Category: Adult Autism

I Know What Colby Jack Is!

I thought I would share some highlights (or not!) of Aaron’s week.  It’s been full of ups and downs, as usual.  Our life with Aaron is always a yo-yo type existence.  We may be laughing one minute, and not long afterward we may want to cry.  That’s where I’ve been this week.  Thursday was my day of tears…..tears of frustration and worry for Aaron as he bears the repercussions of his behaviors.  Aaron had a rough time at his day group on Wednesday, so he wanted to stay home on Thursday.  I let him, all the while wondering if I was right in doing so.  I wish I could say I have all the answers, but Aaron constantly shows me that I do not. 

I’ve been with Aaron, even recently, when he walks into Paradigm, his day group.  As soon as he walks in the door, he puffs up and usually launches out toward someone.  It may be to say hello and then try to say something funny while he bends over and rubs his hands together in glee….or it may be to give someone a resounding whack on their arm or back or rear…..or it may be to step on someone’s foot……or it may be to say something that he thinks is funny, but which is not funny at all.  Clients and staff have the same reaction that Gary and I have at home, either laughing or cringing or having to correct. 

After his rough day on Wednesday, and his stay-at-home day on Thursday, I was wondering how Friday was going.  When he burst in our door at the end of his day, he was happy and smiling.  We talked awhile before I asked him how his day had gone.  He told me he had a good day.  He went to a movie with the group, and Stephanie and Shauna asked him to sit between them.  We talked about his popcorn….extra large, of course…..and I asked him if he had gotten a refill.

“No,” he answered.  “Because I don’t want to get fat like ______.” 

See?  There he goes, being offensive…..and he just doesn’t get it, or can’t control his words, or doesn’t care.  Who can know from one moment to the next?  I scold and correct, but he is still sure in his mind that he doesn’t want to get fat like _____, and Mom asked if he got a refill so he had to tell her why he didn’t, and I feel that my words are useless.  Sometimes his words are actually humorous because of their bluntness as he says things that others would never say, at least out loud, but we can’t let him see us laugh.  Personal insults are never humorous, though, as we tell him repeatedly. 

Anyway, he decided that it was important to tell me about a good thing that happened.  “Mom!” he exclaimed.  “I made Shauna laugh today!”

“Well, that’s good,” I answered with a hint of caution that he didn’t notice.  “How did you make Shauna laugh?” I asked with a little dread.

“By making farting noises!!” he proudly answered, bending over then while he rubbed his hands together in delight.  How does he have skin left on his hands anyway?

You see why I ask with dread.  Do I act proud that he made Shauna laugh, even though it was because he made farting noises?  Or do I frown and try to correct his continual use of farting noises for affect?  I chose to try to correct, with a smile, but he was already off and running with his next subject.

We had our first spring thunderstorm on Monday night.  Aaron loves thunderstorms and rain.  I didn’t even realize we were about to get a storm as he got ready for bed and told me goodnight.  His bed was just right.  We had gotten all the bumps out of the covers.  Well, I had, as he stood there staring at the one large bump that he wanted smoothed out before he would progress any further with his bedtime routine.  Mr. Snake and Mr. Skunk were in his bed just right, too, so I was able to hug Aaron goodnight and escape to our bedroom…..where Gary and I lock our door on most nights for our well-being and peace.

It wasn’t long before I heard the first rumble of thunder, soon followed by another rumble.   Thump, thump, thump!  That was Aaron walking with great purpose up the hall.  Knock, knock, knock on our bedroom door….after he had tried to first open it without knocking.  Thus the lock.

“Mom!!!”  Pause.

“What, Aaron?”

“Was that thunder?” he asked.

Yes it was.

Thump, thump, thump back to his room.

Soon…..thump, thump, thump back to our room.  Tried to open door.  Knock, knock, knock.

“Mom!!”  Pause.

Yes, Aaron?

“Is it going to rain?” he wanted to know.

I think so, Aaron.

Thump, thump, thump once again to his room.

But not for long.  Thump, thump, thump to our door once more.  Tried to open door.  Knock, knock, knock.

“Mom!!”  Pause.

What now, Aaron?

“Is it raining yet?” he asked.

I don’t know!!  WHY DON’T YOU LAY DOWN AND LISTEN??

Thump, thump, thump down the hall again…..for the last time, thankfully.  He did lay down in his bed and listen to the storm, and to the little bit of rain that we got.  It’s a process for Aaron, though. 

This morning Aaron was eating some of his Colby Jack cheese cubes, which he loves.  It wasn’t long before his hand reached over my shoulder as I sat at my computer.  In his fingers he held a solitary cheese cube….for me.  When he offers me food like that, held in his fingers that have been who-knows-where, my brain is yelling, “NO, NO!!  Don’t take it and definitely don’t eat it!!”

But my heart says, “Oh now, come on.  It means a lot to Aaron for you to take it, and even more for you to actually EAT it.” 

You see, I’ve often tried to delay the eating of such offered treats, but Aaron follows me and watches me until the morsel is in my mouth, chewed, and down the tubes.  No fooling Aaron on that one.  My immune system is awesome, probably due to all the germs I ingest with each Aaron food gift.  I thanked him for the cheese cube as I held it with suspicion, hopefully suspicion that was hidden from him. 

“See?” he said as I watched him put a cheese cube to his mouth.  “There are two ways to eat it!” 

He then demonstrated how you can bite the small cheese cube in two.  “You can bite the half off!!” he declared with delight. 

I laughed as he laughed.  Only Aaron would take a boring cheese cube and make it funny.  He never did show me the second way to eat a cheese cube because he followed me while I went upstairs, still holding my cheese cube, as he watched like a hawk to see when I would eat it…..either whole or by biting the half off.

“I know what Colby Jack is,” he told me.  “It’s cheddar and swiss!!” 

So then I was laughing at my silly little cheese cube as we discussed its true make-up, and I promised Aaron that I would eat it….which I did.  No side effects yet.

Little things become so huge to Aaron.  A storm….a cheese cube. Through his observations I find myself drawn into the complexities of even the most mundane things.  And yet Aaron so often cannot see the complexities of things that truly affect his life…..things like his comments and his behaviors that can be so annoying and insulting.  He would much rather talk about a storm or a cheese cube than talk about his hurtful words or his hitting.  This is the hidden element of his disability that so impacts his life, but he doesn’t get it.  It’s very hard to always remember this about Aaron, and to react with understanding and instruction. 

 
That little cheese cube reminds me so much of Aaron.  He thinks it’s Cheddar and Swiss, and we’re reminding him that it’s Colby and Monterey Jack.  He thinks it’s all right to do this or say that, and many of us are reminding him that it is not all right to do those things.  Life is not meant to be lived the way that Aaron often perceives it, so we keep hammering away and hoping that someday…..or at least on most occasions…..Aaron will remember what should truly comprise his interactions with others. 

It’s not farting noises, either, by the way.

 

 

 

 

 

Every Piece of Aaron

Aaron came home this past Friday full of talk about his day.  He had helped Bryan work on houses, he said, meaning that he had gone with Bryan to one of the residential houses that Paradigm manages.  He has really enjoyed helping with the repairs on the houses…..or putting together tables and chairs…..hanging curtain rods…..those sorts of things.  I’m not sure how much actual helping Aaron does, but he likes going and he likes telling us that he’s a “worker on houses.”

As Aaron talked on Friday about his day, he reached into his pocket and pulled out three packs of Big Red chewing gum……his favorite.  I guess this was his purchase of the day at Quik Trip, or somewhere, and he was very happy with it.  I knew what we were in store for over the upcoming weekend, too.  Loud chewing of several pieces of Big Red gum in Aaron’s mouth at once, and the smacking of his lips as he savored every taste of cinnamon, is what awaited us.  It doesn’t matter how many times I say, “Aaron, chew with your mouth closed.”  Or, “Aaron, don’t smack your lips like that when you chew.  Or, “Aaron!  You’re chewing like a horse!”  He’ll quieten down for a few minutes, but soon he’s back at it full force while I cringe.

I had supper going on Friday when Aaron once again walked into the kitchen, this time with an open pack of his Big Red gum.  Several pieces were missing.  I knew where they were because I could hear them in his wide open mouth as he chewed them.  Yuck!  He handed me the open pack of gum and said, “Here, Mom.  You can have some gum.” 

Now Aaron knows that I’m not a big fan of chewing gum.  I just don’t enjoy chewing gum a lot, but I thanked him for the kind gift and told him I would chew some later, after supper.  I took the pack of gum that he held out and I placed it on the kitchen counter as I turned to do something else.  After several seconds, I heard Aaron leave the kitchen, and when I turned around, this is what I saw.

 
I had to laugh.  Aaron didn’t mean for me to take the WHOLE pack of gum.  He meant for me to have one PIECE of gum.  He must have been glad that I turned my back so that he could quietly take that one piece out, lay it where I would see it, and make his getaway.

Later that night, we were watching Jungle Book.  We laughed, and were enjoying the story and the fun songs.  I kept glancing over at Aaron, who sat in his favorite chair covered with his favorite blanket.  He seemed spellbound by the movie, not making a motion or a sound…..which is very atypical of Aaron.  We watched Mowgli with his friends….Bagheera, Baloo, Colonel Hathi with the other elephants, and even the vultures.  And I kept turning an eye on Aaron, watching him as he seemed so taken by this movie.

Finally I noticed that Aaron looked different.  I looked at him while he was still unaware of my stare, which he would not like.  Was he crying?  I watched a few more seconds, and soon Aaron took off his glasses and wiped his eyes.  Yes, Aaron was crying.

“Aaron, are you OK?” I casually asked.  He said he was, so I waited a few seconds. 

“Are you crying?” I ventured to ask. 

He paused before looking at me with a halfway smile and then surprising me by saying yes.  He was indeed crying.

I asked him why he was crying and he simply answered, “I miss Rosa.”

Then over the next few minutes, while Jungle Book continued to play on the television screen, he told me that he didn’t think he had friends…..that no one was a friend like Rosa……no one understood or liked him like Rosa…..that even some of his other friends at his day group were getting tired of him.

He tried for the remainder of the movie to talk a blue streak about anything and everything, as long as it had nothing to do with what he had just said.  He had shut the door on that topic, so we finished the movie with the spell broken.  Aaron was talking nervously about whatever came to his mind, and I knew not to bring up the friend subject again at that point.

And he put a couple pieces of Big Red gum in his mouth, chewing furiously as I kept up my usual reminders to him about his method of chewing. 

Later that night, though, and several times over the course of the weekend, Gary and I had opportunity to discuss the subject of friendships with Aaron.  Poor guy.  He has so many disconnects in his autistic brain.  He just can’t control many of his actions, for one thing…..and then he has a hard if not impossible time figuring out that A leads to B which leads to C…..

For instance, his VERY loud clapping is extremely irritating.  When he claps a lot, or sometimes even once, it can make his friends downright angry.  It’s very hard for Aaron to control that clapping.  It’s like he just must clap sometimes.  But he also told us over the weekend that his clapping makes his friends mad, which makes Aaron sad.  He doesn’t always act sad, but he often is.  He showed his sadness during the movie on Friday night.  Aaron said he doesn’t have friends like Mowgli, and he wishes he did.

We gave him little instructional talks about how to make friends.  Do this, and don’t do so much of that.  Do speak kindly, for instance……and don’t hit people on their rear ends.  It seems so simple and easy to us, but it’s so very difficult to Aaron.   

Aaron has many facets to him.   So often, those facets are hidden under his loudness or his toughness.  But every now and then, we get a glimpse into what he’s thinking and more importantly, into what he’s feeling.  It’s a rare event, bittersweet because of the sadness that sometimes accompanies that look into his heart. 

It reminds me of his pack of Big Red gum on Friday.  I thought he was offering me the whole pack that was remaining, but no, he was offering me one piece.  When I wasn’t looking, he left that one piece on the counter for me to find when I turned around.  I was happy with that one piece, given with Aaron’s open heart, as much as if he had left me the whole pack.

That’s how we must live with Aaron every day as we deal with his special needs, especially in this case his autism.  At the most unexpected times, when he is ready, he might allow us to see into his mind and into his heart.  It’s usually in one little piece at a time, though.  He walks away with all the other parts that make up Aaron, maybe to be shared on another day or in the midst of another event.  He won’t sit down for an hour and share all of his thoughts and all of his inner feelings.  He WILL sit for an hour, or for several hours if we let him, and talk about aliens and movies and all sorts of other Aaron “stuff.”  But his inner workings are doled out piece by slow piece, over time.

We must be ready to seize those times, with Aaron’s permission…..almost as if he’s handing us that one piece of gum.  Piece by piece we come to understand Aaron.  And as Gary and I put those pieces together, it’s similar to having a pack of gum that’s filling up with all of our understanding of Aaron. 
 

I wouldn’t call our pack of gum Big Red, though.  I would call it Big Aaron. 

Big LOUD Aaron, on most days.

Aaron, don’t clap.

Aaron, don’t hit.

Aaron, don’t chew with your mouth open.

Aaron, don’t say those words.

Aaron, do know that we love all of you…..every single piece of you.

 

Headed Down Pity Path

I’ve been trying to decide how to write this blog post….or if I even should write it.  Yes, I think I should.  But how to do it in a way that doesn’t make Aaron look “bad” or make me look selfish.  Yet the truth is, Aaron isn’t bad but I am sometimes selfish.  I’m human and I get tired, but I also have to acknowledge where my roots often rest…..and that’s sometimes in soil that grows some undesirable attitudes. 

Tuesday night saw Aaron having four large seizures, so I was up four times with him.  I did sleep some between the episodes, which I often am not able to do, but still I was tired that morning.  I stayed up after Aaron’s last early seizure, and later I did the usual clean-up.  I stayed close to him as he lay on the couch for the rest of the morning, waiting to see if he had another seizure.  I had the laundry going and was able to do some other things while I sat there at the kitchen table.  I was on Psalm 18 that morning in my study time, which was perfect for me.  My favorite verse is there….verse 29.  “For by You I can run upon a troop; and by my God I can leap over a wall.” 

I felt very thankful as I sat there.  God seemed to be prompting me to focus on thankfulness.  I was thankful that Aaron was for the moment seizure free, warm, and safe.  Thankful that this wasn’t the day I was to take Nora to an important doctor appointment.  Thankful that my washing machine and dryer were just steps away, convenient and functioning.  Thankful that Aaron’s seizures aren’t far worse, as so many of our friends experience with their children.  Thankful that I don’t have to work, because it would be nearly impossible for me to do so.  Thankful for coffee.  Very thankful for coffee!

Later, Aaron woke up and he struggled to get off the couch.  After a few minutes, as he sat with me at the kitchen table, he told me that his arm was hurting.  I think he sprained it during one of the seizures.  Soon I asked him if he would want to eat, and we figured out together that some Cream of Chicken soup would hit the spot.  He was worried, though, that with his right arm hurting he would not be able to lift the soup spoon to his mouth.  Therefore, I demonstrated to him how he could eat by bending close over the bowl.  Aaron sometimes doesn’t like us to use our hands to demonstrate some action.  Don’t ask me why, but sometimes it irritates him.  So when I bent over to show him how he could eat, he snapped at me.  “You don’t have to show me how to do it by going like this….” he said with irritation as he copied my movement. 

It was as if he had thrown cold water in my face.  I knew that he was feeling terrible…..I knew that he has never liked physical demonstrations like this……I knew that his autism makes him very blunt…..but I also knew at that moment that I felt very hurt.  I just looked at him, and he knew very well that I was not happy.  I didn’t say a word, but got up and fixed his soup.  I got him all settled there at the table so he could eat, and I coldly told him that I was going upstairs to take my shower. 

For some time, my thoughts were headed down Pity Path.  How could Aaron treat me so rudely after all I’ve done for him?  It was very easy to rehash all of my sacrifices for Aaron, and very easy to nurse my hurt.  I was mostly silent toward him as the afternoon wore on around us.  He seemed to be fine, watching a movie, so I slipped down to Dillon’s to run an errand I had hoped to run that morning, but couldn’t because of Aaron’s seizures…..how I had to sit with him and didn’t get to accomplish what I wanted when I wanted……how my day was interrupted and my schedule trashed…..

See how it went with my thoughts?  Where was the thankfulness I had experienced earlier?  Where was my, “…..with God I can leap over a wall?”  I’ll tell you where it was.  It was buried under my self-centered thoughts, my tired body and mind, and my feelings of being very unappreciated by my son.  I had some major adjusting to do over the next hours, and some soul searching, as well. 

We all have many moments of feeling just as I did on Tuesday afternoon.   As a parent, spouse, sibling, friend, worker on the job, volunteer at church…..no matter where we are…..we will get our feelings hurt.  And as the mother of a special needs child who also has autism, it’s easy to be hurt a lot.  Aaron doesn’t have filters or feelings like we do.  He must be reminded over and over to be kind, to think of other’s feelings, to react in a nice way instead of a blunt or harsh way, and on and on.  He is very self-centered, and this is a huge reason why it doesn’t work if I am that way, too. 

I think it was important for me, personally, at that moment to step back and remove myself from Aaron and the situation.  The danger I faced, though, was in nursing my hurt instead of focusing on what God would do.  What I allow my thoughts to focus upon will determine my attitude, and will even determine whether I sin in the situation or grow in it.  To be hurt was normal.  To let my roots sink into the hurt as I planted myself in it would not be beneficial or right. 

Christ gave up a lot for me.  How often do I react to Him with unthankfulness or pride?  He didn’t hold on to his position as God’s Son, but emptied Himself of all that and became sin for me.  That’s the best example I can follow as I experience the hurt and the tiredness of being a special needs Mom….or any of the other many roles I have in this life.  It can’t be about me, or I will be continually frustrated.  It must be about honoring Christ, and caring for Aaron.

Understanding how Aaron feels after seizures…..understanding his autistic way of viewing the world….is very necessary, as well.  So is training him and reminding him of his actions, and how they can hurt or help others. 

Understanding how I feel after Aaron’s seizures…..understanding my sometimes selfish way of viewing the world…..is also very necessary.  Both must be recognized and dealt with before being allowed to get out of hand. 

Well, back to my verse in Psalm 18.  I didn’t exactly leap over that wall with God.  He more or less had to lift and shove me over it.  I wanted to sit at the base of the wall and lick my wounds, but He wouldn’t let me.  I’m glad for that!  Glad that He is patient and persistent with me.  Glad that He shows me His love.

Just like we have to be with Aaron.  It won’t be the last time, either.  For me or Aaron, either one. 

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.