Category: Adult Autism

The Diversion

I was outside on the patio this morning with my cup of coffee, talking to a friend on the phone, when the patio door opened and there was Aaron……….showered, dressed, shoes on……..Wow!!  He pulled out a patio chair and sat beside me, staring down at my feet.  He stared and stared while I finished my phone conversation.  I hung up the phone, looked at Aaron, and wished him a very good morning. 

“I don’t like your foot color thing,” he replied. 

“What?” I laughingly asked. 

“That painting on your feet,” he continued.  I laughed again.  No good morning from Aaron in return for my greeting, but only a precise and blunt commentary on my feet.  “You don’t like the polish on my toes?” I asked in fake disbelief.

“No,” he flatly replied.  My dark pink polish may have looked blue to Aaron since he’s color blind, but when I asked him what color my toes were he said they were a “kind of pink.”  And with his disapproval of my toes established, we went inside……..where I poured his coffee and then went up to get myself ready while Aaron drank his coffee and read the comics.

Aaron had a perfect morning relaxing in the mulch until it was time to go.  He was in a very happy mood today.  We passed the cow pasture and there out in the distance were the cows that he loves to see.  Some days they’re not anywhere in sight and Aaron wonders about that.  One day he didn’t see the cows and he said, “Where are the cows?  Maybe they’ve been turned into meat!”  But today the cows were there and Aaron was glad.

Picture from Beth Hite

It wasn’t long before Aaron brought up the subject of Rosie.  He talked again about how they held hands……..several times, according to Aaron……..and how he liked that.  Then he said, “I could tell she almost put it as I was her boyfriend.” 

He couldn’t quite explain what he meant by that, so he continued.  “If she had said I was her boyfriend, I would have said that I don’t want to get married right now.” 

I told Aaron that he and Rosie can be good friends.  I said that they can even call each other boyfriend and girlfriend if they want………but it doesn’t mean that they will get married.  I encouraged him, as I have done so often, to just enjoy being good friends.

“So how long did it take you and Dad?” he asked.  I knew what he meant, but I asked anyway.  “How long did it take Dad and I to get married?” I asked.  He said yes, and so I paused before telling him that it took a year and a half. 

Now I wonder if Aaron is counting up a year and a half from now to see when he might need to get married.  I reminded him that having this special relationship with Rosie does NOT mean that they must marry.  I do believe that Aaron is feeling like a boyfriend/girlfriend connection is the precursor to sure marriage…….and he’s feeling some pressure.  What both sets of parents want, believe me, is for Rosie and Aaron to continue being special friends.  Period.

And in true Aaron fashion, as we drove by the field where bulls graze, Aaron quickly went from talk of hand-holding and marriage to talk of bulls.  “You don’t eat bulls,” he blurted.    I said, “What?!” 

“You don’t eat bulls!” he repeated.  “Cows are hamburger but bulls are nothing!”

Picture from Beth Hite
I laughed, both from the humor of what he said and from relief to have left this marriage talk.  I’m no cow or bull authority, so I didn’t try to expound on what he said.  I was just thankful for the diversion that the cows and bulls had given Aaron, and not in the way you might think.

I have to laugh, really.  I just have to laugh, and wait for the door to burst open today to see what else Aaron wants to talk about.

Stay tuned.

What Rosie Did

It was almost two years ago that I first wrote about Aaron and his special friend, Rosie.  Since then I have written several more times about their very special friendship.  Aaron and Rosie continue to have a sweet relationship……one that we can’t quite define but one that is unique to them.  Aaron is kind to Rosie, at least as far as we know.  He still likes to take Rosie things,  and to share food or money with her.  We’ve been working with him to come up with other ideas of items to take to Rosie….things like pictures from the movie Cars that we print from the computer, or baby carrots instead of chips, or apples instead of Nutty Bars.  Just the other day, after cleaning out a drawer in what used to be our home school room, I found three crayons.  Aaron was very happy to take those three crayons to Rosie the next day…….because Rosie loves crayons.  And Aaron has already taken her every crayon that we own…..or so we thought.  I think these last three should be it!


We’ve met Rosie’s parents and we’ve talked some about their friendship.  We’re all very delighted for them to have each other.  We don’t want to discourage them in any way, but I believe I can safely say that we just want them to remain as special friends.  Aaron, though, has been observing some things and connecting some dots.  Some days I feel like the ice we’re stepping on may be getting a little thin. 

Some of his comments are funny…..like the night we went to watch the Fourth of July fireworks.  The next day, Aaron said, “Mom, I saw a boyfriend and a girlfriend last night.”  I asked him how he knew that they were boyfriend and girlfriend, and he replied, “Well, they were acting strange.”  He couldn’t describe to me what he meant by that statement, and I was trying like everything to remember who was sitting near us and how they were acting……..but all I could come up with was a cute couple who sat near us and who were sweetly snuggling some.  To Aaron that was strange?  Maybe that’s really a good thing for him to think that way, right?

One evening as he and I walked around our circle,  Aaron once again mentioned Rosie.  He seemed burdened as he mentioned her and then again as he said something about whether or not he was her boyfriend.  I asked him if he wanted to be her boyfriend and he answered, “Well……kind of.  But then I have to think about marriage and that’s hard.”

I nearly stopped dead in my tracks as my mind was swirling, trying to think of what to say to him that would neither condemn nor condone this new word he was saying…….GULP!!……..marriage!!   He continued.  “Was it hard for you and Dad to think about marriage?”  I mean, how do you answer that question to this boy/man who is trying to figure out all this relationship stuff?   I stumbled through something about how it’s hard to know that you should marry this person, and is this person the right one, and that being friends is great,  and I don’t know what else I said………and Aaron asked what I meant………and I just said it’s very hard to explain.  So, yes, it’s very hard to think about marriage.  When we got home, I much-more-calmly-than-I-felt sat down and talked to Gary about it.  He just shook his head and looked as helpless as I felt.  

Aaron doesn’t even understand what marriage really means.  He just knows that when two people, like Mom and Dad, became good friends………and then even better friends………and then very good friends……that they got married.  Connect the dots……one, two, three, four…..

Today Aaron was giving me his usual run-down of his day…..where they went and what he ate and what he did.  He told me that Rosie was sitting beside him in the van.  Aaron’s voice got very soft as he said, “Mom, do you know what Rosie did?”  Then Aaron leaned down toward me as I sat in my computer chair.  He reached for my hand and I nearly flinched, because Aaron loves to take our hands and roughly squeeze them.  But I didn’t move as Aaron very gently took my hand and held it.  “Rosie did this,” he said as he continued to sweetly hold my hand…….like a couple would do.  Oh my.  It was a tender moment, but I knew that it was really a tender moment between Aaron and Rosie, just being demonstrated to good old Mom.

“Did you like that, Aaron?” I softly asked him.   “Yeah,” he softly answered.  And that was it.  He soon lumbered upstairs to change clothes and start his evening.  I sat still for a minute, transfixed over that moment……how sweet it was, how tender……..and how much it says about Rosie and Aaron.  Holding hands was not lost on Aaron.  It meant something to him, deeply……not physically but even deeper, in his heart.  We don’t want to dismiss that for Aaron.  I don’t think we could if we tried.  We love this joy that he and Rosie seem to have together – this special bond that they share.

I have a feeling, though, that when Andrea or Andrew get married someday……….we’re gonna have a whole lot of questions to answer from Aaron as he connects even more dots.  I never dreamed this would ever be a concern for us with Aaron, but here we are……….maybe. 

I still think God sent an instruction manual with Aaron, surely.  I just wish I hadn’t misplaced it.    

A Grown-Up Man?

Last night Aaron had asked if he could have pancakes for breakfast the next morning, so after my shower this morning I opened my door and went to Aaron’s bedroom to tell him that his wish was about to come true.  I was going to fix pancakes.  But Aaron’s room was empty, though his bed was made, and so I went downstairs to find him.  Upon walking into the kitchen, this is what I found.

There were his shorts in a heap on the floor, looking as if he had just slipped them off and left them there………which he had.  I looked around for him, but there was no sign of Aaron.  I went upstairs, wondering if he was hiding in his closet like he has done before.  No, still no Aaron in his closet or in any other closest or under a bed.  I looked outside, thinking he must be in the mulch, but all his mulch or twig sites were empty. 

I went ahead and got his pancakes started before checking all the downstairs areas, including our two storage rooms.  All were empty of Aaron.  Now I was starting to get a little concerned.  I called for him and told him that I was fixing pancakes, but the house was silent.  Back outside I went, calling his name, but there was no answer.  I went over to the side of the house where he had been sitting by the trees last week, and when I looked on the other side of the trees, there he was!  His back was to me, and his bland clothes didn’t stand out, so he was hard to see.

I called to him again, and he finally answered.  “I didn’t think you’d see me!” he happily said.  He had no idea that I was getting a little frazzled.  He got up immediately when I told him that his pancakes were ready.  He reminded me of a young child as he was obviously pleased with his good job of hiding, and excited as he anticipated his fresh, hot pancakes that were waiting for him.

He put his mulch trash can back in the garage and then washed his hands thoroughly before he came to the table, stepping over his dropped shorts.  He explained to me that those were the pair of shorts that were hard to button, so he had just dropped them there and put on his shorts from yesterday.  I left him to eat his pancakes and went back upstairs to finish getting ready, where he later joined me.  His denim shorts were back on as he walked into my room, holding them together at his waist and carrying his belt that he needed me to help him thread through his belt loops.  I helped him button the shorts and get on his belt, and then he handed me one of his tennis shoes that he wanted me to untie and retie after he slipped it on his foot.

All the while, he was telling me about eating five pancakes but leaving the others on the plate, and wondering if Jackson could have the ones he didn’t eat……….and if it was OK that he let Jackson eat the crumbs that were on the floor.  I wondered if the crumbs were more like bite-sized chunks that he conveniently left on the floor for his dog buddy to eat, but knowing I wouldn’t get an accurate answer I just left that unsaid.  I agreed that we could take Jackson with us for our drive to meet Aaron’s group, so off we headed for the van……..after Aaron made sure that I put in his computer keyboard.  As we passed the kitchen table, I saw Aaron’s empty plate and then the pile of untouched silverware there on the side.  I always shake my head at Aaron’s need of multiple pieces of silverware, no matter what he eats.  It’s like a security blanket for him, always necessary but rarely ever needed.

He grabbed two bottles of water and hopped in the van, with Jackson sitting on the back seat and music soon playing from the CD that I inserted……..and that Aaron examined and then approved.   Soon he said, “Mom?  Last night at 11:01 I saw lightning.”  

“Really?” I asked.  “So what time was it?”  I love his precise time-giving, and he did not disappoint me.  “It was at 11:01,” he repeated.  “And it scared me!”  So we talked about why the lightning scared him………him saying that he didn’t know it was going to lightning.  Last night was one of those nights that he didn’t check on the weather and the outside temperature before going to bed, so I guess that explained his surprise at the lightning.  I imagine that tonight he will remember to do his routine weather check before he closes his door to go to bed.
 
Then as he so often does, Aaron took a sharp verbal turn and for whatever reason he said, “Mom, yesterday I saw a man at McDonald’s who had a beard like this.”

  I looked over at him and he was making the motion of a long, skinny beard coming down from his chin.   Aaron continued, “I thought he would get food in that long beard!”  And then…..”He wasn’t an old man but he was a grown-up man!” 


I laughed, and thought as Jackson and I drove home about Aaron not being an old man……….but is he a grown-up man?  In some ways yes, but in many ways no.  There he was this morning, playing his hiding game and loving his pancakes and trying to feed the dog and needing help with his buttoning and his belt and one of his shoes.  We have some work to do to help Aaron be more of a grown-up man, but some things about him will probably never change.  He will always think that hiding from Mom is fun sometimes, and that secretly feeding the dog is great, and that unexpected lightning at 11:01 is a little scary. 

It’s all a part of fun and frustrating Aaron, and part of the balancing act that parents like Gary and I face every day.  I’m thankful that we can have Aaron with us at this stage of his life, and I also know that we must prepare him for the time that he will need to be very grown-up and learn to live somewhere else. 

And that is like the unexpected lightning…….a little scary.  Makes me want to grab Aaron’s trash can and go hide behind that tree he was using this morning!  But I can’t and I shouldn’t, so Gary and I will someday face that time together – I hope – and certainly with the Lord by our side.       

Clothes…….and Shoes…….and Clothes

Like any of us, Aaron has preferences in his life.  He has preferences about what he eats, for instance.  Take chicken……….Aaron has gotten so he will only eat boneless chicken.  When he knows that I’m fixing chicken here at home, he always asks if it is boneless.  If it’s not boneless, then he wants the meat cut off the bone.  He doesn’t like to get his hands messy by picking up the chicken, and he’s very awkward with a knife and fork, so I understand why he wants the chicken cut off the bone……or why he likes to just keep it easy and have boneless chicken. 

He came home from Paradigm the other day and clomped upstairs to find me.  “Mom!” he exclaimed.  “Guess where we went today?” 

He didn’t really want me to guess, because he launched right on with his story.  “We went to Church’s Chicken!!”  He asked me if I have been to Church’s Chicken, and then told me that he had eaten boneless chicken……..of course! 

Yes, Aaron, I know how you love boneless chicken!  And he asked, “Mom, do you want chicken that has bones?”

I told him that I do like chicken that has bones, and then I asked, “So do you want chicken that has bones, Aaron?”

“No!!” he replied.  “I cough on them!!”

I started explaining once again that he doesn’t need to EAT the bones, but he was already telling me where else they had been that day.  “Mom!  We also went to TJ Maxx!”

Now I know Aaron and I knew that TJ Maxx was probably not his favorite store.  Aaron will go shopping with us at the drop of a hat if he knows we are going to Wal-Mart…..Dillon’s…..Aldi……Target…………definitely CD Tradepost……….even Lowes or Menards or Ace Hardware with Dad.   I doubted, though, that TJ Maxx would interest him, and I was right.

He continued, “I didn’t really like TJ Maxx.  It’s just a clothes place.”

I told him that they have other things there, too, and he asked, “Like what?”

I quickly racked my brain to think of some of those other things that TJ Maxx has that Aaron would like as he stood there staring at me, waiting for those interesting items that he must have missed. 

All I could come up with in a hurry was shoes, so shoes it was. 

Well, Aaron, TJ Maxx has shoes.

He looked at me like I had just lost my marbles when I said that TJ Maxx has shoes.

“NO!” he replied.  “Shoes are in the CLOTHES family!!!”

It’s a lesson about the science of clothes……..and shoes…….. that I will not soon forget.

I Went Outside

I knew the minute that I laid eyes on Aaron this morning that he was tired and probably grouchy……and I was right.  He was having another “I’m tired and I don’t feel well and I don’t want to go to Paradigm” morning.  I just poured his coffee, opened the comics as I told him how funny Get Fuzzy was today, and told him that it was a nice morning……….so going outside to the mulch would be a great idea.  He dismissed that idea with a grunt, and I made my exit to go upstairs and get in the shower. 
Later, I went downstairs, steeling myself against Aaron’s certain verbal onslaught……….and found it strangely quiet.  There were his empty coffee cups on the table, his pill container and water glass on the counter showing that he had taken his pills, and the rumpled comics revealing that he had read his favorite Get Fuzzy comic.  I glanced out the window and saw a splash of yellow out under the trees.  There sat Aaron, wearing his yellow shirt, and fully occupied in the twigs and small sticks there under the trees.  He was meticulously breaking each twig and watching it fall into his mulch trash can, slowly filling it even more, piece by little piece.
I left him alone, hoping that his quiet time under the trees was working its magic.  Still, as I walked outside after awhile to tell him that it was nearly time to leave, I dreaded his possible reaction.  By this time he had moved over into the neighbor’s back tree line, where there was a whole new and fresh pile of dry twigs.  I approached him, took a deep breath, and said, “Hey Aaron!  It’s time for us to go.”
To my great surprise and relief, he happily just said, “OK!”  And that was it!  Wow!  He got right up, and he and I walked to the house, talking about the nice day and how the sun was getting hot.  I was still surprised at how much his mood had changed, and was just very thankful that it had changed for the better. 
As we drove to meet his group, Aaron launched into his topic of the day………robots.  In particular, HK47……the robot on his Star Wars Republic game.  He talked about everything robot and HK47 that he could think of, and asked me tons of questions that I tried to intelligently answer despite the fact that I am not a robot or HK47 expert.  Finally Aaron paused for a breath, and I quickly grabbed the moment to tell him that I was really proud of him for doing so well today.
He flatly replied, “I went outside.”  That was all he felt the need to say…….so I said, “You like going outside in the mulch, don’t you?”
“Yeah,” he answered.  “My mind thinks.”
Now this may sound like no big deal, but to me it was huge……….because to Aaron it was huge.  Huge for him to be able to convey just what he’s doing as he sits out on the ground, breaking mulch or twigs into his trash can.  I asked him what he thinks about, and he told me that he still makes up stories……which I knew that he used to do, but I wasn’t sure if his mind was still thinking up stories.   This story making calms him, and the repetitive motion of breaking small pieces of wood is a large part of this calming process.
 
Hoping to continue this glimpse into Aaron’s mind, I said, “You like it outside, don’t you, Aaron?”
And he answered, “Yeah.  Unless it’s a hundred!  Then that’s a problem!!”
I laughed, and Aaron laughed as he rubbed his hands together, and the spell was broken.  The sharing was over as he launched again into robots and HK47……….how he talks and what he says and what he sees and how he moves……….
But I was back at his simple comment……..”My mind thinks.”   It was like looking into a secret room full of hidden things not ever seen when he made that simple comment.  I loved that moment!  I loved those three little words that were enormous to me!  Somehow that time for him to let his mind think is also a time when he is able to refresh and be calmed. 

It’s the cheapest, most effective therapy ever………at least for Aaron!  I still think I just might join him.

Shut-Up

When our children were little, we tried to teach them to be polite.   There were certain words or phrases that we didn’t allow them to say.  One of those phrases was “shut up.”  We worked hard to keep from using that phrase, or allowing the kids to use it, when they were growing up.

Fast forward now to Aaron.  I don’t know if it’s because this was a forbidden phrase in our home or what, but Aaron says “shut up” now.  Sometimes he says it in a humorous way, with a smile or a laugh, and we know he’s not being malicious.  Other times, he is more serious when he says it……..and when he is really angry, he throws it out with venom.  It seems that nothing we say or do has been able to keep Aaron from uttering “shut up” from time to time.

We know that the other clients in his day group get tired of hearing Aaron say “shut up.”  After his recent bad day at Paradigm, Gary and I have really been calling Aaron’s attention to how often he says “shut up”………..and then reminding him of how much it offends and bothers people, and what a better response he could use.

Aaron has really tried to cooperate with this focus for the most part.  The other night he and I were having some light, fun conversation before bed……….and he laughingly told me to “shut up.”  I gave him my Mom look and before I could say a word, he said, “Mom, have you noticed that I’ve stopped saying shut-up?”

I replied, “Aaron.  You just said it.”

And he answered, “Well, I start to say it and then I stop saying it and then I say it.”

So now we know Aaron’s definition of stopping something.  He starts, then stops, and then starts again.  He kind of stops, right?   I could use this for my eating habits, you know.  “Well, I start to eat it and then I stop eating it and then I eat it.”  Or any number of other habits that I struggle with!

I closed our bedroom door that night, and Gary and I laughed as Aaron thumped up the hall to his room.  We definitely still have our work cut out for us!

Test Results……And More!

Today I took Aaron to his doctor appointment at the air base.  I will tell you right away that all of his test results came back perfectly normal.  What a huge relief!!  His blood pressure was excellent, and his weight showed that he has lost a grand total of approximately 60 pounds over a 7 month period.  The drug that we weaned him from this winter can cause weight gains of 50-60 pounds, so since all tests are normal and he has no other symptoms, we are fairly certain that this explains the huge weight loss.  We will monitor his weight monthly and send that info to his PA there.  We are very, very thankful for this good report today.  Thank you, Lord!

And now for the rest of the story.  You surely know that going on an outing with Aaron will be interesting.  His test results may have been normal, but as for the rest of the morning………

We walked up the hallway of the clinic and went right away to the sign-in counter.  I was aware of the curious stare of the girl behind the desk as she was trying to mentally classify Aaron.  Good luck with that, I thought.  And as I turned to remind Aaron to stay beside me, and to quit making the mouth noise, and to not clap…….. I was also aware of the stares of the two people behind us.  I was so thankful that Aaron doesn’t notice that, and that he feels no discomfort in public settings.  Absolutely none, as he delightfully started pulling on the stretchy barrier that marks the sign-in lane and I reminded him not to do that as I remind him at every clinic visit……and I was glad to take the necessary information form and sit down.

But Aaron had no sooner sat in the chair beside me when he was up again, headed with purpose toward something.  I quickly looked up and called him back, but then I saw what he saw……….a blood pressure machine!  He loves blood pressure machines, and so he said that he wanted to do this while we waited for his name to be called.  Mind you, none of Aaron’s conversations are spoken quietly.  I just nodded and smiled, and he happily turned in the chair at the machine……….where he proceeded to take off his ring, his watch, and his glasses.  I was thankful that he didn’t start to remove his shirt as well!  And also thankful that right then his name was called………so he sighed, and put on his ring and his watch and his glasses.

Aaron loves doctor visits.  He likes being the center of attention, and he likes answering questions whenever he is allowed, and he likes going on and on about whatever he wants to talk about to this person who has an interest in him and has ears to listen to his stories.  However, this day was a little different.  He did not have a rash to show, or a complaint to complain about, or a pain to rate.  When the PA came in the room after Aaron was triaged, she and I just talked and talked about Aaron’s test results and his meds that he takes and when he was weaned off the one drug.  She looked at Aaron, and spoke to Aaron, and smiled at him…….but the vast majority of the conversation was with me.  And why should Mom get all the attention?  She is not the one who lost weight and had to have blood drawn and had to pee in a cup and had to have nasty fecal smears done. 

So finally Aaron eased off of the exam table and stood beside me, staring at the wall…….the wall full of fun gadgets just waiting to be touched and picked up and explored.  I told him to not even think of touching anything………so he sat in the chair against the wall.  He sat there quietly, until I heard him rather softly say something about wanting to show her this.  Show her what, I thought?  But I was concentrating on my conversation with the PA.  Aaron, realizing that he was being further ignored, began to scoot his chair closer to me.  Scoot, scoot, scoot.  Still, the PA and I were engaged in what we were discussing………so Aaron proceeded to take off one of his shoes and then to remove his sock.

He sat in the chair, and then scooted even closer to me……….minus his shoe and sock.  Still we talked, but not about what Aaron wanted us to notice and discuss.  He knew better than to interrupt again, so instead he proceeded to slide down in his chair in order to stretch his leg out and place his bare foot up on the trash can that was right beside my chair.  And there he sat, scrunched down in his chair with his leg stretched out and his foot resting on top of the trash can………..waiting to be noticed………waiting to be questioned………waiting to be examined…….waiting for SOMETHING! 

Lt. Wendt likes Aaron, and she smiled like she understood and I smiled because I understand all too well………and then as Aaron saw a break in the conversation, he jerked up and grabbed his foot and said that he had something to show the PA!  He pulled back his toes and there, underneath his last two toes, was a little patch of peeling skin………and some black slipper sock fuzz.  “Look!” Aaron breathlessly said.  “What is that?!”

Lt. Wendt was grinning, and I replied to Aaron, “That’s slipper sock fuzz and some loose skin because you don’t shower correctly!”  Aaron was disappointed that this was the only discussion and diagnosis that he was to hear about his toe problem; but he was happy that the PA listened to his lungs and his heart, and that he got at least a little attention to make this visit worthwhile.  Soon his shoe and sock were back on his foot and we were driving down the road, headed for lunch at Subway……….where Aaron told me all about getting “unsweeted tea” when he went to Subway with Krysten, and do I like “unsweeted tea?”

After lunch, we went to our vet to pick up dog food and allergy pills……….and where Aaron got to pet Cato, the resident cat.  Then to Dillon’s for one of his prescriptions, and for junk food, and where of course Aaron had to try out the lounge chair that was on sale.

  And we looked at raspberries and blackberries to see the differences in those two interesting fruits.  Never a dull moment with Aaron!


All of this weight business with Aaron has taken a toll on us, and I believe he and I were both feeling like a huge weight was taken off our shoulders.  Thank you, Lord, for good test results and for a good day with Aaron……..and that all Aaron had to show the PA was slipper sock fuzz under his toes! 

  

A New Day………A New Start

Yesterday Aaron called me from his day group, having a bad day and very upset.  He wanted me to come and pick him up, but that’s something I don’t want to start doing unless there’s a very good reason.  I talked to Barb, part of the management there who is a real buddy of Aaron’s, and she shared some of the details of his very bad, no good day.  We agreed that Aaron could stay there, which he did, though there was a part of me that wanted to drive right over there and rescue him from his misery.

Much of Aaron’s problem has to do with his mouth, and with his impulsivity……..saying and doing things that he sees as funny, but which are not at all humorous to many around him.  He had settled down by the time he got home yesterday, and talked and talked about what he had eaten and what he shared with Rosie and that he didn’t want to go bowling, and on and on.  I broached the uncomfortable subject of his phone call to me, and of what happened to make him so unhappy.  He listened and responded a little, then was off to his room and to his routine.  In other words, the discussion was closed.  Typical Aaron.

He talked about it some with Gary during the evening, too……….and at one point came upstairs happily carrying a pack of Big Red gum that Gary had given him.  He waved it in front of my face while I was on the phone, grinning broadly and saying, “Look what Dad gave me!”  You would think he had keys to a new car!  Happy, happy Aaron!

This morning I drove early to the air base to drop off the last of Aaron’s lab samples in preparation for his appointment tomorrow morning.  Then I stopped by his epilepsy doctor’s office to get a copy of his lab results from a month ago.  All this lab business was leaving me with a rather heavy feeling……….a sense of foreboding.  We all know how uncomfortable it is to wait on test results, praying and hoping that things are fine.  We’re concerned about Aaron’s dramatic weight loss, hoping that it can be explained by some medicine changes, but still feeling the heaviness of worry creeping in to our minds. 

Yesterday morning I tried to get Aaron to step on our scales.  He wanted nothing to do with it, however.  A couple months ago he was happy to see how much he weighed, but now he was tired of all this talk of weight loss.  Finally he asked, “Mom, is something wrong with me?”  I felt stricken, but I cheerily told him that we weren’t saying anything was wrong………..that we just needed to be sure that everything was working as it should…….as I watched him storm off and hoped I sounded believable.

I wasn’t surprised this morning, then, when Aaron told me once more that he did NOT want to go to Paradigm because of what happened yesterday.  He repeated this several times as I got his coffee poured and even gave him some of his wiggly jello.  I kept the conversation light as I hoped that soon his mood would change.  I hoped that when he went upstairs I would soon hear the shower running, but instead I heard his movie playing in his room.  When I walked in his room a little later, feeling like I was walking on eggs, I casually mentioned that it was time to get ready. 

“You mean I have to go today?” he asked.  “I don’t want to go to Paradigm today!”

I asked him if it was because of what happened yesterday, and he blurted out a quick yes!  Then I told him how much everyone at Paradigm loves him, and how his friends like him, and how much Rosie would miss him………..and he grabbed his little hand towel that he keeps with him at all times and that really needs to be washed……..and he put it to his face, quickly wiping his eyes. 

Aaron was crying.  Not sobbing, but stubborn tears were there that he quickly tried to wipe away.  My heart went out to him as I felt my own tears sting my eyes.  Aaron had had enough…….enough of standing on scales and blood work and peeing in a cup and fecal smears and bad relationship days.  So I reached out and rubbed his back…….and I told him that I understood, but that today was a new day with a new start.  It was probably my touch more than my words that caused Aaron to relax.  He quieted down, took a shower, got all ready, and even tolerated mom’s choice of a CD in the van………..Pachabel’s Canon in D………a stretch for Aaron, who would have preferred something a little more rowdy.

Aaron was smacking his lips and chewing with gusto as we drove along.   “Are you chewing some of the Big Red gum that Dad gave you?” I asked.

“How did you know?” he answered as he chomped.  I smiled…and said that I could pretty definitely hear his hearty chewing and could smell the cinnamon.  He thought that was rather strange.

I also know that we love Aaron, even in the aggravating times and the times when we want to throw our hands up and the times that we raise our voices.

I know something else.  I know that Aaron hurts and worries just like the rest of us do………except he can’t verbalize it like we can.  But his tears told me enough.  They showed me his heart.

Something else I know is that God is in charge of each day, of each test, of each uncertainty. 

Tomorrow is a new day……..every day is a new day……..to know that we love and are loved, and to have a fresh new start with each other and with God.   

Is It Dusk?

For several days before the Fourth of July holiday, Aaron had asked if we could go to see some fireworks.  Gary and I decided to drive over to our little town of Goddard to watch the fireworks show there, and so I told Aaron this news on the morning of the fourth.  He was matter-of-fact about it, not showing great excitement but still indicating that he was happy about going to see the fireworks. 
 
We had a laid-back kind of day, not hurrying or rushing about anything.  Aaron asked a few times during the day if we could take our Great Dane, Jackson, for a walk around our neighborhood circle……..but I told him no because the temperature was in the mid-90’s, and big old black Jackson doesn’t handle the heat very well.  We had a late supper, and afterwards Aaron again asked if we could walk Jackson.  This time I said I wasn’t sure because I really wanted to clean the kitchen before we went to see the fireworks.
 
“What time are the fireworks?” Aaron asked as he looked at the clock.  He was hoping that we would have time for that walk.  I told him that the fireworks didn’t start at a set time, but that the paper said they would start at dusk.  And thus began the questions from Aaron……questions about dusk………that nebulous time of evening that has no set time.  If you know much at all about Aaron, you know that he loves exact, set times.  For instance, that very morning he slept late and when he finally lumbered downstairs, the first thing he said was, “Mom!  I slept til 9:23!”
 
So Aaron wanted dusk to have a time.  He wanted me to tell him something like, “Well, Aaron, dusk begins at 9:16.”  When Gary and I finished cleaning the kitchen, I went up to tell Aaron to get ready to leave for the fireworks.  He replied, “So can we take Jackson for a walk before we go?”  I told him no, that we didn’t have time, and he once again asked, “So what time do the fireworks start?”  I reminded him that they started at dusk and he asked again, “When does dusk start?” 
 
Aaron, dusk starts……….well, dusk is when it’s just starting to get dark.   And again he asked, “So what time is that?”  As I walked down the hall, I turned and over my shoulder told him that I wasn’t sure but that it was pretty soon and so get ready!  And we were only beginning.   I will put Aaron’s comments in italics for the rest of this blog.
 
We piled our chairs into the van, grabbed water bottles…….and Aaron brought his two jars of peanuts…..and off we went.  We had barely started driving when we heard Aaron.
 
Is it dusk yet?  No, Aaron, it’s not dusk yet. 
 
When will it be dusk?  In a little while, Aaron.  We drove on, talking about this and that while Aaron made sure that his CD was loud enough for him to hear.  Then we heard……..So when is dusk?  It won’t be long, Aaron. 
 
We found the perfect spot to set up our chairs, and we settled in with our water……..and Aaron with his peanuts………..and he turned to us with,  So is this dusk?  No, Aaron, it’s not dusk yet.
 
Then how long until it’s dusk?  Not long, Aaron.  Just enjoy the people’s fireworks that we can see around us.
 
So they’re doing fireworks.  Does that mean it’s dusk?
 
No, they’re just doing fireworks in their yards. 
 
A short time went by while Aaron drank some water and crunched peanuts.  But to Aaron, the time seemed to be going very slowly.  When is it dusk?
Soon, Aaron, soon.  Look at those cool fireworks that those people are setting off over there! 
 
Will dusk be soon? 
 
Look at those fireworks!  And then Aaron wanted to know if the neighbor’s fireworks were THEM…….the fireworks that we had come to see………at dusk.
 
Are those them?  Nope, those are just some fireworks that people are doing in their yards.
 
So it’s dusk?  Not yet.
 
Then why are they setting off fireworks if it’s not dusk? 
 
Because they don’t need to wait until dusk.
 
Dusk is soon, right? 
 
Trust me Aaron……….it can’t come soon enough.
 
Are those them?!  No, not yet. 
 
But isn’t it dusk?
 
Well……yes…..it’s kinda dusk, I guess.
 
I thought you said the fireworks started at dusk!
 
Aaron, they didn’t give a TIME……..a PRECISE TIME!!!! 
 
There was quietness for awhile……….a little talk about the small dog that was on a leash…….about the little children that toddled past…………Is it dusk?
 
Gary and I were exchanging glances, halfway amused and halfway frustrated…………wondering how much longer Aaron could wait for dusk.  Even though it was actually becoming quite dark, we would NOT tell him that dusk had passed.  Not in a million years!!
 
When is dusk?  Oh, how I wished I hadn’t even mentioned the word DUSK!!!! 
 
I don’t think they’re going to start at dusk.
 
Just enjoy the music, Aaron.  Just enjoy the people, Aaron.  Just enjoy your peanuts, Aaron.  Just enjoy your water, Aaron.  Just enjoy something OTHER THAN DUSK!!!!!!!
 
Finally, finally, FINALLY, the national anthem played and then the beautiful fireworks started.  Aaron enjoyed them but he wasn’t as exuberant as I hoped he would be after the long wait.  I think this waiting for dusk business had taken a toll………had superseded the fun.
 
When the fireworks were over, Aaron hopped out of his chair, grabbed his water bottles and peanuts, and walked quickly to the van.  He came……he waited……he saw……he left.
 
At least on the way home there was NO mention of dusk!
 
Mom, can we take Jackson on a walk tomorrow?
 

 

I almost told him that maybe we would walk tomorrow…….at dusk.  But I didn’t dare!
 

Simply Amazing

Yesterday was D-Day…….the day for Aaron to go to the lab for blood work and for the dreaded urine sample.  I wasn’t sure what to expect when I opened his bedroom door and said good morning in a cheery voice.  He looked up at me…….and smiled.  What a great start!  And sure enough, Aaron was in a happy mood as he got up and showered and took his pills…..and wasn’t allowed to drink his coffee or eat any of his strawberry jello that we had made especially for him the night before.

Off we drove to the air base, listening to his CD choice…….turning the music off occasionally as he shared yet another observation from all the sights outside the windows of the van.  At one point he said, “Mom.  I heard Dad walking early this morning in the hall.”   I asked him how he knew it was Dad and not me, and he answered, “Because Dad’s footsteps are deeper!”  I knew his voice was deeper, but wasn’t aware of his deeper footsteps.  Interesting Aaron!

We walked into the small lab area at the air base clinic.  We passed by the first bathroom in the waiting room.  The bathroom door was open, and Aaron………who doesn’t like bathrooms and who REALLY doesn’t like public bathrooms…….lagged behind me.  I turned and saw him craning his neck to see inside the dark bathroom.  I knew he was scoping it out and that he was dreading what was to come as he had to pee in that cup……..there in that already uninviting restroom. 

As I checked him in at the counter, I turned again to see what Aaron was doing…….and there was no Aaron.  Just then I saw him lean his head slowly around the corner.  He had snuck up the hall while I wasn’t looking.  When he saw me, he smiled broadly and came around the corner.  “I was hiding from you, Mom!”  I was thankful that he was just playing a game and that he hadn’t actually run away from that awful bathroom.  And thankful that he was still in a good mood!

He sat down and slowly answered the technician’s question about his name and birth date.  I try to let Aaron answer those questions himself, but he always falters on the date of birth.  He’s wondering if he should say 11-8-84 like Mom does, or November 8, 1984 like he’s used to saying.  I just waited patiently and so did the tech, and soon Aaron got the date straight and all was well.

The first arm that the tech looked at wasn’t going to work, so he removed the tourniquet and stuck Aaron’s right arm.   Aaron takes all this in stride, so I walked out and stood outside the door.  I looked in once, and suddenly a huge lump appeared in my throat as I looked at Aaron sitting in that chair……….getting stuck yet again……..being all brave, but dreading what to us would the easiest part of this morning…….the pee cup.  It was both sad and then funny at the same time, and I had to will myself to think of the humor and to not see my boy sitting there with a needle in his arm……..wondering if he’s all right and praying that his weight loss can be explained by something other than another scary diagnosis.

Soon the blood draw was complete and there stood Aaron, holding his sample cup and looking positively uncomfortable.  He held back as I walked in the bathroom and turned on the light, but then he stepped inside and listened impatiently to my instructions.  Aaron shows anger when he is scared or embarrassed, so he stood there saying, “I know!  I know!” as I went over the process……….knowing that he didn’t know but knowing that he was just ready to get this over with…..NOW! 

Then he asked, “Mom, you’re not staying in here, are you?!”  I assured him that I was not, and then I exited the bathroom and sat in the waiting area, hoping that things behind that closed door were going well.  It wasn’t long before the door opened and Aaron walked quickly out, happy to be rid of that bathroom and this whole ordeal……….and carrying his full sample cup.  So back in the bathroom we walked as I opened the little door and he set the cup inside……..and we were done, at last!! 

I fully shared Aaron’s relief, trust me!  I praised him for doing so well as we drove through the Burger Kind drive-through.  He happily chattered on the way home, where he placed his bacon burger on a plate………because he always must have a plate or a bowl on which to place his wrapped food.  And you can see in the picture that he also has a spoon, fork, and knife……which he didn’t use but which MUST be there, no matter what he eats………and his napkin holder, which he does use…….way too much…….many, many napkins with each meal.

And then the best part……….the strawberry jello!!  He watched me spoon it into a bowl, laughing at how wiggly it was.  And he enjoyed every single bite!  I was glad that we had made the jello the night before so that he could be rewarded for his peeing in the cup ordeal this morning.  Such a simple reward, but it meant tons to Aaron. 

And that’s how Aaron is………..it’s usually the simple things that either frustrate him or make him very happy.  The simple things that trip him up or keep him motoring right along.

That’s why I can say, for sure, that Aaron is SIMPLY amazing!