Category: Change

The Signature

It was last December 13, a Sunday afternoon, when I heard my text notification buzz.  Reaching for my phone, I saw that the message was from our friend Dona in Texas.  My first thought was that maybe she and her husband Steve were coming up our way and wanted to stop in for a visit.  But I gasped when I read her text.  Then I read it again to be sure that I had understood it correctly while hurrying downstairs to tell Gary the news. 

“Please pray,” Dona texted.  “Steve has had a major stroke and is being airlifted to a hospital in Dallas.” 

How could this possibly be happening?  Steve is our age, healthy and very active.  He had recently completed his Master’s; taught in the aviation department at LeTourneau University; and was a Colonel in the Texas Civil Air Patrol. 

All that day, Gary and I prayed as we waited for more news.  And my mind went back over the years of our friendship.  Dona and I went to college together at Piedmont Bible College, where Gary later joined our ranks as a student and Steve came as an aviation instructor at the Missionary Aviation Institute there.  Steve and Dona fell in love at the same time that Gary and I were doing the same.  And on May 26, 1979, Gary and I were married……and so were Steve and Dona.  We even married at exactly the same time in the evening, though in different towns.

Our friendship grew during the time that Gary completed college, Steve continued to instruct missionary pilots, and Dona and I worked.  Life was simple and sweet.  One day Steve told Gary that he wanted to teach missionary pilots how to fly helicopters, but one thing needed to happen first……..Steve needed to learn how to fly them.  Steve decided to try to join the army, learn to fly the choppers, and then go back to training missionary pilots when his time was up.  Gary had been in the army during Vietnam, so Steve asked Gary to go with him to the recruiter’s office in order to keep an ear out for anything that wasn’t quite kosher. 

Gary and Steve went to several appointments together.  Some people would say as luck would have it, but the four of us knew that it was as the Lord would have it that Steve did not go into the military, but Gary did.  Steve and Dona ended up living in Tennessee, where Steve was an air traffic controller.  Gary and I lived in six different places during his time as a military pilot. 

Steve and Dona remained dear friends over those years.  We visited each other when we could, with Steve and Dona coming to see us at several places where we lived, including here in Wichita.  They moved to Texas several years ago, and Steve remained active in aviation both as an ATC instructor at LeTourneau University, and as a commander and pilot in the Civil Air Patrol. 

Then came December 13.  It was a cold, rainy Sunday in Texas.  Dona had stayed home from church with a cold.  And Steve was found after church, lying beside his vehicle in the rain, mostly unresponsive.  A major stroke.  Airlifted to Dallas, where he spent weeks in the hospital and in a rehab hospital.  Home now, facing continued extensive rehab.  God has been so gracious to Steve.  Much of his function has returned, though he is still profoundly affected by the stroke. 

His life has dramatically changed, as has Dona’s, in ways that most of us never consider until we are faced with the reality of something like this……something completely life changing.  Dona writes about their life and about their Lord, and sends it out as emails.  She’s written these devotional and inspirational pieces for years.  What a treasure they are!  And especially now, as she has allowed us to walk with her as she walks with Steve on this path full of twists and turns.  She and Steve have always been examples to us of steadfast faith, but never more so than now, when their faith has been tested as never before.

In November of last year, Steve and Dona sent Aaron a birthday card.  There at the bottom was their signature.  Steve signed his name.  Dona signed her name.  That’s how they always did it.

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Then in April another card came from Steve and Dona.  My dear friend, Atha, had died and I was still reeling from her unexpected death.  Dona knew how my heart was hurting, so she pushed aside her own pain and she sat down to write some very encouraging words to me and Gary.  And then as she ended her note, there it was.  The signatures.  Steve…..and Dona.  But look at Steve’s, written with his left hand when he is right handed……and written after having to learn how to write again. 

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I burst into tears when I saw it.  Dona’s words were uplifting and so sweet, but Steve’s signature is what really got me, because it showed volumes to me of where Steve was now.  What a difference from November to April!  What life changes he is having to adjust to! 

And so is Dona, who is with him every step of the way.  How her life has changed!  Steve walked out the door that Sunday morning, and their world as they knew it collapsed.  But I know they don’t really think of it that way.  They see God’s hand in it all……they trust Him completely……and they are putting into practice the rock solid faith that they have cultivated in our loving God all these years.  But it’s still hard.  It’s not without frustrations and fears and tears.

Back on May 26, 1979, Steve and Dona promised to be faithful to each other, too….for better or worse, richer or poorer, and in sickness or health.  So did Gary and I.  Steve and Dona’s promise has been put to the test, and they are passing…..with God’s grace…..with flying colors. 

Gary and I are very, very thankful that we have another year to celebrate our joint wedding anniversaries.  We are very, very thankful for the enduring friendship that we have shared with these dear friends.  We are very, very thankful for their example to us of steadfast love in the life changing hard times. 

And I’m very, very thankful for Steve’s signature that is so telling on many levels.  It tells of sadness, of strength, of progress, and of grace. 

Which means that Steve and Dona’s life really has God’s signature all over it. 

Happy Number 37, Steve and Dona!  Here’s to many more!

 

Stuff It!

Several years ago I wrote this short piece about Aaron and the covers on his bed.

 

Helping Aaron change his sheets today reminded me once again of another characteristic of Aspergers – an insistence on sameness.  Aaron wants every wrinkle pulled out of his covers when we’re putting them on his bed, and there is one smaller blanket that must be centered.  Not only that, but he likes several blankets, in addition to his sheet, and they must be put on his bed in a particular order. 

 I remember once, several years ago, that as I helped him change his sheets I decided that there was a better order for the blankets to be put on the bed.  My order made it easier to tuck the sheet and blankets under the mattress.  So I matter-of-factly showed him my plan as I changed up his plan for the Order of the Covers.  He said he didn’t like it.  So very patiently I showed him again that my Order of the Covers was a good Order of the Covers.  The same covers were included as always but in a different order.  Aaron stood there pondering and the only word that he heard, as I would soon discover, was the word “different.”  Not the word “better” or the word “good,” but only the word “different” – which is not a favorite word of Aaron’s.  He complied with my plan at that time, and so we completed the bed making with the new Order of the Covers.  I trotted happily on my way without giving that exchange a further thought. 

 Until the next morning.  Aaron usually makes his bed before leaving the house, but something that next morning didn’t seem right about his bed and so I took a look.  AH HAH!!  After we had gone to bed the night before, Aaron got up and changed the Order of the Covers back to HIS Order of the Covers.  “Well, well, well,” I thought.  Two can play this game!  And I changed the Order of the Covers back to MY Order of the Covers.  HaHa!  That’ll show him!  Neither of us said a word that night before bed, but don’t you know that when I got up the next morning he had changed the Order of the Covers back to HIS Order of the Covers again?!  We went back and forth then for several days in our silent battle over the Order of the Covers.  Finally, though, I faced reality.  Did I really want to spend the rest of my life remaking his bed every morning?  Was this issue really worth that?  Nah, I didn’t think it was. 

 I conceded.  He won the Battle of the Order of the Covers.  Good grief, I may as well admit it.  He won the whole war! 

 

Well, as of last August Aaron has a newly painted room along with a new bedspread, new valence on his windows, new pictures on his walls….new, new, new!  I wrote about his insistence on keeping his books on the floor beside his bed, despite the NEW lined basket that I have in his night stand for just that purpose.  Aaron doesn’t really care about new lined baskets nearly as much as he cares about his routine of keeping his books and notebooks on the floor beside his bed in a tidy little row.  So just like I quit fighting the order of the covers, I also quit fighting the books on the floor. 

 
 
Now we have yet another war.  This one concerns his bedspread.  His nice new bedspread.  I noticed something funny about it one day as I helped him make his bed or change his sheets….I don’t remember.  But I do remember that something wasn’t right about his bedspread on one side.  I pulled and tugged, only to find that the whole right side was tucked in, like a sheet.  But you don’t tuck bedspreads in like you tuck in sheets. 

Aaron noticed me looking at the bedspread as I tried to figure out what was wrong with it. 

“Mom, I like stuffing it,” he said.

“Ah, stuffing it,” I replied as I began to understand what he had done.

“Yeah, I stuff it,” he went on.

Well, I proceeded to unstuff the bedspread as we made his bed.  I explained that we don’t tuck bedspreads in like we do sheets. 

“Why?” Aaron asked.

And I explained that bedspreads are made to hang down nicely, all smooth and pretty, and not be tucked in. 

“So I shouldn’t stuff it?” he asked.

“No,” I answered.  “You don’t stuff it.”

So you can guess that over the next few weeks I have often found that his bedspread has been stuffed.  I have then unstuffed it.  But at night, as he and I get his room ready for bed or maybe after I leave the room, he stuffs the bedspread again. 

The other night he saw me staring down at the stuffed bedspread once again.  I looked at him and didn’t have to say a word. 

“You don’t want me stuffing it, Mom?” he asked

“Right, Aaron,” I answered for the umpteenth time.  “You do not stuff your bedspread.”

“You mean you don’t want me stuffing it because you can’t see it?” he wanted to know.

And I told him it was something like that.  Explanations don’t matter one bit to Aaron, I have learned.  Pretty hanging bedspreads matter not at all to him, either.

So today I found once again that his bedspread had been stuffed.  I asked him to please tell me why he stuffed it.

“Well,” he began in all seriousness.  “I lean my feet against the side and they halfway come out under the blankets.”

Aaron doesn’t like his feet coming out halfway under the blankets.  I didn’t even bother to ask him what position he had to be in for this to happen.  I know that we are in another war and that Aaron will win this bedspread war as he also won the war of the order of the covers.

So now instead of saying, “Bring it on!!” – I say, “You know, it doesn’t really matter in the great scheme of things.”

I will make his bed the way I want it made on the days that I have the opportunity, but otherwise, stuffed it will be.

I’m just thankful that Aaron makes his bed, to one degree or another.  And maybe we’ll come to a compromise…..stuffed at night, unstuffed in the morning. 

A sleeping bag on top of his bed is sounding better all the time, actually.

Disappointments

Disappointments.  Not a very catchy, interesting title, is it?  Not even encouraging!  But disappointments are universal.  We all have them in one form or another, nearly every day.  At my age, I’ve had enough serious disappointments that I now count my blessings when my disappointments are more along the line of a bad hair day, getting a cold, missing a fun day with friends, or not getting in on a great sale. 

Disappointments related to Aaron usually come in two varieties.  We are either disappointed IN Aaron for some reason, or we are disappointed FOR Aaron.  We are usually disappointed IN Aaron because of his behaviors.  We are usually disappointed FOR Aaron because of something that hurts his heart, and therefore ours as well.

On November 6, two days before his birthday, I was going to take Aaron to one of Paradigm’s residential homes so that we could celebrate with some of his friends.  We were going to take pizzas and have fun.  Aaron was so looking forward to it!  But he came down with a stomach virus and was unable to go.  How disappointing!  We were disappointed for Aaron, very much.

So a week later, this past Friday, we made the same plans again.  But on Friday afternoon, the plans were canceled once again.  One of Aaron’s friends was having a very rough day and it wouldn’t have been a good situation for us to be in the home that night, no matter how much pizza we brought.  It was going to take time for this person to calm down.  In fact, this client had some words for Aaron during the situation, much like Aaron does when he has a meltdown, and it really hurt Aaron’s heart.  And it hurt and disappointed us, too, for Aaron.

All of this made Aaron act out.  He banged on the car that brings him home, making a small dent in the front of the car.  He yelled at me when he got home, escalating as I tried to talk to him.  He looked in his Friday goodie bag that sat on the kitchen table, and then knocked it on to the floor.  This is Aaron’s way of handling his own disappointments.  Instead of talking about his hurt, he becomes angry.  Talking only makes him angrier, especially my talking to him. 

I had two disappointments going on that evening.  I had my disappointment for Aaron as I was hurt for him in his hurt.  And I had my disappointment in Aaron…..in his behaviors that can’t be allowed, but sometimes can’t be stopped.  His defiance was understandable but unacceptable.  I hid his goodie bag from him as a tangible sign that his behavior was wrong…..and I wished with all my heart that he could just verbalize his disappointment instead of acting it out with harsh words and defiant behavior. 

He finally settled down enough to show an interest in going out to eat dinner instead of yelling, “NO!” as he had earlier.  So before long we met Gary at Outback, where we enjoyed dinner together and especially enjoyed seeing happy Aaron return.  In fact, before we left the house to meet Gary, Aaron said, “I’m just disappointed.”  Wow!!  Victory in three little words!  Aaron expressed his disappointment verbally and I praised him for that as I told him that I understood, and that I shared his disappointment.  I shared it so much that I even watched The Blob movie with him that night.  That movie brought me to a whole other level of disappointment, trust me.  It was painful!!  But Aaron was happy!

He had a rough morning yesterday, Monday, as he returned to Paradigm.  But the afternoon was much better.  Today he got up very early, and at 6:11 I was in the kitchen listening to him talk about The Blob movie that we had watched.  I’m sorry, but 6:11 is a little early to be handling talk about The Blob.  I’m still not over that movie.

Our morning went well, and I was happy for Aaron to be so happy as I dropped him off at Paradigm.  But shortly before 2:30 I got a call.  Aaron was having a seizure.  I had just gotten home from spending the day with my elderly friend, so I was thankful that I was free as I drove to pick Aaron up at his day group.  Poor Aaron!  Another disappointment, this time more for me.  Disappointment for Aaron as he faces these awful seizures……his badly bitten tongue…..his headache…..the interruption in what should have been a good day.  He handles it so well, thankfully unaware of how sad I am for him.

This morning, as I had my quiet time, I did what I sometimes feel compelled to do.  I asked the Lord, as I turned the pages in my Bible, to give me a special word…..something He knew I needed on this day.  Today I flipped from Romans, where I have been reading, back to the first place my turned pages led….to Malachi.  And there in Malachi 3:6 I read these words:  “For I, the Lord, do not change.” 

Simple words, but I knew they were somehow for me today.  As I drove home with Aaron beside me, his breathing having that certain post-seizure sound, I looked up at the sky as very dark clouds rolled in.  There was a mix of bright blue, but coming in were the dark stormy clouds that promised rain.  Our day was changing from bright sunshine to dark cloudiness, just like my day with Aaron had gone from bright happiness to dark seizure concerns. 
 
Disappointments.  Changes.  We face so many of those, don’t we?  And I didn’t wonder anymore why God gave me that random verse this morning in the little book of Malachi.  “For I, the Lord, do not change.”  So in the middle of disappointments, whatever they may be…..and in the middle of the changes that those disappointments often bring…..we can as God’s children stand firm in God’s promise that He does not change.  Ever.

Just stop and think about what that promise means.  God never changes.  He is always the same, loving us and instructing us and being there for us.  No amount of world changes, of family changes, of my own changes….and the disappointments they bring….will ever change God. 

I’m very, very thankful for that promise today.  I’m very thankful that God gave it to me…..humbled, really, as I always am when God speaks to me so kindly and specifically. 

One more thing.  I’m never disappointed in God.  Never.  And I know that He will see us through all of our disappointments, including the ones IN and FOR our Aaron.     

Name Your War

We recently renovated Aaron’s bedroom.  It’s fun to have newly painted walls and ceiling, new closet doors painted a little darker than the walls, new valence and bedspread, new ceiling fan, the furniture moved to new positions, and new organization to Aaron’s clutter.  I bought some really pretty bins that are a tough woven fabric with a bright fabric lined interior.  They are a deep gray color and blend in nicely with his light gray walls.  One of them fit perfectly in Aaron’s night stand opening.  Not only that, but his Handy Answer books fit in that bin perfectly, and even left room for Aaron’s bedtime log book on top.  Perfect!  I was delighted!

But Aaron…..not so much.  He has adjusted to everything in his new room, but there is one area in which he will not budge.  You see, I want Aaron’s floor beside his bed to look like this:

 

Yet Aaron insists on keeping his books that he is reading, as well as his bedtime log book, like this:

 

I want things one way.  However, do or die, Aaron insists on keeping his books in their line beside his bed.  On the floor.  Not in the nice, orderly bin that I purchased for the purpose of keeping his room and floor neat…….but on the floor.  I’ve quit fighting it.  We could have the Books on the Floor War for the rest of our natural lives and nothing would change Aaron’s mind.  Of this I am certain.

The Books on the Floor War isn’t the only battle we fight.  There is also the Is the Plant Real War.  I turned around for a split second at his last doctor appointment while in the waiting room, so at the elevator Aaron held up a leaf…..a leaf that he had just pulled off the plant in the doctor’s waiting room. 

 

“Mom!” he excitedly said.  “That plant is REAL!”

No kidding, Aaron.  And he heard once again the lecture that goes along with the Is the Plant Real War, but I knew my brilliant wartime lecture was falling on deaf ears. 

We also have the Grey Spot on the Sock War.  I don’t know why Aaron insists on wearing the heel of his sock up on the top of his ankle.  I have instructed, demonstrated, assisted, and again lectured…..but to no avail.  More often than not, the grey heel is terribly misplaced, but Aaron doesn’t terribly care.  Actually, he doesn’t care at all.  And he doesn’t understand why I do care. 

Then there’s the Take Things Off the Kitchen Counter And Come Show it To Mom War.  Does he think I don’t know what’s laying on the kitchen counter?  Saturday he came downstairs where I was watching football.  He stood right in front of me, holding up a stick of butter that he had just nabbed off the counter as he walked through the kitchen.

 

“Mom!” he said.  “This says salted butter?  Then it must be sweet!” 

I laughed, and Aaron thought he had won this battle of the Take Things Off the Kitchen Counter and Come Show it To Mom War.  So he launched right into the If It’s In My Hand I’ll Let Jackson Sniff It War, and another mom lecture ensued. 

Finding humor in the way Aaron thinks and acts is one way that I get by from day to day.  He truly makes me laugh a lot, yet there are many times that I really do want certain areas of his life to be more orderly in ways that matter.  I wish that Aaron’s reactions could be as disciplined as a picked up floor, for instance, but there are occasions that his emotions become messy and even painful. 

Such was the case yesterday.  The set-up actually began the day before that, on Wednesday.  Aaron woke up for some reason at 5:09, he said.  Of course he would be so precise.  He went to the bathroom but said he couldn’t go back to sleep, so he went all day with no nap and by that evening was very tired.  Then the next morning, yesterday, he was sleeping soundly when I finally had to get him up to get ready for his day.

Waking Aaron up is usually not a good way for him to start his day.  He was pretty grouchy before we left for his group, but he buckled down and went.  However, on up in the day he had a meltdown with Barb.  He was very belligerent with her and vocal.  He also broke his watch….again.  When he came home later, the first thing he did was to ask me if I had heard what had happened.  I hadn’t, but I could tell from his stressed look and his tired eyes that it wasn’t going to be a pretty story. 

Aaron also shared it with Gary later as they walked around the yard.  I just watched them and thought of poor Gary, handling issues at work all day and then coming home to hear another war story of Aaron’s.  Yet it’s what we do as parents….what all parents do….although at our age we did think we’d be done with all this “stuff” that needs our wisdom and patience. 

We want Aaron’s life to be neat, with everything in its place, like books in a bin.  Aaron had been very happy for a couple weeks, maybe longer, and we were really enjoying the reprieve.  But autism and autistic behaviors don’t just disappear into a neat bin beside his bed.  I had seen the warning signs and I was right.  Aaron hit the proverbial wall and pieces were now scattered all over.

Gary and I helped him pick up those pieces as best we could.  So did Barb as she texted me and told me to tell Aaron that she loved him and would be happy to see him tomorrow.  “He has had many good days,” she texted, “and tomorrow is a new one.”

She was right.  I had to remind Aaron of that fact as he came downstairs this morning with a stormy look on his face, saying he didn’t want to go to Paradigm because of what happened yesterday.  We had to work through it this morning, with me being careful not to escalate this angry time into a War of Words.  He came out swinging, too, as he realized that I was checking the time of the West Virginia/Oklahoma State football game for tomorrow.

“I vote for Oklahoma!!” he declared…..hoping that he had wounded me.  He had no idea of how funny that was to me. 

He did go to Paradigm this morning, rather happily, despite these proclamations during his What Words Will Work on Mom War:

“I’m only going because you want me to!”

“I’m only going because you’re making me!”

“I’m only going because I want pizza!”

 

And when we got to Paradigm, Aaron wanted me to come in and talk to Barb, which I did.  Aaron was a little huffy at first.  He wouldn’t hug Barb, but shook her hand very properly…..and I smiled.  Hopefully he’s been all right today.  Hopefully the war for him is over.  Hopefully his scattered pieces are back in the bin, neat and orderly, although he’ll always leave a few on the floor where he wants them. 

And we leave them there, because some battles in some wars just aren’t worth fighting.  It’s part of what makes Aaron unique, challenging, and full of his own way of living in his world.

It’s part of what makes us stay on our knees, trusting God for what we need to fight whatever war may come our way today. 

  

 

Small Victories That Are Huge!

Anyone who knows Aaron or who has read my blog knows that Aaron is very set in his ways.  He is regimented about his life in every area.  When his routine or his order is disrupted, he will often react strongly.  Or if not strongly, he will react persistently until we just sometimes give up and realize that some issues are not worth the fight. 

Here are a couple examples of his way of doing things.  The first concerns time, and how he will only do things at certain times.  For instance, he will only turn on the television for Wheel of Fortune at 6:28.  Not 6:27.  It must be 6:28.  The other night, Aaron and I were playing Skip-Bo.  We finished our game….which he won, by the way.  He recorded his win in his notebook that keeps our scores, which shows him far ahead of me…..and which gives him great delight. 

“Let’s go to bed,” I said.  Aaron looked at his watch, pushed nearly halfway up his arm…..another way he does things. 

“No,” he said after he saw the time.  “Not ‘til 10:00.”

“What time is it?” I asked.

“9:59,” he answered in all seriousness.

This time I did laugh, though not the belly laugh I desired.  He just looked at me like I was being ridiculous, which made it even funnier.  He is so funny, really, when he does this time thing.  I love it!

“OK!” he declared as he looked down at his watch again.  “Now it’s 10:00!”

So he got up and proceeded to get ready for bed.  He sees absolutely nothing remarkable about this, but I do totally enjoy these glimpses into his unique mind.

Well, usually.  Not always.

He likes to sleep in his sweater, but with his huge pile of covers it’s just too hot for that.  His reason for sleeping in his sweater is that he feels cold at those times he may get up at night to use the bathroom.  He mentioned that fact the other night, so I suggested that he take his sweater off before climbing in bed and just leave it beside the bed, putting it on if he has to get up during the night.  We went over this change at least twice as we got his bed ready that night.

I was washing my face when there was a knock on my door.  It was Aaron, of course.  “Mom, so I won’t sleep with my sweater on?  I’ll put it beside my bed.  If I get up to go to the bathroom, I’ll put it on.  Then after I use the bathroom, I’ll take it off before I get back in bed.  Right?”

That’s right, Aaron.  Three times now that he had gone over this change.

Maybe two minutes later, another knock on the door. 

“Mom, so I won’t sleep with my sweater on?  I”ll put it beside my bed, and if I get up to go to the bathroom, I’ll put it on.  Then after I use the bathroom, I’ll take it off before I get back in bed.  Right?”

Yes, Aaron.  Nothing about that changed in the last two minutes.  Make that four times he had now gone over this change.

But this was a big difference to Aaron, and he wanted to be sure he had it down pat.  And now he does take his sweater off at night.  Good for him!

We have two other victories lately that I want to share.  One is about his bedroom.  We not only just had it painted, but Gary suggested that we change the arrangement of his furniture.  I was skeptical, but Aaron has done very well with this change…..for the most part. 

He has a new bedspread.  I told him I really didn’t want his animal print blanket to cover his pretty new bedspread, so this was a little challenging for   him to accept.  “I want it normal like it used to be,” he told me.  Still I showed him how I made his bed.  “I don’t like the way you do it.  The cover is bent,” he continued.  One day he watched carefully again as I demonstrated it to him.  He still wasn’t sold on it, but he did watch me as I made the bed look like this.

 

I walked up the hall the next morning, and found this.

 

I was delighted!  Aaron had tried to make his bed, even putting his pillow in the right place under the covers and then trying to tuck the covers under it.  Was it perfect?  No.  But to me it was beautiful because it showed a willingness to make his bed in a new way.  Progress!  YAY!!

He likes to put his Handy Answer Book on the floor, along with his bedtime log notebook and his pen.  I got a nice bin to put those things in, but he wants nothing to do with that.  He’ll keep his other books in there, but not these items that he has always kept on the floor.  So I’m not stressing over that small matter. 

 
His other area of routine, and victory, concerns leaving earlier than usual for his day group.  I signed up to take a Bible study on Thursday mornings, but it means I need to leave close to 8:45 instead of our normal 9:15……..just on that one day.  I talked to Aaron days before it was to happen.  He listened, but I knew he was mulling over this dilemma.  Then he said he would do it, and I was pleased, but skeptical.

On Wednesday night before the day of the big change, Aaron came downstairs where a friend and I sat. 

“Mom, I want to leave by 9:15!” he blurted out as he stomped across the room.  I knew exactly what he was talking about, and my heart sank.

He walked out of the room, but turned and barged in again.  “I want more time on my computer!” he angrily said.  And he sat on the couch beside me, and gave the ottoman a resounding, very loud whack with his big hand. 

He finally calmed down as I told him we would talk later, but at bedtime he seemed fine.  I was full of trepidation as I walked in his room the next morning, carrying his coffee and wishing that of all mornings he would have gotten up early like he sometimes does. 

He did get out of bed and one of the first things I heard was, “I want to leave by 9:15!”  I heard this from him several times that morning, but he wasn’t really angry.  And when it came time to go, don’t you know he got in the van and went at this early time without a fight?  I was so pleased and surprised and very relieved!

I pointed the beautiful clouds out to him as we drove to Paradigm.  I gave him an extra dollar before he got out of the van, and he was very pleased with that.  And as I drove away, in Old Town Wichita, I looked up at the gorgeous sky and I remembered that I needed to thank God for this real blessing on this morning.  It was a tangible touch of God’s grace in my life and I was so thankful for that. 
 

My friend at Bible study asked me how Aaron did, and she told me that she had been praying since Sunday for Aaron to do well.  That was another blessing!  I had no idea that she was praying. 

So between sweaters by the bed and new bedspreads being accepted and leaving early yesterday, I have reason to give Aaron a high five and a congratulatory thump on the back.

No, not the thump on the back.  He’ll return the hit and it won’t be soft, trust me!  Extra dollars don’t hurt nearly as bad.

 

 

 

 

Painting Aaron’s Room

This past Saturday was a big day for Aaron.  That’s the day that we had his room painted.  The popcorn ceiling was removed and then the ceiling was painted; his walls were repaired and painted; and then the hall bathroom was painted as well.  “Us kid’s bathroom,” as Aaron calls it.  It’s fun to have a room painted, especially when you’re not doing it yourself.  We hired our neighbor’s friend, Rudy, to do the job for us. 

But for Aaron, it’s not fun to have a room painted…..especially when the room is his room.  He doesn’t care who is doing it.  He just doesn’t like all the ways that it affects him. Of course, we know this about Aaron.  That’s why we started preparing him for this big event a week before the job was to be started.  As we were eating on that Sunday, we told him with excitement that his room would be painted that following weekend.  We exhibited the same enthusiasm as we told him that we would need to move all of his furniture, except for his bed, out of his room before the painter came on Saturday.  

Aaron tilted his head as he often does and was silent as he thought about what we had just told him.  He was staring out ahead, but we knew that in his head things were happening.  You could almost hear the wheels turning as Gary and I waited with apprehension for his reaction.  Finally he spoke.

“Are you moving my book shelf with all my DVDs on it?” he asked.

We told him that we were going to move it.

“They need to be in order!” he told us.  “You’re not taking them off, are you?”

We assured him that we could move the book case without removing his DVDs……DVDs that are in a particular order and should not be disturbed by us mere mortal parents who have no idea of the importance of that order. 

On the next day, Monday, during supper again, Aaron asked about having his room painted.  “You’re not messing up my DVDs, are you?” he once again asked.  And we once again assured him that we would not mess them up.

“Well, can I play my computer?  Will it be messed up?” he anxiously asked us.  So we assured him that his computer would not be messed up and that he would be able to play it again.

“After the room is painted, can I hang my calendar?” he wanted to know. 

We told him that he could hang his calendar after we decided where all his new wall art was going to be hung…..but yes, he would definitely have his calendar.  The smallest things are huge to him.  There is no such thing as a small change in Aaron’s life.

And later that night, we heard the question again.  “So you’re moving my book shelf and DVDs?  You won’t mess them up, will you?”  This is when I began praying that we wouldn’t tip the book case over and spill the DVDs.  I couldn’t even imagine that scene.

On Tuesday, Aaron looked at us with worry as we told him that we would move his things out of his room on Friday night. “Can I play my computer just one last time before we paint my room?” he questioned.  He sounded like he was making his dying wish, for heaven’s sake!  This was just Tuesday, but he was wanting to be sure that on Friday night he could play it just before we moved it. 

Over the next several days, he continued to ask questions and to try to adjust to this huge coming disruption.  The big move on Friday evening went smoothly.  Gary even hooked Aaron’s computer up in Andrew’s room, still on Aaron’s own desk, and he was one happy camper…..despite the change.

We then broke the news to him that he would be sleeping in Andrea’s bed on that night.  He was very skeptical about this prospect.  I praised her bed and extolled all of its comfort and convenience, but he wasn’t convinced.  He said it wasn’t the same size as his, and I told him it was.  He said his sheets didn’t fit on it as well as I took her sheets off and put his on, but I told him they did.  I shot down all of his arguments as we placed his covers on the bed in their particular order that he likes and as we placed his snake, skunk, and frog in their certain places.

I got him tucked in, turned the light off, and said one last good-night as I closed the door.  I went to my room, but it wasn’t long at all before I heard that he was out of bed.  I opened his door and found him sitting on the bed, signing his bedtime log.  Of course.  It’s important for him to record the time he goes to bed and the time he gets up.  Once that was done, I tucked him in again and turned off the light.  He was in bed once again.

I was washing my face when I heard the knock on our bedroom door.  “Mom?” I heard Aaron ask.  “Can we watch Wheel of Fortune tomorrow?” 

Yes, Aaron, we’ll watch Wheel of Fortune tomorrow.  Now go to bed.

“Well, I don’t really want to sleep in Andrea’s bed.”

Go to bed, Aaron.

So he went to bed, where I tucked him in once again.

It didn’t take long until there was another knock on our door. 

“Is it going to rain?” he wanted to know.  I told him I didn’t think so.  “I mean, like a storm?” he asked.

No, Aaron, it’s not going to storm.  Go to bed.

He went to bed again.

Soon I heard it.  Thump, thump, thump.  Aaron was going down the stairs.  He was back upstairs before long, where he told me that he went downstairs to say something to Gary…..anything to keep from getting in bed. 

Aaron…..Go.  To.  Bed.  He did.  And he stayed, thankfully.

His report the next morning:  “I didn’t sleep well.  It’s not like my bed where the covers don’t move a lot.”  I didn’t have the energy at that point to ask him to explain that one.

Aaron handled the actual paint day very well.  He stayed busy on the computer, talking to us, going outside to sit by the garden and relax in the leaves and sticks, and generally ignoring what was happening in his room.  He showed no excitement or interest at all.  His biggest concern was his shower that night.  He couldn’t use “us kid’s bathroom” since it was still wet.

“It’s 8:00,” he said.  “I need to shower.”  His shower is at 8:00 every night, or shortly thereafter.  NEVER before 8:00.  Just so you know.  We do.

I took his towel and pajamas into our bathroom, which once again didn’t thrill Aaron.  “I wish this man wasn’t here,” he lamented.  “And I wish I was back in my room.”

Well, the next night he WAS back in his room.  I was worried because Gary wanted to move Aaron’s furniture around.  I just knew that this would tip the boat, and be too much change for Aaron.  We used our excited voices when we showed it to him.  All he cared about was:  were his DVDs messed up; was his computer going to work there: and when could he hang his calendar.  He was pretty unimpressed with everything else, and pretty irritated as we showed him some new things about his room. 

“You guys think I don’t know anything about my room!” he impatiently told us.  So we kept quiet as he went on playing his computer game. The amazing thing was that he handled the new room with ease.  That was a surprise for me!  He even slept in his bed that night, happily, despite the fact that his nightstand holding his lamp and his clock were on the opposite side from where they usually are.  He’s also putting his Handy Answer book on his night stand shelf instead of on the floor like he prefers, and tried to do the first day.  Progress!!
 

 
He followed me as I carried his coffee upstairs to his room on Monday morning. “Can we put the coffee on the shelf like we used to before that man came over?” he asked.  He refers to the painter, Rudy, as “that man.”  And he says it with an element of disgust, so it shows me that he really is somewhat frustrated by all of this change.  And he blames it on our painter, because Aaron has to blame someone for his discomfort.

Aaron’s room being painted is a huge improvement, though he doesn’t seem to care one bit about it.  But just as huge is how well he did with this interruption to his routine, and how easily he has adjusted to his new room. 

Also huge:  his DVDs didn’t get one bit messed up.  Thank you, Lord!!!

 

 

 

 

Water, Water Everywhere

Some of you have asked about how Aaron is doing with his water restrictions.  He’s not.  As in, he’s not really complying the way that I had foolishly hoped he would.  I mean, he’s definitely drinking less than he was before the SODIUM doctor, as Aaron calls him, imposed these horrid restrictions on him.  It’s all the doctor’s fault, at this point and to hear Aaron tell it…..unless Aaron’s also mad at me, and then it’s mom’s fault, as well. 

Can you tell that Aaron isn’t really into this water monitoring business?  I threw out the idyllic plan of completely adhering to 56 ounces of water and other fluids a day after the second day. I mean, how do you completely measure all the fluids that enter his mouth?  He’s a grown man who can go into the kitchen or even the bathroom at any time he wants and grab a drink of water.  Or a water bottle, as he loves to do.  More on that later.

Then he’s at his day group all day during the week.  Even if they try, they can’t tell exactly how much he’s drinking, everywhere he goes, all day.  But I do know that he’s drinking far less than he used to drink, and so I’m going to claim success…..to some degree. 

Oh yes, add on to all the above the fact that he has the autism issues.  If you read my last blog about this water subject, I hope you grasped a strong sense of what it’s like for Aaron.  For instance, the two cups of coffee when Aaron always has three cups.  Now we’re back to three cups of coffee.  Aaron isn’t at all adverse to monitoring that aspect of his restrictive life as he stands right beside me, like a supervisor making sure his subordinate is following all the rules.  Three cups.  Not two.

And not with just a little bit of coffee in each cup, either.  He’s not blind.  He does see and measure the amount.  I pour as little as I can to get by with it and yet still keep him content.  How low can she go?  Aaron will tell me, don’t worry.

And…..lest you get the idea that I let Aaron rule the roost around here, it’s not so.  But….Gary and I do have to live with Aaron, and a constantly frustrated and angry Aaron is impossible to live with.  It’s so easy to assume that he can just handle these changes, but he truly cannot just handle changes like this.  It is not in his make-up or his genetics or his brain function to “just handle” such important matters as his all-important coffee and water consumption. 

One more thing.  When Aaron gets angry about something, he will transfer that anger onto whatever else is irritating him at the time.  All this fluid nonsense is REALLY irritating him right now.  Yesterday he was very impatient about going to Taco Bell.  I had told him I would take him, but not until after the last elimination run of the drag race was over.  After some time had gone by, Aaron decided that this was taking forever.  His impatience flared, and before you knew it, he was talking about sodium……how it doesn’t matter to him, how he doesn’t care about it, how he doesn’t mind getting sick or going back to the hospital.

And with his last, “I don’t care!”…..after we had offered another reason why it’s SO important to keep his sodium levels up and his fluids down…..he marched upstairs and drank some orange juice.  So there!

Later, though, just before bed, he asked if he could have a peach.  We sat at the table while he noisily ate each juicy slice and happily talked.  All anger was gone, and there was no talk of fluids and sodium.  Until he asked, “Mom, is a peach bad for my sodium?”  I was relieved to be able to tell him that a peach was NOT bad for his sodium.  And I wished he could stop and be as concerned about his sodium when he’s angry as he is when he’s happy. 

If you read my last blog, you also remember that Aaron always keeps two large water bottles in the kitchen frig.  I had to throw them away after our visit with the SODIUM doctor.  I replaced them with one little squat 8 ounce water bottle.  Not two.  One.                                                                                                              

 
After Aaron ate his peach, while I rinsed his bowl at the sink, Aaron remembered something.

“Mom!” he exclaimed.  “Look at what I did!”

He grabbed my arm and was trying to pull me across the kitchen.  I protested, thinking that he wanted to take me to his room to show me some random thing he had done on his computer.  But he insisted that what he wanted to show me was right here.

He flung open the refrigerator door.  And VOILA!!  There it was!!

He pointed with great delight to the refrigerator shelf, where there now stood TWO little squat 8 ounce water bottles.  Not one.  Two.
 

“I don’t want it to just be one,” he informed me.  “I want it to be TWO!!”

There we have it.  Aaron must have two water bottles, even if they are just little squat 8 ounce bottles.  He has two.  Not one.

And there they will remain, those two little bottles.  I’m not fighting this battle.  We’ll still limit fluids as we can and see how this goes, but there are other methods to increase his sodium.

I’m thinking a salt lick right beside his desk.  He might think that’s COOL!! 

Even if it is SODIUM!!

 

Day One……Day Two…..Day Three…..

When Aaron was hospitalized in June, the biggest concern that his doctors had was his very low sodium count.  We knew he also had something else going on because of his high fever.  His pneumonia didn’t show on X-rays for a couple days, but the sodium was a huge problem because it can affect the heart.  There are at least three reasons why his sodium may have dipped so low.  It could be one of his seizure drugs that he’s been taking for years; it may be a syndrome related to the pituitary gland; or it could be that Aaron drinks too much water.  Too many fluids can wash sodium and other nutrients out of the body at too great a rate.

Dr. Broberg, Aaron’s family practice doctor at McConnell Air Force Base, has been seeing Aaron since his hospital stay.  He recently checked Aaron’s sodium levels again, twice, and found that they are once more going down to an unacceptable level.  Therefore, he wants us to limit Aaron’s fluid intake to about a liter and a half a day.  Now, this sounds like Aaron can still drink a lot but when you consider coffee in the mornings and even the water he drinks with his pills twice a day, there isn’t a whole lot left over for Aaron to just casually drink during the rest of the day.  At least it’s not a lot for Aaron, who does love his water.

Aaron usually has three cups of coffee in the morning.  They’re not always full cups, but still there are three cups.  Aaron’s a creature of routine, remember, so if he has had three cups of coffee in the past then he wants three cups of coffee in the present.  Three.  Not two.  And definitely not one. 

Aaron also has two water bottles that he keeps in the frig.  Each bottle holds 23.6 ounces.  I know that now, because I had to calculate his intake on Thursday, our first full day of our new routine.  Aaron loves taking those two water bottles to his room and drinking the water while he watches a movie or plays a game.  Two.  Not one.  Definitely not one.

Day Number One: On Thursday morning, I began calculating ounces of fluid before Aaron got out of bed.  I decided to give him 10 ounces of coffee, which isn’t much.  So I split it between two coffee cups.  It really didn’t look like much at that point as I stared down at the halfway filled cups.  Well, maybe Aaron wouldn’t notice, I thought.  Silly me. Then I allowed him 5 ounces of water to drink with his pills, and that would be his morning allowance. 

I didn’t phrase it that way with Aaron.  In fact, I didn’t say anything about restrictions or allowances when Aaron plodded into the kitchen that morning.  I just poured his coffee as he stared at the empty carafe when I was finished.  I poured his pill water, which he usually does, as he continued to stare.  He was doing his own calculations, I just knew it, and it didn’t have anything to do with wanting to comply with doctor’s orders.  It had everything to do with restrictions, even though I didn’t say that ugly word.  It had everything to do with his routine, as well.

I tried to be as normal as possible and as happy as could be without being weird, as Aaron would call me if he sensed that I was being fake.  Finally, he said something about only two cups of coffee.  Oh boy. 

“Remember that you need to be careful about how much you drink?” I reminded him.  “And isn’t it great that you can still have coffee?  Some people can’t drink coffee at ALL!” 

He was pondering that dismal outlook as I left his room, where I had put his two cups beside his desk……in the place where there are usually three cups.  Two cups.  Not three.

The rest of the morning was without incident.  I let our Great Dane ride with us as I took Aaron to Paradigm.  Aaron loves that and I wanted Aaron to love as much as he could on this day of the beginning of restrictions.  Aaron was happy for me to run into Paradigm and discuss the fluid situation with Barb, telling her of the need to monitor Aaron’s intake.  She saw the difficulty in this prospect for Aaron, though she didn’t say a lot about that element.  The looks between us spoke volumes. 

When Aaron got home that day, he told me that he didn’t drink anything while at Paradigm.  I told him that he didn’t have to go without water all day.  He took that to heart as he later reached into the refrigerator for his two water bottles, which I should have replaced with smaller bottles earlier.  As he started to take the two bottles, I told him to take one bottle instead.  One.  Not two.

Furthermore, I told him to drink half of the bottle now and then save the other half until later.  Surprisingly, he agreed.  He was fine for the remainder of the evening, even joking about drinking his other water bottle but not touching it at all.  So far, so good.

Day Number Two:  I felt confident on Friday since Aaron had done so well the day before.  He was handling this restrictive life better than expected.  Yet I knew, too, that his attitude could quickly change.  This was confirmed when Aaron came downstairs after he got out of bed.  He sat across from me at the kitchen table, still sleepy and unsmiling despite my chipper, “Good morning, Aaron!”

“I’m just beginning to hate that doctor,” he said without emotion.  “I want my two bottles of water.”

Well, he laid it out on the table first thing.  Now to deal with it.  God said to ask for wisdom when we need it, so I did.  Not out loud.  Aaron would have thought I was weird.

“Do I have a doctor appointment?” he asked.  He was wondering about the next week.  I told him that he did have a doctor visit scheduled. 

“Is it that SODIUM doctor?” he asked with emphasis.  I told him that it was not Dr. Broberg, careful to use his name, but was with his seizure doctor.  I gently tried to clear Dr. Broberg of all sodium charges, explaining Aaron’s situation and history, but of course this all meant little to Aaron.  He was simply dreading another long day of drinking only one water bottle.  One.  Not two.

He watched me as I got up from the table and starting getting out his coffee cups.  “Can I have three cups of coffee?” he asked.  “Those two went by fast!” he added.

Oh Aaron, you do make me smile even in the midst of your frustration.  So I did give him three cups of coffee, which exceeded my desired liquid limit for him…..but the cups were only about half full.  He noticed this, of course, and I reminded him that he often has half full cups of coffee since he is often shaky.  He accepted that explanation, and I carried his half full cups of coffee up to his room, where I set them in their usual place.  Three cups.  Not two.  Aaron was moderately happy, but still suspicious.
 

Later, as I was drying my hair, Aaron strode in the bathroom.  He had a smile, and now it was my turn to be suspicious.  My instincts were correct.

“Mom!” he said with excitement.  “I drank my TWO bottles of water!”

“You didn’t,” I responded.

“Yes, I did!” he replied.  “But I drank half and then half and then half.”

I just stood there.  I wanted to laugh and I wanted to lecture, but I was truly relishing his method.  He remembered that I had instructed him the day before to drink half of his water bottle.  So on this morning, he decided that referencing those “halves” would soften the blow of his disobedience.  Pretty clever, actually.  I wanted to tell him that for two water bottles, he really should have added another half to his list.  But I decided that this wasn’t the time for a math lesson.

Sure enough, in his room stood his two water bottles.  Totally empty.  Two.  Not one.  And not one half.
 

Sigh. 

Today I replaced his 23.6 ounce water bottles with an 8 ounce bottle.  Such a little bitty bottle compared to the others!  You should have seen his face when I showed it to him!  Half amusement and half surprise and half disgust.  I guess that’s one too many halves for just one bottle.  One.  Not two.

 
Dr. Broberg had no idea of the complications this fluid restriction would cause in Aaron’s life, and therefore ours as well.  How could he?  Living with autism is complex enough on a “normal” day.  Throw in restrictions and changes and routine disruptions, and you have a mess on your hands. 

Day Number Three:  Today is Saturday and Aaron is happy.  We hope that this happiness lasts.  He does have three cups of coffee, partially full.  Three.  Not two.  He has one little water bottle.  One.  Not two. 

And I do have hope that we can make this work.  I have hope on this day three.  I did not have much hope on day two.  Let’s pray that we can look back on this day three and see it as a successful day.  Then I will want more days like this one.

Day three.  Not day two.

 

Bumps In the Road


I don’t know that there is any one routine of Aaron’s that is more important than another, but if I was pressed for an answer I would say that his bed time routine is way up there near the top of his Important Routines List.  And by the way, it would be just like Aaron to keep a list of such things if he thought of it, in yet another notebook for which he would find the perfect spot in his room….and there it would stay, placed exactly so, every single day of his life. 
The strictness of his bed time routine, which includes going to bed at or very near the same time that I go to bed, is the reason I began preparing him for a change early Sunday evening.
 “Aaron,” I began, “I need you to prepare yourself because I may go to bed a little early.  I’m getting a cold and I don’t feel well.” 
I could tell right away that he didn’t like this idea.
“What time?” he asked with a frown on his face.
“I don’t know exactly what time,” I replied.
Aaron thought for a few seconds, pondering this unwelcome change.  Mom might go to bed before I go to bed?  
“Will it be before night?!” he asked with great concern.
I knew he meant before dark.  Would I go to bed before dark?!  How disruptive and awful…..for HIM.  Never mind about my cold or about how I felt.  Aaron is, without doubt, most often about Aaron. 
I assured him that I would not go to bed before night, and he walked away to think on this sudden turn of events.  But as it turned out, I ended up asking Aaron later that evening if he wanted to play a game of SkipBo.  That game took up part of the time before night, so Aaron was saved, and our bed time routine was really no different than any other night. 
During the night some storms moved through our area.  They were pretty rough storms, and we briefly lost power several times.  That meant that Aaron’s clock on his night stand was disrupted and probably flashing, I thought, as I reset the clock on the microwave that morning.  Sure enough, when Aaron walked in the kitchen later, the first words out of his mouth were about his messed up clock. 
“Mom, the clock by my bed shut down, so I can’t write in my book what time I got up.  Can you fix it now?”
Knowing the importance of this part of his morning routine, I followed him upstairs immediately.  He called out the time to me from his satellite clock by his desk as I pushed the buttons on his clock and got the time just right.  He then wrote the correct getting-up time in his notebook, and all was well for the moment.
Aaron dressed and came down to the kitchen again to take his pills.  Soon he was holding an object of great interest to him…..a summer squash from our garden that was very dark, bumpy, and tough.  Any item that is the least bit unusual holds Aaron’s attention, and for the moment this bumpy squash was what Aaron wanted to hold and feel and talk about.  In fact, he carried the squash up to his room and placed it on his chest of drawers.  I was tempted to bring it downstairs right away, but I decided to leave it there for the time being.  What did it hurt?
Aaron had a doctor appointment later that morning.  As we drove across town, he told me about a song from a movie he was watching.  He hummed the song for me to hear and to identify.  Usually I can’t really tell what he is humming, but this time he did a great job and I knew the song….except for the life of me I couldn’t remember the title.  I told Aaron about my Sound Hound app that would let me hum a few bars while it identified the song, so Aaron could hardly wait for me to do just that.  We found an area of the doctor’s waiting room that had no one sitting close, and so with a very excited Aaron sitting beside me, I sat there humming this song into my phone.  It was pretty funny!  And sure enough, Sound Hound told us that the song was “Joyful, Joyful We Adore Thee.”  Aaron bent over in his chair, his hands rubbing together quickly and with great delight, as I wondered how on earth I could forget the title to that song. 
We waited to be called and Aaron, who can hardly keep his doctors straight by name, asked, “Is it gonna be that one who asked me if I use drugs?  That was dumb!”  No amount of explaining will ever change Aaron’s mind that it was very dumb for a doctor to ask him if he uses drugs.  The doctor soon called for Aaron to come, so we both followed him to his office.  He stepped back for us to enter, and he said, “Hi, Aaron!”  To which Aaron replied….with nothing.  Total silence.  I was glad that he smiled with what I hoped was understanding.  This is just our second time to see this doctor, who is supposed to have an understanding of autism.  I hoped that understanding of his was working today.
The doctor began asking questions about how Aaron was doing since the last visit.  How are his seizures?  So we discussed that issue at length.  How are his behaviors?  We talked about that as well.  I was talking and the doctor was listening, when suddenly on my leg came a big WHACK!!
Aaron had soundly hit me on my leg, right in front of the doctor.  And then Aaron immediately said, “Tattle teller!!”
That was what Aaron used to say when he was a kid if someone was telling something they shouldn’t, or something he wished they weren’t.  The doctor’s eyes were staring from over his computer screen as I talked to Aaron.  I knew very well why Aaron whacked my leg.  He was frustrated at being talked about.  He does have feelings.  So I explained why the doctor needed to know these things, and the doctor chimed in as well, and Aaron settled down.  Oh well.  The doctor may as well see Aaron as Aaron is.  And it was probably good for both the doctor and me to be reminded of Aaron’s sensitivities.  
I know that Aaron is facing another sensitive issue today, too.  One of his favorite Paradigm staff has left, and so Aaron’s life there will change a lot.  I know that if one thing in life is certain, it is that life will change.  Easy for me to say……far harder for Aaron to deal with in an appropriate way.  Of all days for Aaron to find this out, too.  Aaron was grouchy this morning about going to his group today.  Three days off sometimes does that to him.  He went willingly after working through it, but gave the van door a little harder shove closed than usual when he got out.  I have no idea how his day has gone or if he knows of his staff that has left, but I’m sure I’ll soon find out when he comes home. 
I thought of all this when I walked upstairs earlier and saw the bright yellow squash sitting in Aaron’s room.  That squash, so full of bumps.  The bumps are what fascinate Aaron.  They are also what make that squash somewhat tough. 
Aaron has plenty of bumps in his life, too.  I’ve seen several of them in the past couple days, much less all the years that he has dealt with so much.  Bumps in the road are a part of life.  Some seem to have more bumps than others, that’s for sure.  Gary and I are sometimes able to ease Aaron over the bumps, like I tried to do concerning the possible change in my bedtime.  Sometimes issues are easily solved, like changing the time on his clock or humming into Sound Hound.   Other matters are deeper, like the one evidenced by the whack on the leg that Aaron gave me.  He didn’t like being discussed, but it’s necessary.  It’s painful for us both, and is a bump that he and I both deal with at nearly every doctor visit.  
This new bump, of one of his favorite people being gone out of his life now, will be a huge new bump for us.  I don’t know how it will affect Aaron.  He may surprise us and do well.  He may have good days and bad days.  But it’s a bump that we will be forced to navigate one way or another.  I’m thankful for the wisdom that God promises to give to those of us that are lacking and that ask Him for it.  I have been asking today, that’s for sure!
Maybe I’ll just leave that bumpy squash in Aaron’s room.  It will remind me every time I see it of this time.  Hopefully I will look at it in the weeks to come and remember how God eased us over yet another bump in this road we travel with Aaron. 

One Minute Matters

The last blog I wrote told about Aaron’s difficulty in returning to his routine.  He had a very difficult three days as he adjusted to leaving the house every morning and going back to his day group.  Monday wasn’t too bad, Tuesday was awful, and Wednesday was very “iffy.”  I wrote about Tuesday……the slumped shoulders, sitting in the rocks, actually throwing some rocks, etc.  On Wednesday, I went into the building ahead of Aaron because he said he wasn’t getting out of the van.  I just got out and headed inside, and so he followed me.  He talked to Barb, who knows how to calm him, but he kept saying he wasn’t going to stay.  Barb said she would just drive Aaron in her truck over to where Bryan was working on a house, so Aaron walked outside with her, all the while saying that he was NOT staying at Paradigm.  I just stayed mostly quiet.  Aaron stood at our van, but finally went with Barb and then had a good day.  I drove away just asking God for wisdom, patience, and strength.  We ask God often for those three things when it comes to Aaron.

Later Barb and I texted.  She said Aaron was totally fine the rest of the day.  I told her that I think he is testing me, and she said that they would do everything they could to see that I passed the test.  And the staff at Paradigm truly does just that.  They know Aaron, and they know how to work with him….how to calm him……how to understand what’s behind his actions, when they can understand.  Sometimes no one can figure him out. 

Bryan and Aaron worked together all week on different house projects…..residential settings that Paradigm manages.  Aaron was quite proud of the fact that he helped Bryan put tile down on a floor, but on Thursday he brought a piece of the “tile” home and we saw that it was actually laminate flooring.  It wasn’t long before Aaron had given me a resounding whack on my rear with his little plank, and he got a good lecture from me.  I learned the next day that he had done the same to Barb.  He just never seems to get it…..rarely is able to control those impulses.

 
Anyway, he came home on Thursday all smiles as he couldn’t wait to show me what Bryan had fixed for Aaron to wear around his head as they worked.  It was fun to see Aaron smiling and so happy.  He went from his slumped shoulders on Tuesday:

 

To a face full of smiles on Thursday:

 

Today he said, “Mom, Bryan told me that I’m his number one man.”

“Oh, Aaron,” I replied.  “That is such a nice thing for Bryan to say!”

“I think it’s weird,” Aaron flatly replied……which made me laugh……which Aaron also thought was weird. 

He’s so funny.  Last night he was watching an alien movie in his room, having a blast.  But when he came downstairs and saw a sweet family scene on the movie “McFarland,” he said, “That’s weird!”  So for Bryan to call him his number one man seems weird to Aaron, but deep down I think Aaron loves it.  He just doesn’t know how to convey that sentiment like we do.

Just like he doesn’t know how to handle his frustrations over returning to real life after a month away.  Instead of sitting and having a conversation about it, he has to yell and threaten and cry and throw rocks.  Then our frustrations mount, and we have to be so careful how we handle it.  I’ll admit that it gets old.  Gary and I were talking about it last night.  We really don’t know what a “normal” life is at our age.  Other parents of children, young or adult, with behavior issues know exactly what I mean.  Yet there aren’t many great alternatives, and we do love Aaron.  God gave him to us, so we just take one day at a time.  And we are ever thankful for people, like the staff at Paradigm, who work so well with Aaron and help us on this journey.

We see progress with Aaron, but his core issues will probably always be the same.  I’ve always tried to see the humor in so many things that he says and does.  Sometimes I don’t have to look hard, for he truly is so funny so often.  On Friday, our electricity went off a couple times, so Aaron’s clock by his bed was messed up.  As I was helping him get everything ready for bed, he asked me if I would set his clock.  I told him to look at his satellite clock beside his desk and tell me the exact time so that I could get it right on his night stand clock.

“OK, Mom.  It’s 10:05,” he said.

So I punched the buttons for the hour.  Then I did the same for the minutes. 

“It’s 10:06 now, Mom!” he told me.

And wouldn’t you know, I punched just one too many and the clock said 10:07.

“Oh well,” I said.  “One minute won’t matter, Aaron.”

Who was I kidding?!  And I knew it.

He just stood there staring at his clock.  And I knew that one minute did matter.  It mattered very much to Aaron.  He can halfway brush his teeth.  He can wear the same pair of socks for days in a row, seriously, if I don’t catch him.  But one minute too fast on his clock is not tolerable.  Not at all.

“No,” he replied.  “I want it at 10:06.”

So I hurried and re-punched the buttons, but by then it was nearly 10:07.

“Wait,” Aaron said. 

And he began counting the seconds.

“48…49….50….51…” he continued.

And when he said “60!” and the time was now officially 10:07, I punched the little button very carefully, ONE time, and then all was well.  It was 10:07 on his nightstand clock and on his satellite clock.  They were synced correctly, and now Aaron could go to bed.

If only he would sync his life to ours as easily!  If we could just punch a button here and a button there, and make us all line up together in harmony…..wouldn’t that be awesome?

But I know if we did that, then we would also miss a lot along the way.  Like I told Gary last night, even in the midst of our tiredness and sometimes deep frustrations, we really can look at many amazing facets of Aaron.  We just need to remind ourselves of that on some days when no matter how many buttons we push, things just don’t line up the way we want. 

Honestly, on many days we end up syncing ourselves to Aaron.  We can pretty well predict how he’ll react to different situations, and what he’ll say.  He doesn’t sync himself to us nearly as well, but when he does it’s cause for celebration.  Like how he made it through this week and the expectations that were made of him.  It was a huge accomplishment for Aaron!

But tomorrow morning may be another story.  I need to remember that ONE minute.

48….49….50…..51…..