What Was I Thinking, Indeed?!

I know that as parents we often wish we could go back and change some things.  We wish that we could say something we didn’t say, or take back something that we did say.  This is how I am feeling tonight……….kicking myself for something I said to Aaron.

I told Aaron that I would watch War of the Worlds with him.  Not that I might watch it.  Not that I would think about watching it.  Not that I would see if I could watch it someday.  I told him flat out that I would watch War of the Worlds with him.

What.   Was.   I.   Thinking.

Aaron is literal.  Aaron doesn’t forget literal comments.  My comment was literal.

He and I were watching Wheel of Fortune.  Well, I was watching Wheel of Fortune.  Aaron was busy shelling peanuts, happily dropping the shells into his bowl (of course), chewing the peanuts thoroughly, and trying to slyly brush any stray shell pieces off into the floor and then further brushing them under his chair.  Shell, drop, chew, brush…….shell, drop, chew, brush.  Over and over. 

When he wasn’t chewing….or often when he WAS chewing……..he was talking about War of the Worlds.  Every aspect of the spaceship and the aliens was being discussed as I tried to watch Wheel of Fortune.  I’ve become quite attached to this game show.  Aaron is mostly attached to the snacks he eats during this game show.  Anyway, I was halfway answering his questions as I watched Vanna turn the vowels and “constanents,” as Aaron calls them. 

I told him a few days ago that I remembered (sort of) watching War of the Worlds when it came out several years ago.  I told him that I thought it was a good movie as far as alien movies go.  Aaron thinks that ALL alien movies are good, but he knows that I don’t agree.  So for me to say that I thought War of the Worlds was pretty good is like throwing gas on a fire.  Aaron is on fire!  He thinks that not only should I remember every detail of this movie, but that I should want to talk about it over and over and over again. 

As he kept his War of the Worlds monologue going during Wheel of Fortune, I heard him ask something about us watching this movie together again.  Before I knew what was happening, the words had come out of my mouth.  “Yes,” I heard myself say, “I’ll watch War of the Worlds with you.” 

When Aaron’s head shot up, I knew that I was in over my head.  I had made a definite commitment.  I had said this thing that I could not take back.  Aaron had processed my comment and filed it away before he even popped the next peanut in his mouth. 

Oh boy.

It didn’t take long for the inevitable to start happening.  “So Mom,” Aaron excitedly said, “when do you want to watch War of the Worlds?”

I don’t know, Aaron. 

“How about tomorrow night?” he asked,

Probably can’t do it tomorrow night, but I’ll let you know when I can.

“OK,” he said.   Pause.  “When do you think you can?”

Aaron, I’m not sure but I’ll let you know.

Thankfully, we were interrupted by a visit from friends…….but I eventually did have to go back into the family room, where Aaron was still busily eating those blessed peanuts. 

There was peace for a minute or two.  Then…….”You want to watch War of the Worlds, right?” 

Right.

“Do you know when?”

No, Aaron, I’m still not sure about that. 

“I was just wondering,” he said.

Soon he went downstairs to discuss something with Gary, and then when he came back upstairs and turned the corner into the family room, he interrupted my basketball game with, “Mom, you just let me know when you want to watch War of the Worlds.”

Yes, Aaron, I will.

Thump, thump, thump up the stairs he went.  Not even two minutes went by.

Thump, thump, thump down the stairs he came.

“Mom, we can watch War of the Worlds some night.”

Just this flat statement.  And I just as flatly answered that we would watch War of the Worlds……..some night. 

“You don’t know when?”

I wanted to tell him that if he didn’t hush, there was going to be a war in our world.  But I didn’t.  My mouth had already gotten me into too much trouble tonight.  I just told him yet again that I did NOT know when. 

Thump, thump, thump……..and I remembered that I needed to do a couple things in the kitchen.  The peace I was enjoying was short lived.  Did I hear………yes, I did………thump, thump, thump. 

“Hey, Mom!  Chapter six in War of the Worlds is my favorite chapter.  Is chapter six your favorite?”

Aaron, I have no idea if chapter six is my favorite.

“Well, you should watch it to see.”

Touche, Aaron, touche.  That was clever. 

And don’t you know it wasn’t long before I was sitting on the edge of Aaron’s bed, watching the big scene from chapter six that made it Aaron’s favorite chapter? 

 

When we DO watch War of the Worlds, will he let us fast forward through this scene in chapter six since I just watched it with him?  Not likely.

I also sat there and watched how the grenades blew up the alien ship and killed the alien…….like reading the ending of the book first.  Can this count for watching the whole movie?  Not likely.

As we got ready to play a quick game of Skip-Bo later, he told me that a woman did such-and-such in chapter 10, and this happened in chapter 22, and something else in chapter 19.  Good grief.  How does he remember all that?

The same way he remembers that I made one brief little comment about watching War of the Worlds and I forgot to insert the word “might”…….or “maybe”………or “perhaps”……..

Tomorrow he has a dentist appointment.  I might have 15 minutes of peace.  Maybe 15 minutes of Aaron not being able to talk about War of the Worlds. 

Perhaps. 

 

Little Is Much

We live in a world where bigger is usually seen as better.  A bigger house; bigger job; bigger bank account; bigger TV screen; bigger stores; bigger selections; bigger sales; bigger churches; bigger buildings; bigger budgets.  It’s not that these things are bad, but I was thinking this morning about how God likes to use the little.

A little couple in the Garden of Eden; a little Joseph being thrown in a pit; a little baby Moses in a basket; a little David watching sheep and slinging little stones; a little Moabite girl named Ruth; a little Jewish girl named Esther; a little widow with a little flour and a little oil; a little servant girl of Naaman’s wife; a little young man named Daniel; a little town of Nazareth; a little couple named Joseph and Mary; a little dirty cave; a little carpenter family; a little boy with little loaves and fishes; a little woman of Samaria; a little group of disciples; a little man named Paul; a group of little churches; a little man named John banished on the little isle of Patmos………

It’s a pretty big list of little things and it isn’t nearly complete.  We could add some things today. 

A little mommy singing little songs to her little children.   A little daddy reading from a little Bible as they gather around a little bed at night.

A little smile to a little stranger.

A little card in the mail.

A little phone call to encourage.

A little hug.

A little prayer.

God uses the weak, the little, to confound the mighty.

Let’s remember the words to that old hymn:  Little is much, if God is in it.

God wants us to give Him our little and watch Him use it in a big way. 

Back to Normal, For Now

This has been a wonderful weekend for Aaron, especially compared to last weekend when he was feeling so horrible with all the seizures he had.  And the weather has been pretty and warm, so he was able to get outside for his relaxing time in the mulch.  Sorry for the picture through the screen.  Aaron is getting a little tired of all the pictures that Mom wants to take, so I didn’t let him see me taking this one.  J 

He enjoyed a trip to Dillon's, where we had fun looking at pomegranates and kumquats……..and where he got to buy some of his favorite croissants (pronounced as croysants if you’re Aaron).  His eating has improved over the course of this week, but it’s been slow in coming.  And he’s been so slow all week in every way – in his movements and his speech and his eating and his thinking. 

He’s getting tired of us mentioning anything remotely to do with his health or with how he’s feeling.  Last night he got his bed ready in the meticulous way that he does.  There’s Mr. Snake, who will be moved under the covers beside Aaron when it’s time to go to sleep.  This is Aaron’s pre-sleep set-up that he has as he reads his Handy Answer Book.  He changes everything when it’s time for actually sleeping.  Routine, routine, routine.  So anyway, I mentioned something last night before I left his room that made him think I was going to talk yet again about how he was feeling.  He said, “Stop with all the how I’m feeling stuff!”  I think he’s on overload and ready to get back to normal.

He clipped all my coupons today even though there were lots of them, and he did it without taking a break.  He’s back to clapping loudly when he watches television, especially Wheel of Fortune.  Man!  Tonight I had to tell him to stop, but it felt nice to actually hear him clapping, if that makes sense.  He’s been yelling as he watches a movie in his room, and talking our ears off about the latest alien plot that he’s trying to figure out.  Annoying sometimes?  Yes.  But right now it’s a welcome sign that Aaron is back to his normal self, and we’re thankful.

We took a walk around our neighborhood circle this evening.  It was a beautiful evening for a walk, so we stopped by the lake and snapped a few pictures.  When I compare last week’s picture, taken at about this very same time of day as today’s shot, I’m very thankful for the huge difference.  

 

Aaron and I will see his autism doctor tomorrow.  We’re continuing to pray for wisdom and direction as we talk to her, and then to Aaron’s Epileptologist in February. 

And Aaron……..he’s planning where we will eat tomorrow for lunch, when he’s not talking about aliens.  I was so bogged down in aliens as we took our walk that I had to re-direct him to the first thing that came to mind, which was naming various restaurant possibilities for tomorrow.  But he’s talking, which he can’t always do after some of his seizures, so again I’m thankful. 

Sometimes the hard times change our perspective on thankfulness.  What we took for granted in the normal times becomes huge when it’s taken away, and if it’s restored then we just well up with thanks.  I know myself, and I know that I’ll end up taking things for granted or I’ll get irritated too often again as I tend to do. 

Like yesterday……when Aaron was eating lasagna………and I stepped out…….and Jackson the lucky Great Dane had a nice piece of lasagna for his lunch. 

Aaron!!! 

Footprints in the Water

Israel was in bondage in Egypt when God raised up a deliverer, Moses.  The people watched with wonder as God performed miracle after miracle.  A staff that turned into a serpent;  water turning to blood; frogs; gnats; flies; locusts…..   So many signs and wonders God performed.  So many tangible evidences of His might and power.  Then at Passover, the application of the blood on the door posts, the deaths of the first born of the disobedient – more evidences of God’s working.  He was there with them, unmistakable, and working among Israelites and Egyptians alike.  The proof was everywhere to be seen.

Finally Pharaoh let the people go.  They left Egypt quickly, trusting in God’s power to protect them.  God led them by a pillar of cloud during the day, and at night a pillar of fire.  This was just even more evidence of God’s plan being fulfilled for Israel, and more proof to these weary people that God was leading them forward.  They were progressing onward, yes, but they had no idea of what was just ahead.

God told Moses to have the Israelites turn back from where they were and to encamp by the Red Sea.  I wonder how many Israelites had serious doubts about this decision that God had made.  Still they were safe, though, because there were ways around the sea.  That is, until they looked out on the horizon and saw the hordes of Egyptian soldiers bearing down on them.  There was no way of escape now.  They were surrounded by water that was impassable, and by soldiers that were impassioned, and by a situation that was impossible!

The people of Israel feared greatly at this reality.  Gone were the thoughts of locusts and frogs and water turning to blood.  Gone was the trust that we think they should have shown in the God Who had led them this far by performing so many miracles.  All they could see was the hopeless situation all around them, and the doom they knew was impending.  They cried out to the Lord and to Moses in their fear and anger.  “What have you done to us in bringing us out of Egypt?  It would be better for us to serve the Egyptians than to die in the wilderness!” 

Moses replied, “Fear not; stand firm, and see the salvation of the Lord which He will work for you today.  The Lord will fight for you and you have only to be silent.”  What?  Be silent?  We’re all going to DIE!!!!  Those are my words because I imagine I would say something like that in this situation……which is why I was so struck the other  morning as I read Psalm 77:19:  “Your way was through the sea, your path through the great waters; yet your footprints were unseen.”

God’s footprints were all over the place as He brought plague after plague upon the people of Egypt.  It’s comforting to have footprints to follow when you’re going through a hard time, even if you’re not exactly sure where they will lead.  The Israelites never dreamed that God would lead them to the Red Sea and then leave them there as they were surrounded by the blood thirsty Egyptians.  They forgot God’s power as they looked at their seemingly impossible situation.  They forgot to trust when God’s footprints were unseen in the water.

Yet God’s way for Israel was through the sea.  His path for Israel was through the great waters.  Sometimes that’s where my path leads, too – up against situations and events that are deep with trouble or fraught with questions.  God wants me to venture forward, trusting in Him even when I can’t see his footprints in the water.  You see, it’s not the footprints I need to be trusting.  It’s God Himself that I need to lean on with faith and obedience. 

And I can fully claim the promise of Isaiah 43:2:  “When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you.”

 

 

Let's Get This Working!

Aaron has had epileptic seizures since he was in the first grade.  While I can’t say that we ever get used to seeing him have a seizure, we are used to the fact that he has seizures.  They’re all difficult to watch, though – very difficult.  For the past few years, the majority of his seizures are at night.  On a rare occasion he might have one during the day while he is napping.  We keep a baby monitor on our nightstand so that we can hear him if he seizes during the night.  We just got a new monitor with a talk button that we can push down and then talk to Aaron in his room.  At first he didn’t like this.  He said that we were spying on him.  But now he thinks that this is pretty cool, and on the occasions that I have talked to him, I can hear him chuckle.  

His seizures have been spaced weeks apart for quite a long time.  We’ve become comfortable with this level of seizure control.  But over the past two months or so, his seizures have become more frequent.  Now they have been occurring every 10 to 12 days.  This isn’t good for many reasons, and of course we wonder why there is an increase.  We recently put him on a medicine to help control some of his impulsiveness and anger outbursts.  We wouldn’t do this unless these issues – these behavior issues – were interfering with his life and happiness………and they do just that.  However, many of these drugs can also lower the seizure threshold in those already prone to having seizures.  The medicine that Aaron takes only has a .1% chance of having this side effect.  We hoped that it wouldn’t increase his seizures.  We still don’t know if it is.  We are now removing him from this medicine, will see his two specialists soon, and will have many decisions to make.

Poor Aaron.  Sometimes I feel like he’s a pawn in this great guessing game of medicine controls.  It’s a huge responsibility for us as parents, as any parent of a child with medical issues can attest.  Aaron’s health and safety and happiness are our primary concerns.  It’s just very hard to know if we’re going in the right direction to achieve those aims or not.  What helps might also hurt.  There is so much weighing to do…….so many decisions to make. 

Early this past Sunday morning I heard that awful sound on the monitor by our bed that told me Aaron was having a seizure.   It was just after 3:00 a.m.  Then again he seized almost exactly 2 hours later, and again 2 hours after that.  3:00…..5:00…….7:00.  His poor body.  Aaron’s seizures are hard, and sometimes last for close to 3 minutes.  He made his way down to the kitchen sometime after 8:00 that morning, all groggy and with a terrible headache.  I had him take his pills, but right away he laid on the couch and told me he felt sick.  I ran for the trash can and he promptly threw up all his pills.  He spent the entire rest of the day sleeping, throwing up when he was awake, and managing to keep down a little ginger ale.  Did he have a stomach virus along with the seizures?  Sometimes he throws up after seizures, but this was extreme.

 

At 5:20 that evening, Gary and I watched him have another seizure.  Afterwards he was totally limp, and later when he awakened some, he couldn’t speak.  That’s always a hard thing to see.  At 10:00 he took his night pills, threw them all up, and later was able to finally keep a second set of pills down.  And he slept all night…………no more seizures and no more throwing up.  I was amazed at all that sleeping! 

On Monday morning I went into his room several times to check on him.  Finally, I made some noise and he woke up, giving me an Aaron smile as he stretched his arms and legs.  He made it out of bed, and I had him scoot down the stairs on his bottom while Gary stayed in front of him to catch him if he fell.  He was just too unstable to walk down a flight of stairs.  He was much more coherent and alert, though still slow.  I knew he was hungry after not eating for 36 hours.  He said that some applesauce sounded good, so I fixed him some and watched him as he slowly ate……..and stared……..and leaned over………..and ate some more.  Feeling that he was tired, I told him that he could take a break and have some more applesauce later.  “How ‘bout I do it now?” he asked.  So hungry Aaron ate more applesauce, of course, and then drank coffee.  He was feeling better by the minute!

He had a good day……..slow and quiet, but very good compared to the day before.  That evening I asked him if he wanted a haircut and he quickly agreed.  I know it felt great to him to get out of the house, and he always loves getting a hair and goatee trim.  Then we walked down to Papa Murphy’s and got his favorite pizza for supper.  Later, he very slowly ate his piece of pizza.  I commented to Gary that I could tell Aaron didn’t have an appetite because of how slowly he was eating and because he had said he just wanted one piece of pizza…….unheard of for Aaron!  Very softly he said, “I have an appetite.”  And I assured him that it was fine to not want to eat much.  Then he reached for another piece of pizza, which I knew he didn’t want, as he repeated, “I have an appetite.”  It’s OK, Aaron.  You don’t have to eat.  And later, as he was settled in his chair to watch Wheel of Fortune and I was cleaning the kitchen, out-of-the-blue he said, “Mom!  I have an appetite.” 

Yes, Aaron, we’ve established that.  And I’ll know next time not to accuse him of losing his appetite!

He’s been doing fine yesterday and today.  He went to his day group both days.  He’s still very slow, almost like he’s in a daze.  He doesn’t have his usual bounce and hasn’t been talking much.  As I’ve said before, this quietness is a side of Aaron that is always concerning. 

Last week he came home as the proud owner of a new Whoopie Cushion.  I believe one of his day staff won it at All Star Sports and gave it to Aaron.  He hasn’t wanted to open it or to use it.  Does he remember the last time he had one?  We all laughed and laughed together as we each sat on it, including Aaron.  But then Aaron put it on the floor and from a standing position he sat on it with full force.  It exploded!  And we all nearly died from laughter.  Maybe Aaron is now cautious about his Whoopie Cushions after such an explosive event.

 

Last night as I helped Aaron get his bed ready, he reached over on his bookshelf and held up the still packaged Whoopie Cushion.  “Mom, I hope we don’t get this working!” he said with a smile on his face.  No amount of talking on my part could convince him to get the Whoopie Cushion working.  He tucked it back onto his bookshelf and headed for bed.

Who can tell what Aaron is sometimes thinking?  And I’ve been thinking about that statement today.  I DO hope that we get Aaron and his body working again the way it should………the way that is safe and healthy for him.  I also hope that his fun personality comes back, not in an explosive way but in the amazing way that is so Aaron.  His unique view of life……..his funny comments………his amazing insights.  All of these traits are what make Aaron such an interesting, and sometimes frustrating, person to live with. 

He just came home from his group, immediately coming downstairs to find me.  “Mom!  Barb said I made a new friend today.”  Then he told me about J., whom he hasn’t gotten along with too well.  “J. had some silly putty and he put it over his mouth.  Then it made farting noises!”  Aaron was laughing as he told me, and apparently was laughing a lot at J. as he did this….and J. was laughing as well.  “Those farting noises were funny!”  Aaron said.

I think Aaron’s coming back.  I’ll take it…….I think. 

 

Getting Back in the Groove

I have definitely been out of my groove lately……and when mama is out of her groove, Aaron responds.  Both of us being out of our groove makes for some interesting times around here.  Both of us have been physically down at one point or another since before Christmas.  I was sick before Christmas, the week after Christmas, and again this week with my first ever sinus infection - for which I got an antibiotic that I hope will completely remove whatever bug is in my body for GOOD!  Aaron has struggled with some seizures; a bad sore throat that I shared with him because I’m nice that way; and an upset stomach that caused him to completely lose every bite of his favorite lasagna immediately after he got up from the supper table last night. 

Can we be done now?  I certainly hope so.  Yet I don’t want to complain.  We enjoy very good health most of the time.  And Gary has remained healthy through all this, which has been a blessing. 

Aaron isn’t used to seeing me sick.  I mean, he’s seen me not feeling well but to see me in bed in the middle of the day is unusual for him.  To see me cuddled under a blanket on the couch when it’s dinner time is highly unusual.  And of course, if something affects Aaron in a negative way then he will react.  And his reactions are not of the kind and caring variety, hardly ever.  He would have a very difficult time portraying care for me, although he has done that on occasion with a hug or by sharing a band-aid. 

On Monday, however, when I felt my worst and had been to the doctor, Aaron was at a loss.  This was the day that I was on the couch while Gary fixed Aaron something to eat.  When Aaron walked through the family room, I saw his eyes dart quickly over to my huddled form……..and then look away again just as quickly.  He had that familiar scared look on his face that I’ve seen so often…….the look that tells me he is uncertain and uncomfortable.  He cannot bring himself to express feelings like you and I can, but he must show something………and so he shows a measure of fear.  And also anger. 

I understand this about Aaron but it still puzzles me sometimes.  That evening as he walked several times through the family room, he made some comments or asked some questions.  I don’t even remember what they were, but I remember that he was mad.  I watched Wheel of Fortune with him, which I thought might help, but he was still showing frustration toward me.  Actually, though, the frustration was really aimed at the situation.  Mom being sick and out of commission made Aaron feel insecure.  His insecurity is shown by frustration, which is often exhibited with anger.  That night was no exception.  It didn’t get out of hand but his anger was evident in his tone of voice and his impatience.  I knew to just let it ride and to give him space, not asking lots of questions or trying to engage in much conversation.

Of course, the next morning he hoped that my sickness would mean that I couldn’t drive him to meet his day group, and therefore he would have an unexpected day to stay home.  When I told him that I was feeling better and that I could indeed drive him, he was suddenly wanting Mom to be sick again.  So funny how that works!  Again, Aaron is all about Aaron most of the time.  That night I knew that some one-on-one time with Aaron would mean a lot to him, so we played Skip-Bo……..and he was very happy!  It did us both good to spend that time together, despite his attempts at cheating.  He is quite adept at picking up extra cards or digging under the pile for a card instead of getting the one on top or any number of other cheating techniques.  I don’t dare turn my back on him during a game!

 

Two days later, though, Aaron for some reason had a very sad spell at his day group.  He cried there, wanting to come home so that he could “have fun”, and when he walked in the door at the end of the day he was a mess.  His eyes were swollen and blood shot, his neck red from rubbing his jacket back and forth over his skin, and he continued to cry as we talked.  When Aaron cries, then we know that he is extremely frustrated.  He kept declaring that nothing happened, that his friends were very nice when he started crying, and that he just wanted to come home.  He was somber at supper and for the rest of the evening. 

The next morning, Friday, he came downstairs fairly early.  He was still very quiet, and asked if he had to go to his group.  I said yes, which he calmly accepted – much to my surprise.  We talked about things Aaron likes to do at home and I told him that he should read more than just before bed……the only time that Aaron will read.  He said, “Like now?”  I said yes, and so he went up to his room, soon returning to the kitchen table with his Handy Answer Book and his watch, of course.  Keeping track of time is very important, you know! 

 

This was such an unusual moment!  For one thing, I was clipping some coupons I had hidden from him because he thinks he must clip ALL the coupons, but gets angry when he’s tired of all the cutting.  So I had hidden these and he caught me with them.  He asked about them, but he didn’t insist on doing them himself.  And the other thing was the simple fact that Aaron was reading his book in the morning!!  Not at night before bed, but in the morning……….gladly sitting across the table from me, seriously reading his book, with his watch perched near him so that he could see the time.  It was all very sweet and special to me.

I told Aaron that I would fix him his favorite lasagna for supper, and he was happy about that as we later drove to meet his group.  When he got home, he still seemed unusually quiet and remained so at supper.  He hardly said a word to Gary and I as he carefully took the top layer of cheese off of his lasagna, like he always does………because he saves eating it till last.  He was so quiet that we were a little worried, and then really worried when he didn’t want his salad, which he loves.  And he only wanted one helping of lasagna.  He laid on the love seat after supper, and within a minute he asked for a trash can…….and Gary and I ran, with Gary barely making it in time to hold the can for Aaron to use as he threw up all of his lasagna. 

Well, maybe that explained his somber mood over the past two days and his very quiet demeanor.  He dozed on the couch but didn’t throw up anymore.  The rest of the evening still found him being very unlike himself.  He was happy to go to bed and he slept well all night.

When he came downstairs this morning, his eyes were bright and he had a big smile.  “Mom!” he exclaimed, “I was upstairs watching a movie.  I have been not asleep!”  And I knew that Aaron was back.  He was talkative and happy, and proud of the fact that Mom probably thought he was up in his room sleeping late, but he had “been not asleep.”  I love the way Aaron arranges his words, and I love to hear him talk (most of the time!), and I love to see him happy and chipper.  He has been bouncy today, and full of talk, and he laughs as he tries to whack us when we walk past him.  Typical Aaron!

A while ago I put a load of clothes in the dryer and turned it on.  Right away I heard such a loud racket that I opened the dryer door to investigate.  Soon I found the cause of the noise…….a huge plastic die from a game of some sort.  And yes, Aaron had brought it home in his pocket……….his often bottomless pockets that hold his many found treasures.  And yes, he grinned broadly when I showed it to him and yes, he objected when I told him that he must take it back to Paradigm.  This is all so true to Aaron’s nature.

 

And I thought of how Aaron’s talking and all his noise and clatter are so typical of him………so true to his nature.  I miss it when he’s too quiet.  I don’t like it when he’s serious and somber.  I’ve gotten used to the loudness that is Aaron, and to all the clatter that tells me Aaron is fine and Aaron is being………Aaron. 

I’m thankful that he and I are both feeling better, and that we’re both getting back in our groove.  Sometimes I crave the alternative with Aaron…………quietness……….but I realize it’s not natural and I don’t like it at all.  The breaks I get from Aaron are needed and good, but when Aaron comes home, I want the real Aaron.

Loud clattering and chattering and all! 

The Nightie........Retold

While in Wal-Mart the other day, I noticed that they are in full Valentine’s Day mode.  Candy, cards, flowers, clothing………..which sends a little shiver up my spine.  Not because I’m so wild about all the Valentine’s Day commercialism, but because of what happened when I was in Wal-Mart with Aaron several years ago.  I decided to share this story again because I realize that many of you haven’t read about that little incident.  Plus it’s good therapy for me to write about it……to let it out.  I’m actually not in therapy, but after reading this story you may think that I should be.

Aaron and I did our typical entrance into Wal-Mart on that particular day…….which means that Aaron stopped dead in his tracks in the middle of the crossing as we headed to the entrance.  He then held out both arms, like a policeman stopping traffic, which garnered all sorts of attention and stares.  I told him to stop like I always did, and he told me that he just wanted to be sure the cars stopped, like he always did. 

Once in the store entrance, while I got a cart, I looked over and saw Aaron staring up at the security camera.  He had a huge smile on his face and was flashing the peace sign with both hands, while I’m sure the security personnel were busily trying to ascertain Aaron’s threat level.  Oh brother.  I whisked him on into the store, where I gave him the list of do’s and don’ts as he decided to head by himself to the video section.  It was mostly don’ts. 

Aaron, don’t make the passing gas sound.  And you know why.  People think it’s you passing gas for real, or worse yet, when I’m with you they think it’s ME.  No, it’s not funny.

And no fox whistles.  That could get you in some trouble with boyfriends and husbands. 

And lastly, as he took off down the aisle, I told him not to run.  There he went, walking briskly with both arms swinging furiously and his rear end swaying back and forth.  Quite a sight.

I picked up a few things and then headed over to electronics to pick up Aaron.  He was going with me to the grocery section.  I saw him looking at videos, and after a brief look at whatever new movie he wanted, I took off down the center aisle with Aaron close behind.   I wasn’t paying much attention to what was displayed beside us as we walked………right there on the side of that main aisle. 

Valentine nighties.  Lots and lots of little nighties.  Red ones……black ones…….animal print ones.  Some with feathers, even, and others with sequins.  My internal alarms should have gone off.  You see, Aaron is attracted to the unusual……..and these tiny nighties were most unusual to him.  But no, I was focusing on peanut butter and tea bags and frozen mixed vegetables…….not on little, very interesting Valentine nighties.

But Aaron noticed them.  Oh yes, he did!  Something else I didn’t notice was that Aaron had lagged behind me……..quite a ways behind me.  Suddenly I heard his unmistakable loud voice saying, “MOM!”

I turned around in the middle of that very wide aisle full of very many people…….and there stood Aaron, a huge smile on his face……..and holding up a little tiger print nightie.  A very tiny tiger print nightie.  Things seemed in slow motion from that point forward.

“MOM!” he repeated.  “YOU NEED THIS!!!!”  

I just stood there, sure that most of the people passing me were thinking, “No, young man.  Your mom does NOT need that.”

I wished that I was Korah.  You remember Korah, of Old Testament fame, who sinned against God and was swallowed up by the earth as punishment.  I would have welcomed that.

But there was no escaping my large, very happy Aaron standing there holding this unique very tiny tiger nightie way up high for me and all the other hundreds of people there to see.  OK, there weren’t hundreds but I sure felt like there were.  What could I do but tell him to hang it up, and turn and walk once again toward the groceries?  I couldn’t wait to stick my head in amongst the frozen vegetables to cool my flaming face.   

Aaron couldn’t understand my embarrassment at all.  He thought that this was a very funny moment but not awkward.  Why wouldn’t mom want to look at this cool tiger print little thing?  I just told him to trust me on this, and I was very thankful when we were headed home. 

No way was I going to tell him that I liked the red one with the feathers better.

When Questions Come

I’m sitting at the kitchen table on this fairly early morning, listening to the sounds of my day beginning.  It’s really a quiet morning, almost as if the outside fog is buffering all other noise.  I hear our Great Dane let out an occasional groaning sigh, so typical of him.  He just ate his breakfast and ran outside to do his business, so he is once again lying on his big pillow with his ever-present blanket close by his side.  I hear the swishing of the washing machine as it begins to wash the load I just piled into its tub.  I hear the quiet sound of the furnace running on this cool morning, and I am thankful for the privilege of heat for our house.     

There is another sound I hear, as well as one that I hope I do not hear.  I hear the sound of Aaron’s soft breathing coming from the couch where he is now lying.  Every little bit I hear the soft fluttering sound of an almost-snore coming through his lips.  His head is on his very fluffy black pillow that he often perches behind his back when he watches TV or when he reads in bed at night.  And he is all snug under his new animal print blanket that he received from Paradigm for Christmas.  This is his new favorite blanket that has now been added to his growing list of bed covers at night……..and it is put on his bed in just the right order, which is on top of all the other covers so the fun animal print is visible.  I hear his slurred speech as he just stirred and asked about his coffee, and then was asleep again in seconds.  His throat is swollen and sore from probably the same virus that I had after Christmas, so I empathize with his pain and discomfort, and I wish he could have his warm coffee.

The sound I do not want to hear……..and the reason he is not drinking his coffee………is the sound of another seizure.  Aaron had two hard seizures during the night.  He has a bad headache right now, is very slow both physically and mentally, and will probably sleep for quite some time.  Yet his seizures usually occur in his sleep, and so I sit here listening and waiting and praying that he does not have another episode. 

I’m amazed at Aaron’s strength……at his ability to even get out of bed and make his way downstairs when he obviously feels so awful.  I’m amazed at his desire to keep his routines going even though he can barely stand.  He really wants to begin his day…..to get out of bed……to shower and drink his morning coffee…..and to talk, of course!  But none of this is very possible for him on this morning, so he clumsily made his way over to the couch and lay down.  I got his fuzzy pillow and animal print blanket, and he was asleep before I finished wrapping him all up in soft warmth. 

I don’t know why Aaron has to suffer like this.  His sore throat kept him from going to a basketball game last night with Barb, and that made me sad.  Now he also has seizures piled on top of feeling miserable anyway.  It’s very easy for me this morning to ask those ever-present questions……..the ones that lurk near the top of my mind on days like this.  Why does Aaron have to suffer?  Why is life so hard for him?  Why are things so complicated?  We’ve added a new drug to help with Aaron’s autistic behaviors, but is this why his seizures are increasing?  Now what?  One thing helps but also hurts, so here we go down this path again.  It can be overwhelming and frustrating and deeply hurtful to watch Aaron endure all of this. 

From the time our children are growing in our womb, our hearts are entwined with theirs.  We cannot, and would not, separate ourselves from their pain and their trials……but also from their joys and triumphs.  It’s just that poor Aaron doesn’t have a lot of joys and triumphs, it seems.  At least that’s how I feel on a day like today.  The poor guy is even color-blind! 

Yet I know from years of experience that when Aaron is suffering, like today, that I need to especially guard my heart.  It’s easy to keep trudging down that path of defeat and unanswered questions.  I will probably never know until eternity why Aaron suffers.  Why does Elijah, and so many others, suffer on such a great level?  Why did Paul, and Ben, and Katy not live past their young adulthood?  I could name so many families who are suffering from ongoing hurts and trials.  We all can.  Why?

Just like Job did, we question God sometimes.  I am convinced that God wants to use Aaron to point me more to Him.  To learn to give God my complete trust and my praise even on these days when Aaron is seizing and has a bad sore throat and wasn’t able to go have some fun at a basketball game like everyone else does.  Oops, there I go again……….letting my mind focus on the sad and the negative instead of on God. 

I opened my Bible here at the kitchen table while listening to Aaron’s sleeping sounds.  I sometimes just open it and see where my eyes land, and what God has for me in those verses.  This morning it was Job 9, where Job talks about God’s power revealed in nature but also questions God’s bruising and wounding in his own life.  Job couldn’t figure out what God was doing at all, and neither can I.  Oh, I know what God was doing with Job because I have the whole picture as written in the book of Job.  But I don’t see that whole picture in my life as it relates to Aaron’s sufferings. 

Reading Job 9 today reminded me of how God led me one morning in a hotel room in Missouri to read Isaiah 40.  Reading those verses about God’s mighty power in creation impacted me more than anything had in a long time.  I was reminded that this powerful God Who holds the oceans in His hand can certainly heal Aaron……..or do any number of other things that would mean a lot to me.  Yet He is also worthy of my complete trust when He does NOT choose to heal or to rescue immediately…..or ever.  I trust God because I know Him, even when I don’t understand Him.

Those surrounding chapters in Isaiah are rich with promise.  God does not become weary; His understanding is unsearchable; His strength is there for me; He will hold my right hand; He tells me not to fear.  He doesn’t say I won’t hurt or that I won’t question.  But my thoughts are to not dwell on those questions as much as they dwell on the One Who has the answers……….revealed to me now or not. 

So I wrap up my heart with God’s promises just as I wrapped Aaron up in his special animal print blanket this morning.  Once again I face my hurts and my pain for Aaron, propped up with God’s ever present love and his strong arms that are always under me.

Like Job I can say, “I have heard of You by the hearing of the ear; but now my eye sees You.” 

Experience does that, you know.  We can see God in ways we never have before. And that kind of experience is never wasted.    

Can I Talk?

It seems that Aaron has come down with my sore throat virus that I got after Christmas.  That was a wicked sore throat for me, so if Aaron feels the same then I feel very sorry for him.  I also feel sorry for him because he was really looking forward to going with Barb, one of his day group staff, to watch her daughter play in a basketball game this evening.  Now he can’t go and he’s very disappointed.

Aaron doesn’t care about sports, but he does care about several other things.  He loves Barb and so spending time with her outside of his day group was something he really wanted to do.  She also told him that there was a concession stand there, which he knows means food, and so he had already asked me if I would send more money with him today.  “Lots of money!” he said yesterday.  Lots of money for lots of food, which fits into Aaron’s agenda very nicely.  Now it’s applesauce and hot tea with honey for him.

The other thing that Aaron cares about is talking.  Talking and eating are his two top priorities in life.  Aaron is definitely not a non-verbal adult with autism.   Talking, and having listening ears around him, is of utmost importance to him.  Therefore, I should not have been surprised, when Aaron was talking about this basketball game, to hear him say, “Mom!  I asked Barb if I could talk at the game.  She said yes!!”  So now he was set.  There would be food and there would be talking…….especially his own talking……..and so he was happy. 

There will, as Barb said, hopefully be another basketball game for Aaron to attend.  For now, Aaron will eat here at home.  He has already requested his lunch – leftovers from last night of his favorite chicken casserole.  And he has asked if he can pour and drink the last of the coffee.  His day at home is beginning well and is full of promise, that’s for sure.

And for now, Aaron will also talk here at home.  Not even a sore throat will hamper his verbal skills.  I love Aaron and I love to hear what he says…….within reason.  Last night I had nearly reached the end of my listening skills, however.  He didn’t see me lowering my head and didn’t hear my sighs as I heard him thumping down the stairs once again to tell me something.  He also didn’t see my relief when he breezed past me to head down to share something with Gary.  Yes, Aaron, share the wealth…….please! 

I remember the Saturday morning a few weeks ago when Aaron would not stop talking.  Sometimes it’s just too much, especially when the subject is aliens or transformers or anything from a Star Wars game.  Finally Gary said, “Aaron.  Be quiet.”   Aaron said, “Why?”  And Gary wisely answered, “Because I want you to.”

Then Aaron responded with, “Ok.”

Pause from Aaron before saying, “And then why?”

Laughing felt good right at that moment.  Aaron sees no reason to be quiet.  One day I was trying to listen to an interview on the radio when Aaron popped in my room and of course, proceeded to talk.  I held up my finger and told him to hush while I listened.  He promptly said, “Sorry you’re listening to that and I’m talking.”  And he also proceeded to keep talking until I escorted him from the room. 

He has found that Jackson is a willing listener but not a great responder, so Jackson doesn’t get the amount of conversation that we do.  But one day Aaron excitedly said, “Mom, I said Great Dane and his ears act like they’re listening!”  Aaron loves listening ears, even on a dog!

Aaron even talks in his sleep.  I often hear him on the monitor having a regular conversation, including laughter.  He coined a phrase for this activity when one day he said, “Mom, Brandy and Barb were doing something on the computer where you could hear a voice but not see anyone.  Is that called voiceage?” 

So with Aaron, we have voiceage as well as normal conversation.  And there are many times that I just know I hear him when he’s not even in the house.  It’s a mom thing, I know……..and it’s an Aaron thing. 

I’m very thankful that Aaron talks.  I recognize that non-verbal autism would be heart-breaking on many levels.  It’s just that I sometimes reach overload, like Aaron did last year when we were having new siding put on our house.  Aaron would wake up in the mornings to the sound of loud hammering, especially when the men were working on the outside walls near Aaron’s room.  One day, totally frustrated, Aaron said, “I’m ready to let them be quiet!!”

Oh, Aaron, if only it were that easy.  Trust me, there are times that we are ready to let you be quiet.  But not for too long.  You do make life interesting and amazing, and I have tons of quickly jotted notes to prove it……….more notes than I will probably ever be able to even put into this blog. 

So keep talking, Aaron.  Because we want you to……..really.  And you’ll know when we’re ready to let you be quiet.  Like I said, if it were only that easy.