Category: Asperger’s Syndrome

God’s Gift…..Baffled But Blessed

 I was reading 2 Kings 4 yesterday – the story of the Shunamite woman.  It’s a story you may know, but what I read in my commentary/devotional book by Dale Ralph Davis gave me a new insight that totally blessed me……..so I hope it will do the same for you as well.  You probably know the story.

Elisha often passed through Shunem on his travels through Galilee.  A Shunamite woman of wealth and standing began opening her home to Elisha, extending her hospitality by offering him food and rest.  This woman urged her husband to add a room on to their house, a guest room of sorts where Elisha could spend the night.  During one of those stays, Elisha decided that he wanted to reward the woman for her kindness.  He asked her if he could put in a good word for her to the king or to the captain of the army.

The Shunamite woman said no to Elisha, explaining that she had all that she needed or desired right there in her own community.  But Elisha still wanted to do something to thank this woman, and so Gehazi, Elisha’s servant, reminded him that the Shunamite had no son……….and her husband was very old.  Elisha called the woman back and then proceeded to tell her that by this time next year, she would have a son.  At first she didn’t believe it, but sure enough, to this woman and her old husband a son was indeed born. 

When the son was grown, he went out to the field one day to help his father.  He complained of his head hurting and was carried back to his mother, where he soon died.  He was placed on the guest bed in Elisha’s room, and then the Shunamite rode a donkey to Mt. Carmel, where she found Elisha.  She grabbed his feet and in great distress she reminded him of God’s promise of a son for her.  A promise that now ended because her son was dead.  Elisha returned to her house, and through God’s intervention the son was restored to life.

What so impressed me as I read Davis’ commentary was this:  The Shunamite woman, when asked by Elisha if he could put in a good word for her, said no…..that she had all she needed.  She had no need of a favor or a good word or anything, really.  She had position and money, a husband and a home, and a strong community.  No needs.

Yet at the end of this story, she is very needy as she pleads for Elisha’s help.  What had made her needy?  God’s gift had made her needy.  God had given her a son, a beautiful gift of a son, but through that gift she had now become very needy.  God gave her a gift, but then He took it away.  Does this mean……that God is mean?  Does He enjoy giving good gifts only to enjoy taking them away?  Does He “make glad, only to increase the pain?  Does He lift us up only to drop us all the harder?” (Davis) 

The Shunamite clutched Elisha’s feet and sobbed in bitter distress as she pleaded for his help.  And in her sobs and her distressful pleading, she was exercising faith in God.  The God Whom had so blessed her was now perplexing her and crushing her.  And as Davis said, “What can you do when God’s mercy has turned to malice?  Take the bitter distress and in it keep clutching at the God you don’t understand.  We have a word for that: faith. (Which tells us, by the way, that faith is not serenity.)”

My mind turns to our Aaron when I read these words.  He was such a wonderful gift from God to Gary and me.  We had been married for over five years when he was born.  He was a precious little 6 lb. 4 oz. bundle of blessing to us. Our firstborn!  I knew that no other woman on the earth had ever felt as much joy as I was feeling as I looked at him in my arms.  I was so proud and thankful.  A son!  Boys were rare in our family and there I was, with a son.  A SON!

The days turned into months and the months into years.  Then came the seizures, along with behaviors that only increased with age instead of improving.  School issues, finding doctors, trying all sorts of medicines, friends or lack thereof, sibling problems, the autism diagnosis, endless meetings with professionals, embarrassments, and constant awareness that our life was often rotating around Aaron.  It was overwhelming, and totally not what I thought life would be like for us and our Aaron……our son.

It was often hard to capture that joy and pride I had experienced when he was born.  I loved Aaron……I love him now……but it’s often been through a haze of sadness because of his condition, and frustration because of his behaviors.  As I read what Dale Davis wrote, though, it hit me square in my heart.  God’s gift of Aaron to me has made me needy…..and being needy has made me learn to rely on God in a way I might not have done otherwise. 

 
Like Davis said, I have often found myself clutching at the God that I don’t always understand….and that is called faith.  “Faith is not serenity,” Davis said.  That’s certainly true in my life.  Not only is life with Aaron rarely serene, but the raging questions and disappointments in my heart are anything but serene. 

Is Aaron our thorn in the flesh like Paul had?  Maybe.  I do know that beside certain verses in my Bible I have written Aaron’s name and a date, my signpost of ways that God reached down and spoke to me concerning Aaron issues.  God has certainly used this gift of Aaron to draw me to Himself in a way that perhaps I would not have ever experienced without Aaron in my life. 

I want to remember that phrase……..God’s gift has made me needy.  Needy for God and needy for faith………a faith exercised in sometimes very trying circumstances and a faith exercised without always having answers to my questions. 

Davis said, “……the story is here to reveal your God – the God Who delights to amaze His ‘ordinary’ people with good gifts; Who sometimes baffles us with the mysterious sorrow He brings…..”

God baffles, but He also blesses. 

Much like Aaron does in my life………from baffling to blessing, over and over.     

Do NOT Talk About This Color Thing!

Happy Saint Patrick’s Day!!  I like to tease about this day being MY day…..Saint PATTY’S Day.  However, I did not mention anything like that to Aaron this morning because he would only think that Mom is being weird……..and that would probably lead to him getting impatient with weird Mom.  Mornings are already rather “iffy,” so I just didn’t burden him with my wit.  Sorry that the rest of you are not so fortunate.  J

 
I did make sure that Aaron was wearing a green shirt today.  Not that he cares one little bit, but I do care.  Not that he cares that I care……well, you get it.   I decided not to make a big deal about today being Saint Patrick’s Day.  That’s because Aaron might see it as some sort of holiday or a day to celebrate, and he does not usually like celebrations.  All the noise of parties, and people acting weird (that’s how he sees it!), makes Aaron most unhappy and uncomfortable.  He also feels like something extra is expected of him but he isn’t sure what that something is, so he becomes very irritated and then very vocal.  A very irritated and vocal Aaron can ruin the best of celebrations.

I thought, though, that maybe I should tell him his shirt was green.  You see, Aaron is color blind and I knew that to him his shirt probably looks like some shade of brown.  I didn’t want others at his day group to maybe say something about him wearing green and then have him being clueless, so I told him this morning that his shirt was green since it is Saint Patrick’s Day.  I should have left it there, but then I had to go and say something about knowing it might look brown to him. 

“OK, OK, Mom!” he said as he walked away.  “I don’t want to talk about this color thing again!” 

Well, it’s not like we talk about this color thing every day, but I understood his frustration and I just left it alone.  Ah, Aaron.  He didn’t want to talk about this color thing, but over the weekend he did plenty of talking about other things.   Let’s see:

SPRING:  Aaron sees the seasons like this……winter is cold; spring is warm; summer is hot; and autumn is cool.  Period.  And each season should begin on its designated day with the appropriate temperatures attached.  Therefore, I was not surprised yesterday morning when he said, “Mom, I was sitting in my room and I felt heat.” 

Yes, Aaron, that’s because the furnace came on.

“The heat came on?” he replied.  “I thought it was spring.”

No, spring starts on March 20……this Thursday. 

“So it’s still winter?” he continued.  I told him it was, and he predictably said, “Then why was it warm yesterday?” 

I explained, as I have every season for many, many years, that we can have warm days in the winter and cold days in the spring and hot days in autumn and cool days in summer……

“So this Thursday it’s spring?  Then it’ll be warm?” he asked as he walked away. 

Whatever.

Yolanda:  As he and I changed his sheets this weekend, Aaron was talking about his good friend, Yolanda, and how he let her borrow some DVDs.  As we talked and I once again said the name ‘Yolanda,’ Aaron interrupted me by saying, “Mom, you say it in a bad way.”

I asked what I was saying in a bad way and he explained, “You say it YoLANDa but it’s YoLONDa!” 

Oh.  Well, I wouldn’t want to say it in a bad way so thanks for correcting me, Aaron.

HIS FACE:  Last night after Aaron brushed his teeth, he came in our bedroom to tell me something that was very exciting to him. 

“Mom!  After I brushed my teeth, I looked up close in the mirror…..halfway…..and it looks like there are HOLES in my face!!  See?”

And he leaned in very close to MY face so that I could hopefully see the holes in HIS face. 

“Those are for SWEAT!!” he informed me. 

Interesting. 

And with that, he was off to bed and I was off to have a good laugh behind the closed bathroom door.

He and I went to Dillon’s this morning on his way to meet his group.  He was happy at Dillon’s today.  For one reason, he got TWO containers of Pringles along with his flavored water. 

For another reason, Mom did not stand there talking to someone and totally messing up the routine. 

He sat on the chairs outside the little bank annex there as he waited on me to finish in the self-checkout lane.  I turned to look at him and this is what I saw. 
 

Good old Aaron, still making his presence known in one form or another.  I’ll take happy Aaron, though, in his green shirt…….or is it brown?

Peace out…..and Happy St. Patrick’s Day!

What’s Wrong With Him?

I’ve written in the past about how much Aaron likes to sit in our mulch around our trees or in our flower beds, breaking the small wood chips into very small pieces and watching them fall into his special trash can………his mulch trash can, we call it.  This is Aaron’s way of relaxing.  He often makes up stories in his head during his time in the mulch.  It’s a harmless way of decompressing and dealing with life that he began when he was very young. 

 
 
Neighbors or people who pass by have often wondered what on earth Aaron is doing sitting for long periods of time in the mulch or out under a tree near our garden where there are plenty of old leaves and twigs on the ground that also suit his purposes.  Just this past week our Tru-Green worker came to spray our yard.  He and I were talking on the front porch when out bounded Aaron to see who Mom was talking to and to interrupt if he possibly could.  This nice young man smiled and told me that he had met Aaron.  I could read the meaning behind that smile.  Aaron is unforgettable on several levels.  Then he said that on the day he met him, Aaron was sitting in the mulch pulling weeds.  I did not correct him in front of Aaron.  He isn’t the first person who has thought that Aaron is pulling weeds. 
 

One day a woman walked past our house as Aaron was in the mulch under one of our trees.  She smiled broadly at Aaron, her pony tail swinging as she briskly walked.  He, of course, ignored her.  So she happily said something to Aaron about all the weeds there are to pull.  He looked at her strangely, and the only thing he said to her was, “What?”  So she perkily repeated what she said about weeds……….and he just stared at her as if she had just landed from Mars.  I wonder what she wondered as she walked away. 

Gary and I have recently discovered that Aaron has developed an indoor way of relaxing that is similar to his mulch.  Peanuts.  Aaron loves the peanuts at various restaurants, so I started buying him his own peanuts to have at home.  He loves the huge bags of peanuts from Sam’s.  There is comfort for him in knowing that he has a huge stash of peanuts on hand.  He eats them when he watches television in the family room.  On his lap or on the ottoman in front of him he places a bowl in which he drops the peanut shells and the inner peanut hulls…….peanut wrappings, as he calls them. 
 

One evening I watched him as he ate and I realized that he was hunched over that bowl, looking down into it just as he does his mulch trash can.  I watched him out of the corner of my eye and saw that he was breaking the shells as best he could, just like he does the mulch.  There’s a certain way that he moved his hands and dropped the small pieces into the bowl that was just like he does out in the mulch……and I knew that his indoor peanuts had become just like his outdoor mulch.  How interesting!  Now Aaron has an indoor way of relaxing, so to speak, although slightly fattening. 

It’s another piece of the puzzle that makes up Aaron.  We continue to find that there are still pieces of his puzzle to add.  It’s like Aaron is never totally finished as we discover more and more about him.  I know that others, especially, find him hard to understand….such as the woman who walked by the yard and said something to him about pulling weeds.  Yesterday morning I had an experience with a woman who was confronted with Aaron in all his glory……and she didn’t keep her wondering to herself.

Aaron has had an up and down week.  I think he needs some major mulch time in order to relax!  Even peanuts aren’t quite doing the trick.  Anyway, he and I ran into Dillon’s yesterday morning on our way to meet his group.  He got a drink and I picked up something for our elderly neighbors.  The attendant at the self check-out lane is familiar with me and so we struck up a conversation.  She was asking about our neighbors whom she also knows, and so we stood there talking………and Aaron began pacing.  This is a sure sign that he is frustrated.

“Mom!” he finally said.  “Mom!  We need to go!”

I acknowledged him, but kept talking.

A few seconds passed.  “Mom!  Come on!”

Again I told Aaron that we would leave in a minute.

It wasn’t enough.  “Mom!  We’re going to be late!”

Aaron, I’m almost done.

“Mom!  You tell me to hurry!”

I turned to look at him and saw that his eyes were big and his face was red.

And the woman that I was talking to, whose eyes had been darting to look at Aaron the whole time we were talking, said to me:   “So, what’s wrong with him?”

Her comment took me off guard.  I didn’t expect such bluntness, especially in front of Aaron.  He does see and hear, you know.  In her defense, Aaron was being very unusual and very bold…….especially when you don’t understand him.  I will give her the benefit of the doubt and assume that she was just asking a generic question about him…….not asking about his disability.

But really, can you not look at Aaron and know that he is special?  I could tell that she was irritated with Aaron……and I also saw that the two women near us were also looking at him, as were the bank clerks behind the counter there. 

It was one of those “Just slap me in the face” moments.  I quietly told her that Aaron has autism and that he gets very focused on keeping his schedule.  I could have said much more, but I didn’t.  Not in front of Aaron….and in front of all the other people staring at us.  I just hope that she will learn to be understanding in these situations.  The last thing I needed was to have my nose rubbed in the reality of my son’s behavior. 

I have a way of shrugging those things off and of understanding the other party.  And I need to often remind myself to extend that same grace and understanding to Aaron……who sure can get under my skin at times like that.   Understanding him is key to living with him or working with him in any setting.  Not excusing……..but understanding, even when the puzzle pieces aren’t coming together the way we think they should.

Maybe I should have just driven Aaron and I both home, grabbed his trash can, and BOTH of us sat out under the tree, picking in the mulch and unwinding. 

Or at least grabbed the bag of peanuts and a bowl! 

 

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.

 

 

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!

 

 

 

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!

 

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.