Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

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.

Grey Soup and Tornado Chips

 I was reminded this past weekend, as Aaron talked about food, of the very interesting ways that he describes certain foods.  As always, Aaron notices the uniqueness of various foods and he registers this information in his brain.  He then uses what he has registered in order to describe each food.  So often, he won’t say the name of the food that he’s trying to describe, but he’ll use the features of that food to identify it.  Sometimes he tries to tell us the color of the food, but since he’s color blind this often just adds to the comedy of his word pictures.

One day when he came home from his group, I asked him what they had fixed to eat that day.  It was the day that the staff cooked lunch for everyone.  He said, “We had chili with those black beans and those square crackers that have holes in them!”  I told him that the beans were probably kidney beans…….which he thought was quite funny……….and that the crackers were saltines.  Yet I know that the next time he tells me about kidney beans, they will be black beans……….and that saltines will the square crackers with holes in them.

He watched me make the green bean casserole for Thanksgiving dinner.  Shortly after that, he was trying to describe an omelet to me and the process of making it.  He said, “It was like those green beans we had……..all together.”  I understood exactly what he meant!

Telling me about the bread they had eaten at his group one day, he said, “It was French bread, I think.  Or garlic bread………..well, it was bread with black spots.”  I’ve learned not to be alarmed at the mention of black spots on or in a particular food.  Aaron describes most spices as being “black spots.”  He continued about the garlic bread…….”That garlic bread is strong in your mouth!” 

One day he was telling me what he had gotten to drink at the bowling alley.  “Mom, I got lemonade.”  That was unusual for him, so I asked him if he liked it.  He answered, “Lemonade has a strong and nasty taste………..I like it!”  OK.  Whatever you say, Aaron.

I returned home from a church event on Sunday afternoon and Aaron came down to talk to me……to be sure I was up on all the details of his day.  Finally, I asked him if he had eaten anything all day and he said, “Yes, I had some of that grey soup with those beans in it!”

Fortunately, I knew that he was referring to some Taco Soup that I had made……..which actually does have a tiny tinge of grey in it from the beans and their liquid.  But somehow, grey soup just sounds a little unappetizing to me.  I do wonder what people think when he tells them that his mom made some grey soup.  And again, it doesn’t matter that I said, “Oh, you mean the TACO SOUP.”  Aaron will still say “that grey soup” no matter what. 

We then had a discussion about the beans in the Taco Soup, which led him to remember a bean dish that he often sees in the deli at Wal-Mart or Dillon’s.  “You know, Mom, in that deli area?  It had some of those beans in a sauce kind of way……those red beans.”  Through some questions and a process of elimination, I finally realized that Aaron was talking about Baked Beans – which I reiterated to him several times.  Less than 24 hours later we were in Dillon’s, where Aaron happily saw some baked beans in the deli, and he exclaimed, “Mom!  There are some of those beans in that sauce kind of way!”  He didn’t even notice my shoulders slump as I once again stressed, “Yes, Aaron.  BAKED BEANS!” 

But he wasn’t through talking about fascinating deli food.  “Mom, they had those eggs with that squishy egg stuff on top!”  As tasty as that sounds, Aaron, there is a name for those eggs, too………..DEVILED EGGS.  He quickly says, “Yeah!” as he rushes on to the next food topic, and I know that he will not know the squishy eggs as Deviled Eggs the next time he sees them.

Yesterday he told me that there were some of the packaged nuts from his Christmas stocking that he did not like.  “You know, Mom,” he began.  Why does he always think that I know what he is going to be talking about, based on his crazy descriptions?!  Anyway, he continued, “I don’t like some of those nuts that were in my stocking.”  He paused as he waited for me to get with the conversation and ask him the question that he wanted to hear……….which I did………because if I don’t, it will just prolong the inevitable.

Which nuts don’t you like, Aaron?

“It’s those honey baked nuts.  They were totally baked!” 

Oh yes, Aaron.  The HONEY ROASTED PEANUTS.  I never exactly got a clear idea of why he doesn’t like them……….whether it’s the honey or the fact that they are totally baked.  Regardless, Gary is now the new owner of several packs of those honey baked nuts.

As we played Skip-Bo, he ate some Bugles chips.  But Aaron never calls them Bugles.  “Mom, these are those tornado chips!” 

Yes, Aaron……….those are BUGLES! 

He agrees and then says, “They look like tornadoes, don’t they, Mom?”  And I know that they are forever tornado chips in Aaron’s world. 

Today he was excited to show me what he had picked up at Subway……….a take-out menu and a nutrition guide.  He was fascinated with all the numbers on the nutrition guide, but I was happy for him to finally be able to discuss the various sandwiches by name………..not by how many black dots the bread had or if it had white mustard or that yellow cheese. 

Yes, Aaron………..the sub you get is a COLD CUT SUB.  On ITALIAN BREAD!  See?  There it is, in black and white.  Read it for yourself! 

I can only hope.

Returning to Normal

Today marks two weeks since my shoulder surgery.  Somehow it seems like the whole event happened much longer ago.  Then I stop and realize that it will be almost another two weeks until I can begin physical therapy, and that seems like a long way off.   Funny how our perceptions of time get all out of whack when our normal routine and world get shaken up. 

My surgery was more extensive than anyone thought it would be.  I had three tendons that needed to be re-attached; a biceps repair; and a very large bone spur taken out – or whatever it is that surgeons do with bone spurs.  I don’t need details.  The surgeon wants me to heal more before I start physical therapy, so that means longer in the sling/immobilizer with no use of my arm.  I’ve done very well, thanks to my amazing husband who does anything and everything to serve me and make life easier for me.  I’m learning how to do a lot with my left hand, which is not my dominant hand, and realizing that  I have so much for which to be thankful.  No crutches, for one thing.  I would be a hazard on crutches, primarily to myself.  My situation is not permanent, and for many people that is not the case as they find themselves minus a limb.  I am not undergoing months of chemo with an uncertain future ahead.  I have family and friends who love me, and have been so supportive both from near and far.  We have our huge Great Dane, Jackson, who sits by me and looks at me with sweet pity.  And I have Aaron, who causes me to be jerked back to reality daily.

Yes, dear Aaron……..whose world is all about…….Aaron.  Yet he has shown some surprising sides of himself over the past two weeks.  Before my surgery, I took him to Wal-Mart for a casual shopping trip.  He had some Christmas gift cards, but there really wasn’t much on this trip that he wanted.  Of course, he got some Skittles because Skittles are always important to have.  And he was very animated when we entered the produce department and he saw eggplants.  Yes, eggplants…….because they are unusual to him and they are a pretty color and he still remembers the summer that Gary planted an eggplant in our garden and it grew!  We didn’t buy an eggplant that day in Wal-Mart, but he was happy to hold it up for me to see…….and everyone else that was near us.

The day of my surgery, he bounded in the door as usual and I heard him come tromping up the stairs.  He came into the room where I was propped up in bed and launched right in to a rundown of his day.  To others, he would have perhaps seemed very uncaring because he didn’t ask about me right away………but I knew better.  I saw his eyes darting around the bed, taking in the sight of Mom not looking so great and the IceMan machine whirring beside the bed and the mound on my right side that was my surgery site.  He was taking it in and checking things out, and it was very vital to him to know that Mom was awake and could talk……..and most importantly, still had ears with which to listen to Aaron’s stories and questions and reviews of his latest movie that he has seen.  He popped in and out over the next few days, talking about his day at Paradigm or what he had eaten or what my opinion was concerning the possibility of aliens on other planets or whether I had any new information about global warming.  There is sameness with Aaron, that’s for certain.

He walked in one day to see my empty right shirt sleeve laying on top of the covers.  Coming out of the sleeve, where my hand should have been, was the hose for the ice machine.  This sight shocked even Aaron, whose eyes got huge as he blurted out, “Mom!!!  You don’t have a hand??!!”  We looked down and realized how shocking this looked, and then I showed him where my real hand was – all tucked into my immobilizer under the covers – and Aaron and Gary and I laughed and laughed.  Aaron was also very relieved to see that Mom was not missing a very necessary part!

At other times  he showed surprising tenderness.  He likes it when he and I use back scratchers at night to tickle each other’s backs.  One day he asked if we could “do our backs.”  I told him that I didn’t think I was up to that yet and he answered, “No, I don’t mean that you have to do my back.  I’ll just tickle your back.”  Well, my goodness!  I was surprised and pleased at that display of kindness, and I told him so…….which made him uncomfortable with pleasure.  He was also careful with goodnight hugs, being very slow and gentle with me instead of rough and brusque. 

He had one morning of non-compliance – the first morning that Gary went back to work and I was on my own again with Aaron.  I seriously wanted to walk away that morning as he challenged everything I said, and as his rudeness increased I became more and more exhausted.  He did go on to Paradigm when his ride came, angry with me even as he brushed out the door and uttered one more insult.  But when he came home, he was happy and acted as if the morning had never happened.  Since then he has been fine…….maybe he just needed to test the waters or his concern finally spilled out in his behaviors, as often happens. 

I never know what to expect when he comes home, but it almost always involves lots of talking and sometimes surprises……..such as this day last week when he was delighted to show me what his friend had painted on his face.  He told me about passing a school bus and how the children inside were staring at him on this day.  Yep, Aaron, I bet they were.
 
He is happy that I can now awkwardly shuffle cards, so Skip-Bo is sometimes a part of our evening here and there.  Yesterday we walked around our circle when he got home, minus our big dog, and it felt so good to be outside and to walk and of course, to listen to Aaron talk.  This past Sunday, though, I did not want to listen to him talk.  I had just settled in a chair with cushions and my blanket for a Sunday nap………and I heard his door open and then the unmistakable sound of his thumping down the stairs.

I kept my eyes closed, but Aaron doesn’t pay attention to those blatant hints.  He talked to me a minute, then thumped downstairs to talk to Gary, then back up to talk to me some more……despite my closed eyes.  Surely, I hoped, when he sees my closed eyes he will hush.  Instead, he settled himself on the arm of the couch near my chair and proceeded to talk.   I could feel myself nodding off and then realized that Aaron was saying, “…….right, Mom?  Mom?  Is that right?  There are lots of volcanoes in Hawaii, right?”
  
Yes, Aaron…….I could barely make the words come out………..there are volcanoes in Hawaii.  Then I felt myself once again being pulled down into sweet sleep,  only to be jerked up again with, “………so Mom…..Mom?…….earthquakes cause cracks in the ground, don’t they?”

Uh-huh…..I barely muttered.  His monotone voice began to drone again, making me even sleepier.
“…….is that right, Mom?  Huh?  Is that right?”

I agreed that it was right, not even knowing or caring about what I had just agreed to……….and he began to talk again about volcanoes or earthquakes.

For crying out loud, Aaron, please!  Can you not see that I’m trying to take a nap?

 

Unfazed, he said OK and got up, going back to his room.  Yet I knew I wasn’t dreaming when soon I heard that thump, thump, thump of him coming down the stairs again.  AAHHH!!!  I didn’t move and I barely even breathed as he entered the family room, walked near me, and stopped.  Then I heard him chuckle.   “HeHeHeHeHe,” he laughed in his deep voice.  I didn’t budge.  He walked toward the kitchen, stopped, and turned to walk back……..and as he passed I once again heard it……..”HeHeHeHeHeHe.” 
 
Then he was gone, thumping back upstairs not to return again……….and leaving me to smile and to wonder what that was all about.  You never know with Aaron.  He just called me as I’m writing this – called from Barb’s cell phone at Paradigm.  I asked, “Aaron, what are you doing?”  He answered, “I don’t know!”  Oh, Aaron. 

See, I’m not the only one that wonders what on earth Aaron is doing.   Half the time, he doesn’t even know!  Yes, things have returned to normal around here for sure.  

The Scientist Shot

I wrote a blog this morning about a surgery that Aaron had years ago and the funny nurse……but I lost it.  That is one of the most frustrating things ever!  And once I write something, and lose it, then I just can’t recapture it.  I won’t even try tonight since it’s late and I’m getting tired…….and I’ll be up early in the morning to trek over to the surgery center for my own surgery.   Rotator cuff.  I keep thinking about family and friends who have had such serious surgeries in their lives, and I know that I am very blessed to only be facing two torn tendons and a bone spur.  Remind me I said that when I’m in PT on Friday morning!

I imagine that Aaron will be very unsure about how to handle all this, especially when he sees me tomorrow evening in whatever shape I will be.  He’ll still be saying, “Mom!  Mom?  Mom!”  while he stands by my bed, hoping that I will be normal and can answer him and promise to play Skip-Bo or do our backs.  He will probably show very little concern about how I’m feeling, but he will be very concerned about how my situation will impact his world.  He won’t want his world to be askew in any way, and having Mom unable to function as I normally do will impact him a lot for awhile. 

I imagine, though, that once Aaron realizes that I am not able to move around as quickly as usual, then he will use the opportunity to sit and talk to me…..and talk…….and talk yet some more.  Maybe my meds will dull it somewhat.  And I don’t really mean that……only a little bit.  He sure can go on and on and on about whatever is on his mind.

Like on the way to his group the other morning as he started reviewing a movie he had watched.  “Mom!  That scientist gave a shot in the scientist way.  You know that scientist way that a scientist gives shots?!”  I said yes, although I really have no idea what the scientist way of giving shots involves since I’ve never had a scientist give me a shot in the scientist way………and I’m hoping that there is not a scientist anywhere near the operating room tomorrow!  That’s because Aaron continued, “Mom, after that scientist gave that shot…….you know, in that scientist way………..that man became a monstrous mouse!!!!!” 

Aaron continued to talk about that monstrous mouse that developed after that scientist shot until we pulled up to meet his group.  I had to nearly push him out of the van!  That scientist shot that resulted in the monstrous mouse had certainly made an impression!  I do not want to hear this story again while I am confined after surgery, drugged or not.

This was the same morning that Aaron also said, “Mom, I read something last night that got me tired.   I was totally tired!  My eyes were falling!!!”

I think that if I have to listen to Aaron regal me with tales of scientist shots and monstrous mice and  other stories from the wild world of Aaron’s genetically altered movies……….then my eyes will fall!  And since I’m already about to pay the price for one fall, I do not want to add my falling eyes to the list of my needed repairs! 

I wonder if the surgeon will write me a prescription for ear plugs?

Love is Too Dumb!

Emotions are the nebulous workings of our inner being that manifest themselves outwardly in many ways, as we all know and experience daily.  For the typical person with Asperger’s, emotions are very difficult to feel or to manifest.  Anger and outbursts, along with being very blunt, do occur.  But the very normal emotions that we have, such as empathy or love, often stay buried deep inside the person with autism.  I am convinced that they feel these emotions, or some variation of them, but their inability to process and to display these feelings like we do often make these special persons appear to be unloving, for instance, or uncaring. 

Recently, while Andrea was still here for Christmas, Aaron was asking his usual question as we drove to meet his day group.  “Mom, can you and I do something tonight?  Maybe play Skip-Bo or do our backs?”   I told him that I wasn’t sure because Andrea and I had rented some movies that we needed to watch before she returned to Texas.  Then I told him that he was welcome to watch a movie with us that evening.

He quickly sniffed in disdain at that idea, explaining that he bet we were going to watch a movie about love.  I asked him what was wrong with a movie about love and he wisely explained, “Love is too dumb in love story movies!!”

I laughed and then tried to discuss the merits of love, but he would have none of it.  No love story movies for Aaron!  He’ll take aliens or genetically altered, ravenous mutations any day over love and kissing!!

Saturday afternoon, Andrea was all packed and ready to head back to Texas.   She went upstairs to say goodbye to Aaron, who continued to play his computer game while she stood there telling him that she was leaving.  She asked him if she could give him a hug and he just gave his deep, throaty chuckle……….but no hug from him as she gave him a squeeze anyway.  She understands this about Aaron……..about how uncomfortable he is with these displays of emotion.  She laughed as she told us about it.

Yesterday Aaron stood by the table in the kitchen where I was working on something.  He wanted to talk.  Well, he always wants to talk but sometimes he wants to really talk…….you know, about something that is on his mind beyond aliens or weather or global warming…
“Mom, will Andrea come over again?”   I assured him that, yes, Andrea would come over again but we don’t know when.  School starts again tomorrow and she’ll be very busy, I told him.

He continued, “You know……Andrea……I noticed……she seems to like me.”

Well, of course she likes you, Aaron!  She likes you a lot!

And he said, “She uses that word……….I love you.”

There was that small glimpse into Aaron’s heart that he sometimes allows us to see.  Aaron may not use that word often…….that “I love you” word.  But he does understand its significance and he does love to be told that he is loved.  He rarely returns that “I love you” word, but he does keep it in his heart each time that it is spoken to him.  And after all, isn’t that what is most important………..that he is told and he knows that he is loved?

As a mother of a child of whatever age with whatever special need, we don’t always receive many outward expressions of love or appreciation.  But it’s not about us, is it?  It’s about these precious people that God has entrusted to us, to love and to nurture and to train and to protect.  We show them love……….the love of a parent and the love of God……….knowing that we may seldom if ever receive that same love in return.

But they know…….they know if they are loved, and this love warms their hearts just as love warms our hearts.  Sometimes Aaron is hard to like, but I will never stop loving him.  And I pray that I will never stop telling him that “I love you” word that he seems to most often ignore. 

He says, “Love is too dumb in love story movies!”  But I don’t believe for a minute that he feels that way about his own heart. 

How About We NOT?!

Aaron stays true to his autism roots by having routines for almost everything.  Honestly, it sometimes nearly drives me nuts!  At other times I realize that at least I can predict what he is going to do in a given situation……..such as the way he idles over to the silverware drawer before a meal, and as quietly as Aaron can be quiet, he opens the drawer………. and as gently as Aaron can be gentle, he removes a knife and a fork and a spoon, and then tries to hide them as he softly as Aaron can be soft, walks over to the table and tries to sneak them beside his plate…….where they join his other silverware already there, but that never is enough.  And Gary and I have our own little routine after this routine occurrence……….the routine of looking at each other as we routinely roll our eyes.  Then we sigh and move on to dinner, where Aaron uses his extra silverware…….maybe…..but if not, he is satisfied that it is there as he uses a different utensil for each food item on his plate.  I won’t even go into the napkin and the toothpick routine.

Then there is his toothbrush routine before bed each night.  He puts the toothpaste on his brush, holds it under the water, and proceeds to brush as he is also opening his drawer by the sink.  In this drawer lays his towel, the towel with which he repeatedly wipes the sides of his mouth as he brushes………..because he can NOT get any toothpaste on the skin outside of his mouth.  He furiously scrubs his teeth, even though the dentist has told him to quit scrubbing so hard.  And he furiously rubs the escaping toothpaste from his skin with his trusty towel.  He also spits several times during the brushing in order to get rid of all the extra bubbling toothpaste in his mouth……….and this results in even more rubbing of his skin with the towel.  When he is done, he turns the faucet on full force as he fills a cup and swishes the water in his mouth and enjoys one more spitting session and one more furious towel-cleaning swipe.  And if one speck of toothpaste is on his hands, he will end the evening with his hand-washing ritual.  It’s exhausting!

Last night as he was getting ready for bed and it was time to brush his teeth, he realized that Andrea was in their bathroom with the door closed.  He waited…..and still the door was closed.  This was not fitting into his bedtime routine at all.  He waited a little longer, and then informed me that he could not brush his teeth because Andrea was in the bathroom.  I told him to just wait a couple more minutes……….and I may as well have told him to walk to the moon and back, and then maybe he could brush.  He was not happy, to put it mildly.

I was in our bathroom, and our bedroom door was locked when Aaron tried to open the door……and then knocked.  He rarely knocks first and then opens……..and this is why our door was locked.  Anyway, as I had just told him that he could wait a few more minutes before he brushed, he knocked on our door and then said, “How about we not??!!”  He couldn’t see me, so I openly chuckled and then told him that yes, he COULD indeed brush his teeth……..even as Gary reminded me that we have extra toothbrushes under our sink.  Opening our door, I told Aaron to just come in our bathroom and use a new brush.

He reluctantly and unhappily agreed as he followed me into our bathroom.  He took the new brush on which I had already squeezed some toothpaste.  I even held it under the water for him.  He then reminded me that he needed a towel……….and I reminded him that he could just use Kleenex that were sitting nearby.  He began to furiously brush, partly from routine and partly from anger.  He reached over to the Kleenex box, yanking out one Kleenex and then another and another and another until I told him to stop.  He rubbed off the offending toothpaste, and threw the barely used pile of Kleenex away.  More furious brushing ensued, and then he grabbed a fresh wad of Kleenex.  I just HAD to tell him that he was wasting Kleenex.  That comment came just before I couldn’t help but smile……….which he saw…….and which only added to his frustration.  His entire tooth brushing routine was in crumbles and his mother is smiling! 

So he spit and then blurted, “You are SO weird!!”  This was followed by turning on the water full force, swishing and spitting his water with much emphasis, and then washing his hands.  He used four or five squirts of hand soap, washed and washed………….then another four or five squirts of soap, and more furious washing under the water that I had turned down.  It took him awhile to be sure that all of the soap was removed, and then to totally dry his hands.  He had no idea of the effort it was taking me not to fully laugh out loud.  I wanted to say, “WHO is weird??!!” 

Of course, I did not say that……..not out loud.  I only said it to myself and then was able to laugh as he walked up the hall, and I re-locked our bedroom door.  There in our sink was the evidence of his out-of-routine tooth brushing escapade………..the pile of soft bubbles would take awhile to wash away.  And the pile of Kleenex in the trash can was further evidence of what had just occurred……..which was Aaron having to adapt to an uncomfortable situation which was anything but routine.

I know it’s good for Aaron to be stretched in these ways that seem simple to me, but are anything BUT simple to him.  It’s good, too, for me to see how these breaks in routine affect him and how they cause him distress.  It helps me to understand him even more and it further confirms to me what is important to him.

 Oh, and I now know that he thinks I’m weird………but that’s also pretty routine.   

Do You Want to See My Bruise?!

Last Friday morning, Aaron and I headed to the lab where he gets his blood work done.  His levels need to be checked since his unexpected seizure that I wrote about in my last blog……..the seizure that made him fall backwards and sustain a nasty bruise on his upper back.  Aaron loves going to the lab and for that I am very thankful.  He doesn’t mind needles……he never has…….and this is indeed a huge blessing.  It would be heart-rending to see him fearful of a procedure that he needs so often. 

Aaron loves time in the van with me or with Gary in his truck.  We are captive audiences, after all, and have no choice but to listen to his constant talking in the midst of whatever favorite CD he has chosen.  As we passed Walgreen’s, Aaron saw the sign that asked the question:  Have You Had A Flu Shot?  Of course, Aaron felt compelled to answer this question because naturally every question deserves an answer in Aaron’s mind.  And his answer must be shared with whomever is willing to listen.
 
“Mom, that sign talked about a flu shot.  Have I had a flu?”

Well, Aaron, you don’t have “a flu” like you have a cold.

“So what is a flu?”  he asked.

I explained what THE flu is and why it’s different from having A cold………..and realized that only with Aaron would I even notice this distinction.  It makes sense.  Why do we say THE flu and A cold?  Oh my………I’m thinking like Aaron again!

I was rather proud of my explanation as we drove along, and then when I finished and hoped that Aaron would appreciate me for clearing up this confusion about THE flu and A cold – he said, “If I go to Burger King again, can I have a number 2?”

I was immediately jerked from Walgreen’s to Burger King with the blink of an eye!  I’ve learned to follow Aaron as he transports quickly from topic to topic, but I still smile at the randomness of his topics.  He was still relishing his special Burger King supper with Dad the night of his seizure.  Gary was concerned that night because Aaron was confused about how to use the drink machine, an art that Aaron has perfected for sure.  His confusion was alarming to Gary.  Sometimes seizures have that effect and we wonder about long term issues.

Anyway, I laughed as I heard Aaron’s question and realized that he assumed……….as always…………that I would know immediately what a Burger King number 2 meal contained………..as opposed to a Wendy’s meal number 2 or a McDonald’s meal number 2.  Of course, Aaron has recorded this info in his brain.  Hasn’t everybody??!! 

He continued, “Do you want a number 2?”  I asked him to remind me of what a Burger King meal number 2 contained before I committed.  This kept Aaron busily talking until we arrived at the clinic, parked, and began walking toward the door.  Aaron had chosen another favorite topic of late of which to chatter……Neil Armstrong.  Does Neil Armstrong have anything at all remotely to do with a Burger King meal number 2?  Of course not!!   

“Mom, I was reading about Neil Armstrong on the moon.  Did you know that when he walked on the moon he said something?”

Yes, Aaron, I knew that.

“Did you know that they didn’t put an ‘A’ in what he said?  He really said………..”

And as we checked in to the lab and sat down, Aaron continued to inform me of what Neil Armstrong had really said and why it was so significant that “they” had left out the ‘A’ in what Neil Armstrong said………….and he continued in this vein (pardon the pun) until someone walked into the waiting room that I know.

Aaron perked up as I spoke to this woman whom I know.  Ah, fresh ears!  If Mom is going to talk with familiarity to this woman, then surely Aaron can, too!  So at the first opportunity, as I told her why we were at the lab, Aaron expounded on his seizure occurrence…………and anything else that popped into his ever active mind.

I was called to the check-in desk to answer some questions, so as my back was turned and I answered the questions, Aaron had decided that this friend with the listening ears would surely want to see something special.  As I turned around to walk back to my seat, there stood Aaron in the middle of the waiting room.  He was preparing to lift up his shirt and show this kind, unsuspecting woman his prize bruise.
 
Now Aaron has done this before………….lifting his shirt to show someone his VNS surgery scar on his upper chest.  He does this very quickly, before we can react, and the effect is amazing.  We have never received any one’s therapy bill after this event, so that’s a comfort, but still I know that seeing Aaron’s full stomach and chest without warning can be rather shocking.  And here he was, in the middle of a waiting room with other people around, preparing to lift his shirt and show my friend his bruise.

In my mind I was yelling, “NOOOOOOOOOOOO!!!”  but in reality I hurried over and gently told Aaron no…………do not lift your shirt to show your bruise.  He thought that this was indeed a waste of a perfect opportunity while I thought that I was a very blessed mother for being able to turn around when I did and avert this shock to an entire waiting room full of wide-eyed, puzzled patients. 

The fake farting noise that Aaron made later as we exited the building……….and that echoed down the hall……..was mild in comparison to the near-exposure that we had endured in the waiting room.  We were, after all, walking away and leaving it all behind (pardon another pun).

Dear Aaron – you have no idea of the effect you have on people.  I will be very relieved when I can tell you that your bruise is gone and can no longer be seen………by ANYONE!!!