!”

He handed me way-too-many Jolly Ranchers, his face full of delight because he loves to share. I hadn’t planned to eat Jolly Ranchers, but I wouldn’t disappoint his giving spirit for the world, so I cupped my hands and took his sweet gift.

He was getting situated under his blanket when he remembered something.

“Wait!!” he exclaimed. “I need to get my trash can!”

Having lived with Aaron for so long, I didn’t need to ask what he was doing. There are times that Aaron will use his trash can…and ONLY his trash can…for certain jobs. For instance, every Christmas Aaron must have his trash can with him for whatever he deems it must hold, despite the large trash bags that the rest of us use.

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For whatever reason is in his mind, he knows when his trash can is the one that is needed for certain trash, and obviously our Jolly Rancher wrappers fit that mold on that night.

Soon we were watching Dr. Quinn, relishing our candy as we happily tossed our wrappers in the correct trash can perched between us…and all was right in Aaron’s world.

Like the Bible verse that says there is a way that seems right to a man, there is most assuredly a way that seems right to Aaron…and he will not veer from it, if at all possible. Pity you if you try to make him do so!

Yesterday, Aaron and I piled in the van for our ride to his day group. Aaron loves listening to music and as we are still in dinosaur mode, we use CDs. Aaron looks at each song’s number as he picks up the CD and checks the back for the song number and name. He rubs his hands together with great enjoyment, laughs, and listens very carefully to each song.

Aaron often sings one phrase from the last song he has heard on his rides. He will sing that phrase over and over, usually at home, while he is on his computer. Never will I forget the time that we stopped to shop at Wal-Mart. The last song he had heard was Shania Twain’s “Man! I Feel Like a Woman!” It was very interesting hearing Aaron walk through Wal-Mart and in his monotone voice saying more than singing…over and over – “Man! I Feel Like a Woman!”

The word “interesting” really doesn’t do it justice. Though I’m sure that he and I were VERY interesting to more than one person on that trip.

Anyway, Aaron had chosen to listen to Brad Paisley. We have several Brad Paisley CDs. Something else that Aaron will do is listen to CDs by the same artist in order of their production date, written in microscopic print on the back of each CD. Print that is seen only by Aaron. We cannot listen out of order. Nope.

We jumped in the van, with Aaron immediately reaching down to find the first CD in order, of course. And of course, he knows that the first Brad Paisley CD in the correct order carries the date of 2003. And the 2003 CD was not in the van.

We were still in the driveway, both of us looking for the 2003 CD, even getting out of the van to check behind our seats. I ended up running back into the house and finding three CDs in the cabinet that he had missed.

“YES!!” he said, “there’s the 2003!!”

His joy was contagious as we drove down the road, his hands rubbing together quickly and his laugh filling the van. What a difference it makes when Aaron can have things this seemingly unimportant set right in his world!

Last night, Aaron sat in his chair in his usual fashion as we watched TV. I noticed that he was pulling loose threads from his ever-present hand towel and rolling the threads up into little balls. Later, as we were on our way upstairs for bed, this is what I saw on the end table.

I just smiled and shook my head. How like Aaron and his life are these little thread balls, all rolled up and placed in a precise order according to Aaron’s plan!

And how important I felt it was for me to just leave them there. I could have told Aaron to come back down and clean up his mess! But this really isn’t a mess. This is Aaron’s order, done Aaron’s way.

It’s really a beautiful picture of Aaron’s mind.

And a reminder to me that there are many times when I must understand Aaron’s way of living…a way unlike my own but of no less value. Not try to brush it off as unimportant or messy or inconvenient, but to remember that Aaron is far happier if he is allowed to keep not only his ducks in a row, but also his CDs and his trash can and his candy…

And his thread balls!

Of course!

Fixing the Broken

Last night I felt like this:

Mangled. Broken. Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group. Mixing all the various special needs can at times be volatile. Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair. I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later. I hoped that maybe, just maybe, they really weren’t beyond repair. The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

WOW!! Talk about a miracle re-do of what I thought was hopeless! She received my profuse thanks with a smile on her face and the comment that she loved a good challenge. I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually. I believe that about covers it. And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty. Talking about being truthful, Aaron is just that…at least in his mind. He has few filters, and totally does not get social norms. He is often unaware of other’s feelings. He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning. His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired. I get angry. I did last night, when Aaron who had been happy decided to be rude just before bed. He and I didn’t have our normal cheerful bedtime routine. He was still out of bed, on his computer, when I went to bed. I didn’t even challenge him. I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron. Somehow, it’s easier to show compassion for ones I seldom or only occasionally see. Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add. I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile. He even received the hug I offered! We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights. I had intended to sit there and pray, but sitting with Aaron was important, I knew. We talked softly about some of this and some of that. Then Aaron decided that he could take his pills, but I reminded him that it was too early. He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm. I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule. Gone was my caring at all at that point about the 12-hour rule! In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh. Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot. But today Aaron let me laugh. This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters. Or the 12-hour rule.

But it was good. Very good.

It was our normal.

And it was a gift. A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.” (Psalm 147:3)

Cool Aaron

My phone rang the other day and even before I looked, I pretty well knew it would be Aaron making his daily call from Paradigm, his day group. Yep, there was Aaron on the other end of the call, talking the second I said “hello.” He was excited and laughing about Chris, one of the Paradigm staff.

“Mom!! Me and Chris are playing a game where I can’t talk!”

Well played, Chris, well played! I just thought this. I didn’t say it to Aaron.

“But Aaron,” I replied, “you’re talking now.”

“HAHAHAHAHAHAHA!!!!!” Aaron bellowed. “I guess I forgot the rules!!”

I laughed as well. In fact, it felt very good to be laughing with Aaron. I never know when I pick up the phone in what condition I will find Aaron. Happy, sad, mad, crying, excited…I never am sure, so it’s with some dread that I answer his calls.

I had reason to feel dread this week because Aaron has been in a state of some anger and belligerence for awhile now. We’re not totally sure of the why, but we are totally sure that his ups and downs are tiring to us and to his staff and friends at Paradigm.

This past Monday morning was rough at home. I always let Aaron decide if he’ll go or not, knowing that forcing the issue is a recipe for disaster. But Aaron also knows that if he does go to Paradigm then he gets extra treats and his meal of choice over the weekend. He nearly always decides to go, but my reward system can also come back to bite me because the reason he goes is sometimes just for the future reward, and this stresses him to the point of bad behaviors.

Sometimes it’s just a perfect storm for a stormy day from Aaron!

Monday was that day. Anger at home…then a calming…a fun ride to Paradigm because his music cheered him…and my last admonishment as he left the van.

“Aaron,” I said, “try to have a really good day.”

“I can’t make you any promise,” he seriously replied.

And I had to laugh at that as he walked away. He was borrowing my often-used phrase when he tries to pin me down to doing something at a certain time, and I tell him I can’t make a promise. How well he listens and mimics when it suits him!

And boy, it’s a good thing he didn’t make a promise to have a really good day because it was anything BUT a really good day!! I’m very thankful for the patient staff at Paradigm!

Tuesday saw more issues at home, though not as severe as the previous day. I was encouraged by his good day at Paradigm, but our evening at home hit bottom again. He was not happy that Gary and I talked to our daughter on the phone before supper, in our bedroom with the door locked so that Aaron couldn’t come in and interrupt. Aaron was very rude before supper and during supper. Tough love ensued, ending with Aaron’s Cheddar Pasta Salad being taken away by Dad before he was through…and all his snacks being bagged up by Mom and put inside the locked van.

Well!!

Aaron finally calmed down as the evening progressed. He turned a corner, looked at me as we watched a show, and surprisingly…and nicely…said, “Mom, I’m sorry.”

“Thank you, Aaron,” I replied. “I’m sorry, too.”

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

But the snacks stayed in the van, a test of his sincerity.

The next morning, yesterday, saw him irritable again and not wanting to hurry out of bed or hurry to get himself ready. I don’t tell him to hurry – I’ve learned better – but he knows the underlying theme.

“Don’t rush me!!” he stated. “I have no time to hurry!!”

Oh, Aaron! I want to both laugh and cry when he talks that way!

So, this morning, we were getting ready to go to his yearly support plan meeting. Again, he was sleepy and frustrated, and dreading this meeting. It helped that we meet at Carlos O’Kelly’s and get to eat out, but Aaron still does NOT like meetings. He wonders if he can stay at Paradigm, can he stay at home, and all sorts of other concerns. I felt bad that he was scared so I assured him that things are staying the same for now, but still he was on protective mode.

“Mom, I’m telling them that you and Dad are starving me!” he declared, threatening to tell them about the locked away snacks.

Again, I didn’t react and told him he had every right to do just that. But at the meeting, as he chomped down salad and chicken fingers and French fries, he was happy and loud and talked away at everything except his starvation.

We’ve been very weary lately, honestly. I don’t know if his mood swings are because of medicine side effects…because of strong low fronts moving through this week…because of seizures last week…because of who knows what??

As we signed papers today, I laughed at Aaron’s signature. This is his very favorite way to sign his name.

Aaron has such a very hard time playing by our rules…the societal rules that dictate how we talk to others and respect others and give and receive love. Try as we might, we cannot get him to tell us why he’s unhappy…at least not if his emotions are coming from someplace other than the fact that his snacks are locked away or he can’t stay home on his computer all day.

Aaron can convey plenty of facts. What he can’t convey easily are his emotions…his deep-seated reasons for his angry actions.

Gary and I know this about Aaron, but sometimes it’s hard to remember it in the heat of battle. That’s when we need to back away…take a deep breath…lean on each other and God…and remember one more thing.

Aaron Moore is cool.

He’s cool when he tries to sneak another notebook in to Paradigm to give away, knowing he’s not allowed to do that.

He’s cool when he leans against my legs after he’s been so angry.

He’s cool when he’s trying to feed an ant on the table at a restaurant.

He’s cool when he’s giving and sharing.

He’s cool when he’s “drying the bubbles off,” as he says.

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He’s cool when he’s playing a trick.

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He’s cool when he says, “MOM!!” at the grocery store and laughs and laughs at my reaction to him holding my LEAST favorite creature!!

And in so many other ways, our unique Aaron is very cool, even when he makes me lose mine.

Let me remember that, Lord, in the heat of the moment.

Let me remember that you crafted and created Aaron’s coolness.

Aaron Moore IS cool!

Of No Use?

Our neighbors across the street from us had a yard sale a couple weeks ago. Aaron loves yard sales! He REALLY loved the fact that there was a yard sale right across the street! He asked if we could go over and check it out to see if there was something he could buy. I agreed, knowing that he would end up over there anyway talking to Derek and Gina until I came to the rescue and escorted him home.

Before we left, I remembered that in my wallet was an envelope that held Aaron’s remaining Christmas gift money. I was always forgetting it was there! I looked inside and pulled out the cash. Aaron had $5.00 to spend, and he was happy.

It didn’t take Aaron long to spy exactly what he wanted. A lava lamp!! Aaron LOVES lava lamps and has been through several over the years. He has a glitter lava lamp in his room now, but this was a good old normal lava lamp. Aaron knew he had found his yard sale prize!

We looked at the sticker and guess what? It was priced at $5.00! Could it be any more perfect? We crossed the street with the “new to Aaron” lava lamp, carried it up to his room, placed it on his already crowded nightstand, plugged it in, and went about our day.

Aaron was waiting, though, for the level gunk in the lamp to begin bubbling. As he went about the remainder of the day and evening, he kept glancing at his lit lava lamp. There was no motion, however. The gunk was still.

“Mom!” Aaron finally said. “Do you think I bought something that is of no use?!”

I turned my head away so I could smile at his phrasing. He’s just so funny sometimes…so precise.

“No, not at all,” I responded. “The lamp just takes some time to heat up the goo inside.”

Gary got home and Aaron happily showed him his new lava lamp…his still not-moving lava lamp. Supper came and went, as did evening chores and Wheel of Fortune and watching our DVD show just before bed.

As Aaron got into his bed, he sighed with exasperation as he looked at his boring lit but not bubbling lava lamp.

“I think I bought something that is of no use!” he sadly repeated as he pulled his covers up. I was beginning to wonder myself if the lamp would work even as I told Aaron that it just needed more time.

No one was happier than me to walk in Aaron’s room the next morning, his coffee in hand, and see the lava lamp bubbling in all its globby glory!! YAY!!! Yay for Aaron…yay for me…and a special yay for Derek and Gina, whom I was afraid would have certainly heard all about the lava lamp that was of no use!!

Aaron was happy, happy! And every day since then, when he returns from his day group, he plugs in the lava lamp, totally enjoying the goopy bubbles in all their various shapes and sizes!

Last night, Aaron went to bed talking about how he was going out to eat lunch the next day with a group from Paradigm – his day group. There is nothing Aaron loves any more than eating out. So, this morning I wasn’t too surprised to hear him stirring early. How early? Aaron keeps a logbook like this:

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This morning’s time was:

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He had so much to look forward to today! He was ready to get this show on the road! He supervised me as I poured his coffee and carried it to his room, then told me he would shower and dress. I went back to my quiet time desk, but it wasn’t quiet for long.

Aaron was soon standing behind my chair, his shower completed and his impatience growing.

“Mom,” he ordered. “Take your shower and put your make-up on so it will become 9:00!”

I soon realized that Aaron’s hurried mood wasn’t going to improve until he saw me making some headway concerning my shower and make-up. But I also realized that Aaron’s eyes were very droopy, and his mood was changing even further from excitement to not feeling so well. He told me his head hurt, his stomach hurt, and that he felt like he was having a dream. We’ve learned that this often means a seizure is coming. Aaron was ready to go back to bed, and sure enough I soon heard on the baby monitor the unmistakable sound of a seizure.

I never like Aaron’s seizures, of course, but I especially detest them when they keep him from doing something that he’s looking forward to so much. No eating lunch out today for Aaron, I thought. Bless his heart!

And my heart? My mama heart takes a beating every time I watch Aaron going through this hard part of his life. He handles all this much better than I do, thankfully. But as I looked down at Aaron when I checked on him later, look what was in the background.

The lava lamp. Aaron’s lava lamp, that he worried was of no use, was performing perfectly there beside Aaron in his bed.

And it hit me. How easy it would be for me to wonder about all the why’s of Aaron’s seizures and autism…to even feel like it was all sadness and of no use. But never, never have I felt such hopeless thoughts. Even in the changed path of Aaron’s life…changed from what we thought our firstborn son’s life would be…there is the sure hope that only God can give.

You see, knowing and following Christ gives to me and to Gary and to Aaron the same hope that God gave to Jeremiah to share with the Jewish nation centuries ago.

“I know the plans I have for you,” declared the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.” (Jeremiah 29:11)

I can claim that promise for us and for Aaron today because we know that God! We know that He has told us in Romans 8:28 that “ALL things work together for good to those that love God, who are the called according to His purpose.”

God doesn’t plan to hurt us! He plans to work for our good in order to conform us to Christ! We have a hope in Him and a future beyond anything we can imagine!

So you see, all the tough times and the sadness and the unanswered questions we may have do NOT mean that this life is of no use. Absolutely not!! This life is working perfectly, just how God intended, and in that knowledge – in God Himself – I can trust, and I can rest.

I Did It My Way

In our Life Group the other night we were talking about the fourth chapter of James. There James tells us that we shouldn’t say we’re going to go here or do this without acknowledging God’s will for us in these things. James reminds his readers to say, “If the Lord wills, I will do this or do that.” We talked about the signature song of Frank Sinatra, I Did It My Way, as being the exact opposite of the attitude that James wants for us.

But my friends, laying aside any spiritual implications, I must say that I have found Aaron’s life song!! How many times in a day could Aaron, with his autistic way of living life, rub his hands together in glee and yell, “I DID IT MY WAY!!!”

Sometimes Aaron’s way is a funny way. Sometimes Aaron’s way is a frustrating way. Sometimes Aaron’s way is a very fascinating way. But it is nearly always HIS WAY!!

One recent evening, Aaron wanted to set the table for supper. I love having Aaron’s help. Aaron knows my first comment will be for him to wash his hands, so here’s how it always goes: “Mom, can I set the table? I already just washed my hands.”

And I’m thinking, “Yeah, like two days ago?” Aaron knows what Mom is thinking so he just turns and heads for the bathroom, returning with clean hands (I hope) and ready to set the table. On this particular evening, when he was all done and had left the kitchen, I stood staring down at his place setting.

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What a perfect picture of Aaron doing things his way! He must always have multiple forks and spoons, no matter what we are eating. I was proud of the precise way that he placed his utensils and napkin on the correct side of the plate and humored by this example of how Aaron thinks deep in that amazing brain of his. Gary and I each had been given one fork and one spoon, but Aaron set his place at the table HIS way.

Gary and I see Aaron doing life Aaron’s way every single day. Let me show you some examples of Aaron’s way.

Look at how Aaron wears his watch way up on his arm. He has always…and will always…wear his watch this way.

Aaron loves this sweater and he wears it every day, even in the summer and even outside in the summer. Plus, the slipper socks!

When I drop Aaron off at his day group, I would always tell him to quit picking up sticks to carry inside to Piper, the resident day group dog. One day I took my eyes off Aaron as he got out of our car to walk into the building. When I looked up, he was limping. I was alarmed, especially because we were getting ready to take a trip out of town. Weird things happen before every trip…things like stitches and staples and ER visits and dental procedures, all involving Aaron. So, I was very worried to see him limping. I texted Barb, and soon she sent me back this picture.

Aaron decided to be sneaky in how he carried sticks into Paradigm to give to Piper! Now, every day, he stops to take off his shoe and place a stick inside…in full view of me and everyone else. 😊

Aaron listens to music CDs as we drive. He loves music, but almost always only as we drive. And if there are multiple CDs, he will listen to them in order of the date they were produced. “Mom,” he said one day, “I listen to them as the years have gone by.”

He also watches the credits after every movie, as intent on the screen as if it was the most exciting part of the movie he just watched.

Watching him clip coupons is very interesting. He cuts as precisely on the dotted line as he can, and then cuts each of those little strips into very small pieces that fill his special trash can. The coupon papers are laid out neatly when he is done, with coupons stacked just right in the coupon box and restaurant coupons kept out separately. If there are good coupons and I buy an extra paper, I hide it from Aaron because he will NOT let me clip coupons. “You don’t do it right, MOM!!” he angrily says. One day he grabbed coupons out of my hand and wadded them up into a ball because he was so angry to think of me cutting them. This is how important it is to Aaron to do these things his way.

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Aaron loves to find items at his day group…even if he must open a drawer to do so…and bringing them home. How many times I’ve made him return many of those pilfered pens and sticky notes and clips and much more! One day he got in the van, reached into the bag he was carrying, and showed me the boy’s bathroom sign. “AARON!!” I exclaimed. “You took the boy’s bathroom sign?!!” But he assured me that Chris let him take it because they put up a new one, and Chris came to the car to confirm to me that this was true, and now Aaron’s bathroom at home has the prized sign on the door!

Aaron crunches mulch outside into a bucket. This is his special way of relaxing.

What’s funny is to watch him at a restaurant that serves peanuts. Here he is yesterday as we ate lunch after his doctor visit, crunching peanut shells just like he does the mulch.

I could go on and on with these examples. You see why I say that I Did It My Way is a very appropriate way to describe Aaron. But I like even better to say that Aaron is really doing his life God’s way. After all, God has fearfully and wonderfully made Aaron just the way he is.

So, yes, Aaron is doing things his way but it’s because God made Aaron HIS way!!

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Mom, Don’t Be Sad

Blah! Bleh! However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron. The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo. Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it. On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought. I guess it’s another home day for Aaron. I had a must-do trip down to the air base scheduled, so off I went, minus Aaron. But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm. I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties. I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing. It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world. Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm. He was still happy when he called me later to give me a report on his day. And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it. He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always. I reminded him that an Xbox is too expensive to buy for a weekend treat. Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions. Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate. “Do you sell any CHEAP Xboxes?!” 😊 😊

Once home, Aaron helped me carry bags in the house. He helped me make spaghetti for supper. Never mind the broken noodles all over the stove-top. He was trying his best. He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday. And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer: “Happy Birthday to you! Happy Birthday to you! You look like a monkey. You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park. We saw beautiful Kansas prairie grasses.

We saw lots of very old, dramatic trees.

Aaron even happily posed for a picture.

But best of all, we got up close and personal with this gorgeous deer.

What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road. But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading. And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair. That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed. Like he went from being manic to being angry again, for whatever reason. He was just upset for no reason that I could see.

He said he was not taking his pills, but he did. He said he was not taking his CBD oil, but he did. He said he wasn’t going to bed, but he did. He said he wasn’t going to brush his teeth, and he didn’t do that. Of course. 😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness. He noticed my change every bit as much as I noticed his. He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said. “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly. No talking allowed. But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor. “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment. And so did I. But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them. Tears of frustration and sadness. Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am. I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean. The ups and downs of life take a toll. The good news and the bad news. The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well. Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God. He reminded me as I laid awake for a long time of His love for me and of His unending grace. Grace upon grace. Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness. He never lets me down or leaves me to my own resources. He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise. For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

What Number?

Aaron loves storms.

LOVES storms!

And we got a doozy of a storm Wednesday evening. We followed it on radar as it approached. We saw the clouds swirling and thickening from my favorite upstairs vantage point.

Aaron was happy.

Happy until our power went out. What’s strange is that our power vanished before the storm really hit our area. We were surprised.

Aaron was puzzled.

He was also a little irritated that he could no longer be on his computer. A loss of electricity is not his favorite part of a storm.

We were outside looking at the clouds when Aaron spied our neighbors outside on their driveway, and despite my admonishments he was over there in a flash.

“Hey, Colby!” Aaron yelled. “Is your power out?”

And off Aaron tromped through our yards, his ever-present sweater flapping in the wind, to stand on Colby’s driveway…eventually joined by me and Gary, and Colby and Amanda, and Derek and Gina, and all their children…and Aaron.

Our neighborhood storm gathering didn’t last long, but Aaron took full advantage of the short time to become even more excited, more animated, and definitely louder.

Sorry about the sweater on your head, Gina.

It was probably best that rain started falling so we could all escape inside to our own homes, where for us…and for Aaron…the reality of no electricity began to settle in. No lights…no television…no computer.

Aaron was unsettled.

He was full of questions and wandered around the family room and kitchen, asking said questions and wondering what to do with himself.

His main question?

“When will the power come back on?!”

We had no answer, until finally Gary got an email from our power company with the answer.

The APPROXIMATE answer of 9:15 for restored power.

Too bad Gary told us the time, out loud for all to hear.

Aaron doesn’t do approximate.

Times for Aaron are pretty much precise or nothing.

I should just say precise. Pretty much precise does not go together in Aaron’s world.

Aaron and I have been watching the TV series, Bones, at night. We watch one show every night. Aaron, now busy playing his Nintendo DS in the family room that was lit with lanterns, latched on to 9:15 as being the firm time that our power would be restored.

“So Mom, can we watch Bones at 9:15?” he asked. I explained that we weren’t totally sure that the power would be on at 9:15.

A short pause ensued.

“Mom, do you think we can watch Bones at 9:15?” he ventured again.

That’s when I started praying that the Lord in His mercy would allow our electricity to be on by…if not by some miracle BEFORE…9:15.

At 8:58, Aaron announced that he was going to bed at 9:00. He loves watching lightning out of his upstairs bedroom windows, leaving his blinds up so he can enjoy his perfect view of the western sky. Aaron sat in his family room chair until it was 9:00, on the dot, and just as he promised he got himself ready for bed by the light of our lanterns. I was thankful for the storm’s distraction from his certainty that the lights would be on at 9:15.

At 9:11, just as I walked back into the family room after saying goodnight to Aaron, the lights came back on! Aaron jumped out of bed, of course! And at, or very close to 9:15, Aaron and I were settling in to watch Bones. Thank you, Lord!

The next night we had a chance of storms, but none were on the radar when Aaron went to bed. Just as I told him goodnight and was closing his bedroom door, he asked…as he always asks…if it was going to rain. I told him it might rain but that we’re never sure.

The words “might” and “never sure” are never satisfactory to Aaron.

“Mom??” he asked through the baby monitor on my nightstand as soon as I was in our bedroom.

I pressed the Talk button.

“What, Aaron?”

“So it might rain?”

“Yes, it might rain.”

“Might?” he repeated.

Sigh. That was me.

“Yes, Aaron, might.”

“So what number?” he asked.

I quit pressing on the talk button so I could laugh.

“40%,” I responded.

“What does that mean?” he asked.

“It means there’s a 4 in 10 chance it might rain,” I answered.

I knew he wouldn’t get that, but I did it anyway.

“So they’re not sure,” he said.

“Right, they’re not sure.”

“They don’t know,” he continued.

“Aaron, it MIGHT rain. They’re not SURE it’s going to rain. No one KNOWS if it’s going to rain. But MAYBE it will rain. Good night. I love you.”

Talk button off.

But Aaron’s talk button wasn’t off as I heard him muttering about the chance of rain as I escaped to the bathroom.

The next night, last night, saw us with that chance of rain once again. Aaron had already queried us over and over during the evening about the possibility of rain. As soon as our Bones episode was over, he looked over at me.

“Is the rain 4 to 10 tonight?”

I just didn’t even care at that point about precision and accuracy, about percentages and correct explanations.

“Aaron, I think it’s 5 to 10 tonight.”

“What does that mean?”

AHHHHHHHH!!!!!

That was me…internally.

“It means there’s a half-and-half chance it could rain.”

“So there’s half a chance it could rain,” he repeated.

He was satisfied with that, repeating it several times as we got his bed all ready and made sure his blinds were open in case that 5 to 10 worked out the way he hoped.

But I can tell you one thing. There is absolutely a 100% chance that we will again be discussing our rain chances all weekend long…over and over and over and over and over.

There is also a 100% chance that we will have our typical highs and lows…and I’m not talking about the weather now.

Oh, and a 100% chance that we’ll see this image of Aaron walking through our yard at some point with his favorite sweater blowing in the wind…slipper socks on…oblivious to the image he leaves for all to see.

Free as a bird…outside…where it might rain.

3 to 10 today.

8 to 10 tonight.

I’m ready with answers today!!

A Normal Thing

One evening we were eating supper and Aaron was talking.

That sentence makes me laugh because I could just leave the first part blank – to be filled in, you know – because any place and any time and any meal and absolutely ANY scenario could easily end with: “…and Aaron was talking.”

After all, the name of this blog IS, “He Said WHAT?!” I write about lots of other things, too, but I started out wanting to convey the amazing way that Aaron expresses himself. Sometimes he is not only amazing. He is also funny, maddening, complex, insulting, and so many other adjectives.

Anyway, we were eating supper and Aaron was trying very hard…and largely succeeding…in monopolizing the conversation. I don’t remember Aaron’s question to Gary, but Gary decided to answer in a joking way. Gary must have had a momentary loss of focus or memory. Aaron rarely appreciates joking, at least not joking in the way that we…and all of you, no doubt…would understand. Most joking does not compute in Aaron’s autistic brain. Instead, he is most often angered by the give and take that the rest of our family enjoys.

So, when Gary offered a little joking response, Aaron’s response was not at all light and funny.

“Dad!!!” Aaron responded. “I’m trying to talk a NORMAL thing!!!”

Oh, how I wanted to look at Aaron and ask, “Aaron, please define normal!”

Aaron’s definition of normal would most assuredly not be our definition of normal. And that’s OK, really. It’s just that sometimes we have a hard time not bending over in a belly laugh when Aaron responds to one of us as he did. Instead, Gary and I share a fleeting look of understanding with each other…a slight and very quick smile so that Aaron won’t notice…and wait until later to laugh at the whole situation. Or sigh, very deeply.

But we can’t sigh when Aaron is around.

“Mom!!” he said once after I sighed. “Don’t breathe madly!”

You would think that if Aaron notices my sighing then he would also notice and then copy how to engage in conversation, joking, excitement, and all sorts of other regular communication. Yet that element is often missing from Aaron’s abilities. It’s one of the mysteries of the autistic brain, that lack of being able to connect the social dots like you and I do.

As I mentioned earlier, our joking often sets Aaron on edge. But what Aaron thinks is funny is usually not at all funny. Aaron thinks it’s funny to whack a person on their bottom, for instance. I’ll never forget the day he hauled off and whacked a resident doctor in the hospital. That was an interesting moment, and so embarrassing for me.

And Aaron’s response when corrected was, and always is, this: “But I was just trying to be funny!”

We had this recurring scenario one day, with Aaron telling me he was just trying to be funny, when I repeated what I often say: “Aaron, what’s funny to you usually isn’t funny…at all!”

He looked at me for a few seconds and then answered: “Mom, I don’t know what I could use as funny.”

And THAT is a very true statement! It’s also a very insightful look into what makes Aaron tick.

Yet Aaron truly is very funny sometimes, although he doesn’t know that he is. He says things in such unusual and comical ways, but we often can’t laugh because we don’t want him to be self-conscious or to get angry.

A couple examples from this past week:

“Dogs are more trainful than cats.”

After dumping Parmesan cheese on his pizza: “Mom, you’ll need to buy some more of that spaghetti powder!”

And a favorite from the past, after I once again reminded him not to ever ask a girl how much she weighs: “Mom, I didn’t ask Tiffany how much she weighs. I asked her how much she eats!”

🙂 🙂 🙂

Aaron’s talking can also be very draining to Gary and me. Sometimes we try to slip out of the house without Aaron hearing us. We sneak out the garage door, closing the door to the house as softly as possible, and then we sit on our front porch for a few minutes to ourselves. We feel like two teenagers who are trying to sneak out without permission, and it makes us laugh.

But usually it isn’t long before we hear the unmistakable sound of Aaron in the house, clomping down the stairs and most certainly looking for us. He has something he must say and so he searches until he finds us.

Here he was one evening, standing on the sidewalk talking to us as if he was on a stage and we were his audience.

His subject was no doubt something like Star Wars and the Jedi Knights…or Transformers…or whatever else he was playing on his computer. Talk of androids and Anakin and Padme’ and Darth Maul…of Sith Lords and Jedi knights and clones and Queen Amidala…of light sabers and droids and the force and motherships.

His excitement builds as Gary and I slip further into a stupor.

Aaron doesn’t notice our glazed eyes or fixed looks. He’s having his version of fun! But then the dreaded happens! He asks us a question. And we just look at him blankly while he, at last, is quiet as he awaits our answer.

Our brains scramble to link up to the last thing or person or alien or whatever that he was talking about. If it’s a person, my usual answer is actually a question: “Ummmm…is he a good guy or a bad guy?”

Aaron happily answers me, and once again he is off and running – thankful for any engagement from me or from Gary.

Ah, yes, we’re having Aaron’s version of talking a normal thing.

But sometimes…sometimes…Aaron is quiet, like he was on the porch during this rainy moment. It was such a sweet moment, too.

And I am reminded that Aaron needs me and Gary to understand his normal and to, when possible, allow his normal to be our normal, as well.

WHACK!!

Except for that.

Sigh.

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