The Just-Right Pillow

One of the main characteristics of Asperger’s Syndrome, or any other form of autism, is the insistence on sameness that displays itself in a multitude of ways.  Aaron manifests this characteristic in so many areas every day of his life.  One way in particular is his bed, as I’ve written about in other blogs.  Every tiny aspect of his covers, his pillow, his nightstand, and even the items that he insists on putting on the floor around his bed must be just so-so.  If they are out of place then Aaron cannot rest. 

I remember when he still put his stuffed animals on his bed.  He did this into his early 20’s, which bothered me a lot.  I tried to get Aaron to put the animals away but he wouldn’t hear of it.  Every night he would meticulously place each animal on the bed in just a certain order, each in their own place that never varied.  Then he would adjust each arm, each paw, each ear, each tail…………and step back to view his bed.  If anything was out of place he would then adjust it carefully.  Or if we messed anything up as we said goodnight, it had to be fixed immediately.  Only when it was all exactly right would he softly climb into bed and settle down for sleep.   When Aaron had his VNS surgery, his upper chest and neck were very sore from the incisions.  Only then did he agree to let the animals stay in their crate in his closet.  Lo and behold, he realized that he could sleep just fine without his stuffed animals!  And also saw that he had more room to toss and turn without the fear of messing up a tail or an ear on his stuffed companions!  He has never asked for them again.  Victory!!

One day years ago I bought Aaron a body pillow to use.  I thought that it would keep him from settling at night into the space between his two regular sized pillows, where I would often find him during a seizure or when getting him up in the mornings.  Sure enough, he slept very well on his new large pillow and has never wanted to go back to regular pillows again.  There are some requirements for his body pillow, however, when we help him make his bed or change his sheets.  The pillow must be stuffed smoothly and fully into the very long pillow case, with no wrinkles or bulging.  And when placed on his bed, the zipper must always go on the left side of his bed.  Always.
 
This morning Aaron was grouchy, not wanting to go to Paradigm.  I just treaded lightly as I poured his coffee and offered him some breakfast, which he refused.  I went about my business as usual, hoping all the while that he would settle down and cooperate.   I still kept up my soft tone while being firm, not giving in to his demands to stay home.  And for some reason, he did start calming down.  I was in my bathroom getting ready when I heard him walk into my room and say, “Mom, something’s wrong with my pillow.”  I glanced out into my bedroom to see that Aaron had placed his long pillow on the end of our bed.

“What’s wrong with it, Aaron?” I asked.  He pointed to it and said, “See?  It’s all fluffed up!”  I couldn’t see anything fluffed up about it, but I knew that in his current mood I needed to take his concern seriously.  Any dismissive attitude on my part pertaining to his pillow would possibly only escalate his fragile mood.  I peered down at the seemingly normal pillow as he pointed out the problem.  And yes, there it was………..clear to me, since I do tend to see the world through Aaron’s eyes.

The pillowcase had been changed the day before, and the end of the pillow that Aaron sleeps on………the unzippered end……….was not perfectly flush inside the pillowcase.  The two sides at the end of the pillow were a little folded in, which made the two corners of the pillowcase sag down a little.  So this was why, when I went in to get Aaron up this morning, he had pulled the pillow way over so that he was sleeping in the middle of the pillow and that unzippered end was hanging off the bed.  He could not bring himself to sleep on that part of the pillow that wasn’t just right. 

And he confirmed this as he said, “I had a hard time sleeping on my pillow, Mom.  It wasn’t right!  It was all fluffed up!”  Yes, it was a little poochy there……..fluffed up, as Aaron says……….so I pulled the pillowcase back until it was nearly off and I made sure the corners of the pillow were rearranged so that they fit into the corners of the pillowcase.  Aaron watched carefully.  I laid it back on our bed as he examined it……….and was very relieved when he gave me his word of approval. 

We put the pillow back on his bed then, making sure the zippered end was on the left side of the bed, of course.  He had already asked me if I would help him make his bed while he was gone……….which is really asking me to just make his bed while he’s gone, which I’ve told him over and over.  Anyway, we got every cover just right and all the wrinkles tugged out and things tucked in that must be tucked in……….and Aaron was happy.

It was such a small thing, that fluffed up pillow.  It would have been easy for me to dismiss it in my hurry to get ready.  But that small thing to me was no small thing to Aaron, and it was best for me to recognize that and deal with it in an understanding way at that moment.  It saved a lot of anger in the long run, that’s for sure.  For Aaron would have been angered and bothered all day over that fluffed up pillow, and at my lack of comprehension about its importance.

This is a lesson that is reinforced almost daily in our home…………that small matters can be huge to Aaron, and to save huge outbursts or distress on his part, it’s best to nip it in the bud.  Repairing the fluffed up pillow was no big deal, seemingly, but it sure was to Aaron.  He saw my interest, too, and I hope he saw my love for him.  He went happily to his group, chattering all the way.  That makes for a good day for both of us!

And I’m sure that we’ll both sleep better tonight.

SHE’S CRAZY!!!!

As I recently had shoulder surgery, I was reminded of the time that Aaron had surgery for a broken wrist.  It was quite a few years ago, here in Wichita.  I was busy in the kitchen that particular evening as I cooked supper.  I didn’t pay much attention to Aaron as he walked in to where I was working until he told me that he had fallen outside and hurt his wrist.  “Mom,” he said, “I was trying to be one of those people at the circus that walks on that tightrope.  I was walking on the bricks around the porch and I fell off.”  I told him to go sit in the family room and soon I stood over him, looking down at the bulging bump on his wrist, and fearing the worst.

A trip to the emergency room and an X-ray confirmed what we thought to be true……….Aaron did indeed have a broken wrist.  He wore a splint until we could see the orthopedic doctor a few days later.  The doctor said that he would try to set the wrist without surgery, but if the bones moved at all then surgery would be necessary.  A couple nights later, I stood over Aaron in his bed and watched him have several seizures.  There was nothing we could do to stop the jerking.   And there was nothing we could do to change the outcome of that movement.  Surgery on his wrist was scheduled after the next X-rays revealed that the bones had shifted out of place.

None of these events phased Aaron in the least.  I guess God has gifted him with an ability to  have no fear of medical procedures.  He has always done better if allowed to watch while his blood is being drawn or an IV inserted.  EEGs, MRIs, X-rays, spinals………nothing has ever really upset him.  Gary and I are very thankful for that toughness!  So the prospect of surgery was no big deal to Aaron, even as I was concerned about it and wondering how it would affect his seizures.

The morning of his surgery arrived and there we were at the surgery center, bright and early.  Soon a nurse stepped out to usher Aaron and I into the prep area.  I knew right away that the second she saw Aaron, she recognized that he had special needs.  Nothing was strange about that.  However, I soon realized that she thought Aaron was mentally challenged.  I knew this because of the way that she spoke to Aaron.  She was very nice, but she spoke to Aaron like he was a very young child instead of a young adult.  She spoke slowly and deliberately to him, and she also talked in a sing-song voice.
  
She gave him instructions about undressing and about putting on the gown, all the while her voice lilting up and down.  I hoped that she would soon see that Aaron had no mental challenges and would just talk to him normally.  I stayed with Aaron, and soon he was settled on the bed.  She returned, and began preparing him for surgery.  “Aa….ron,” she slowly said,  “this is a blood pressure cuff.  Do you know what a blood pressure cuff is?”  Aaron sighed loudly and looked at her as if she had three eyes.  I knew that we were headed for dangerous ground as Aaron gruffly answered, “Yes!”  He stuck his arm out as she continued half-singing and half-talking.  “I’m going to wrap it around your arm and then it’s going to squeeze a little bit.  It won’t hurt at all.”   I wondered if her voice could possibly go up and down any further even as I noticed that Aaron was becoming more irritated.  If only she knew how often he had worn a blood pressure cuff!  As she removed the cuff, she said, “Very good, Aaron!” with all the enthusiasm and lilts in her voice that she could muster.  And Aaron was not enjoying this one bit!

Everything she did was preceded by her elementary explanations to Aaron in her singing voice and drawn out words.  “Aaron, this is a thermometer.  Do you know what a thermometer is?”   “Aaron, this is going on your finger but it won’t hurt.”   “Aaron, this will stick a little.  Good boy!”  I was in a dilemma as I patted Aaron’s arm in an effort to calm him.  Of course, she thought I was patting Aaron’s arm because he was scared when in reality I was patting his arm in the hopes that he wouldn’t lash out at her verbally by telling her what he thought of her silly voice.  I knew that if I corrected her in any way in front of Aaron, he would say, “Yeah!  I’m not dumb!  You are!!”……….or some variation of that.  Yet I kept hoping that she would lay off the singing voice and the simple childish talk to Aaron.
 
Finally, it was time for Aaron to mark his arm that was having surgery.  As she handed the pen to Aaron, she sang, “Aa…..ron, I want you to put an ‘X’ on the arm that’s having surgery.  Do you know how to make an ‘X’?”   And there lay Aaron, who knew his alphabet before the age of 2, being asked by this all-too-nice nurse if he knew how to make an ‘X.’  I happily told him to just make the ‘X’ as he reached up and yanked the pen out of the nurse’s hand, and rather angrily marked a big ‘X’ on his right arm.  She seemed oblivious to his simmering mood as she again sang, “Very good, Aaron!”
 
I was so very happy that she then turned and walked out of our little cubicle.  Aaron immediately jerked his head in my direction and loudly exclaimed, “SHE’S CRAZY!!!”  And I wanted to say, “Yes, Aaron………but she thinks YOU are!”………..yet I knew that I could not say that, so I just told Aaron that the nurse was being very nice and that he needed to also be very nice to her.  She quickly returned and began her lilting talking again while I once again patted Aaron’s arm.  And in total exasperation, Aaron rolled his eyes back into his head and gave a huge sigh.  He kept his eyes rolled back as the nurse continued to chatter and I continued to pat……….and he now really did look like he had mental challenges.  I just wanted to laugh, but I was trying to keep things balanced and I was hoping that Aaron’s eyes wouldn’t stick like that and I was pleading in my head for this oh-so-nice nurse to just hush.

I never dreamed that I would see the day that I was relieved to watch one of my children being rolled into surgery………….but that day had arrived.  We had survived the lilting-voiced nurse without a major blow-up from Aaron.   Yes, Aaron………..go to sleep now……….and let me go pray that our special nurse is not in recovery. 

Thankfully, she wasn’t to be seen again…….nice as she was.  But Aaron talked about that “crazy nurse” for a long, long time.   

We’re Eating WHERE?

Yesterday Aaron had a dentist appointment, and as usual, he was looking forward to our day together.  He gladly endures having his teeth cleaned because he knows that afterwards we will go somewhere for lunch, and then to Wal-Mart, and maybe somewhere else – which on this day, our somewhere else was to be CD Tradepost.  I let Aaron choose our lunch destination several days earlier and was not at all surprised when he chose Olive Garden…….his new favorite place to eat. 

He got up earlier than normal, which is sometimes a sign that he is excited about his day.  When I went in to talk to him, he immediately asked, “Mom, is 36.3 cold?”……..and I knew that he was looking at the outdoor temperature on his new  indoor/outdoor clock and weather center.  I assured him that the temperature today would be quickly rising and that we were in for a very warm, pleasant day for his dentist visit.
 
As I turned to leave his room, he had one more question.  “Mom, are we going to eat lunch at Oliver Garden?”  I responded with my own question to be sure that I had heard him correctly.  “Eat where, Aaron?”  And he repeated what I thought I had heard…..”At Oliver Garden,” he said.  I smiled and didn’t correct him.  Sometimes I prefer Aaron’s rendition of familiar names.

Later, as we drove past the farmer’s fields on our way to the dentist, Aaron kept up a steady stream of mostly one-sided conversation.  He talked about his Star Wars game; about Tavion; about whether cells can be renewed; about whether cells are actually nerves; and then transitioned to the fascination of crystals and fool’s gold……….among many other topics that entered that ever-active brain of his.
 
I enjoyed the relative quiet of the waiting room while he got his teeth cleaned, wondering if we would have a repeat of what happened at his last dental visit.  I was relaxing in my seat in the waiting area when I heard Aaron’s unmistakable voice say, “Mom!”………and I looked up to see him standing there in the middle of the waiting room, with the paper bib around his neck and the dark protective glasses covering his eyes.  “Aaron!  What are you doing?” I asked – just as the hygienist came around the corner, smiling.  He wanted to be sure that we were going to eat out and go shopping, and I said yes as he turned and followed the hygienist back to his waiting chair.  The other people in the room had that typical puzzled look on their faces and I acted like nothing strange had just happened.  If people could only see how funny their faces look at times like this!
 
Thankfully, on this visit Aaron stayed put in his chair and before long he was finished at the dentist and we were driving toward “Oliver Garden” for our fun lunch.  Later, as we waited for our food to arrive, Aaron spied the wine bottles sticking out of the racks in the wall.  “Mom!  Look at those bottles!” he exclaimed as he pointed to the wall. 

Aaron, don’t  point.

“But they keep those bottles in the wall!  Is that beer?”  I told him that it was wine, and he continued in amazement………”How do they get it out of the wall without breaking the glass?!”  So I gave him a lesson on how the bottles were not stuck in the wall, even as I looked at them and saw that they really did look like they were a part of the wall.  There I go, looking through Aaron’s eyes!

As we sat there, I had the usual conversations with Aaron about the usual topics.  Aaron, don’t make those noises.  Aaron, don’t stare at those people beside us.  Aaron, be careful and don’t spill your tea.  Aaron, don’t blow your straw paper on me.  Aaron, wipe up that spilled tea with your napkin.  Aaron, don’t sing.  And as I helped him get some salad, he said, “Mom, I don’t want the hard parts.”  I know that the hard parts of the salad are the croutons, even as he continued, “Do you want me to give you the hard parts?”  So I got the extra croutons and we were both happy.

As we munched on our pizza, Aaron brought up his favorite topic…….out of the blue, as so often is the case.  “Mom, Rosie likes me.”  Ah, Rosie…………Aaron’s special friend at his day group.  So here I sat with my grown son who is still a boy in most ways, and he wanted to talk about Rosie.  I asked him, “So how do you know that Rosie likes you?”  He didn’t hesitate at all before answering, “Because she sits beside me when we watch TV, and at the movies.  And we share popcorn.”

Their friendship is so sweet, and we are thankful for it.  He then told me that yesterday Rosie’s mom had come to Paradigm, and I was reminded of the very amusing comment that Aaron made a few weeks ago when he said, “Mom, today Rosie’s mom came to Paradigm.  It was the same kind of Mom that came to my birthday!!”  I had laughed and Aaron had no idea of how funny his comment was. 

He continued telling me about Rosie’s mom being at his group yesterday.  “I had a slushie that was half empty and I asked Rosie’s mom if I could give it to Rosie.  She said yes so I gave it to her.”   I asked him if Rosie ate it and he very patiently answered, “You don’t eat it.  You drink it!”  So I asked him if Rosie drank it and he said yes…………germs and all.  Well, they are friends, you know……….and friends don’t worry so much about all that germ business.

Last night, as we were saying good night, Aaron commented, “Mom, we had fun at Oliver Garden.”

Yes, Aaron, we did have fun at Oliver Garden.  I didn’t tell him that the most precious thing for me was to once again have the opportunity to see inside his heart that is sometimes tender…………at least when it comes to Rosie.  And I am thankful that even though Aaron has issues and is labeled as having “special needs”………..I have the unique privilege of having a son who will probably always tell me everything that he is thinking.  Much of it gets rather old at times, but then I have the opportunity to capture a real nugget……or more than one. 

And it’s not fool’s gold, either.  These times with Aaron are true gold……..priceless and irreplaceable.   

I’m Sorry, Mom……..I’m Sorry!

Earlier today, Gary and I were enjoying a quiet and laid-back Saturday morning.  Aaron was upstairs asleep……..nothing unusual about that, especially on a lazy Saturday.  Later, Gary went out to run some early errands before the crowds had the same idea.  I went upstairs to do some things and to jump in the shower.  Not long after I was in my room, I heard Aaron get up and go into his bathroom………nothing unusual about that, either.  Except that he was in there an awfully long time……….long enough for me to notice that this was unusual.  I stepped out into the hall and over to his bathroom door, where I was assailed by a very strong odor.

Fearing the worst, I asked, “Aaron, are you all right?”  And he softly answered, “No.”  Just a flat answer.  I knew what was wrong, even as I dreaded what I was about to face.  Aaron sometimes has intestinal trouble, as I wrote about earlier when I told about how he threw up on Thursday evening.  I knew that today his troubles were coming from the other end.  I told Aaron to just get in the shower and that I would come in then to see what needed to be done.

I waited until I heard the water running and then I opened the door.  Oh my goodness!  I won’t be graphic about the mess I found, but it was truly awful.  Poor Aaron had tried to clean it up, and it was just a disaster.  He heard me gasp, and as he stood in the pouring water of the shower, he said, “I’m sorry, Mom.  I’m sorry!  Mom, I’m sorry!” 

“I know you’re sorry, Aaron,” I said as I stepped back to assess the situation.  I removed my sling/immobilizer from my right arm, as well as my sweater, and then went downstairs to get gloves and so forth for cleaning.  I returned and set about the unpleasant task at hand.  And from the shower there came Aaron again……….”I’m sorry, Mom!  I’m sorry!” 

I finally told Aaron to quit saying that he was sorry, and I told him that it was all right………even as I fought the irritation that was welling up inside.  How on earth could he have made such a mess?  Goodness gracious!  Would I ever get it cleaned up?  And I was thankful that Gary wasn’t there, as he had his fair share of cleaning up vomit on Thursday. 

“I’m sorry, Mom,”  I heard Aaron say again.  And again I told him that it was OK, and that he didn’t need to keep apologizing.  But was it really OK, I asked myself?  I know that in these times of cleaning up Aaron’s messes………of dealing with his disasters………..of following behind him to correct the problems………..I, as always, have a choice to make.  I have learned that there is no benefit in self-pity.  Nothing is gained from questioning my lot in life……….being the mother of a child with special needs such as this.  I know that it is defeating for me to try to wish the situation away.   Negativity only breeds unhappiness and discontent…….and most important, is not how God wants me to handle this life that He has somehow allowed me and Gary to have. 

Paul said, “I have learned, in whatever state I am, therewith to be content.”  Paul wrote those words as he languished in a damp, horrible prison.  So there I was, cleaning up this vile mess and knowing that I needed to let my attitude reflect Jesus.  I needed to reflect Jesus to Aaron, and I needed to let God rule my thoughts.  So I prayed as I cleaned and as I tried not to gag.  I asked God to help me bring glory to Him even in this state in which I found myself.  I asked Him to help me have unconditional love for Aaron……….to not just love Aaron when he’s saying something hilarious but to also love him when he’s stinky and messy and furthermore, messing up my nice morning!

Eventually, the situation was under control.  The bathroom was clean and Aaron was in his room, playing a computer game and as good as new.  I walked in to where Aaron sat at his desk so that I could check on him, and as I turned to walk out I heard him softly say again, “I’m sorry, Mom.”  My eyes filled with tears as I walked away………….those tears that I don’t often allow to come.  I know that Aaron, in his own way, wishes that he could change things.  He is happy and content with his life most of the time, but I wonder what goes through his mind on days like today.  Does he wish that he didn’t have the issues that he faces daily?  Does he recognize his differences?  Does he see how dependent he is on Gary and I for his care?
 
I don’t know for sure, since Aaron doesn’t express those deep heart issues.  But his comment, his soft, “I’m sorry, Mom” shows me that he truly does know something.  He knows that he made a huge, ugly, smelly mess for his Mom to clean………and he was truly sorry.  That touches me.  And that urges me to love him and to let him know that it’s OK…….that I will be there to love him and help him for as long as God allows.

Aaron went outside later, and as I looked out I saw him in the front flower bed.  There he sat, in the mulch, relaxing and unwinding in the unique, quirky way that he does.  He hasn’t been out in the mulch for a long time.  He needed this today……….this time to decompress and sort out his thoughts.  Maybe I should have joined him……and wouldn’t that have been a sight to the people who were looking at the house for sale across the street from us?  I smiled at that thought. 

And I smiled as I looked at our son…….our special son……..who continues to teach me lessons of which he is completely unaware. 


May I learn them well.   

Something Went Wrong!

Yesterday, Thursday, was mall day for Aaron’s day group.  I always give him a little extra money on Thursdays so that he can get himself something for lunch.  And I always give Aaron my lunch tutorial on the way to meet his group.

“Now Aaron, for lunch be sure that you choose something that’s good for you.”  By that I mean something that’s not composed of ice cream, hot fudge, chocolate chips, and whipped cream.  In other words, Dairy Queen should not be his lunch destination, as it so often has been in the past.

He assures me, with some exasperation, that he knows this and that he promises to get a “good lunch.”  Still, I’m never sure that our definitions of “good” are anywhere near similar.  This is because Aaron wants what tastes good, whereas I want what is relatively good FOR him.
 
Aaron did his usual loud, grand entrance into the house when he returned from his day at the mall.  He hardly had time to blink when he rushed in the door before I hear him loudly say, “Mom?”  It didn’t take him long to find me and then he instantly began to tell me about his day – beginning, of course, with food and what he had for lunch.

“Mom!  We went to the mall and I had pizza for lunch!”  He said this rather breathlessly, as if he was telling me that he had gone to Rome for lunch.  He wanted to know if this was a good lunch and he hoped that I would be pleased, so I let him know that this was a good choice.  At least when compared to the Triple Death By Chocolate ice cream creation he sometimes consumes, pizza is a decent substitute.

He breathlessly continued, “And Mom!  I noticed something!  Those men were Italian!” 

Really, Aaron?  How did you know that they were Italian?

He answered, “Because they didn’t talk in the American way!”
 
He happily told me that one of the men behind the counter pointed to the various pizza choices and said, “Pizza, pizza, pizza!” ……………and not in the American way!  And Aaron told the Italian man that he was trying to decide what FLAVOR he wanted! 

As Aaron told me that he liked the flavor of pizza he chose, he said, “Look what I brought with me.”  Out of his pocket he pulled a knife, fork, and spoon that he had hidden in his pocket before he left the house.  I told him that he did not need silverware from home when he goes out to eat.
 
“But Mom, I wanted it because it’s metal!”  Oh, Aaron………….who always must have multiple pieces of silverware for every meal……..now wants metal silverware as opposed to plastic.  And I know that even though I remind him that he doesn’t need silverware at all with pizza, he will continue to have silverware around him with his pizza because he must.  He just MUST have silverware around him when he eats.  I also make a mental note that frisking him before he leaves the house would always be best.

Aaron continued on with reciting his lunch adventure by telling me about the lady at the oriental restaurant in the food court.  “Mom, that lady had meat on a toothpick.  She asked me if I wanted one and you know what I said?”  I told Aaron that I did not know what he said, knowing that he was about to tell me……….and he did.  “I said ‘Ewwww!’ ” 

I told Aaron that he should never respond to anyone who offers him food by saying “Ewwww!”  He answered, “But Mom, it was fish!  Do you want fish in Chinese?!”  I have no idea what fish in Chinese means, but obviously it is not in Aaron’s food palate.  Regardless, I confirmed to him that the nice response would have been to say, “No thank you.”  And he reaffirmed, “I thought it was just better to say ‘Ewwww!’ ”  Another mental note that we need some manners updating.

Later, as Gary and I were almost finished with our nice little dinner together, Aaron came downstairs and sat in the family room…………where I noticed that he looked a little odd and was swallowing in a strange way.  Then, as Aaron told Cody today……….”Something went wrong!”  I urged Aaron to hurry into the bathroom because I suspected that something was amiss in his digestive process……….which was correct.  He didn’t quite make it all the way to the toilet before that wonderful “pizza, pizza, pizza!” came right up.  This was not quite the ending to Aaron’s day or to our dinner that we would have chosen.  Indeed, something went wrong…….very wrong.

Poor Aaron, who lost all of that special flavor of pizza that he had chosen from that Italian man.  Poor Gary, who would not let me lift my one good arm at all and who patiently cleaned it all up himself.

Perhaps Aaron should have chosen to eat the fish that was in Chinese.  I’m not sure that he will ever choose that flavor of pizza again from that Italian man. 

Today it’s popcorn at the theater…………the largest popcorn possible……..with the most butter that they will squirt on the popcorn.  No amount of lecturing on my part or of something going wrong on Aaron’s part will deter him from his large buttered popcorn. 

Gary and I are taking Aaron out tonight to do a little shopping, and MAYBE to eat out.  We’ll see about that eating out part.   I know that I should frisk him before we leave…….to check for metal silverware in his pockets.

And brush him up on his manners as we drive.

And remind him of good food choices.

And stick some barf bags in the van……….and in my purse.

So much can go wrong! 
 
But somehow with Aaron, it all turns out right in the long run.