Category: Adult Autism

A Day With Aaron and Rosa

I have written often in the past about Aaron and his special friend, Rosa.  Aaron called her Rosie for the longest time, and that’s what I still find myself calling her now.  They have a very sweet friendship.  Aaron has struggled with whether they are boyfriend/girlfriend, but both we and Rosa’s parents encourage friendship and nothing more.  In other words, we don’t push them toward a relationship that might open doors that we don’t want to open at this point……and probably never.  Aaron and Rosa are very happy with things the way they are.  Their happiness warms our hearts.

Rosa has had a change in her day and residential services, so now she and Aaron don’t see each other at all.  At first, they both seemed to be handling this change far better than we had feared they would.  Over the weeks, though, they have shown signs of missing each other a lot. 

“It scares me that Rosa and I aren’t friends anymore,” Aaron told me one day.  I assured him that they were indeed still friends, but to Aaron it was hard to figure that out since he didn’t see her anymore.  I felt so badly for him as I tried to explain things once again.

“Rosa left me,” he said on another day.  He said the words flatly one day, without any drama, which only seemed to increase their depth.  I knew he was missing her a lot.

“I miss Rosa,” he mentioned on another day.  “It seems I can’t be with anyone to tease anymore and to talk like we used to do.”  So I mentioned some of his other friends, but he only said, “They don’t tease like Rosa.”  And some of it isn’t that Rosa would tease Aaron so much, but that Rosa understood Aaron’s teasing.  And where sometimes Aaron’s teasing goes too far, and might involve a hearty whack on the back or the rear, he never to our knowledge went that far with Rosa.  He even admitted to us that he wouldn’t treat Rosa like he did others. 

Another issue also presented itself shortly after Rosa’s absence.  Another female client decided that it was time to take advantage of this opportunity and to see if she could talk Aaron into being her boyfriend.  This didn’t go over well with Aaron at all.  He was a combination of angry and confused as he tried to ignore her repeated offers of a relationship now that Rosa was gone. 

“______’s eyes looked like she loved me,” agitated Aaron told us one day.  Now how perceptive is that?! 

“Stephanie and Shauna don’t say they love me,” he said on another day.  “That’s good to me, Mom.”  He knew that those two friends were just that…..good friends…..and that they had no designs on Aaron’s affections other than friendship. 

Well, over time I think we’ve worked out the situation with his friend who wants to be more than a friend.  The staff at Paradigm stepped in to intervene, and I haven’t heard any more from Aaron concerning her proposals or her loving eyes. 

Louise, Rosa’s mother, called one night this past week and told me how much Rosa is missing Aaron.  We decided to meet for another movie day this past Saturday, with pizza to follow at our house.  When I told Aaron, his eyes lit up.  I asked him if he wanted to go to a movie with Rosa and then have pizza, and he answered with a resounding, “YEAH!!”  He agreed to see the new Cinderella movie, and decided not to go watch it with Paradigm on Friday since he would see it with Rosa on Saturday.

I told Aaron exactly what time on Saturday we would be leaving when he asked me that question on Friday night.  And then I repeated it several times on Saturday morning.  The EXACT time was, as always, of utmost importance to Aaron.  He was watching his Egyptian movie, Sands of Oblivion, when I told him it was time to leave for the theater. 

We walked into the theater lobby and saw Louise sitting with Rosa on a bench.  Aaron marched right over and said, “Lou-ees!”  That’s how he pronounces her name….with a French or Italian spin to it…..and it’s quite hilarious.  “Lou-ees!” he said.  “Do you know Im-La-Rah from Sands of Oblivion?!” 

I laughed, and Aaron waited for Lou-ees’s answer while Rosa sat there juggling her colored pencils that she was holding.  Louise answered his question by telling him that she didn’t know Im-La-Rah…..and she answered like this was perfectly natural.  She reacted like only someone who understands Aaron and others like Aaron would react. 

And you know what?  Aaron and Rosa didn’t say ONE word to each other.  Aaron didn’t say hello to her as we hurried into the theater, and she didn’t say hello to Aaron.  They don’t do that.  And they’re happy as can be with it.  They were together and that’s all that mattered to them.  They don’t and won’t show their happiness or exhibit their feelings like you and I would do.  Aaron sat on the edge of his seat, talking nonstop, and Rosa was also talking…..but they weren’t talking to each other.  Rosa was busy with her colored pencils, and Lou-ees was drawing pictures for Rosa the way she enjoys, and Aaron was talking a mile a minute about anything and everything while Rosa interjected her comments to me or Louise.
 

I moved over to sit next to Aaron during the movie, for damage control.  It was a good thing I did.  Cinderella wasn’t his favorite movie.  As he told me later that night, “Cinderella is a girl show.”  But he wanted to see the movie that Rosa wanted to see, and when he told me that, I was just filled with warm fuzzies.  But because it wasn’t his favorite movie, he was pretty restless, so that’s where the damage control came in.  Aaron, don’t stretch with your arms in the air…..don’t kick the seats in front of you…..don’t yawn so dramatically…..quit saying loudly, “I know this story!”…….and please don’t say “Sexy!” when they kiss!!

I won’t even dwell on our foray into Little Caesar’s to get pizza.  Let’s just say that Aaron was large and in charge, bursting in the door of the very small, crowded lobby and telling the clerk, “I want two pepperoni!!” the moment that we entered.  It was a whirlwind and we left our mark, that’s for sure, on employees and other customers alike.  Louise and I just laughed as we exited.    

Back at our house, we ate pizza on our patio and talked lots more.  Rosa asked Louise to tell us this and that, and Aaron was his usual verbal self….in a good way, thankfully.  After we ate, he brought out his bag of Skittles to share.  And he gave Rosa a brand new container of Pringles, his favorite flavor…..not a flavor he didn’t like, such as he gave to Andrea one day.  Plus he gave Rosa a piece of his very favorite Swiss Cheese for her to take home and eat later.  We took a little walk around the yard, Aaron still talking and Rosa still holding her colored pencils.

 
We waved goodbye as Rosa and Lou-ees drove away, with talk of getting together again still fresh in Aaron’s mind.  I don’t know that he and Rosa said goodbye, either, any more than they said hello.  I was focused on Aaron being quiet long enough for someone else to say a word or two.  The rest of the evening, Aaron followed me around as I worked on laundry and other chores.  He was happy and he was full of talk, of course.  He told Gary all about the day, too, several times.  Trust me.

Before she died, Cinderella’s mother told Cinderella to be kind and to have courage.  Kindness is something we don’t always see in Aaron, although he exhibits it more than ever as he’s aged.  But toward Rosa, we do see Aaron showing that kindness.  And she shows him the same.  It’s so sweet and wonderful to see them that way together.  Relaxed and happy, even though they don’t always demonstrate their closeness to each other in the way that you and I would do. 

Lou-ees and I will hopefully do this again soon.  I guess we’re the ones with the courage…..and I laugh as I say that.  We’re also the ones with joy in our hearts as we give our special adult children a special day together.  Having them is a responsibility that won’t go away at a certain age like it has with our other adult children. 

But with that responsibility comes blessing…..some days hard to find……but on other days, like Saturday, all around us for the enjoyment. 

My Note From Aaron

Is it 12:08…..
Ah, the time change of this past weekend has come to bite us.  We knew it would be difficult for Aaron to accept this change.  It nearly always is.  He doesn’t mind it so much when we turn the clock back one hour, but this forward one hour business is not his cup of tea. 
….or 1:08?!

“What??!!” he exclaimed on Saturday during supper when we broke the time change news to him.  No matter how much I tried to make it seem like it wasn’t a big deal, it still was a big deal to Aaron.  It was an even bigger deal at bedtime.

“Mom!!  Come on!  I need to say goodnight!  It’s not really 10:00, it’s 11:00!  Come on!  It’s late!!” 

“I don’t think I’m gonna read tonight.  It’s late!  It’s already after 11:00!!  I’m just going to sleep!  Do you think that’s a good idea?” 

I told him it was a very good idea.  And I wish that this morning had held some good ideas for getting him over the Monday time change hump, but good ideas were few and far between this morning.  Add in the fact that Aaron didn’t go to his day group on Friday because of his meltdown on Thursday….and today was his first day back since that incident……and add in that I overslept today….and Aaron wouldn’t wake up today…..not a good morning.

He woke up grouchy.  I had to keep speaking to him in order to wake him up, and my voice first thing on this kind of morning is not what he wanted to hear.  Not even his mugs of coffee sitting beside his desk helped on this morning.  Not even all the advice I’ve read, been given, or given out myself helped this morning.  Aaron was grouchy to the bone.

This Kansas City Chiefs doll that Aaron gave me a couple years ago pretty much matched both my face and Aaron’s face as I drove him to meet his group. 

 
But when we pulled up beside the Paradigm van, Aaron opened his door….and then closed it again, refusing to budge.  I wasn’t going to fight it, so I apologized to his driver and headed home again with Aaron.  I was deep down really irritated.  Totally mad, actually.  I had some strong words with Aaron as we drove home, and I wasn’t all cheery even when he apologized. 

Straight upstairs we both went, Aaron to his room and me to my bedroom.  It wasn’t long before I heard Aaron’s steps coming up the hall.  He walked in my room and handed me something.  It was a note that he had just quickly written.

 
Oh my goodness!  How could I stay mad after I read this note?  I am “preety?”  And I am “sweat?”  I took a shower this morning!  HaHa! 

And along with the “I love her,” Aaron quickly and sincerely gave me a huge hug.  Any hugs from Aaron are rare and welcomed, but a huge hug is definitely a special treat. 

Of course, my heart melted, even as I knew that Aaron might be yelling at me again tonight.  But at that moment, Aaron was feeling terrible about not going to Paradigm, so he jumped at my offer to drive him there on my way to run my errands. 

“Mom,” he said as he put his jacket back on.  “I just thought I could write that note and make you happy to me, not rude like you were in the van.”

I was rude?  But I didn’t want to argue and I didn’t want to take away from this special moment, so I just smiled and the two of us went on our way after picking out a new oldies CD to listen to during our drive.  I was happy to him all the way there, and he was happy back to me.

He gave Barb at Paradigm a huge hug, too, and she and I talked awhile about the complexity of Aaron.  How do we find what will make him calm….make him motivated…..make him polite to others?  There are no easy answers, and there never have been.  She showed me her latest notes from Aaron on her desk calendar.  Notes like mine from today.  Notes that we see and read, especially on Aaron’s grouchy days, to remind us that there is a side of Aaron that wants to be sweet and kind. 

I’ll keep Aaron’s note on my desk, where I can see it, but where he can see it as well.  I want him to realize that kindness from him is a quality that is worth holding onto and remembering. 

I’m not sure yet if I’ll also try to clear up that “sweat” comment, or just take it that he meant I am sweet.  Maybe I don’t want to know. 

 

 

Still Our Sweetie Poo

I got one of those phone calls yesterday that I don’t like to receive.  It was Barb, from Paradigm, trying to tell me about an incident with Aaron.  It was hard to hear her, though, because she put it on speaker and I could hear Aaron in the background.  He was yelling as he tried to explain his story, and he was crying, and no one had to tell me that he had just had a meltdown.  My heart sank.  It’s been awhile since we’ve seen this with Aaron.  I felt drained when I got off the phone, and I wasn’t even there when Aaron lost it.  It’s just very discouraging to feel like things are going along so well, and then BAM, he hits that wall again. 

In his frustration, he broke his watch and he broke his brand new two day old glasses.  This is very typical of Aaron when he gets that upset.  He will break something that’s important to him, and then afterwards he’s just eaten up with remorse.  The remorse comes from all of his behaviors when he loses his temper, but he knows that breaking things comes with repercussions.  He won’t get a new watch right away.  He didn’t know if his new glasses could be fixed. 
 

The repercussions with people’s hearts is an area that he is not quiet adept at understanding.  He’s doing better with empathy as he’s gotten older, but he is usually very narcissistic and only thinks of himself when he is in a rage.  I guess many of us are that way when our emotions take control, but Aaron is often that way even when he is even keeled.  Thinking of others and what they are feeling has been long in coming for Aaron’s autistic mind.  He’s getting there, very slowly, sometimes more than others.  For instance, not long ago he found out that Andrea had a migraine.  The day that she and I were talking on the phone and she mentioned it, Aaron was frustrated that our phone call was taking my time away from him.  I chided him when I got off the phone about how uncaring he seemed.   The next day when she called, he said to me, “Tell Andrea I cared for her migraine!”  He was very pleased with himself that he cared, because even he knows how hard it is for him to feel that emotion, and because he felt guilty that he had not felt it at first for his sister.

He came home yesterday, face and eyes all red from crying.  He told me what had happened, so we discussed it as much as I felt that he could handle.  He lets me know when he has had enough.  Barb and I talked privately when Aaron was up in his room, and Melinda and I texted.  I felt like I had a good grasp of what had happened, although part of it was still fuzzy.  That’s why I tried to talk to Aaron again after Wheel of Fortune was over, but he did not want to talk about it further.  The book was closed, in his mind. 

I was almost asleep last night, at 11:30, when I heard our monitor on the nightstand beeping.  It meant that Aaron had turned his unit off in his room.  And it wasn’t long before our bedroom door opened and Aaron strode in to tell me that he had turned his monitor off and he had no intention of turning it back on.  There!

“Oh boy,” I thought.  “Here we go.”

Aaron has these residual effects from his behaviors…..effects that show up hours after the incident is over and hours after we have talked about it.  I followed him to his room, noticing his agitation.  He turned and told me that I was mean, that Dad was nicer, etc., etc.  I knew that my second conversation with Aaron was the cause of this, but I couldn’t take it back.  He thought I didn’t believe his version of the story….that I would make him leave Paradigm……and on and on.  And he assured me once again that he was NOT turning on his monitor.  That was the biggest sign of his rebellion that he could come up with at the moment. 

I left his room frustrated, and Aaron was frustrated, and the monitor stayed off all night.  This morning, I left Aaron alone when he got up.  Even when he stood staring at me silently, I did not speak to him.  I poured his coffee and carried it upstairs.  I got myself ready and I opened my bedroom door, and finally he walked in and told me that he was not going to Paradigm today.  I knew that was coming, so I asked him if he would go on Monday and he gave an exuberant yes. 

So many of my decisions at these times are uncertain.  Is it right to not make him go today to his group?  Do I still get him his Friday goody bag?   Was this outburst because of his new seizure drug….the one that can cause anger?  Do I take him off this drug?  Or do I wait awhile longer to give it more time? 

Well, I didn’t make Aaron go to Paradigm.  I know this is his typical response to such stressful situations, and I know that he does need time to emotionally recover and to sort it all out in his head.  His big, impulsive hug for me later showed me how thankful he was that I let him have some time and space today.  I still don’t know about the new seizure drug and what to do there, but I think I’ll give it some more time.  I think.  I did not get him his Friday goody bag.  He hasn’t even asked about it because he knows that he really messed up.  My mother heart wants to take care of him…..to blame the autism….to quote the professionals about his emotional deficits.  But I know he also needs consequences, and so the goody bag will not happen today.

I did take his glasses to the optometry shop.  “Wow!” the technician said.  “He sure did a number on them.”  I didn’t have Aaron with me because I wanted to explain what had happened, but not in front of Aaron. 

“Yes,” I agreed.  And I wanted to add, “You should see the number he’s done on my heart, and on the hearts of others.”  But of course I didn’t say that. 

By some miracle, the young man brought Aaron’s glasses back to me later, all fixed and ready for Aaron to wear again.  I wish it would be as easy to fix the situation of yesterday, but that will take more time. 

Later, Aaron and I took Jackson for a walk around our neighborhood circle.  It’s a beautiful day, perfect for a walk.  When we got home, Aaron quickly grabbed his mulch bucket and situated himself out in the flower bed for some mulch time.  He stayed there for nearly an hour, relaxing and sorting out his thoughts with each little piece of mulch that he broke.  It’s time that he needed…..quiet, peaceful, reflective time for him. 
 

Wouldn’t it be wonderful if mulch would cure autism?  Or if mulch time would give me all the patience and wisdom that I need?  I would say, “Scoot over, Aaron!  Make room for me!  Will you share your bucket?”

I know every parent of autistic children can understand how helpless I sometimes feel.  How embarrassed at my son’s behavior.  How frustrated and then sad at his response. 

Then I think of Barb, who loves Aaron and who said, “Tomorrow’s a new day.  We’ll just put this behind us and go forward.”

And Melinda, who also loves Aaron, and who said, “Aaron informed me that I am NOT his sweetie poo anymore!  Well, he is still my sweetie poo.”

That makes me smile, and it makes me thankful for those that work with Aaron and love him even on the bad days.

We will, and we do, move forward.  Today Aaron said, “Mom, I’ll turn my monitor on tonight.”  It’s his way of telling me that he’s better now, and that he is ok with me…..mean old Mom of last night. 

Yep, it’s a new day and we will go forward.  And I just hope Aaron knows how many people cared for him when he messed up.

He’s still our sweetie poo!

 

 

I’m Glad You Took Care of Me

Aaron had two doctor appointments this week.  On Tuesday we went in for his yearly eye exam, and on Thursday we went to the dentist to have his teeth cleaned.  He very much prefers the eye exam.  For one thing, nothing hampers him from talking to his heart’s content at the optometry clinic.  No one has their hands in his mouth, doing uncomfortable procedures, and so he can talk and talk…..which he definitely did.  He charged right up to the check-in counter at the eye clinic and didn’t even say hello before he started telling the two receptionists all about Fallen Skies and alien skitters and the skitter-in-charge, named Cochise.

It’s just amazing how Aaron will launch right into his tall tales without one word of hello or a few words of explanation to get him started.  Nope, he just barrels right in to his review of whatever is currently on his mind, oblivious to the confused looks of those to whom he is talking.  Or he’ll mention his day group, Paradigm, or someone at Paradigm, as if these ladies know all about this place and those people……which they don’t, and so once again they are confused.  This is why one of my job descriptions is that of interpreter.  I definitely multi-task big time as I try to sign forms, go over insurance, check for information changes, and explain skitters. 

Thankfully these ladies were delighted with Aaron.  Their give and take with him only encouraged him to continue with his stories, and I had to urge him to finally hush and follow me to a chair.  His forced silence was short lived.  He was immediately called back to begin the exam, so he hardly missed a beat before he was telling a new person about Falling Skies and skitters and that he broke his glasses the week before.  He made me laugh as he did one of the eye tests, putting his hands up to the machine as if he was gazing at something exciting.  Maybe he thought he would see another skitter? 

 
The eye exam went well with patient Dr. Fisher……our friend, Brandon.  Of course, Aaron just had to tell him that he got in trouble for calling Stephanie a babe at Paradigm.  And there I was, proud Mom, wondering if I should explain.    Then it was on to get his new glasses.  Trying on glasses is Aaron’s least favorite part of this process.  It ranks right up there with trying on clothes.  He just doesn’t want frames that make him look like Clark Kent.  After that fact is established, he could care less.  And going over insurance is really boring to him.  Again, two understanding technicians and lots of laughs helped tremendously.  Soon we were eating lunch at Chili’s and all was great in Aaron’s world.

Thursday was teeth cleaning day.  The dental exam is really, really Aaron’s least favorite thing in the world to do.  Most of us don’t like teeth cleanings, and Aaron is no exception.  It’s uncomfortable for Aaron, plus he can’t talk and so it’s a long process of frustrating scraping and rinsing and forced silence.  I used to go back with him, but now I let him go alone.  I urge him to be mature…..plus it’s best for me to have an element of ignorance about what really goes on back there, on Aaron’s part.  I know he gets frustrated and impatient.  Once he bit the hygienist.  He said it was an accident.  I wasn’t totally convinced. 

Another part of it is that Aaron doesn’t want us to talk about how he doesn’t do a good job with brushing his teeth.  That’s why we have gone every four months for cleaning, and now have decided to go every two months.  Aaron starts getting angry if I talk about his teeth at home, if I try to help him at home, or when the dentist or hygienist is talking to me about Aaron’s teeth.  We try to keep it low key but with instruction for him, too, yet nothing really helps. 

Later, as he took full advantage of the Pizza Hut buffet, we mentioned his teeth just a little.  Most of the time we talked about whatever entered his mind as he thoroughly enjoyed the pizza and the salad.  I laughed at the dressing on his nose and the look on his face, and I had to tell him many times to talk softer as he was talking in high gear once again, like he was making up for the lost moments when his mouth was silent at the dentist’s office. 

 
We went to Sam’s for a few things.  On the way home we stopped at my elderly friend’s apartment.  Aaron hadn’t seen Nora’s new place.  I dropped off a sweater to her that I had repaired.  She was delighted to see Aaron.  Once again I was the interpreter as he told her about skitters and Paradigm this and that, and she stood there clueless.  She gave him a piece of candy, and he thanked her.  “Are you glad I said thank you?” he asked me as we left.  “Are you glad I told her hi?”  I told her that I was very thankful that he had practiced his manners.

Manners were a little absent later that night, however.  A lot absent, actually.  Like a light switching off….or on…..Aaron’s mood changed dramatically.  We haven’t seen that kind of change in a long time.  He instantly went from happy to angry as he prepared to go to bed.  He decided to focus on his teeth. 

“Mom, you make me feel like I’m bad in my mouth!  I’m not going back to them!!”

He slammed our bedroom door, and he slammed his bedroom door.  Then I heard him stomping up the hall, where he barged in our room yet again.  “I’m not going back to them!” he angrily said….referring to the dentist.  And he called me a name, several times.  This was surprising because Aaron has been so mellow lately.  I wondered if this foul mood was related to his new seizure drug, which can cause anger.  Or was he going to have some seizures.  Often, mood changes precede seizures. 

And sure enough, he had two hard seizures during the night, and another one yesterday morning as he lay on the couch.  He chewed the end of his tongue again, and wet the bed.  I wondered what he thought as he silently watched me yesterday morning in his bathroom, on my knees cleaning up the pee that was on the floor around the toilet.  He was unsteady when he got up and he told me this had happened. 

I thought about his anger the night before, and the name he had called me.  It would be easy sometimes to show anger right back to him, and I certainly have done that.  But that night before I had remained mostly silent, knowing that it was futile to reason with Aaron when he was so angry.  Now before our issue was resolved, I was on my knees cleaning up his mess…..because I love him.

Just like God loves me, I thought.  Here, once again, in my life with Aaron I have another example of God’s love for me, expressed unconditionally.  God loves me when I’m happy…..He loves me when I’m angry……and he cleans up my messes and he soothes my heart over and over again.  How can I do less with Aaron?

I washed all of Aaron’s bedding during the day as he slept on the couch, and was reminded again of God’s love for me as I love Aaron.  I’ll be doing this again, too, and so will God with me.  Faithful love is what God shows to me, and is what I need for Aaron, as well…..even with the still fresh reminder of Aaron’s anger the night before. 

Last night, when Aaron could no longer keep his eyes open, I helped him get in bed.  His covers were all clean and fresh.  He was ready to get in bed when he remembered that he needed to fill out his notebook.  He had written the time that he got up that morning, so now he wrote the time that he went to bed.  It was 9:52.  Then he asked me to put his snake and his skunk in the bed.  I laid Mr. Snake under the covers and Aaron stood there staring at him.  Then he told me to scoot him over a little, which I did.  Aaron stared again.  And I had to move Mr. Snake once more until he was finally in just the right place.  Then the skunk went in the bed, just right, and finally Aaron got slowly under the covers.

He gave a huge smile as he felt the weight and the warmth of the covers on his tired body.  We hugged and Aaron smiled again.  Then he laughed, and I asked him why. 

“I told Dad I’m glad you took care of me when I had a seizure,” he slowly said. 

All thoughts of anger and name calling vanished at that moment.  I was thankful for the privilege I have to take care of Aaron, and I told him that.  He smiled again as I pulled the covers up until just his smiling face was showing.  I turned off his light, and I closed his door…..and I thought of what a difference a day can make. 

What a difference knowing God makes, too.  I’m glad God takes care of me so that I can take care of Aaron.  And I’m glad that He continues to use Aaron in my life to teach me so many things about Himself. 

Everybody Breaks Things

Have I told you that Aaron doesn’t like for his world to be upset?  Yeah, I knew I had.  And I’ve also told you that when Aaron’s world is upset, Gary and I usually end up in the turmoil as well.  We were reminded of that fact last night, once again.

Yesterday was a fun day for Aaron.  He and I went to see Night at the Museum while Gary took care of some work around the house.  Aaron and I shared popcorn, which of course we couldn’t start eating until the movie had actually started. 

“Now, Aaron?” I asked as we sat down.

“No,” he answered.

“Now?” I asked again as the screen was showing all sorts of things to keep us entertained before the movie started.

“No,” he patiently repeated.

“Now?” I asked when the trailers began.

“No,” he said once more.  “Not until the movie STARTS!”

So when the movie started, he said, “Now!”  And I reached down for our bucket of popcorn, feeling like I was beginning a race.  Which it kind of was as Aaron ate fast and furiously, determined not to let me cheat him out of his fair share of popcorn with extra butter.  I had already confiscated most of his HUGE stash of napkins he managed to grab while I wasn’t looking, but he was NOT going to let me do the same with his popcorn!

After the movie, we ate a very unhealthy supper at Burger King…..but Aaron loved every bite, and I tried to eat mine without too much guilt.  We came home and watched Wheel of Fortune.  It was a nice day, full of Aaron’s favorites.  He went to bed happy, and ready to read a little in his Handy Answer Gardening Book.  He could care less about gardening and plants but it’s the next book in his order of books and so he MUST read it…..and he is…..Every. Single. Word.

We said our goodnights and Aaron finally settled in to read, after following me a couple times to my room.  Finally I was alone and able to start my bedtime routine.  Gary was still downstairs.  After some time, my door burst open and in stormed Aaron.  I was beginning my routine lecture about knocking before he enters when I looked up and saw his face.

His face looked flushed, and his eyes were wild.  He was breathless as he said, “Mom!  You have to come here!  I need you to see something!!”

I could tell that whatever the something was, I had better go see it now.  It didn’t matter about being tired and wanting to go to bed.  Aaron was desperate, and I could not imagine what was wrong.

He hurried up the hall to his room, with me following….full of dread.  We walked in his room and there it was.  Aaron had done something to his desk drawer.  His explanation wasn’t quite clear, but whatever he had done, the large center drawer to his new desk had broken.  All the items that were in the drawer were on the floor, as well as the drawer bottom and the front of the drawer with the handle. 

He was very, very upset…..a combination of wondering if he was in trouble to just being sick that his new desk was now broken.  He kept saying he was sorry, and saying he was scared, and trying to decide what to do, and if the desk could be fixed….and I’m sorry, I’m sorry, I’m sorry.  I felt very sorry for HIM, after the shock of what had happened quickly passed.  Gary came upstairs then, and we both assured Aaron that it was fine and that we would look at it tomorrow. 

Finally we were all in bed.  We hoped that Aaron would sleep.  He was so upset and agitated by what had happened.  Gary and I lay there, trying to go to sleep, when through the baby monitor we heard Aaron softly say, “I’m scared.”  I wanted to run in his room and assure him that it was OK, but I knew I needed to stay put and try to let him calm down.

After a few minutes, he spoke softly again.  “I should listen,” he said.  Oh dear!  I felt so bad.  How many times have I told him that he should listen when we tell him something?  Now he was saying those words as he lay there all alone, his mangled desk drawer a reminder of how he doesn’t listen.  Gary could read me even in the dark.  He told me that Aaron was all right.  I wanted to believe that.

Later, before Aaron went to sleep, he said something about a nightmare.  And I just prayed that Aaron would soon go to sleep, which he did, and finally Gary and I did, too. 

I heard Aaron stirring early this morning.  Once again, he spoke, saying something again about a nightmare.  When I got up soon after, I saw Aaron’s light on and so I went in his room.  He was sitting there at his computer, headphones on, with his feet trying to rest on the floor without touching any of the mess that was there from the broken drawer.  I patted his shoulder, and smiled at him as he looked at me.

He and I then picked up the items on the floor and put them in a plastic crate that was in his closet.  I placed the crate on his bed, and went on downstairs.  Soon Aaron followed, and in his arms he had the crate full of his stuff.  He set it on the kitchen table.  And I noticed how awful he looked.  His eyes were so tired.  He looked as if he had hardly slept.  All of this stress over a broken desk drawer!
 

As the morning wore on, he seemed a little better.  He clipped the few coupons that were in the paper, drank his coffee, and showered.  I carried his box of desk items back up to his room.  After his shower, he came back downstairs.  In his arms was the crate full of his desk stuff again, which he put back on the kitchen table. 

 
“You don’t want that in your room, do you?” I asked him.  He solemnly said no, so I left the crate there, knowing it wasn’t worth upsetting him further.  Gary told him that he thought he could fix the desk drawer, and I could see Aaron relax some.  Then I remembered something!

“Aaron, come look at something,” I told him.  He followed me into the guest room, where I showed him something that was laying on the bed.  It was the very nice frame from the beautiful framed piece that Megan, Andrew’s girlfriend, had given us for Christmas.  The frame I had broken one day, by accident…..but broken none the less.  I felt so horrible the day I broke that frame, but now I was almost thankful for it because I could use it to show Aaron that he wasn’t alone in how he felt.  He wasn’t alone in HIS brokenness.  So that’s what I told him.  I told him how I broke the frame and of how awful I felt about it.

“So everybody breaks things,” he quietly stated.

“Yes, we do,” I assured him.  “We all break things.”

And with that, Aaron was ok.  He went back to bed and slept for a couple hours, waking up fresh and happy once again, and with no talk of broken desk drawers or mess on the floor. 

He knows that Dad will try to fix the drawer…..and if anyone can fix the drawer, Dad can! 

And he knows that Mom recently broke something very special, and though Mom felt terrible about it, she was all right…..and he would be all right, too.

But most of all, Aaron knew that he was not alone and that he was forgiven.  And in that companionship and forgiveness, the world was right once more. 

Not just for Aaron, either.  It worked both ways, for Gary and me as well.  We share Aaron’s turmoil, yes, but we share the joy, too. 

Have I told you it works that way?  I’m sure I have. 

 

 

Wanting Aaron to Do Things….Or NOT!

We’ve been dealing with an issue concerning Aaron and another client at Paradigm that reminds me of the saying, “What goes around, comes around.”  Aaron and this client have a history.  When I found out that A. was at Paradigm, in fact, I became very worried…..and for good reason.  Briefly, their history is that when Aaron was a new student in a school here, A. was the one assigned to help Aaron adjust.  A. was very bossy, and Aaron just doesn’t do bossy.  He became very frustrated as the day wore on, and soon he began flicking A. with his finger.  His stinging little finger flicks became quite an issue, and so that afternoon I got a call from the school saying that they would have to charge Aaron with assault if he didn’t stop.

Wow!  So that night Gary and I told Aaron over and over not to touch A.  We preached no touching during dinner, during Skip-Bo, during the bedtime routine, and again the following morning until the moment Aaron got on the bus.  I worried all day, but I considered the fact that no phone call from the school was a good sign that Aaron had obeyed our repeated directives.  That evening, as we ate supper, I finally asked Aaron if he had touched A. 

“No,” he said.  He paused.  “But I hit her with my notebook.”

It makes for a funny story, even then, but it was such a tangible example to us of just how literal Aaron is.  Also, it showed us that we were in for a long school year.  We were right about that!  And now A. is a client at Paradigm.  When I first heard that she was there and I figured out that she was THAT A., I knew we were in for some rough waters.  And by the way, if I told Aaron that we were in for rough waters, he would wonder what on earth water has to do with him and A.

So, yes, Gary and I have found ourselves in the position of doing damage control over the past year or so that A. joined Paradigm. She and Aaron seemed to pick up right where they left off.  Even if they are just teasing each other, the situation often ends up with one of them getting upset.  Aaron doesn’t upset easily when it comes to his version of teasing, so I have to say that it’s probably A. who is frustrated most often.  Both of them dish it out, but I think Aaron takes it better than A.  But Aaron’s teasing can be so annoying, so loud, and so inappropriate, that we can understand A’s frustration.  Yet A. often starts the ball rolling, so we are in quite the dilemma.

We’ve told Aaron to just not tease…..totally quit teasing, especially teasing A.  However, almost everything Aaron does he defines as teasing.  If we want Aaron to totally quit teasing, he must either have no human contact or be in a coma.  We have tried to redefine the word “teasing”……we have tried to explain true teasing……we have tried to exemplify proper fun teasing…..but nothing really works with Aaron.

Autism is so complex.  The effects of Aaron’s way of thinking are also very sad.  Barb, a manager at Paradigm and a special person in Aaron’s life, told me yesterday how sad it was to watch Aaron trying to fit in.  We see it at home all the time, especially when the whole family is together.  I wrote about his breakdown at Christmas.  Aaron so wants to be a part of a group, but his attempts often result in deep frustration for him because his attempts fall short of what is usually acceptable.  We, too, are so embarrassed or upset by his actions that we often have a difficult time stepping back and seeing what the real issues are according to Aaron’s way of processing. 

For instance, you don’t whack someone hard on the back in order to get their attention or to express your discomfort…..but Aaron does.  You don’t pinch a person’s arm, either.  Or interrupt other’s conversations by saying, “HEY!!”  Or saying, “MOM!!”  Over and over.  And then talk about aliens or Godzilla or why the Phantom of the Opera wears a mask.  At Paradigm, you throw in the fact that many of the other clients also have social challenges and sometimes the atmosphere becomes volatile. 

Like trying to mix A. and Aaron. 

A’s mother has expressed some concern to Paradigm.  I don’t blame her.  That’s why, after Aaron told me last week that he gave A. a resounding whack on her rear, I told Aaron that he should prepare for her parents to be very upset.  I told him that one day her parents were going to put their foot down.  Period.

Yesterday there was a conversation at Paradigm about the A. and Aaron situation, and this intervening individual said that Aaron was not to be around A. anymore.  Or something to that effect.  The Paradigm staff handled it well, standing up for Aaron, but I knew nothing of all this when Aaron came home.  Aaron thought it was A’s mom who had given this ultimatum, but it wasn’t. 

I talked to Aaron as I prepared supper, telling him that he was seeing the results of his actions…..results we had told him about, especially last week.  I was opening some cans as Aaron stood beside me, listening.  I hoped he was taking this to heart and learning a lesson.  For a few seconds there was a pause in my lecture, and Aaron stood there.  Finally he spoke.

“So A’s parents put down their foot,” he said.

How I wanted to laugh! 

“Yes, Aaron, they put down their foot,” I replied instead.

Aaron stared at me for a few more seconds as the can opener whirred.

“What does that mean?” he finally asked.

And I realized once again that if I want to help Aaron, I must come to his level.  He had no idea what it meant to “put down their foot.”  Silly me!  All this time I thought I had made such a good point, but Aaron was just wondering why A’s parents would “put down their foot.”  What was that all about?

Just as he has no idea, strange as it seems, how to always effectively and appropriately interact with the people in his world.  He wants to….he tries…..but he just doesn’t always get it and he isn’t always able to control the impulses that usually control him. 

Aaron didn’t want to go to Paradigm this morning, which is his way of handling tough and embarrassing situations in his life.  However, we know that Aaron can’t be allowed, if at all possible, to retreat from life.  So I gently told him that he was going, several times during our morning…..even up to the point that we were in the van at Quik Trip to meet his ride. 

His driver was filling up with gas, so I tried to get Aaron to just get out and walk over to the Paradigm van there at the pumps.  Nope.  Aaron wanted to do it the way he always does, waiting for Lisa to pull up beside us.  When I mentioned my idea to Aaron, in fact, he had a very insightful comment.

“Everyone always wants me to do things!” he replied.

Yes, we do.  We have good reasons, too, and the best of intentions for Aaron.  But he sees our ideas as very annoying, most of the time, and also nearly impossible.  I guess rather than “put down my foot,” I should try harder to put away unrealistic expectations and meet Aaron where he is.  Be on his side, continue to train, and always see the world through Aaron eyes more than through my own.

And to realize how difficult it must be for him to climb in that van and face another day of attempting the sometimes impossible.  Just going to Paradigm today was huge for Aaron, much less the thought of facing A. and somehow controlling his impulses for yet another day.

Let’s hope he has a good day.  An appropriate day.  A fun day. 

And that Aaron isn’t the one “putting down his foot”……on top of A’s foot, knowing Aaron. 

What goes around, comes around.

 

 

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. 

 

 

  

 

I Love This Day

Aaron had an appointment this afternoon with his Epilepsy doctor, and as always on doctor days, he and I went out to eat lunch.  Aaron loves these lunch dates, not necessarily because of the company but because of the FOOD.  But maybe I’m wrong about that, because when we pulled into the parking lot of Carlos O’Kelly’s and were taking off our seat belts, Aaron said, “I love this day.”  That made me smile a huge smile as I asked Aaron why he loves this day.  “I love this day with you,” he said. 

So OK, my heart was sufficiently melted and I was surprised I could walk into the restaurant.  Yet Aaron was already leading the way, so I had no choice but to follow.  He beat me into the entrance and was already rolling the little toothpick dispenser around as he gathered up three or four toothpicks…..while the greeters greeted him and Aaron ignored them.  The girl who ushered us to our booth smiled broadly, though, and I could tell that she understood and liked Aaron.  We moms of special children just know.   Aaron was oblivious of any of this.  He was just happy to have had the time to get several toothpicks before picky Mom made him stop……and I wondered if he still loved this day with me.

We sat down, and before our understanding greeter could hand us our menus, Aaron was already telling her that he wanted water.  Except he always asks if he can have water, as if he needs permission.  She and I both told him at the same time that our server would bring water, but Aaron was already opening his menu.  He needs lots of time to try to match what he wants to eat with the pictures that are shown.  Our greeter also handed us a special menu that was for items that would only be available for the next week.  She told us that this menu was for us to keep along with the two regular menus.

Our pleasant server introduced himself as Aaron quickly asked him if he could have water, and soon Aaron and I were looking at our menus.  Our water came, but no straws…..and straws are a staple to Aaron.  Our server immediately realized his mistake, apologized, and hurried off to bring us straws.  “He’s clumsy,” Aaron said.   “He forgot our straws!”  I was thankful that Aaron didn’t repeat this to our server when he returned to take our order.  I handed him our menus when we were through placing our orders, but I forgot the special menu laying off to the side.  He asked for it as well, and after I gave it to him, Aaron said that he thought that this menu was ours to take home.  I realized then that Aaron had pushed it to the side in order to hide it.

“Why did you think it was ours to take home?” I asked. 

“Because that girl told us to keep it,” Aaron patiently replied. 

As so often happens, statements that often slip right past me certainly don’t slip past Aaron.  Literal Aaron.

We munched on chips and salsa, and when Aaron’s salad came he dug right in to that…..only pausing to grab another chip or two here and there because he didn’t want me to eat them all.  He always keeps a close eye on the chip bowl when we eat at Carlos O’Kelly’s.  Soon our meals came, and when the plates were in front of us I took a bite of my enchilada.  Aaron looked at me eye to eye and said, “Are we gonna pray?”  He held his hand across the table for me to hold as we always do…..and my heart melted again.  How could I forget to ask the blessing?  But Aaron remembered….and I’m almost glad that I forgot because it showed me that Aaron remembers!  He remembers these important lessons…even when silly Mom doesn’t!

Aaron watched the servers as we ate, and he listened as I thanked our server for filling Aaron’s glass with water or bringing us extra napkins.  “We’re nice to the staff, right?” he asked.  I agreed that we should be nice to the staff…..the servers.  “It’s hard to be staff,” Aaron continued.  He knows that sometimes people aren’t kind to servers and this bothers him.  I remembered the last time that we ate here.  One of the servers dropped a napkin, and Aaron looked at her.  “Hey!” he said.  “You spilled your napkin.”  It was funny and sweet, and I was glad that she laughed and that she thanked Aaron for pointing out her napkin that spilled.  

Soon we saw a group of servers singing Happy Birthday to a diner.  Aaron, who doesn’t like having Happy Birthday sung to him….or to anyone, really…..did not care for this display of silliness.  “Oh my word!” he said.  “Tell those people to shut up.  We’re trying to eat!”  So much for being kind!  I was very thankful that we had an end booth, and that for once Aaron spoke rather softly.

As we finished eating, our server asked if we would like dessert.  I declined, saying that we were full, but Aaron didn’t want to let that idea slip away.   Dessert sounded very good to him today.  “Why didn’t you order dessert?” he asked.  I told him that we didn’t need dessert, and besides, we were full.  He wasn’t convinced, I could tell.

“Are you full?” I asked him. 

“Yes,” he truthfully answered, before thinking of the consequences of admitting fullness.

He recovered quickly.  “I mean, not TOTALLY full,” he explained.

I laughed….and still said that I did not want dessert.

“But I mean dessert, just for me,” he countered.

Good try, Aaron, but it’s still a no.  So we got up from our booth.  I headed one way and Aaron headed the other, so I turned to head him off, wondering what he was doing.  Aaron saw our server and I saw what Aaron was doing. 

“BYE!” Aaron said as he waved.  It was another sweet moment, and I was so thankful that our server…..our staff, as Aaron says…..told Aaron goodbye. 

I like Aaron to walk in front of me when possible in interesting places like restaurants.  That’s so I can intercept him when he stops to stare at someone’s food….or pulls the leaves of the plants…..or stops to feel the texture on the walls…..or any number of other unique behaviors.  Like how he stopped today to feel a fake cactus on our way out, and comment loudly about its fakeness. 

Of course, he immediately stopped at the faithful toothpick dispenser as we passed it before leaving.  Out came two more toothpicks as he turned the knob.  Our understanding greeter just smiled and I was relieved. 

I had told Aaron earlier that we were having chicken for supper.  As we left the restaurant, I asked him why he got more toothpicks. 

“They’re for the chicken tonight,” he flatly answered. 

Of course.  I should have known that.   

We had to interrupt our fun by going to the doctor and talking about adding a new medicine….and taking away another medicine……and doing a sleep study…..and discussing Aaron’s hand tremor….

But Aaron also had the doctor laughing about how the Rocketeer looks like a grasshopper in his mask…..and how the holes in the ceiling of the exam room were made by paper needles……and many other comments that only Aaron makes.

He had me standing in the corner of the elevator as we left the Epilepsy Center so that I could feel what he feels from that vantage point as the elevator went down.  It was just the two of us in the elevator, but I knew that if there were others in there, Aaron would still have insisted that I stand in the corner so that I could enjoy what he enjoys.  He bent over and rubbed his hands together in great delight, and we exited the elevator laughing and talking about what we felt.

We went into Best Buy on the way home, and Aaron immediately stopped at the entrance to ask the employee there if they had the Beauty and The Beast DVD….and I so resented how that guy looked at Aaron as if he was a Martian.  He needs to ride in an elevator with Aaron, I thought.  He needs to look at life through Aaron’s eyes instead of looking at Aaron through his uncaring eyes.  He has no idea what he’s missing.

Hey, Aaron!  Guess what?  I love this day!  And you know why?

Because I love this day with you. 

 

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!