God’s Work of Art

I love how Gary stops to enjoy the world around him.  Sometimes I may not quite agree with it, like when he found a huge Orb Weaving Spider on the back of our patio chair recently and instead of killing it, he placed it gingerly in our flower bed.  You who know my fear of spiders will also know that I am now avoiding that flower bed, or am stalking around it carefully like an NCIS agent at a crime scene. 

I wasn’t at all surprised this past Sunday afternoon to walk out in our garage and find a Cicada, a poor dead Cicada, laying on Gary’s work bench.  I knew that Gary had placed it there for me and for Aaron to see.  I didn’t even have to ask.  I paused to look at it, which prompted Gary to tell me about the Praying Mantis he had rescued from the ground and placed in the pecan tree.  And then Gary remembered that he had meant to get his magnifying glass so that Aaron could have a closer look at the Cicada. 

I got Aaron while Gary got the glass, and soon Aaron was doing his own examination of the Cicada.  Everything about this common creature…..this sometimes annoying insect…..was super fascinating when enlarged under the magnifying glass.  His sheer, intricate wings……his compound, bulging eyes……his very perfect camouflage design…..the hooks on the end of his legs. 

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As Aaron examined the Cicada, we took the opportunity to point out that all of this design was God’s doing.  Aaron knows that.  But still it’s nice to have the opportunity to again draw Aaron’s attention to the reality that we have a personal Creator Who put lots of thought and planning into the design of an insect. 

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Our Cicada encounter has made me pause, once again, to also examine another fact that I know all too well but sometimes struggle to remember.  Our own Aaron, unique and special, is also one of God’s extraordinary designs.  

Why would I struggle to remember that fact?  Because just as the shrill noise of a Cicada can be irritating, sometimes the daily-ness of Aaron’s behaviors can be irritating as well to me and Gary.  Yet when we stop to examine his intricacies, we do see how amazingly Aaron is wired.

Take his water bottles……his ever and very important, to him…..water bottles.  He must have three water bottles.  Since he has in the past struggled with low sodium and must watch his water intake, his three water bottles are smaller than they used to be.  I somehow snuck that change past him.   Here is the scene over Labor Day when we were on the patio visiting with my cousin, Jim, and his wife Patti:

Aaron came out on the patio…..yet again…..and interrupted our conversation by asking if he could have his three water bottles.  I told him that he should just drink one, considering that it was a little late and he had drunk a big glass of water at dinner.  He would not drink just one of his three water bottles, because the three must always go together as three.  You do NOT drink ONE of the THREE.  You drink THREE of the THREE.  However, he said that he would drink one bottle of water from the frig in the garage where we keep the water bottles.  That’s because the water bottles in the garage are not part of the THREE.  Getting Aaron to veer from this set way of thinking is like treading water…..in the middle of the ocean…..with no rescue ship in sight.  Trust me.

So as Aaron and I talked about this water bottle decision, I was internally examining him and realizing fairly quickly where he was coming from.  So amazing he is! 

Then there are his Star Trek videos that he is now watching:

 We got him the old Star Trek television series from the 60’s as a Christmas gift.  He has been watching them in his bedroom, at his desk, on his computer monitor.  But then he started coming down to the family room to watch any other video that he wanted to see instead of using his own DVD player in his room.  Why, you ask?  Well, at least we asked.  And though Aaron didn’t exactly verbalize his reasoning at first, we soon realized that for now, his DVD player is only for Star Trek…..since it IS a series and since he DID already start that series on his player in his room.  He MUST finish the series on his DVD player before watching anything else, even if it takes months.  Gary and I can go along with it, or we can fight it and suffer the unpleasant consequences. 

It didn’t take Gary and I long to decide how to handle that one.  Welcome to the family room, Aaron. 

Sometimes Aaron is the one who is doing the examination:

Yesterday Aaron had a doctor appointment, which always means that I take him to lunch.  Eating out is his favorite sport!  Yes, sport…..because sometimes I feel that I have run a marathon after running interference during the course of our meal.  Or maybe that’s football.  Anyway, yesterday during our lunch Aaron heard the couple in the booth behind us order Espinaca.  He asked me what that was, so I explained it to him.  He still wasn’t quite sure about it, so when the unsuspecting couple’s Espinaca was brought to their table, Aaron wanted a look.  Before I could say “Espinaca,” Aaron was up out of our booth and halfway to their booth….craning his neck to catch a glimpse of their mysterious dip.  I do hope they were understanding.  I didn’t ask.

This whole incident led to me showing Aaron pictures of Espinaca…..going to Wal-Mart to buy ingredients for Espinaca….putting Espinaca ingredients in the crock pot…..and eating Espinaca while we watched a video last night….in the family room. 

Yesterday evening, Gary and I were in the garden for a few minutes.  Then we sat on the new bench Gary got us, under our old oak tree.  It was so pretty outside, and so nice to sit together for a few minutes.  But then the back door opened and out walked Aaron.  Gary sighed, and I knew what he was thinking.  Our quiet time was about to end. 

“But look at him, Gary,” I said.  “Just look at him.”  And we both looked at Aaron lumbering across the grass, wearing his pajama sports shorts and sleeveless shirt, with his socks and tennis shoes.  And we both just smiled at the sight of him.  Yes, we knew what was coming and we were right.  Godzilla this and Godzilla that, because Aaron just discovered that there will be ANOTHER Godzilla movie in 2018!!!!  And there we sat, we three, scrunched together on the bench…..listening to Godzilla talk.  But Gary and I were smiling, and we were responding, because this is the family that God has made us to be. 

You know, I don’t have a magnifying glass big enough to examine Aaron all at once.  But each little piece of him is very fascinating all alone.  Put together, he is one very complicated…..very astounding….very funny….work of art.   

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Laughing Again

Sometimes Aaron talks in his sleep.  He has conversations that are so clear it’s as if he’s awake, talking to me or Gary.  I hear him because I keep a baby monitor with me when Aaron is asleep, to listen for seizures.  One recent morning, I heard this “sleep talking” from Aaron, and I quickly wrote it down so I wouldn’t forget.

“Mom,” he said.  “In the movie theater, when I was laughing, I couldn’t see myself laughing.  I want to see myself laughing…..again.”

I have no idea what he may have been dreaming that prompted this little conversation.  But I sure have been thinking about it, wondering if deep in Aaron’s mind there is more meaning to this than I…..or Aaron…..knows.

Aaron goes through highs and lows emotionally as well as physically.  Lately, we’ve been having more lows.  He doesn’t want to go to his day group, Paradigm.  Then he goes, and is at times verbal and physical with staff and clients alike.  Sometimes he’s trying to tease and other times he is genuinely angry, but both times he can be hurtful.  He does so much better one-on-one, and most times he doesn’t participate in the group activities.  It’s just sometimes one thing after another during these low times.

Aaron is unfiltered.  Sometimes it’s funny…..sometimes it’s not.  He can tell you to shut up one minute, and the next minute be wanting to tell you something funny……and then wondering why you’re not laughing.  He’s so complex!!!  So frustrating!!!  And so endearing and heart breaking, too.

He knows when he’s done something wrong, but he just can’t seem to stop himself from doing it first, before the knowing kicks in – in time to stop the doing.  Make sense?  That’s our world.

So when he said that he wants to see himself laughing….again….I had to wonder if he is deep down genuinely wanting to be happier, like he used to be more than he is now, and hopefully will be again. 

When I pick Aaron up from Paradigm, I never know if I’m going to see happy Aaron:

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Or pensive Aaron:

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One night last week, I was so tired and so done with some ways Aaron was acting that I was the one who lost control.  I laid down the law with him, but I did it through gritted teeth and a pointing finger.  Yes, I was that tired and upset.  So the next morning, Aaron stood by me and said, “Mom, I’m telling Barb that you grind your teeth!!”

Barb is his second mother – his favorite Paradigm person.

“I don’t grind my teeth,” I replied to Aaron.

“Yes you do!!” he asserted forcefully.  “Last night you went like this!!”  And he clamped his teeth together and bared his lips, much like a rabid dog.

Oh dear.  Is that what I looked like to Aaron?  Probably.

But more than how he said I looked, his comment was a glimpse into how it hurt him for me to respond to him the way I did.

I’m so thankful for every new day, and for God’s new mercies that He shows me every new day.  Those are the same mercies I must extend to Aaron, hard as it sometimes is.

You know what’s really hard?  It’s really hard to remember who has the special needs here.  Sometimes Aaron is so high functioning that it’s easy to lose sight of the fact that his brain does not operate like mine.  And also easy to lose sight of the reality that he deeply feels his struggles more than we can know.

A day or two after I gritted my teeth with Aaron, I noticed that our house was getting a little dark.  The sun had been shining so brightly, but I looked outside to see a dark storm cloud forming right over our house.  Then I heard thunder, and next came a few large raindrops.  Nothing even showed on the radar at this point, but I sure saw and heard our little storm that soon moved on east of us and became a big storm in Wichita. 

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And I thought of what a picture that is of life with Aaron.  He can be our personal storm, loud and disruptive, and then move on to Paradigm to do more of the same there. 

But on this day of our storm cloud, Barb had called to say that Aaron had a bad day.  She said that her daughter, who has Barb’s kind heart, wanted to take Aaron to Wal-Mart.  I agreed, and then when I picked him up later he was so very happy.  He held a Dr. Pepper, and was full of laughter and talk about their little adventure.  What a difference Casady made in Aaron’s outlook with that one simple kindness!  The rain had ended and the sun was shining, both literally and in Aaron’s heart.

And this week, Aaron hurt his friend’s arm by being too rough as they were goofing off or as he greeted her…..I don’t know which.  He broke his glasses in anger on the same day.  Another storm cloud.

He didn’t go to Paradigm the next day.  I took him to Carlos O’Kelly’s for lunch.  It’s one of his very favorite places.  We had a wonderful server who has two special needs boys.  She was so good with Aaron, and I relaxed.  I just watched Aaron eating his food.  He loved every single bite.  He asked to go to Best Buy.  I’ve been saying no to that, but I agreed and off we went…..with Aaron happily pocketing two toothpicks to add to his toothpick collection.

He strolled through Best Buy, looking at this and that, and not asking to buy anything.  He just wanted to look.  It felt good to make him happy in such a simple way……lunch and Best Buy. 

He’s so dependent on us for these times out…..and so dependent on us for his happiness.  Despite our tiredness…..our frustrations…..our ineptness…..our failures…..he needs us. 

I want to see Aaron growing, learning, controlling himself, being responsible.  Like any parent, right?  It’s just a little more difficult for those of us with these issues like we have with Aaron.

But I must agree with Aaron.  Maybe on most days, more than anything, I want to see Aaron laughing again…..laughing from his heart.

And I want AARON to see himself laughing again, happy and having fun, knowing that he is loved. Loved by his Paradigm staff……loved by me and Gary…..loved by friends and family.

And most of all, created and loved by God. 

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I Don’t Care!

Aaron got out of bed at 6:30 this morning.  That’s a little early for him.  I hoped he would go back to bed because getting up too early can go one of two ways…..good or bad.  How’s that for being concise?  Aaron loves concise, and so I’ve learned that it’s not all bad……or sometimes not all that good…..to just get to the point.

Which is what we did this morning, Aaron and I.

He did stay in his room for about 40 minutes, during which time I realized that he was not going to climb back in bed for more sleep.  I was thankful for that extra time to finish…..almost…..my quiet time.  Then the bedroom door opened and there was Aaron.

“Mom, I just got up!” he tried to tell me. 

“No, you did not,” I corrected him.  “You were up at 6:30.”

And with that, I held up the baby monitor to remind him that I DO spy on him, as he thinks I do, and that I knew for a fact that he was out of bed at 6:30.

He just laughed and so I thought that we were on the good side of his early morning as he walked off.

But he soon returned, hovering behind my chair, and I could feel his stare on the back of my head.

“Mom!?” he finally said.  “Aren’t you coming to get my coffee?!”

I reminded him that I would do that when I finished what I was doing, and that he needed to wait.  Patiently.

He stared for a few more seconds before sighing and walking away again.  I knew now that this morning might be a few steps closer to bad than it previously was.

He was soon in his hovering position again.  I finished what I was doing, but not before his patience wore even thinner.

“Do you not want to stay in here FOREVER?!” he impatiently questioned. 

I continued to gather my things and to tell him that I would be there when I was done.  And then I asked him, in a rather chipper voice, if he would like to stop on the way to Paradigm and get something. 

His response was a resounding no, and then I knew that we had jumped over to bad for sure. 

He watched every move I made in the kitchen as I fixed his coffee.  I had already asked if he wanted something to eat.  Bacon?  Eggs?  Sausage?  Cereal?

No, no, no, and no were his replies.

I know his reasoning.  He thinks that if he eats in the morning, then he won’t want to eat at Paradigm in the afternoon.  OR…..that Mom doesn’t WANT him to eat at Paradigm, so mean Mom is trying to fill him up with food at home. 

I then remembered that I had sliced two green peppers and put them in the frig.  Aaron loves green pepper strips, so I pulled them out and showed them to Aaron.

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“You want some green pepper strips?” I chirped.

“You just want me to eat!” he angrily replied.

He stared at me.  He got no reply from me as I put the peppers back in the frig.

“Why do you want me to eat?!” he asked, still angry.

“Because I care,” I told him, but not with any chirp in my voice now.

“You just don’t want me to eat at Paradigm!” he insisted.

“No, Aaron, I want you to eat at Paradigm.  But it’s fine,” I said.

“You just care about me eating here and not at Paradigm,” he continued.

“Aaron, I don’t care.  OK?  I don’t care,” I told him.

Aaron stared at me.  I went about my business.

But he wasn’t done.

“Well,” he said, “When you DID care, why did you care?!”

Oh dear.  HaHaHa!!!  He makes me laugh even when he’s being incredibly frustrating!

Let’s see.  He doesn’t want me to care, but he can’t stand it when I don’t care, so he wants me to care, but when I care he doesn’t want me to care.

Is there any way to win in this battle?

And what mother tells her son that she doesn’t care?!!

Me.  I do.

Because I know that this is what Aaron needed to hear…..wanted to hear……but in the end he still wanted to fight.

So I had to put an end to it as best I could, in the best way for Aaron’s way of thinking.

Whew!!  Complicated. 

It’s just another example of how we have to figure out what makes Aaron tick, especially when we’re ticked.  And I was. 

I never dreamed I’d be telling a child of mine that I didn’t care, but I never dreamed I’d have an Aaron, either. 

I know I care.  He knows I care.  But at that moment, he wasn’t wanting me to care in the way that I did, so I had to tell him that I didn’t.

One thing I’ve learned in this life with Aaron is not to allow guilt to intrude into these moments.  I know my heart and God knows my heart. 

It’s unnatural to say that I don’t care, but I learned a long time ago to throw my normal parenting books out the window……and write a whole new one for Aaron. 

I should entitle it “Unnatural Nurturing.”

Or maybe just, “I Don’t CARE!!”……a guide to caring without caring.

Makes sense to me!

 

 

Helping Dad

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

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

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

Hmmmmm……

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

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

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

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

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

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

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

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

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

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

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

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Happy Father’s Day to Gary! 

 

You Want to WHAT?!

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

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

Aaron would have thought I was weird.

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

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

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

I waited a few seconds.

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

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

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

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

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

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

Get it?

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

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

Who am I kidding?

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

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

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

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

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

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

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

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

Oh, but Aaron had one more thing to say.

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

Well.

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

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

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

The girl just smiled, a very large smile.

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

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

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

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

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

 

The Beauty IN The Beast

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

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

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

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

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

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

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

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

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

We get “the look.”

We get the questions, spoken or not.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

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

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

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

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

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

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

Belle and Beast

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

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

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

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

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

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

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

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

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Take Time

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Take time to smell the flowers.

Take time to understand our Aaron.