We Go AHEAD One Hour?

Aaron is very particular about time.  He keeps a running list of the time he goes to bed and the time he gets up.  He is rarely without his wristwatch, worn halfway up his arm.  He is very precise when he states the time that he does something, such as, “Mom, I quit reading at 10:43 and went to bed at 10:44.”  If I say, “So, you went to bed around 10:45,” he looks at me as if I am rather dense and then says, “No!  I went to bed at 10:44!”

Notice where Aaron wears his watch
 
If he is tired of wearing his wristwatch and he comes out of his room to do something, he will often carry his watch with him.  This is what he did one night recently when we were playing Skip-Bo.  He very carefully set his watch up so that he could see it, and then he would give me a time update.  “Mom, it’s 9:36.”   “Mom, now it’s 9:43.”  “Mom, it’s 9:52.” 

“So it’s almost 10:00?” I asked.  And true to form, Aaron answered, “No!  It’s 9:52!”

Sheesh, Mom!!!

 
At the theater, Aaron will sit with his popcorn perched on his lap……..but not eating any.  He then gives a rundown of the time as he often glances at the lighted clock on the wall of the theater.  “Mom, what time did you say the movie starts?” he asks.  I tell him the time and he watches that clock, mentally ticking down the minutes.  I will be happily munching my popcorn, but not Aaron.  That’s because Aaron will not start eating his popcorn until the lights are dimmed and the movie actually starts.  This is his unwritten popcorn rule, and the reason that he is so concerned with time at the theater. 

So it’s no wonder that our time change this weekend was slightly stressful for Aaron, and more than slightly stressful for me.  I told him on Saturday afternoon that we would be changing our clocks ahead one hour that night.  This is nothing new to Aaron, of course, but it always throws him.

“So we go AHEAD one hour?” he questions.   I told him yes, and he stood there pondering this change. 

“So when I go to bed at 10:00 it will really be 11:00?” he asked.  I said yes again, trying to be very low key as I watched him mentally processing this disturbing information.

Later that evening, as we played a game of Skip-Bo, he was getting nervous.  He knew that 8:15 was really 9:15, so each ticking minute was causing him some stress.  He was glad when we were finished and he could zip up to his room to take care of a couple things on his computer.  Soon, though, he was thumping back down the stairs.

“Mom, it’s 9:46,” he said to me.  He stood there waiting for my response.  I knew what he was thinking, but I didn’t react. 

“Well,” he continued, “that means it’s really 10:46.  I need to go to bed!”  I have rarely seen him so eager to take his pills, brush his teeth, and get in bed.  He hardly even read his Handy Answer Science book because his clock that was now set to the correct time was reminding him that the previous 9:53 was actually now 10:53.  For crying out loud, it was time to turn off his light and go to sleep!!

The next morning he didn’t get up until 7:41, to be precise……as Aaron always is.  He came downstairs to find me looking at the Sunday paper………and he was not in a good mood.  All this time change and then sleeping later did not sit well with Aaron.  He asked about coupons in the paper, which he always clips for me, but he asked in an impatient manner.  I told him that I wanted to look at the coupons first to see if I wanted a second set.  This is our standard routine, but Aaron’s routine had messed up and so he was messed up as well.

He got angry as he stood there waiting on me to look through the coupons.  He wouldn’t go shower, he wouldn’t get his coupon trash cans, he wouldn’t get his scissors, he wouldn’t get his sitting pillow out.  Nope.  He stood there waiting on me and fuming.  He ended up being very mad at me and calling me a name.  All because of a change in the time and a change in his set routine.

It seems like such a small thing to us, but to a person with autism these changes are very difficult.  It doesn’t really excuse Aaron’s behavior but it does explain it.  Words don’t speak to Aaron at a time like this.  They only make him angrier.  So from Mom he got a cold shoulder, and by the afternoon he was wanting to put his arm around my shoulders and talk my ear off.  He was sorry, though he never said the words. 

He happily came in the kitchen that evening with the clothes pins that we use on chip bags pinned on his ears.  Things were back to normal, if you would call that normal.  We do.  But one thing wasn’t right.  Aaron’s weather station clock beside his desk had not changed to the new time.  He asked me if I would set it for him, but I told him that I didn’t know how to set that clock.  I had not learned yet how to do that, I told him.
 

Soon he was coming back down to the kitchen with a further report on the clock.   Up he went to his room, only to return a few minutes later.  “Mom, do you want to learn now?” he hopefully asked me.  I gingerly told him that it could wait, and he accepted that…….only to come down soon after that.

“Mom, it’s 6:58,” he informed me, knowing that it was really 7:58.   Soon the next update came.

“Mom, it’s 7:02,” he said. 

Oh, Aaron.  He listened, though, as we told him to not get in a tizzy.  And later he was able to go to bed with great relief after Gary corrected the time on the clock.   Aaron’s world was finally in order, all the clocks and his wrist watch were in agreement, and this crazy changing time business was over!

Until this fall, when we will go through it all again.

I bet if some of these lawmakers had to live with Aaron, they’d stop all this silliness right away.  Now there’s an idea!

 

My Smiling Red Face

I’ve had a gamut of emotions with Aaron over the past few days.  On Sunday, he just wanted to sleep all day.  He started running a fever, so I worried about his recent root canal, although when awake he told us that his tooth and jaw had no pain at all.  He complained, though, of a stomach ache and had no appetite.  Then he had a couple seizures while sleeping that afternoon, plus another shortly after midnight that night.  All of these things push my worry button.

Yesterday, Monday, he got up briefly but then went right back to sleep on the couch until I was finally able to lure him up around 12:30 with the promise of food…….which he ended up not eating anyway.  But a trip to Dillon’s interested him, so after he showered we headed off to the store.  He enjoyed getting out and especially enjoyed getting a snack along with some sparkly water that he likes.  He then asked if he could get his hair cut at the Great Clips nearby, and I agreed.

Any of you who have read about Aaron for awhile know that going to Great Clips is usually an adventure, and this time was no exception.  Aaron knows that if the wait is too long then we probably won’t stay, so he often will bound in the front door and loudly ask, “Can I get a haircut?”  The startled looks on the faces of the hairdressers is actually funny, but I don’t need to see it every time we go there………so I always tell Aaron to wait on me.  Somehow yesterday he slipped in right behind the people entering before us and he quickly found his way to the front counter.  It didn’t bother him one bit that there was a line and that he had forged ahead, and that he was being stared at.  Nope, it didn’t bother Aaron nearly as much as it bothered me.  He also totally ignored me standing at the back of the line saying, “Aaron.  Aaron.  Aaron.”  He interrupted the mom who was paying for her kid’s haircuts, too.

“Can I get a haircut today?” he asked.   The nice girl behind the counter was trying to decide how to handle this intrusion.  I was almost enjoying the show, but decided it was time to intervene.  Since Aaron was playing deaf and seemingly couldn’t hear me calling his name, I had to walk up beside him and usher him to the back of the line where he belonged anyway.  Big Aaron had managed, in less than 60 seconds, to become the center of attention.  The girls working there who know Aaron were smiling, and the customers were staring………at least as far as I could tell.  I don’t always make direct eye contact because if I sense rudeness I just stare right back, and I wasn’t in a staring mood yesterday.  I know that some of them were glaring, though.  I can sense these things, trust me.

When it was our turn to check in, we found out that the wait would possibly be 20 or more minutes.  “Can we stay, MOM?!” Aaron urgently and loudly asked.  So we stayed, of course.  I sat Aaron in an end chair with me right beside him, hopefully out of the limelight.  But Aaron is never totally out of the limelight……because he is observing everything………EVERYTHING………and he rarely, rarely whispers. 

Aaron watched the mother and son who were in front of us go to the counter and talk to the hairdresser about how to cut the boy’s hair.   Aaron watched them carefully and didn’t miss the fact that this boy had on retro type glasses with darker frames.  As they decided how to cut his hair and turned to sit back down, Aaron said……..and remember, this is not in a whisper…….

“Clark Kent!”

I silently told myself to stay calm while I patted Aaron’s leg and reminded him to whisper…….or better yet, to just not talk at all.  Aaron was totally unaffected as he leaned forward for a better look at Clark Kent.

Soon Aaron’s attention was drawn to the hairdresser that was seating another patron.  “Hi,” she cheerily said.  “My name is ——–.”  Aaron pondered this for a few seconds and then asked……again, rather loudly…….”Why do the ladies who cut hair tell their names?”  And I………quietly, hoping that Aaron would follow my lead………whispered to him about being polite and how sharing your name is courteous.  Aaron asks this same question about our servers in restaurants.  He doesn’t understand why these people must share their names.  Of course, Aaron cares little about anyone’s name or about sharing his own name.  I remember asking him one day how he got someone’s attention at his day group when he had never bothered to learn her name.  His answer – “I just say HEY!” 

At least it wasn’t “Hey, weirdo!”  Or “Hey, stupid!”  I know that at times he does choose to call someone a name, but it’s not always their given name, believe me. 

Soon the door of the salon opened and in walked a very nice looking young man.  He walked to the front counter and checked in.  He really stood out because he was wearing a long wool coat, very dressy in appearance, and it was a rich burnt gold color.  I’m sure that all of the other jeans clad, bundled up folks were aware of this man who didn’t seem to fit in there at Great Clips.  Aaron certainly was.  Aaron was studying this finely dressed man, especially his coat, and as the man turned to find a seat, Aaron said……….again, not exactly in a true whisper………

“Weird coat!”

Oh my.  I wanted to move my patting hand up from Aaron’s knee to join my other hand as I put them around Aaron’s neck.

“Aaron!” I said……not exactly in a true whisper, but close.  “Do NOT say that!” 

“Well, it IS a weird coat,” he calmly replied………still not in a true whisper.

The man sat down near me, with just one seat separating us.  I have no idea if he heard Aaron and I certainly did not look at him.  I was very, very relieved when it was then Aaron’s turn to get his hair cut.  The hairdresser happily called his name and as he walked to the chair she said, “Hi, Aaron!  My name is ———.”   And Aaron gave his usual grunt, kept his eyes down, and plopped in the chair.  So much for being courteous. 

Later, as we stood in front of everyone at the counter, I could tell that Aaron beside me was putting his coat on………but something didn’t seem to be working right.  He stopped to sign the receipt, his coat dangling part-way on the floor, and then I finished the process as he once again tackled his coat.  I turned then when I was finished to find that Aaron had put his left arm in the right coat sleeve, so as he attempted to put his right arm in a sleeve there was nothing there.  His left arm was in the right sleeve and the left sleeve was on the floor……..well, it was a mess.  I laughed as I helped him, and Aaron loudly said, “Oh, I thought I had my arm in the right sleeve, Mom.  That was stupid!” 

And the man in the beautiful golden coat was sitting there observing all this coat business.  I wondered if he wanted to say, “Weird coat!” to Aaron.   I saw his eyes dart to Aaron’s face as we headed for the door.  He was wondering about Aaron.  Little did he know………..or maybe he did………..that Aaron was also wondering about him.

So I went from worry about Aaron to relief when he felt better to some embarrassment at his blunt un-whispered comments to laughter as we walked to the van.  Then it was back to worry as the evening saw Aaron feeling poorly again and throwing up all of his soup he ate at supper.  Our day had ended as it began, with some worry about Aaron’s health. 

Today, though, he went to Paradigm……..and today saw me with some tears.  That’s for another story.  Another day.

There’s always another day and another story with Aaron. 

And often another red face for Mom.  It’s OK.  I’ve learned to smile, red face or not.

 

 

Connecting the Dots

A year ago, Gary and I were in midst of making a very difficult decision……a decision that meant we would leave a place and a people that we loved because reconciliation had been denied to us.  It was a painful time for us, as well as for some dear friends that were left behind.  One day one of those friends called and asked if she and her husband could come over that evening to talk to us.  Gary and I were happy to have them come, but we didn’t think we should talk too much about the situation.  We really didn’t know what the visit would entail………or what a huge blessing awaited us.

Mike and Beth sat on the love seat in our living room that night, while Gary and I sat on the couch.  We exchanged small talk, and then one thing led to another as Mike and Beth started telling us about their youth.  They told us how they came to know the Lord; about how they met; about their dating days and their engagement, and then their marriage.  Through laughter and shaking of heads, they shared with us some stories of their early rocky experiences but also of how gracious God was to them in so many ways.  Their differing backgrounds and their stubbornness and their immaturity all melded together over the months and years as God worked on them, and exhibited to them His continuing grace.  They grew in their love for the Lord and their love for each other.  God blessed them with three wonderful children who love and serve the Lord today. 

Gary and I sat there, listening and laughing as they told their story.  Yet I must admit that I wondered why they were telling us all of this.  We thought that Mike and Beth had come to encourage us in this painful time, and while our visit was very enjoyable it just wasn’t exactly what I expected.  Until Mike reached a point in their story where he sat up on the edge of that love seat and excitedly said, “You see, God had a plan for Beth and me.  All along, He was connecting the dots in our lives and bringing us to where we needed to be…….and He still is doing that today.”  Mike continued, “I don’t know what all has happened with you guys, and I don’t need to know.  But I do know that God is connecting the dots in your lives, too.”

So simple.  So amazing.  God pried open my heart with those words and the tears rolled down my cheeks.  I didn’t have to say a word or share a word about our situation.  The Holy Spirit was there, directing the conversation and using it to soothe our hurting hearts. 

I’ve given that night and Mike’s words a lot of thought over the months since.  God connecting the dots………orchestrating the events in our lives in such a way that the end result is a beautiful picture, full of His handiwork and love. 

It reminds me of the pictures I used to work on in my coloring books, those dot-to-dot pictures.  I used to love doing those.  Sometimes it was fairly easy to see what the finished picture was going to be, but as I got older I enjoyed the harder pictures.  Those were the ones that were more difficult to figure out before they were fully finished.  There was just a mass of numbered dots but no order.  Yet as I carefully followed the numbers……1, 2, 3, 4, 5, and so on, the picture eventually took shape. 
 

 
In Psalm 37:3, David said that a man’s steps are established…….are directed……by the Lord.  Each step of ours God directs, even bringing us back into order when we mess up.  It’s easy to look back now and see how step 1 led to step 2 and so forth.  But I’m still stepping and still following, often unsure of where the next dot is or the next number, but knowing that God has promised to direct each step that I take.  Just as I can look back at some of the connected dots and see the picture taking shape, I can also look ahead with full trust that God is connecting the dots, guiding my way.

 
And there’s another beautiful truth connected to all this business of connecting the dots.  It’s something that Peter wrote about in I Peter 2:21.  He said that Jesus left us an example to follow.  That word for example means an outline of a sketch that is waiting to be filled in with details.  Jesus designs the sketch of our lives and then carefully fills in the details that are designed for each of us.  My unique details will not be your unique details.  Or my husband’s or my children’s, even. 

 
God is leading me, step by step.  And as each step is taken, each dot is connecting and forming a sketch……a design made just for me……..in which God then carefully colors in the most beautiful details that I can ever imagine. 

 
Some of the dots may be full of pain…..others with laughter…..some with doubts and questions…….many with hurt…….and a few with carefree ease.  Parts of my sketch may already be completed, other parts are partially done, and still some haven’t even been started.  But one day, I’ll be able to look and see a wonderful picture, whether simple or complex, completed with God’s direction and with His brush strokes of sovereign love.

 
There sure is a lot I don’t understand about so many things.  I still have questions that roll around in my mind during the dark hours of the night…….pain in my heart at some of the hurt we’ve experienced……..wondering why and how things happened the way they did.  But I love thinking about those dots that are connecting into what will someday be a complete and fully understood picture, thanks to God’s grace.

 
When I last talked to Mike and Beth about that night, and asked if I could write about it, both of them laughed and said they couldn’t even remember what all they said.  Oh, but Gary and I remember, because God wanted us to hear those words and to have that lesson penetrate our hearts. 

Connecting the dots. 

And seeing a sketch filled in with God’s perfect details. 

 

 

 

 

My Own Words

This will be short and sweet, which should make all of you dear faithful readers very:

1.       Surprised

2.     Happy

I know that’s silly, but I wanted to take up a little more space somehow.  And I’m feeling somewhat giddy with relief because Aaron just had a root canal, and he did fabulous.  I’m thankful that he’s such a great patient, usually.  I won’t go into the time he bit the dental hygienist. 

Anyway, you know how I often talk about the things that Aaron teaches me, either through:

1.       His actions

2.     His sayings

HaHa!  There I go again. 

So last night, during Wheel of Fortune, I was pretty well zoning out on what Aaron was saying because it involved his latest movie that he’s watching……..Fantastic Four.  How many different ways can I tell him who Doom is, or what Doom does, or what the word ‘doom’ means, or how Doom dies?  How long can I act interested in this topic of Doom? 

Somehow Aaron transitioned into telling me that he repeated something that he heard a client say at his day group.  I really don’t even remember exactly what it all was, but I did tell Aaron that he didn’t need to say it just because someone else said it, even if they told him to say it.  If it’s inappropriate or impolite or rude, then don’t speak the words…..at all, even if someone else says it.  Do the right thing, etc., etc.  I thought my lecture was profound……until I heard Aaron’s concise statement, spoken as he walked past me to go into the kitchen for another snack. 

“So you’re saying that I should live on my own words?” he casually asked.

Well……yeah.  I was left speechless as I heard him scrounging in the frig for some cheese. 

Live on my own words.  Wow!

Being responsible…..wise……careful with my speech.  Not repeating what others say, and thinking twice about what I say before I say it.  Not living or speaking because of the influence of others or the influence of our culture.  I could go on and on, but I won’t.

Living on my own words.  Think about that.
Thanks, Aaron!

 

 

 

Mountains and Valleys

Many years ago, in the land of Israel, there were two battles that God used to speak greatly to me right here in 2014.  It’s just another example of how powerful and living the Word of God is, and how God uses his timeless word to speak to us where we are today.  This story involves the wicked King Ahab and the wicked Arameans and the weak Israelites……except that the Israelites had God on their side, which is all they or any of us need.

The Arameans decided to come up against Israel.  They had a great multitude, especially compared to Israel’s small numbers.  However, God isn’t worried about numbers, and so with His strength and wisdom He enabled Israel to attack the Arameans and win the battle. 

The Arameans didn’t take this defeat sitting down.  Soon they decided, through the counsel of their king’s advisers, to attack Israel.   The first battle was in the hill country, but the Arameans decided that the second battle would be in the valley.  They reasoned that the gods of Israel were the gods of the mountains but not gods of the valleys, so they decided to give themselves the strategic advantage of fighting in the valley for this second go around. 

 
God had other plans, as we well know.  The Arameans obviously didn’t know that there is one God, and that He is God of both mountains and valleys.  In I Kings 20:28 we find God speaking through His servant as He said, “Because the Arameans have said, ‘The Lord is a god of the mountains, but He is not a god of the valleys’, therefore I will give all this great multitude into your hand, and you shall know that I am the Lord.”

Sure enough, God once again gave Israel a sound victory over the Arameans….valley or not.  It totally didn’t matter whether the battle was in the mountains or in the valleys, because God is God of both.  It doesn’t matter what we or others think about God.  He IS the God of the mountains and He IS the god of the valleys.  Period. 

This is an old analogy but well worth repeating.  I have mountains in my life and I have valleys.  I have the good times and I have the bad times.  We all do.  It’s easy to see God on those mountain experiences when things are going well, and to talk of all His blessings.  We see our prayers answered the way we want them answered, and so we praise God for “answering our prayers.”  We feel like God is near and evident because……well, because we feel Him.  We see all the good things and we feel Him near, and we’re just so high up on that mountain.
 

But what about the valley?  We will end up there, you know.  Things in life do have a way of changing, for some more than others.  The valley is a harder place to see God and to feel His presence.  Prayers aren’t always answered in the way that we want…….in the way that we pray.  Healing may not come.  Ongoing heartache may not go away.  Doors may not open.  Relationships may not be restored. 

Sometimes the valley is one quick battle and we’re done.  We can be back up on that mountain in no time.  But often we find that our valley experience is prolonged and painful, so hard to understand and so hard to maintain.  What we need to remember…….what I need to remember……is the lesson that God taught to the Arameans so long ago. 

God IS God, no matter where we find ourselves.  He knows the battle plan and the best location for that plan to take place in our lives.  Through the good and the bad, God’s desire is for us and for all around us to see………through our battle………that He is the Lord. 

Now it’s easy for me, as I sit in my comfortable chair at my special quiet time desk with my pretty candle flickering, to have all these thoughts about mountains and valleys.  It’s quite another matter to live this out when I get up from that desk, leave my comfy chair, and blow out the candle.  Life hits me square in the face many times, and I find myself with thoughts and worries and frustrations that are not honoring to God at all.  I’m thankful that God understands my weaknesses, but I’m even more thankful that He tells me over and over that He IS God.  He wants me to know by experience, both on the mountain and in the valley, that He is fighting for me.

 
It’s not the length or the location of the battle, but it’s the strength of my God that I need to remember.  And His presence, in both the mountains and the valleys of my life. 

“I will give all this great multitude into your hand, and you shall know that I am the Lord.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I Was Thinking

I could tell right away this afternoon, as soon as Aaron came in the door and found me downstairs, that something wasn’t quite right.  As I looked at him I knew that he had been crying, and that was confirmed as soon as he began to tell me about his day.  He was trying to smile but his mouth had that familiar taut look that told me he could easily cry at any moment.  I tried to just listen, but his version of events is usually very hard to follow.  Therefore, I had to ask questions, which frustrated him……especially when he was already frustrated.  That led to me giving him a lecture about what he told me had happened.  I wasn’t helping at all.    

After listening to Aaron, and especially after talking to Misty, one of his staff – I was able to piece together what had transpired.  Apparently, at the theater, Aaron had given Rosie a playful whack on her rear as she passed him in the aisle on her way to sit beside him.  Rosie didn’t  think a thing about this behavior of Aaron’s.  One of the staff told Aaron that he was being rude, and for some reason Aaron became very sad about what he had done.  He finally got up during the movie and sat outside in the hallway on a couch. 

Let me explain some things about Aaron.  He does not have the filters that you and I have.  He has an almost uncontrollable urge to whack us on the back or on the rear or maybe on top of our heads.  He doesn’t do it all the time, but often enough that he gets fussed at regularly.  Aaron also has a very hard time controlling his mouth.  Often he is funny, as you know from what I write about him, but he can also be very insulting and frustrating.  He might call someone weirdo or stupid or dumb or many other names. 

It’s complicated, but Aaron’s brain literally doesn’t connect things the way that others do.  We have worked and worked with him from the time that he was a very little boy over these issues……and many more.  He is high functioning enough that you would think he could control these impulses, but he often cannot.  We still correct him……we still reward him, especially with praise, when he shows restraint……..we still caution him about correct behaviors and speech before he goes to his day group………but we still see these same behaviors over and over.  We can’t even tease Aaron very often because if you give him an inch he will take a mile.  In other words, if he sees a small opportunity that teasing may afford to tease us back, then he will strike with both barrels.  How often have we all heard Aaron say, “Oh yeah?”…….and then launch into some verbal or physical barrage, all “in fun.”  Therefore, we have to discourage physical play with Aaron as well as verbal bantering.   

Aaron’s mouth and his hitting are a very large part of his disability when it comes to getting along in groups of people.  When his staff understands this, and loves and understands Aaron, then things run smoothly.  We are very thankful for the understanding and loving staff that he has at Paradigm. 

Now back to today.  For some reason, Aaron was very emotional today.  Recently we’ve noticed that he wants to be pleasing, and that he talks a lot about having friends.  He wonders why certain of his peers at Paradigm like him, which is both sweet and sad to hear.  He and Rosie are very special friends, and they understand one another.  They can poke each other or step on each other’s foot on purpose, and know that it’s all in fun.  So when Aaron gave her a little hit on her rear, it was no big deal to him or to Rosie.  It was also appropriate for one of the staff to tell Aaron that he was being rude.  Gary or I certainly would have done the same thing.

But for some reason, today, it got to Aaron.  He didn’t want to be rude, especially to Rosie, and he didn’t want to have to come home and tell me that he had been rude and that he had hit Rosie when I told him once again this morning not to hit anybody.  So he left the movie that he really wanted to see, and he sat out on the couch.  He said to me, “I sat on the couch and was thinking.  What do you think of me thinking?” 

I had to smile at that.  And I told him I thought it was a very good thing to be thinking.  He continued, “What does that mean to you, that I was thinking?  That was new to me.”  As he talked and talked, I felt like I understood what he was trying to convey.  He was upset that he had whacked Rosie and he was upset that he was rude and he was upset that he had to come home and tell me about it.  But it went even deeper than that.  I learned from talking to Misty on the phone that Aaron had told her the most amazing thing.

As they drove away from the theater, with Aaron crying, he said to Misty, “Do you know why my brain doesn’t work like everybody else’s brain?  I tell my brain to not do something but it does it anyway.”

My Aaron expressed himself in a way seldom heard from him.  It was both eye-opening and heart breaking.  How I wish I could reach inside his head and rearrange all of his neurons for him as easily as I can gently put a band-aid on his wounds!  How I wish I could give him a magic pill that could control his impulses!  How I wish that I could make his life easier.

What can I do?  I can, along with Gary, love our Aaron.  I can listen a little longer before I jump in with a lecture, assuming I know the whole story as I did today before he has time to slowly sort it out in his head and tell me.  I can, like Aaron, learn to sit on the couch and do some thinking……….some thinking about what Aaron is thinking.  And that can be some deep thinking right there, trust me.  For what Aaron is thinking is complex and puzzling and confused…..and sometimes just sad.  His tears today showed me that. 

Well, he’s in the family room right now crunching on some cucumbers that Gary sliced for him.  I hope he’s done with the crunching before I go down.  He wants me to do something with him, and I hope that I have the time.  Maybe I’ll give his back a good tickle with the back scratcher, and listen to him talk. 

No telling what I’ll learn if I just listen. 

 

Weighty Matters

This morning Aaron walked into the kitchen while I was getting Gary’s lunch ready for him to take to work.  I told Aaron good morning as usual, and as usual he didn’t respond in kind.  The first words out of Aaron’s mouth were, “Mom!  Do I look like I’ve lost weight?”  Why waste time with a “Good Morning” when there are other more pressing matters to discuss…….like weight.

Aaron has had a weight issue for much of his adult life.  Some of it is genetics from my Hollandsworth side of the family.  He has that stocky build, most definitely.  And much of the weight issue is also from medicines that Aaron takes.  Last year we weaned Aaron off of two medicines, and as a result he lost 65 pounds.  We had lots of blood work done to check for any physical issues, but he was totally healthy.  So we bought him new pants that were two sizes smaller, and he still had to wear a belt.  However, he is now on a new medicine and has gained back some weight.  He still looks good, and we don’t want him to worry too much about his weight, but it wasn’t lost on him last week at his seizure appointment that he has gained some weight back. 

Aaron waited for my answer to his question this morning.  I told him, as I always do, that I can’t tell if he’s lost weight overnight.  But that wasn’t enough for Aaron.  “Well, do I look 189?”  I assured him that he looks good and to not worry about that number, but to just be careful with what he eats.  “Well, did I look 189 at the doctor?”

Oh, Aaron.  He thinks that we can tell from one single day to the next whether he has lost or gained weight, or whether he looks like he weighs what he does from day to day.  If only it were that easy! 

Aaron loves his food.  He not only loves eating it, but he loves to analyze it and talk about it and try to figure it all out, especially if the food is unusual to him. 

He called me once when Gary and I were on a trip.  He very excitedly told me about how he had gone to a Chinese restaurant, and that he had chicken nuggets (as he called them) and a salad.  “But Mom, there was no ranch dressing!  There was only a dark brown dressing with those seeds.  Or would you call them beads?”  Later he added:  “Mom, that dressing is a soft black color.  Ranch is tougher.”  Another observation:  “Mom, Chinese love fish food!!”

Speaking of salad, he decided some time back that he no longer wants croutons.  I learned that fact at Olive Garden one day when he looked at the salad and said, “Mom, I don’t want the hard parts.  Do you want me to give you the hard parts?”  As he started handing me the croutons I realized what he meant by the “hard parts.”

He won’t eat cotton candy, thankfully, but one day he described the funny cotton candy he had seen at the store.  “It’s like the fluffy stuff inside a pillow!” he told me.

“What are those round circle things at Long John Silvers?” he asked one day.  We finally figured out that he meant hush puppies.

Aaron opened our freezer one day, and exclaimed, “You have the ice cream with stripes!  You wanted striped ice cream?”  That would be Neapolitan, in case you’re wondering. 

And one of my favorites, recently, was the other night when he said, “Mom, I ate one of those vanilla chocolate things on a pole!”  
 
Aaron’s chocolate vanilla thing on a pole!

Coming home from his group one day, he happily told me that they had doughnuts to eat.  I asked what kind they had, and he answered, “You know, those normal kind……the green ones.”  That’s his color blindness kicking in, just so you know.  And right after he told me about eating green doughnuts, he asked, “Does it look like I’ve lost weight?” 

Not with eating green doughnuts………or any other color, Aaron.

He gave me a running list of what he had eaten one day when he returned from Paradigm, his day group.  He said they had doughnuts, and tornado chips [that’s Bugles, by the way], etc., etc.   “I’m over full!!” he exclaimed. 

Moderation is always an issue with Aaron.  We try and try to make him understand that it’s OK to occasionally eat a little of something, but not a huge amount.  He usually wants the super large of everything, or multiple bags or boxes.  Many of you will remember me writing about the #52 Slushie from Quik Trip that Aaron was always talking about, and how I finally realized it was a 52 ounce Slushie that Aaron always bought.  The biggest of the big, of course!

Even if it’s a healthier food, we sometimes have to limit his intake.  One day he was eating cheese slices while watching television.  I walked in to find a little pile of wrapping papers by his chair as he proceeded to say, “At first I did not know that they did not have a flavor.”

So why did you eat FIVE of them if they did not have a flavor?!

“What do you want me to eat while I watch TV?” he answered. 

I almost asked why he didn’t just finish off the wrapping papers as well, but I thought I better not give him any ideas.

We try to encourage good food, although I know that I allow more junk food than he needs.  One day I was telling him once again that he needed to eat good food, like eating supper with us instead of snacking during the day and again at night.  “So what are you having for good food tonight?” he asked.  

He loves celery with peanut butter, but doesn’t like the mess in his teeth.  “I thought I had a rope in my teeth,” he said as he picked and picked at the celery fibers in his teeth.  He loves cucumbers, but was amazed one day to see a commercial that showed a spa with a woman on a table………and cucumbers over her eyes.  “Mom!  That woman had cucumbers in her eyes!!  Do you want to do that?  Do you want cucumbers in your eyes?”

He saw a commercial about high cholesterol and wanted to know all about what it is.  He was eating peanuts and so pointed to the peanuts in his bowl after I explained high cholesterol.  “Is this it?”

Sometimes after a seizure, he loses his sense of taste for awhile.  One day he said, “Mom, I think my mouth is sick.”  So even though Aaron tends to eat too much food, we don’t like it when his mouth is sick. 

At other times his mouth is just fine, but he sure is confusing.  Take the time he was telling me that he had eaten Doritos at Paradigm.  “Mom, you know those Nacho Cheese Doritos?  Well, I don’t like them all the way.  It’s not that I don’t like them.  I just don’t like them ALL the way!  Do you understand?”

Sure I understand, Aaron, about as well as I understand you most of the time.  Still scratching my head on that one the same as I scratch my head concerning Aaron so often.

So we come full circle, back to gaining and losing weight.  One night Aaron said, “Mom, tonight I ate fruit and cheese.  So does it look like I’ve gained weight?”

“Aaron,” I answered yet once again.  “I can’t tell in one night if you look like you’ve gained weight.”

And he replied, “Then does it look like I’ve LOST weight?”

He still doesn’t understand why I shake my head, walk away, and head for the chocolate. 

Aaron better not say one word about MY weight!

 

 

Will You Be My Partner?

This morning Aaron had an eye exam, and then he and I went to lunch at Chili’s.  I would like for you to join us for lunch as I try my best to re-create some of our conversation.  Maybe it’s the warm weather and the beautiful sunshine, or the fact that he had a great and fast eye exam, or just the fun of eating out at one of his favorite places……..but Aaron was a pure delight during lunch.  Sometimes his autism is in full force but in such a funny way that I just wish everyone could experience it like I do. 

So here goes:

We were nearly at Chili’s when Aaron started talking about one of his staff that drives him home.  Aaron has had to learn to understand her.  She is very caring but is also very firm………stern, as Aaron says.   Aaron mentioned that fact again and I re-affirmed to him that _____ is very nice.  “Sometimes I don’t see it that way,” Aaron said. 

As we entered Chili’s and were ushered to our booth, I had to urge Aaron to tone it down.  He was pretty loud and I didn’t think anyone else needed to hear his exposition of his stern staff……or any of the other subjects Aaron wanted to loudly discuss as we sat down.  I had to draw his attention away from ______ and get him to look at the menu, where he fairly quickly chose enchiladas…..because there was a picture.  He greatly prefers to order food if he can see a picture of it first. 

His salad came quickly and he promptly removed the croutons for me to eat.  He likes for me to pour the dressing on, which I did.  He wanted every bite of that dressing, though.  “Mom, can we dig it out?” he asked.  So I scraped and dug as much of the dressing out of the little holder as I could, and he was content.

I was looking at one of the servers and Aaron didn’t miss that fact.  “Mom, are you looking at a person?  You tell me not to stare.”  OK, Aaron……OK.

Our bubbly server brought us our entrees and we were happily eating as Aaron talked on and on about black beans and what they are and has he had them before and do I have some at home and what have I cooked that contains black beans.  The happy server bounced by and looked down at our food as she said, “Isn’t it scrumptious?” 

“She’s strange,” Aaron said as she walked away.   I asked him why he said that.  “I don’t know what she said there,” he told me.  So then we discussed what the word scrumptious means, even as I knew that the main reason Aaron thought she was strange was that she was cheery and talkative and very friendly…….all things that Aaron doesn’t relate to at all in other people.  Like when the eye doctor walked in the room earlier and gave Aaron a big hello and a hand shake…..only to be met by no eye contact and a grunt from Aaron. 

Soon Aaron was telling me about how his special friend, Rosie, often laughs at things that he says.  “Rosie thinks I’m funny,” he said.  “You are,” I replied. 

“Even when I say that the food they’re cooking at Paradigm smells like poop?”

Uh, no Aaron……..not then.

Our server whizzed by again and made another peppy comment, and Aaron………under his breath, thankfully……..said, “OK, weirdo.”   He then got fussed at by me, to which he replied, “But she’s strange.”  And if Aaron thinks that a person is strange, then to him it is perfectly fine to mention that this person is a weirdo. 

“But I wouldn’t tell her,” he clarified, as if that made it all right.  “Don’t you tell her,” he said to me.  I assured him that wasn’t going to happen and then I asked him why he thought she was a weirdo. 

“The way she talks about food,” he explained.  “Scrumptious.  You don’t use that word.”

Well I know I won’t now, Aaron, because you’ll call me a weirdo!!

“Mom,” he went on, “you should try in the Olympics!” 

“I should be in the Olympics?” I asked.  

“Yes,” he answered.  “That dance skating.”  So I asked Aaron why on earth he thought I should be in the dance skating Olympics and he reminded me that I dance at the house.  To which I reminded him that my dancing irritated him.  And besides, I carefully told him, I’m a little hefty to be wearing those skating outfits.  He said he still thought I should do dance skating, so I asked him if I would embarrass him as I tried to fit myself into that little outfit and did my irritating dance. 

“No!” he affirmed.  “I wouldn’t be watching TV!  Dad would.”

He didn’t understand the depth of my laughter.

“So would you be my partner?” I asked him.  “Would you lift me in the air?”

“No!” he said.  “You said you were fat!  But I won’t say it in public.”

Thanks, Aaron.   I feel better.

More laughter from me made Aaron slightly grumpy, as I noticed when he started to kick me under the table.  That was my cue that he now thought I was laughing AT him in a mean manner, which he really detests. 

“Aaron,” I said, “I was laughing because you are so wonderfully funny.  I was actually paying you a compliment.”

He looked at me cluelessly, so I asked him if he knew what I meant when I said that I was paying him a compliment.

“You’re giving me money?” he hopefully asked.

I knew it!  Literal Aaron.

Soon he had finished every bite of his enchiladas and every black bean and every kernel of rice, as well as all of his water, so we got out of our booth.  Aaron walked ahead of me, looking at every table on the way out so that he could see what all the people were eating.   Many of them looked at him, too, but he didn’t care.  And I didn’t, either.

Before leaving the house this morning, Aaron knew that I had called the endodontist and made an appointment for him to be checked for a possible root canal.  He asked if the doctor would know what tooth it was and I told him yes, that it was on the referral as tooth #13. 

On our way home from Chili’s, we stopped at the vet for some dog food.  Aaron bounded in the door and soon spied the resident cat.  Kato enjoyed the petting and Aaron enjoyed having Kato bite him playfully.  Then Aaron turned to the girl who was ringing up our purchase and loudly proclaimed, “My number 13 tooth has dead nerves so they have to give it a root canal!!”

She laughed, and I think she gets Aaron because of her relaxed reaction.  Out of the blue, with no reference point at all, Aaron for some reason had to give an update on his number 13 tooth.  Perhaps it’s because he knows that the vet is a doctor and that a doctor will work on his tooth.  Who knows?

That’s just it.  With Aaron we sometimes don’t know and never will know.  But I do know that he is funny and clever and just delightful on a day like today. 

And I’ll take it!  I think he’s an awesome partner!

 

Smooth…..It…..Over

I’m sitting at our neighbor’s house, surrounded by the unfamiliar noises of a house that I do not know.  Around me are many treasures that have been accumulated in the sixty-eight years of marriage that this couple have known.  These items mean nothing to me beyond the fact that some are beautiful, some are unique, and some are mysterious.  But each one is very important to Don and Nora, just as Don and Nora are of supreme importance to each other. 

Don is 87 years old.  He and Nora have been extremely close for all their marriage, I would dare say.  They are never apart, and if you saw them in the aisle of our nearby grocery store they would more than likely be holding hands at some point.  Nora speaks loudly so that Don, who has refused to get hearing aids, can hear her. 
 
Don and Nora

Don has weakened considerably over the past two months.  He was finally hospitalized last week, and to everyone’s great shock he was diagnosed with cancer of the lung, liver, and colon.  He came home this week, on Monday night.  Home to die, as he and Nora wished, instead of remaining in a hospital.  How very sad.

Nora could only bring Don home if she had a plan of care in place.  We, and the neighbors on the other side, said that we would do what we could to help.  There have been a series of events over the past few days and nights.  Don has gotten out of bed during the nights and we have gone over to get him back in bed, and to calm Nora.  She continues to insist that she can handle all of this and she refuses to hire an aid, or to put Don on the Hospice floor of the hospital.  We shake our heads, but we do understand her desires and we sympathize with her pain.  Hospice is also being wonderful, but for all of us there is only so much that Nora will allow us to do.

The second night that Don was home was particularly hard.  Gary and I went over to help, as did the other neighbor.   Nora was at a breaking point.  At times that are this stressful, it’s easy for tempers to flare.  Nerves are raw, and the body and spirit are depleted.  I gently attempted to direct Nora’s thinking toward getting some needed assistance.  She snapped.  She did not want to hear anything that even remotely suggested taking Don out of the home, or hinted at her not being able to care for him – on her own.  The situation was tense, and hurtful.  We stayed until we were able to do what we could, and we left hearing the slamming of the door……….an evidence of the slamming door of Nora’s heart.  It was the sound of her deep grief and her strong spirit.

We walked back home under the beautiful moon and stars, Gary and I.  The air and the snow were cold, just as I felt my heart was becoming.  Anger and hurt will do that to a person, no matter the circumstances.  Gary was so kind, both to Nora and to me.  At Nora’s house he gently touched my back in order to remind me to be quiet.  He ministered to Nora and to Don that night, but to me as well.  He brought my focus back to the point of understanding our position in all of this, and of trying to honor Nora’s wishes, no matter how unreasonable they may seem to us.    

There was someone else who reached into my angry heart that night as well.  My dad.  I was with my parents during the month before my dad died.  I saw the love they had for each other, much like Don and Nora.  I saw the fear and the grief and the decisions that were all a part of this process of death.  And I saw some tense moments between my parents that arise out of the exhaustion and pain of such a looming loss.  There weren’t many of those times and they weren’t extreme, but they did occur.

Mom and Dad
After one such time, I helped get Dad on the couch from his wheelchair.  He and I sat there for a minute, just the two of us.  I put my head on his shoulder as he sat there with his head bowed down from weakness.  We held hands and I spoke words of comfort to him, or at least I hoped they were.  And I told him that I was sorry that sometimes things were stressful. 

My dad slowly lifted his tired head, and he slowly turned to look at me with those wise, kind eyes.  Then he smiled……..his very familiar and very sweet smile.  And he said, ever so softly and slowly, “Smooth…..it…..over.”

His wisdom, in those three little words, was profound.  I have been reminded of that wisdom many times since my dad went on to heaven.  I am so thankful for that moment with him and for the deep lesson I learned once again from my dad, even as he was nearing death.  Those words came to me as Gary and I walked home in the cold snow, still stinging from other words that were not so kind. 

Smooth….it….over.  Be the one to make things right.  Be the one to show kindness.  Be the one to reach beyond harsh words and simply smooth it over.  Is it easy to do?  No.  Is it right to do?  Yes! 

The next day, when Nora called me for help, my attitude was changed.  I had peace and I had empathy for this faithful woman who so loves her dying husband.  Nora hugged me and as I later left her at the end of the day, she said three words as well.  “I love you,” she said as she hugged me close.  And I was able to freely hug her in return and tell her I loved her as well. 

There is freedom in forgiveness.  There is escape from bitterness when I heed the words of my sweet and wise dad.  Smooth….it….over.

Thanks, Dad.  I miss you but I’m still listening to you.
My sweet Dad
 

 

 

 

Confucius Say……….

Aaron has been home for three days because of the big snow we had.  When Wichita schools are closed then his day group is closed as well.  Plus I wouldn’t have wanted him out on these very dangerous roads.  It’s really been fun to be snowed in together……for the most part.  He has been very happy to watch movies, or watch movie clips on his computer; he’s been happy to play computer games; he’s been happy to watch his taped Law and Order episodes; he’s been happy to eat tons of peanuts; and he’s been happy to just enjoy time with me.

Of course, I’ve had to adjust to having Aaron repeatedly ask me questions. 

Mom, what are you doing?

Mom, what’s for lunch?

Mom, what are you doing now?

Mom, can we play Tri-Ominos?

Mom, are you watching Wheel of Fortune?

Mom, what are you doing now?

Mom, can I take a nap?

Mom, do you think we can play a game tonight?

Mom, now what are you doing?

Mom, what’s for supper?

Mom, did you say you could watch Wheel of Fortune?

Mom, what are you doing?

In fact, Aaron saw this Baby Blues cartoon yesterday and said, “Mom, look!  This is like I do to you!”   Is it ever!
 

On his first snowed-in morning, I looked in the family room and saw Aaron in the perfect lazy day posture.  He had the right idea from the very start.  That morning, I fixed him French Toast and even cut it into little squares the way he likes.  He had coffee and watched his taped program, and struggled not to slip Jackson pieces of yummy French Toast. 
 

Later, for lunch, I fixed us a pizza and we ate while we played Tri-Ominos.  Once again, Jackson wanted in on the action.  And Aaron had his silverware that he never used, and his toothpicks, and his napkins, and his bowl in which he put his pepperoni – which he later ate separately.  Don’t ask me why.  And if all these things sound familiar to you long-time readers……..welcome to my world, where I am surrounded by the familiar and the routine EVERY SINGLE day.  I just want you to feel like you’re a part of my world.

You’re welcome.   J

 
 
Yesterday, Aaron and I ventured out to our nearby Dillon’s.  It was nice to get out of the house.  We picked up both some necessary and some fun food.  And once again we ate lunch while we matched all the numbers in Tri-Ominos.  We played three games of Tri-Ominos over those three days.  Aaron won twice and I only won once.  Of course, this made Aaron very happy.

 
What did NOT make Aaron very happy……..not at all happy……..was how I started preparing him yesterday for his return to Paradigm today.  I knew that I could wait until Monday to send him back, but I also knew that it would be good for him to be made to go back today, on Friday.  School was back in session and the roads were passable, and I just knew that Aaron needed to be gently urged back into his routine. 

He much preferred his stay-at-home routine.  I always wonder if I make it too much fun to be at home.  I want him to enjoy time at home, and I certainly enjoy time with him (for the most part).  And deep down I know that no matter what his time at home holds for him………good or bad……….interesting or boring……….he still won’t want to get back into his “you have to get out of the house and live your life” routine. 

As is so typical of Aaron, yesterday he agreed with the fact that he would return to Paradigm on the next day.  This morning, however, he displayed his frustration by raising his voice and saying he would NOT go to Paradigm, and why can’t he just return on Monday, etc.  But I know Aaron and I know that Monday would be no better than Friday……..at least not by much.  And once I tell him that we are going to do something…….that HE is going to do something………I need to stick to my guns if at all possible. 

We exchanged some firm words.  He tried to use guilt.  “You just want rid of me!” he blurted out.  He tried to use sympathy.  “I’m tired!” he said.  He tried to use his bargaining power.  “But I’ll go on Monday, just not today!”  he continued.

He saw that I was standing firm, though, but what he couldn’t see was that inside I was nervous.  I was nervous about how angry he was going to become, for one thing.  I was hoping that I would remain firm but loving, not lashing out in anger at him if he became angry.  It’s that inward struggle that we parents have but that we can’t reveal. 

Finally, Aaron asked if we could stop at Dillon’s and let him get something to take to Paradigm.  He didn’t say that he wouldn’t go to Paradigm unless I stopped.  That would have resulted in a big no from me.  But he asked politely if we could stop, and so I said yes.  Aaron instantly calmed.  And though he was still a little grouchy when we left the house, he was for the most part compliant and happy.

I talked to Aaron awhile ago.  I don’t think he’s had the best day at Paradigm.  His mouth gets him in so much trouble, but also is what makes him so funny.  How I wish we could just balance him out!

Yesterday he said, “Mom!  I was reading about a man in my Handy History Answer book.  His name was Con-fuse-ush!”   Notice how Aaron pronounced that name.  J 

I need to change Aaron’s name.  We should have named him Con-fuse-ush……….because leaving us confused is just what he does on most days. 

“Mom, what are you doing now?”

Scratching my head, Aaron…….scratching my head.