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.

A Donut With a Side of Autism

Yesterday our friend, Karlea, tagged me in a FB post from our nearby donut shop.  Paradise Donuts was reminding all their customers that it was National Donut Day, and that they were giving everyone a FREE donut.  Karlea just knew that Aaron would love stopping in for a donut.  Soon I was explaining National Donut Day to Aaron, asking him if he wanted to stop on our way to his day group for a donut.  YAY!!

NOT yay.

I must backtrack a bit to explain.  Nearly every day at Paradigm (Aaron’s day group), Antoine or another staff will take Aaron to the nearby QuikTrip.  I send money with Aaron, and he is able to buy something to eat and drink.  He absolutely loves this small outing.  His QuikTrip visit is ingrained into his routine now.

Back to yesterday.

Me:  Aaron, today is National Donut Day.  Paradise Donuts is giving away a free donut to everyone that comes in.  Would you like to stop there on our way to Paradigm?  We can get a free donut!

Aaron:  No.

Me:  What?  You don’t want a donut?  A FREE donut?!

Aaron (a little more emphatically):  No!

Me:  Why don’t you want a donut?

Aaron:  I want to go to QuikTrip.

Me:  I’m still sending money and you can still go to QuikTrip.

Aaron:  I like Antoine taking me to QuikTrip for food.

Me:  Antoine will still take you to QuikTrip for food. 

Aaron:  I like QuikTrip food, NOT a donut!

Me:  But you like donuts.  Just a few days ago you were happy that we stopped to get donuts.

Aaron:  I like Antoine taking me to QuikTrip more than you taking me for a donut!

These conversations usually lead to personal insults as Aaron attempts to drive home the fact that on Paradigm days…almost always…QuikTrip is what he does and where he goes for food and fun. 

Nothing will deter him from his routine. 

Not even a donut.

Not with Mom.

I dropped it like a hot donut and took Aaron to Paradigm.

Later, when I picked Aaron up, he told me about his day.

Aaron:  Mom, they had donuts at Paradigm for donut day.

Me:  Oh, that’s fun!  Did you eat one?

Aaron:  No.

Me:  You didn’t eat a donut?!

Aaron:  No.

Me:  Why not?!

Aaron:  I didn’t want one.  I wanted to go to QuikTrip.

I decided to just drop it.  Aaron didn’t see me shaking my head.

After a few moments of silence:

Aaron:  Antoine took me to QuikTrip!

Me:  Good!  What did you buy today?

Aaron:  I bought two donuts.

There are not enough letter combinations in the English alphabet for me to form enough words to voice what I was thinking and feeling and wanting to say at that moment.

Just as well.

Laughter is far better than lectures during these times.

BUT I WANT A DONUT!!!!!

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.   😊

Tearing Our House Down

We had a very busy last few weeks of 2021, and an exciting beginning of 2022.

After several months of planning with our contractor and prepping the house…and ourselves…our big main level renovation is well underway.  We just finished up week number three!

Aaron is not a fan of upheaval of any kind.  I would say that having our kitchen, family room, living room, and dining room torn apart at the same time qualifies as upheaval, right?

Two days before the work started, there stood Aaron staring at a wall in our kitchen.  I just stared at him, waiting for him to tell me what he was doing. 

Aaron:  Look!  There’s a crack in this wall.

Me:  Well, I think it’s just the paint but anyway, this wall will be coming down soon.  We’re going to see some very interesting things in the next few weeks.

Aaron:  Not me.

Me:  What do you mean?

Aaron:  I don’t like this. 

Me:  Why not?

Aaron:  Because Luke might turn off the electricity while I’m on my computer!

Luke, whom we’ve known since he was a teenager, has done our other remodeling.  He finished our entire upstairs last year.  So he knows Aaron well and is as prepared as one can be for the comments that Aaron will inevitably make. 

Gary and I decided to stay in the house during this renovation.  We put together a makeshift kitchen in one of our upstairs bedrooms.  I told a friend that if I couldn’t cook with all the gadgets I have then I’m pretty pathetic.  😊

Three days into our first week, this friend laughingly said she would like to know what I had been cooking that week.  Here is my answer:

Monday – leftovers.  I felt invincible

Tuesday – I decided to unbox my new air fryer and learn how to use it because I thought I needed some extra stress in my life.  I cooked Aaron’s brats in it.  I was fixing Gary and I some precooked Angus patties in the microwave and then some steamed cauliflower in the microwave.  And salad for all of us.

The microwave shut off because it won’t work at the same time the air fryer is on.  Too much electricity being used in our upstairs at the same time.  😝😝

I had enough Olive Garden dressing in our little frig we bought for our makeshift kitchen, but I was determined to find the extra bottle that I knew was in one of these food boxes, but I could NOT find it and I was so FRUSTRATED by that point!  Aaron loves that dressing!  I did not want to run out!  Then it became an issue over me saying to myself, I WILL find that dressing!! 

I found it today in the box with the baggies and foil.  😂😂

And the steamed cauliflower last night was slightly – largely – on the crunchy side.  We sounded like we were eating Doritos.

Tonight:  I wisely used my well-known crock pot and rice cooker to make Taco Chicken Bowls.  Took me awhile to find the rice.  WHERE IS THAT TUPPERWARE CONTAINER OF RICE???  I JUST saw it yesterday!!!

I found it, finally, under a bunch of cans.

Thursday:  We are eating at Outback.  😅😅

But things got much better after that first week.  We are truly thankful to be at home and so blessed that we have plenty of room upstairs, and then a whole downstairs where Aaron and I can watch our shows at night while Gary reads. 

Aaron still wishes that Luke would just stop all this nonsense.  He has told Luke multiple times that he wishes he would quit tearing our house down!  And yesterday, with two new workers here, Aaron walked up to them and nicely said, “I wish you would go home and quit tearing our house down.” 

I told them that Aaron was our welcoming committee and to just carry on.  😊

It is not a small project!

Aaron wishes it was small…and fast.

One night, before bed:

Aaron:  Mom, is Luke almost done?

Me:  Oh no, Aaron.  This remodel will take awhile (without defining “awhile.”)

Aaron:  Well, I wish it was done right away ALL the way because I don’t like that sound they make!!    😂😂

Aaron really does have a lot to get used to, like finding an empty can of black beans on the bathroom counter.  I needed to drain them in our bathroom sink as I was putting supper in the crock-pot in our Makeshift Bedroom Kitchen.

Aaron walked in the bathroom and immediately spied the empty can of black beans on the counter.

Aaron:  MOM!!  Why do you have black beans in the bathroom?!

Me:  I had to drain them, so I used my bathroom sink.

Aaron:  Oh.  I thought maybe you were using them on your hair!!

Hmmmm…he may be on to something there.  On many days I would try ANYTHING to help my hair!! 

Black Bean Bouffant!!   😂😂

I’ll let you know if it works – may even post some pictures!

But for now, here a few more shots of our work-in-progress.

And, as you can see, Luke and his team really are making progress! 

If we could only convince Aaron of that. 🙂

Our Texas Trip – Part 1

I heard an old George Strait song yesterday that could have been Aaron’s theme song leading up to our trip to Texas.  The song is titled “I Hate Everything.”  And oh boy, did Aaron ever!

The night before we left saw us reeling under all Aaron’s verbal blows.  He was livid at having to go with us, far preferring that we hire a caregiver to watch him while Gary and I went alone.  We were definitely with him on that as the evening wore on and we were worn out. 

The next morning was no better.  Aaron didn’t like us, the trip, the car, the snacks we took, Texas, Andrea, Kyle, their dogs…nothing.  The only thing he liked was his idea of staying home and that was NOT going to happen, so we were stuck with lots of “not likes” and plenty of anger. 

“I hate this vacation!!” he declared as we drove down the interstate. 

Aaron does not enjoy leaving his room, his house, his routine, his bed…his normal.  These things are such a part of what makes Aaron function in his normal that the process of uprooting, even for just a week, is nearly more than he can bear. 

Aaron accepted his inevitable doom as we drove farther away from normal.  Gary and I left him to his games, his music, and his movies as we quietly recovered.  How draining it all was!  I texted and messaged friends and family to please pray.  What a comfort it was to know that we were being brought before the Lord!  I know that many of my fellow bloggers were also praying, and I thank you so much for that. 

We stopped a few hours down the road at our favorite Oklahoma City rest area.  And there Aaron found a cute little stuffed owl that we let him buy.  He rubbed his hands together in his happy way as we paid, and Gary and I felt like doing the same as we saw a lifting of Aaron’s anger.  A chocolate milkshake and onion rings from the nearby Sonic gave him further reason to smile. 

It’s a very long drive to Houston, and then even farther to Andrea and Kyle’s house in League City.  Aaron had lots of time to think about the upcoming week of change and uncertainty that he felt waited for him there.  We saw occasional outbursts from him about how he still didn’t like this vacation. 

Finally, there it was…the Houston skyline.

And not too long after, we were pulling into Kyle and Andrea’s driveway.  We could hear their 3 adorable dogs barking as we got out of the car.  Soon we were sharing hugs and doggie pats, settling our things in our rooms, and sitting down to the pizza that was waiting for us.

What a relief it was to see that Aaron was relaxed!  He had immediately given the dogs their treats and toys we had brought to them.  As we sat around the table, I was so touched to see the total attention that Kyle and Andrea paid to Aaron as he talked non-stop. 

That attention to whatever Aaron is saying is one of his major love languages.  The things he talks about can be mind-numbing to us but not to him.  Listening, commenting, answering his many questions…that means more to Aaron than we often stop to recognize.  But Kyle and Andrea know Aaron, and they love him, and they showed it by listening with great interest to his talk of…whatever it was he was saying.  😊

Later, as we were getting ready for bed, Aaron had me fill his water bottle that he keeps by his bed to drink while he reads a book before he goes to sleep.  Got that?  Because that little fact is very important.

I gave Aaron his pills while he was getting in bed.  Not having any other water, I told Aaron to just drink some of the water from that water bottle. 

“No!” Aaron told me.  “I can’t drink that water to take my pills.  That’s the water I drink while I’m reading in bed!”

I was so tired.  I sighed, and Aaron heard me.

“You don’t understand,” he said, with some anger returning.  “No one understands me!”

It was like some of that water splashed me in the face as I was hit with a fresh look into Aaron’s heart.  Try as we might, sometimes it truly is very hard to understand Aaron. 

Or maybe we understand on paper, when things are calm, but in the middle of the moment when we’re stressed it can be very hard to slow down, take a breath, step back, and see the world through Aaron’s eyes.  Feel it with his senses. 

This whole trip was like going to Mars for him in many ways. 

“Please, Mom,” it was like he was saying.  “Don’t also make me use my bedtime water bottle for taking my pills.  Don’t you understand?!”

My rising frustration was immediately replaced with empathy for this son of ours who didn’t ever ask to have autism.  But he does ask that we try to understand him as he lives with the rigidity that autism causes. 

Just understand.

Push aside my exhaustion, my frustration, my expectations – and simply give him a separate glass of water for pill taking.

What a gift that was to Aaron!

And to me as I once again saw him relax.  I knew that I, too, had spoken Aaron’s love language.

I have so much to tell you about our time in Texas.  It was the best trip ever for all of us!  I’ll share more later, hopefully soon, in my upcoming blogs.

Bless all of you for reading and for caring!  Good night and sweet dreams.

What A Mess!

Aaron and I were in the middle of watching an episode of The Waltons last night when he pushed the pause button and got up from his chair.  He went to the kitchen and soon returned carrying a huge bag of popcorn.  We’re talking huge in the sense of Sam’s huge.  All I envisioned was Aaron putting his hand into our community bag of popcorn, grabbing a few pieces, and then putting his hand up to and partially into his mouth. 

Germs!!  My mind could see all those little, microscopic germs being transferred into our huge bag of popcorn.  YUCK!

I stopped Aaron in his tracks, told him to pour some popcorn into a bowl, and over his grumbling he went back to the kitchen to do what I had said.  It wasn’t long, though, before I heard this:

“Mom, can you come here?  I need some help.”

Did he ever!  When I walked into the kitchen, there on the floor was a big mess.  Aaron had spilled lots of popcorn on the floor.  Mom to the rescue!  Aaron got the broom, and we were soon able to clean up the mess.

All around me today I see messes.  So much upheaval is in our country and the world today.  People are suffering and worried and angry.  I wish the messes we see were as easy to clean up as Aaron’s popcorn on the floor, but we all know that’s not the case. 

I read and studied Psalm 22 this morning.  I agree with Dale Davis, who says that David is speaking of his own suffering in this Psalm and yet goes “beyond his suffering and into the suffering of Another.”  David’s suffering also spoke of the suffering of Jesus still to come.

Certainly, the suffering of Christ for us is the greatest gift ever given.  Yet it’s also  in David’s earthly anguish that you and I as followers of Christ can find great comfort as we navigate this dangerous world in which we now live.

I, like David, can look behind me in my years of following the Lord and I can see His faithfulness to me.  I have no reason to doubt that He will remain faithful in the days yet ahead.

I look around me and I feel the chilling wind of change…change that is not good for believers.  I see how the world’s perception of Christians today has become warped…how we appear by liberal definition to be bigots and racists and haters.  How if we don’t jump on board with radical agendas and unbiblical lifestyles then we are not welcome to live in their world. 

The description that David gives of his persecutors sounds eerily similar to some of our accusers that I see on the news today.  He pictures his haters as bulls who encircle him and open their mouths wide at him; as lions who are tearing and roaring; mad wild dogs who have closed in on him; evildoers who surround him.

Remember the looks on the faces of the rioters when they hurled insults at those who attended White House events this past summer?  We’ve seen and heard that same spewed hatred over and over, aimed at pro-lifers and conservatives and Christians in various settings. 

I never thought I’d see the day when moral values are demeaned and blatant ungodliness is held up as the national standard.

But it is here, and it is now.

What jumped off the page to me this morning as I read Psalm 22 is this:

“But You, O Lord, be not far off; O You, my help, hasten to my assistance.  Deliver my soul from the sword, my only life from the power of the dog.  Save me from the lion’s mouth; FROM THE HORNS OF THE WILD OXEN YOU ANSWER ME.”   (Psalm 22:19-21)

David was already in the middle of great trouble.  The picture is of him being actively mauled.  But in the midst of being attacked, David asserted that God answered Him.

God doesn’t always remove my attackers, in whatever form they come, but He DOES hear me and answer me.

David learned that he may have felt forsaken but in reality, he was not.  God was there in every scary moment. 

And so He is with us and He WILL continue to be with us.  He will surround us while we figure out how to function as the minority in our culture today.  He will answer us from the horns of the wild oxen!

David knew that though he felt forsaken at times, God was there with him.  And God is with us as well. 

“For He has not despised and He has not detested the affliction of the afflicted, nor has He hidden His face from him, but when he cried to Him, He heard.”   (Psalm 22:24)

God knows.  God hears. 

I will praise Him and I will share Him with others. 

I will stand strong for truth.

And some day, in His timing, He will clean up all this mess. 

So Many Changes!

Hasn’t this been a year of change?  My goodness, all of us are suffering from whiplash when we think of how quickly we’ve been hit with change across the board, in every area of our lives. 

When I fine-tune my vision and focus on our little family in our own little world, I see how all these changes…and other more personal ones…have affected us a lot.  Gary and I don’t just have ourselves to consider, of course.  For us as parents, certainly, we always look at how change is affecting our children.  It doesn’t matter that Andrea and Kyle, and Andrew, all live far away.  We still ponder and pray every day about their lives and what impacts them.

Here at home, though, we are the most affected by how changes in life hit Aaron.  Trust me, the word “hit” is appropriate when speaking of Aaron and change.  Sometimes Gary and I don’t quite know what hit us when change hits Aaron.

Aaron has handled COVID issues very well, for the most part.  He’s still thoroughly sick of it, pardon the pun.  Yet he wears his mask well in public and has adjusted to this new way of living much better than some I know.  I’m very proud of him for that.

His day group opened the first part of July and things have gone well until recently, when several clients tested positive for the virus.  The day center has been closed now for over two weeks.  Aaron doesn’t mind that one bit because he loves staying home.  Our quarantine is over, and he and we are fine, but the center is still closed.

We’ve still been able to enjoy walks outside, exploring some new areas and appreciating the familiar ones.

Petting Moe, our neighbor’s cat:

And loving some time on our friend’s farm:

Besides all the COVID stuff going on, we’ve also had personal changes in our life.  Gary retired this past summer and we wondered how that would affect Aaron, but he’s adjusted beautifully and really enjoys having Gary home all the time.  I mean, now Aaron has another set of ears to listen to all his talk…and what’s not to like about that?!

We’ve had more remodeling done, including…and MOST importantly…Aaron’s room.  Aaron struggled with moving into his brother’s old bedroom.  He oversaw Gary and I as we moved his desk and computer to its new and temporary location, complaining like an old man about it…hovering and huffing a LOT!  He soon realized that his desk chair didn’t move so well on the new hard floor with no carpet, so he bemoaned the fact that his carpet was soon to be a thing of the past.  He tried to urge Luke and Noah, our remodeling team, to NOT take out his carpet but to no avail.  He also spoke to them about all the noise they were making and to please NOT turn off the electricity again!! 

He is now back in his own bedroom, with the hard floor and with his furniture rearranged.  Hey, if we’re pushing Aaron to adjust why not try even MORE new things, right?!  He’s just happy to be in his own bed again and in his own room, so this further stretch for him is being tolerated well.

Success!

Except for our latest change.  Gary and I are taking Aaron with us on a trip back east.  We’re going to Gary’s hometown in the Smoky Mountains of North Carolina to help his sister after her knee replacement surgery.  AND…we’re taking Aaron with us.

Aaron would rather stay home, in his own house and his own room, even though we did put that hard floor in there!

Aaron loves Aunt Sandra and will talk her ear off on the phone, but Aaron loves being home even more.  It’s been a push to get him to settle down about this grand plan of traveling again.  Gary and I have had to be firm.  I’ve told Sandra to put on her thick skin. 

Aaron wanted to talk to Barb, Paradigm manager and Aaron’s second mom, about all this trip business.  She facetimed with him yesterday and it was so sweet.  She helped tremendously!  We may be doing that again from North Carolina!

We leave in the morning.  Our vehicle will be full of Aaron’s CD’s, DVD’s, blanket, pillow, books, food, drinks, his computer, Nintendo and games, and his stuffed snake. 

He is comforted in knowing that tomorrow night we will stop to stay in a hotel and best of all, we will eat out in a real restaurant. 

Gary and I would be comforted in knowing that as you think of us, you would pray for safety…for Sandra’s knee surgery to go well…and for Aaron to have a great time and to be happy. 

We hope to see lots of happy smiles just like this!  Thank you for praying!

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!

Stay-At-Home With Aaron

This Friday will mark one month that I have kept Aaron home due to COVID-19.  To borrow Aaron’s words while I was still able to take him shopping:  “You’re getting that because of the Coronavirus, aren’t you?”  Said with frustration, I might add, as he has seen this virus as a great deal of unnecessary drama in his life.  I think many are feeling that way right now!

The other night he got to video message with two of his friends from his day group.  It made him realize how much he misses them and his other friends.  I was glad to hear him say that, for getting Aaron to re-enter his former routine may take some doing.

He does love being at home, although some days he is at loose ends.  When this first started, I thought of something to do every day that would keep him occupied and happy.  Watching some shows during the day, for instance, was a treat for him since it’s something we never do.  So many activities we would normally do – eating out, movies, the zoo, shopping – are off limits now, so giving happy moments every day was…and is…vital to Aaron and to ME.

However, Aaron has now become a professional Event Coordinator.  😊  He finds it quite fun to plan our days!  But today, after going through the car wash and grabbing a to-go pizza for lunch, I had to say no to driving to a nearby lake.  My days are still full of necessary home life, so when added to these fun activities with Aaron, I’m finding myself getting behind.  I’m realizing that these are the days I used to wish I had…days at home when I could get so much done…but the “getting so much done” just isn’t happening!

One thing I really wanted to do today…and have wanted to do for many days…is to give a quick update on my stay-at-home life with Aaron.  What have we been doing to occupy our time?  Let’s see:

 

Playing Go Fish:

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Taking drives and seeing fun wildlife like these turkeys:

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Cutting coupons:

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Watching favorite programs:

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Dairy Queen Blizzards at Lake Afton:

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Donuts at Lake Afton (this pattern must stop!):

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Walks at Swanson Park:

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Practicing with selfies:

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Cooking:

 

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Getting a new PC game:

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Eating by lantern when the electricity went out:

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Pulling Weeds:

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And relaxing as only Aaron does, crunching mulch:

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We’ve had some moments, for sure, but I can honestly say that Aaron has mostly handled our stay-at-home much better than we thought he would.  I know that’s because of prayer, and I am so thankful for God’s mercies and strength and wisdom.

We are truly blessed to have so many options of places to go and activities to do that keep us safely distanced from others, yet able to leave the house and get some fresh air and sunshine, hear the birds, and enjoy this new pause in our lives.

How are each of you and your families doing?  I pray that God is strengthening you and that you are being encouraged in unexpected ways during these days.

Let’s keep praying for one another, and for our great country.  May God keep us safe and wise, and may we continue loving Him and each other in these unprecedented times.

 

Caught Up In Crazy

I very innocently planned a grocery trip today to Aldi.  I often go to Aldi on Friday mornings.  Not a big deal…so I thought.

Also, not a big deal to take Aaron with me…so I thought.

I wasn’t surprised that the parking lot was rather full.  I WAS surprised when Aaron and I headed for the carts to hear a woman call out to me, telling me that Aldi wasn’t opening until 12:00.  Somehow, I missed that memo.

Thankfully, Aaron and I only had to sit in the van for less than 10 minutes.  Out we hopped, again, grabbed our cart and had to walk to the back of a long line.  Never…not Thanksgiving…not Christmas…not pre-blizzard…have I seen a line waiting to get into Aldi.

The lady behind me mentioned that this was crazy.  Yes, it was crazy.  So was the line all the way up the first aisle headed for the produce, and the line waiting for eggs, and another for dairy products.  All through the store, in nearly every aisle, we were bumper to bumper carts and shoppers.

So much for social distancing.

I saw some things.

I saw concerned faces.

I saw tired children.

I saw long lists in shopper’s hands.

I saw smiles, too.

I saw kindness from many of the harried people there.

I saw a very elderly and frail woman with beautiful white hair sitting on the counter where her caregiver packed their groceries…and she was sound asleep, her head bowed, seemingly oblivious to the noise around her.

And I saw Aaron as we stood in the check-out line, his arms hanging down and his hands folded together while he stared down at the end cap display beside us.

He was somber and quiet, very uncharacteristic of him when shopping.  Usually he rubs his hands together happily as he stands in line talking about a game or a movie or what he wants to eat for supper or any number of other things.  Usually I must remind him to talk softly.

But not today.

Today, Aaron saw and felt the crazy all around him.  I was calm all through the store, talking to him and to others, trying to maintain a sense of normal.

That’s because I know how necessary normal is to Aaron.

But today was anything BUT normal, and Aaron was not to be fooled.

I’ve written about how Aaron is very tired of this Coronavirus…how done he is with store closings and restaurant closings and crowds and shortages.

I really didn’t expect Aldi to be part of the crazy today.  I didn’t expect our trip there to add to Aaron’s angst.

Yet there we were, sucked into the crazy while not wanting to contribute to it.  I was just there to get normal groceries.  But the crowds…the lines…the empty shelves…the waiting…the jostling – all made Aaron most unsettled.

“Mom,” he said.  “You’re just here because of the crazy Coronavirus!”

I tried to assure him that I was there because of needing normal groceries.  But Aaron wasn’t buying it.

All through the store…thankfully in a quiet voice…Aaron told me over and over that I was a part of this crazy because of the Coronavirus.

“You’re just buying that because of Coronavirus,” he muttered as I bent over the sandwich meat.

“You just want that because of the Coronavirus,” he said again as I added coffee to the cart.

Seeing him in the check-out line, so still and serious, made me very sad.  All the times I’ve wanted him to be quiet and now he was…but for a reason that yanked at my heart.  He was most uncomfortable…most uneasy…most worried.

This whole scenario of our current lives is new to me…new to all of us.  Watching Aaron’s manner and seeing his worried face was a real insight into how this strange time is new to him as well and is affecting him.

Normal is gone for now, and for who knows how long.  So, for many of us with special children…children who respond strongly to their environments…this may be an extra stressful time.

Let’s encourage each other and pray for one another.

And if you’re out and about in the crazy, and you see a mom with a special-needs child, give her an extra big smile, would you?

 

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