Talking Points #3

Aaron’s been having what may be Myoclonic (jerk) seizures on occasion. While I in no way take these seizures lightly, what he said about it yesterday was pretty funny. He said, “ALL my arms and ALL my legs were shaking!!” Excuse me now – I need to go count his arms and legs to see just how many he has!

 

Aaron likes to call us Master, sometimes adding a not-so-flattering word with it, like Master of Darkness. It comes from some of his games and movies. Yesterday at Aldi, I told him to carry our bag of groceries to the van while I put the cart up. “Yes, Master,” Aaron replied. The young mother also putting up her cart heard him, and just smiled. I wonder what she thought? Either that I’m a very stern mom, or that we’re way too hooked on I Dream of Jeanie.

 

Aaron: Did we get any mail today?

Me: Yes, we got three things.

Aaron: Was any of it bad? (Junk mail)

Aaron (Before I could answer): Did Dad tear any of it in that paper breaking thing? (shredder)

 

Aaron: Mom, you know what I noticed the Olympics is all about?

Pause for me to answer.

Me: What did you notice the Olympics is all about?

Aaron: SNOW!! It’s all about snow!

We’ve explained Winter Olympics and Summer Olympics, but I’m not sure it stuck. ☺️🏂⛷️

 

On our way home from his day group:

Aaron: I’m STUFFED!! The bacon and eggs you fixed for breakfast, and then I had burritos!

Me: You had burritos for lunch?

Aaron: Yes! Barb and Brandy took me and Yolanda to get burritos.

Me: Were they good?

Aaron: Yeah! The people asked if we wanted beef or chicken for the insides! 🙂 I got chicken!

I never thought of burritos as having “insides.” Not sure I WANT to think of burritos as having “insides!”

 

I sent some food with Aaron to Paradigm today – peanut butter crackers, cucumbers, a granola bar – so he just told me that they stopped at Quik Trip and he bought two sausage biscuits and a slushie. He added, “Later I ate the food you sent so it would settle my stomach.” Tomorrow I’m just sending Pepto Bismol.

 

Aaron’s ear was bleeding, so I asked him what happened.

“I was scratching an itch off my ear!” 😄😄

 

I asked Aaron what movie they went to see today.

Aaron: We saw Samson! He was Noah’s brother, right?

And later: God gave Samson his strength. Then he could beat up people!!

I think we need to revisit that Bible story. 😁

 

Aaron walked up behind me at 6:44 this morning. He had just gotten out of bed, not even stopping at the bathroom first.

Aaron: Mom, guess what I saw?

Aaron then waited on me to guess.

Me: What did you see?

He reached into his right pocket. Nothing. He reached into his left pocket. Nothing.

Aaron (finally!): Spiders!

Me: WHAT??!! WHERE??!!

Aaron (very calmly): On my floor.

Me (not very calmly): OH DEAR!!!

I grabbed my glasses as I tried to gather my nerve and wondered if our exterminator could make an emergency call today…or if another emergency call would be made and I would soon be in an ambulance.

Aaron was in no hurry as he walked up the hall to his room. TORTURE!!! Once in his room, he turned and gave me a smile. And I knew.

Me: Aaron! Did you just dream about spiders?

Aaron (flatly, but with that smile): Yes.

He is quite happy that he pulled one over on Mom. He should be happy that he is still standing and breathing!

I am, too. Still standing and breathing, that is. And happy. Happy Aaron’s little story was so clever…and NOT true!!

🤣😲🕷️🕸️

 

Aaron went to the mall today and was telling me that he got an M&M ice cream thing at Dairy Queen. I had told him not to get the triple death by chocolate upon chocolate thing that he usually gets, so he was quite proud of himself for just getting the M&M creation. Then he told me that his friend, Shauna, saw him eating it.

Aaron: Shauna told me that was her favorite.

Me: Did she?

Aaron: Yeah. So is it OK that when it was half high, I let her have the rest?

Aaron not only has a sweet tooth, he also has a sweet side. He loves giving things away to his friends.

And I LOVE how he described giving it to her when he had eaten some of it while Shauna watched. He didn’t give it away until it was “half high.”

He’s not half bad, is he?

And of course I told him it was a very wonderful thing to do.

 

Me: Aaron, go ahead and take your pills. It’s 9:30.

Aaron, pushing up his sleeve to see his watch: It is not 9:30.

Me: What time is it?

Aaron: 9:26.

Me, in my head: AAAHHHHH!!!!!!!!!!

There. I feel better.

 

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No More Dog

A year ago we had to say goodbye to our sweet and beautiful Great Dane, Jackson. I wrote about Aaron’s reaction – so priceless and telling.

He Said What?!

Yesterday was the day that Gary and I have talked about and dreaded for so long. We had to say that final goodbye to our precious Great Dane, Jackson.

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What a beautiful and wonderful dog he was to our entire family!

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In 2007, Andrea really, really, really wanted a dog…a BIG dog! Gary and I really, really, really weren’t sure. But finally, we said yes and the rest is history. Jackson was born in May of that year, so he lived a good and long life of nearly 12 years, surpassing the normal life span of a Dane.

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After a few years, Andrea moved to Texas for grad school, and stayed there for career and now marriage. Jackson stayed with us and enjoyed visits over the years from Kyle and Andrea’s doggies.

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Aaron loves animals and Jackson was his special friend. Patient, kind Jackson tolerated Aaron’s noises, Aaron’s behaviors that…

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Tired of This

Recently, Aaron had his Epilepsy doctor visit.  After his appointment we had to walk over to the building next door for Aaron to have some blood drawn.  His liver function needs to be checked routinely due to one of his newer seizure drugs.  Aaron wasn’t thrilled about that because he really wanted to hurry up at the doctor and then go to Pizza Hut like we had planned.  Eating lunch out, after all, is the real reason Aaron was with me that day.  At least that’s the real reason according to Aaron.  Going to the lab was just another annoying delay in reaching his true objective.  The Pizza Hut Buffet…oh, and Wal-Mart after that.  We mustn’t forget the all-important Wal-Mart visit!

The next morning found us going down to the air base for yet another lab visit for Aaron.  This time we were preparing for Aaron’s 2-year physical, so labs had to be done ahead of time for that.  No matter that we were getting some sleet and snow – we needed to get this done.  Aaron had resigned himself to no lunch out that day but instead I would take him to his day group on my way home.  However, our van engine light came on, so I had to go back over to our side of town…run to our shop to ask about the light…and by then, I just decided to keep Aaron at home.  Happy Aaron!  A tiny bit frustrated Mom.  And an even happier Aaron when he heard the words “Taco Bell” come out of my mouth.

On the following afternoon, the air base called to tell me that they had messed up on one of Aaron’s tests.  We would need to come back and have more blood drawn.  UGH!!!  Fasting blood work, which would mean getting there in the morning.  But the next morning I had to take Gary to his foot surgeon appointment.  Gary, who still wasn’t driving due to his surgery.

I’m just scratching the surface of my life right now.  And honestly, I’m not complaining.  I’m just reporting.  (Thank you, Alice Zwemke, for giving us that wonderful statement so many years ago!!).  😊

There we were on that cold Friday morning, back at the air base lab.  Aaron was dreary and slow, tired in several ways.  He pulled up his shirt sleeve without being told because he knows the routine so well, looked at his new watch perched halfway to his elbow the way he must always wear it, and slowly stretched as he waited for the tourniquet and needle.

 

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“I’m tired of this,” he muttered in his resigned monotone voice.

There went my heart.  I wanted to scoop him up in a motherly hug, but it wasn’t the time or place for that.  Besides, motherly hugs rarely have a time and place in Aaron’s autistic world.

But I had another reaction as well.  The depleted side of my spirit nearly kicked in.  My thought was this:

“YOU’RE tired??!  I’M the one who’s tired!!”

Yep.  Those truly are the words that swarmed around in my head.

Tiredness has been closely following on my heels lately.  Not just physical tiredness, although that is certainly present, but a soul weariness that has crept into my spirit.

All of us reach that point at some point.

“I’m so tired of ________.”

Then all of us can fill in that blank…or several blanks, right?

With Aaron, being his mother AND his caregiver, I am pulled this way and that.

Seizures.  Autism.  Medicines.  Side effects of medicines.  Weight loss.  Low sodium.  Needs to eat more.  Needs to drink less.  New medicines.  New side effects.  Blood work.  Behaviors.   Routines.  Disrupted routines.   Needing caregivers.

Sometimes I’m just so tied up in all of it.

And tied down to all of it.

Discouragement can sneak in unexpectedly.  A comment.  A picture.  A thought.  I can let it get to me in ways I know I shouldn’t.

Discouragement can roar in like a Kansas tornado.  A seizure.  A behavior.  A disappointment.

What I do at that point with my discouragement is key to my frame of mind from that point forward.

I can nurture a heavy spirit, or I can let the Holy Spirit do His sweet work in my heart.  I can’t change my situation, really, but I sure can work to change my attitude.

I do this through thinking more about my blessings than my burdens.  No matter what, I do have so many blessings and it does my tired heart good to think about those instead of wishing for what isn’t.

Another thing that helps me is to go to my Bible, especially the Psalms.  For instance, just read and hear the wonderful instruction and hope in these verses.

When I thought, “My foot slips,” Your steadfast love, O Lord, held me up.  When the cares of my heart are many, Your consolations cheer my soul.             

(Psalm 94:18-19)

It’s not a shallow pep talk.  It’s listening to God Himself and trusting that He knows where I am and what I face…and He cares!

Then sometimes there are extra nuggets of love from Aaron himself – rare as nuggets of gold – that warm my soul and remind me of the value of this life that God has given me.

Not long ago, after some seizures and while we watched a show, Aaron looked over at me and surprisingly said:

“Mom, I’m glad you’re caring for me.”

He rubbed his hands together happily as he saw the smile on my face.

“I’m glad I’m caring for you, too, Aaron,” I replied.

And very, very glad that God is taking care of us both!

 

 

A Cow Up Close!

Our sweet friends, Bing and Lolly, lead our Life Group.  At our last meeting, Bing was showing a picture of an adorable calf that was born just that day to the cow owned by his son and his wife.  Troy and Nikki have a few cows, some goats, ducks, and chickens at their country home.  And I must mention their beautiful Husky named Winter.

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Aaron loves cows.  We always look for cows in the various pastures that we pass as we drive around our side of town.  So, I asked Bing and Lolly if it might be possible to bring Aaron to see Troy and Nikki’s cows, along with the cute little calf.

“Absolutely!” they said.  So last Saturday Gary and I drove with Aaron the short distance to Troy and Nikki’s house for a little animal time.  It was SO much fun to just watch Aaron relax and interact with the animals.  Nikki was very patient and sweet with Aaron, helping him feed and pet the mama cow and the goats; pet a chicken; and watch Winter jump up high for a bone.

The precious little calf kept his distance but oh, he was just the cutest little guy!

I’ll let the following pictures do the talking.

 

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Aaron really does love animals.  He had such a good time!

And so did Gary and I.  Moments like this are a gift to us that can’t be bought.  They can only be experienced, and for that we are truly thankful.

 

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Talking Points #2

Aaron is hovering, in count-down mode until he and I watch a DVD tonight. Every couple minutes he wanted to know what I was doing now, and what I was doing next. AAAHHHH!!!!

Finally, I said, “Aaron, you go do your thing and I’ll go do my thing, and then we’ll watch a DVD.”

Aaron: “What kind of my thing are you going to do?”

He doesn’t deter easily. 😛🙃

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One of Aaron’s staff is pregnant. Just now Aaron said, “You know what I don’t do anymore? I don’t call Misty ‘Miss Fatso’ anymore.” Oh my word!

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I fixed stir fry for supper. Aaron was chasing a green pepper around his plate with his spoon and finally said, “This pepper keeps slithering away!” Yep, I fix some very interesting stir fry! Dare to try some?

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Aaron told us that he saw a big Great Dane in a pet store the other day. We asked him what the dog looked like and he said, “He was black with white spots and they were NOT dandruff!” That is SO good to know!

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Aaron knows that often on Saturdays I just wing it for supper. And sometimes we have his dream supper – PIZZA! So every Sat. morning he begins the questioning and it lasts all day – “What’s for supper, Mom?” But just now, with no satisfactory answer, he changed his tactic – “Mom, do you wonder what’s for supper?” Yes, I do, Aaron! I wish someone would tell me!

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Aaron was talking about the hot and cold air masses that collide and cause tornadoes. Here’s how he explains it: “Spring and summer get all mixed together!” Couldn’t have said it better myself!

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Aaron and I scooted down to Dillon’s on this snow day. I got some Chinese food, including some Crab Rangoon. Aaron was excitedly telling Gary about it because there are some for him to eat – if he will.

“DAD!!! Mom got Chinese food at Dillon’s and she got some CRAB LAGOON!! Have you ever had CRAB LAGOON?!!”

I do think we’ll pass, Aaron. 🤢🤮😁😁

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Aaron this morning, standing outside my bathroom door:

“Mom! This will make you laugh! Even though I went to bed at 9:02, I woke up at 11:39 and thought it was time to get up!!”

I’m laughing, yes, but not for the reason Aaron thinks. 😂😂

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A massage therapist comes to Aaron’s day group every Wednesday to give the clients a massage. Aaron, who notices everything, was telling us this past Wednesday about the music that she plays while giving the massage. Nature music, you know….calming and soothing music.

Aaron: It sounds like music that goes outside!!

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As part of Aaron’s Friday special goody bag, I got him a small bag of cheesy popcorn. I wasn’t sure if he liked it, but I am sure that I do. He has ignored it, so I decided that I could no longer resist. I quietly opened it while telling myself that I will buy him a new one tomorrow. The only problem is that he walked in the family room and saw me eating from his bag of cheesy popcorn. I was caught red handed, and feeling like a kid when Dad would find the stash of candy under Jan’s and my pillows at night. Aaron stopped dead in his tracks when he saw me on the couch eating his cheesy popcorn that he had totally ignored for two days.

Aaron: MOM!!! That’s MY popcorn!!

Me: (Feeling like a terrible mom and a lousy thief) I’m sorry, Aaron. I’ll buy you a new bag tomorrow.

Aaron just stared at me.

I stared back, feeling like the tables had turned from what they usually are. I was the guilty one. I was squirming.

Finally…..

Aaron: You are a very foolish woman!

And he walked away while I didn’t know whether to laugh or to crawl under the couch.

I have been duly reprimanded by my autistic son!

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Last night, Aaron was planning our lunch location for today, before his dentist appointment.

“Mom!! Can we eat at Border On The Grill??” 😅😍😋

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“Mom, this has vegetation stuff in it!”

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Aaron knows that when he sets the table, I always tell him to wash his hands. So this evening, after eating a few M&M’s, he offered to set the table for supper.

“Mom, can I set the table? And my hands are clean because I washed the M&M grease off!”

😁😝🤔

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Aaron: MOM!! Fruit Roll-Ups look like carpet!! 😆😆

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Aaron saw a McDonalds commercial and asked, “Mom, what’s the AGNES steak burger at McDonalds?” Not sure I want to try it and find out now.

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At 4:48 p.m. –

Me: Aaron, would you like some Mac and Cheese for supper?

Aaron: Yeah!!

Me: O.K., I’ll fix you some.

Aaron: But not now. It’s not 5:00.

(Supper is at 5:00, people!!)

Me: But I can start it now.

Aaron: Then it’ll be 5:00 when it’s ready?

Me: Yes, it will be 5:00.

So Aaron’s world was set straight, and supper is not going to be BEFORE 5:00!!!!

The End. (But not really). 🤣😜😋❤️

 

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Number 10 Song

I was already fairly saturated with Aaron issues when he and I walked out to the van this morning.

Him standing outside my bedroom door earlier, wanting me to come look at his bed – and me knowing what I would find.

“Aaron, is your bed wet?” I asked.

“Yes,” he answered.  “And my pajamas.  Come look!”

My day was already taking a track I did not plan.

Him saying he didn’t want to go to his day group today because of the Valentine party.  No surprise there since he doesn’t like parties, of all things.  Too noisy, says the loudest person I know.

Him wanting to take his wallet if he did go to Paradigm, even though he didn’t need money on a pizza day.  I know his plan.  Give money away if he can get by with it.

Him wanting to take snacks even though food was to be provided today.  Again, his plan is to give food away even when he’s not supposed to do that.

There I was, redirecting and being level and not reacting and listening to him tell me that everything was my fault – including any possible seizures he said might happen today.  I didn’t hear a seizure last night and he doesn’t act like he had a seizure, but he was laying claim to that possibility in an effort to stay home.

He finally came around and compliantly went to the van with me, where he immediately wondered where his CD of choice was.  I had removed it earlier this morning along with a stack of others.  Varying choices I offered were not acceptable as we sat there in the driveway.

Finally, I saw one!  The Oak Ridge Boys Ultimate Collection!  He had wondered only yesterday if we had any other Oak Ridge Boys CDs.  We had just finished listening to the two that I remembered having, so this other one I saw laying there was a real find!

Or so I thought.  Aaron was not impressed.

He mumbled something about the other Oak Ridge Boys CDs…and I knew what was going on here.  He really wanted to listen to this third CD but not without completing his order of listening.  I knew that there was no other choice but to go back in the house to get the two CDs that were in that stack I had earlier removed.

“Seriously?!” I thought as I headed in the house.  “Why are you so…so…RIGID??!!”

I climbed back in the van, carrying the hopeful source of Aaron’s contentment.  Then I learned that Aaron didn’t want to listen to both of the CDs again.  He wanted…NEEDED…to complete the one that we had not finished yesterday.  This must be done before he could begin the new CD.

“We were on number 10,” he flatly said as he pushed the CD in the slot and pressed the button until number 10 was on the screen.

Aaron visibly relaxed as number 10 song began to play.  He was still and quiet, his hood pulled over his head and his gloved fingers entwined together.

 

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I say this often, but Aaron’s world was made right in that moment.  He seriously must finish the prior CD by the same artist before he can begin the new CD.  I do not feel that angst that Aaron feels, but I will certainly feel his angst if I do not cooperate with his very ordered view of his world.

I can’t be selfish, tired and frustrated as I may be at that moment.  Selfishness will only increase Aaron’s frustration and will lead to more conflict which will not in any way help our situation.

Aaron needs understanding.  That’s all.

Oh, and a dose of love.

He doesn’t want hugs and kisses, gooey words and all that sort of stuff.

He wanted me to get the CD, and to not make him feel dumb for needing it.  This is Aaron’s love language.

As we drove away, finally, the number 10 song was playing.  It’s a pretty song, and suddenly my heart was very touched as I listened to these words:

“You’re always in my heart, and you’re often on my mind.”

My love for Aaron was being sung in that number 10 song.  The tears trickled from my eyes, but I couldn’t let Aaron see me cry.  My tears make Aaron very uncomfortable.

“I like that song,” I said as it ended.

“Do you want to play it again?!” he asked with excitement.

“Sure!” I happily answered.

My affirmation, on every level, was just what Aaron needed.  But so did I.

Aaron is often on my mind for less than pleasant reasons.  Worries.  Frustrations.  Anger.  Dilemmas.  Prayers.

But Aaron is often on my mind for happy reasons as well.  Joy.  Humor.  Uniqueness.  Thankfulness.

He is always in my heart, for all the above reasons.

He needed more than Skittles and a goofy love card this morning.

 

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He mostly needed…and needs EVERY day…to know that despite my weariness and my worries, I get him.

Because I get him, I got his CD.

I liked the number 10 song.

That’s the BEST heart gift for Aaron…and for ME!!

 

 

 

 

The Bedroom

Aaron went to the Goddard Day School for three years, graduating from there at the age of 21.  His teacher, Tom, was just wonderful with Aaron and with all the students.  Tom would have one-on-one time with each student.  He would fix tea, sit with each one, and just talk and connect.  Tom called that time Tea with Tom.

When Aaron was a senior and ready to graduate, he was allowed to quit going to school earlier than those students who weren’t seniors.  Tom was still teaching, so one day he contacted me and asked if he could have one more Tea with Tom time with Aaron.  He said he would come to our house, so we agreed on a day for Tom to come. 

On the morning Tom was to arrive, I had things ready for our Tea with Tom.  Tom wanted me to join him and Aaron.  Gary was at work, even though he had a bad cold, and couldn’t be there for our tea time.  That little detail about Gary having a cold is important.

So is the fact that off our kitchen, down a couple little steps, is a guest bedroom.  And a small bathroom.  Because of Gary’s bad cold which made him cough all night, he had been sleeping in that guest bedroom.  This is another important detail to know. 

Tom, Aaron, and I were enjoying our tea as we sat at the kitchen table.   Aaron was full of non-stop talking, as always, and Tom was his usual patient self. 

Tom turned to me at one point and asked if he could use our bathroom.  I pointed him in the direction of the small bathroom.  As he headed that way, he saw the bedroom and for some reason he commented about it.

“I didn’t know you had a bedroom there,” Tom innocently said.

And before I could even reply, Aaron answered.

“Yeah,” he flatly replied to Tom.  “That’s where my Dad sleeps.  He doesn’t sleep with my Mom anymore.”

Well.

There it was, on the table……like a family secret thrown out there for Tom to know.

I was horrified.  Mortified. 

I looked at Tom, my face flaming at this point.  But Tom had turned and was heading for the bathroom.

“It’s not that way,” I somehow managed to say.

“You don’t have to say a thing,” Tom answered.

“YES, I DO!!!!” I blurted out.

So I explained Gary’s cold…..and his coughing……and his thoughtfulness in sleeping in the guest bedroom so as not to bother me……and that he and I were fine. 

Why was I having this conversation with a man??!!

And Aaron, as usual, was oblivious to my embarrassment and to Tom’s discomfort with the direction this conversation had taken. 

When Tom returned, our Tea with Tom resumed.  We chuckled and nothing else was said about this family secret, at least not that I remember.

Some things are best forgotten. 

Some things still make us laugh, years later. 

And Aaron…..nothing much escapes his notice. 

And he will tell it…..sometimes yell it. 

Every.  Single.  Time.

 

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