Category: Adult Autism

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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SEXY!!!

I posted this little piece on my Facebook page this morning, and decided…..in keeping with this blog title of He Said WHAT?!…..that I should post it here as well.  Enjoy!  And welcome to my world, daily my world, thanks to Aaron!  🙂

Aaron could have slept in today, but NOOOO…..he was up before the light of dawn!  He’s raring to go to his yearly meeting at Carlos O’Kelly’s.  A lunch meeting, which is hours away.  Sigh.  He just came bounding in the kitchen.

Aaron:  MOM!! People kiss on Star Trek!

Me:  OK.  (I figured that was a safe response)

Aaron:  Is it OK to kiss?

Me:  It depends on who you kiss.  (Now I’m worried).

Aaron:  So who can you kiss?

Me:  (I almost said, “Lots of people,” but my coffee kicked in and I thought better of it). You can kiss your husband or your wife.

Aaron:  Well, on Star Trek a woman came from another planet and she kissed Captain James T. Kirk!!

Me:  OK. (Another safe response, I hope) (Although I could have told him that he could kiss someone from another planet. That’s pretty safe.)

Aaron:  When they kissed, I said, “SEXY!!” (No surprise.  He says, “SEXY!!” when Pat Sajak hugs a contestant on Wheel of Fortune!)

Me:  (No response) (Hoping he will go take his shower)

Aaron:  Is it OK to say, “SEXY?!”

Me:  (searching for wisdom) Yes, it’s OK to say sexy, but you don’t need to go around saying it to everybody.

Aaron:  Well, the next time you and Dad kiss, I’m saying, “SEXY!!”

Me:  That’s fine. (Please let this be the end!)

Aaron:  SEXY!! (Finally walking away!)

I guess I should inform Gary that we will now have our own cheering section when we kiss.

 

The Unknown Path

Aaron woke up yesterday morning in a bad mood.  He was obstinate, and so I was trying hard to just leave him alone.  I know that he often comes around to “the good side” if I give him some space and some time.  He banged his fist on his desk, making me jump even though I wasn’t in the same room with him.  Still I kept quiet.  But when he came downstairs later as I waited on him to leave for his day group, he was carrying a bag full of his Star Wars DVD’s.  He told me that he was going to give them to a friend because he didn’t want them anymore…..and I told him that he was NOT giving them to his friend.  He then slammed the bag on the kitchen table….and I lost my composure.  Big time lost my composure.

Lots happened after that.  Aaron got in the van, was quiet for awhile, and then he began to tell me that he loved Dad more than me…..that Dad was nicer than me…..that he wasn’t going to watch television with me that night…..and on and on.  I was still angry and not soft toward Aaron at all.  And soon he was crying, which is a sure sign of total frustration on Aaron’s part.

My heart was sad and broken.  I was mad at myself, and mad at Aaron, but also I was hurt for him and just so tired.  I knew that there was more to my anger than Aaron’s belligerent behavior.  Sure, I do get tired of dealing with Aaron’s inability to sometimes control his emotions and his actions.   But there are times that I also struggle with controlling my own emotions and actions.

Without getting too specific, I was already bothered by some thoughts I was having that had nothing to do with Aaron at that moment.  I was having a little pity party of my own.  It was one of those times when I was already looking at Gary’s and my life with Aaron, and giving in to the reality of some things that can really get me down.

Sometimes Gary and I would just like to pick up and go.  Many of our former responsibilities are gone.  But with Aaron, we always need to find caregivers, which is extremely hard to do.  It’s also expensive.  So at a time when couples our age are empty nesters, retiring, enjoying life…..Gary and I are stuck.  I feel terrible saying that, but it’s the truth.  I usually don’t get mired in those thoughts.  I often look at Gary and say, “We have no problems.  God has been so good to us.”  And Gary is careful to thank the Lord for our many blessings when we pray.

But yesterday morning, I was not feeling so blessed.  And therein is much of the problem I was facing.  I let my feelings dictate my response to Aaron, and it was not pretty.  It was not helpful or kind to Aaron.  And I was not pleasing God, for sure.

I know better than to compare myself to others.  But I also know better than to stay in that frame of mind, or to heap guilt upon myself and live in defeat after I blow it.  God forgave me, and Aaron did, too.  I pulled over in a Quik Trip parking lot near Aaron’s day group so that he and I could talk.  It was difficult.  Aaron was crying and I was very frustrated at myself and at him.  Finally, though, we sifted through our hurt feelings.  I told Aaron that I was sorry for the way I acted.  We went to Paradigm, where Aaron walked around talking to some of the staff and some of his friends, but eventually leaving with me.

And as we drove toward home……..in the middle of Aaron talking about Protocol Droids and Darth Nihilus and star maps and HK47 and Revin and Malak and endless other outer space things that are only important to him……he said, “Do you know it’s hard for me to say I’m sorry?”

Wow!!  That was amazing!

I smiled, patted his leg, and assured him that I understood.   We later went to Chili’s for lunch, where we blew our straw wrappers on each other like we always do and where Aaron asked the blessing – “Lord, thank you for this food and please help me to be good today.”  And THAT was a blessing!

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Yes, my day was totally rearranged and very different from what I had planned, which was to be a nice rainy day at home to get some extra things done and not have anywhere extra to go.  But God had rearranged my attitude along with my day, and that is always the best help ever.

God wasn’t through with me yet, though.  This morning I read this verse in Psalm 77:19.  The Psalmist was recalling what God had done for Israel when they left Egypt.

“Your road led through the sea; Your pathway through the mighty waters – a pathway no one knew was there!”

Israel wasn’t happy when they got to the Red Sea.  God rescued them from slavery in Egypt and they were thrilled…..until they saw where God brought them.  The path led to an impossible situation.  The Red Sea!  Now what?!

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But God had a path planned for them…..a path no one knew was there.  But God knew!!  He showed Israel His power as He rescued them there.  He taught them lessons they would never have learned had their path remained easy and secure.

God led them through the impossibility on the path He knew was there.  So God has put each of us who follow Him on a certain path in life.  We don’t always get the green pastures or the still waters of Psalm 23.  In fact, all of us are going to come upon a Red Sea in our lives…..an impossible situation that will end up showing us the possibilities that God has in store for us.

His power is made perfect in our weakness, He has told us, and in His power we take one step at a time…..step by step…..on the pathway that we never knew was there.  But He knew it was there!

He may lead us TO a Red Sea, but He has promised to also lead us THROUGH the Red Sea.  I may not even see the other side of my Red Sea on this side of heaven, but I do know that God will shepherd me through each day on this particular path.

I love the old hymn, He Leadeth Me.

He leadeth me!  O blessed thought!  O words with heavenly comfort fraught!  Whate’er I do, where’er I be, still ‘tis God’s hand that leadeth me.

Sometimes mid scenes of deepest gloom, sometimes where Eden’s bowers bloom.  By waters still, o’er troubled sea, still ‘tis His hand that leadeth me.

He leadeth me, He leadeth me, by His Own hand He leadeth me;

His faithful follower I would be, for by His hand He leadeth me. 

 

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These Words

Last night I was helping Aaron turn down his covers as he got ready for bed.  Sometimes there is a moment that is especially poignant with Aaron.  A moment that hits me in a profound way…..in a way that causes me to remember where we were and what we were doing when the moment occurred.  The night before, Aaron….for whatever reason…..was very groggy and dizzy, with slurred speech and unsteady legs.  He was still trying to talk, but with great effort.

Last night, though, Aaron was his usual chipper self.   We were going through his bedtime routine as he talked and talked and talked.  He brushed his teeth, swished his mouthwash, helped me set up our diffuser – which means he poured in the water, checked the name of the oil, and took a little tentative sniff – watched as I turned on the baby monitor we use to listen for seizures, made sure I picked out his clothes for the next day and that they were on the back of his desk chair, put his back scratcher and hand towel on the seat of his chair, blinds lowered, desk clock turned around so the light doesn’t bother him, glasses put just where they belong, wrist watch put right beside his glasses, shoes in front of the closet, stuffed animals precisely in place in his bed, covers pulled up, and animal print blanket put on top of the bed exactly right and with no wrinkles.  It’s a process…..done precisely….or we must re-do the process until precision is reached.

It was when we were standing beside his bed, me on one side and Aaron on the other….pulling up his covers…..that Aaron said this:

“Mom, guess what Shauna is getting?”

Shauna is one of his friends at his day group, Paradigm.

“I don’t know,” I replied.  “What is Shauna getting?”

“She’s getting a NEW wheelchair!” Aaron answered.

Aaron had no idea of the impact of his simple answer to my question, and of the many thoughts that cascaded through my mind in a split second.  He just kept talking.

“I told her she should get a PINK one!!” he exclaimed, and then laughed at the thought of a pink wheelchair.

We smoothed his animal print blanket then.  He was finished with pink wheelchairs and had moved on to his bedtime log book…..his notebook in which he writes down the exact time he gets in bed and the exact time the next morning that he gets out of bed.

10:22.

That’s the time he wrote.

So was it 10:22 when Aaron spoke of Shauna’s wheelchair?  Or 10:21?  That fact would be important to Aaron.

But all I knew, after our goodnight hug and after I had turned out his light, is that my 33 year old son was happy about his friend’s new wheelchair.  That was nice of him.  But…..

Aaron wasn’t talking about his friend’s new car.  Or new job.  Or new house.

He was talking with pleasure about her new wheelchair……because his friends have special needs, like he does…..and a new wheelchair is indeed a big deal.

But as Aaron’s mother, this comment from him somehow yanked open that little door in my heart that I try to keep closed.  I try to keep it closed because I don’t want to hurt for him or for his friends.  I want to see his life as a wonderful thing, and it truly is!

But the reality of his life…..and the lives of his day group friends…..is far different from your typical 33 year old young man. Most young men Aaron’s age would be talking about new cars.  Aaron was talking about new wheelchairs.

I’m so happy that he was happy for Shauna.  But my momma heart got a deeper little crack in it last night.

I haven’t been writing lately.  I’ve just been very burdened about lots of issues.  Life goes in cycles like that, you know.  As a Christ follower, I know to be careful during those down seasons.  It’s very easy to be consumed with the here and now, and with all my own worries…..not to mention the serious concerns for some in my family and some of my friends…..and even our great country.

So I’ve asked God to do what I have often in the past asked Him to do, and that is to give me some extra special assurance from His Word.  And God did just that a few days ago.  He gave me a sweet message from His Word, ABOUT His Word.

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It’s from Isaiah 8.  Israel was facing dark times, and so God told them lots of truths about how they were to behave, how they were to act, Whom they were to obey and to fear, and even warned them about seeking answers from mediums and fortune tellers.

And then in verse 20, God said to Israel:  “To the teaching!  And to the testimony!”

That’s it?

Yes, that’s it!

That’s EVERYTHING!

Where do I need to go when I’m overwhelmed with burdens…..with darkness…..with struggles…..?

Where do I go when the reality of Aaron’s life makes my heart sad?

To a book?  To a person?  To an activity?  To food?  To entertainment?

NO!

To the teaching!  To the testimony!

In other words, to God’s Word.  Staying in my Bible.  Reading it with purpose, asking God to open His Word to me and give me direction….this is where I need to go.

Dale Ralph Davis, in his book Stump Kingdom, says it so well:

“Only the light of the written word will carry us through the darkness of our times.  This holds true whether the ‘times’ are dark historical times, dark personal times, or even the end of our present time.”

Davis then told about Robert Bruce, an old minister in the Kirk of Edinburgh, who on the day he died asked his daughter to set his finger on the last two verses of Romans 8:  “I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”

“These words – that is always the Christian’s slogan.  Only in the teaching and the testimony is there light and help and anchorage.  The Christian is the man or woman who wades through the affairs of life always saying: ‘Set my finger on these words.’”

Wades through the affairs of life……the unexplainable, the sad, the hard, the heavy.

I must wade through it all with my finger on God’s Word.  No other substitute will give me the peace and the comfort that I will find as I read what God says to me in His Word.

I can’t tell you why Aaron has special needs.  I won’t say it doesn’t hurt, sometimes more than others.

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But let me tell you about God.  Let me tell you about His love.  Let me tell you that He is sovereign.  Let me tell you what He has written.

“To the teaching!  And to the testimony!”

 

 

 

 

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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Eclipse Day!!

We just finished with our exciting 2017 Eclipse…..or not.  Not as in whether it was exciting.  I was amazed and awed with it, even though we didn’t have total coverage.  We had 94% coverage, but that was still impressive……at least to me.  Aaron?  Well, we sometimes don’t totally know the extent of his awe when something isn’t quite as exciting as he imagined it would be.

He was plenty excited when I told him last Friday that he was staying home on Eclipse Day.  He was even MORE excited when I told him that we would eat out before the eclipse started. 

We went to Riverside Café, wearing our matching eclipse shirts, where Aaron ordered the biggest baddest dish he could find.  Chicken strips, mashed potatoes, green beans, a roll, and salad.

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He didn’t leave one bite unswallowed, even when I accidentally put his fork and spoon on the pile of dishes to be carried away before he was quite finished.  Oh well!  His knife worked fine as he finished his mashed potatoes!

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I took the time there that he was captive in the booth to explain the eclipse to him once again.  I showed him a diagram of just what was happening, what to expect, and what time it would start.  And I made sure he knew that it wouldn’t get completely dark here. 

When we got home, I knew according to the clock that the eclipse must have just started.  It was still bright outside.  I unwrapped our special glasses, preached one last sermon with dire warnings about looking at the sun without the glasses, and out to the back yard we went.

I got Aaron’s glasses positioned over his regular glasses, and then put mine on.  We looked up at the sun and……WOW!!!  How awesome it was to see the moon beginning to cover the sun!! 

“Look, Aaron!!!” I exclaimed.  “Isn’t that awesome?!”

“Yeah,” he said. 

Well, ok.  It’s not fully impressive yet, I thought, so he’ll be more excited next time we come out.

We went in the house, and Aaron hurried to his room to get on his computer.  A few minutes went by.  I could tell more from the light changes inside the house than outside that it was getting dimmer.  Inside the house it looked like evening, not 12:30 in the afternoon.  So I went back to the yard, looked up through my glasses, and then went in to get Aaron.

“Aaron!” I called from the bottom of the stairs.  “Come back outside.”

“OK,” he replied.  Soon he was downstairs.

“Has it started?” he asked.

“Well, it had started when we first looked at it,” I told him.

We looked up into the sky again through our glasses. 

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“Cool!!” I said.  “Look at the moon now!”

“Yeah,” Aaron said again.

Back in the house……back outside.

“Has it started?” Aaron asked again.

“Umm, it started like 25 minutes ago,” I said once more.

Looked through our glasses…..I was excited…..Aaron, still not greatly impressed.

Wait a few minutes, get Aaron, only to hear once again – “Has it started?”

Same answer from me.

Inside the house, which was getting darker, and soon I called to Aaron again.

“Has it started?” he asked yet again as we went out the back door.

Sigh.

I just decided it was better to say yes from now on.

I knew the problem.  He was waiting for it to get darker than it was outside, even though I told him it wouldn’t get completely dark. 

“Let’s go to the front and look at the cool shadows of the sun through the leaves,” I suggested.

We stood in the driveway as I pointed out the shape of the eclipse seen in the leave’s shadows.

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“Has it started?” he asked.

I had to chuckle as I told him again that yes, it had started.

We sat on the patio and then went to our viewing spot in the back yard several more times as the eclipse wound down.  And every time I heard again – “Has it started?”

Finally, enough of it was over that I decided to call our Eclipse Day a day.  We went in the house and Aaron scurried back up to his room.  Before long, though, he was back in the kitchen.

“Are we going outside again?” Aaron asked. 

“Well, the eclipse is over, Aaron,” I told him.

“Did I see it?!” he asked.

HaHaHa!!!

I assured him that he saw it, even though it didn’t get completely dark outside.

I’m not sure he believes me yet.

I wonder what he’ll tell Gary tonight at supper about our big Eclipse Day. 

I have a feeling that his big lunch will eclipse our big eclipse.

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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!

 

 

Quit Chasing the Carrot

I was ready to take Aaron to his day group this morning, waiting on him to also be ready, and so I decided to go ahead and take our recycle items out to the recycling trash can outside.  I hurriedly passed by our Rose of Sharon bush that sits right outside the garage door, at the corner of our house.  This bush is a prolific grower, so as I passed around it on my way to the recycle can I was thinking that its branches were starting to once again crowd the walkway. 

“I need to remember to trim it soon,” I thought as I walked around it.  “It seems like I just did that.” And my mind made a note on my mental “to-do” list of yet another job that needed doing. 

But as I was dodging long branches, and buzzing bees, I was struck with the beauty of the blooms……the blooms that I so often take for granted because I’m too busy with other things “to-do”………and too focused on the work that was being presented instead of the beautiful workmanship right there in front of me.

I took Aaron then to Great Clips for a haircut before dropping him off at Paradigm.  When I got home, I took a few minutes to look at our Rose of Sharon bushes……really look. 

There is so much beauty there in each bloom.

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So much stunning color.

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Such intricate handiwork done by God.

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Why don’t I take the time to notice and appreciate this gift?  Because I’ve grown so used to it that it doesn’t seem important to me on a daily basis.  I see them every day.  They’re common, routine, old hat. 

Much like the morning I just had with Aaron.  A morning full of his routine……coffee, shower, always talking, computer, get him out the door…..nothing fantastic or amazing.

What if I decided I was tired of this routine?  And oh, I have!  But what if I decided not to participate in it anymore?  Things would really fall apart if I reneged on my responsibility.

But what if I realized that this is not just a responsibility?  My life with Aaron is a privilege……an opportunity.

How is that? 

Yesterday, over lunch, my friend Joyce told me again how she had read a book out loud to her two special needs sons.  She told me this again……because she reads that same book, or sometimes on a good day another book……every single night to her sons.  Again, and again, and again, and again……

It really hit me how wearying that sameness is to her.  In fact, she and I laugh about the sameness of our lives with our special sons.  I’ve written about Aaron and Skip-Bo…..Aaron and his bedtime routine…..morning routine……insistence on sameness. 

And sometimes I wonder, is this all there is for me?  I am limited in what I can do because of being tied down with Aaron.  There, I said it.

I mean, I’m limited in what I can do with my life OTHER than Aaron.  I can’t even commit to jury duty or volunteering because he might be having a seizure day or a meltdown day, and I would be a no-show. 

But as Joyce talked, and we laughed about the book reading, I told her that there is another side to this life.  She is giving glory to God in taking care of her sons, day after day, again and again and again. 

You see, God has given her…..and me…..and you…..the life we have.  Sometimes we think that there must be more out there for us.  If only I could do this, or do that……go here or go there……accomplish this or that like others do…..then my life would have wonderful, beautiful purpose.

When really, right in front of me, IS my purpose.  I often see only drudgery if I’m not careful.  Or at least boring sameness.

But God put me where I am, of that I am certain.  So why do I keep chasing the carrot, thinking that grabbing that “always out of reach” something will be where my joy and accomplishment will lie?

God wants obedience more than anything in my life.  He wants me to live this life that He planned for me, faithfully, here and now, with my eyes on Him and on the responsibilities that come with this life with Aaron……not with my eyes on the “what could be but won’t be.”  And then as a result, living in defeat and frustration and anger because I can’t catch that carrot.

So every day with Aaron is a day to point to God by being obedient in the sameness.  I point to God and give Him the glory He deserves when I am faithful where He has put me, not when I am unhappy and miserable.  Misery disappears, too, when I am thankful for this life.

Thankfulness and misery can’t be in the same room together.  The choice is mine.

 It’s good to step back sometimes and look at the big picture……to see how all the blooms grow together into a thing of beauty……not a thing that needs be dealt with, but to be genuinely enjoyed.   

I may not even see the beauty this side of heaven, but God does.  And someday He’ll share it with me, and I’ll be amazed at how the routine and the sameness and the seeming insignificance were actually huge and wonderful and just what He designed for me and for Him.

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The WHAT Bite?!

When writing about life with Aaron, I have often mentioned how he rubs his hands together.  He does this when he is excited, happy, nervous, or when deep in thought as he concentrates on a particular something that captivates him or requires him to focus.  When he is excited or happy or nervous……and even when he’s angry……his hand rubbing is usually very fast.  I wouldn’t be surprised someday to see smoke rising from his blazing hands!  But when he is deep in thought or totally focused on something, his hand rubbing is slow and calm.  It’s then that one can really see the intricate movement he makes with his fingers.  The whole process is very fascinating.

While in Houston recently visiting Andrea, she and I were able to watch Aaron as he listened to some of his favorite music.  He was totally engrossed in listening to Celtic Thunder, matching each song with the title on the back of the CD.  His head was lowered and there he was, his hands slowing rubbing together and his fingers doing their rhythmic motion……over and over and over.  I quietly picked up my phone and was able to video him without interrupting this magical moment.  You can watch the video below.

 

And now I can write about his doctor visit last November……a visit that involves his unique hand rubbing, done in “slo mo.”  You can better visualize what happened that day.  I just hope that I can also convey how hilarious that whole experience was.

Last year here in Wichita, oak mites were prolific.  These are beastly little creatures…….barely visible……that drop from oak trees and then are carried by the wind to every corner of one’s yard.  They leave nasty little bites that resemble mosquito bites, and itch like crazy.

One day Aaron had been outside and soon enough he had several itching welts break out on his skin.  We explained oak mites to him, all of which he found fairly fascinating.  It wasn’t long, though, before he had scratched one bite on his leg to the point that it was raw and bleeding.  Fearing infection, I put some antibiotic cream on it, slapped on a round Band Aid…….and being the good mother that I am, promptly forgot about it.

In my defense, it was the time of year for cooler weather so Aaron was wearing long pants during the day and long pajama pants at night.  I couldn’t see his leg.  Out of sight, out of mind.

There.  I am absolved of any guilt.

Why the guilt, you ask?  Or not.  Anyway, one evening it was warmer and so Aaron decided to wear his pajama shorts.  We were watching Wheel of Fortune when I looked over and noticed a bright red spot on Aaron’s leg.  The bright red spot turned out to be a perfect ring around his perfect round Band Aid……the Band Aid that had been on his leg for – oh – maybe two weeks?

“Oh my goodness, Aaron!” I blurted out.  “I totally forgot about your oak mite bite and your Band Aid!!”

I jumped up from the couch, took his Band Aid off, and stood there staring at a perfect round red splotchy ring around the original bite.  My first thought was that maybe Aaron had really been bitten by a tick and now had LYME DISEASE!!!

My second thought was to wonder how on earth Aaron still had that old Band Aid on his leg if he was taking proper showers??!!

The first thought I kept to myself.

The second thought I all too gladly shared with Aaron.

“Aaron, if you were taking showers like you’re supposed to, you would NOT still have that Band Aid on your leg!!” I informed him.

“I have SO showered, Mom!!” he loudly asserted.

“Well, if you were showering correctly that Band Aid would have fallen off!” I continued.

“But I DID shower, MOM!!” he also continued.

I knew that his showering skills, or lack thereof, were not the main concern at this point but it seemed the perfect moment to drive home that point.

It didn’t work, by the way, but I must always try.

The next morning found us at McConnell Air Base, where Aaron’s primary care doctor walked in the exam room to check out Aaron’s leg.  I knew that we needed to rule out a tick bite and Lyme Disease, if possible, and maybe get an antibiotic.

Dr. Broberg walked in and greeted Aaron, which always makes Aaron feel very important.  Dr. Broberg is a civilian doctor, so he doesn’t move away.  He’s been Aaron’s doctor for a long time now and knows Aaron well.

“So what’s going on with your leg?” Dr. Broberg asked.

I started to answer, but Aaron was having none of that.

“Mom!!” he firmly said.  “I’ll tell him!”

So I hushed, sat back, and got ready to enjoy the moment.

Aaron knew he had Dr. Broberg’s full attention, so he sat up straight and began his story.  And as he began talking, he also began rubbing his hands together……ever so slowly……over and over and over…..his fingers in perfect motion between the movement of his hands.

Dr. Broberg glanced at me out of the corner of his eyes, a slight smile tugging at his lips.

Aaron began his rendition of his condition.

“Mom and I were outside taking a walk,” he began.  He paused as he rubbed his hands together.

“And……and…..while we were outside taking a walk…..”  Another pause.  His hand rubbing was nearly hypnotic.

“I got…..I got….an oak bite!!”  Long pause for effect, while Dr. Broberg’s slight smile had now turned into lip twitching as he struggled not to laugh.

“And…..and……I SHOWERED!!!!” Aaron said with great emphasis as his eyes left Dr. Broberg in order to glower at his offending mom who dared accuse him of NOT showering!!!

It was just too much.  I lowered my head and laughed, while Dr. Broberg was now in a full grin.

Aaron composed himself and continued his drawn out story, never wavering from telling every single detail of his OAK BITE.

Never once did he say oak MITE bite.

Dr. Broberg determined that Aaron probably had a fungus that grew around the Band Aid that had been on for such a long time.  It really had nothing to do with Aaron’s oak bite.  Yes, I said oak bite…..for from that time forward his bite has been classified as an oak bite.

Besides, it was fun to see the looks on people’s faces as Aaron told them all about his oak bite.  And then showed them the oak bite, complete with fungus ring.

Delightful.  Totally delightful.

Some special cream did the trick and before long the round ring rash was gone.

But not gone are my memories of yet another hilarious doctor visit with Aaron…..Aaron of oak bite fame!