Category: Adult Autism

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!!!  

The Personal Gift of Aaron

We were talking at supper last night, as we watched Aaron stuff pizza in his mouth, about how quickly Christmas zoomed by this year.  It’s like a big meal that takes hours of planning and prep, and then is over in a few minutes.  We had a great time having Sandra, Gary’s sister, here for her fifth year in a row.  We love having her come…………we’re surprised that she keeps coming!  Not really, but we laugh at all the mayhem that sometimes ensues at Christmas with the shopping and the cooking and the wrapping and the everything else.  Plus this year we had Darcy,  Andrea’s little dog, thrown in the mix along with our Great Dane, Jackson.  And Aaron…….always our Aaron……with his many facets that either delight or depress or demand.
 
Aaron was still trying to figure out Christmas carols as our holiday preparations were gearing up and I had Christmas music playing all day long.  Literal Aaron thinks that some of the words to our carols are quite ridiculous.  We were playing Skip-Bo one night and I had Pandora cranked up to a favorite Christmas station when he heard The Christmas Song.  When the phrase “……to kids from 1 to 92….” was sung, I heard Aaron go, “Hmpfff!!”  And I prepared myself for either laughter or rolling of my eyes as I awaited his comment.

“People at 92 years old aren’t kids, right?!”  I began to explain what that phrase meant when he continued with his commentary on this ridiculous song – “I think they’re warning people who are at the age of 92.”   ” Warning of what?” I asked.  But he really couldn’t explain what he thought and he certainly wasn’t getting my reasonable explanation, so finally he just admitted that he really didn’t get it, even as he repeated what he so often says about our weird world………..”That’s DUMB!”

He enjoyed “Ding Dong Merrily on High” more, though, because at least he thought it was rather funny.  “That ding dong song sounds like an alarm clock!”  he blurted as he laughed at yet another silly Christmas song.  I laughed, too, as I looked once again at our mixed-up world through Aaron’s eyes.

Aaron’s Aunt Sandra makes beautiful scarves.  She brought some for Andrea and I to have.  Aaron saw them on my desk the next morning and walked down the hall, carrying the pile of scarves.  “Mom!  Did you build these for me?” he hopefully asked.  I assured him that I did not build them, but that Aunt Sandra had made them for me.  He was disappointed………such interesting, curly scarves would have been fun for him to own, he thought.  “Are they like the Hawaiian women wear and then they dance?”  he asked with even more hope.  And again I assured him that they were not Hawaiian scarves and that I definitely would not be dancing a Hawaiian dance when I put on a curly scarf.  He laughed at this funny thought.

Aaron did very well with going to his day group when Sandra first arrived.  He often wants to stay home because she is here, but this year he was more controlled and willing to go.  Having pizza one day with his friends at Paradigm was a great pay-off.  He excitedly told me about it when he barged in the door that afternoon.  “Mom!  We had pizza!!  First I had one piece and then I had four!  They wouldn’t let me have a fifth.”  I reminded him that no person, especially him, needs five pieces of pizza.  And he is further convinced that our world is indeed without any understanding.

The next day we had a little snow and I knew that Aaron would not like this.  He doesn’t want to get out in the snow, often acting like an old man who can’t bear the thought of the cold and the mess.  Sure enough, I heard him knock on my bedroom door as I got ready and then heard his low, depressed, monotone voice as he said, “I do not want to leave this warm house.”  He was very flat………very resigned……..very certain about this fact.  I dressed and then went out in the hall, where I found his door closed.  I opened his door and found Aaron in his bed, all covered in his warm blankets……….but smiling as I patted his shoulder.  His smile showed me that he was finding this all to be funny and I was relieved that we were not going to have a small war over this issue of the messy, cold snow. 

He did go to Paradigm that day, happily, and later in the week he ended the season there with a Christmas party.  He came home very animated as he held up his Wal-Mart gift card and his stocking with his name on it………..and which he decided that he wanted to give to visiting Darcy, who didn’t have her own doggie stocking.  He liked the food, too, especially noting some fascinating cookies – “Mom, we had cookies that had whiteness on them!”

Christmas Eve was, well, interesting.  Aaron was very happy about the bustle and activity of the day.  He came down from his room from time to time to talk, of course, or to play with Darcy or Jackson.  He was very intrigued by Darcy’s dog toy.  “Mom!  Darcy’s dog toy has warts!”  And he was also fascinated by the Polish sausage that I was putting in my spaghetti sauce.  “Mom, are you putting that bent hot dog in the spaghetti?!”


Andrea was not home during the day, as she was visiting her friend James and his family on their farm near Salina.  Aaron asked where she was and he did not like the fact that Andrea was not at home……….and he definitely did not like it when I told him that James would be joining us for supper and for the evening of games and fun.  It was hard to tell why he reacted so strongly, but I believe he feels an ownership of Andrea.  He sees her as a mother figure who is there for him when she is home.  James was an intruder who took Andrea away from him……..a stranger who was going to make life uncomfortable for Aaron during our special evening.

Sure enough, Aaron was less than enthusiastic to meet James.  During dinner, as we talked and laughed, Aaron kept muttering comments to me about this situation.  Thankfully, Aaron didn’t have a full blow-up about James, but he was certainly not happy with this turn of events.  It would be so helpful if Aaron could just express his feelings verbally…….but he usually can’t do that, at least not right away.  So we tensely muddled through the moment, hoping that Aaron was not too terribly embarrassing to us or to our guest.  And what a blessing that Andrea is very understanding of Aaron, and was able to smile and put us all at ease.   

Later we played Christmas Bingo, and once again Aaron was very unpleasant.  He doesn’t like parties, as he sees the laughter and the silliness that may ensue as being abnormal.  Yet he wanted to join us, even as he sat there making comments about how Gary called out the Bingo moves and being very rude when we tried to calm or correct him.  We were honestly relieved when Aaron went back up to his room and we could continue the evening without worrying about Aaron telling us all very ungraciously about how weird we were and that we needed to shut up!

Christmas day found Aaron a little unnerved because we decided to open gifts in the living room instead of the family room.  Change!!  And change does not go over well with Aaron!  The family picture in front of the Christmas tree was an exercise in futility for us, as Aaron did not want his picture made when it was just time to get on with the gift opening.  And opening gifts, for Aaron, involves a process.  He must have his little Swiss Army knife for cutting the paper; and he must open each DVD or PC game right away with his knife;  and he must put the DVD wrappings and tape in his trash can from his room that he has sitting right beside him.  He shows very little emotion as he continues his mission of opening his presents from beginning to end……….and then it is over and he must move on to the next day’s event.

The day after Christmas, Aaron was up and about as usual.  He drank his coffee and he took his pills and he talked a lot as always.  He was upstairs talking to Andrea, as normal as ever, and then walked down the stairs………..and we heard an awful crash.  Aaron was having a seizure.  He had fallen backwards at the foot of the stairs and was laying there on the hard floor, seizing.  It was terrible and was very frightening to all of us.  Aaron’s seizures have been in his sleep for years now, so this breakthrough seizure was very surprising.  He finally stopped and Gary placed a pillow under his head as I covered him with a blanket.  Aaron is too big for us to move, so he slept there for awhile as he recovered from this episode.  We checked him for blood and we worried about a concussion, but later when he was able to be helped to his bed we felt that he was all right. 

He has an ugly bruise and some scrapes on his upper back from hitting a piece of furniture when he fell.   We are very thankful that there was no major injury to him from such a hard fall.  I’ll be taking him to the lab for some blood work to check his levels.  Keith, Aaron’s nurse practitioner, told us not to be alarmed at this seizure and not to assume that these will continue.  We hope this is true.  This episode has made us face an element of fear that we haven’t had for a long time.  It makes us realize how serious seizures are and it jerks us back to the reality of how fragile Aaron’s health is.  How fragile, and how very dangerous and serious.
   
And our love for Aaron was confirmed as we struggled emotionally, watching him lay on that cold, hard floor both during and after his seizure.  He yanks us around a lot…….one minute we are laughing because of Aaron and the next minute we are so frustrated with his behavior.  The frustrations melt away when we see him so vulnerable. We know that life for Aaron will never be normal or easy.  Life for Gary and I will never be normal or easy.  But it’s the life that God has chosen for all of us……….for Aaron, for Gary, for me, and for Andrea and Andrew.  I pray that we will trust God as we travel this road, and that we will bring glory to God as He enables us to move forward.
 
Christmas is a season of light and of hope.  Aaron points us to that light and hope in ways of which he is totally unaware.  Whether through our joyful laughter or through our gritted teeth, Aaron does have his ways of pulling us back to Him on which our dependence lays.  And I believe that Aaron will receive a great reward for fulfilling that purpose of his life. 

 Christmas is also a season of gifts………..and Aaron is our gift, one which we continue to unwrap and try to understand every day.  He comes with a no-return policy and on some days, that’s a very good thing!  On Christmas Eve, I told Aaron not to come in the bedroom where I was stuffing the stockings.  He replied, “So you said you were doing my personal present?”  He was sweet and hopeful. 

God has given us a personal present in the gift of Aaron.  Even on the hard days, we are especially blessed. 

We love you, Aaron!

Please Say Mistletoe is Fake!

It’s the Christmas season………..the time of lights and joy and warmth and presents……..and Aaron trying to figure out Christmas carols.  In Aaron’s  literal world and in his world of showing minimal emotion, Christmas songs seen through his eyes can be very interesting.

Comments from Aaron can range from the style of singing:  “Hmmpf!  Why is she singing like opera?” ……..to all the unfettered emotion of a particular song:  “Hmmpf!  Why did he say that?  That was dumb!” 

For instance, there is the strange subject of mistletoe.  We heard a Christmas song one day in the van and the benefits of standing under the mistletoe were being gleefully proclaimed.  Aaron does not share this glee.  To Aaron, mistletoe is weird and kissing is positively unthinkable.  As the song progressed, Aaron blurted, “Oh brother!!  They’re talking about love again!!”

I chuckled and just remained quiet.  Aaron did not.  “Is that thing about mistletoe true?”   So I tried to explain mistletoe to Aaron, briefly. 

He responded, “I thought it was a religion or a myth or fake!”

I am sure that he hoped beyond all hope that it was fake.  I offered to hang us some mistletoe at our house but he was not at all in favor of that idea. 

Of course, he’s on the Christmas countdown.  He will be talking to me and then as he walks away he will blandly update me by saying, “It’s 19 days til Christmas.”  Yesterday as we listened to the 12 Days of Christmas song,  he had some commentary on how silly that song is.  He continued his conversation with Gary at supper.
“Dad, there was that song about the first day of Christmas.  Then they made it to the end of it at 12! “

Gary assured him that he knew that song as Aaron continued, “So what’s the point of it?  Is it so we can count?”  And before Gary could really begin to straighten this out, Aaron said, “And who would know how to wear five rings?  No one needs five rings!!!” 

I had earlier tried to tell him that it was based on other cultures who celebrate Christmas for 12 days.  Not remembering which culture does that, as I racked my brain for this piece of trivia, I said that it might be Russian culture……..to which Aaron replied, “Russian TORTURE?!” 

Torture might actually be an apt description for how some of these familiar songs affect Aaron.  We just sing along happily while Aaron is over there dissecting each song and trying to figure out the meaning to these crazy phrases………….and vowing to avoid mistletoe! 

Relax, Aaron!  And Merry Christmas!
 
I’ll get back to you on that thing about the partridge in a pear tree. 

The Keyboard and The Cold

Today is Monday, and I am fairly certain that I know how this day is going to go.  It has nothing to do with my plans for the day, which include a hair appointment and the exterminator making his two-month visit and a way too long to-do list.  It has everything to do with the fact that Aaron has a cold and is staying home today, which makes him very happy.  But there is one thing that would make him happier and so this one thing will consume his thoughts, which will in turn shape my day.  This one thing, this huge thing, is his keyboard.

Aaron’s computer took its last breath over a week ago.  Aaron even demonstrated to us several times the unusual noise that his computer made as it breathed its last.  His rendition was quite hilarious, as Aaron would say.  So Gary, our computer pro (thank the Lord!), diagnosed Aaron’s computer as dead…….very dead, of unknown causes.  Aaron took the news well, especially when he heard his dad say that he would fix it – one way or another.  After all, we have to live with Aaron.   It turned out that Gary had to order a new computer and many parts and pieces, which he somehow knew how to put together (thank the Lord again…….and Gary!).  I have no idea how Gary has this knowledge, but I do believe he was just born with this innate ability to be able to put almost anything together.  I walked downstairs one night after the parts arrived in the mail and found Gary with multiple screws, most very small, and lots of computer-looking things laying around………….and I wondered how this was all going to turn out.  But he did it and now Aaron has a new computer. 

We remove Aaron’s keyboard from his room every night because if he has his keyboard in the morning he is very grouchy.  This routine works  well and Aaron has come to expect it.  He knows that if he has a good morning, then when he returns from his group, his keyboard will be on his desk – just waiting for him!  And now with his new computer, and having been without a computer for many days, he is totally enjoying  his games again. 

This past Friday,  Aaron woke up with a mild sore throat.  On Saturday, the sore throat was worse and now he has a bad cold.  He has still been playing his Lego Star Wars game, but has also been sleeping more and coughing more, and of course, snorting more………….snorting a lot.  And telling us over and over again that he doesn’t feel well.  He has to be sure that we don’t lose sight of that fact.

On Friday night, after gorging on popcorn at the movie with his group that afternoon, and then gorging again when he was invited to Elijah’s house for the evening, he burped.  He burped and then he informed me, “Mom, hot acid just came through that place where my throat is sore.” 

Well, that’s just gross, Aaron!  But he is puzzled at my reaction.  Facts are facts, Mom.

Last night he said, “I hate my breath.”  I was about to say that I do, too………..but I refrained.  He then explained, after I asked, that he doesn’t like how it feels to breathe when he has this cold……….all stopped up and then coughing, too.  So he hates his breath.  Only Aaron would say it in such a way, and I smile.

I told him that he could stay home today since he is feeling so poorly and having breath issues.  This news made Aaron very happy.  He loves his group but he does love being at home, especially when he doesn’t feel so well.  However, the main thing on Aaron’s mind is his keyboard………..his keyboard which is laying on my dresser and not on his desk. 

He lumbered downstairs early this morning and sat at the kitchen table with me.  “I don’t feel so well, Mom.”   I totally expected this.  I almost said it for him.  He brightened when I told him that I was aware of how he feels and that he was staying home today.  And he replied, “I’m not going to ask for my keyboard today.  Am I?”
  
We had a little stare-down.  I was totally resigning myself to my future for this day, and Aaron was completely unaware.   He continued by asking, “What do you think?” 

Believe me Aaron, you do not want to know what I am thinking. 

I assured him that he could have the keyboard later in the day, knowing very well that I have not heard the end of his keyboard comments.  This is my lot for today.  And sure enough, as I folded a load of laundry he said, “Mom, can I have the keyboard later?  I’m not making you!”   This, and various other keyboard references, have already been a part of my morning.  He also said, “Mom, I like my new keyboard box.  It has a cute light where I turn on my keyboard.” 

A keyboard box.  This is what he calls his new computer.  I could never make up the words that he uses to describe things, and I smile even as I tuck that description away so that I can share it with Gary later.

Aaron decided to go out to the mulch awhile ago.  “Mom, I’m going outside.  Can I have my keyboard later?”  And just now, when I heard him come in, he was soon asking, “Mom, I’m going upstairs.  Can you put my keyboard up?”

Aaron is tenacious, that’s for sure.  He holds on to his ideas and desires until we let go.  He may change his approach, as he just said, “Mom?  How ’bout you do it after your shower?”  I know he works better if he has a definite time frame to work with.  He doesn’t allow us the freedom to be vague. 

Here he comes again.  Like I said, this is my day.  Gotta love Aaron!  And I better get something concrete set in place regarding his keyboard, real quick! 

So goes my day.

Grandma Einstein

The other night I went into Aaron’s room to tell him goodnight.  There he was, all propped up in bed with his special fuzzy black pillow behind his back and all his other items around him in the particular order that he likes.  I walked around his bed to get to the side on which he sat so that I could hug him……..and as always, he never looked up from his reading to acknowledge that I was there.  I hugged him anyway as he continued to read and I said, “Goodnight, Aaron.  I hope you sleep well.  Love you.”  To which he replied, “Hmmm – OK.” 

And as so often happens, when I started to walk away he perked up and said, “Mom!”   Which means that I must stop and turn to face him while I wait for him to continue.  And wait.  And wait.  And finally he said, “Mom, I bit my lip while I was eating nuts.  See?  Is there a bite point?”   He poked his bottom lip out so that I could perhaps better see the bite point.  I leaned down and looked at his lip as he pulled it downward, hoping that surely I would see the bite point and have some empathy for his pain.  All I was seeing was the rather gross view of the inside of his lip, even as I wondered where he had stashed his peanuts.  Well, I did see a little something on his lip so I told him that yes, I think I saw the bite point……….and he was satisfied. 

He immediately held out the book he was reading – his Handy Answer Science Book – and said, “Mom, look!  I’m reading about that scientist.  You know…..the one named Einstein.” 

Yes, Aaron, Einstein was very smart.

Aaron responded, “But he had really funny hair.  Einstein looks like a girl!  He looks like a Grandma!”

I apologize to you Grandmas out there.
I tried to explain a little about Einstein to Aaron, but he was totally immersed in the thoughts of Einstein’s wayward hair and how much he looked like a girl……..a Grandma girl, to be precise.

Aaron has a very inquisitive mind and we often tell him that he is very smart because of his curiosity………..like Einstein.  A few days after our Grandma Einstein conversation, I again told Aaron that he is very curious and smart……to which he replied, “Like when I know that if you drink lots of water, your pee is clear?”

Good grief.  He sometimes leaves me speechless.  He stood there, very proud of the fact that he knows this scientific information concerning the relationship between the volume of water one has drunk………..well, never mind.

Speaking of which, Aaron has always had a certain fear of toilets.  He is absolutely terrified of a toilet overflowing.  He is also scientific enough to know that when the water volume is very low, then the toilet is probably stopped up.  In addition, he is also scientific enough to know that this probability is directly related to the amount of toilet paper that he sometimes tries to get the toilet to accept without overflowing.  He has learned that toilets have limits.  Small amounts of water in said toilets usually mean that these toilets have reached their limits, and the next flush may be disastrous.  His worst fear is then realized.

In his bathroom, there is a fairly new toilet that has a low water volume.  Aaron does not trust this toilet……..at all.  The other night he said, “Mom, I used your and Dad’s bathroom.”  Now this is nothing new and I wondered why he felt the need to share that information.  I told him once again that he should use his bathroom…….his nice, new bathroom that is all his now.  I asked him, “Aaron, why don’t you like to use your toilet?”   And he matter of factly answered, “Because the water is quite low, actually.”

I laughed.  He sounded so much like a professor…….an Einstein without the Grandma hair, reading his Handy Science Answer Book and sharing with his mother some of the things he has learned.  He is curious, and he is literal.  The other night it was,  “Mom, I was reading about the periodic table.  That’s a funny name for a table.”   I guess he thought of this fact because we were playing Skip-Bo at our kitchen table, which reminded him of that strange table he had read about………the periodic table.    I assured him that the periodic table was not a table at all, like our kitchen table, but was a chart. 

“A chart?” he asked.   Yes, Aaron, a kind of chart…….you know, a chart…….on paper.   He thought for a few seconds and then said, “It’s not a normal kind of table.” 

Ah, literal Aaron.  A table is a table is a table…………so a periodic table is some kind of strange table, not a normal table.  Forget the chart idea, silly mom!  So I didn’t press the issue or try to explain it further, as I have in the past.  Explaining the elements and their symbols to Aaron was a bit much that time, I remember.  It made me want to pull my hair, but then he’d say I was looking like Einstein.  I mean, I am a girl…………old enough to be a Grandma girl.
 
Let’s talk about toilets, Aaron.