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!

Did Someone Say, “Time CHANGE?!”

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

Such is our Aaron.

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

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

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

 

Me:  Aaron, do you want to eat lunch?

Aaron:  Yes.

Me:  What do you want to eat?

Aaron:  Can I have pizza?

Me:  Sure.  I’ll fix it now.

Aaron:  I want to eat at 12:00.

Me:  Well, it’s almost 12:00.

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

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

Here’s another familiar scene:

 

Aaron:  Mom, I woke up at 7:58.

Me:  So, you woke up around 8:00?

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

 

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

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

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

Little did I know.

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

IMG_1442(Edited)

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

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

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

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

Silly Mom.

He scooted off the bed and headed for the door.

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

Thump, thump, thump down one set of stairs.

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

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

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

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

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

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

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

Oh.  My.  Word.

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

SO WAS I!!!!!!!!

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

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

I wonder what time it was in Tanzania?

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

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

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

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

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

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

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

Oh, but we weren’t done!

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

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

The EXACT time, for crying out loud!!!

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

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

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

“It says, no wifey,” Aaron told me.

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

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

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

You get it.

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

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

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

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

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

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

Never were truer words spoken!!

He walked back to his bed.

He was soon back at my door.

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

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

Again, he was under his covers.

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

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

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

At least it is in OUR house!!  WHEW!!

clock2

 

 

 

 

 

 

The Colliding of Obsessions

How did such a small thing cause such a huge problem?!

That’s what I was asking myself yesterday as events unfolded at Paradigm, Aaron’s day group.

The small thing was a simple little Subway gift card.  I had used the remaining money on it last Friday when Aaron and I went to get subs for supper.  I had asked Aaron to throw it away in the trash can near the door as we left, but instead he saw the opportunity to keep something interesting.  He thinks gift cards are fun to hold, like a credit card, and to slip in his pocket for safe keeping.  When he asked if he could keep it, I agreed…with the further comment from me that I would one day be throwing it away when I found it laying on the floor of his room.  Experience is a good teacher, after all, and a good reason to hope that Aaron will keep the floor of his room picked up.

Yesterday morning, Aaron once again slipped the little yellow Subway gift card in his pocket as we were getting ready to leave for Paradigm.  Of course, I didn’t see it or know that Aaron had it in his pocket.  Even if I had, I wouldn’t have objected.  But that was yesterday.  Today might be a different story.

You see, Aaron tried to give the card to K, another client at Paradigm.  What I didn’t know, but I do now…as does Aaron…is that K is a hoarder.  Aaron has in the past caught on to the fact that she loves notebooks and papers.  He brought her two notebooks from our house, and wanted to continue until I said no.  I also found out that Aaron was taking paper from the computer printers at Paradigm, and trying to sneak it to K.

One day as we were leaving for Paradigm, Aaron ran back in the house to get something.  I followed and waited in the kitchen.  Soon Aaron rounded the corner, surprised to see me standing there.  Look at what was under his shirt.  BUSTED!!

IMG_0737

Aaron was laughing because he saw the humor in the situation, thankfully.  I had asked him if he was taking K a notebook, and he told me no…but he was laughing because the truth was very obvious!

Back to the Subway card.  The staff at Paradigm saw Aaron give K the card, but they had to take it away because of her hoarding.  Aaron was VERY upset by this!  My cell phone rang as I was on my way to get him at the end of his day.  There was Aaron, trying to explain the situation to me but getting more belligerent with each word.  Barb was there, trying to explain and to calm Aaron, but he would have none of it.  He yelled at Barb, very angrily, but Barb was able to explain things to me as I neared Paradigm.

Aaron came to the van, unhappy and frustrated and embarrassed.  We talked as I drove us home.  We talked after we got home.  We talked during supper.  We talked after supper.  We talked during the evening.  We talked out in the yard with our neighbors.  We talked on the way to bed.  We talked after Aaron was in bed.  We talked first thing this morning.  We talked during breakfast.  We talked while I was fixing my hair.

You get the idea, right?  Aaron must talk and talk and talk and talk as part of his method of processing these situations.

But here’s the deal…the thing that strikes me so much about all of this.

So many of the clients at Aaron’s special needs day group have obsessions of varying sorts.  An obsession is a “compelling motivation.”  And trust me, these special adults are extremely compelled in their motivations to satisfy their various obsessions.

One of Aaron’s obsessions is to give things away.  Now, that sounds very sweet, and often it is.  But he will give away his food.  He will give away his money.  And he will give away anything else he has that he thinks might make someone happy.

What he doesn’t understand is that often he is also feeding another person’s obsession…an obsession that the staff is attempting to help the person control.

Years ago, Aaron met Rosa at Paradigm.  They became special friends.  Aaron found out that Rosa liked crayons, so he would take her a few crayons almost every day.  I didn’t realize that Rosa didn’t just like crayons…she was very obsessed with crayons.  Too many crayons pushed her over the edge emotionally.  I learned this after talking to Rosa’s mother.  She and I are good friends today, and I was very thankful that she let me know that Aaron’s generosity was actually a detriment to Rosa.

Over the years, we have seen this pattern repeated over and over with Aaron’s various friends.  One wants his food.  Another wants his money.  One likes stuffed animals.  On and on.

It’s what I call the colliding of obsessions.  Aaron will give ANYTHING away, so if he finds that someone likes something, he will do anything within his power to see that they get it.  He is feeding his obsession while feeding theirs.

Few of these special friends of Aaron’s can fully understand the situation in which they find themselves.  Reasoning through this with Aaron was extremely difficult yesterday.  He blamed Barb.  He was angry with me, and with Gary.  He firmly informed us that he was NOT going to Houston with us to see Andrea and Kyle over the 4th.

And he obstinately folded his arms while telling us that he didn’t care!

But he does care.  He just can’t rationalize this like we can.  And neither can his special friends at Paradigm who struggle with their obsessions.  It’s a volatile mix!

Kudos to the staff at Paradigm, and at so many other special needs groups, for all they must handle when it comes to these situations.  Most are like Aaron and can’t connect the dots in order to make a complete picture.  There is anger and yelling from the clients while the staff must remain calm and focused.

Every.  Single.  Day.  The staff diffuses these situations every day.  Just this morning Barb told me that she had already taken a whole sack of used QT coffee cups and empty containers of disinfectant wipes away from K!  And I’m sure K was not one bit happy.

I kept Aaron home today to allow him more time to decompress, and to decide that Barb really isn’t the enemy here.  He loves Barb – she’s his second mother – and tomorrow he’ll probably be fine.  I’ve had time to further explain K to Aaron.

As we talked, Aaron told me that K saw the card and wanted it.  I don’t know if that’s totally true, but he also said that she told him it was her birthday and he should give her the card.  His statement to me, though, was so telling…said in Aaron’s very special way.

“Mom,” he said, “I fell into her idea.”

I chuckle at how he words things while also being amazed at his insights.

Oh, if only he would remember not to fall into other’s ideas…and into many of his OWN!!

And if he would also remember what I tell him on many days.  I tell him not to give away his money, but to give away kind words and friendship to others.  No one can get enough of those!

That’s an idea worth falling into!

 

 

 

 

 

 

Four or Forty Tops?

Individuals with Asperger’s Syndrome often become fixated on certain areas of interest.  This is also called “perseverating.”  When Aaron demonstrates this behavior, we call it:  “Oh good grief!  What’s Aaron stuck on now?!”

On our recent trip back east, he took his CD player with him along with some favorite CDs as well as some CDs he hadn’t listened to often or ever.  He loves oldies music and so when he started listening to The Four Tops CD he was captivated.  Over and over he played certain songs, and over and over he stared at their picture inside the front cover.  I had to look at it; Gary had to look at it – and we had to listen to Aaron talk and talk about The Four Tops.  At one point he said, “I love The Forty Tops!”  I told him that if they were The Forty Tops then they would be a choir.  He thought this was “quite funny,” as he says.

 

He observed that The Four Tops wear “shiny church shoes” and because of the tapping on one of the songs he’s just sure that they are tap dancing.  Somehow I can’t see The Four Tops tap dancing, but I could be wrong.  Bing Crosby, maybe, but The Four Tops?  Anyway, he wanted to know their names and so I looked that up on my tablet as we drove.  Then he wanted me to write their names beside their picture that he stared at on the inside cover, which required me to log onto Wikipedia and compare faces with names, etc.  I felt like I was doing a research paper!  Aaron was becoming happier by the minute as he gathered more info – or as MOM gathered more info!

In a moment of brilliance, I suggested that we check out YouTube to see some Four Tops videos.  I did that, and he was enthralled, but the video kept stopping and Aaron kept getting disappointed – which can lead to Aaron becoming frustrated – which we don’t want!  So I rescued my tablet and told him he could log onto his computer at home for the YouTube segment of our Four Tops education.  And true to form, as soon as we were home Aaron was on YouTube watching the singing and dancing Four Tops.  At supper that night, he educated Andrea on all he had learned about The Four Tops, whether she wanted to hear it or not.  She was shown the picture with the names printed, heard about their shiny shoes with which they certainly tap dance, and was told that The Four Tops twirl when they dance.

And Aaron wonders why The Four Tops sing about girls all the time, and things like love, and he cracks up when they sing about staring at the girl’s picture and kissing it a thousand times – or something like that.  In his literal mind, this is beyond comprehension.  And again, why do these guys keep singing about girls and love anyway?!  So this morning as we drove to his group, he did NOT forget to bring The Four Tops CD to the van.  When he heard them sing the phrase “I get all choked up,” he declared, “Well, that’s weird!  Why are they doing that?”  I asked him to tell me what he thinks “all choked up” means and he said, “You know – that coughing thing!!”  Whereupon I nearly became “all choked up” as I tried not to laugh!  And I will try very hard not to “choke HIM up” when he returns home today and we have to talk about all of this all over again!!