Category: Change

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…..

The Way Aaron Wants Things

Transition:  a passage from one state, stage, subject, or place to another; CHANGE.  (Webster’s Ninth New Collegiate Dictionary)

From Online Asperger’s Syndrome Information and Support (O.A.S.I.S.):  Individuals with Asperger’s are easily overwhelmed by minimal change…..  MINIMIZE TRANSITIONS.

Guess what we are in the middle of with Aaron?

CHANGE!!

TRANSITION!!

And we cannot minimize this transition period.  Our motto, and Paradigm’s motto, this week is “Hang on, breathe deep, and hope and pray for the best.”

Aaron returned to his day group, Paradigm, yesterday – almost a month to the day after he entered the hospital for a week.  After returning home from the hospital, he had doctor appointments…..he had lots of healing to do……lots of strength that needed to return…..and setbacks, like his rash last week that needed to be treated.  We also took a trip to Houston over the Fourth of July, spending five fun days with Andrea and on the road.  Life was good for Aaron, especially after he started feeling better.  He loves nothing more than staying home with his computer and movies and games and television.  Throw in an occasional shopping trip, eating out or bringing in take-out, and what’s not to like?

I’ll tell you what’s not to like.  Returning to the real world, to a schedule, and to Paradigm is what’s not to like…..for Aaron.

Transition….big time!

One evening I was in Aaron’s room as he got ready for bed.  I had helped with putting Mr. Snake, Mr. Skunk, and Mr. Frog in his bed.  Every bit of each stuffed animal must be just perfect, placed exactly where Aaron’s unwritten rules say they should go.  I thought I had them perfect, but they were just a tiny bit “off” and so Aaron pulled back the covers I had pulled up, and he rearranged them just the very littlest bit.

I chuckled at this.  Then Aaron said, “I want things the way I want them.”

 
No truer words were ever spoken!  This describes Aaron better than any concise statement I could have ever tried to formulate.

Aaron wants things the way he wants them.  I guess we all do, really.  But for Aaron, as with so many autistic individuals, the desire is carried to the extreme at times.  Many times, in many ways.  It’s very difficult to dissuade Aaron from wanting things the way he wants them, too.  And to accept the fact that life doesn’t always allow him to have things the way he wants them. 

Staying home has always been the way Aaron wants his life to work.  So being home for all these weeks was just the best case scenario for our Aaron.  Going back to Paradigm is the worst thing, in his mind, that could have happened.  And it happened.  It’s happening now.  And we are hanging on for the ride.

Yesterday wasn’t bad.  Aaron was a little reluctant about going, but he and I walked into Paradigm with Aaron beaming.  He loved seeing Barb and Brandy, and later seeing Bryan.  He loved his friends saying, “Hey Aaron!  We missed you!”  He loved telling them about his trip to Houston.  He loved going with Bryan to help lay tile at a Paradigm house, and eating lunch at Wendy’s.  When he came home, he told me all about his day.  He showed me his receipt from Wendy’s.  He pulled out a business card from his pocket that he had gotten at a building supply store with Bryan, and he added it to his other business cards that he has confiscated over the years.  He also pulled out of his other pocket some change that he said he found on the floor at Paradigm.  He listened to my skeptical response.  He pulled out his billfold.  Finally his pockets were empty, and he went happily about his evening.

But today…..today wasn’t good.  Aaron didn’t want to go this morning.  He made that known at home by continually telling me that he wasn’t going today.  Finally he got in the van, and he was fairly pleasant on the way to Paradigm, although still saying that he didn’t want to go.  I’ve talked to him about a special meal on Friday to celebrate his first return week to Paradigm, but he told me this morning that he didn’t care about a special meal.

It’s best when Aaron is like this to just keep my affect as low as possible.  If I react strongly, then he will react even stronger.  Trust me….I have learned this.  So the less I talk, the better.  The less I react, the better.  I may tell him I’m sorry, or that I understand, but trying to lecture or to make a point is useless.  When Aaron is in his “I want things the way I want them” mood, then it’s best to be as quiet as possible.

I pulled up to Paradigm.  Aaron crossed his arms and refused to budge.  I calmly urged him to go on in and start his day.  After a short time, he opened the door and got out, but his face was a picture of real anger.  He slammed the van door, and then walked with sloping shoulders, slowly, up the sidewalk.  He looked like the weight of the world was on his young shoulders.  Then he stopped, and sat down in the rocks beside the sidewalk.  Melinda was just going in, so she stopped and talked to Aaron.  I decided to drive away as Melinda and I waved.

I guess that she talked to Aaron awhile, and then Brandy came out to talk to him.  She sat in the rocks with him, on his level, and he cried…..a sure sign of great frustration.  They went on a drive and Aaron calmed.  Bryan came back to Paradigm to pick Aaron up and take him to help him lay tile again, I assume.  Aaron enjoys helping Bryan with house jobs.  And I’m thankful for the gentle care that the staff at Paradigm gives to Aaron.  Their understanding, and the fact that they “get” Aaron, is a great relief to us. 

I hope that Aaron’s having a good day.  I suspect that he’ll come home happy again, full of talk of his day.  I don’t know what tomorrow will hold when it comes time to walk out the door again and face another day. 

Aaron’s greatest challenge in life is to learn how to process change…..how to transition from one way to another way.  Sometimes he surprises us.  In Houston, when we would tell him of our day’s plans, he would automatically say, “No!”  No to the beach…..no to the boat ride…..no to shopping, although we totally expected that.  But it was easier for Aaron to want to stay in his comfortable world, watching his movies at Andrea’s apartment and playing with her dogs. 

Yet when he went to the beach he loved it.  He loved the boat ride.  He endured the shopping.  And of course, he loved eating out!  I’ve reminded him of how he said no to things, and then how he really enjoyed those things once he did them.  This fact seems to mean nothing to Aaron now.  His mind is closed to this idea. 

He wants things the way he wants them.

And our job is to be patient, to not give in to his wants, to not lose our cool, and to ask God for lots of wisdom. 

If only Aaron wanted things the way I want them!! 

Yeah, I laughed at that, too. 

Our Nest

I remember being pregnant with Aaron and hearing the term “nesting.”  I wondered if that phenomenon was really true, and later discovered that it certainly was.  I had the rush of energy and the desire to get our nest in order before Aaron’s birth – and he was three weeks early!  Interesting!

I find myself considering our nest again, but now on the other end of the spectrum.  Goodness, how time flies!  And now I sound old even in just saying those timeless words about time.  I don’t really feel old, but soon our nest will be a little emptier, and I know that the years have rushed by much faster than I ever dreamed they would when I was knee high in diapers and runny noses.

Tomorrow, barring any delay, Andrea will officially be moving to her new apartment.  She’ll only be an hour away but the distance isn’t what matters.  This marks the beginning of her independent life.  She’s worked since she graduated from college, but has patiently still lived at home as she waited for the wisest opportunity to launch out on her own.  That time has come for her, and no one could be any happier for her than Gary and I are.  Yes, we’ll have the normal sadness as we watch her go, but the sadness is tempered by the happiness we feel for her.  She has a job that she’s wanted and that God put into her lap, so it seems, and now her own place.  Her patience has paid off and we believe that God has honored her.

When Aaron found out that Andrea would be moving, he was very surprised.  He blurted out, “NO MORE ANDREA??!!”  Well, kind of, Aaron………….she’ll still come to visit but no, she won’t be living here anymore.  He’ll miss her a lot, as we all will.  And she’ll miss him, too – in some ways more than others, for sure.

The nests I’ve seen around our yard, up in the trees, are all empty.  It’s the time of year for empty nests.  When I think of our nest, the Moore nest, I know that we have a different nest than many other people have.  We’re not alone in our uniqueness, certainly, but we are in the minority.  At our age, Gary and I should have an empty nest…………but when you have a child, or an adult, with special needs – sometimes the nest won’t be empty for a long time, and maybe never.

This fact hit me at some point when Aaron was entering adulthood.  Some of our friends were anticipating their own empty nests, or celebrating that fact when it occurred.  None of us dislike our children, but when the time of life comes that our children move on and we’re still young and healthy enough to be alone again – well, it’s just fun!  But as Gary and I dealt with the reality of Aaron’s needs, part of that reality that hit us square in the face was that Aaron may not leave home for a long time.

I’m not complaining and I sure hope I don’t sound whiny.  When we were first exploring what options we had for Aaron’s services, we chose an agency that would provide Aaron with a group home.  We were definitely headed in that direction…………..until one of the staff physically and verbally abused Aaron.  Gary and I considered that door shut, and so have kept Aaron at home with us.  Some day we will have to cross that bridge again, but we don’t know when that will happen.  His day group is a blessing to all of us, with an awesome staff.  But honestly, I can hardly imagine someone being able to love and understand Aaron enough to live with him, to care for him during his seizures, to know how to defuse him when he’s angry, to read his body language, and on and on.

There are some lessons that I have learned over the years in regards to our lack of an empty nest at this point in our lives. I don’t always practice what I preach, but I have learned:

1.  Do not compare myself to others!
This is a trap that I think we women fall into so easily.  I remember in our early years of marriage how I would listen when other wives told me that Gary and I should do this or go here or experience that.  I had to learn not to compare our lives with their lives.  Now as I think of Aaron being home I must also not compare our lives to those who are “free.”  God has given us this life with this situation, in His sovereignty, and to live any other way than in freedom would be defeating.

2.  Do not covet the life that others have!
     This goes along with not comparing ourselves to others, but coveting takes it one step further down that slope of sinful behaviors.  Other couples may have more time alone, more opportunity for travel, more peace and quiet, more time for their own hobbies or pursuits……..but I should never covet these things.  Coveting is purely sin!

3.  Be content!
     Paul had a lot to say about being content………….”Godliness with contentment is great gain;” and “I have learned in whatsoever state I am, therewith to be content.”  Being content is an act of my will and an act of obedience to God.

4.  Count my blessings!
I have so many reasons to be thankful and so many blessings to count, every single day!  And counting my blessings keeps my mind on positive attitudes and focuses me once again on being content.

As Andrea and I worked in her apartment the other day, we noticed the pretty tree out the front window.  It’s a Redbud and this spring it promises to provide lots of beauty for her to enjoy.  As I was working on something, Andrea said, “Look, there’s a nest in the tree.”  And sure enough, there sits a nest up in the branches of the Redbud.  What a perfect reminder that now Andrea is starting her own nest!  Her first nest is not like my first nest, but it’s a nest and will be blessed by God as she honors Him.

 

And I want to continue to honor God with the nest that God has given to Gary and me.  Our last bird may be here for a long time, but that’s OK.  What a privilege to mother our special bird!

Besides, what would I write about if not for Aaron?