Helping Dad

Gary has been in the process of putting up a small shed in our back yard, one that can hold our garden tools and implements.  Aaron has been very interested in Gary’s work.  Last Saturday, Aaron knew that Gary was going to be once again laboring out in the heat.  He wanted to go out and help Gary, so after Aaron got his morning routine accomplished, he walked with purpose to the shed site to see what he could do.

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Aaron doesn’t have great manual dexterity or skill, but Gary didn’t say a word about that fact.  He welcomed Aaron, even as he was searching in his mind for a job that Aaron could help with at that particular point. 

He told Aaron that he could help by handing him the screws when he needed them as he worked on securing the floor to the frame underneath.  But for some strange reason, Aaron said that he didn’t want to touch the screws with his hands.

Hmmmmm……

So Gary told Aaron to hold the box of screws, which Aaron was very happy to do.  When Gary needed a screw, he would reach into the box that Aaron held and get one out. 

Now Gary didn’t really need Aaron to hold the box of screws.  Gary could have easily just scooted the box around and keep it handy as he worked.  But he would never have hurt Aaron’s feelings by not giving him a job to do. 

There Aaron sat, in the hot sun, holding the box for Gary.  And talking, I’m quite sure.  Talking about his Star Wars game…….his Star Trek television show that he is watching……the latest movie he has decided to watch……and any number of other things that really only Aaron is interested in.

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I’m also quite sure that Gary would have much preferred some solitude outside……time to work alone after a long week of endless people and situations at work…….time to hear the birds……time to ponder his own thoughts.  But Gary saw beyond his own desires, and saw Aaron’s.  He knew how much Aaron wanted to help and he knew how much it would mean to Aaron to do so.

I believe, too, that Aaron wanted to do a man’s job.  Time with a man, especially time with his dad, fills a need in Aaron that he probably doesn’t even recognize. 

It did my heart so much good to look outside and see the two of them working together.  It did my heart good because I knew that it was doing Aaron’s heart even better.  And it was very pleasing to Gary to give Aaron that opportunity, but even more that Aaron wanted that opportunity to help. 

Such a simple time it was, and not one that lasted all that long.  But the impact on Aaron was huge, one that will last much longer than the actual helping did. 

Aaron walked inside later.  “Dad said I helped!” he proudly told me.  And I praised him for that, which made him smile and rub his hands together in delight before he went on his way.

Gary and I don’t have all the answers to Aaron’s needs.  On some days and in many ways, we feel like we blow it, for sure.  But I looked at this scene on that hot Saturday and I knew that Gary got it right. 

Being a dad is incredibly important, and for a dad of a child with special needs, it’s also incredibly difficult at times. 

How thankful I am for this man who has stood by my side for all these years!   He has stood unbending through hard times, but he has also bent down plenty of times to meet Aaron where he is. 

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Happy Father’s Day to Gary! 

 

You Want to WHAT?!

Yesterday I took Aaron to Great Clips.  I have so many stories that have come out of our Great Clips “haircut/beard trim/anything else on the face that can be buzzed” visits.  So there we were, with me telling Aaron to not barge in the door without me, but he did anyway, as always.  He marched up to the counter and then just stood there staring down at the tempting Dum Dum Sucker bouquet in a bowl that sat there.  I told the stylist that we had checked in online, she said we were next, and I told Aaron to follow me and to not get a Dum Dum until we were done done. 

I didn’t really say done done but I thought it sounded cute.  😊

Aaron would have thought I was weird.

So we sat down to wait for a minute.  I told Aaron to hand me his glasses, and his watch.  He, for some reason known only to him, also removes his watch when it’s time for his haircut.  I have gotten many a smile from people as they watch Aaron remove his glasses and then his watch.  I’ve also told many people to be thankful that this is ALL that Aaron removes!

Anyway, I told Aaron to hand me his glasses and his watch so that he could be all ready when the girl finished sweeping up the hair on the floor.  Aaron was watching the hair sweeping with great concentration. 

“Hand me your glasses,” I repeated.  But Aaron softly said no as he shook his head and continued to focus on the girl and the broom.

I waited a few seconds.

“OK, hand me your glasses,” I said again.

But again Aaron said no as he intently watched the stylist finish her sweeping.

I decided to test it one more time, knowing full well what Aaron was doing.  And one more time, he would not remove his glasses.

“All right, Aaron, I’m ready,” the girl said. 

And as if a spell was broken, Aaron came to attention.  He took off his glasses, handing them to me, and then off came his watch. 

You see, Aaron wouldn’t remove his glasses until his name was called.  It’s the same reason he won’t eat ice cream when watching television unless the show is on.  He will NOT eat ice cream during commercials because commercials are NOT part of the show, and he wants to eat ice cream during the show. 

Get it?

Well, we better get it because Aaron is NOT going to change.  These are just two very small examples of how Aaron does things Aaron’s way.  I looked at his glasses and his watch laying in the chair beside me, and I thought of the example they were of Aaron’s world, lived Aaron’s way.

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Sometimes Aaron’s ways are funny.  Like walking into Subway today after I picked him up from his day group, and reminding him again to stay with me and to enter quietly.

Who am I kidding?

And the staring man sitting there did not sit well with me, by the way.  Good grief!  Aaron’s not an alien, much as he would love to be!

But I didn’t have time to dwell on rude staring men because Aaron was at the counter and he was not ordering a sandwich.  He was telling the nice girl about his upcoming day tomorrow at his day group.

“Guess what movie Paradigm is going to see tomorrow?” he asked this perfect stranger, as if he had known her forever.  She smiled but was a little taken aback.  Aaron has that effect.  He offers no “hello,”……no “how are you?”……..no introduction of any kind.  He just launches into whatever is on his mind at the moment.

And he rubs his hands together while he talks, at differing speeds depending on his depth of excitement at what he is telling.  This time his hands were probably at a slow to medium pace.  Kind of mesmerizing, actually.

Aaron didn’t pay attention to me trying to distract him……trying to get him to just place his order instead of telling this stranger all about his coming day. 

“What movie?” she asked with a welcome smile.  She was getting it.

“We’re going to go see THE MUMMY!!!!!” Aaron exclaimed, his hands now at a moderately fast pace.  “Have you heard of that movie??!!”

Somehow we ordered a club on Italian with extra cheese in between mummy comments.  All was done, I had paid, and was sure that we were free to leave.  A young man who worked there had just wheeled out a large display of chips that needed to be placed just past where we were standing, so I was urging Aaron to follow me. 

Oh, but Aaron had one more thing to say.

“I love Natalie!!” he blurted out, “and I want to marry her but my Mom says I CAN’T marry her!!!”    

Well.

I would have hummed the theme song to Days of Our Lives if I knew it.  This day of my life had just turned more interesting than it already was. 

I didn’t dare look at the rude staring man. 

Aaron’s hands were now at a furious pace……a smoking pace.

The girl just smiled, a very large smile.

The boy whose head was poking out from behind the chips display was deciding whether his smile was OK, so I smiled back to assure him that it was.  What else is one to do? 

I told Aaron that it REALLY was time to go.  I always wonder what people who experience Aaron like this tell their families or friends when they go home.

Aaron has been a huge mixture lately of ups and downs as he adjusts to a medicine increase, and whatever else is going on in that brain of his.  I’ve been pretty exhausted with it……very frustrated at how he’s been treating us and treating others, especially our friend who visited from Arizona……just plain tired and weary.

But there are times of laughter, too, and times when Aaron’s way of doing life is just downright hilarious if you can only step back beyond embarrassment and enjoy it. 

Easier said than done some days, but Aaron’s not going to wait on us to figure it out.  He’s already burst through that next door and found someone else to talk to!

 

The Beauty IN The Beast

My phone rang this morning, and there on the line was my very dear friend, Wendy.  I knew right away from the sound of her voice that something was wrong.  It was Elijah, Wendy said, her tone flat and exhausted.  He had run away again, on his bicycle, and had almost gotten on highway 24.  Somehow Wendy got him back, although we didn’t go into all the details of that.

Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is.  He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing.  Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop.  Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.

It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents.  And for Elijah……and the whole family…….they live between a rock and a very, very hard place.

Seizures cause changes in the brain.  These changes can contribute to behaviors that defy reason.  Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors.  Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.

Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours.  Yet preventing or lessening seizures is of paramount importance.  It’s literally a life or death situation.

But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

No disease or syndrome of ANY kind is easy to bear.  But some are, sadly, easier to explain.

I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.

We get “the look.”

We get the questions, spoken or not.

We get “the talk” from teachers or our friend’s parents.

And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need.  That our special children desperately need.

It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”

I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”

Today I gave our Aaron a fun day after his four days in the hospital.  We went to see Beauty and the Beast.  Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.

As the movie progressed, I was pretty amazed at Aaron.  He was completely enraptured by this movie.  He was so still and quiet, except for the rubbing of his hands together that is just so Aaron.  He rubbed his hands softly, unless there was a very exciting piece of action.    He ate his popcorn but didn’t even want a second tub.

As I glanced at him during the movie, I saw him smiling.  His eyes were big and focused totally on what was taking place on the screen.  He loved the characters and the drama and most definitely the music.

But the character he loved the most was the Beast.  Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.

Aaron at one point simply said, “I love this movie!”

And when he said it again, a little later, Aaron laid his head on my shoulder.  It was pretty incredible.

Aaron wasn’t the only one, though, that was completely taken by parts of this love story.  I was, too, but for reasons that went far beyond Belle and The Beast.

I was looking at what can transpire when a Beast – or a person – is loved.  Is truly loved and valued for who they are under their rough exterior.

Wendy’s sad and tired words played through my mind as the music played on the big screen.  My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.

Elijah and Aaron are so much like the Beast in some ways.  They can evoke a measure of disbelief in how they act and in what they say or do.  They are at times unlikable, impossible to understand, and downright annoying.

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But there is another side to them, and to so very many others with these same issues.  A side that blooms under love and understanding, as much as possible.  And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.

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All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me.  And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

            I wonder why I didn’t see it there before.

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

            But there’s something in him that I simply didn’t see.

Aaron and Elijah, and many like them, have so much more in them than we often see.  They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.

They need what the Beast needed.  They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.

That “something” is love.  Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.

Belle and Beast

Aaron and Elijah have lots more awareness than we realize.  Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

He knows very well that the Beast loved Belle for who she was as a person.  That’s real love.

And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.

I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.

But our kids will grow under unconditional love, some days more than others.

And all of us giving them real love…..not fake love…..will grow even more.

There truly is beauty in the beast, if we just love and look.

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Take Time

Last year, especially in the fall, we were having a terrible time with Aaron’s behaviors.  He was generally miserable, and so therefore everyone around him was miserable as well.  Poor behaviors, no filters, and an inability to figure out cause and effect, can certainly produce some headaches for everyone.  It’s the side of autism as well as the effects of seizures, at least for Aaron and for others that I know, that is most difficult to understand.  Difficult, too, to have compassion and empathy for our adult Aaron when he is hurtful with his words and careless with his actions. 

Aaron seems so high functioning.  He is, in many ways, just that.  So it’s very hard to decipher when he is manipulating us and being willfully disobedient, and when he is truly on a track that he just cannot control. 

We see a wonderful psychiatrist for Aaron’s autism.  Gary and I resisted any drug intervention for a long time, but eventually years ago we decided it was time to see if medicines would help Aaron.  Several have been tried over the years. We feel that we have found a beneficial drug now.  The change in Aaron has been dramatic, for the better.  Perfection?  No.  But the improvement we’ll take, for sure!

Since we increased Aaron’s dose of this medicine in January, he has done so well at his day group and at home that it’s been like a vacation.  Well, not totally – but definitely we have seen positive strides. 

But then this week happened.  It’s not been over-the-top awful with Aaron, but he hasn’t been his chipper and happy self as much as in the past few months, either.  He had been collecting steam for two days, disgruntled in the mornings and just very edgy.  Yesterday morning he was fully on track for a bad day, and I didn’t have the ability to derail him, try as I might. 

To add to the volatile mix, I am very vulnerable right now.  Honestly, I don’t handle holidays very well sometimes.  That’s because I miss our two kids who live too far away to come home quickly.  My loneliness for them runs deep during holiday time…..any holiday……and I am more emotional.  Easter is this Sunday.  I love what this time of year is all about.  I long to live every moment in the victory that is mine in Christ.  Then along comes Aaron…..

God bless him!  I picked him up from his day group yesterday.  For maybe one minute things were fine.  Then he told me that he had given his money away….again….and that he did do this and didn’t do that.  And I was just done.  I didn’t yell, but I lectured, which is almost always ineffective with Aaron.  We can do this and we won’t do that and maybe so-and-so……  And I was cold and distant, which makes Aaron feel abandoned. 

We were home, I was in the kitchen, and Aaron kept coming in to say one more word…..to throw one more barb at me.  It’s amazing to see how he thinks.  How I can be making a profound point, eyeball to eyeball with him, and then to have him open his mouth and still be way back at where he was in the beginning, totally not connecting things the way most of us would. 

He finally bent over, hands rubbing furiously together like he does when he’s excited…..but this time he was NOT excited……and his eyes were wide and wild. 

“I don’t love you anymore!!” he said through firm lips. 

And he waited for my response.  I turned my back and it hit me.  I am vulnerable.  I am tired.  I am emotional. 

It’s the perfect time for Satan to attack.  He is no gentleman.  He loves to kick Christians when we are down.  I knew that the adversary of my soul would have been thrilled for me to lash out at Aaron with my words……to release all my pent up anger at him……and then to blame my reaction on Aaron and on my emotions and even on the upcoming holiday! 

I had asked some friends earlier in the day to pray for Aaron.  I know they were praying for me, as well.  And there in the kitchen, with my back to angry Aaron, I prayed, too.  I asked God for peace, for wisdom, and especially for Satan to be defeated right then and there.  I claimed God’s power over our home and over this situation, recognizing that His power was and is all that I need. 

I hoped for time with Gary alone when he came home from work, before Aaron bombarded him unexpectedly with all the sordid details of the day.  That doesn’t often happen, but God was so good.  Aaron was busy in his room when I saw Gary’s truck pull in.  I was able to meet him in the garage, where he knew right away that something was wrong.  We had alone time to talk before Aaron burst through the door.  Gary was ready then, able to be kind and calm, with understanding. 

I was amazed at the happy Aaron that came in the house soon after!  He ate supper with us and acted as if nothing happened.  I was so thankful!  And after Gary and I cleaned the table, Gary told me to come with him as he headed out the door for a walk around the yard.  That sounded wonderful to me!

But it also sounded wonderful to Aaron, who of course knew what we were doing.  My heart sank a little as he followed us outside.  He didn’t care that he was wearing his pajamas already…..didn’t care who might see him……didn’t care that he wasn’t wearing shoes.  So I told him to take off his socks, and he happily joined us for a stroll outside. 

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It actually turned into a very sweet time.  Gary showed Aaron the sunflower plants that were popping up in the garden from last year’s seeds that had dropped in the soil.  Gary pointed out the deer tracks all around, the toad jumping in the water, the clearing he’s been doing out back, and the new grass seed planted.  He pointed out an ant hill and how busy the ants were working.

He showed Aaron how the oak tree is budding and how the buds look like baby pineapples.

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He showed Aaron the oak tree seed pods that fly like a helicopter when you throw them in the air…..things that Aaron knows but that are fun to see again with fresh eyes.  Then Aaron threw one up and watched it land.

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Suddenly Aaron remembered something that HE wanted to show Gary.  It’s something that I had pointed out to Aaron a couple days earlier. 

“DAD!!!  Come look at this plant!” Aaron insisted.

We followed Aaron, with me knowing where he was headed, and we found him standing there just staring at the Lilac bush.  I love the way he stops and stares at things that interest him, as if he’s absorbing every detail…..which he probably is.

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Aaron then leaned over and smelled the sweet lilac scent, and Gary and I followed. 

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I was filled with more than the smell of lilacs.  I was filled with reminders of how important it is to give Aaron time…..time to work through his frustrations and anger without losing mine.  Time to hopefully express himself better.  Time to join Gary and me in a few moments of simple pleasures.  Time for him to see and to know that he is loved.  Time to hopefully show him how to live in thankfulness for all that God has given him. 

If I’ve learned anything with Aaron and with autism, it’s that taking time is absolutely necessary. 

Take time to smell the flowers.

Take time to understand our Aaron.

What Will I Wear?

Aaron notices much more than we sometimes give him credit for.  I love how he will point something out to us, often something that we never paid attention to at all, and then offer his comments on it…..of course……whether we want to hear them or not.  We usually DO want to hear what Aaron has to say, but trust me – there are times when we do NOT want to hear what comes out of Aaron’s mouth. 

Aaron rarely gives any thought to whether we want to hear his observations or not.  His insights may be new, or they may be ones that we have heard over and over and over and over…..and over……again.  It doesn’t matter one whit to Aaron.  He would probably implode if he didn’t talk, so talk he does……and we listen, regardless.

He shares things with perfect strangers, too.  I took Aaron to Wal-Mart with me after I picked him up from Paradigm on Friday.  Aaron was happy that I had found a soft fuzzy blanket on sale and that I had put it in our cart. 

“Is it for ME?” he hopefully asked.  But when I told him it was for our aging Great Dane, Jackson, Aaron was not at all disappointed.  He loves Jackson. 

Aaron sat on the bench near the register as I checked out.  I loved the look on his face as I looked at him and smiled.  Inside I was hoping not to hear him blessing us all with his ear splitting loud clapping…..or a silly ‘meow’……..or a fox whistle……or a very embarrassing farting noise. 

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But Aaron didn’t stay on the bench for very long.  No.  He saw the cashier ring up the soft fuzzy blanket, which reminded him that he had something important to share with her.  He didn’t care one bit that he didn’t know our nice Wal-Mart associate.  He did know, though, that she needed to know something.

So he got up from the bench and purposefully marched over to where she and I were finishing my transaction.  He pointed to the soft fuzzy blanket.

“That’s for our dog.  He’s nine years old and he has weakening in his muscles.”

She thought that was so nice to be buying our dog such a nice soft fuzzy blanket.  She and I were starting to have a dog conversation when we heard Aaron again.

“LOOK!!” he blurted out.  And there he stood, lifting up his right arm and showing the poor unsuspecting soul his yucky yellow and purple bruise on his arm. 

“Aaron…..” I started, but he barreled right over me.

“My desk chair fell on top of me when I was reaching for apples and peanut butter, and I got a bruise!!” he explained. 

She showed him his desired amount of shock and sympathy while I tried to hurry up my payment.  Knowing smiles were exchanged between us as I readied to leave.  Well, knowing smiles shared quickly between her and me. Aaron was already off in search of his next victim, so I had to run.

So back to what Aaron notices, and then shares all too fully with us…..or anyone else who is fortunate enough to be nearby.

On Thursday I wore this blouse.

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Aaron came into the kitchen, looked at me with his head tilted to the side, and then offered his opinion.

“That shirt looks like it should be colored,” he commented.

This forced me to look with new eyes at my shirt. 

“Aaron,” I asked.  “Does this remind you of the adult coloring books that you and I have seen?”

“YES!!!” he replied, so excited that I had gotten what he was trying to convey.  “It looks like it should be colored!”

“Do you like this shirt?” I asked.  And he told me that he did like my coloring shirt, very much. 

So on that day I was fun.

The next day I wore this blouse. 

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Aaron had come in the bedroom and seen me wearing it, before I added a sweater.

“WOW!!” he said, in awe.  “You look like a princess!”

I just laughed.  A princess?  But there was something about this blouse that he loved, and so he saw me as someone very special as I wore it. 

On Sunday, as I was getting ready for church, Aaron came in the bathroom and saw me wearing this blouse.

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“Ewwww,” he said in a measure of disgust.

“What’s wrong?” I asked him.

“What you have on,” he answered. 

“Don’t you like it?” I asked.

“NO!” he replied.  “It’s ugly.”

There was something about it that wasn’t fun like my coloring blouse and wasn’t special like my princess blouse.  This blouse, to Aaron, was ugly……ugly enough to him that he reacted instantly to it.  He wasn’t trying to be mean.  He was just being honest.  The design; the colors that he saw since he’s color blind, perhaps; or maybe the style – whatever it was, he didn’t like it one bit.

I’ve thought about all this since our morning yesterday.  Aaron was not one bit happy to be going back to Paradigm after enjoying his weekend.  I’ve learned to just let him work through it, to not force the issue, but to let him make the decision.  He knows the consequences of going and of not going, so it’s good to let him be the one to choose. 

But yesterday, on this Monday, he was extra unhappy and extra grouchy.  Downright hateful a couple times. 

“I want a break!!” he angrily told me.

“You just had a break,” I told him back, but not angrily.  I know better.

“When was my break?!” he wanted to know.

“Saturday and Sunday,” I answered as I fixed my hair.

“Don’t say that Saturday and Sunday were my break!!” he told me.

“OK,” I said.

So I’m fairly certain he came in the bathroom a dozen times, each time saying with more and more anger, “Don’t say that Saturday and Sunday were my break!!”

He continued on down his anger path.  I didn’t react……I breathed deeply……I prayed…..and I looked forward to Aaron making up his angry mind about what he wanted to do. 

He finally came in the bathroom, bent over while he rubbed his hands together, and said, “I don’t love you anymore!!!!”

Then he was spent.  I was, too.  He walked away, calmed down, went to Paradigm while he happily listened to music, and the storm passed. 

What I wear, in a sense……what I display to Aaron when he is so angry…..makes a huge difference in the outcome.  It’s much like my blouses that caused a reaction in Aaron.  If I show anger when he is angry, the result is explosive and nothing is accomplished.  If I show patience, then he sees that his anger isn’t accomplishing what he hoped it would.  If I ignore him totally for awhile, he becomes uncomfortable and realizes that he has crossed a line. 

I can choose what I wear during these episodes just as much as I chose those three different blouses on three different days.  Will I be fun, or special, or ugly? Every situation with Aaron is different, too, so I need wisdom…..which is a big reason that I pray.

Oh, I get upset, too.  I mutter under my breath……think not-so-kind thoughts……and if Gary’s here, he is at times my sounding board, as I am his. 

But still, what I wear in front of Aaron is so important.  Above all, I must wear unconditional love.  It’s hard sometimes to do that, especially when he tells me he doesn’t love me anymore.  Thankfully, that doesn’t happen often, but when he does go that far, I struggle.

When I picked Aaron up from Paradigm that afternoon, he acted as if nothing had happened between us at all.  And last night, as we watched Wheel of Fortune, Aaron starting rubbing his hands together wildly.

“MOM??!!” he loudly said, “I LOVE YOU!!”

Which is Aaron’s way of saying that he is sorry, and that he does love me for real.

I slipped on some forgiveness right then.

“I love you, too, Aaron.”

It felt very nice, maybe like the princess blouse.  And fun, like the coloring blouse. 

I’m thankful the ugly was gone, at least for now. 

The One More

Aaron came into the kitchen this morning, a little after 11:00, so I asked him if he wanted some left over pizza for lunch.  He said yes right away, but then I saw his eyes dart to the clock on the oven.

“It’s not lunch time yet.  It’s 11:06,” he flatly declared.  “When it becomes 12:00, it’s lunch time.”

He turned and left the kitchen, happily despite being hungry, because hunger is easier for Aaron to handle than eating lunch at the ungodly hour of 11:06!!  And no matter how many times this scenario is played out in our home, it never gets old or tiresome to me.  I mean, some of Aaron’s rigidity or habits can at times wear me down, but his precise keeping of times in his life nearly always makes me want to laugh. 

There are some things that Aaron is going to do because Aaron’s just going to do them, almost every single time that he is given the opportunity. 

Will Aaron pull just one wipe out of the dispenser at the grocery store?  Well, no!  One wipe is so boring and useless!

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Will Aaron be happy having one fork with his sausage at breakfast?  No, never!  He even gets out a spoon when he’s eating pizza!!

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Does Aaron want to vary the route we take as we drive to Paradigm every weekday morning?  Are you kidding?!  He thinks his way is faster.  But I did take a quicker route on Friday, to his great dismay.  I asked him why he doesn’t like going my way and wants to go his way. 

“Because this way is far away from the short one!” he answered.  Which still left me puzzled, but I do love how he expresses himself.

A few evenings ago, he was concerned about running out of toilet paper in his bathroom.  He kept talking about it, and I hadn’t gotten a new package out yet.  We were getting his bed ready for the night and toilet paper was still on his mind.  I told him to go check his bathroom cabinet for toilet paper.  Soon he was back in his room, happily holding a single roll of toilet paper.

“There was one more left and this is the one more!” he declared, quiet relieved.

So the next evening I carried up the big package of toilet paper, which Aaron watched me open.  He watched me put two rolls in the guest bathroom holder, and then wanted to carry four rolls to his bathroom.  We settled on three rolls instead, and Aaron very seriously offered to take them upstairs himself……probably more to be sure the job was done correctly than anything else.  I mean, toilet paper is important, right?  It certainly was to Aaron at that time.

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I can count on Aaron making something random like that of utmost concern, and then not getting it off his mind until the situation is resolved in the way that’s needed……or in the way that gives him peace, thereby giving all of us peace!

Let’s see…..what else can I count on Aaron doing?

I can count on him every night, after we watch Wheel of Fortune, changing the channel to Fox News.  He sits in his chair, eyes on the screen, watching and waiting for what he knows is coming.

And when he see Bill O’Reilly on the screen, he smiles, still waiting expectantly.  Bill talks for a minute, introducing what’s coming on the program that night…..and Aaron stares, a slight smile on his face.

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And THEN, it happens!  O’Reilly sweeps his arm around and points at the camera.  “CAUTION!!” he says.  “You’re entering the no spin zone!!” 

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Aaron laughs and laughs, loving every second of it.  Every night that O’Reilly is on, this is what Aaron does. 

And I laugh, too, because seeing all of this through Aaron’s eyes is so much more fun than just seeing it as “same old, same old” every night.

We can count on Aaron talking to us until our ears are totally exhausted.  This is especially true if we are a captive audience, with no place to run, like we were in our hotel room during our Thanksgiving trip.  Oh my, did he talk!!

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And he will also tell everyone of his latest exciting happening, which also happened during Thanksgiving.  Poor Aaron slipped in the hotel tub, cutting the bottom of his foot on the drain stopper.  This was momentous to Aaron and he felt that everyone else would think it was momentous, too…..especially when he told them about it.  But he doesn’t just tell.  He likes Show AND Tell.  And my very sweet sister, Mary Beth, was the recipient of not just the telling, but also the showing, as you can see.

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HaHa!  I can still see her caring face and hear her wonderful laughter. I can also still hear my surprised gasp when I looked over and saw Aaron with his sock off……and blood on it that had seeped through the bandage…..and him sitting on the floor, not a care in the world but to show Aunt Mary Beth the whole gruesome wound. 

At least it wasn’t like his VNS surgery years ago.  The scar was on his upper chest, so several people had the unexpected treat of Aaron quickly pulling up his shirt in order to show them the evidence of his surgery.  The whole thing was just a tad…..shocking…..but not to Aaron.  Not at all to Aaron.  It got to the point that every time Aaron started telling someone about his VNS and his hands headed toward the bottom of his shirt, I yelled, “NOOOO!!”  I got some strange looks for that response, but those people have no idea what I had just spared them from.  No idea at all, really.

But you know, it meant a lot to Aaron that Aunt Mary Beth enjoyed seeing the cut on the bottom of his foot, blood and all.  He didn’t think it to be the least bit strange that he sat on the floor with people all around and pulled off his shoe and sock.  And Mary Beth rolled right along with it, loving every minute and loving Aaron, most of all.

That’s what we have to do.  Roll with Aaron, expect the expected, and brace ourselves for the unexpected.

Speaking of roll, remember the one roll of toilet paper?  “There was one more left and this is the one more!” Aaron declared.

Aaron is our “one more.”  He always has one more routine…..one more thing to tell…..one more surprise…….one more way to make us laugh or sigh or roll our eyes or want to scream.    

And tomorrow is one more day for us to see what Aaron has in store.  One more day for us to see the world through Aaron’s eyes, like it or not. 

One more day to hopefully have the unexpected joy I had today when Aaron put his arms around me from behind, laid his head against my back, and said, “I love you, Mom.” 

I’ll take one more of those moments any day!

I love you, too, Aaron!

 

The Introduction

Sharing stories about Aaron is a good way to have insight into how Asperger’s Syndrome affects not only him, but all those who live and work with Aaron.  A key to surviving life with Aaron is to understand what makes him tick.  Then you can better function yourself, and not live in constant frustration or bewilderment.  Training and directing him is also accomplished with better results when you can get inside his head and realize just how and when to redirect, or when to wait it out. 

But then there are those times when you have no idea what is going on inside that head of Aaron’s until it’s out there for all the world to see and hear.

That scenario happens often with Aaron and us. 

We moved to Wichita (Goddard), Kansas in 1999 when Gary retired from the military and accepted a job here.  A couple years later we enrolled Aaron in a school here that offers training to high functioning special needs students.  This training prepares them, hopefully, for the job market upon graduation.  There were many great aspects of this school and its program, but it never was a good fit for Aaron.  

I’ll never forget the open house and parent night during Aaron’s first year.  The students were to accompany their parents into each of their classrooms and introduce us to their teachers.  The students were treated as adults and so were to address each teacher by their first name.  The evening was going very well and Aaron was doing a great job.  It was nice to meet each teacher and to see his new environment that he was to be a part of now. 

The evening was winding down and we had one more teacher to meet.  As we stood in the hallway, waiting for the family ahead of us to come out of the room, Aaron was beside himself with excitement.  When he’s excited he bends over and rubs his hands together, over and over.  He hadn’t acted this way with any of the other teachers and so we were perplexed at this behavior.  We tried to get him to calm down but to no avail.

Finally, the room was empty and we walked inside.  There stood his teacher, with a very pronounced spiked haircut.  Remember how Aaron is attracted to the unusual?  Well, Aaron thought that her hair was just that……very unusual.  Of course, Aaron had not shared anything with us about her hair.  If he had, then perhaps we could have averted what happened next.  

Aaron quickly walked over to her, rubbing his hands together, and said, “Mom and Dad, this is Cindy (name changed).  She looks like a hedgehog, doesn’t she?!”  

Oh.  My.  Goodness.  Time stood still.  We were horrified.  Aaron was delighted.  Cindy was unhappy.

I’m surprised that I’m still living, as many times as Aaron has caused my heart to nearly stop. 

Her reaction told us that things would not be easy for Aaron in this school.   I’ll just say that it was a very long two years. 

But Aaron did LOVE that haircut! 

For the whole two years.

Trust me.