Category: Family

Our SUPER Hero

The first one was at 11:46.  The second at 1:33, and the third at 2:48.  Aaron’s seizures last night…..and how I hate them!  I was able to give him some Ativan when I heard him stirring about an hour after the first seizure.  I think the Ativan helped the next two seizures not to be as severe as they usually are.  I lay in bed during those hours, comfortable but unable to sleep as I listened to Aaron through the baby monitor.  I used some of that time to pray, and to ask God to ward off my fearful thoughts about Aaron and about our world.  I prayed for family and for friends as well. 

I don’t remember exactly when Aaron got up from bed this morning, but I am sure that he knows.  I am also sure that he wrote it in his special notebook that holds those important times that he faithfully records, every single day.  He looked more than a little worse for wear as he came into the kitchen, staring at me sitting at the table.  He told me that he didn’t feel well and I told him that he had some seizures, which he never remembers….thankfully.  He took his pills, and I gave him something for his headache as well.  Seizures cause such awful headaches.

Poor Aaron.  Today was movie day with his group, which he loves, and which he would now miss.  So much for his extra-large popcorn with extra butter and extra napkins and anything else extra that Aaron can grab…..such as toothpicks.  But he was comforted later after I texted Barb to ask what movie they were watching today.  I told Aaron that the movie today was to be Sponge Bob, and Aaron lifted up his hands in surrender as he backed up and said, “No!!  Sponge Bob is NOT my favorite!” 

Some things work out like that for Aaron, and some things just don’t.  We can’t pick and choose on what day his seizures will occur, of course.  It’s just extra sad when he has to miss something special because he’s too sick to go, again. 

I was tempted to just stay home all day with him, but as the morning went on he seemed to be feeling pretty good.  He came into my room and I asked him how his head was feeling. 

“It’s becoming fine,” he answered.  I just love the way Aaron phrases responses like that.  It’s uniquely Aaron, and it makes me stop and smile.  He smiled when I asked him if he wanted to go to McDonalds for lunch, and use his gift card that Aunt Sandra gave him for Christmas.  I even got brave and decided that we would eat inside the restaurant, hoping that he didn’t have a seizure there.  He didn’t.  He was mostly slow and quiet, which is typical on the day following a night of seizures.  He lacks his usual zip.  He’s rather flat.  But he did notice the little girl sitting in the booth nearby with her grandmother, and when she noticed him, they waved and Aaron smiled.  It made me thankful that I had decided to go inside to sit.
 

We went to our vet for dog food, and there in the Dillon’s parking lot we saw this huge truck/limo that made us both laugh, and become very curious.  Aaron wanted me to drive behind the truck/limo so that he could try to decode what the personal license plate said.  And inside Dillon’s, as I chose a head of lettuce, Aaron found his favorite……artichokes!  He stopped to look at the Chinese food in the deli as he always does, and as always I had to tell the server that we weren’t buying…..only looking.   Of course, we had to stop to look at the lobsters, shrimp, and crab legs on ice in the seafood department.  It’s best not to be in a hurry if I go to Dillon’s with Aaron.

 
But it pleased me to see him being happy over such mundane things that we take for granted…..especially on this day after his nighttime seizures.  Giving him a little fun doesn’t cost me much at all, but it sure brings priceless joy to my heart, and to his as well.

Just two evenings ago I was telling Andrea on the phone about Aaron’s seizure that morning.  It always makes the kids sad to hear about his seizures.  I told Andrea, though, that it was such a blessing that Aaron doesn’t seem sad over his seizures, really.  He doesn’t talk about all the things he can’t do or how hard it is to be different.  He doesn’t seem to grieve the loss in his life that makes the rest of us sad for him. 

But don’t you know, that very evening, Aaron said, “Mom, I wish scientists could stop my seizures so that I could be normal.”  This comment stopped me in my tracks, and left me struggling for words as Aaron repeated it again in case I hadn’t heard him.  I assured him that I understood, and that I wished scientists could stop his seizures, too.  I walked upstairs with my load of clean towels, swallowing the lump that was suddenly in my throat.  So Aaron does sometimes think thoughts that he doesn’t often share.  He does wish that he could be “normal.”  I was thankful that he expressed himself in a way that he usually doesn’t…..in a way that he finds hard to do.  But his simple comment made my strong outward reserve crack some, and I had to walk away quickly lest he see my tears.

A couple months ago, Aaron excitedly shared with me yet another story from a movie he was watching.  Suddenly he paused as he described the super hero, and he told me that this hero looked like this:

 
This pose was so out-of-character for Aaron that I just laughed and laughed, which delighted Aaron.  He didn’t even mind that I took his picture.  There he was, Aaron posing as this certain super hero.

In reality, though, as I’ve pondered that funny pose, I realize that Aaron truly is a hero.  At least in my book he’s a hero.  He’s a hero for enduring so much pain and so much hurt and so much disappointment over the years……so much physical and emotional hardship.  Yet he continues to go through each day in his Aaron way, hardly ever complaining.  He pushes through each day despite his seizures and his social difficulties.  He sure is an example to me when I feel overwhelmed or tired or discouraged.

I know many parents of special children who would agree with me on this when it comes to their kids, no matter their age.  I hear their stories often.  Children with seizures, Downs, autism, and so many other issues.  Children who just pick themselves up and keep on truckin’.  And parents who love them with all their hearts.  They are heroes as well, and they are all around us. 

So today, and every day, I know that we live with our special SUPER hero.  He teaches me not to give up, on him or anything else in life.  We’ll keep plugging along beside Aaron, trying to care for him and provide for him.  Trying to understand him and to instruct him, especially when his mouth or his hands get out of line. Trying to explain him when necessary, and to defend him if needed. 

And trying to help him believe that he IS normal and wonderful and special……just like a SUPER hero should be. 

Snapshots of Aaron

Sometimes the hours and the days run together.  I think, “Oh, I’d love to share this about Aaron or that about Aaron,” but I run out of time or motivation, or the stories just don’t seem as funny or meaningful as they did when they first happened.  Often, if I don’t write the story soon after it happens, I feel like I lose my inspiration.  What was I trying to convey?  What did I hope to capture? 

So today I was looking at some pictures I had recently taken.  I decided that perhaps I would share a few of those pictures with you in order to just give a little update on life with Aaron.  A life colored by his unique outlook, which has partially developed because of how autism and seizures affect him, and also because of how his personality was shaped by God.

THE TULIPS

A friend came over for lunch last week, surprising me with a bouquet of tulips when I opened the front door.  When Aaron came home that afternoon, he was delighted to see something unusual on the kitchen table.  There were the purple tulips, in a vase of water, just ready for him to examine.  I immediately told him not to touch them, because Aaron loves to not only touch flowers and plants, but to also squeeze them to see if they are real.  Or he’ll pull the petals and leaves.  Therefore, I know to tell him up front to not pull….or squeeze…..or do any other tests for realness. 

 
The tulips wilted over the next few days, so I finally decided one evening that they were ready to throw away.  Aaron was very happy about this, because it meant that he could examine them more fully than he had previously been allowed.  He had fun rubbing the yellow pollen on his finger as we examined the stamens together.  He then pulled some of the petals off and laid them in a little pile.

“I want every petal on every plant!” he exclaimed as he started his petal pile.  But then he stopped and thought a moment as I offered to put the petals in a plastic bag for him.  “No,” he decided.  “They’ll just turn crispy.”  So he abandoned his petal idea as he left the kitchen. 

A couple days later, he was thinking about the missing tulips and he said, “Mom, what species are you going to get now?”  I told him that I probably wouldn’t replace the tulips.  He continued, “You need to get a different species!  Get roses!”  And I decided that Aaron has a great eye for flower species!

THE SOCKS

Everything in Aaron’s life is significant to him.  Even socks.  I don’t know why he sometimes thinks that he should wear a pair of socks more than one day.  I tell him repeatedly to always put his socks in the laundry every day, and then get a clean pair the next morning.  But every now and then he’ll ask, “Tomorrow, can I wear the ones I wore today?”  And I always tell him no. 

“I’m gonna save these,” he said one day.  Why does he act like he needs to preserve his socks?   He didn’t notice my deep sigh as I told him to go count his socks.

“I have four pair,” he reported after a few minutes.   I assured him that four pairs of socks would last four days, and that I would be doing laundry in order to provide him with clean socks…….LOTS of clean socks…….before the four days were up and the four pairs of socks were gone.  

The next day he came up to me and said very seriously, out of the blue, “Now I have three socks.”  That was just this past Sunday, so after church Gary and I ran to Sam’s.  I bought Aaron a package of ten……TEN…….new pairs of socks.  He was happy.  The pressure was off…..for both of us. 
 

But he wasn’t totally finished.  On Sunday night, before he went to bed, he asked, “Do you want me to wear one of those new socks tomorrow?”  Really, sometimes I feel like I’m going to develop a twitch like the Inspector did in the Pink Panther movies.

THE TIME

 
All of you know that Aaron loves EXACT times.  And he loves to do things, like eating lunch when he’s home, at EXACT times.  The other Saturday morning, he got up and came downstairs.  “Mom, I got up at 7:01.” 

“Did you, Aaron?” I asked.

“Yes,” he replied.  “But I decided not to come out of my room at 7:01 because I thought 7:01 was too early.”  He stood there staring at me.

“Should I have gotten up at 7:01?” he finally asked when I didn’t give him his desired response. 

I told him that it was fine to get up around 7:00.

“7:01,” he replied.

Whatever.  But I didn’t say that, because it’s very important to Aaron to be precise with time.  I just smiled and let him continue.

“I’m telling Dad I got up at 7:01,” he said as he headed for Gary’s study.  Yep, it’s that important.

THE EATING

Today Aaron stayed home because he had a seizure this morning……at 7:27.  Later, as he had recovered, I asked him if he wanted something to eat before he laid back down.  He looked at the clock, and I knew what was coming.  It wasn’t 12:00.

“Is it 12:00?” he asked.  Then he saw that it wasn’t 12:00. 

“No,” he continued.  “I don’t want to eat until 12:00.”

He woke up later, a little after 12:00, but that was still an allowed time for him to eat lunch because it wasn’t before 12:00.  AFTER 12:00 is allowed.   These things are important to know. 

He ate some pizza.  He often has a spoon with his pizza, and very often he will include the whole set of silverware…..knife, spoon, and fork.  Never mind that he doesn’t use the utensils.  He needs them there beside his plate. 
 

And the bowl, of course, in which he places his pepperoni to be eaten later.   I don’t know why he won’t eat the pepperoni with his pizza, but he rarely does that.  He places the pepperoni in the bowl, and then eats it last, when all the pizza is gone.

THE ANIMALS

I’ve also told you how much Aaron loves his stuffed snake and his stuffed skunk.  They must be in his bed every night, where he meticulously arranges them until they are just right. 

This morning, after Aaron’s seizure, I had to wash his bedding.  This time I also needed to wash his snake and skunk.  The skunk has seen better days.  He had a large rip on his head and he was missing some stuffing.  I mentioned throwing him away, but I could tell Aaron was bothered by that.  So I sewed up the dirty skunk, and then tossed him and Mr. Snake in the wash.  That’s why later we didn’t have snakes on a plane, but we had a snake and a skunk in the dryer.  They are clean now and ready to once again be oh-so-carefully placed into Aaron’s bed tonight. 
 

THE TOOTHPICKS

On our way to church this past Sunday, I climbed in the passenger seat of our van and closed the door.  When I reached for the handle, I saw them…..the toothpicks that Aaron had confiscated a few days earlier from Carlos O’Kelly’s.  Gary and I laughed when I held them up…..a reminder of Aaron and of Aaron’s ways.  He does love his toothpicks, like he loves his silverware that he often doesn’t even use.

 
That’s how it is with Aaron.  We see his marks all around us in the ways that he lives his life.  It seems no matter where we turn, we are reminded of Aaron and of his special ways.  We may laugh, or roll our eyes, or bite our tongues, or sigh deeply, but there’s no getting away from all the ways that Aaron leaves his mark on our lives and in our hearts. 

And we are richer for it. 

 

 

  

 

DO Sweat the Small Stuff!

Aaron seems to have almost fully recovered from his no good, very bad seizure episodes that began on Thursday night and went into early Saturday morning.  This was a tough round for Aaron, taking a huge toll on him physically and mentally.  He slept and slept…..he’s been very slow in both mind and body…..and he hasn’t wanted to eat much.  Not eating much is a sure sign that he isn’t himself.  He also developed a sore throat that didn’t help, and of course his bitten tongue has made eating difficult.  Yesterday, on Sunday, we saw more of the old Aaron return….and it was a welcome sight, even when he was trying to feed the dog. 

On Saturday he finally woke up “for real” around 12:45, meaning that he was more alert and more able to really talk to us.  It was around lunch time….although we know lunch time to Aaron is as close to 12:00 sharp as he can make it……but I offered to heat him some potato soup anyway.  I had made the soup the day before…..the day of his terrible seizures…..but all that day he hadn’t been able to eat a thing.  I hoped he could enjoy his favorite soup on Saturday, so I heated him a bowl.  He couldn’t eat it, though, stopping after managing only a couple spoons full.  I put it back in the frig, and he hasn’t touched it since. 

Something else unusual is that he offered to take a shower without being prompted.  He actually wanted to shower, so as soon as he was steadier we let him get cleaned up.  Later, he and I went on a walk around the yard with Jackson.  It was good for Aaron to get some fresh air on that beautiful, warm January day.  Then we soon got in the van and drove up to check out the car wash, which was still too crowded, so we went on down to the Little Caesar’s pizza shop.  He and I waited in the drive-through line, and soon I looked over and asked Aaron if he wanted some bread sticks.  I rarely let Aaron have bread sticks, though he always wants them.  He just doesn’t need the extra calories when he’s going to eat so much pizza.  He was very surprised when it was ME who brought up bread sticks.

“Yeah!!” he responded when I asked him if he wanted them.  His eyes brightened and he was very happy…..and I was happy, too.  What a little thing that meant a LOT to Aaron.  And to me, if anyone deserved some bread sticks at this moment, it was Aaron.

Once at home, he only barely managed to eat one piece of pizza and one bread stick.  Normally, he would have tried to wrangle that whole pizza down his throat, plus all the bread sticks.  Honestly!  But not on Saturday, when he was still recovering, and also fighting that sore throat and damaged tongue.

Aaron continued to recover yesterday, gaining his strength and his spunk.  His appetite still wasn’t back to normal, but he was talking more and managing the stairs more easily.  He began to watch his Indiana Jones movies that he had started last week…..and we knew he was feeling more like himself when he started talking to us about them as well.  I know that Gary and I will soon tire of his repetitious talk about these movies, but I also know that we will relish having old Aaron back with us.  Remind me I said that in a day or two when my brain is numb from his constant talking.

I stood in Aaron’s room on Friday night, when he was still so affected by the seizures, and I watched him get ready for bed.  I helped him get the covers on his bed just right according to Aaron standards, and then I stepped back as he finished his routine.  He was slow and unsteady, but nothing was going to stop him from getting his room exactly perfect. 

He carefully pulled back his covers, and every bit as carefully placed his stuffed snake in his bed.  He made sure that Mr. Snake was very straight, with just enough of his head on the pillow.  Then Aaron took his old stuffed skunk and placed him right beside Mr. Snake, just so-so.  The skunk’s little tail was arranged correctly, along with his paws and his head.  Aaron didn’t speak a word, working slowly with purpose……and slowly because of the seizure effects.  He pulled the covers up when he was finished, letting Mr. Snake’s snout still show, but totally covering the little skunk.

Then Aaron smoothed out any wrinkles that he had made in his covers before he headed around the bed to pull back the covers on his side.  He got his long pillow situated just the way he likes it, pulled over to just a certain point that only Aaron knows.  He made sure that his nightstand items were still where they were supposed to be, in the right place and order.  Then he picked up his notebook in which he writes the times that he gets up in the mornings and the times that he goes to bed at night.  He had to write in the time for that morning since it was blank because of his seizures.  I watched him write 8:17 A.M., although I knew that was not the correct time that he got out of bed.  I wouldn’t tell him that, though, not for anything.  Then he wrote down his going to bed time and carefully closed his notebook, placing it back in the floor with the pen on top, just right. 

 
He still had his glasses on, so I asked him if he wanted me to put them on his bookshelf for him.  He agreed as he slowly took them off, handing them to me.  “Put them by my watch,” he instructed me as I turned to lay them on the top shelf.  So I did as I was told, and I laughed inwardly as Aaron leaned around to examine my placement.  I hoped it was correct…..and it was….so Aaron was finally, I hoped, ready to actually get in his bed for the night.

I got his covers pulled up close around him the way he loves, and we talked for a minute before I turned his lamp off.  But just as I was shutting his door, as he so often does, I heard him say, “Mom?”  So I opened the door and said, “Yes?”  And he paused before I heard, “Mom?  Is it almost 10:00?” 

“Yes, Aaron, it’s almost 10:00,” I assured him.  You see, Aaron can barely tolerate going to bed before 10:00.  So just as his snake and his skunk and his covers and his pillow and his nightstand and his going-to-bed and his getting-up times and his glasses beside his watch and his covers pulled up…..ALL had to be JUST right…..so did his actual time to bed.  Or at least as close to right as possible.  He had to ask, even though his clock was there beside him on his nightstand right where it was supposed to be.  I guess he just had to hear Mom confirm to him that it was near enough to 10:00 to go to sleep.  The world would still turn, even though it wasn’t exactly 10:00….or later.  So I closed the door and Aaron quickly fell asleep.

Aaron doesn’t act like his seizures greatly concern him.  If they do, he doesn’t say much about it.  He has wished that he didn’t have seizures and that he didn’t need to take pills, but he doesn’t seem to get depressed or sad about it.  He manages to push on ahead despite the pain and the side effects that the seizures cause.  But don’t mess with his bedtime routine!  Don’t ask him, if he has any cognizance at all, to go to bed with his two stuffed animals out of place or his covers wrinkled or his glasses not beside his watch or his time not written in his notebook.  That would be disastrous!

These facts are some of what is so amazing about autism, and about Aaron.   I guess, in the long run, it helps Gary and I handle the stresses of Aaron’s situation a little easier.  We talked about Aaron’s bedtime routine that night, and we laughed…..when there hadn’t been much to laugh about that day, for sure.  We laughed because Aaron is truly unique, and his being unique is often a cause for us to smile and even laugh. 

I can’t take away Aaron’s seizures, but I can usually accommodate his desire for order and routine in his world.  My world, and Gary’s world, may be anything but orderly in the process…..but that’s OK. 

And one more thing.  You know the saying, “Don’t sweat the small stuff?”  With Aaron it’s just the opposite.  He DOES sweat the small stuff, and seems to let the big stuff roll off his back.  Sometimes that’s very freeing when we stop to consider that the big stuff in Aaron’s life is at times really serious.  It helps get our minds off our sadness and fear as we are pulled by Aaron into focusing on stuffed snakes and wrinkled bed covers.

Leave it to Aaron to pull us into his world, and to get our minds off of our other worries……with a stuffed snake, no less!     

 

 

Laughter, Fussing, and Frowning

Aaron came into the kitchen early this morning, before Gary left for work, and the very first words out of his mouth…..the. very. first. ……..were, “Mom, so you’re saying that War of the Worlds was an old movie?  It was an old movie that had been made before?”  It was as if he was continuing a conversation that we had left three minutes ago, instead of nine hours ago, when he was going to bed.  I had to chuckle, which was better than crying.  You see, all weekend Gary and I endured endless discussions about War of the Worlds…..and Terminator.  Take your pick.  We were completely saturated with both movies, to the point that several times during the weekend we had to tell Aaron, “Enough!”  No more talking of these movies for the foreseeable future…..which wasn’t nearly long enough, in Aaron’s book……and so we would soon find ourselves once again immersed in movie discussions. 

Thankfully, Aaron moved right on to his next topic of interest.  “Mom, I woke up at 5:00!!”  Of course, I asked him why as he stood there staring at me waiting for me to ask him why….and he continued.  “The covers on the right side of my bed were not normal.  They were not like the covers on the left side.”  He again stared at me as he waited for yet another response, so I gave him another response by asking him why the covers were not normal and he gladly answered.  “The covers on the right side were ALL the way out!!  The covers on the left weren’t all the way out.”  So this is what I heard on the monitor at 5:00 this morning.  Aaron cannot tolerate abnormal covers on his bed, so he was up and about re-adjusting the covers so that the right matched the left.  And I laughed at Aaron’s description of his early morning effort to normalize his bed, and he was quite proud that he had made mom laugh, though he didn’t understand…..or care to understand….why.

Soon Gary was down, putting on his coat to leave for work, and Aaron immediately launched into his War of the Worlds observation.  Gary was still saturated by two and half days of movie talk, so he answered Aaron’s question that he had just asked with a little humor……which Aaron did not appreciate.  Aaron knew we were tired of movie talk, and he interpreted Gary’s humor as being insulting…..and so Aaron in turn insulted Gary……and we in turn fussed at Aaron…..and our day was off and running in typical fashion.  Laughing one second…..frowning and fussing the next. 

These ups and downs are true for all parents.  It seems more exaggerated with Aaron, at least to us, because of his age and his persistence.  He is not easily deterred from the paths of conversation that he sets out on, or the paths of behaviors.  We so wish we could detour him from some of the things he says and the actions he takes.  I wish this every time I read another incident report from Paradigm, where Aaron has taken the path of anger and rudeness.  He gets in so much trouble when he is trying to “tease” someone, or when something or someone sets him off. 

But then he can be so hilarious sometimes, and so endearing.  This weekend, he was very exhausting with all his movie talk…..following us around the house as he talked, or finding us downstairs watching football.  But then he would come out with something that made us laugh.  Like the football games, which he observes in his unique Aaron way:

          “So who are you guys voting for?”

          “Does the team you’re voting for have the most points?”

          “Does that football player have a pacifier in his mouth!!?”  (It was the

          mouth guard.  HaHaHa!!!)

          “I bet the man who taught the Carolina Panthers is not very happy that they only
          have 17!”
 
His humorous comments were like a breath of fresh air…..a wonderful break from War of the Worlds or Terminator.  When Aaron and I played Skip-Bo last night, I had to once again forbid any further movie talk.  We listened to Disney music on Pandora, and Aaron had fun trying to guess what movie the songs were from.  He would cock his head to the side in deep thought, and I knew he was re-living those old movies.  I enjoyed his reactions, and I relished another movie reprieve.  We had two games of peace, and then the second it was all over, he launched into more movie talk.  NO!!!!

We went to McDonalds for lunch yesterday, and again urged him to think of other things to talk about.  He was mostly quiet as he ate all of his burger first, and then tackled his French fries.  He will only eat one food item at a time.  He methodically ate every French fry, one at a time, by dipping them slowly in his very, very full ketchup cup and then taking a bite……dipping slowly again and taking a bite…..over and over.  At least it kept him busy and not talking about movies.  And then he spied a little girl looking at him and he stared back.  I was nervous.  Would he stick out his tongue or be nice?  We never know.  But he smiled at her and then said, “I was smiling towards the little kid.”  I was relieved at his sweetness, wishing it could always be the case with Aaron.

Last night as we watched the Broncos losing the football game, we heard Aaron’s loud thumping down the stairs.  Gary and I both commented about it, how soon it was that Aaron had just been downstairs to talk more about movies and here he was coming down again.  It’s wearying, really.  Aaron bounded in the room and stood between our chairs, looking down at me as I sat there looking up at him…..waiting with dread for his latest movie verbal digest once again.  But this time, Aaron wanted to hand me his nearly empty bag of Skittles…..the bag that he had been eating out of all weekend.  In the bottom of the bag were several remaining Skittles.

“Here!” Aaron said as he held the bad toward me.  “You can have the rest of these, Mom.”  I thanked him but told him that I really didn’t want them right now, and that he should eat the last Skittles.

“No!” he insisted.  “I want you to have them.”  And with that, he put his hand in the bag and dug out the few remaining candies.  He put his hand toward me and I held my hand out, receiving his gift.  I really don’t enjoy eating something that Aaron has fingered as much as he had those Skittles…..because I just don’t know where Aaron’s hands and fingers have been, honestly.  But God has blessed me with a strong immune system, so I took the Skittles, hiding from Aaron my hesitation. 

I laid them on the table beside me, and Aaron picked up a couple of the orange ones because they look green to his color blind eyes…..and he wanted to show Gary the new green apple ones……but he realized they were orange, so he put them back in my little pile.  More handling, I thought.  But while he stood there watching me, I picked them up and ate them.  This made Aaron happy.  He wanted to share with me his special candy, and he knows that Gary doesn’t eat candy, so I was the recipient of every single Skittles…..germs and all.

And today I’m alive to tell about it.  I don’t even have a sniffle or an upset stomach.  But I have the memory of Aaron’s sweet sharing.  He shares with us in so many ways, in many different colors and flavors, his life and his take on it.  Like I said earlier, we can be laughing one minute, and then frowning and fussing the next.  There are so many ways we wish that we could change our big, loud, rough Aaron.  But then there are many ways that we wouldn’t change a thing about our kind, sharing, funny Aaron. 

Yet he comes as a package, as all children do, and we know that we have to love all of him.  We DO love all of him.  We cherish the positive and we work on the negative.  We ask God for wisdom, and we ask others for forgiveness or understanding when they are affected by Aaron’s behaviors.  We share life with Aaron, usually Aaron’s way.

Laughter, fussing, frowning…..germs and all.  It’s worth every part….every color.

Love Rules!

Here we are.  It’s the third day of our new year.  The third day of new beginnings, so I’m told, and new attitudes…..new challenges and new goals……new everything.  But I have our washing machine running this morning and it’s reminding me that the sameness of life also continues despite my desire to work up some enthusiasm for newness.  Aaron had a seizure last night and so once again I am washing his bedding from the mattress pad up to the top layer…..his favorite cheetah blanket, or whatever animal it represents.  I’m not complaining at all.  It’s our life and I’m thankful that I’m here to be a part of it, and to care for Aaron.  It’s certainly not new.

Aaron doesn’t care for new, unless it’s a new video or a new bag of candy.  He doesn’t like new routines or new schedules, and he doesn’t like the people or the holidays that cause a disruption to his sameness.  On Thanksgiving Day, Aaron came into the kitchen while I was preparing our meal.  He asked when we would be eating.  I told him it would probably be around 2:00.  He stared at me for a few seconds and then said, “That’s why I was thinking if I could eat lunch.”  I didn’t have to look at the clock to know that it was nearly 12:00 and to Aaron, 12:00 means lunch……Thanksgiving Day or not.  He did agree to wait for his meal, but he did give remaining in his routine his best effort as well.

We try not to give in to Aaron’s routine oriented way of viewing the world when there are special days or events to consider.  We give it our best effort in order to include Aaron in our family traditions and our special times together.  Yet we know that at times it’s not only difficult but nearly impossible for Aaron to comfortably enter into our celebrations together as a family.  The complexities of his autistic world, at times, will simply not allow him to move beyond a certain point.  There are several reasons for this dilemma that he…..and we……face during the holidays.

One reason revolves around conversation.  Aaron doesn’t understand and is rarely able to enter into the normal ebb and flow of family conversation.  Andrea and Andrew both came home for Christmas on Christmas Eve.  We sat around the table and talked that evening, and all of us noticed Aaron.  He had moved to one end of the table.  His eyes darted back and forth between us as we talked.  We were catching up with Andrea and Andrew……their lives…….their jobs……their friends.   Soon Aaron would loudly interject with his “Hey!!”  And we would all look to him as we gave him an opening to talk, but he often didn’t quite know what to do with this opportunity to enter into our flow of talk.  So he would pause and then he would continue.  “Uh…..well…..did you know that my favorite character on Phantom of the Opera is the Phantom?!” 

His comment didn’t fit at all into what the rest of us were discussing, but we’re used to this with Aaron, so we all commented in some way.  We really tried to act as interested in what he was saying as we did with the rest of our conversation, but sometimes it’s hard.  And if you give Aaron an inch, he’ll take a few dozen miles and he’ll talk until the rest of us are…….honestly……..bored beyond words.  So after we all responded to Aaron, we would pick up our conversation where we had left off and once again Aaron would sit there with darting eyes and bated breath, waiting for his next opportunity.  “Hey!!”  And we waited.  “Uh…..well……did you know that there’s a Queen alien?  Is she bigger than the other aliens?  Why do you think there’s a Queen alien?”  So then it’s our turn to say, “Uh….well…..we didn’t know that, Aaron.”  Come on.  Show interest……show enthusiasm for Queen aliens and for Phantoms and for whatever else Aaron chooses to talk about, we’re all telling ourselves. 

Another reason that Aaron gets stuck during the holidays in his point of no return is the change in his routine.  Everything is messed up.  His meal times……watching Wheel of Fortune with Mom…..bedtime rituals, especially if Mom doesn’t come right away to say goodnight……playing SkipBo……..having his bathroom to himself……and so much more.  His brain is soon on overload, no matter how Gary and I try to maintain his sense of normalcy. 

The third reason for Aaron’s holiday struggles……and probably the straw that breaks the camel’s back……is having to share his time and space with others.  Aaron has gotten used to being the only “child” at home now.  He is doing better with having Andrea and Andrew come for visits…..probably because he knows he can talk and talk to someone other than Mom and Dad.  We weren’t sure how he would react to Megan, Andrew’s girlfriend, being here again this year.  Megan arrived the day after Christmas.  I was a little nervous, but I greatly relaxed as we all stood in the kitchen chatting and I noticed that Aaron was happily talking.  Soon I had him tell Megan about his movie of the moment…..Phantom of the Opera……which fortunately is one of Megan’s favorites.  Aaron loved feeling included as all eyes focused on him, and he really enjoyed our interest in hearing him sing his favorite Phantom of the Opera song.  He’s hilarious when he sings and we all laughed with him as he relished being the star.

 
And then I goofed.  Aaron had returned to his room, so I asked Andrew to go up and tell Aaron that it was time to eat.  There are reasons that this wasn’t a good idea, but suffice it to say that Aaron from that point forward began to do down the path of frustration and anger.  He wanted me to come get him for dinner, for one thing, and though we roll our eyes at that, it was this important to Aaron.  His nearly overloaded system was beginning to crack under the holiday strain.  He was rude to Andrew during lunch and we knew then that we were facing an uphill battle.  When we later opened presents from Megan, Aaron sat with his back to Megan and Andrew.  He was edgy still. 

Then off we went to walk through Botanica and see the Christmas lights.  It was cold and we all bundled up, and piled in the van……including Aaron.  I let him have his favorite, normal passenger seat, beside Gary.  And wonderful Gary walked beside Aaron and kept defusing him the whole way through Botanica.  You can see in the pictures that Aaron is NOT seen.  When he’s in this frame of mind, you can forget pictures.  They only make him angrier.  We were way down that frustration path at this point.

 
 
We got home and I was hurriedly taking off my coat, getting ready to set out all the snack foods to enjoy while we played our Christmas games.  Aaron knew he was welcome to stay downstairs and play the games with us, but Aaron detests this part of Christmas.  He doesn’t like the silliness and the loud laughter…..at all!  And in the mood he was already in, we knew he wouldn’t want to stay.  So as I removed my coat, Aaron turned to me and loudly said, “Mom, I wish Andrea and Andrew and Megan would just leave, and that I could have things normal again!”

Embarrassing, yes…….especially because Megan is still new to all this and we so wanted her to feel welcome.  Thankfully she’s kind and understanding.  You must be in these situations with Aaron.  But Aaron’s comment was also telling as he revealed, in his blunt way, that he wanted his normal life back.  The night went downhill from there, if that was possible.  The five of us totally enjoyed the games, but we were often interrupted by Aaron’s heavy footsteps on the stairs and the floor as he came down to check things out.  He really wanted to enter in, I believe, but he didn’t know how to comfortably do that.  At one point, he looked at the container full of wrapped Bingo gifts and he softly asked if he could have one.  That made us sad.  Of course, we let him unwrap one and he was happy to get a Wal-Mart gift card.  Then off he went to stew in his anger some more.

 
Aaron and I eventually ended up in my bedroom, where he talked angrily about how we only love Andrea and Andrew, and only want to talk to them….and to Megan.  He cried for a long time, a sure sign of deep frustration.  My heart hurt for him as I tried to comfort and assure him of our love.  I really believe that Aaron senses a difference in how we talk…..our inflections and our words……when we talk to him compared to the others.  Try as we might, we can’t manufacture the same interest in his comments compared to theirs.    Aaron is perceptive……so perceptive. 

I also know that he needs repercussions for poor behavior, so I took the movie away that Andrew got him for Christmas, as well as the lap desk from Megan.  Finally Aaron came downstairs, face and eyes red from crying, and he gave a semi-apology to them.  I helped him into bed, but it wasn’t long before we heard him coming back downstairs.  He walked into the room where we sat, tensely waiting for another outburst.  But in his hand he carried his Ghostbusters movie, which he thrust toward Andrew.  “Hey Andrew!” he enthusiastically said.  “Have you seen this movie?”  And Andrew, with equal enthusiasm, said that he had and then he said, “Who you gonna call?”  Aaron laughed and took the movie back upstairs…..and we knew that his crisis was over and all was well once again.

The next morning, Aaron wanted to give some of his crescent rolls to Megan and Andrew for breakfast.  And when they left for a couple days, and returned to see us again, Aaron was fine with that.  I wish this scenario wouldn’t be repeated next year, but I’m realistic enough……we all are…..to know that it very well might be.  I returned Aaron’s movie and lap desk from Andrew and Megan to him, hoping that he understood the consequences of poor behavior and the reward of good behavior.  We always hope that Aaron will understand and that things will click in his brain, but his brain isn’t like ours at all.

 
So we do our best to understand Aaron, and to love him in all his unique and often frustrating ways.  Like Andrea said to Megan on the night I was upstairs with Aaron, as they cleaned the kitchen…..”So now you see what it’s like to be a part of our family.”

Yes, it’s not easy to be a part of this family sometimes.  Sometimes I think…..AUTISM RULES.   But then I realize that only one thing really rules.  LOVE RULES!!  We don’t necessarily love autism, but we all love Aaron.  We seek to understand autism, and therefore better understand Aaron.  I see growth in all of us that has occurred over the years.  It’s the growth based on our experiences with Aaron, and growth based on knowing that Aaron may improve in some areas, but he will never be totally like the rest of us. 

We may feel beat up and tired and angry ourselves, but we must remember that love rules over all.  God’s love for all of us, and our love for each other and for Aaron, will remain firm during these rough spells.  There’s nothing new about that, even in this new year. 

What a long post!  I have laundry to put in the dryer, and much more to wash.

With love. 
 

 

 

Glittery Moments

 

My day yesterday, Sunday, began at 4:12….to be precise, like Aaron.  Aaron had a seizure for the second early Sunday in a row.  Then he had another at 5:45, so I just stayed up then, knowing that I wouldn’t be able to go back to sleep.  This is a very busy, tiring time for everyone.  To start my day off so physically tired wasn’t what I had planned, but as usual my thoughts went to Aaron and how awful he was going to feel when he woke up.

 

I heard him upstairs through the baby monitor later in the morning, stirring and stretching and then getting out of bed.  I knew that he was marking his wake-up time in his notebook that he uses to record all that important information about his life.  Later he slowly made his way down the stairs.  I noticed that he had on a different pair of pajamas than he had worn to bed, and I knew right away what had happened.  I went up to his room after he and I talked for a minute to gather up his wet linens…..all of them, including his waterproof mattress pad.  Poor Aaron.  Such hard seizures take a toll on him, and can be embarrassing as well.

 

So the day began in earnest with mounds of laundry and mounds of Christmas preparations and plans to accomplish.  I was thankful for the time that day to prep and plan, but as the day wore on I was very aware of my fatigue…..fatigue that was probably only going to increase as the week continued.

 

That evening, as I finally cleaned off the kitchen table to some degree, I was looking forward to a little time to chill out.  Catch up on Facebook, look at emails, read the news…..   But of course, I wasn’t downstairs very long before Aaron came thumping down the stairs.  First he talked to Gary about the movie he had finished watching today, and then the current movie he was now watching.  Soon he came to me at my computer, and began the same recitation.  Gary and I finally had to tell him that movie talk needed to stop.  We were depleted when it came to his long movie reviews and endless questions.

 

I had told Aaron earlier that maybe we could play a game of SkipBo……emphasis on MAYBE.  As Aaron left me at my computer, the last thing I really wanted to do was to drag myself back upstairs and play a game of cards with Aaron.  I was tired.  And I was very weary of listening to all the movie talk.  But we hadn’t played SkipBo in a while.  This time of year takes much of the fun time away.  I felt badly for Aaron, who asks me every single night of his life to let him know if we can “do something, like SkipBo …..”

 

It was around 9:30 when I went upstairs and asked Aaron if he wanted to play a game of SkipBo.  He was very happy to hear me ask that question, so while he took his pills I shuffled the cards.  We had a normal game, with me having to monitor Aaron’s every move in case he cheated and with Aaron thinking he had to monitor my texting with Andrea.  I could feel my nerves getting a little more worn.  Of all nights to have a slow game, this was not the night!  But was it ever a slow game!  Where were all the 3’s?!  I was getting irritated for sure.

 

Finally the game was over!  I wasn’t nearly as happy about winning as I was happy that I could go to bed at last……after turning off all the Christmas lights, fixing the coffee pot, helping Aaron get his bed all perfectly ready, and listening to his non-stop chatter.  Ugh!  All these thoughts were going through my mind as I put the cards back in their box.  I looked up then to see Aaron sitting very still across the table from me, peering down at something on the table.

 

“Mom?” he asked.  “What’s this?”  I thought he was pointing to a little indention on our distressed kitchen table that’s become much more distressed under Aaron’s attention.  I brushed him off with a quick “I don’t know.  It’s just a little dot.   A little mark.”

 

Aaron wasn’t deterred.  “No,” he said.  “It’s sparkling.”

 

And I knew then what “it” was.  “It” was a tiny little piece of glitter from all the wrapping paper and glittery tissue paper I had used that day.  Of course, Aaron noticed this miniscule piece of glitter that to most of us would have gone totally unseen.  Or seen, but not cared about.

 

Not so with Aaron.  He was intrigued by the tiny sparkle that caught his eye.  He knew that it was worth exploring, so he did.  Furthermore, he hoped that I would do the same.  I was headed to the coffee pot when I stopped and turned around.  There sat Aaron, pointing to the itty bitty glitter, and I was drawn to that scene as I stood there for a few seconds.  I smiled as I realized that I should not miss this moment.  So I walked back over to the table, and I bent over the little glitter particle with Aaron.  We both smiled as we noticed the glitter’s tiny shimmer.  I realized that this glitter wasn’t round, but that it had definite sides.  I counted six sides, and so Aaron and I talked about the fact that this glitter piece was in reality a hexagon.  It was pretty and sparkly and more complex than either of us realized until we took the time to look at it carefully.

 

All day today I’ve been thinking about that glitter moment with Aaron, and what I would have missed had I dismissed his interest in favor of a coffee pot to fix and Christmas lights to unplug.  I would have missed a sweet moment with Aaron……a time of simple sharing…….a smile……a discovery.

 

At this time of year, especially, but at any time of year, I need to often remind myself to stop my fussing and flittering……and to take some time to see what Aaron sees.  Take some time to see who Aaron IS.  See the world through his eyes, with all its complexity and its beauty.

 

And to apply this lesson to so many other areas of my life as well.  Stop to see what’s around me that’s not so obvious, lest I miss out on some real beauty and some sweet moments.  Don’t let my schedule or my tiredness rob me of discovering some sweet moments with those I love…..or with those whom I need to know better…..or with those that I can help.

 

Coffee pots and other chores will always be there.  Glitter has a way of blowing in the wind and never being seen again.  I need to treasure it while I can……with Aaron, of course.

 

The First Snow

 

The first thing I did when I got up this morning was to look out the window to see if we had gotten any of the possible snow that has been talked about over the past few days.  If you look hard, like between the cracks of our brick walkway out back, or on our roof, you can see a little faint dusting of snow.  It’s just a tiny bit, but it would have been enough at one time to keep up our old family tradition.

 

My mind goes back on this cold morning to other cold mornings of my childhood.  I remember how Mom would always be up very early, faithfully fixing breakfast for Dad before he left for his job at the railroad station nearby.  Then she would do the same for us, getting five breakfasts ready for us kids before we left for school……and somehow getting herself ready to head out the door for her own job.

 

But in the fall or early winter, there was often one magical morning that we would wake up to the sound of Christmas music.   Christmas music didn’t start playing at our house full time until after Thanksgiving.  One holiday at a time, please, in the King household.  However, there was one moment that Christmas music was played before the allowed time…….one day that it was perfectly fine to hear the early strains of We Wish You a Merry Christmas.

 

That time was on the occasion of the very first snowfall.  It didn’t matter if the first snowflakes fell in October.  If there was a bit of snow falling from the sky, Mom would put on a Christmas record……and if it was in the morning, we would wake up to the sounds of Christmas in the house.  And we knew…..we knew without even getting out of bed……that there was snow on the ground.  Of course, we would rush to the windows to see if there was enough to allow us to stay home from school, but there rarely was.

 

Mom and Dad loved snow.  Even when we all moved away from home, there was that one special day that our phone would ring and when we answered we would only hear a Christmas song being played.  None of us would have to guess or wonder what that was about.  We knew!  It was Mom and Dad announcing with delight that they had gotten the first snowfall of the season.  We all had a little contest going, hoping that we would beat them to the punch and be the one to call first with that Christmas music playing loudly, holding the phone up to the speakers so that they could clearly hear it.   Then we would put the phone to our ear and hear them say, “You got snow?!”  Yes, we got snow and it’s so beautiful, and on and on we would go…..laughing as if this was the greatest day ever.  And it was, in a sense, for Mom and Dad passed their love of snow on to all five of us children……and it was simple and sweet and so much fun to share that first snowfall of the season tradition over the years.

 

But it makes me a little sad this morning to know that I can’t call Mom to share my first little snowfall with her.  Well, I could call her…..but she would wonder who I am…..and why am I playing that music to her……and just what is that song, anyway?  Mom has Alzheimer’s and she doesn’t remember our old family tradition.  She doesn’t even remember our family.  So a phone call like that would only frustrate and confuse her, and would be upsetting to me as well.

 

I’m thankful for the sweet memories, though.  For the special traditions that our family had, as all families do.  I’m thankful that during the time Dad was dying of cancer, God allowed him to enjoy lots of snow during that November.  I remember him sitting in his wheel chair at their sliding glass doors, watching the snow and enjoying the hungry birds crowding their bird feeders on the deck.  Thankful that he got to see the beautiful Christmas tree all decorated the way he loved and listen to the pretty Christmas music.

 

It makes me realize how much we need to cherish our families and our times together, for it all goes by so quickly.  We live together for such a very short time before everyone scatters.  Brothers, sisters, children…..living here and there in this busy world.  So build the bonds of family strong while the children are young……develop the traditions…..and stay in touch over the years.

 

Merry Christmas, everyone!  It’s a little early, but there IS some snow on the ground.  If you look real hard, you can see it.  But it’s enough.

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

Sharing Aaron

Share:  to partake of, experience, or enjoy with others.

Aaron, for some unknown reason, has been in a sharing mood lately.  It’s encouraging to Gary and me to see positive traits such as this in Aaron.  Anytime he thinks of others beyond himself, besides slapping them on the back or making a rude remark about them, makes us surprised and thankful.  His sharing of late has come in the form of bringing us little portions of his special snacks.  A couple cashews here, a few gummy bears there, a piece of gum thrown in the mix……it’s all been part of his sharing frame of mind recently.  Never mind that we are often fearful of actually putting any food item that Aaron brings us in our mouths.  We just never know where those hands of his have been, if you know what I mean.  According to our scientist daughter, being exposed to germs helps to build our immune systems.  Therefore, Gary and I should never be sick again in our natural lifetime. 

There are other forms of sharing that go on with Aaron, as well.  During supper a few days ago, Aaron told us about the song “YMCA” and how he had heard it on the radio in his day group van.  Aaron liked this song and he wanted to tell us all about it, and to ask lots of questions about it.  I noticed that Gary was on his phone and in just a few moments he held his phone up for Aaron to see and to listen…..to The Village People singing “YMCA.”  I just stopped eating and watched this scene.  Gary held his phone for Aaron as he watched Aaron’s reaction to the song and to the antics of The Village People as they did all the funny motions.  I watched Aaron’s face, too, but also Gary’s as I enjoyed the pure delight brought on by this simple moment.  Soon Gary pulled up another group, wanting to watch Aaron’s face when he told him to guess the name of this next group…..The Monkees!  Aaron laughed and we laughed as we both enjoyed the look of more delight on Aaron’s face.  “Yeah, yeah, we’re the Monkees…….”  

We were sharing Aaron…..and it was so much fun.

On Saturday afternoon, while Gary was immersed in being our IT man and working on my computer, I asked Aaron if he wanted to go out with me to do a little shopping.  He stood in the bathroom while I fixed my hair, hovering, thinking that his hovering would make me hurry and we could get this show on the road.  Soon he was coughing.  “You made my breath feel strong because of hair spray!” he sputtered.  That’s when he decided to wait for me downstairs.

Aaron’s all about shopping, always hoping that he’ll come home with some treat or item that’s just for him.  On the way to Big Lots, he asked, “Mom, is it about clothes?”  I assured him that this trip wasn’t about clothes, and he was able to relax then.  He helped me look at seasonal rugs, and then off we headed for Petco, where I told him I wanted to look for dog bed covers for Jackson……no rugs at Petco for me….and no clothes. 

We struck gold before we even got in the store, because there in the parking lot was a couple with a cart full of four amazingly adorable Mastiff puppies.  Aaron headed straight for them and they gladly let him pet their puppies.  Once in the store, Aaron had to show me the fish….the hamsters….the gerbils….the various birds….the ferret…..   I commented on how much the ferret cage smelled, so as we left the store, Aaron took it upon himself to stop at the front counter.  He didn’t care that there were people standing in line.  He stopped and informed the cashier that his mom said the ferret stunk, as he laughed and rubbed his hands together, and everyone stared at him…..and mom told Aaron to come on as she walked out the door like nothing at all was unusual.   Sharing Aaron…..

We ran into Bed, Bath, and Beyond….which Aaron confused with Bath and Body Works, so he was hoping it didn’t stink like all those things do in that store.  He didn’t mind the ferret but he thinks Bath and Body Works stinks?  Anyway, we found nothing in BBB, so I told him we would go to Kohl’s next…..and I didn’t tell him it has clothes.  We talked about fall, and I told him that I like this time of year and the colors of the trees.  “Yeah,” Aaron said.  “They don’t have leafs.” 

There were no rugs in Kohl’s, but Aaron found the coolest spider soap dispenser ever.  I would have hurried right by it, but not Aaron.  “Mom!!” he exclaimed loudly.  “Look at this!”  Others looked, too……sharing Aaron.

I suggested that we look inside Ross, right next door to Kohl’s, so Aaron gladly trotted along beside me…..ready to explore a new store.  It only took a second for him to see the hanging skeleton just inside the door…..and you know the rest.  We finally made it to the rug aisle, and looked at several styles and colors.  I would unfold one and look at it……put it back on the shelf and unfold another one……several times.  Aaron was about done with this silly rug business.  “Mom, you can’t make up your decision with rugs!” he said with a small measure of patience.  So I quickly made up my decision…..the one with dots, as Aaron described it, and we went to stand in the check-out line.

There were several customers in front of us on this busy Saturday.  While standing there, Aaron found a bag of gummy bears that I agreed to buy him.  He held his gummy bear bag but he was observing everything around him, as always.  At one of the counters there stood a man making his purchases…..a man with a very modern Mohawk hair cut…..and I should have seen it coming.

“Look at that guy’s hairdo!” Aaron broadcasted loudly.  The young lady in front of us turned and smiled while I smiled back, and also while I told Aaron to please try hard to whisper……but to try even harder not to comment on people…..in any way, shape, or form.  Please!  Not in ANY way, shape, or form whatsoever!  Sharing Aaron…..

We were finally driving home, rug and Aaron in tow…..and I was so thankful that either Aaron didn’t notice the other Mohawk hairdo man coming in the door as we left…..or he just decided that he would listen to Mom for a change and not comment.  Probably the former.  Anyway, as I drove Aaron said, “Mom, sometimes Brian at Paradigm does this.”  And I looked over to see Aaron comically trying to make his facial muscles move.  “And flaps his ears!” Aaron finished.   I laughed at the thought of flapping ears, which made Aaron very happy.  Sharing Aaron…..

Later that night, as I sat at my desk doing some things, I heard Aaron coming up the stairs.  Without saying a word, he plopped down several gummy bears for me.  I thanked him while determining in my mind if I should eat them, but Aaron walked away and I was saved from that decision for the moment.  But in just a minute I once again heard him coming upstairs, where he put even more gummy bears on my desk…..and walked out quickly.  Down the stairs he went…..and wouldn’t you know, soon he was headed back up.  He walked in my room again, but this time he didn’t leave me any gummy bears.  Instead he reached down and took some off my personal pile of gummies, smiled, and started out the door.

“Are those for dad?” I guessed.  And he said they were for Dad, and thumped down two sets of stairs to give his gummy gift to Dad.  Aaron sharing….

I looked down at my remaining gummy bears and saw three soft bears there on my desk calendar.  Three bears…..Aaron, Gary, and me, I thought.  How perfect! 

Gary and I, sharing life and sharing Aaron.

And Aaron, sharing with us…..more than just gummy bears.  Sharing his unique way of living, in many different ways, shapes, and forms. 

 

 

What Wasn’t and What Was and What Should Have Been


We’ve had a few interesting days with Aaron.  I think the older that Aaron becomes, the more evident his autism behaviors are.  And boy, we’ve seen some good ones recently!  I’m using “good” in a loose sense.   I’ve never been the kind of mom that tries to blame my child’s poor behavior on anything other than his willful disobedience.  “Yes, I know my child destroyed your flower bed, but he’s just tired.  He didn’t have his nap today.”  Nope, that was not me.  But with Aaron, we see more clearly with each year that his behaviors are indeed the result of something that we sometimes barely understand and can rarely control.  Of course, some things he does are very funny or amazing…..but not always.  
Take the fishing trip that wasn’t.  Rosie’s mom had told me about Fishing Without Boundaries several weeks ago, but I dismissed it as something that Aaron wouldn’t want to do.  He doesn’t like to fish…..he doesn’t like being out in the heat all day…..he doesn’t like crowds for long periods…..he doesn’t like his routine messed up.  I’m not being negative.  I just know Aaron.  But there’s one thing I didn’t take into account…..Rosie.
I was in the garden a couple weeks ago when Aaron came home from his day group.  I looked up when I heard the back door open and heard Aaron’s unmistakable, “Mom!!”  I looked up to see him marching resolutely across the yard toward the garden….and me.  “Mom!!” he repeated.  “I’m going fishing!!!”  He was so excited, and I was so surprised.  It took me awhile to figure it out, but I eventually learned that Aaron wanted to go to the Fishing Without Boundaries event at El Dorado Lake.  
Over the next couple days I talked to Aaron about the logistics of that day, including the very early morning.  I was positive and upbeat, and Aaron was determined to go on this fishing outing……..not because of his love of fishing or the lake or the great outdoors, but because Rosie would be there.  He wanted to spend this day with Rosie, doing what Rosie enjoyed.  So we filled out the form, ordered his tee shirt, and sent in the money for his big weekend.  
I saw a little crack in his armor when, a couple days before the big day, he began to worry about the very early time to meet his ride.  So I told him that we would take him to the lake and could go later in the morning with no problem.  All seemed well.  But on Friday, the day before the fishing trip, he woke up rather worried.  He told me that he wasn’t sure about the fishing…..he wasn’t sure about being gone all day……he wasn’t sure about not being home doing what he enjoys.  In other words, he had decided not to go.  I knew it for sure, but I didn’t want to give in too easily.  Yet as we talked, and I saw him getting tense, I knew I had to give him an out….or we would all pay.  So I told him that he didn’t HAVE to go fishing.  Everyone would understand.  
But the only person that Aaron worried about disappointing was Rosie.  I felt badly for him as I saw the struggle that he was having.  He wanted to be with her, but he didn’t want to leave his weekend routine.  He came so close to going, and it was really disappointing that he didn’t quite make it…..but maybe next time, although we have said that same thing for years about various trips and events to which he says a definite, “No!”
On Saturday, Aaron said, “Do you think that Rosie misses me?”  And I felt sad for him.  Then later, “Was it my fault that I didn’t go?”  I knew he was struggling with his decision.  And finally, in the evening, he said, “I feel like I betrayed Rosie.”  That one made me really feel sad, but we talked about it and I could only hope that he felt some peace about his decision.   His routine and his way of doing life is the most important thing in the world to him…..but when he has a reason, a big reason like Rosie, to interrupt his routine….it’s so tempting and he wants so much to be able to make himself comply.  Then he struggles when he just can’t do it.  And we can’t force him to go…..or take away the guilt he had about not going.
So that’s the fishing trip that wasn’t.  And then we had the friends that were…..as in, were here for a visit or to join us for supper.  But Aaron wished that they were also friends that weren’t…..as in, weren’t here for a visit or to join us for supper.  This is when his autism becomes frustrating……humbling (to Gary and me)……and oh, so embarrassing!
First came Kristi, our sweet friend that we have known for 20 years.  Kristi’s dad was our pastor when we lived in Leavenworth, and our families became good friends.  She is now a missionary in France, and is here in the states for five months of furlough.  She is in the Wichita area for awhile, and so she spent Thursday night with us.  Aaron greeted her at the car when she arrived, even carrying her heaviest suitcase upstairs to the bedroom where she stayed…..as he complained all the while that he was not her servant.
He was up and down emotionally with her for the rest of the evening.  He wanted us to watch Wheel of Fortune with him, which we did…..though we turned it on a little late.  He wanted us all to take Jackson on a walk, even handing Kristi the leash to hold.  And he walked a second time around the circle with just me and Kristi, minus the dog.  He would pop up at various times to talk to me and to Kristi, usually about a movie.  But in the midst of it all, he was also rude several times.  He informed Kristi that she was not his boss…..though she wasn’t being bossy…..or she was not his mom.  It’s like he needs to be in charge, controlling his world at home when someone else is there.  A visitor becomes an interloper…..an annoyance…..when Aaron’s schedule is disrupted.  One minute he can be chattering happily and the next he just might puff up and be very rude.  Kristi took it in stride, as our friends always do.  Gary and I are the ones who are the most affected.  Kristi understood and we talked the next day about it after Aaron was gone.  Still, it’s frustrating.  Explainable, but embarrassing.
And then there was Saturday, when I asked our elderly neighbor, Nora, to come over and have supper with us.  Nora is recently widowed, and on Saturday she found out that an assisted living apartment will be opening in one month.  She is overwhelmed with moving.  I felt like she needed company that evening…..some food and talking and laughter.  But there was Aaron, who for some reason has decided that he doesn’t like little Nora.  And he especially decided that he didn’t like Nora coming to our house for supper on this Saturday evening.
Thankfully, Nora can’t hear very well so she didn’t comprehend all of Aaron’s muttered comments.  But she heard enough to know that he was displeased with her being there.  One thing led to another, and by the time we sat down to watch Wheel of Fortune (of course!), Aaron had had enough.  It was not a pleasant scene as he fought over keeping the remote, paced the floor like a wild animal, and was very verbal.  Finally, he yelled at Nora with all his might and stormed outside…..where he sat in the mulch to wind down.  He sat under the pecan tree, where he never sits, but where he was more hidden and farther from the house…..and from his problems. 
Again, our friend understood…..but I knew she was hurt.  We were hurt…..and terribly embarrassed.  It was the worst display of anger toward a visitor that we had ever seen.  Aaron came in and out of the house, even watching the last few minutes of Wheel of Fortune from the kitchen, standing there gazing at the television but not talking to us.  When I walked Nora home, Aaron sat under the pecan tree still breaking mulch…..and glaring silently at me when I walked past him to go home.  Later that night, we were able to talk to Aaron about friendships…..about how to treat our friends…..about how we treat his friends.  I think we made some headway as we compared our friends to his special Rosie, and the importance of being polite and kind.  What if we were mean to Rosie, we asked?  That thought seemed to register with him.
But who knows what will happen when Aaron is once again pulled from his routine?  We might see when Kristi comes back this Thursday night, brave soul that she is.  Aaron wants everything to stay the same in his world, and he will react strongly to whatever disrupts that sameness…..whether it be an event or a person.  Aaron doesn’t care if he hurts with his words.  He just wants his life to be the way he likes it.  I can say that he is selfish, rude, inappropriate…..lots of undesirable traits…..but I can also say with confidence that he is autistic and that we see it more clearly with every passing year.  What registers with our brains does not register with his.  What we can control, he cannot.  If he fell down into a seizure, we would be so empathetic.  But when he falls into an emotional meltdown, empathy becomes anger and embarrassment.  Yet both scenarios are an evidence of his disability……and a struggle for us to always understand and handle correctly.
And I realize that I will always be that mom……THAT mom……who tries to explain his behaviors while wondering if I’m sounding like I’m trying to excuse them.  There’s a huge difference there in the two.  Explaining means we grasp at understanding.  Excusing means we dismiss with no repercussions.  But in explaining I feel that we sound like we we’re excusing.  It gets complicated.
So this morning Aaron got up very early for him.  He came up the hall and into the room where I was having my quiet time.  He just stood there behind my chair, looking at me, so I said, “Aaron, you need to go back to bed.  It’s just 6:00.”
“6:11,” he said with no emotion.
And another day with Aaron has begun, as I smile…..and see what the day will hold.