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! 

 

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.

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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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Houston and Home

Gary and I just returned yesterday evening from a trip to Houston, where we got to see our daughter and her boyfriend, and our son.  Aaron stayed in Wichita, where our friend Amber and her family provided excellent caregiving for him.  He has so much fun eating out, watching movies, and just generally being the center of attention.  And we have so much fun seeing our other kids, and having some time to ourselves.  It’s a win-win.

Before we leave on a trip, Aaron is very excited at the prospect of us being gone.  Remember, no filters equals complete honesty from Aaron.  But of course, while we’re gone he calls multiple times every day.  I had told him over and over that while we were at the race track where our son works that I wouldn’t be able to answer the phone because it was too noisy to hear.  That didn’t deter Aaron one bit.  He never left a message, but just pursued calling until eventually, even hours later, I would answer the phone.

“HEYYYYYY!!” Aaron would say with great enthusiasm……as if we hadn’t talked in weeks instead of it being just hours.  And then he would launch into the story of his latest happenings at home or at his day group……what he had eaten and where……what Amber or one of her kids or her husband had done……what our Great Dane was up to……..what movies they had watched……and various other stories and comments.  He never asked what we were doing or how we were, and I certainly would be surprised if he did. 

In between all his phone calls, we did have a wonderful time in Houston…..despite the horrendous traffic that we often found ourselves a part of……and seeing or hearing of multiple fatality accidents, with detours and delays.  Oh Houston, you are so huge and exhausting!

We got to see Andrea’s genetics lab that she has gotten up and running.  Quite an accomplishment!!  She is now the lab manager.  We were privileged to meet her genetics director and hear some very affirming things about our daughter, which thrills the heart of any parent. 

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Andrea and Gary

We got to spend some precious time with Andrea’s boyfriend, Kyle, who is working hard to complete his degree as a ship’s captain.  Between his studying, projects, and work, we were very happy to see him when he could spare the time.  We also got to eat dinner our first night in Houston with him and his dear parents, Kent and Marie.

 

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Andrea and Kyle

 

We got to spend time at the NHRA racetrack in Baytown, watching Andrew as he works with Cruz Pedregon Racing.  We saw Cruz run his career best time!   And again, we heard such nice comments about Andrew and were thankful for the impact he is having on others there. 

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And let’s not forget that we got see our adorable granddogs, Darcy and Oakley.  We also got to see Aries, Kyle’s dog, but silly me forgot to take a picture!

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Andrew got to have some rare time for us to get together on Sunday evening for a visit to Andrea’s apartment, and then dinner with all of us together.  Times like this happen so seldom for us, and we were very thankful for every single minute together.

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Aaron was happy to see us when we got home, although he didn’t want to hug and he didn’t want to act TOO glad to see us.  But he followed us around most of the evening, talking and talking.  Then this morning……did I really hear Aaron get out of bed at 5:25?!  And did I really hear Aaron NOT go back to bed soon after?!  Yes, indeed I did!  I was looking forward to sleeping in just a little instead of getting up at my usual 5:30, so I closed my eyes and hoped……

But no, Aaron was awake for good.  Gary was downstairs, where Aaron went at first, and then back upstairs he thumped.  I got out of bed a little after 6:00 and walked into the kitchen to the beaming face of Aaron.  My, what bright eyes he had on this VERY early morning!! 

Gary had gotten Aaron’s coupons from the Sunday paper out for him to cut, and so his coupon cutting station was all set up on the floor in front of the television.  This gave me some time to read my Bible and drink some coffee, preparing myself for the Aaron onslaught I knew was soon coming.

Sure enough, as soon as Aaron heard the door open and knew I was finished, up the stairs he lumbered and into the room he came.  I was getting ready to iron Gary’s work clothes, so Aaron sat on the bed where he could look at me and talk to his heart’s content. 

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I decided to write down a few of the things Aaron said while I ironed and then on through the morning so you can get an idea of what I mean when I say that Aaron talks a lot.  I mean, a LOT!!  This is only a mere fraction, mind you.

Aaron, while on Andrea’s bed watching me iron:  “The big slug aliens, they had also legs.  They screeched!!”

“This is how I sit when I cut coupons.  Then my leg hurts!”

“You want me to cut diaper coupons?  Do you want me to cut wipes coupons?”

Then back downstairs, where he was watching the movie Battle of Los Angeles:  “Mom, this is the OLD movie.  The new movie doesn’t have ‘of.’  It was only Battle Los Angeles.”

“Where is Los Angeles?”

“The hideout that comes down to earth, that brings their little ships.”

“Why does the military go in the hideout?”

“They put detonators in there and blew up the hideout!”

“The woman military is cute.”

“I didn’t know a woman could be a fighter!”

“Why do they make every alien giant and look like a slug?”

And on and on and on and on he went, until finally I was able to make a legit exit to my bedroom and lock the door while I got ready.  But eventually I had to unlock the door, where Aaron promptly entered and continued his monologue as if nothing at all had interrupted him.  Finally, it was time to take him to Paradigm.

“Guess what time Amber took me to Paradigm?” he asked.

And before I could answer, he breathlessly told me.

“9:13!” he exclaimed. 

He waited for my sure response, as if 9:13 was the most amazing time to leave for Paradigm……and mom’s usual time is, of course, very sub-par.

“9:13?” I asked.

“Yes!!” he replied.  “She took me at 9:13!”

I’m still not quite sure what magic there is in leaving at 9:13, but to Aaron it was impressive and he wanted it to be for me as well.  That, along with giant slug aliens that had also legs and the woman military who was cute and could fight and ships and detonators and diapers……it was just altogether a very impressive morning, let me tell you.

Home sweet home in Kansas…..where the wind blows a lot and Aaron talks a lot.

Sometimes refreshing and sometimes it rattles the nerves, but it’s home. 

And we’re thankful.

 

 

 

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.

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.

How Aaron Rolls

Aaron and I had a day together on Thursday.  It was a day full of things that he loves…..pizza, buying a DVD, going to see a movie, watching Wheel of Fortune, and a back tickling session before bed.  Oh, and a doctor visit first thing…..which is the most important thing, but only to me.  That is definitely not the most important thing to Aaron.

We were having Aaron’s first visit with his new Epileptologist.  That’s a mouthful!  At least his name is easy…..Dr. Lee.  I never know if a new doctor is one that we will like and trust.  I also never know if a new doctor will like and understand Aaron, which is nearly as crucial in Aaron’s treatment – in my opinion – as his knowledge of medicine.

Aaron was his usual impatient self in the waiting room.  Aaron doesn’t tolerate waiting very well.  We should change the name of the room to the sighing room…..or the grumbling room…..or the impatient room.  And don’t think that Aaron doesn’t notice who came after us but is called before us!  Observant Aaron indeed notices, and indeed doesn’t care for my reasonable explanations.  This is one reason I carry a supply of mints in my purse.  They help a tiny bit to ease the pain of waiting, for Aaron and for me.

A nurse called us in, a new nurse to us.  We missed you, Jen, if you read this!  Aaron sighed as he passed her, and he sighed as he stood on the scales……after removing his shoes, of course!

“I’m tired,” he grumbled.  He wasn’t even particularly excited to see that he had lost some weight.  Why is weight loss wasted on the unappreciative, I wonder?

Aaron got up on the table and promptly lay down, but I promptly told him he had to sit up for his blood pressure check.  Watching him sit up was quite a sight for new nurse, with Aaron nearly rolling off the table……new nurse trying to help him sit……and him finally sitting upright after a few kicks of his legs.  Wow!

New nurse and I were filling in the blanks about Aaron’s meds and doses, and of course Aaron plopped back down on the exam table.  Now I was sighing.

New nurse left and soon in walked a young medical student.  He had questions of his own, some of which he asked me and some of which were unspoken but were written all over his face as his eyes darted off and on to Aaron.  He was kind, but young and inexperienced, I imagine, in the ways of special ones like Aaron.  It’s so interesting to me, and actually amusing, to see the looks on the faces of those who are trying to decipher Aaron.

By this time, Aaron was totally comfortable on the exam table.  This is how Aaron rolls.

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Medical student left, and soon Dr. Lee knocked softly and entered the room.  Medical student was with him.  Dr. Lee was instantly comfortable with Aaron, shaking Aaron’s hand as Aaron rested on the table and then shaking mine.  I knew right away, as we first spoke, that I liked him.  He was thorough, knowledgeable, in charge but in a soft way, and very good with Aaron.  He even did Aaron’s exam while Aaron remained in his prone position.   He went over lots of Aaron’s past history, and had a plan for future treatment as we talked.  But nothing new will happen until Aaron has a video EEG in June, which will require a hospital stay of several days while Aaron hopefully has some seizures after meds are removed.  Stressful, but a necessary and needed way to see what’s going on in Aaron’s brain now as compared to his last video EEG years ago.

Aaron was happy to finally struggle up and off the exam table, get on the elevator, in the van, and go to Sam’s for a quick pizza lunch.  Home to let the dog out, a run into CD Tradepost for his DVD, and finally we were at the theater.  We were finally going to see Rogue One!

I paid for our tickets, with Aaron standing close and observing everything carefully.  As I signed the receipt, I noticed that the girl behind the counter was having a bit of a struggle with our tickets.  She was holding one ticket, but seemed to be tugging on something under the counter where our other ticket should have been printed.  Soon she was on her knees, working on the ticket machine, I guessed.

“Sorry,” she said as her eyes peeked over the counter.  “My machine isn’t working.  It’s actually totally stopped.”

It did not escape Aaron’s attention that Mom was holding only one ticket.  His mind was calculating the fact that we needed TWO tickets.

“You mean we can’t go to the MOVIE??!!” he asked in a panic.

The girl assured him that we could go.  She was in the middle of calling the ticket taker on her walkie talkie to explain things.

“We can’t go to the MOVIE?!!” Aaron asked again.  And I scooped up my receipt and my ticket……ONE ticket……as I thanked the girl and turned to leave, taking Aaron’s arm as I wondered why this had to happen to us, of all people.  To Aaron, who must have everything just right……and a jammed, turned off ticket machine is anything but just right!

We walked toward the second most anticipated feature…..POPCORN!!  All the while, I was explaining to Aaron that all was well…..that we could go to the movie…..that the ticket taker knew we had both paid.

“But you only have ONE ticket!” Aaron argued.

I explained again as we stood in line.  It was a fairly long line for a school day, I thought.  And so did Aaron, who proceeded to sigh again.

“So we can both go to the movie?” he queried as we waited our turn.

I told him yes, very thankful that a second line opened.

“CAN I HAVE A LARGE POPCORN??” Aaron bellowed as we stepped up to the counter.  There was that look on the young man’s face, so I smiled and put him at ease.  Aaron was not going to jump over the counter, I wanted to tell him.

“So we can go to the movie?” I heard Aaron ask again as I juggled our popcorn order, cups of water, Aaron getting straws, and Aaron getting a HUGE wad of napkins.  HUGE!!!  Why does he always do that?!!  How many other people saw that?!

But that’s how Aaron rolls.  It’s like napkins are a security to him.

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He was super happy that we both made it through the ticket taker matter, and that our theater was only a short walk away.   I was super happy to see only two other people in the theater.  And VERY SUPER happy that we got the seats on the very back row, with the wall behind us.  Aaron could stretch, and make minor noises without disturbing anybody.  He couldn’t kick seats in front of him, or pull on them if he got up or got excited.

We sat down.  I exhaled, leaned back, and totally relaxed.  Only three more people came in, for a grand total of seven movie goers on this day.  Another reason to relax.

But Aaron was not sitting back.  He was not totally relaxed.  He had placed his popcorn on the floor, not to be picked up and eaten until the movie actually started.  Not when the lights dimmed.  Not when the movie instructions about talking, cell phones, etc., started.  Not when the movie trailers began.  Only when the Rogue One movie was actually and for real on the big screen would Aaron pick up his popcorn and start eating.

In the meantime…..

As soon as we sat down………popcorn placed on the floor………napkins squished in one cup holder……..water in the other cup holder…..Aaron pushed up his shirt sleeve in order to see his watch, which is always pushed halfway to his elbow.

“It’s 2:02,” he said.

“OK,” I answered in my relaxed mood.

“When it’s 2:02,” he asked, “does that mean it will start soon?”

I knew we were in the countdown.

“It won’t be long,” I assured him.  “It starts at 2:15.  So how many minutes is that?” I asked him.

“Thirteen minutes,” he flatly answered.

We sat there in blessed quietness, me continuing to relax.

Aaron pushed his shirt sleeve up again.

“It’s 2:04,” he informed me.

I just shook my relaxed head.

And munched popcorn…….because I have no strict rules about the proper popcorn eating time.

Soon, the sleeve pushing happened again.

“It’s 2:10,” I heard in my relaxed state.

I guess it was 2:15 when the lights dimmed and the announcements started and the trailers played and all the other stuff happened on the screen.

The movie started, FINALLY, and Aaron promptly reached down for his popcorn.  It was only then that he leaned back, partially, and ate to his heart’s content.

I only had to hush Aaron a few times, and try to answer questions a lot of times, and wonder why Aaron was so obsessed over whether Luke was in this movie!!

“Where’s Luke?”

“Is that Luke?”

“Maybe he’s Luke?”

“Will we see Luke later?”

I am THE most uneducated person to ask about Star Wars, but Aaron will ask anyway.

But it’s OK.  We were on the back row, all relaxed…..with popcorn…..and a wad of napkins……and water to slurp with his straw……which is how Aaron rolls.

Actually, I’ve learned to roll with Aaron in most situations, relaxed or not.  That’s because Aaron is going to roll the way Aaron rolls, and usually there isn’t a lot I can do about it.

May as well roll with it, and smile, and enjoy the ride with Aaron……Aaron’s way.

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