Category: Understanding

Life is Like a Coupon Box

I walked into the kitchen on a recent Sunday, after Aaron had completed his usual Sunday coupon clipping chore.  There on the counter lay a Dillon’s coupon, one that I had put into my coupon box several days earlier.  I knew right away what this lone coupon on the counter meant.  It spoke volumes to me as it silently stared up at me…..volumes about our Aaron.

You see, this coupon…

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Does NOT belong among these coupons.

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The Dillon’s coupon is not a regular coupon to Aaron, and only regular Sunday coupons are to be placed…precisely…in the coupon box.

Silly mom for thinking otherwise.

Aaron’s life is like that coupon box.

Aaron wants most things in his world to be done in a certain order…..words said in a particular way…with order and sequence and expected results.  But life doesn’t operate that way, no matter how much Aaron tries to orchestrate it to do so.

I saw a small example of this the other night in our family room.  Aaron was looking forward to watching one of our favorite television shows.  He wanted to know what time it was coming on, so I told him what the television guide said.  BUT…I had to add…the football game that was on earlier would no doubt disrupt even the best planned TV schedule.

The TV guide said our show would air at 8:30, but at 8:30 another program was still on.  Aaron was not happy about this development.  I explained the situation, multiple times, as Aaron sat in his favorite chair with his legs covered by his favorite blanket and with his favorite snack-of-choice on the ottoman in front of him. 

He sat there in misery, staring at his jar of cashews, and not-so-patiently waiting for his program to start.  Football games are the epitome of a messed- up world, in Aaron’s orderly world.  A 15 minute quarter may last 47 minutes, for crying out loud, and THIS IS UNACCEPTABLE!! 

So there Aaron sat in his chair, waiting for the other boring show to end so that his anticipated show could start.  But that wasn’t all that wasn’t right in Aaron’s world.  It was the cashews.

You see, he will only eat his snack-of-choice during the actual television program.  Not during the offending show that was still playing.  Not during the commercials.  ONLY during the actual program that is to be seen will he eat his actual snack that is to be eaten.  So he sat there, staring at his open jar of cashews in front of him, but forbidden because of the dumb show that was still on…because of the dumb football game that was before that…on this day that was getting dumber by the minute. 

We made it through that cascading torrent of dumbness…barely…without a meltdown or without Aaron giving up on it all and returning to his room like he threatened to do.  And on the very second that his program appeared on the screen, Aaron’s hand dipped into the jar of cashews and his world was set upright on its axis, as it should be. 

The coupon box once again only held the correct coupons.

Last night, as I waited for Aaron to get his bedtime routine completed, I watched him write down his time-to-bed in his special notebook…a new notebook, by the way.  His other is year’s full of the times he went to bed and the times he got up in the morning.  Aaron wrote down the time…10:14.  He was preparing to close his notebook, but paused and then gave a little sigh as he scribbled something out in his Went-To-Bed column.   

“What happened?” I asked.

“It went to five,” he flatly answered. 

Yes, the time changed the second he finished writing 10:14.  It became 10:15, so he HAD to correct the time in his notebook.  Scribbled-out numbers are unsightly, but far preferred over having the WRONG time recorded. 

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The coupon box was once again correct.

Aaron is slowly working his way through watching the complete old Star Trek television series from the 1960’s.  In the opening monologue before each show, Captain Kirk is referred to as Captain James T. Kirk.  Therefore, Aaron NEVER calls Captain Kirk just Captain Kirk.  Captain Kirk is Captain JAMES T. KIRK, people!!

So this conversation happened the other day:

“Mom, who’s your favorite Star Trek character?” Aaron asked.

“Hmmm…” I pondered.  “I guess it would be Captain Kirk.”

Aaron looked at me blankly, as if I had mentioned a foreign character from another show and another time and another planet and another galaxy.

“Who?!” he questioned.

“Captain Kirk,” I repeated.

He continued to stare at me.

Finally…

“You mean, Captain James T. Kirk?” he queried.

Oh, how I wanted to double over in a total belly laugh!!!

But doing so would have highly offended Aaron, so I had to just answer him as seriously as if I was agreeing to the outcome of a very serious discussion about a profound world event.

“Yes,” I sincerely replied.  “Captain James T. Kirk.”

Aaron was very relieved to have this issue settled, and so his Star Trek discussion was continued.

The coupon box was aright once more.

It’s vital that those who live and work with Aaron understand how very profoundly his life and his happiness is tied to the order that he alone sets for himself…and expects everyone else to understand and follow.  Sometimes his desired order can’t be followed, but we must know how to guide Aaron through those times.  Those times when the wrong coupon is in his box, and Aaron most definitely will react, are times that demand great patience on our part. 

When Aaron is deeply frustrated, angry, defiant, or confused is very often a time when the wrong coupon is in the box.  We can’t always see it and we don’t always expect his strong reactions, but we…and everybody else who works with Aaron…had just best realize that there is more going on inside that brain of his than we will probably ever know or even remotely understand. 

It can be so hard and challenging and maddening to us at times…and we know Aaron better than anybody on the planet.  We love him more than anyone, too.  Imagine how very difficult it can be for others to achieve this level of understanding!  And how very impacting in our lives it can be for this lack of understanding to affect us, and Aaron, in a very negative way! 

We have been very blessed with some amazing, kind, understanding people in Aaron’s life.  We have also seen the damage that can come from those who don’t get it.  We have watched this damaging impact in the lives of others whom we know and love, as well, who have special children that have their own coupon box.

Let’s give grace to our children…to the parents of these special ones…and try to comprehend just what each one’s coupon box is really all about. 

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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!

 

 

A Poopy But Grand Day!

In the grand scheme of things, this day of mine was really not a big deal.  However, I don’t really give a flip about grand schemes when it’s so often the little things…..and some not so little……that make one want to go somewhere far away and very quiet.  A place where there are no pooping dogs, and where 32 year old sons can go into the public restroom and not be heard from the hall as they laugh and whoop very loudly.

My day began at 3:45 A! M!  Our elderly Great Dane, Jackson, sleeps in our bedroom with me and Gary.  Not with us as in the bed with us.  NO, NO, NO!!  But he sleeps on a bed at the foot of our bed, on the floor, where big Great Danes belong.  He’s been getting me out of bed quite often lately, needing to go outside to potty, and usually it happens at about the awful hour that I awakened this morning.  But it wasn’t Jackson that woke me up.  It was an odor.  A very unhappy odor.  Not wanting to awaken Gary, and assuming that Jackson had left me his usual large gift of a turd or two on his bed, I got out of bed and didn’t turn on the light.

Big mistake.

Both of my feet soon landed in soft, gooey poop.  So there I was, in the dark, trying to walk on the sides of my feet to the bathroom where there was a LIGHT SWITCH that would help me to see what I already knew was there.  I nearly fell backwards as I tried to wobble forward, and wondered how I would explain all of this to the ER doctors as I lay on the gurney covered in poop with bones poking out of my poor broken body. 

I know that’s dramatic.  I was actually very composed…….probably in a state of near shock as I first cleaned my feet with a Clorox wipe, and then tackled the carpet.  Jackson lay on his blanket, separate from his bed.  Yes, he has a bed with a comforter on it and his favorite blanket.  And then he has yet ANOTHER blanket on the floor beside Gary.  He’s spoiled.  He watched me with a bored expression.  I glared at him but didn’t speak.  Then I made him get up and go outside to potty anyway, and I left him downstairs. 

There!!

I never went back to sleep.  Our diffuser helped dispel the odor, but my body and brain were revved up! 

I guess Aaron was revved up this morning, too, because at 6:30 he came into the bedroom where I have my quiet time and he just quietly stood there……staring……at me. 

I turned and stared back.

“Mom,” he said with no emotion.  “I woke up.”

I was still in a poopy frame of mind.  “No joke,” I replied.  But the sarcasm was totally wasted on Aaron, who doesn’t get sarcasm.  And I, having had enough of waste, just turned and continued with my reading.  He must have thought I was hopeless, because he went back to his room and shut his door. 

Today Aaron had a doctor appointment at the air base.  It was time for his physical, as well as his post-hospital visit with his primary care doctor there.  I was so prepared the night before……clothes picked out, and all of his paperwork filled out and put in a nice folder on my desk.  I was good to go!  Until it came time to actually go.  I don’t know what happens in the last five minutes before we leave.  I mean, does Aaron plan to go barefoot?!  Why are his shoes and socks not on when I told him what time we were leaving?  Then I had to quickly clean his glasses, grab my earrings, don’t forget my phone, turn off the radio, answer his multiple questions about where we would eat lunch today……and LET JACKSON OUT TO POTTY!!!!!

We were about two miles from the house before I realized that I had forgotten the carefully prepared folder with all of Aaron’s physical paperwork that I MUST have.  So I did a quick turnaround, went back to the house, up the stairs as fast as I could, and off we went again.  Aaron put his seat back and slept.  We hit every single red light on the way, I do believe, but made it just before our appointment time.  Why does Aaron walk SO slow?!   And so much for getting there 15 minutes early.  I was very thankful that it wasn’t mentioned by the receptionist. 

Aaron went to the restroom then, and as I stood at the check-in counter quite a distance from the bathroom, I heard the unmistakable sound of Aaron’s laugh……and his excited whooping yell……and several booming claps.  Not of thunder, either.  It was Aaron clapping for some reason known only to him.  I stood outside the bathroom door at that point, and when the door opened Aaron got the “evil eye” for sure from me!  He was unaffected, of course, and just followed me up the hall where we waited for our name to be called.

And where he almost……almost……got off another loud clap.  But I intercepted it, and hissed out a stern warning to him about NOT clapping!!  And NOT making such noises in the public restroom!!

“You’re a grouch today,” was Aaron’s response.

“No joke,” I wanted to say but didn’t.  Why waste my breath. 

There’s that word again!!!

Aaron’s name was called at last, so we followed the medic into the hallway.  Aaron knows the routine, so he stopped at the scales…..took off his shoes…..and was weighed.  Then to the exam room, where he sat Indian style on the exam table but soon was stretched out comfortably after his vitals were taken.  No sense wasting a good place to lay down! 

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Did I really say wasting?

It was then that I noticed the large coffee stain on his shorts…..and another stain…..and some spots on his shirt.  So much for trying to be nice and clean to see the doctor!  Exam done, papers filled out, TB test read, and assurances made that he did not have to pee in a cup again today – and we were done!!

Put a little gas in the van, make our way through multiple construction zones, back to our side of town, and finally we were at Aaron’s favorite place – Carlos O’Kelly’s!  We sat down in our booth and our server was there.  And immediately Aaron said…..loudly, of course – “Can I have a regular salad?!”  It happens every time, and every time we tell Aaron to wait until we actually order food to order his salad, but he just MUST be sure that the server knows that if all else fails……if there is no other food…..no water…..if the table collapses……if the walls crumble…..CAN I HAVE A REGULAR SALAD??!!

We finished our grand day at Wal-Mart, which is the grandest of the grand in Aaron’s book.  He went to the electronics, of course, where he saw more movies that he wants and a computer mouse and headphones……

And in our cart were other things he saw and knew he could have…..CheezIts…..flavored water……and some beef jerky for Dad!  All picked out by Aaron, who was very happy.

And very tired.  He told me that he would sit on the bench and wait for me, but I saw this sight as I left the register after paying. 

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He surely doesn’t mind being comfortable wherever he may be.  Doesn’t faze him one bit to lay down in front of everybody at Wal-Mart, or make noises in the bathroom, or talk loudly for all to hear, or any number of other things that sometimes makes Mom grumpy on a bad day. 

But Aaron isn’t trying to make me have a bad day.  He’s just being Aaron. 

Kind of like Jackson was just being Jackson, doing what a dog needs to do when a dog needs to do it.  I may as well not waste my breath fussing about any of it.

I said it again, didn’t I? 

Kind of like Aaron, don’t you think?

 

 

 

 

The Beauty IN The Beast

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

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

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

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

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

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

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

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

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

We get “the look.”

We get the questions, spoken or not.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

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

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

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

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

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

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

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

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

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

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

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

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

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

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

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Take Time

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Take time to smell the flowers.

Take time to understand our Aaron.

What Will I Wear?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Thursday I wore this blouse.

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

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

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

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

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

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

So on that day I was fun.

The next day I wore this blouse. 

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

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

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

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

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

“What’s wrong?” I asked him.

“What you have on,” he answered. 

“Don’t you like it?” I asked.

“NO!” he replied.  “It’s ugly.”

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

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

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

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

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

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

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

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

“OK,” I said.

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

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

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

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

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

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

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

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

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

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

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

I slipped on some forgiveness right then.

“I love you, too, Aaron.”

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

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