Our Man Kid

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

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

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

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

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

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

“Are you a man kid?” he asked Aaron.

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

But it stopped me in my tracks. 

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

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

A man kid. 

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

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

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

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

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

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

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

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

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

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

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

Happy Birthday, Aaron!! 

We love you, man kid!!

Aaron’s Talking Points #11

Here are more of Aaron’s sayings, collected over the years. Have fun reading!

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Aaron and I finished our Skip-Bo game. I reached out to get some cards that he was handing me.

Aaron: Your hands are skinny……

And all I heard was the word “skinny.” Something on me was identified as skinny??!!

Aaron (continuing): …..like an alien.

Hmmmmm.

I’ll take it!

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While talking about his group this morning, Aaron said, “Mom, a girl there likes me. I would put it as she doesn’t love me but she likes me.”

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Aaron drinks water or other beverages like he’s in a contest to see who can down his drink the fastest. He turns it up, chug-a-lugs, and down it goes. He even drinks his coffee that way, once it cools, which is a total travesty. We’re always telling him to slow down…savor each sip…taste each swallow.

Today I fixed him some hot tea that he wanted. He came downstairs later, cup empty, and gave me this report:

“Mom! I was not drinking all of it. I was just drinking PARTS of it!”

In other words, he SIPPED his tea! But as usual, his description is far more interesting than ours. 😁🥃☕🥛

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Oh, silly people who call this little round thing a coaster. Aaron told me the correct name last night.

This is a drink plate.

Got it?

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Aaron was telling me all about the chicken in the deli at Dillon’s.

“They have fried chicken. They have that chicken with no bones. And they have pop-tart chicken!”

Um, that would be popcorn chicken, Aaron. But with pop-tart chicken you could have breakfast and lunch in one!

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Aaron and I were talking about how some people do bad things, and that the color of a person’s skin doesn’t make them bad or not bad. He thought a minute and then said, “So not a person’s skin or their species makes them bad?”

Species? Let’s start over.

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Yesterday Aaron and I were listening to Zac Brown.

Zac Brown: …and if you say that I’m too late, I’ll curl up and die in misery.

Aaron laughed and laughed.

Me: Why are you laughing at that?

Aaron: He said he would curl up by Miss Ugly!!

I’m afraid I let this life lesson pass right by as we both dissolved in laughter. 🤪😂😂

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Aaron had a seizure last night. Just one, but is he ever wired this morning! He was out of bed very early and has talked pretty well nonstop. He considered playing a game on his computer, but I reminded him that this is not a good idea after having a seizure.

Me: Aaron, you know that playing a game might get your brain too riled up.

Aaron: So a game might make me wild up?

I didn’t tell Aaron, but I actually think it’s too late to stop that! 🤪♥️♥️

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In Wal-Mart today, Aaron’s eyes latched on to a display of colorful, adorable, stuffed pigs. He instantly latched on to the brightest one there. He had me when he said, “Can I own him?” 😃

Aaron may be our adult son, but sometimes he’s just still so cute and dear. ❤️

And he now owns a very bright pig!

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I was frustrated with Aaron today when I picked him up from his day group because he told me he had given some of his money away to a friend. We work and work to make him stop giving away his money, but still he sometimes does this.

So, I gave him the lecture.

Then I gave a big sigh.

Aaron: Mom, don’t fight and don’t breathe!

Well, I guess if I quit breathing then I would also quit fighting. 😜🤔

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Since Gary and I got home from Houston, and after all of Aaron’s weekend seizures, he’s been telling us that his legs are weak. Finally, yesterday, he got it figured out.

“Mom, I think those six seizures stiffed my legs!!”

I want to show I’m sorry about his legs, but it sure is hard not to laugh at his wonderful way with words.

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Aaron and I got home from eating lunch out (at last!!), and then running several errands. He was very compliant with staying near me while we were out, using hand sanitizer at the air base before we could enter, and only walking one way up and down the store aisles. 🙄

Soon after we were home, he wanted a piece of cake that we made the other day, so I told him to wash his hands. He finally showed his frustration.

“Is that a government law??” he asked with disdain.

I assured him it was Mom’s law and he REALLY better obey that one!! 😂😂

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Andrea got me some beautiful roses and there are some ferns mixed in. Aaron saw pieces of the ferns that had fallen on the table and asked what they were. “Mom, I thought your hair was shredding on the table.” I hope not. I have enough hair problems without adding shredded hair to the list!

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Aaron: “So are you getting something special since it’s your Mother’s Day?”

I walked over to him, put my arm around him and said, “Well, a hug is special.”

Aaron: “I was talking about food!!”

Ah, if Mom gets special food then Aaron might get special food. Smart boy!

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Gary took Aaron out today, and when they came home, in walked Aaron with his arms full of candy and cookies and a really fun card for me.

Aaron: Here, Mom! These are for you.

Me: Wow, Aaron! Thank you so much!!

Then I decided to tease him a little.

Me: So, do I have to share these with you?

Aaron: No. I don’t like any of them.

And off he walked.

Never underestimate Aaron’s honesty and clarity. 😀😀

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‘Til next time! And trust me, there WILL be a next time! 🙂

Aaron’s Talking Points #10

More of Aaron’s funny comments collected over the years. Enjoy!

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First initial report from Aaron about the circus: There were not a lot of clowns so that was boring. The elephants pooped in a bucket and that was NOT boring.

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Aaron, walking through the family room: “I’m going to use the bathroom. Do you think that’s a good idea?”

Why does it even matter what I think on that subject?

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Aaron has a hard time getting family relationships correct. Brother and sister, mom and dad – he’s usually good with those, although not always 100%. Aunts and uncles – I think he just calls them by those titles but he doesn’t really fathom their connection to mom and dad. And just forget cousins.

Now that Andrea and Kyle are getting married, Aaron has really struggled – in more ways than one – with this new relationship and how it will impact him. He feels like he’ll lose Andrea – that she won’t be his sister anymore. We’ve told him over and over that Kyle will be his new brother (brother-in-law, to be exact, though that confuses Aaron). And that Andrea will still be his sister.

So today he was telling our friend, Casady, that he does NOT want Kyle to marry Andrea. His reason, in his words:

“I don’t want to be a Grandbrother!!

That’s a new one! The family tree just got even more interesting. 🤣🤔

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Aaron’s been asking a million questions this morning. I’m a little phased out at this point, so I’m giving the standard answer of, “Hmmmm.” This doesn’t sit well with Aaron, so he challenged me about not answering him well.

Aaron: What do you keep saying?

Me: When?

Aaron: Every time I talk to you.

Me: Hmmmm.

Aaron just gave a big sigh and walked away. Maybe I’m on to something. 😁

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Aaron told us that he thought one of his staff was pregnant with her second child. This fascinates him. Today when I dropped him off for his group, this staff was driving. Aaron asked her if it’s true that she’s pregnant and she said yes. So he excitedly replied, “So you’re going to do another baby?!” He does have a way with words!

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Aaron was watching the news last night when on came a story of the Pope at an Easter gathering. Aaron leaned forward on the floor where he sat, taking in all the scenes of the Pope. Finally Aaron was done and as he gathered up his things off the floor, he said, “That pastor dresses funny. I’ve never seen a pastor dress THAT way!!” Can you tell we’re not Catholic?

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Another topic that Aaron talked about yesterday: clowns. He wonders if a clown wears that same kind of make-up that I do. O.K., now he’s gone too far!

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Aaron has talked and talked and talked and talked and talked…..you get the idea……about an alien picture that he saw. Earlier, he said that the alien was pink. But knowing that he is color blind, and that to him pink is sometimes really blue, I foolishly told him that maybe the alien is really blue. This statement that I made without thinking resulted in me having to stand in his room at his computer, observing the mutant alien on a very small picture. Was he pink? Well, sort of. But I could also see a tinge of blue. Hmmmmm……

Me: Aaron, I think he’s a pinkish blue.

Aaron: Pinkish blue?

Me: Yes. A little pink and a little blue.

Silly me. This pinkish blue business is just a bit much to comprehend in Aaron’s black and white…..it’s either all pink or all blue…..world.

So a few minutes ago, Aaron stood behind me at my computer, trying to figure out once and for all what color the alien really is.

Aaron: Mom, pinkish blue.

Me: Mmmmmm. (Not really paying much attention…..brain is numbing).

Aaron: Pinkish blue. That’s like pink and blue are connected.

A good laugh woke my brain right up! I think Aaron gets pinkish blue now!

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Our sweet caregivers, brother and sister long-time friends of ours, came over Sunday to go over some things before we leave for Houston. So this morning I had this conversation with observant Aaron:

Aaron: Mom, H. looks weird.

Me: She most certainly does NOT look weird!

Aaron: I think she looks weird.

Me: Why on earth do you think she looks weird?

Aaron: Well…..she’s skinny.

Obviously, Aaron is very unaccustomed to skinny here at our house. And trust me, this is his version of a compliment. I’ve already warned H. about her upcoming compliment, too, because I strongly suspect that he will share it with her as soon as she walks in the door tomorrow.

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Same song, second verse.

Aaron: “The movie 2012 is 159 minutes long.”

Me: “So it’s about 2 1/2 hours long.”

Aaron: “No. It’s 2 hours and 39 minutes long!”

 Silly me!! We must be precise!

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A few weeks ago, when Aaron had a respiratory virus and sore throat, he had some observations, as always.

“Mom, every time I blow my nose it comes BACK to my nose!!” 😝🤢

Then he started running a slight fever, complete with some chills.

“Mom, why do I feel cold? Is it because my body isn’t at its warming temperature?” 😃

So today during Wheel of Fortune, he took a chill and then laughed and laughed at the goose bumps on his legs.

“MOM!! LOOK!! Those are bumps to being cold!!” 😅😅

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Aaron: So are we going to watch an NCIS?

Me: Sure!

Aaron: Will it be 9:00, or 8:55?

Let me think about that, Aaron. 🤔🕘🙃

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Aaron held up a Snickers bar at Wal-Mart: “Mom, this is the kind of candy bar my friend likes! But what’s that stretchy stuff in the middle?” Uh, I’m hoping you’re talking about the caramel, Aaron.

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Aaron’s had a very hard time waking up in the mornings. When I have to keep talking to him or shaking his leg to get him awake, then he becomes angry. It’s not a good start to our day, so today I decided to improve the situation by offering him a stop at McDonald’s for a sausage biscuit. It worked!

After our biscuits, as we drove to Paradigm, Aaron’s eyes were still heavy and he was unusually quiet. We were listening to The Beach Boys.

“…I wish they all could be California girrrrls…”

Suddenly Aaron started chuckling and then outright laughing.

“What’s so funny?” I asked him.

“They’re singing about BIG California girls!!” 😂😂

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Aaron, talking about all the places he went today with Amy:

“Mom! We went to that store that has all that stuff that smells! We got Barb some of that smelly good smell stuff!”

I want some!!

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One of many observations that Aaron is making as he works his way through the movie, Titanic:

“The accent of those people on that ship. They sound like Europe!” 😁😁

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Aaron wasn’t out of bed for 60 seconds before he was standing beside me, talking about barnacles.

Yes. Barnacles.

His current focus is The Titanic, and the barnacles covering the wreckage have totally captured his attention…and therefore, ours.

I just googled Barnacles. I have learned more than ever about barnacles. Go ahead. Ask me a question about barnacles. And if I cannot answer your question, I’ll have Aaron call you. So leave me your number when asking questions. You and Aaron can talk for hours about barnacles. Trust me. HOURS!!

Doing so will provide me with very beneficial mental health assistance, too. Think of how happy that will make you feel, my dear friends and family!

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Well, that’s enough of Aaron this time.  Thanks for reading.  You may leave your phone numbers in the comments for that call from Aaron. 

Just kidding!!  😊  😊

Have a great weekend!

In the Eye of the Storm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Mom!!  This bed isn’t like my bed!!”

“Mom!!  I like my lamp better!!”

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

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

“Mom!!  I want to keep my carpet!!”

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

Shall I continue?

No.  But Aaron will, trust me.

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

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

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

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

And God’s forgiveness when we blow it. 

I’m so thankful that He understands.

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

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

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

Aaron’s Talking Points #9

Here are more of Aaron’s comments that I have collected over the years.  Enjoy!

 

Aaron and I were driving home from Paradigm, passing downtown Wichita on Kellogg.

Aaron: MOM!! LOOK!!

Me: What??!

Aaron: Wait!! It’s coming!

Waiting.

Aaron: There it is!! LOOK!! A chicken on a building!!

And there it was. A chicken statue perched on top of a building…….except I think it was a rooster. Anyway…..

Aaron: It’s a CHICKEN restaurant!!!! It hasssss……

Thinking.

Aaron: It hassss……CHICKEN FOOD!!!!

Soundsssss…….YUMMY!!!

 

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We’ve been praising Aaron’s good attitude and his kind sharing. Today he said, “Mom, I gave Sandra a piece of my Big Red gum. I told her that she doesn’t need her breath to smell.”

Well, I think we need to work on refining the presentation.

 

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Aaron and I are watching Little House on the Prairie. He remembered how Charles told Laura that the way to a man’s heart is through his stomach. But of course, Aaron has his own version which he told me yesterday.

“Mom, to get the love of a man is through his stomach!!” 😍😍

 

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Aaron is not a fan of leftovers. The other night he somehow guessed that what I told him for supper was, indeed, leftovers. He looked at me suspiciously and then asked, “So did you cook it once?” Busted!

 

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Aaron was once again talking about how I looked in pictures from years ago. “You used to have long hair, Mom. Did you like it long? Do you want it long again?” As usual I replied, “Yes, I liked it long but no, I don’t want it long now.” He stood there looking at me & said, “So you’re staying with that?” I tell you, he can slap me down to earth like no one else!

 

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Gary’s plowing the garden, so Aaron just walked in the kitchen and asked if we’re getting ready to “open the garden.” Yes, we are. I’ll post the hours the garden will be open and the admission prices soon.

 

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Gary and I got some of our garden planted. Aaron is wondering if the rabbits will try to eat any of the vegetables this year. “But Mom, the rabbits won’t eat the onions.” And why is that? “Well, because then they would have spicy breath!” And we all know that there’s nothing worse than a rabbit with spicy breath! I personally hope I never run into one!

 

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Aaron, watching the game: “Is this football almost over? It says final four!” HaHaHa!!!

 

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Aaron was asking me if the ice cream that dropped all over his shirt yesterday would wash out. We asked him how he got it on there anyway and he said, “Well, it was melting fast. You know, it was not the non-melting kind of ice cream!” I tell you, it’s really hard anymore to find that non-melting ice cream!

 

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I bought some packets of mixed nuts at Sam’s, which Aaron tried to hide under his bed so he could have them all to himself. Anyway, he was telling me why he hid them. “Mom, I like them – especially those wrinkled nuts!” Can you guess which ones are the wrinkled nuts? Yep – pecans! Or as Aaron calls them – Pee-Cons. Look at them – they ARE wrinkled!

 

IMG_2649

 

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Aaron, talking about his day group: Brandi was taking a vacation to a cemetery!!

Remind me not to call her travel agent. 😲 🤣

 

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You know by now that Aaron will sing a main phrase of the last song that he has heard…..over and over and over again. Yesterday he got a new CD – the Essential Elvis Presley. I’m questioning that essential part right now. Why oh why was the last song he heard just before his therapist appointment today “You Ain’t Nothin’ But a Hound Dog?”

To the woman who held the door open for us as we entered the building: Really, it was nothing personal.

To the receptionist: It’s not about you.

To his therapist: Just let it go.

To our waitress at Carlos O’Kelly’s: Not you! Honest!

We need to start listening to my hymn CDs.

 

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Elvis, Take 3:

Aaron: MOM!! Look up Elvis Presley Hound Dog 1956!!!

So I did, because if I don’t then my entire evening will consist of Aaron hovering, saying: MOM!! Look up Elvis Presley Hound Dog 1956!!

I was sure that Aaron’s head would pop off from laughing so hard as he watched Elvis dance.

Oh yes, Aaron has now discovered Elvis dancing.

Aaron: MOM!! Let’s show DAD!!!!

Me (MOM): Yes, let’s show DAD!! Hehehe!

Aaron: DAD!! Look at Elvis Presley Hound Dog 1956!

Much laughter ensued, from both Gary and Aaron. And finally, Aaron’s critique.

Aaron: Elvis was ROWDY in 1956!!

Stay tuned.

 

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More about Elvis on our drive home from Paradigm today.

Aaron: Mom, I’ve noticed something about Elvis. He doesn’t sing normal.

Me: He doesn’t sing normal?

Aaron: No, he doesn’t sing normal. How would you say he sings?

Me: You’re the one who said he doesn’t sing normal. You tell me how he sings.

Aaron: Well, he sings……I don’t know…..he just…..he doesn’t sing…..you know what I mean…..he doesn’t sing NORMAL!! How would you describe it?

Me: I didn’t say he doesn’t sing normal. You tell me how he sings.

Aaron: His voice is…..it’s……JIGGLY!!!!

Me (laughing): I knew you would come up with the right word, Aaron!

Aaron: Yeah. He’s just not NORMAL!!

I’m sure that Aaron and I have just begun to discover the truth about Elvis.

 

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We just got back from eating at Chili’s, where we celebrated the birthday of Aaron’s friend, Rosa. Aaron – despite his sore tooth and despite grabbing his face in pain several times – downed a salad, a plate of chicken bacon quesadillas, and an order of French fries (each one dipped meticulously in honey mustard sauce).

He ran upstairs to put on his pajamas, then thumped down the stairs and stood by me, staring.

“Mom!!” he finally said. “I don’t want any supper!”

Me (incredulously): WHAT DO YOU THINK YOU JUST ATE??!!

Aaron: Lunch?

This, my friends, is what happens when you meet at Chili’s for supper with Aaron BEFORE 5:00!!!! 🤣😋😜

 

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Aaron and I loved the new Jungle Book movie. The only thing he made a comment on was when Mowgli howled with the wolves. He thought a howling boy was pretty dumb. Haha! On the way into the theater, Aaron was reading the names of the movies on the marquee.

Aaron: Look, Mom! My Big Fat Green Wedding?

So I corrected him, changing Green to Greek, and told him about the old movie.

We went to the vet to get dog food on our way home. Aaron loves talking to Misha, who works there, about movies. They talked about Jungle Book, Independence Day, Captain America, and on and on. Finally Aaron remembered another movie he needed to tell her about.

Aaron: Oh! Guess what else is coming out? It’s The Married Greek Woman!!

It’s a good thing Misha knows her movies and didn’t even bat an eye!

 

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I asked Aaron if his glasses were dirty and needed to be cleaned, so he handed them to me and said, “Check it out, sweetie!” Sometimes I just throw parenting out the window and laugh.

 

‘Til next time!  😊  😊

 

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When is the Time to Trust?

A couple mornings ago I felt compelled to open my very old copy of the classic devotional book, Streams in the Desert.  This book was a gift from my home church when I graduated from high school way back in 1973.  But even though my graduation date makes the book old…of which I am all too aware more and more each day…the actual writings of Mrs. Charles Cowman were first published in 1925.  Her writing style may be old school, but the deep truths contained therein are timeless.

I was touched deeply by what I read that morning about faith and trust.  I jotted a few notes, tucked the truths away in my mind, and was soon about my busy day.  Aaron was staying home that day and we had fun plans!

Our plans were to meet some friends at All Star Sports for a morning of games.  My friend Joyce and I had decided to get our two sons together.  It would be the first time that Johannes and Aaron would be with each other for an outing, and we both wondered how it would go.

How it went was great!  I mean, there wasn’t tons of interaction between them, but the ice was broken, and plans were made for more time together.  Sweet Johannes held his hand out and with a prompt from me, Aaron shook his hand without squeezing it too hard, and Joyce and I laughed and were happy.  The boys had a good time and that’s what mattered!

 

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Aaron and I then went to eat some lunch and to drop off donations at Goodwill before heading home.  Soon after we got home, Aaron took a nap.  I had the monitor nearby, listening as I always do when he sleeps.  I really didn’t expect to hear a seizure, so I was surprised when I suddenly heard that unmistakable sound coming across the table where I sat.

It was a hard seizure, lasting close to 3 minutes.  And exactly one hour later, to the minute, he had another one.  It wasn’t as long as the first one but was still 2 minutes long.  Thankfully, he was done then and had no more the rest of the day.

It’s so surprising, even now after all these years, how quickly Aaron can go from being out and about, happy and fine, to having a seizure.  I don’t try to figure them out like I used to do, but I still find myself wondering why.

Even the next day on the way home from his day group, his speech was somewhat slurred, and he was very tired.  He fell asleep on the way home instead of his usual non-stop talking.  Was it the residual effects of yesterday’s seizure, I wondered?  Is his sodium low again?  Will he have another seizure when he gets home and takes a nap?

 

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So, even though this is Aaron’s life and our life, it’s still disconcerting.  Worrying.  Unsettling.

My mind was drawn back to the devotional I read earlier that morning.  I went back to it and was, as I always am, so amazed at how God has for me just what I need when I most need it.

Mrs. Cowman’s words were based on the story of Paul’s shipwreck in Acts 27.  The south wind blew gently as the sailor’s pulled anchor.  Paul had warned them not to take this trip, but they didn’t listen.  And that south wind was such a hopeful sign to them that they were right, and Paul was wrong.

But soon a terrible storm hit.  For days the ship was violently tossed on the waves.  During that horrible storm, with no sun or stars for days…with everything thrown off the ship that could possibly be tossed overboard…verse 20 says that all hope of being saved was abandoned.

But an angel of God stood before Paul to assure him there would be no loss of life.  Paul stood bravely before those battered and terrified seasoned sailors, and confidently said, “So take heart, men, FOR I HAVE FAITH IN GOD!!”

I thought about our life with Aaron…the ups and downs in so many areas…and the fear concerning his seizures.  How that day had been so much fun and so without fear, and then out of the blue came two hard seizures.  It was easy for fear to replace our fun.

My need to trust God is always there, right at the surface, even underneath all the normal and the fun and the hopeful.

But ACTUALLY trusting God is a must when suddenly the normal and the fun and the hopeful is yanked away.

That level of trust is a conscious decision that I must make.

That level of trust isn’t based on circumstances or on feelings but is rooted in God Himself…in Who I know Him to be.

This year for all of us has seen the rug pulled out in so many areas of our lives.  Things were going along pretty well for most of us.  Then…BAM!!

COVID…jobs…riots…anger…fear…disagreement.

I want to leave you with the hope that God is not taken aback or surprised by any of this.  He has a purpose and a plan.

Can you say, with Paul, that you have faith in God?

I want to leave you with a wonderful poem shared by Mrs. Cowman that I read that morning.  I hope it will mean as much to you as it did…and does…to me.

 

When is the time to trust?

                        Is it when all is calm,

                        When waves the victor’s palm,

                        And life is one glad Psalm

                        Of joy and praise?

            Nay!  But the time to trust

                        Is when the waves beat high,

                        When storm clouds fill the sky,

                        And prayer is one long cry,

                                    O help and save!

 

            When is the time to trust?

                        Is it when friends are true?

                        Is it when comforts woo,

                        And in all we say and do

                        We meet but praise?

            Nay!  But the time to trust

                        Is when we stand alone,

                        And summer birds have flown,

                        And every prop is gone,

                                    All else but God.

 

            What is the time to trust?

                        Is it some future day,

                        When you have tried your way,

                        And learned to trust and pray

                                    By bitter woe?

            Nay!  But the time to trust

                        Is in this moment’s need,

                        Poor, broken, bruised reed!

                        Poor, troubled soul, make speed

                                    To trust thy God.

 

            What is the time to trust?

                        Is it when hopes beat high,

                        When sunshine gilds the sky,

                        And joy and ecstasy

                                    Fill all the heart?

            Nay!  But the time to trust

                        Is when our joy is fled,

                        When sorrow bows the head,

                        And all is cold and dead,

                                    All else but God.

 

 

Setting the Mask Example

You know how you feel if you see a sign while you’re driving that says, “DANGER AHEAD!!”   Well, it’s not like we see those signs often, if ever, but in my life with our autistic Aaron there are most definitely sure pointers to a certain danger lying ahead of us.

Take, for instance…masks.

I knew when this COVID issue was ramping up and masks were becoming suggested…strongly suggested…then required…

Well, I knew we were probably in for a rough road ahead with Aaron.

Aaron…who would come home from school at a very young age with holes torn in his shirt because he had angrily ripped the tag out.  The tag irritated him and so I learned to cut tags out of each of his shirts.

Aaron…who furiously rebelled at wearing jeans when he was young because he only wanted “soft pants.”

I could go on, but you understand.  And so do many of my special-needs friends and other parents I don’t even know who are facing this mask dilemma with their tactically sensitive children…young or adult.

Aaron and I pulled into our Aldi parking lot when I decided to have him wear a mask for the first time.  Actually, I had been plotting this day for awhile.  I took Aaron for a nice walk nearby at Nellie’s Pond.  We sat on a bench and watched a family of ducks.  We watched people fishing.  We watched geese munching on grass nearby.  We were relaxed and happy.  A perfect time to broach the irritating subject of…MASKS!!

And to break the news to Aaron that on this day…in just a few minutes…he would be wearing a mask and I would be wearing a mask when we went to Aldi.

GULP!!

I helped Aaron with his mask before we exited the van.  He was not too happy, to say the least, but he did keep it on.  We hadn’t even opened our doors yet but I was telling myself, “So far, so good!!  The mask is ON his face!!”

“Okay!!” I happily exclaimed as we met at the back of the van and I took out my shopping bags.  “Let’s go shopping!”

We had taken only a few steps when…

“This is all TRUMP’S fault!!”  Aaron angrily responded.

Oh boy.

For some strange reason, since the virus first became an issue, Aaron had an issue with Trump.  He blamed the virus and the disruption in his personal life on Trump.  Who knows why?!

“Aaron,” I reprimanded firmly, “stop saying that!  Do NOT say that in the store!”

Aaron was quiet as we walked inside.  As he looked at some cookies, he made a comment about them and then stopped mid-sentence.

“My VOICE sounds funny!!” he blurted out.

“Then just don’t talk, Aaron,” I replied with impatience.  I walked away and Aaron followed, with me dreading what the next outburst might be.  I just wanted to hurry and be done with our shopping.  When Aaron gets upset like this, there is no pleasing him.  No pep talks.  No consolations.  No smiles (he couldn’t see them under my mask anyway!!).

Really, nothing helps but to end the misery and I was determined to not give him an easy out.

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Through the rest of the store he pointed out people who weren’t wearing masks.  I glared at him with my best glare!

He complained about being uncomfortable.  He said his ears hurt.  And the second we stepped up to the register line, he was done.  Off came the mask!

All in all, though, I thought it went pretty well.  Trust me.  It could have been FAR worse!

The following weeks have seen progress with Aaron and his mask.  Look at him here at his doctor visit in June!

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But there was a big hurdle ahead…one I really dreaded.

Going back to his day group, Paradigm.

Masks were being required there, although his wonderful staff said they all understood that not only Aaron but several of the clients might have serious issues with wearing a mask all day.

His first day back last week started out a little rough.  I walked in with him and my heart sank as he at first refused the hand sanitizer, and emphatically said NO each time he was reminded to wear his mask.  I left there and drove home with a very heavy heart.  But later, after he ate, he was told to look around at how everybody else had on a mask.  So he put his on and has done well every day since.

I was talking with some of the staff later in the week.  They are amazed at the resilience and adaptability from these special-needs adults.  They have so many challenges already on many various levels, yet there they are in their day group…happy, chatting together, eating, laughing, not able to go out in the community right now, some sitting in wheel chairs, struggling with all sorts of health issues and other problems…and they’re wearing their masks.

They’re not arguing about whether masks do a good job.  They’re not talking about conspiracy theories.  They’re not reading the latest media stories or listening to all the debates.  They just know that they are, at this point, required to add one more uncomfortable thing to their already uncomfortable lives…so they do it.

They just do it.

Sometimes I wonder if our special-needs ones, full of so much discomfort already, have an easier time adapting to just one more discomfort than do we.

We…who are acting a bit spoiled, I might add.

I have ONE thing that’s irritating to me on most days.  A mask.

I don’t have the myriad issues that Aaron and his friends at his day group have.

Then why am I the one that is quick to complain?

I am humbled, once again, at our wonderful special-needs population…many of whom were unable to be with their families for weeks as they were in lockdown in their group homes.

I am humbled by the parents of our special-needs angels…parents who are exhausted and worried and have yet one more huge concern to add to their already full plates.

So let’s follow their example and just do what needs to be done right now, thanking God for each day and not letting our little inconvenience of wearing a mask turn us into absolute grouches.

Smile along with Aaron, everyone!

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A Fun Fourth

Our Fourth of July was hot and sparkly, full of Aaron smiles and excitement, mixed in with too much quietness for my liking.  The quietness comes from not having our kids or extended family nearby.  I don’t even really like holidays for that reason, but I choose to count my blessings and enjoy our special Aaron times.

On Friday, Gary and I took Aaron out to eat at Cracker Barrel.  He loves that restaurant!  He left with a full stomach and a chocolate bar from the gift store, and ended up with a sack full of sparklers and other smoky, loud Fourth of July fun that we chose in the big tent a couple miles from home.

I’ll just leave you with pictures of our weekend, including a perfect front-row view of our town’s fireworks and the gorgeous full moon on Saturday night.   And lest I forget, we rescued a turtle that Gary found in our flower bed.  😊

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And my favorite picture of all says it all!

 

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Magical and Maddening

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

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

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

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

Then…BAM!!

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

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

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

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

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

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

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

Our evening was quickly reverting from magical to maddening.

Such is often the life of a caregiver.

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

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

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

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

Maddening.

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

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

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

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

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

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

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

And look what God gave me!!

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

It’s all in God’s hands!

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

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

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

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

Fireflies know, too, I am sure.

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

May I do likewise.

Photo by National Wildlife Photo Contest entrant Radim Schreiber.

 

Aaron’s Talking Points #8

Time for more of Aaron’s comments that I’ve collected over the years!  😊

 

I just watched Aaron chow down 4 slices of taco pizza that I fixed. Then he said, “You know, Mom……….that wasn’t my favorite.” And it took you FOUR slices to figure this out, Aaron?!

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This week, Luke B has started the next part of our remodel. It did not go unnoticed by Aaron yesterday that the baseboards in the hall are gone. He charged into the room where I was, excited and bothered.

“MOM!!! Why is Luke digging up the bottom of our house?!!” 😅🧐

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I’m heating up leftovers for supper tonight. Aaron decided he wanted some Ravioli Lasagna.

The time was 4:36.

Me: Aaron, do you want me to heat up your Ravioli Lasagna now?

Aaron: No. It’s not 5:00.

Gary: Are you hungry?

Aaron: Yes. But it’s not 5:00.

😁😜⌚⏲

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Gary’s working on his truck mirrors. Aaron was outside talking to him (of course!), so when Aaron came inside, I asked him what Gary was doing. His answer?

“Dad’s working on his look-out mirrors!” 😅😅😅

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I ordered a game for Aaron yesterday. I told him it will arrive in a week or in 10 days. Today he said, “So it’ll arrive in a week or in 10 days, which is a week & 3 days. That’s all, right?” He must know the EXACT day. We’ll have this conversation for the next week or week & 3 days! If it doesn’t arrive on time, I may take a trip for a week or a week & 3 days – far away!

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Me, at 11:37: Aaron, do you want some lunch? Some pizza?

Aaron: No. It’s not 12:00. Don’t rush me!

🤣🤣🤣

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I told Aaron that Gary and I were going out tonight. His response: “OK. Scram.” He doesn’t waste words.

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I was trimming our big Rose of Sharon bushes while Gary worked on our bathroom remodel. Aaron was helping me put the limbs in a trash can. He could tell that I was getting tired, so he had an idea.

“Mom! You should take a break…and fix supper.” 😅😛

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Aaron had seizures night before last and into the day yesterday. He was slow and quiet and all the other things that go into a seizure day.

But today…total opposite for sure. He was out of bed way too early for me on a Saturday morning, but not for him!

“MOM!! I woke up at 7:59, but I stayed in bed till 8:00! Was that good to stay in bed till 8:00?!”

Let me think before I answer that, Aaron. 🤔😜

Trust me, I was trying to pull up all my sympathetic feelings from yesterday as he stood in front of me before 8:30, fully showered and dressed and mouth working overtime

He followed Gary around like a little puppy, talking about anything and everything.

“DAD!! Have you heard about…?”

“DAD!! Have you heard about…?”

Finally, Gary muttered something for only me to hear…something about motor mouth. But sharp-eared Aaron heard it.

“YEAH, DAD!! Have you heard about Mighty Mouse?!!”

😂😂😂

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Aaron, talking about someone who got pulled over for speeding (it wasn’t me!!): “He was supposed to be going the speeding of 30, but he was going faster than that!”

The moral of this story: Speed the speed limit!!

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Aaron asked me to fix him some apples. Then came the big decision about when to eat the apples. Finally, he had a plan.

“I know, Mom! I’ll watch Pirates of the Caribbean during my apples!” 😁😁

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Aaron had one seizure last night. When he only has one seizure instead of three or four, that’s when he seems prone to having the serious drop seizures that have caused injuries. I ran out this morning before Gary went to work and bought Aaron a helmet.

Aaron is staying home today to:

  1. See if he has anymore seizures.
  2. Participate in helmet training

So far, we have seen:

  1. No more seizures
  2. No helmet training participation

I have constructed a scientific formula based on our testing today.

Autism + Helmet = BIG FAT NO!!!!

Further testing and participation look doubtful. 🧐😟😬😝

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I’ve shared before about how Aaron has a very difficult time understanding and remembering family relationships. Remember when he was struggling with the fact that Andrea was going to marry Kyle? We told him that he wasn’t losing Andrea but instead would gain a brother. Then on a bad day, he responded, “I DON’T want Andrea to marry Kyle!! I don’t need a Grand-brother!!” 😄

So the other day, this happened:

“Mom, guess who picks up Chris at Paradigm? Sometimes his younger dad, and sometimes his grandfather!!” 😂👨‍🦰👴

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Aaron: Mom, do you want to play Skip-Bo?

Me: Mmmmm…..

Aaron: Do you want to?

Me: I don’t know.

Aaron: So do you want to play Skip-Bo?

Me: Mmmmm…..

Aaron: Do you want to?

Me: I’m thinking.

Aaron: Well, I wish your thinking would HURRY!!

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