He Said What?!

Today Aaron is having seizures.  I heard the first one on the monitor at 4:06 a.m. and the second one at 5:18 a.m.  Aaron would love the fact that my times are very precise, wouldn’t he?  He got up this morning for a short time………….took his meds and then spilled all of his coffee after his hand jerked.  He felt so bad about it, but I told him it was OK and made him some fresh coffee.  He showered and tried to watch a DVD before he got so sleepy that he asked if he could lay back down.  His head hurt and he was very tired, both from his meds and from the effects of the seizures.  Of course I told him to lay down and sleep. 

I turned on the monitor and kept it beside me as I did a few things around the house.  Aaron rarely has daytime seizures.  I got in the shower and was nearly finished when I heard him through the monitor, seizing.  I turned the water off and listened, which was all I could really do.  He was fine and I hurried then to finish and go check on him. 

He had already bitten the end of his tongue pretty badly during his first seizures this morning.  Now he had bitten it even more, and had more blood coming out of his mouth, oozing onto his pillow.  I wet a wash cloth with warm water and went back to gently wash the side of his face.  He opened his eyes…………and gave me a smile. 

There went that door of my heart that I rarely open, coming ajar enough to feel the hurt of this moment and this dear oldest child that God has given us.  I blinked back my tears.  I don’t want Aaron to see me crying at these times and wonder what is wrong with himself that would make his mother cry.  I tried to remember how irritated I was with him last night when I wouldn’t let him put his questionable hands in the tortilla chip bag, but made him let me put them in a bowl for him to eat.  He did NOT like that at all and became very grouchy.  If I can bring back the irritation that I felt last night, then maybe this moment of pain wouldn’t be so real.

Yet I don’t want to lose the pain………….the awareness that God has given us a special child……………for life.  Because if I lose the pain, I may lose my heart of trust in God.  I have to trust that God is sovereign and that God had a reason for giving Aaron life and for giving Aaron to us…………..or us to Aaron. 

Sometimes I look at Aaron and I think that he should have hung his college degree on the wall and be enjoying a wonderful career or ministry…………that he should be married and maybe have children of his own……………that he should be driving a car……….

Or should he?  God has given Aaron his own special life and ministry, if we but see it.  I’m convinced that God has a very unique and amazing calling for our special children………….for them to help lead us to a fuller life of faith and trust………….to point us to Christ and His love for us…………..to deepen our relationship with Christ and with others…………..and so many more possibilities that I won’t know until the Lord Himself explains it to me one day.

My dear friend, Wendy, has two sons with Doose Syndrome.  What a load Dan and Wendy carry!  What a testimony they are to so many of us!  Wendy and I have had these discussions about our boys.  And in our frail, human way of thinking…………..she and I have decided that God is going to let Elijah and Aaron drive the absolutely coolest cars in heaven!  As if it will even matter then, but it matters now and it gives us a chance to laugh and imagine the joy of it all. 

We have hope……………hope of far more than cool cars in heaven.  We have hope of grace for each day down here on this sad, tired earth……………hope that Sovereign God is with us…………….and hope that one day we’ll see Him, touch Him, worship Him…………with our sons beside us, whole and healthy and happy for eternity.

And no more dirty hands in the chip bag!   

Can you handle another toilet story?  Well, kind of another toilet story………..because it’s not really a toilet at all.  Let me explain.

Last year I bought a new porcelain scented oil warmer to put in the guest bathroom.  I placed it on the counter beside the sink on the day that I bought it.  I got busy with my day and just left it there, not putting the oil in it or plugging it in.  When Aaron came home from Paradigm, he went right to the bathroom first thing…………….and then darted right back out, carrying the new oil warmer. 

“Mom!!  Why is there a little toilet by the sink?!”

I had to laugh.  You  know, it really did look somewhat like a miniature toilet.  Aaron certainly thought so! 

Some time went by and still I hadn’t decided if I wanted to use the oil warmer in that bathroom.  I left it where I had placed it, still unused, and with Aaron’s natural distrust of toilets, this little miniature, wanna-be toilet became quite the fascination for him. 

One day he emerged from the bathroom and asked, “Mom, can I put that toilet shape smell thing in my room?” 

I didn’t let him do that, but maybe it would have been good therapy for him. 

Then on another day he asked, “Mom, can you fill up that little miniature toilet thing?  You know, that smelly thing?” 

That does not even sound nice or appealing at all.  My oil warmer was becoming pretty disgusting to me, to be honest. 

I put it in a drawer.  Out of sight.  Out of our smelling range.  Nasty little toilet shaped smelly oil warmer!

The other day I opened the drawer where it was tucked away and saw it there………..all new and clean and sparkly, just like a brand new porcelain toilet.  I got it out, put a few drops of oil in it, plugged it in…………and waited for the reaction from you-know-who. 

It didn’t take long.  “Mom!!   What’s that juice you put in the little toilet smell thing?”

He’s probably told everyone by now that Mom has a little juiced up toilet! 

Our Jackson is so sweet.  Sometimes Aaron pets too roughly, talks too loudly, feeds too “muchly” – although Jackson loves the snacking! – but Jackson always loves Aaron.  Jackson will go to another room when he wants away from Aaron, but he doesn’t hold a grudge and he’s always patient. 

We can learn some valuable lessons from our big, sweet dog! 

If you’ve been reading my blog for any length of time, I think you understand that Aaron is:

1.  Very observant
2.  Very blunt

Those two characteristics don’t necessarily work well together.  Anyone who lives or works with Aaron knows that having thick skin is of great benefit.  A good sense of humor helps, too.

Several years ago I was able to fly home to West Virginia to spend some time with my family, and to also attend the 50th Anniversary Celebration of Johnston Chapel Baptist Church.  Mom and Dad raised us in this church, and we have many special memories of our time there.  My brother pastors there now. 

Anyway, during that visit my brother and my three sisters and I gathered around my dear parents for an impromptu photograph.  It’s one of my favorite pictures of the five of us with Mom and Dad.

Now I have to explain that:

1.  All of us are………how do I say it?………….well rounded.
2.  Except for Jan, who is not well rounded…………..in the sense that the rest of us are.
3.  We love Jan anyway.

OK, Jan has managed to remain thin after all these years AND after giving birth to TWO – yes, I said TWO – sets of twins.  It’s not fair – but like I said, we do love her anyway. 

When I received my copy of this picture, I framed it and displayed it proudly.  Of course, Aaron noticed it right away and wanted to look at it.  He and I stood there, gazing down at the picture, and talking about who was there.  Of course, there’s Mom…….and Aunt Mary Beth……..and Uncle John……….and Aunt Jan……….and Aunt Kathryn………….with Grandmother and Granddaddy.  

He pondered the picture for a few seconds longer, thinking, and then pointed to Jan as he blurted out, “So…….what happened to HER?”   

 Leave it to Aaron.  And every time we see Bob and Jan, Aaron will invariably mention that Aunt Jan is thin and you’re not, Mom, and yada, yada, yada……………..I just block it out at that point.   But I do love Jan!!  Love you, Jan!! 

Maybe I’ll hide that picture.

The Sharktopus Film/Food Fest is officially over.  No one could be any happier about that than me;  Courtney;  and Krysten.   Aaron would do it all over again in a heartbeat.

I thought that the Berlin tornado movie last year was bad.  I mean, a German movie dubbed over in English where the English words didn’t match their lip movements and the classic line was “I could hurt you real bad!”…………….was actually a notch above Sharktopus.  And since I didn’t win the Mother of the Year award for Vortex Five………….the Berlin tornado movie actually did have a title………….I am convinced that I will win the 2012 Mother of the Year award for enduring Sharktopus. 

Likewise, Krysten and Courtney deserve Friends of the Year awards for giving up a good chunk of their Saturday to watch this movie with Aaron.  Or maybe a settlement from OSHA for damage done to them related to work……………or hazardous duty pay…………..or at least a pat on the back!!

Those young ladies are amazing, really.  They love Aaron and they came all pepped up and happy, ready to have some fun.  Aaron just wanted to know what size pizzas I was ordering and how many.  I surprised him with the bread sticks, which we caught him trying to put in his pocket before I grabbed them to put away with the little bit of leftover pizza that somehow we managed to rescue before he scarfed it all down. 

He’s worse than Sharktopus.

We decided to eat the pizza and bread sticks before the movie, as well as the Fruit Pizza cookies that Krysten brought.  Yum!!  We couldn’t put it off any longer, though – it was finally time to watch Sharktopus.  Of course, Aaron had to homestead in his chair, getting up repeatedly until he had everything just so-so.  His blanket, his slippers and slipper socks (yes, both!), his clock, his bag of tostito chips, his crumb bowl, his napkins, a band aid that I had to put on his finger, and I don’t know what else.  Sometimes not knowing is easier.

Sharktopus was beyond awful.  It was predictable with terrible acting, no plot worth mentioning, totally unbelievable story line, absurdly ridiculous special effects………….shall I continue?  And Aaron loved it!  He kept asking us if we liked it and what did we think of this scene and that scene, of this comment and that comment, etc., etc.  Sharktopus is 89 minutes long and we were counting every single one of those minutes.  Riveting……….absolutely riveting. 

At the end of this classic movie, when Sharktopus is blown to bits……….sorry for the spoiler for those of you who will plan to waste 89 minutes watching this movie……………there is an unforgettable line when the girl says, “Do you think that Sharktopus will come back?”  And the guy says, “That only happens in the movies.”  Wow.  Deep.    And I hope it is only in the movies because I WILL not buy or watch that one.

There was a trailer before Sharktopus played that showed another first-class ScyFy movie.  It’s called Dinocroc vs. Supergator………..I think.  I am so hoping that Aaron doesn’t notice or research this movie, even though I was very intrigued by the trailer and I talked about it.  What was I thinking?!  I’ve paid my dues, though.  No more.

We did it!!!!!!

Courtney and Krysten went on their way.  They offered to bring the next movie that we watch.  They are not only sweet…………….they are smart. 

First of all, I do not want to be embarrassing or demeaning to Aaron with this post – but there is a facet of Aaron that is very interesting.  I was reminded of it this morning when he came downstairs.  I could tell that he didn’t have his usual bounce.  He was somber and his eyes showed an element of fear.

“Mom,” he quietly said, “the toilet upstairs is stopped up.”  I understood, then, why Aaron was so quiet and withdrawn.  He has always battled a fear of toilets.  Yes, big and loud Aaron is afraid of toilets.  And he is even more afraid of stopped-up toilets.

I probably unknowingly created this monster – or at least contributed greatly to it.  The year was 1987.  Gary was in the military and we had enjoyed several years in Colorado Springs, our first duty assignment.  In May of 1987, he traveled to Germany to begin his new flying assignment there.  Aaron, Andrea, and I had to wait until Gary got temporary quarters, at least, before we could join him.  That didn’t happen until August, so in August we  moved to Germany. 

We had only been there for a few weeks when Gary had to go to the field for several weeks.  There we were, living on the fourth floor of a huge building full of temporary quarters while we waited for our permanent housing to become available.  Surroundings there were a little drab and sparse, to say the least.  I didn’t know many people; couldn’t drive yet; had a 2 1/2 year old and a 1 year old; the washers and dryers were way down on the basement level; etc., etc. 

The morning that I woke up and said goodbye to Gary was a lesson in having my own personal pep talk, as well as leaning on the Lord.  I told myself that I could do this – no problem!  Soon I heard Aaron and Andrea giggling, so I walked in their room to find this:

Not the best start, but what can you do – except laugh and take pictures?!  Anyway, in the midst of all this stress I decided that I may as well begin potty training Aaron.  I had waited long enough during our moves and upheaval, so why not now?  I had gotten him some cute little GI Joe underwear and proceeded to fill him with excitement about our new potty-training venture.  “Look at your new GI Joe underwear, Aaron!!  Won’t this be fun?!”    “Look at you, such a big boy in your GI Joe underwear!!”  And on and on I went.

Soon after he started wearing his GI Joe underwear, of course, he pooped in them.  No big deal, I thought.  I knew that I could just swish them around a little in the toilet, put them in the underwear pail, and we’d be good as new.  But I never thought about the difference in American and German toilets.  German toilets are eco-friendly.  They have a shelf, then a drop-off, and then just a tiny little bit of water below the drop-off.   To make this design effective, the toilets have an extremely strong suction when you flush.

OK.  I stood Aaron by the toilet, took his special and wonderful GI Joe underpants off, and soon realized that there wasn’t enough water in the toilet with which to clean them.  I decided to hold them down in the little bit of water below the shelf, flush, and let the flushing water clean them off while I held them.  I was feeling very smart as I reached over to the handle and flushed, with Aaron standing there watching his very smart mother’s every move as I held his very special GI Joe underwear down in the little bit of water. 

One thing I hadn’t counted on……………..the suction.  The very strong suction.  It ripped Aaron’s special GI Joe underwear right out of my hand and sucked it down the toilet, never to be seen or heard from again.  I can still hear that suction sound.  I bet Aaron can, too.  Poor little guy!  He stood there staring down in that toilet, eyes huge, and speechless with fright. 

From that point on, Aaron wanted nothing to do with any form of toilet or potty chair.  He’d look at me as if to say, “Do you honestly think I’m going to sit on that monster?!”  Couldn’t say that I blamed him.  Potty training him took a very long time.  The autism certainly didn’t help, but the monster suction toilet that ate his special GI Joe underwear was not a bright spot in our potty training journey.

Aaron’s lifelong fear of toilets is legendary in our family.  We have some funny stories of how he’s behaved over the years in public toilets, trying to stretch his arm out to flush while running out of the stall as fast as he can.  He does much, much better now but still has a hesitation around these contraptions.  And like this morning, if it’s stopped up then I must fix it right away.

So I asked him this morning, “Aaron, do you want me to fix it right now?”   He said yes, and I knew it couldn’t wait.  I asked him, actually, if he would be OK if I worked on it later, and he got “that” look as he said no, that he wanted me to do it now.  No need to question him further, or make him feel bad for being fearful of the stopped-up toilet. 

And no need to expect him to help me or to be anywhere near the bathroom as I plunge and flush.  He’s as far away as he can be, probably remembering his special GI Joe underwear and hearing that awful sound. 

He and I do NOT miss German toilets!

For any of you who are interested……………..and I can’t imagine, seriously, why you would be………….Aaron is now in possession of the infamous Sharktopus movie. 

It’s another of those “Have we done the right thing?”  moments that Gary and I seem to have so many of with Aaron.  Well, anyway, we did do it and what’s done is done. 

Aaron is very happy and wants to share his happiness with others.  Spread some high culture around, you know?  And so he has invited some of the staff from Paradigm over on Saturday to watch Sharktopus with him.  Krysten and Courtney actually bit…………..pun intended (sorry)…………..and therefore on Saturday at lunch there will be a showing of Sharktopus in our family room.

Gary and/or I will probably be drug into this showing, too………….another pun…………..this is how I survive, so please understand.

I will order pizza.  Aaron thinks that pizza makes every gathering just perfect and has already been asking me how many LARGE pizzas I plan to order, and where I will order them from, and can we get three LARGE pizzas, and if we get three LARGE pizzas, and the three LARGE pizzas are from Papa Johns, then can he have all three of the garlic butters? 

It’s gonna be one of those days.  I’m not sure I’m up to handling both a food fest and a fish fest………at the same time.   I’m thinking………….pizza sauce and Sharktopus…………..you know?

Krysten was texting earlier and asked if she could bring anything.  Yes!

Barf bags.  

Sometimes when Aaron gets up in the morning, he’ll immediately get on his computer and start playing a game.  We’ve had mornings when he doesn’t want to get off the game, then, to get himself ready to go head out the door and meet his group.  Some mornings have been pretty rough as he’s gotten very grouchy.  And when Aaron gets very grouchy, he can really get VERY grouchy.

So Gary and I started unplugging his keyboard at night, removing it from his room, and putting it somewhere safe and unseen – only to be plugged back in after he was gone in the mornings.  This kept him from that ever-present temptation to get “hooked on a game”, as he says, and possibly become VERY grouchy.

This plan has worked well – but for the past few days, Aaron has wanted us to try leaving it plugged in and give him the chance to show us that he can control himself.  He’s actually done great with this arrangement for the past few days, either not getting on the computer at all or getting on for awhile but being willing to quit the game and get ready without becoming VERY grouchy.  He has wanted to show us that we can trust him.

Today he had a harder time removing himself from his game, however.  He didn’t become VERY grouchy or even a little grouchy, though, which was good.  However, he got off the game rather late and had to really rush to get everything done.  He was worried about my reaction and decided he needed to explain himself.

Mr. Precise Aaron said, “Mom, I got up early……..at 6:59!!  What was I supposed to do?  I HAD to get on the computer!”

No, Aaron – no one was holding a gun to your head, telling you that you HAD to get on the computer.   And I don’t mind you playing for awhile but I want you to get off in time to get ready.

He was still worried about the situation.  Then he asked, “So…….did I lose my trust?”

Ah, Aaron, you do have a way of expressing yourself.  Did you lose your trust?  Somehow phrasing this question that way gives me pause and makes me think.  Aaron has “lost his trust” as we’ve struggled at times with him not telling us the truth, or cheating when we play Skip-Bo, or hiding money in his desk so he’ll have more to spend the next day.  Just this week I found out that he had once again done the hiding trick with his money. 

Strange…………..no matter the level of disability, the innate tendency of us humans is to sin.  That’s what it is……….plain old sin from our plain old sin natures.  So instead of correcting Aaron’s phrasing, I used it to try to tell him how the way he hid his money and then lied about what he bought while bowling did make him lose his trust.  Maybe he’ll understand it better if I speak in his terms. 

Mom and Dad are hurt, Aaron, when you lose your trust.  But more important, so is God. 

Aaron listens, hangs his head, and thumps downstairs to get Jackson a bone and grab his huge bag of Skittles to take to Paradigm.  I wonder if he’s learned his lesson.  In all reality………..probably not. 

Sometimes I don’t, either.  But once again, God continues to love……….and so do I.

Aaron was full of energy yesterday when he returned from his group.  “Mom!  Paradigm bought us pizza while we were at the bowling alley!” 

That’s great, Aaron!  Did you eat some?  “Yeah, I ate some!”

So I guess you didn’t spend any money, then?  “No, I spent my money on some chicken strips!”

You ate chicken strips AND pizza?   He confirmed that he had.  Wow!

Therefore, I assumed that he wasn’t hungry and so didn’t call him down for supper.  He has a sense, though, about when Gary and I just sit down to eat…………because there he came, clomping down the stairs to join us.  “Aaron, aren’t you stuffed from pizza AND chicken strips?  I didn’t think you’d want to eat.”

But noooooo………….he wanted to sit with us……………not to eat so much as to talk.  The eating was a sideline, but while he’s there he may as well, right?

So he grabbed a bowl for his salad and another bowl for his soup and several utensils because he can’t mix and match those.  And several napkins………..one will never do.

He wanted to tell us about his day – other than pizza AND chicken strips at the bowling alley.  He had news about his friend.  “Hey, ______’s mom brought muffins to Paradigm today!”

Really?  What kind of muffins were they?   “I don’t know.”

Well, did you eat one?  “No, but they had chocolate swirly stuff on top.  And those sprinkle things.”

They must have been cupcakes with chocolate icing.  “Yeah, that’s what they were!” 

So was it _____’s birthday?  “I don’t know.”    Did they sing Happy Birthday?    “I don’t know.”

This coming from the young man who can hear Gary and I having a conversation from two floors above, or who can spy a cigarette butt from across the Wal-Mart parking lot……………so he can run and try to pick it up, just to hear me tell him to stop!

Anyway, Aaron didn’t seem to know much about why there were cupcakes – or muffins – or whatever.  But what he did find out and wanted to tell us was:

“________ said that she was born in the jungle!!”

Yes, Aaron.  ________’s mother told me that she was born there.

“I bet she’s African!!!”     (Check out my blog – Where is He From? – to better understand)

No, Aaron, ________ is not African.  She’s from South America.  Her mother went down and adopted her soon after she was born. 

And then the question of the evening, as Aaron paused for thought.  “So what is her species?”

Gary and I were speechless for a second, long enough for Aaron to answer his own question.  “I bet she’s jungle people!!”

Oh good grief, Aaron!  You’ve been reading too many science books or watching too many Sharktopus-type movies!    ___________ is a human being!!!!!

And of course, he knows that.  He gets his terms all mixed up but sometimes it sounds pretty awful, you know?  He’s clueless as he goes on merrily talking about whether they swing on vines there in the jungle, etc.  He thought that this jungle story was extremely fascinating and put his friend in a whole different light. 

I just hope that whatever he says from this point on isn’t offensive, because he sure can be just that without even knowing it.  Maybe today there will be two more food choices to occupy his mind instead of jungle stories!