Category: Adult Autism

Aaron’s Notes

I saw this on Gary’s desk the other day.

 

This note was written by Aaron, and it made me smile.  He was obviously in a happy mood that day, particularly toward Gary, and so he expressed it as he often does with a little note.  Aaron’s not being disrespectful in calling his dad by his first name.  I mean, Gary is Gary’s name, right?  Aaron knows that we try to get him to call others by their first names instead of saying, “Hey, you!”  Or just saying, “Hey!”…..and then pointing, as he did often during our recent trip to see family.  So on this day of note making, Dad was Gary….and we smile at that.

Aaron keeps copious lists of many areas of his life.  He writes down the chapter that he just finished when he stops watching a movie.  He writes down his computer game notes and stopping points.  He keeps this list of his going to bed and getting up in the morning times:

 

And this list of our Skip-Bo wins:

 

Aaron also loves his Post-It notes.  He leaves various messages in various places, like the one that he left on Gary’s desk.  Some of his messages are not so nice, though.  Like this one a couple years ago that he left on his door during a very grouchy morning.  I got that message loud and clear……and I’ll admit that I thought it was pretty funny, although I didn’t share that sentiment with Aaron.

 

He sometimes leaves me reminder notes.

 

He has left sweet notes, and sometimes not so sweet notes, to the various staff at his day group.  Here is one that Barb sent me, a note that Aaron wrote on her desk calendar.

 

But by far my favorite note is this one that he left on my desk quite awhile ago, and that I still keep there.

 

I like looking at it on bad days, especially.  It always makes me smile.

I love you, too, Aaron……sweat and all. 

A Special Vacation With Aaron

Last week Gary and I took Aaron with us on a vacation/work trip back home to our families in both West Virginia and North Carolina.  It had been way too long since Aaron had been home with us, so it was nice to have this opportunity to take him along.  One purpose of our trip was to meet with my brother and sisters in West Virginia, and to go through all the items that were left in our mother’s storage unit since her death in May.  Then we went down to Gary’s hometown in the North Carolina Smoky Mountains.  We hadn’t been there in ages, so we spent more time there than in West Virginia on this trip.

Aaron is really a good traveler, which is surprising in some ways since he loves his routine and loves his things in order.  But he also loves time with us, and he loves the snack bag that I fill before we leave, and he loves the motel, and he definitely loves eating out.  He makes sure that he nails down the fact that we ARE eating out as we hit the road bright and early on the day we leave.  When that fact is established to his liking, he then seeks to determine if we’re eating IN a restaurant.

We usually stop at this particular rest area in Kansas City, which overlooks both the Chiefs and the Royals stadiums.  Aaron was only slightly impressed with that, pausing long enough for me to take the first obligatory picture of our trip…..the first of many that he tolerated as we vacationed together.

 

He was far more impressed with the Cracker Barrel where we ate a midday meal later that first day.  He loved the stuffed turkey that he and Gary found in the gift shop, and couldn’t wait for me to press the turkey’s wing.  Aaron rubbed his hands together in delight as the turkey sang, “Hey, good lookin’, what you got cookin’?  How about cookin’ something else but me?”  We heard Aaron sing that song several times that day.  And he also played the peg game while we waited on our meal, beating Gary on his first try!

 

Our server there was so kind to Aaron, smiling at him with understanding and even bringing Aaron his very own travel map.  Several servers on this trip were that way with Aaron…..showing kindness and even delight on the unique way that Aaron interacted with them.

 

Aaron quickly set up house at John and Jeanie’s when we arrived in Princeton.  We had barely said hello before he was deciding where he would perch himself and his DVD player, looking for an outlet and not at all concerned about rearranging furniture or grabbing a chair on which to place his DVD player in front of him.  He did the same thing at his Aunt Sandra’s when we got to Bryson City on Tuesday.  Never mind unimportant hugs or pleasantries.  The most necessary business was to get himself situated and comfortable.  Hellos and hugs and small talk was for the rest of us, after we helped him line up his little corner of the world just right. 

 

Aaron really did very well in so many ways on this trip.  Of course, he had times of frustration when he didn’t want to go somewhere that we went…..or he wanted to be on my tablet looking up GI Joe videos instead of going to see friends….or he was a little tired of seeing too much pretty scenery.  We had to work a few times to try to derail him from the track of frustration that he was on for the moment without becoming totally frustrated ourselves.  Then there were his loud noises which were new to many in the family.  He sure can make people jump! 

But there were very many moments to treasure, far more than the ones that we would rather forget.  He sat in our vehicle for over five hours while we went through Mom’s storage unit, watching Looney Tunes DVDs and making tons of crazy noises.  Like Mary Beth said, he was our sound effects while we worked.  I just wonder what the family down from us thought as they worked on their unit.  He hugged family and friends, he talked all of our ears off about aliens and other interests, he kept up a weird schedule, he slept in different beds, and he tolerated hours of driving. 

Here are more pictures of some of the things that were very special during this trip.

He found a fun bug at the West Virginia rest stop.
 

He was happy to finally be in West Virginia.

 

And happy to also go to North Carolina.

 

We had a delightful visit with Leo.

 

We ate at Naber’s……TWICE!!  Look at the view right there!

 

He sang for Aunt Sandra.

 

We went walking up Deep Creek.

 

And dad helped him find some little Deep Creek rocks……

 

while Aunt Sandra found a HUGE leaf!!

 

He was happy to go see Pam and Russ after a stubborn spell that day……

 

and pet and feed the horses in the pasture beside their house!

 

 
Those are just a few of the wonderful times we had on this special trip.  On the day we left to return to Kansas, Aaron had a mild seizure while still in bed early that morning.  He had another big seizure in the car on the interstate, and a larger one that night in the hotel.  He thankfully had just gotten out of the shower before that last seizure, and was sitting up in bed reading.  He hit his head really hard on the headboard as the seizure jerked him backwards, and then on the nightstand as it threw him sideways, but thankfully he was fine.  God was good to protect him, and to let him have a full week of fun and family before that seizure hit. 

It was a reminder of how fragile he really is in some ways, physically, and of how tough he is as he rebounds despite a sore head and a bitten tongue and not being able to taste food the next morning.  It jerks Gary and I back to reality, but also causes us to be thankful for every good day and special memory during our family trip. 

It may not always be easy to have Aaron come along, but it’s always worthwhile to have him along with us…..not just on this trip, but along this journey of life together with our special son. 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

It’s My Choice

“I am NOT going to Paradigm today!!” Aaron yelled at me. 

Here we go, I thought.  This will be one of those mornings.  And it was.  It all happened last Friday.  I’m not even sure what set Aaron on that anger path, but he was on it for sure with no apparent sign that he would exit anytime soon. 

“Go away from me!” he loudly said. 

Yet he kept coming into my room while I got ready, standing there telling me angrily that he wasn’t going to his day group.  But he knew the consequences of that decision without me uttering a word.  No Friday pizza.  He was in quite the dilemma as he stood there asserting himself, knowing that the further he dug his own hole, the further away he would be from his pizza supper.  Plus I wasn’t responding back to him the way he wanted.  He wanted anger from me, which would only feed his anger.  Aaron was ready for a verbal fight, and Mom wasn’t cooperating.  I stayed as calm as possible while still being firm, even though I wanted to yell every bit as loud as he was. 

Finally Aaron stomped away, walking up the hall to his room.  And then I heard it.  Aaron threw something up the hall, where it landed on the floor outside of my bedroom.  I knew what it was without looking.  It was his watch…..his broken wrist watch.  He had broken it at Paradigm almost two weeks earlier, although the details are still unclear. Nevertheless, it was broken and I didn’t replace it immediately.  So on this anger morning, Aaron decided to focus his anger on his broken watch….demanding a new one once again and complaining about how much he needed his watch. 

Aaron could tell that I was getting ready to leave the house, with or without him.  “OK!!  I’ll go, if you’re going to MAKE me!!” he said, dripping with frustration.  I silently went to the van, where he followed me and then stopped.

“Wait!” he said.  “I have to get my watch.”

He went back into the house and retrieved his broken watch, stuffing it in his pocket.  He couldn’t wear it on his arm, but every day he had put it in his pocket and taken it with him anyway.  Today was no different.  We were mostly silent on the way to Paradigm.  It was later than usual.  Aaron was sullen and still steaming.  I was deflated and tired. 

Earlier, as my friend Atha and I texted, I had said to her, “There are times I truly wish for a normal life.”  I always feel guilty after expressing myself that way, for I know that this life is what God has somehow allowed me to have.  I want to be like Esther, who came to realize that God in His sovereignty had put her in the place she was for that particular time.  Yet sometimes the place of us special needs moms seems to just be a place of frustration and dreary sameness.  We do get tired, especially on the angry days such as I was having with Aaron.

He got out of the van, still irate but somewhat calmer.  I just drove away, weary.  But I thought about Aaron with his broken watch in his pocket, carrying it with him all that day.  He also carries something else with him, something that often feels broken.  My heart and spirit.  A mother is a mother, forever changed by the children that carry part of her with them for the rest of their lives.  Aaron isn’t the broken one, but I often am.  I need God’s grace and strength so many times on this road, and He never fails me.  But I still feel the pain in my heart, my heart that Aaron unknowingly carries with him…..tucked away, just like his broken watch.

 
Later, I walked in the house and my eyes were drawn to a very little porcelain figure perched on top of our DVD player.  Aaron and I had set it there a couple weeks earlier.  I thought of the story told by that little figure, the love it represents.

Aaron had been to the zoo on Friday of that week.  He came home, excited to tell me about his favorite animals that he saw.  When I asked him if he had bought anything to eat, he told me that he had not bought any food but had instead bought something for me.  But with regret he told me that he had left it at Paradigm. 

“I can’t tell you what it is, Mom!” he exclaimed.  “It’s a surprise!!”

So when I took him to Paradigm after the weekend, on Monday, he was very excited for me to come inside with him so that he could hopefully locate his surprise for me.  He barreled into Barb’s office with me in tow, and Barb immediately pulled out of her desk a small brown bag from the zoo.  Aaron couldn’t wait for me to open it as he handed it to me.  And there inside the bag, wrapped in bubble wrap, was….well, what was it?  It was so tiny that I couldn’t exactly tell.  Aaron was rubbing his hands together as I gingerly pulled out a little porcelain zebra.  Why a zebra?  I have no idea.  But I loved it.  I loved the fact that Aaron had spent all of his money on Mom…..even though I worried that he went hungry.  What a special, loving gift from my son!

Now it sits on top of our DVD player, where it’s mostly safe from being broken.  You can hardly see it from across the room, it’s so little.  But the joy on Aaron’s face when I opened it was huge, and so was the joy in my heart. 

My heart, like all mom’s, holds at times great joy and then at times great hurt.  As with every situation in my life, then, I have a choice to make.  I can’t ignore the hurt forever and I can’t capture the joy forever.  We all experience both.  But I can choose which to dwell on the most. 

I can linger on the brokenness and carry it with me, like the watch in Aaron’s pocket as he carried it there day after day.  Or I can choose to see the beauty, hard as it may be, that does often surround me in my life with Aaron.  Brokenness or beauty…..it’s my choice.  In every area of life, that choice is mine to consciously make.  As I deal with Aaron, it’s also a decision I must choose. 

Will I see Aaron as a blessing?  Or will I see Aaron as a burden?  Will I allow my grumbles and sighing and my desire sometimes for a “normal” life rule my thoughts?  Or will I pull back, take a breath and pray to my heavenly Father, and then choose to see the blessings?  Even at the end of the day, if all I can say is, “Well, at least Aaron and I are both still alive.”  Hey, I’ll take it!  It’s a blessing!!

On that angry Friday, that tiny zebra reminded me that I do have many blessings and joys in this life with Aaron.  Sometimes they’re harder to see than at other times.  Sometimes my spirit is very frustrated and tired…..but so is everyone.  Really, we all experience plenty of both in our lives. 
 

What will it be? 

Brokenness…..or beauty?

Burden……or blessing?

A text from Atha this morning was perfect:  “Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name.  For the Lord is good and His love endures forever; His faithfulness continues through all generations.”

 

 

Tired of Love?

Some of you have been asking about how Aaron is doing.  We don’t really know how his sodium levels are holding right now.  We need to have more blood work done to find that out.  He’s drinking less water than he used to drink, but probably still more than the doctor would want him to have.  We’re just doing the best we can do there.  Let’s just say that he does NOT take kindly to having his fluids restricted.  Some days and moments are harder than others.  Much of it depends on his mood.  Much of everything depends on his mood, actually.

One day his friend at Paradigm gave Aaron some food.  I was a little leery of this idea, so I told Aaron that he probably shouldn’t be eating food offered to him like that. 

“You’re saying I can’t have WATER, and now you’re saying I can’t have – like – FOOD?!” he exclaimed.

He lives a tough life, let me tell you.  A very tough life.

Aaron loves listening to CDs when we drive to his day group, unless he’s having a grouchy day.  Then he punishes me by saying he doesn’t want to listen to any music.  Anyway, we had listened to an instrumental CD and I guess it wasn’t his favorite.  The next day he said, “Will you get a CD where they’re singing in WORDS?”  Ok, ok.  So we I picked out an Olivia Newton John CD, one where she’s singing her old songs.  Aaron listened quietly.

Finally he said, “Mom, I noticed something.  She just sings about love.”

“Is that OK?” I asked.

“Well, it’s weird,” he answered.  “Music companies today don’t just sing about love.”

He’s right about that.

The next day we turned on the same CD, and it began where we had turned it off the day before.  Again, Aaron listened quietly for a couple minutes.  Then he flatly said, “I’m getting tired of love.”

I did laugh out loud at that one.  Come on, Aaron.  We never get tired of love! 

So to finish this, I’ll just show you some pictures of Aaron and of how he loves, and IS loved, every day.  And of how he’s funny, too!

He found a turtle down in the grass in our back yard, so Gary helped him turn it loose in the lake behind our house.  Aaron was so happy with that turtle and didn’t want to give him up, but he was happy to know that the turtle was very happy to finally go to his home. 

 

We went to see The Minions with Rosa and her mom, Louise.  Rosa asked her mom if she could go to a movie with Aaron, which was so sweet.  And the loudest I heard Rosa laugh was when they were walking out through the lobby and Rosa took a drink of her Diet Coke.  Aaron loudly said, “Is that BEER??!!”  And they laughed and laughed, while Aaron rubbed his hands together. 
 

 

Aaron went with me to get dog food at the vet.  Aaron loves getting to see the resident cat, Kato.  Patient, patient Kato. 

 

Aaron has offered to help me clean garden veggies several times.

 

And he thinks it’s so funny to always do this at least once when he eats a peach.

 

I think it’s funny that he often wears his socks with the heel part on top, no matter how many times I tell him that the gray part belongs on his heel.  He totally doesn’t care.

 

He does care about testing plants when we go into different buildings.  He showed me this piece of a leaf after we left the doctor’s office.  He now knows that his test proved that the plant is real.  Sigh.

 

We have eaten out several times on doctor visit days, which is really why Aaron goes with me on doctor visit days.  He doesn’t care at all about seeing the doctor.  It’s his restaurant of choice that fills his thoughts. 

Aaron thought it was funny to be in a huge booth, far apart.
 

One of his friends gave him a Krispie Kreme hat, so Aaron proudly wore it for a short time.  Hats are not his favorite.  Neither are donuts.  Can you believe that?

 

Life with Aaron is never dull.  And he’s always loved, even when he’s tired of love.  

And when he’s not always easy to love.  That happens, too.  I have a picture of his broken watch, but that will be for another time.

Today we sing about love.

 

 

 

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!!!

 

 

 

 

Embarrassments

We all know the famous Browning poem, “How Do I Love Thee?”  Well, I have some thoughts about Aaron, but the title would be “How Do I Embarrass Thee?” As in, how does Aaron embarrass me?  Being a southern mama, I would add, “Bless his heart.”  And you can take that any way you want.  We southern girls certainly know how to do that. 

            You know I love Aaron with all of my heart.

            You know I love Aaron, every part.

            But oh, how embarrassing he can be.

            So today I have a story of three.

OK, I’m no Browning……bless my heart. 

Anyway, today was dental cleaning day for Aaron, so we took off this morning for our beautiful drive north through the country.  We drove up 135th street to 53rd, for you local folk, as we headed to the town of Maize and to our dentist’s office there.  Aaron was enjoying his day off as we drove by cows and horses and goats and one field of critters that I couldn’t identify.  He was really loving the oldies CD that we listened to, and hearing the fact that these were songs from my high school days. 

Aaron didn’t have time to enjoy the waiting room where he likes to talk to Lee, the receptionist.  He was immediately called back for his cleaning.  I had urged him to be patient and polite, character traits that run short for him sometimes in the dentist’s chair.  And when he walked out about 40 minutes later, I heard him before I saw him.

“Mom!” he said.  I could tell just from the sound of his voice that he was exasperated.  “Let’s go now!” he demanded as he walked into the waiting room.  I could tell from the wild look in his eyes that he was upset.  Oh dear.  So as I checked out and made his new appointment, the hygienist was able to whisper that he was more upset than usual today.  He even told her to shut up at one point…..or maybe more than one point.  He was just rude and belligerent to her.  He doesn’t like the cleanings…..he doesn’t like the feel of it and the time it takes……and he doesn’t like being told over and over to hold his mouth open and to loosen his steel-like lower lip.  And of all things, we go every two months to the dentist for cleanings because of how Aaron doesn’t brush well enough. 

I was embarrassed.  I know the staff there understands as best they can, but it’s hard to be the mom at that moment….no matter how old my “child” is.  I know that I will always be dealing with these red-faced moments, and I know there is a legitimate reason why, but it’s still just….embarrassing.  As Aaron and I drove away, I gave him a lecture.  He doesn’t do lectures, I know, but I still try.  I filled my lecture with talk and examples and reasonable comments to which I felt he could relate.  I was still somewhat lecturing as we walked into Menards for a quick stop.  As we walked up the long middle aisle, Aaron was lagging behind.  Finally he said, “Mom!  You keep talking about mad things!”

So I knew it was time to stop.  Enough talking about mad things.  What’s done was done, and I hoped that some of what happened and what I said had made an impression on Aaron.  Yet Aaron lives in the moment, so permanent change is doubtful.  The next moment in the dentist’s chair may still cause frustration for Aaron.   Anyway, the dentist was my first story of embarrassment today.

Number two – Pizza Hut.  Aaron and I love the Pizza Hut not far from the dentist’s office.  It’s fairly new and it has a nice lunch buffet.  Aaron loves anywhere that has an all-you-can-eat buffet, because all-you-can-eat is a meal made in heaven for Aaron.  He does get my money’s worth!  But buffets, where Aaron gets up and down, and is in front of people as he does so, can sometimes max out my embarrassment quota.  I can understand when he’s awkward and spills the salad bar cheese on the counter.  I often go with him in order to help him hold his plate straight and steady.  Pizza sliding off his plate onto the floor has taught me that lesson.  I can understand and deal with that, too.

 
But good old Aaron is so happy and relaxed because of the all-you-can eat reality that he will sometimes break out in song.  He did that today as he went up to the buffet for what I told him would be his last time.  He was remembering the last song we heard on the oldies CD as we parked outside.  I had stayed in our booth near the buffet and just watched him as he put two more pieces of pizza on his plate, and as many breadsticks as would fit.  Then suddenly he broke out into, “Oh, there’s magic….”  Several times, as I watched.  And then some passing gas noises.  I just sat there and savored the moment.  The table of construction guys must have, as well.  I didn’t look.  

Aaron sat down and started talking, loudly, so I did the “Ssshhhh” thing for the umpteenth time.  “It’s always, sshhhh!” he complained to me.  And I told him it’s because he’s always NOT “ssshhhhing” when he should be “ssshhhhing!”  I looked down for a few seconds and looked up to find him with both arms straight up in the air, flashing the peace sign with a look of purpose on his face. 

“Aaron, arms down,” I said with resignation.  At least he was quiet.  Peace.  Until we were leaving.  I had paid the bill, and as I turned to leave, Aaron turned back to the buffet…..where he reached in and grabbed one more bread stick with his FINGERS!!!!  He had me talking about mad things again as I hurried him out the door. 

Number three place of embarrassment – Great Clips, of course.  A new girl cut his hair, and today Aaron talked non-stop to her.  He told her about his scraped arm, his day group, robots, aliens, movies, and what he had done that morning.  “Going to the dentist is not my thing!” he informed her.  And of course, he had to tell her about his room being painted. 

“Do you know what happened on Saturday?” he asked her, sort of breathlessly, as if it was a major and unusual event.  She told him she didn’t know what happened on Saturday.

“This man came to my house,” he continued.  “And he painted my whole wall!” he finished.  Like he would paint only part of it?  I smiled and the new hairdresser smiled, and everyone there was hearing all of this……aliens, robots, disliked dentist visits, and painted walls.  All of it, clearly heard throughout the shop. 

Including his parting words to the nice hairdresser as we stood at the counter to pay.  “Do you like oldies?” he asked her.  “My mom and I are listening to oldies.  Mom said those were songs she knew in high school.  That’s when Mom was young.  She USED to be young.” 

The girl politely smiled, not sure of what to say with Aaron’s “USED to be young” mom standing right there.  Aaron continued.  “Yeah, mom knows those songs.  She USED to be young.”  So then the very composed, somber older lady in the waiting area burst out laughing.  So did I.  May as well.  And as I herded Aaron toward the door, I told this woman that at least Aaron wasn’t discussing my weight.  He’s been known to do that, too. 

You know, there is good embarrassment and there is bad embarrassment.  Aaron’s behaviors, such as he showed to his hygienist today, are a bad embarrassment that makes me feel frustrated and sometimes humiliated.  Aaron’s good embarrassment when he’s singing at the buffet, flashing the peace sign for all to see, or talking about his mom who USED to be young, can still redden my face.  But it’s all fun in the way that Aaron makes it funny.  He makes us laugh, even as we may try to hide.  I can let it ruin my day because of the embarrassment, or I can let it make my day.  I can choose to enjoy Aaron, or I can choose to always be frustrated. 

Sometimes Aaron needs for me to talk about mad things as I try to help him grow and be appropriate.  But many times, I just need to relish the unique person that Aaron is and not let my embarrassment let me miss these special moments with the joy that they can hold. 

It’s magic, if I allow it to be. 

Reminds me of a song I knew when I USED to be young.

 

Unto The Least: A Man Named Richard

 

I remember him so well.  Richard……….nondescript, uneducated, stinky, and often unwelcome Richard.  Our paths crossed because Richard attended the same church where I grew up and where I worshipped.  Our paths also crossed because God ordained it to be so.  God ordained it to be so………so that I would learn a lesson.   It was a lesson best taught by the method that God loves to use – the weak things of the world confounding the mighty. 

 

Richard was a very short little man.  I often think that he was our version of Zaccheaus there in Princeton, West Virginia where I was raised.  Richard didn’t have much education and he was also very simple minded.  Today I’m sure he would be classified as being developmentally delayed, at the very least.  Yet he had served our country in World War 2, returning to Princeton when his time was up.  I remember hearing the story of how Richard wanted to help build the parsonage for our pastor at Johnston Chapel Baptist Church.  The men decided that Richard could dig the sidewalk, and so they used twine and little posts to outline the walkway that Richard should dig.  As Richard dug, his shovel cut the twine and it veered off to the side……..and Richard continued to follow the twine with his digging.  I’m not sure if the men let Richard dig anymore after that or if they found another safer job for him to do. 

 

I remember Mom and Dad loading us five kids into the old station wagon and then leaving for church.  We never missed a service unless we had a fever or were throwing up, or maybe if blood was involved.  This was in the day of services every Sunday morning, Sunday night, Wednesday night, and anything in between.  This was also in the day of revival services that lasted at least a week, and sometimes longer if the Spirit led.  There were mission conferences, too, as well as other special services thrown in here and there.  The Kings did not miss church.  If Dad was working, then Mom loaded the station wagon and off we went. 

 

I loved going to church, but I always dreaded that drive up Thorn Street because often we would see him………..Richard, standing on one of the corners of Thorn Street, not far from his house.  Richard, standing there waiting for a ride to church from one of the church members that he knew would drive by in our little town and see him, and offer him that ride.  Richard, whom I was sure never, ever, ever took a bath.   The smell was just awful!  We kids would strain our necks to look ahead to see if he was still standing there, hoping against hope that some other family had come by before us and picked Richard up.  If we saw him, we would beg Mom or Dad not to stop for him………..to let someone else have that privilege on this day. 

 

But no……..Mom and Dad would always stop for Richard.  He would hop in our already crowded car and immediately we would be assaulted by that odor.  We girls learned a trick.  We would take a small purse-size container of perfume and try to hide it in our hand as we held it up to our nose.  Or at least have some perfume on our wrists that we could sniff in the hopes of blocking out that smell.  I’m not sure what John did to combat the odor but at that point it was each King for himself.   If no one was able to give Richard a ride, then he would walk to church, regardless of the weather……and that was probably a five mile walk.

 

Richard would talk, talk, talk.  He had a very fast, clipped speech.  I can still hear him make a comment and then say, “Isn’t that right?  Huh?  Isn’t that right?”  Then he would laugh and launch into something else, and ask again if that was right.  If he wasn’t talking, he was making a clicking sound with his tongue, as if he was getting food out from between his teeth.  He probably was, since I also doubted that Richard ever, ever brushed his teeth……….which just added to his unique smell. 

 

At church, Richard would lean up on the pew in front of him and talk to whomever was sitting there.  His eyes would dart between the people as he rapidly talked, and clicked his tongue, and laughed, and said, “Isn’t that right?   Huh?  Isn’t that right?”  The large church helped to spread his odor out some and keep it from being as strong……….unless you were the fortunate ones who were sitting in front of him and with whom he decided to engage in his mostly one-sided conversation.   Needless to say, when I was older and had the opportunity to sit in front of Richard……….I tried to find another seat.

 

Richard, though, was good at math.  I remember how that always surprised me.  On Wednesday nights, four men would count certain sections of church and then give the number to the pastor out loud as they were called upon to do so.  Richard almost always added those numbers faster in his head than Preacher Jimmie could do on paper, and he was usually right.  Amazing indeed!  And also amazing was the fact that Richard loved the Lord in his own simple way and was one of the most faithful church members that I have ever known.    I don’t remember seeing Richard carry a Bible and don’t know if he could read, but he knew his Bible.

 

Time marched on.  We King kids grew up, went to college, married and had our own lives.  Mom and Dad both eventually retired from their jobs.  They continued to be active at Johnston Chapel, enjoying the freedom to spend more time visiting the sick and those who were shut-ins.  Among those that they cared for, none stood out more to me than their continued care of Richard.  He had aged, of course, and time had taken a toll.  Richard was not only feebler, but was also dealing with the ravages of cancer.

 

I know that others helped with Richard, too, but Mom and Dad did a great deal for him in his old age.  They helped him find a better house to move into, and then helped him move his meager belongings.  They were shocked at what they found as they cleaned his house.  Such filth was hard for them to imagine!  And there in his closets and throughout his house were stacks of Christmas presents that church friends had given him over the years, still wrapped and unopened.   Inside were clothes and toiletries that he surely could have used over the years, but when questioned about it Richard said that he didn’t open them because he didn’t need anything.  Mom and Dad bought him clean clothes and new things, but Richard still preferred his old belongings and his old way of living.  Mom would take him home-cooked food and encourage him to eat better than he was.  She and Dad bought him a small refrigerator to keep his food from spoiling, but Richard refused to plug it in because he didn’t want to waste electricity. 

 

Dad helped Richard obtain his VA benefits, and then made sure that Richard started going to the proper doctors at the VA hospital.  He took Richard for many of his doctor appointments.  This was no easy task in many ways, but none more so than just the pure embarrassment of being in a public waiting room and doctor’s office with poor smelly Richard.  Mom and Dad tried countless times to teach Richard and to urge Richard to use better hygiene, but I don’t know that Richard ever took it to heart.  Dad would explain things to the doctor, but the people around them that they encountered must have wondered about Richard and about Dad.  Eventually Richard’s cancer became more complicated than what the local VA hospital could handle, so Dad took him to the nearest major VA hospital………..in Richmond……….a six hour trip one way.  Twelve hours confined in a car with Richard, as well as the time at the doctor appointments.  The smell……..the constant talking……….the clicking tongue.   Yet Dad just smiled and did what he knew that God would want him to do………..to take care of this little unwanted and unwelcome man. 

 

When Dad tried to see if Richard qualified for any other assistance such as Medicaid, it was discovered that Richard had money.  In fact, he had too much money to qualify for any government help.  Richard never offered to give Mom and Dad, or anyone else, any money for the things they did for him.  They wouldn’t have taken the money anyway.   That was not the motive.  A brother that no one knew about showed up at Richard’s death, and Mom and Dad walked quietly away from any further involvement……..but not before they gave Richard one of their burial plots since he didn’t have anywhere to be buried.

 

Mom and Dad didn’t want any public acclaim for what they did for Richard.  They just loved the Lord and they let the Lord’s love fill their hearts and direct their actions.  I know at times their service to Richard was tiring, was frustrating, was annoying, and very thankless.  Yet Mom and Dad, and the others who served Richard, did so because they lived out their faith and they believed Jesus when He said, “When you do it unto the least of these, you do it unto me.” 

 

Dad is with Richard in heaven now.   I sometimes try to imagine it, the two of them together up there.  Both have new bodies and are totally equal physically and mentally.  Did they hug when they saw each other?  Are they ever beside each other as they sing and as they worship?  Richard doesn’t smell anymore and Dad doesn’t have to explain him to anybody, or be embarrassed.  I wonder if Richard still talks fast, and does Dad still smile patiently at him?  I doubt it, but it’s fun to think about. 

 

And we kids are left with not only memories, but more importantly, we are left with a real example of selflessness that my parents demonstrated.  They loved the unlovely in more than word…………they loved also in deed.  I know that each of us has taken this lesson to heart in our own lives in various ways.  But I doubt that anyone could be any more kind and any more patient than my sweet parents were to Richard.

 

I can’t wait to see Richard in heaven!  I’ll give him a hug……….and no perfume bottle needed!

 

 

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.