I Can’t Wait!

Waiting patiently for anything is not a strong suit of Aaron’s.  Whether he is waiting for me to get off the phone or waiting on a huge surprise, it doesn’t matter.  Patient waiting is a foreign concept to him.

This is why we often don’t tell Aaron of an upcoming event until shortly before it actually occurs.  Too bad he knows when his birthday is because he is in planning mode for months before the big day. 

Earlier this year, a big dinosaur exhibit was coming to town.  Gary and I decided to take Aaron and to make it a surprise, more for our sake than anything.  The big day came…tickets were bought…plans were in place…and finally I told Aaron that we were taking him on a surprise adventure. 

It wasn’t THAT long before we were leaving that I broke the exciting news to him, but oh my goodness!  I quickly realized that I should have waited until we were in the van and on our way before uttering a word about our surprise trip.

Aaron can hover better than any hummingbird or helicopter.  He hovered outside my door as I got ready.  He knocked and knocked on the door, asking if it was time to go yet.  He lingered outside the bathroom door as I dried my hair.  He stood right beside me as I brushed my teeth, asking questions and wanting me to answer even with a mouthful of toothpaste. 

“Aaron!!” I finally said, “quit being so impatient!!  Leave me alone and let me get ready.”

I enjoyed a few moments of blissful quiet…until he once again knocked loudly on my door.

“But MOM!!”  he exclaimed, “I don’t have anything to DO while I’m being impatient!!”

Let me say, I am so much like Aaron when God has me wait for something, especially something that I have prayed about for a long time.

Look at Isaac and Rebekah.  Isaac married Rebekah when he was 40 years old.  No children came, however, because Rebekah was barren.  In Genesis 25 we read that Isaac prayed on behalf of Rebekah and she conceived.

But guess how long it was before that happened?

20 years!

YEARS!!

Can you imagine the disappointment, over and over and over?

The sadness?

The comparing themselves to others who had HOW many children during the time that they waited…and waited…and waited on God to keep His promise.

As Dale Davis points out in God’s Rascal, The Jacob Narrative, Isaac’s non-chosen brother Ishmael had 12 sons.  What’s up with that?!

But Isaac didn’t just idly or impatiently wait.  We’re told that he prayed on behalf of his wife. 

The Hebrew term used there means that Isaac didn’t just pray FOR his wife.  It indicated that he prayed in front of her…in her presence.

I found Isaac’s action in prayer to not only be very encouraging but also very precious.  He led Rebekah and he joined her in her pain…in their pain…as they waited for God’s answer.

Sometimes things seem so hopeless.  We don’t see answers coming.  It’s so easy to lose heart, especially when we have prayed and prayed and prayed.

I love this verse.

Right now, Aaron is laying on our couch downstairs.  He had three seizures this morning.  He is almost 38 years old and has had seizures since he was 7 years old.

I look at him as he ages, and I see the effect of all these years of seizures…of the toll they have taken on his body and on his mental abilities. 

But I know that as much as I love Aaron, God loves him even more.  And God loves me. 

He loves us and He has a reason that I will probably never know on this earth for all that Aaron has suffered.

So, I cry out to God.

And I know that God’s inclination is to lean down and hear my cry. 

Isn’t that a precious picture?

He joins me in my pain and in my waiting.

Am I always patient as I wait on God?

No!

But unlike Aaron, there IS something I can do while I’m being impatient and that is to pray.

And to praise, as David continues in Psalm 40.  Sing a new song of praise, which will be a testimony to others.

After all, “How blessed is the man (or woman) who has made the Lord his trust.”  (Psalm 40:4)

Gotta run.  Aaron is awake now and is planning our evening already.  😊 

The Normal Road

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Aaron is Still…….

Time slips so quickly away from me.  I feel the frustration of having more to do than I have hours in the day.  Blogging regularly is one of the things that continually gets pushed onto the back burner of my life.

Speaking of back burners, our kitchen is nearly finished.  We’ve been fully using it for several weeks now.  I love it!   Our second new refrigerator was delivered a week ago.  Our first new fridge didn’t work for even one second and it was an ordeal getting the company to approve and deliver a new one.  Just another first world problem.  Our refrigerator in the garage filled the need.  All our furniture is in the family room and other rooms.  We slowly are settling in and are very thankful for Luke’s diligence during a difficult process due to supply issues and being short staffed.  We have no complaints.  I will show pictures when the kitchen is totally done.  Did I say we LOVE it?!

So many times, as we live life with Aaron, I find myself saying, “Oh, I want to share this!”  Yet this life with Aaron is one reason that I DON’T get to share all that I want.  He does keep me very busy.  So, let me just give a quick update and maybe more expounding will come later…but don’t hold your breath too long.

Aaron is still an adventure sitting across the table when we eat out.

Epic straw wrapper blowing, Aaron!

Or when we go shopping.

He is still trying to get Moe, our neighbor’s cat, out from under Gary’s truck.

He is still talking to our neighbors EVERY chance he gets…and we are still so thankful for very patient and understanding neighbors who are true friends.  Gina sent me this picture and said, “I took this the other night when he was telling us all about life!”  Derek has the same look on his face that we often do!  😊  😊

He is still popping over to Amanda and Colby’s house, where she put him to work one recent night making Kool-Aid.

He is still melting our hearts with his sweet relationship with Mollie.

He is still sharing things with everybody, like making sure we took this new pack of gum to Andrew a couple weeks ago when we spent time with him at a race. 

He shares this life of his with me and Gary every single day. 

What Aaron shares is funny and fascinating and sometimes very frustrating. 

Gary and I often laugh and always listen to his abundant talking.

But the frustrating parts of Aaron…well, we still know that we need to handle that with the same grace that God extends to us…every single day.

Easier said than done…and the subject of another blog…maybe…when life settles down.

Did I say don’t hold your breath?  😊 

Don’t Try to Change Me!

The word “change” is not a welcome word to many who deal with the issues of autism. 

You can phrase that concept any way you want.

“Come on, just roll with the flow.”

“Be flexible!”

“Try it.  You’ll like it!”

I have told you how Aaron won’t eat his popcorn at the theater until the actual movie begins.  The commercials before the movie are NOT the movie.  Neither are the sometimes endless trailers that are then shown.  Trailers are NOT the movie!  Aaron will continually look down at his big tub of popcorn that he has placed on the floor beside his feet, waiting expectantly to dig in when finally THE movie begins.  Then he will pick up his popcorn and visibly relax as he begins to eat. 

Aaron does the same thing at home.  When we sit down to watch a show, he will lay his snack close to him, but he will not begin to eat it until the show actually begins.  He will sit through opening credits.  He will sit through a long intro such as Blue Bloods has.  You’re not going to fool Aaron.  He knows that these programs are tricky and that they have opening music that hasn’t played yet, so don’t EVEN try to get him to eat until all the preliminaries are over and done.  Ice cream may even start melting, but Aaron doesn’t care. 

Aaron has carried this “waiting for the actual event to start” idea over to his music that he listens to in the van.  This past Thursday we started on our way to pick up our food delivery for Meals on Wheels.  We had been listening to Brad Paisley.  I pushed the button to start the music.

Aaron pushed the button off.

I pushed the button back on.

“MOM!  I don’t want to listen to music right now!”

“I know you don’t, but I do,” I replied.

He pushed the button off.

I pushed the button back on.

“MOM!!” he protested, “I said I don’t want to listen to music!”

“It’s not just about you, Aaron,” I responded with more patience than I felt.  “I do want to listen to music.”

Aaron was still and quiet for a few seconds.  Then off went the button again. 

I sighed a very deep sigh.  My lungs are in such great shape, living with Aaron.

“Aaron,” I began, “you want to wait until we actually start delivering our meals before you turn on the music, right?”

“Yes,” he replied.

“But we can listen to music now.  It won’t hurt anything to do that,” I told him.

I pushed the button back on.

I could feel the pressure building in Aaron, just like my pressure cooker at home.

He pushed the button off.

“Mom,” he began, “uh…you know…uh…”

And thus began Aaron’s attempts to start a conversation under the guise of wanting to talk instead of listening to music.  I just decided to let it go.  Hey, that’s a song!  It should be my theme song!

Bless Aaron.  I know he can’t help it, but really…!

Later that afternoon, Aaron was very happy that Gary was going with us to Nellie’s Pond for a walk.  But there was that issue of Aaron wanting to sit in the front seat of the van because that’s where Aaron sits when I drive and he and I are usually in the van by ourselves so the front seat is his and that’s the way he likes it and that’s the way it should always be…..

“Mom!” he began as he was processing his plan, “I know.  Dad can ride in his truck and you and I can take the van!”

“No, no Aaron,” I said with a laugh, “that’s not the way it’s going to be.”

But Gary, in order to give Aaron a perfectly happy experience, sat in the back seat while I drove, and Aaron sat in his front seat.

Just the way it should be, in Aaron’s world.

And sometimes we do put ourselves into his world…actually, lots of times…so that he can relax and have total fun.

Walking through life with Aaron…balancing discipline with the rigidity of autism…is certainly an exercise in patience and wisdom. 

Gary and I do not possess either of those qualities in the abundance that is usually needed but I am so thankful that God gives and also forgives.

So often, too, I find that it is me who needs to do the most changing.  God knows that all too well!

I wonder how often I am the Aaron in God’s life.   😊

Glamorless Glory

“Mom,” Aaron quietly said as he was getting ready for bed, “my toilet is stopped up.”

Aaron dreaded telling me this.  It was the third time in a few days that he had managed to stop up one of our toilets.

And this third time was NOT a charm, but instead was a huge mess.  I could have gotten Gary to do the dirty clean-up. 

“No,” I thought, “I can do this…yet again.”

I did think a few times that I really should have called Gary.  UGH!!

This was an opportunity for me to practice the patience that God is trying to teach me.  And to…once again…school Aaron on the proper treatment of our toilets. 

Why do these things happen so often at night when I am most tired?!

You know, being a caregiver of any sort can be exhausting.  Being a mom…a homemaker…the one responsible for the needs of whomever is under our care…has its many moments of humbling work.

Special needs or other health issues certainly add to the mix a new level of care.

And a new level of seemingly lowly service. 

Because face it, cleaning stopped-up toilets or throw up or wet bedding is not exactly something to write home about.

Even as Christ followers, we envision that the far-away mission field is more glorious and honoring than the dirty work we often do within the walls of our own home.

Not long after this third toilet episode, as I lay in bed reading, I felt compelled to check the FB page of my favorite author, Dale Davis.

His son had posted this piece.  I hope you will read it slowly and fully.

“When Mary was not nursing her son, she placed Him in an unused feeding trough (of wood or stone) right next to her…But a feeding trough! Let us never be surprised at the humility of God. The Westminster Shorter Catechism asks (Question 27) Wherein did Christ’s humiliation consist? Its answer begins: ‘Christ’s humiliation consisted in his being born, and that in a low condition…’ Its scriptural proof text for that ‘low condition’ is Luke 2:7. In a feeding trough, needing a mother’s breast and a change of diaper. How very incarnate the incarnation is! And yet what encouragement is here. For if Christ stoops so low, to such a ‘common’ level, does this not sanctify all that seems common and ordinary and unimpressive in the lives of His people? To be quaint and go back a few years–the weaver laboring at his loom, the farmer putting up hay, the mother cleaning her oven, or the teacher tutoring her ‘slower’ student in reading, the accountant preparing tax returns, the pastor reading in his study, the doctor diagnosing a perplexed patient. Jesus’ feeding trough suffuses all the glamorlessness of our callings with a touch of His humble glory.” (Dale Ralph Davis, “Luke 1-13: The Year of the Lord’s Favor”, pp. 46-47)

Tears slid down my cheeks.  For Christ, who stooped so low to be born in a dirty animal cave, and laid in a feeding trough, does sanctify and will honor the grimy and the mundane work that I do…even if I do not see the results of it.

God has always chosen to use the less than exciting places and people and moments in order to draw attention to His glory.

Jesus’ mother, Mary, was a very young teenager in a town that was looked down upon by everyone.  She and Joseph were poor and unknown.  They were no doubt the subject of malicious gossip because of Mary’s pregnancy.  Then Jesus was born in the humblest of places with no great fanfare.  Mary and Joseph had to escape to Egypt in order to survive Herod’s wrath. 

And all through Jesus’ ministry we see Him using the most common people in the simplest of places in order to proclaim His message.

How can I wonder if He is doing the same with and through me? 

I have no doubt that many of you are feeling like me so many times – like I am in a rut of caregiving and for WHAT?

But may we not allow the allure of the world’s values concerning glamor to be ours.

May the touch of God’s humble glory turn our glamorless callings into moments of praise and joy.

And may we be grateful for every stopped-up toilet as we see it through God’s eyes…an opportunity to share in His humility and to give Him glory. 

Messy Grace

Last Friday when I went into Aaron’s room to wake him up and get him going for the day, I knew that something was off.  Sure enough, Aaron’s bed was soaked.  He had a seizure the day before, but I hadn’t heard one that previous night, so maybe he just drank too much water before bed.  Thoughts of that continuing issue with the amount of water he drinks made me a little irritated.

So did the fact that because of so many other things going on…and now tons of laundry to do…I had to cancel lunch plans with a friend I hadn’t seen in forever.  This was our second time to cancel.  GRRRR!

But I’ve learned to look at the positives at times like that.  I have a washer and dryer, and they work.  I have the time and freedom to change my day around.  And now Aaron’s bedding would be totally clean and fresh.  Every single bit of it…from the mattress pad up!  Oh, and I am ALWAYS very thankful for a super heavy duty and trustworthy waterproof mattress pad!  Am I ever!

The rest of our day went as planned.  I picked Aaron up from his day group, we went to Wal-Mart, got subs for supper, watched a qualifying run of NHRA racing, and had a nice time with all of it.

Later, not long before I was going to get Aaron from his room so we could watch a Walton’s episode, I heard a thump.  I was sure it was from his room.  I heard him walking so I knew it wasn’t him.  Soon he was in the family room, looking at me with some hesitation on his face.

“Mom?” he asked in a measured tone.  “Can you come to my room?  I need to show you something.”

I was comfortable on the couch.  It was nearing 8:30. I was winding down physically and mentally.  I was in no mood to go to his room and probably look at something on his computer that he just HAD to show me.

“Aaron, I don’t want to go up to your room right now.  Let’s just watch The Waltons,” I countered.

“No, Mom!” he insisted, “I need you to come up to my room now!”

Then I remembered the thump.

“Aaron,” I began with more calm than I felt.  “Did you break something?”

“Yes!!” he answered.  “It was my lava lamp!”

Now, you must understand that this was not just any lava lamp.  This was a GLITTER lava lamp. 

I was such a good mom at that moment.

“OH AARON!!!  YOU DIDN’T!!!!” I not-so-calmly replied.

I did not want to walk up those stairs.

I did not want to walk in his room.

I did not want to see what I soon saw.

There, on the floor beside his bed and under his bed was thick blue oozing goo. 

And not just any goo.

It was thick blue oozing GLITTERY goo!!

Let me tell you, I groaned and I huffed and I puffed and I complained the whole entire time I was cleaning up that awful mess. 

Poor Aaron wanted to help but there wasn’t much he could do.  I knew that there wasn’t room for both me and Gary to be in there working so I didn’t even tell him what was going on.  I just continued to bluster and blow as I sopped up the thick mess with a couple of old beach towels.  I even told Aaron to just throw them away.  I didn’t want eternal glitter in my washing machine!!

My washing machine, which had been running a good part of the day already as I cleaned up Aaron’s OTHER big mess!!

Oh, how my mind was working!  Poor me!!  My life is all about overseeing and cleaning up one thing after another!  Boo-hoo-hoo!! 

But I looked up from where I was kneeling on the floor trying to shine a flashlight under the bed so I could see sparkly goopy glitter hiding out…and there was Aaron sitting cross legged on the bed, telling me over and over that he was sorry.

Wanting more than anything to DO anything to help me.

My heart kinda broke for him and I felt such empathy for him.

That’s grace…not the kind that I can create, but the kind that God puts in my heart for this special son who can surely push my buttons but pull my heart strings at the same time. 

Later, after all the clean up and after the Walton’s was watched…as we got Aaron’s bedtime routine completed…a storm rolled in.  If there is one thing that Aaron absolutely loves, it’s a storm.

“Mom!!  Do you think I should keep my blinds open?”

I told him yes and to enjoy the lightning.  I was going to bed, finally, and that is all I wanted to do. 

But that’s not all that Aaron wanted me to do.

“MOM!  Come look at the lightning!  It’s BRIGHT!!”

Soooo, I stifled my huge sigh and walked once more into the room that twice already that day held so much frustration for me.

I stood at Aaron’s windows for a minute and soon there it was…FLASH!!  Bright lightning, followed by Aaron exclaiming, “Did you see that, Mom??!!”

I sat on the end of Aaron’s bed and immediately he threw back his covers.  In another flash, he was right beside me, and there we sat watching the impressive light show, brought to us by God.

And I was ever so thankful for God’s grace in that moment.  Grace from Him to me and Aaron in the form of such bright beauty out that window.

Grace to have my tired mind and body refreshed as I sat there enjoying all the sights and sounds of a good Kansas thunderstorm.

Grace to forget the messy day and to focus on happy Aaron.

Messy grace.

God extends that kind of grace to me every single day.

How can I not also extend it to Aaron in the midst of dirty bedding and glittery lava lamp mess?

Thank you for Your grace in all my messy places, God. 

And thank You for giving me the grace to show Your grace to Aaron.

However, I do not believe I will be buying another glitter lava lamp. 😁😁

The Autism Two-Step

Gary and I are planning a trip to Houston next month.  We’ll stay with our daughter and son-in-law (Kyle and Andrea), and then get to see our other son (Andrew) who will be there for an NHRA race. 

Happy, happy fun times are ahead!  YAY, YAY!!

Wait.  I forgot to mention that we plan to take Aaron. 

Angry, angry times are ahead!  YUCK, YUCK!

That was Aaron speaking.

As many of you know, getting Aaron to travel happily is a stretch.  We want to include him for the obvious reasons, especially the fact that he IS family and should be a part of family times. 

We’ve been making the hard sell and thought we were well on our way to traveling success.  But yesterday morning…

Aaron stood behind me early as I sat at my quiet time desk. 

“I am NOT going to Andrea’s!!” he angrily spoke.

First words out of his mouth did not bode well.

None of my soft words softened him at all. 

I ended up on our patio, coffee in hand, where Aaron soon found me and exposited further on the reasons that he will NOT make this fun, fun trip.

I escaped in the house for a few minutes.  When I looked out at the patio, Aaron was gone.  I didn’t see him anywhere.  Where could he have gone?!

Soon I saw him, across the yard sitting all dejected on our bench.  Sorry for the grainy picture.

He soon moved to the front porch, sadness all over his posture and face. 

When he rejoined me on the patio, he was crying.  When Aaron cries, he is truly and deeply upset. 

“I don’t want to leave this house!” he exclaimed, as if we were forcing him out forever instead of just taking a trip.

But to Aaron, home and the familiarity it brings is of upmost importance to him.  It’s a huge stretch to ask him to go someplace else and just “be happy.”

Aaron reacts to all the stimulation outside of himself in a far greater way than you and I do.  A long trip, another house, an unfamiliar bed, more people around, a different bathroom…just everything about traveling is huge and very uncomfortable to him. 

And if Aaron is uncomfortable, then everyone within range of his voice will be most uncomfortable, too.

It’s so easy to say he should just go and have a good time.

SO, SO hard for Aaron to do that very thing, starting with the “just go.”

Later in the morning, like a light went on, Aaron calmed down and became happy.  It wasn’t because finally, he came to his senses!

It was because he remembered the Indonesian submarine that sank.  Really.  Not that the sinking and all the death makes him happy, but all the facts of that incident have filled his fact-loving cup to the brim.

He talked about the submarine incessantly on Sunday.  He talked about it until the moment he turned his light off that night and went to sleep.  So yesterday morning, when he paused from his travel grief long enough to think of something else, his mind went back to the submarine that had so consumed him yesterday.

Ahhhhh, a subject that pleased him, odd as that sounds! 

Autistic persons are often brought back to their comfort zones by slipping into whatever groove is safe to them and meets their unusual interests.  As strange as it seems to us, Aaron was able to lay aside his angst about our upcoming trip by finding that groove, which on this day was the sunken submarine…

And then Trandoshians…clones…launch codes…Republic Assault Ship…Wookies…

It’s just the most fascinating and often frustrating thing!

Yet Gary and I must lay aside our desire to lecture as we slip with Aaron into his groove, talk about the very unique subjects that permeate his mind, and be ready for the next onslaught of travel anger.

It’s a delicate dance that we know all too well, accompanied by the music of Aaron’s world.  The band isn’t always in tune, at least not to us, but Gary and I had best just dance along and let Aaron lead.

It’s the Texas Two-Step!  Except for us it’s two steps forward…on a good day…and at least one step back.  Often more.

Last night, as Aaron still processed all things travel related, his face lit up.

“MOM!!  Can Kyle tell me all about the submarine?  Because if he can then I’ll go to Houston!”

So Kyle, who has a degree in maritime studies but has never worked on a submarine, has been given an assignment for which to prep before we come.  And his dad, Kent…who served in the Navy on a sub…will no doubt be invaluable.  Andrea said we should just have Kent waiting in the driveway when we pull in.  😊  😊

It’s good that we can all laugh. 

All of us except Aaron, who takes every bit of this very seriously. 

Time for me to get our day going.  Gary and I are taking Aaron to the zoo, which is close and does not require travel but also does not…to my knowledge…have a submarine.  Too bad!

Looks like it will be a beautiful day for a dance. 

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!

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.

 

Where There’s A Will…

Autism 101:  Individuals with autism tend to “…have eccentric preoccupations or odd, intense fixations…  They tend to follow their own inclinations regardless of external demands…” (Karen Williams)

You got that one right, Karen!

In our home, living with Aaron means that Gary and I also live with his fixations.  Sometimes his obsessions are funny.  Sometimes they are maddening.  Sometimes they are exhausting.

But always, Aaron will…to finish the above title…find a way to fulfill his inner demands of how his life is to be lived.

Like his mealtime routine.  Aaron will always, always, always, have multiple utensils or plates or bowls of whatever kind he desires for each meal.  Here was his place setting recently as he ate lunch in the family room.

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We have come to expect this, and we don’t even try to correct him. He will make sure to have the proper number of knives, forks, or spoons for every meal.  I am just very thankful that I have a dishwasher!

How about movie credits?  Gary and I watched a movie yesterday.  Afterwards, we wondered where the movie was filmed.  We watched the credits to find our answer, which happened to be at the very bottom of the huge stream of names and job titles.  And we laughed at ourselves, realizing we had become…for that moment…just like Aaron.

Aaron…who watches movie credits with as much focus as he watches the movie.

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Aaron loves his Star Light that he turns on every night.  It was a Christmas gift from Kyle and Andrea, and he has turned it on every night since then.   Aaron very quickly developed his own rules for his Star Light.  He wants it turned on just as he is getting into bed.

One night, Gary came upstairs shortly before Aaron was actually getting INTO his bed.  Aaron wanted Gary to see his Star Light, so while Gary stood in the doorway, Aaron turned the light on.  Gary oohed and aahed, Aaron was very happy, and then off went the light.  Maybe two minutes later…tops…Aaron turned the light back on because he was now getting INTO bed and it was the REAL time to turn on his Star Light.

Back to Karen Williams’ quote:  Aaron will follow his own inclinations regardless of external demands.

Gary and I are usually the ones making those external demands in many cases.

Let’s talk sweaters…Aaron’s sweaters, to be precise.  Of course.

Aaron LOVES his sweaters.  Certain sweaters are better than others, and he will wear them until they are worn to bits.  He had this old sweater for several years, but it was his very favorite.  He wore it or carried it or had it nearby, inside and outside…always.

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This year, for Christmas, I ordered him two new sweaters.  They are long and flowing, the kind he loves.  And love them he does!

He wears one pretty constantly.  Inside and outside, his sweater is being worn.

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He also wants to wear it to bed, under all his necessary covers…including his new weighted blanket that he loves.  This means that sometimes he gets too hot, but he will rarely agree to sleep without his sweater.  This happened on Saturday night when he talked about being too hot the night before.

Enter the external demands, made by me.  I reminded him that he should remove his sweater before climbing into bed.  He was reluctant, but finally agreed to those external forces trying to rearrange his internal inclinations.

We discussed it on his monitor when I went into my bedroom.  We discussed it as he stood at my closed bathroom door while I tried to brush my teeth.  And he continued to discuss it with Gary after he clomped down two sets of stairs to Gary’s study.

We thought we had won.  We were the new KING AND QUEEN OF EXTERNAL DEMANDS!!!!

Silly us.

Soon Gary came upstairs.  Aaron called out to him from behind his closed bedroom door, wanting one last word with Dad.

And last word it was…for there lay Aaron.

Wearing his sweater.

On TOP of the covers.

We removed our King and Queen crowns as we climbed into our own bed.

Instead, we wore smiles.

Why fight the inevitable, right?

Aaron will always find a way.

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