Category: Epilepsy

Aaron’s Lost Order

One day last week our exterminator was coming.  Aaron’s favorite storage place is his bedroom floor, so I had reminded him to clear his floor before we left the house.  

Soon a very upset Aaron came bounding up to me.

“Mom!!” he angrily said, “I lost the order of books!!”

When I walked into his room, I saw this.

His large stack of books had taken a tumble, ruining the careful order that Aaron had put them in.

I knew not to dismiss what to us would be no big deal.  To Aaron, this mayhem was a HUGE deal.

We got the books put on his bed as I assured him that he could restore the order when he came home later that day.

This is a perfect picture of our life with Aaron, more so lately than perhaps ever before.

Aaron has a rhythm to his life that he creates.  His routines and methods are vital to his happiness.  

We know better than to discount his routines.

There is always a balance in our life with Aaron as we seek to help him manage disruptions while at the same time validating his concerns…concerns of his that can lead to serious anger outbursts from him, which in turn lead to disruptions in our life.

Sadly, Aaron isn’t concerned about the effects he has on us.  Autism often manifests itself as narcissism in Aaron and in most others that I know who struggle with this condition. 

I have always said that physical disabilities are much easier understood than behavioral ones.

For instance, we have sadness and sympathy for Aaron when he has seizures.  The interruptions in our life that seizures might cause when we must change plans are clearly understood.

But when Aaron loses the order in his life that he has created he reacts with anger that sometimes becomes rage.  Nothing we say or do at that point has much if any effect.

I know when Aaron has a seizure that I can’t tell him to just wake up and come take a walk with me.  He understandably is unable to do that.

But I must also know that when Aaron has an emotional meltdown over something that has upset him, I can’t tell him to just get over it and stop being ridiculous.  He understandably is unable to do that either.

Except most of the time, at least on paper, his behaviors at those times are not understandable to most people.

My husband and I understand what is upsetting Aaron, most of the time, better than anybody.  

But again, those behaviors of his…goodness, they take a toll on us some days.

Autism surely is full of puzzle pieces, but we don’t have a picture on the box to tell us what the finished puzzle will look like.

And the pieces keep getting rearranged as Aaron’s order from day to day gets lost in one way or another.

Sometimes, though, a sweet picture starts taking shape from all those random pieces that we’re trying to fit together.

Despite lots of anger lately about having to fit his precious nephew and niece into his life and how their being here at our house causes his order to be mostly lost, he does often pull it together and shows his caring side.

Saturday evening, I watched Ryker climb up on Aaron’s bed and hand Aaron his current favorite Golden Book.

Aaron took the book and started reading Goldilocks and The Three Bears.  

When I read that book to Ryker, I use all the voices.  Papa Bear has a deep voice.  Mama Bear has a medium voice.  Baby bear has a little baby voice.  Ryker does the same when he “reads” it to us.  

When I read it to Ryker, though, we don’t make it through the whole book in one sitting because Ryker is soon off and running to his next adventure.

So, there was Aaron propped up in bed with Ryker kneeling on the bed nearby staring at him.  Aaron began to read Goldilocks and The Three Bears.

Except Aaron read the story with no inflection in his voice…no deep voice or medium voice or baby voice.  

No excitement.  No change in his voice when he read a question.  

Just a monotone monologue.  It was really hilarious.

And Ryker didn’t move a muscle.

Maybe he was in shock.  I have no idea.

But for the first time that I have seen at our house, Ryker let Aaron read the whole book.

I think Ryker senses a difference in Aaron but in his innocence, he accepts his Unkie Aaron just the way he is.

Oh, that we could all do the same!

Especially when Aaron’s life, like his stack of books, has lost its order and we think we might lose our minds.

Ryker let Aaron finish reading his book.

Sometimes we need to let Aaron finish his book with us, too…to try to understand him as we listen to his anger and his words.

To accept Aaron as he is while still trying to teach him and show him that there are other ways to manage life when he loses his order of books.

My Mother and Aaron

Ten years ago, on Mother’s Day weekend, we held my mom’s funeral.  It was fitting for her to be honored during the weekend dedicated to mothers, but it was also heart rending.  Her funeral, conducted by my brother, was the sweetest funeral I have ever attended.  

For her funeral, John had each of the grandchildren write down their favorite memories of their grandmother.  Aaron couldn’t do that, so I wrote about the special relationship they had.  I want to share that now.

So many memories come flooding in when I sit and think of my mother and her relationship with Aaron, her special grandson.  Not that he was any more special than all the other grandchildren, but because Aaron has special needs.  Yet those special needs are what made him so very special to his Grandmother.  From a young age, Aaron was diagnosed with epilepsy and autism.  His curiosities and abilities were a joy to his grandmother.  I’ll never forget her delight at watching him in Colorado, before he turned two years old, showing her his letters and naming them correctly…and how surprised and delighted she was.  I remember our visits to Third Street and all the fun Aaron would have.  The sprinkler in the yard, helping Grandmother put together her famous homemade pizzas, playing with the big marble toy or Legos, and Cheerios in the living room coffee table drawer.  And spinach!  Mom fixed spinach one night and Aaron, thinking that spinach would make him strong like Popeye, kept opening the refrigerator door, pry open the plastic container of spinach, take some of that cold spinach out, grimace as he swallowed it, and then push the container back and close the door.  Mom just stood there outside the kitchen, peeking in and laughing so hard at Aaron as he repeatedly choked down that cold spinach. 

We visited for Christmas right after Dad was diagnosed with liver cancer.   Aaron watched Grandmother and Granddaddy open their Christmas presents.  One present they received was a plaque with a long poem about what cancer cannot take away.  Mom, knowing that Aaron could read very well, handed him the plaque and asked him to read it out loud to us.  Aaron read every word while we all cried.  It was a memory Mom often spoke of, with tears in her eyes.  

One more!  We came home in 2010 for Mom’s surprise birthday party.  Even then she was having a hard time remembering all the grandchildren.  But she looked across the room, saw Aaron, and her mouth and eyes opened wide.  “There’s Aaron!” she said with true joy.  That recognition meant so much to Aaron, even though he couldn’t really express it.  I could tell from the look on his face.  So, the night that we found out she had died, I reminded Aaron of that day when Grandmother recognized him from across the room.  Aaron just smiled and said, “Yeah.”  It wasn’t a long comment, but his smile and his joy were unmistakable.  

That is what Mom gave to him…a smile, joy, and great love.  

I am forever grateful that God gave us our mother to love each of us, but also to especially love our special Aaron.

Her smile, her joy, and her great love will always be a part of our lives.  

And for that, I am forever blessed and grateful.

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My Adornment

It was Christmas Eve morning, and I was preparing for a day full of cooking and family fun.  The day before, I had pulled off my plan for an “Aaron day” without a hitch.  I wanted him to have time doing what he loves before all the commotion of Christmas wreaked havoc with his routine and therefore with his behaviors.  Our son and his girlfriend, just in for the holiday, joined us at All Star Sports for some Aaron-style fun.  Afterwards, we ate at Old Chicago, a favorite of Aaron’s.  It was a great time!

But early the next morning I heard Aaron having a big seizure.  This was a bed wetting one.  So mixed in with my cooking and all the other Christmas prep, I found myself hauling loads of bedding to the laundry room.  My main emotion was sadness for Aaron that day as he had two more big seizures over the next several hours.  

Yet these moments also drive home to me the fact that caregiving is my life.  It’s a life I never envisioned for myself when I contemplated marriage and motherhood as a young starry-eyed woman.

Every mother lives a life of self-sacrifice in many ways but having a child with special needs of whatever kind increases that role in ways she never knew.  Any caregiving role is the same.

That is why I was so impacted by some verses I read one morning.  Paul was talking to Titus about practical ways that we as believers are to live out the gospel.  In chapter two of Titus, Paul gave instructions to older men and women as well as to the younger men.  

He ended that section by urging slaves to conduct their lives in a way that they would “…adorn the doctrine of God.”

In that culture, slaves were nothing.  They were the lowest of the low.  Yet Paul told Titus to encourage them to adorn the doctrine of God, the gospel.

This is a high calling for such a lowly people!

The word “adorn” carries the meaning of arranging jewels in a setting that displays their beauty.  

I love what John Stott said about these verses:  “…the gospel is a jewel, while a consistent Christian life is like the setting in which the gospel-jewel is displayed; it can add lustre to it.”  

Our human tendency is to equate importance with the “big things.”  Red carpets, book signings, conference speakers, a record contract.  

Not with wet bedding, doctor visits, behavior issues.  

Not with dementia, hospice, hospitals, infusions, cancer…

But the gospel shines brightest in the darkest places.  This is where God is especially honored and given great glory.

How?  By our faith being seen in our service to the ones we are caring for.  By yielding to God’s plan for our lives with trust and peace, even through tears or anger or resentment that inevitably comes at those vulnerable moments.  

It’s a matter of my heart, not my surroundings.  

“Slaves, in all things obey those who are your masters on earth, not with external service, as those who merely please men, but with sincerity of heart, fearing the Lord. WHATEVER YOU DO, DO YOUR WORK HEARTILY, AS FOR THE LORD RATHER THAN MEN.”   (Colossians 3:22-23)

Where do you find yourself today?  

Remember that the seemingly lowest place is the place of high calling in your life as a believer.  

Even if we feel like no one notices our service, God still urges us to shine with the beauty of the gospel.  God notices and that is all that really matters. 

 

Am I Ready?

It was November 7, 1984.  Gary and I lived in Colorado Springs.  I was one week into my 9th month of pregnancy with our first child.  Gary had just returned home from flying his Army Cobra helicopter.  I headed up our stairs when a pain hit me.  Gary saw me from our bedroom as he was changing out of his flight suit.

“Now?” he asked with surprise.  

I soon knew that, yes, the time was now.  We hurried to Fort Carson and just a few short hours later we welcomed Aaron into the world…into our world.  

I had been busy making all his nursery items.  The yellow and white gingham curtains, bumper pad, and changing table cover were waiting on Aaron.  But there were still things to do, like putting the crib together and finalizing all the other details of his cute yellow duck nursery.  We just weren’t all the way ready for Aaron to join us three weeks early!

In so many other ways over the 40 years of our life with Aaron, I have found myself still not ready.  Not ready for this journey of Epilepsy, Autism, and having our adult son still living with us.  Not ready for the hundreds of ways that our life is not at all what we thought it would be as we held our little 6 lb. 4 oz. squirming bundle in that old military hospital on Fort Carson.

In so many ways, Gary and I are set apart from our peers even at this stage of our lives.  We are not free to come and go as we might wish.  Aaron is entwined in every decision we make.  And when I meet someone new and we are getting acquainted, the usual response when I tell them that we still have our adult special needs son living with us is, “Oh.”  Most people don’t know what to do with that scenario and so they quickly move on to other topics. 

Aaron can be so funny.  He is just who he is, too, especially in public.  But even that can be a bit embarrassing to us as he does his Aaron things, oblivious to what others are thinking.  Like sitting in the grocery aisle to examine his latest food find.

Or sitting on the floor in every waiting room now so that he can work on his sticker book, even rearranging a chair or table if needed.

I have thought a lot about Mary especially now as we retell the Christmas story at this time of year.  When Gabriel told her that she would become pregnant and give birth to Jesus, God’s Son, she humbly said, “Behold, I am the servant of the Lord; let it be to me according to your word.”  

She must have experienced so much embarrassment as her condition became known.  Did anyone other than Joseph really believe her story?  The gossip, the looks, the questions…how she must have been set apart from everyone in that small town.  

Mary gave birth far from home, surrounded by animals in a dirty stable.  Not even her mother was there to help her.  I doubt that the scene was like the ideal pictures we see on our Christmas cards. 

Then the move to Egypt to escape Herod and coming back to their hometown of Nazareth a few years later where everyone knew Mary’s story of her past.  

Was Mary ready to be the mother of Jesus?  Ready for the turmoil that surrounded Jesus? Ready for the fear as she watched Him being hated and persecuted?  Ready for the extreme heartbreak as she watched him tortured and put to death?  

I doubt that she was.  But she had already made the most impactful decision of her life when she yielded to God’s will for her life.  

That same yielding to God is what brings me the deepest peace as well, even in the fear of Aaron’s seizures.

Peace, eventually, during the frustrations of his behaviors.

I know, and so can you, that “…the God of peace…even Jesus our Lord, will equip you in every good thing to do His will, working in us that which is pleasing in His sight, through Jesus Christ, to whom be the glory forever and ever.  Amen.”   (Hebrews 13:20-21)

We don’t know what it is that will please God in our lives.  

But we can be ready if we know and follow Him, trusting our loving God as we, like Mary, say, “May it be to me according to Your word.”

The best gift we can give Jesus is our heart and our will.

May each of you have a very blessed Christmas season as we celebrate the birth of such a Savior!  

Lean On Me, Aaron

Yesterday Aaron and I went to his annual PCSP meeting.  How many years have we had these meetings?  More than I can nearly remember.  

His case manager and I decided several years ago to hold our meeting at one of Aaron’s favorite restaurants, Carlos O’Kelly’s.  Aaron really doesn’t like meetings that discuss him unless we’re letting him do all the talking about really important stuff.  You know – matters like whether Pluto is a planet or not, what solar flares are, and are black holes really sucking in stars?!  But mulling over matters of his likes and dislikes, what he is or is not allowed to do at his day group, what his goals are, and so on and so forth…well, Aaron would rather leave the room and find someone who IS wanting to hear him talk about planets, flares, and black holes.  But put a plate of enchiladas, chips and salsa in front of him and he’ll endure our needless talk.

Aaron had gotten out of bed super early the past two mornings.  Space videos on YouTube were calling to him, I guess.  As we sat in our booth munching on chips and salsa, he started leaning and leaning until finally he was resting against me like a little child.  

I eased him over and he sat straight for a couple minutes, but then he began leaning into me again.  I knew that he was sleepy from his very early mornings and from his meds, but still I kept propping him up so he could eat and participate in the meeting if needed.

Later, as I drove us home, I looked over at him sleeping soundly in his seat.

  

He is sometimes showing that age is creeping up on him.  He even seems a little feeble at times, like he did as he leaned on me during lunch.  I know that seizures are taking a toll.  He has memory loss, tremors, drooling sometimes, and other effects of both seizures and medicines.  

My heart is stirred with so much love for him.  So much concern for his life now, and for what the future will hold for him.

Yet there are those other moments, too…more and more, it seems.  Moments when Aaron is frustrated when things are not going his way at his time.  He is becoming more impatient with waiting, more set in his routine, and more expressive when those frustrations mount.

Therefore, Gary and I are finding ourselves more stretched on some days.  Our own frustrations mount along with Aaron’s.  Stress seeps through every crack in our strong armor.

I look at Aaron leaning on me, and I know that he needs me when he is struggling, both physically and emotionally.  His reactions are often beyond his control.  Sometimes that fact is hard to remember.

So, who do I lean upon?  

God.

Yes, Gary and I support each other.  I have amazing friends who walk a similar journey to ours.  I have great family on both sides.

But it is God Who leans down to me as He did the other night and fills me with deep peace even as the storm swirls around me…Who understands my struggles…Who speaks comfort to me…Who assures me with these words:

“Trust in the Lord and do good; dwell in the land and cultivate (feed on) faithfulness.”   (Psalm 37:3)

I can feed on so many things like anger, comparisons to others, resentment…the list goes on.  

Or I can obey God and lean into Him.  He understands my need.  And I must understand my need to trust Him and do good.

To feed on faithfulness even when I just want to walk away.

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

“Commit your way to the Lord, trust also in Him and He will do it.”  (Psalm 37:5)

Commit.  Lay on God’s shoulders the heavy burden.  

He is strong enough for all my burdens and He is there for me to lean upon when I am tired and done.

And oh, I cannot express enough about the grace that God gives me to continue putting one foot in front of the other, day after day with Aaron.

It’s not one bit about how strong I am or that God gave Aaron to such an amazing parent.

But it IS all about how God meets me in my most down moments with His sweet peace and His words that speak such joy and comfort to me.

And as I learn to lean on God, I can be there for Aaron when he needs to lean on me. 

God holds me up so that I can do the same for Aaron.  

That’s even more amazing than all the black holes in the universe!

Stepping Into the Mist

Several years ago, I turned onto a road near our house, and this was the scene that met my eyes.

I couldn’t see very far ahead.  And even though I knew the road, I didn’t know what might be on the road out of my sight.  The fog hid what was there, beyond my vision, but I knew I needed to go forward.

If you know Jesus as your Savior and are following Him, you know that there are certain times that He puts you on a road that is shrouded in the unknown.  I see it around me all the time, either with family and friends, or those that I don’t personally know.  And I have experienced it in my own life.

I will never forget the day that Aaron had his sudden first big seizure.  We were living in Germany where Gary was stationed in the military.  Aaron’s seizure was completely unexpected and terrifying.  I remember the cold fear that squeezed my heart.  Then came the ambulance ride, the days in the German children’s hospital, the language barrier, the exhaustion, and the shocking diagnosis of Epilepsy.  

But I also remember our first night back home, when I could finally sit at my desk and cry the tears I had held back all week.  And there it was…God’s amazing peace filled my hurting heart.  He reminded me that He had not gone anywhere…that He was with me and with Aaron…and that He was the same God whose character I had known for many years.  He had not changed one bit.  He had a reason for this unexpected bend in the road…this fog that I could not see through still held Him there with me.  

I could freeze in fear or be angry with God or be bitter about why He allowed such a thing to happen to our little Aaron.

Or I could step out in faith and trust in my heavenly Father.

I love what F. B. Meyer said: “There is nothing, indeed, which God will not do for a man who dares to step out upon what seems to be the mist; though as he puts down his foot he finds a rock beneath him.”

Moses knew this about God when he spoke to the assembly of Israel:

“For I proclaim the name of the Lord; ascribe greatness to our God!

The ROCK!  His work is perfect, for all His ways are just.

A God of faithfulness and without injustice, righteous and upright is He.

(Deuteronomy 32:3-4)

Whatever you are going through today, know that if you are following God, He will be your firm rock in the mists of fear and uncertainty.  

You will find a rock beneath your feet and that rock is God Himself.

And some day you will see that same road clearly, in all its purposes, as the best plan that God could ever have for you.

But We Need the Rain

It sure has been stormy over a large part of the country this spring.  We have had our share of strong storms here in Kansas as well.  After several years of drought, the comment I hear over and over after another storm…and have many times said myself…is, “But we need the rain!” 

Storms certainly can be beneficial, and beautiful, too.  

But they can be hard as well, and scary.

I woke up this morning to another storm passing through.  But I also had the thought of life’s storms on my mind.  That’s because Aaron had five hard seizures during the night.  I finally had to give him a rescue med.  These times with Aaron leave me in an emotional frame of mind, vulnerable in my spirit.  It’s important that I corral my thoughts and there is no better way to do that than to spend time with the Lord.

I opened my old devotional book, Streams in the Desert, to today’s date.  The scripture today was from Mark 4.  It’s the story of Jesus getting in the boat with His disciples on the Sea of Galilee.  The first sentence on the page was this:

“Even when we go forth at Christ’s command, we need not expect to escape storms…”

The storm outside my window matched the storm in my heart, and so God had a special storm story for me.  I love His love for me!  I love how He gives to me exactly what I need, exactly when I need it.

Jesus knew that His disciples would encounter a strong storm out on the lake. After all, He created the storm!  The disciples, terrified, cried out to Jesus as the storm tossed the boat.  Jesus, asleep, was awakened by their frantic voices asking Him if He didn’t even care that they were perishing.

Jesus calmed the storm and then gently rebuked them.

“Why are you afraid?” he asked them.  “Do you still have no faith?”

Jesus put His followers in a place of testing.  In their storm, He showed His power and in so doing, He used it to increase their faith.  

I have learned, especially in our life with Aaron, that God has put me in a boat and said, “Let’s go over to the other side.”  

But getting there involves hard times.  I don’t like the storms, but how they increase my faith and my love for Him!

Just like realizing how much we need the rain that our storms have brought, so I realize that the sufferings of my life bring me what God knows I need.

And this lesson is huge:  God hasn’t commanded me to understand.  He HAS commanded me to trust.  

If I had all the answers as to the why’s of suffering, I would have no need to trust.  In learning to trust, my walk with God is sweeter and deeper than I would ever have known otherwise.

“We never know how much real faith we have until it is put to the test in some fierce storm; and that is the reason why the Savior is on board.”   (Streams in the Desert)

God in His kindness ended this day with a gorgeous sky, a perfect picture of the beauty of knowing and trusting Him.

Sticker Shock

Last week in Walmart, Aaron was excited to show me a sticker book he had found.  He wanted to give it to Ryker, his nephew, and if you know the history there then you know that this was a very sweet gesture.  But I told Aaron the sticker book was way too advanced for Ryker but added that I thought he should try to do it.

Now Aaron isn’t very keen on most craft-type projects.  As I showed him how you match the lettered and numbered stickers to the spaces on each picture, he became more interested.  So, we bought the book and home we went.

To my great surprise, the first time that Aaron and I worked on the first dog picture, he was hooked.  He absolutely loves finding the correct sticker and matching it to the right place on the picture.  Aaron is a little shaky because of his seizures and seizure meds, but he is really doing great with putting the pieces in each space as carefully as he can.  After I sat with him for that one time, he has finished each picture mostly on his own with only a little help from me here and there. 

He is SO excited about this accomplishment!  He wanted me to take a picture to send to everyone.

Aaron is very happy with this sticker book and with how well he is doing with it.  It’s great fun to see.  And he wants everyone else to see as well!

He took it to his Epilepsy doctor, who was so nice to take the time to let Aaron show it to him.  

His office staff and the nurse were also kind enough to look at it and let Aaron explain all about the stickers.

Aaron took it with him, along with a new cat sticker book we bought, as we went to visit our friend Speedy for his birthday.  He showed them all about it and Speedy’s mom ordered him some right there on the spot.  Aaron was thrilled!

That morning as I was having my quiet time, I heard Aaron rolling his chair up the hallway.  In the room he came, sitting in the chair as he guided it with his feet, and rolled up to the bed.  He proceeded to open his sticker book and get to work.  

“Um, Aaron,” I said, “this is my quiet time, so you need to run on and do your stickers in your room.”

“But Mom,” he replied, “I can have my quiet time here, too.  I can be quiet!”

Aaron being quiet is a miracle that God has not granted yet.  

Off he rolled, back to his room.

I was out for a bit yesterday morning and when I drove back to the house, there was Aaron sitting at the end of our neighbor’s driveway…talking, of course, and showing our two very sweet neighbors his sticker books.

Today he showed all our Meals on Wheels clients his dog sticker book, letting one find the correct sticker and helping her put it on the right spot.  Then he took the book into Pizza Hut and worked on it while we waited on our lunch.

You might wonder why I am writing about all this.  It’s because Aaron has never really enjoyed painting or coloring or drawing or most other art projects.  He will do them reluctantly, with lots of our help, but his heart is never in it.

But this sticker book has captured his attention enough that he was willing to try it on his own.  It’s a huge victory for him and for me!

I’m as thrilled as I was when he learned his alphabet before he was 2, and taught himself cursive, and how to read and do math.  

That was so long ago, and over the years we see regression in some areas as well as frustration on Aaron’s part about what he CAN’T do.

But this sticker adventure has been a huge shot in the arm for Aaron.  He is delighted with himself, and he is so happy that he has something he can share with others…something that HE did on his own!

At this time of graduations and awards and all the pride that parents feel, it’s just sweet that we can praise Aaron for a job well done and see the joy on his face.  

And then to see the understanding and the shared excitement that others share with Aaron is just the cherry on top.  

It may “only” be stickers, but oh, it is SO much more to Aaron!

Uncle Aaron: Out of Order

A few weeks ago, Aaron had an incident at his day group.  He got mad at another client there, lost his temper, and ended up being pushed down.  As a result, a nose piece on his glasses got a little bent.  As soon as we could, I took Aaron to our vision center to have his glasses fixed.

Knowing that Aaron greatly enjoys telling everyone all the juicy details of these happenings, I paused to talk to him before we went inside.  I told him that no one needed to know all about how his nose piece got bent.  It’s hard to explain without making him or the other young man or his day group look bad. 

Aaron agreed.

I was not convinced.

As soon as we were seated at the table, Aaron took off his glasses for the technician.  She immediately saw the bent nose piece.  But Aaron could not stop himself from giving at least some form of explanation.

“My place in Wichita went out of order,” he flatly said.

She was confused but made no comment, only smiled.

I was holding in a belly laugh.

And Aaron strikes again with his hilarious and unique way of explaining things, I thought.

It wasn’t until sometime later that it hit me.  Aaron had made the perfect explanation of how he sees his new role as Uncle Aaron.

His place in our family went out of order.

Order is what Aaron craves in his life.  But it must be the order that Aaron mandates.  Anyone who disrupts that order is the object of Aaron’s anger.

Aaron’s nephew, Ryker, has disrupted Aaron’s ordered life.  Aaron’s normal has been upended now that Ryker and Andrea and Kyle live here.  

When the three of them are at our house, Aaron’s mood often becomes confrontational and angry.  He makes comments about how we don’t love him anymore or don’t love him as much as we love Ryker.  Or he gets angry at Kyle for whatever reason.  

Aaron has had us to himself for years.  This sharing business is a monumental adjustment for him.  

Autism is so tricky…so very hard to understand sometimes.  A lot of times.

Or we understand it on paper but when behaviors affect our joy and our emotions then it’s, quite honestly, maddening.

This is how I look at it.  When we see Aaron having a seizure, we understand what is happening.  We feel concern and empathy for Aaron.  We want to help him and be sure that he is cared for and safe.

However, when we see Aaron’s autism at play, it usually involves some sort of behavior from him.  Sometimes he can be funny or uniquely amazing, but there are also plenty of times that he is disruptive, angry, unreasonable…I’ll stop there.  You get the picture.

When he is seizing, we stay with him until the seizure is over.  We would never tell him to stop seizing.  He can’t, of course.

When he is having an autistic episode of anger or frustration, we try to talk to him…to tell him to stop…to get him to listen to reason.  But he usually can’t, any more than he can stop a seizure.

But that fact is hard to grasp in the middle of everyone’s high emotions.  

When special needs affect behaviors, it is very difficult to have the same level of compassion that we have when there is only a physical effect, such as a seizure.  That’s because behaviors affect others around the person so personally.  Our emotions get involved because we are frustrated, hurt, angry ourselves, disappointed, and the list goes on.  

Aaron reacts to his environment very strongly.  His environment has been turned upside down by the addition of his nephew into his life, as well as his sister and brother-in-law. 

All of this makes me think of that old Tina Turner song: “What’s Love Got To Do With It?”

Nothing, to Aaron.  Not when his world is out of order.

It’s not all bad, though.  Aaron has sweet moments, and we relish those.  

A few nights ago, he wanted Ryker to sit on his bed before they left.  He gave Ryker a necklace of his and laughed in delight at how happy that made Ryker.  Then Aaron ran downstairs to tell Kyle he was sorry for being mean to him earlier.  

Yesterday, Aaron walked outside with Andrea and Ryker. 

 

Aaron was more patient with everyone and didn’t attempt to be the only one talking all during our lunch.

“Was I good when Andrea and Kyle were here, Mom?” he asked me last night. 

He’s so childlike at these times and my heart really goes out to him.

Our prayer is that Uncle Aaron will learn to be secure in his place in our family; to develop a relationship with Ryker as well as Kyle; and to know that he is greatly loved.

And to someday know that his world is not out of order but is instead in a very wonderful order!

Skittles and A Super Bowl Ring

Nearly every day that Aaron is at his day group, one of the staff will take him the short distance down the road to the nearby Quik Trip.  This little outing is the highlight of Aaron’s day.  He loves picking out what food and drink he will buy.  

Aaron especially loves Skittles, but his picky mom (ME!) has told him that he does not need to buy Skittles every day…and he definitely does NOT need to spend the majority of his money on the big bag of Skittles.  A small bag of Skittles a couple times a week is OK.

Aaron has made this rule of Mom’s a big deal.  A very big deal.  He has talked it to death with me…teased relentlessly about buying Skittles when he didn’t buy them…told the staff over and over and over again about how “Mom said NOT to by Skittles!!…and I am quite sure, has talked loudly and clearly to the Quik Trip staff about how his Mom said not to buy Skittles.  

During Christmas, Aaron was taken on his regular trip to Quik Trip.  And guess what?  He was given a special gift from the workers there.

You can probably guess what it was.  

A very BIG container of yummy Skittles!!

Just look at Aaron’s face and you won’t need me to tell you how happy he was.

How I laughed when I saw these pictures!

But more than laughter, I was so touched by the kindness of the Quik Trip workers who obviously have gotten a kick out of talkative Aaron’s Skittles stories. 

What a very nice thing for them to do!

Fast forward now to last week.  Aaron and I had run into our nearby Dillon’s, where he hightailed it to the deli counter as soon as we walked in the door.  I finally caught up to him, only to see him bent over rubbing his hands together and talking loudly in great delight.

“MOM!!” he nearly yelled, “they have Cheddar Pasta Salad today!!!”

Aaron’s love of Cheddar Pasta Salad is well known among the deli staff.  Actually, it’s well known among many of the Dillon’s staff in other departments as well because Aaron makes sure that everybody is at the receiving end of his talking.  

So, on this day I agreed to let him buy a Cheddar Pasta Salad…a LARGE!!…of course!

The very nice woman behind the counter has been getting to know me and Aaron.  She is very patient with Aaron no matter how busy she is.  She has experience with autism because of her own young son.

She happily filled the large container to the brim with the salad while Aaron excitedly oversaw her every move, all the while eagerly talking to her about the upcoming super bowl game.  She told us how busy the deli was as they were preparing platters for the game, and then asked if we would like to see one of the deli trays she had just made.

She showed us the pretty tray and pointed out the super bowl ring that was part of the decoration on the side.  

“Hey Aaron,” she said, “would you like a super bowl ring?”

“Yeah!!” he eagerly answered.

She handed him a ring and he put it right on his finger, a smile spread across his face.  

At Meals on Wheels a couple days later, he wore that ring and showed it to everyone on our route.  

There it was on his finger while we ate our burgers later.  

And I was impressed with how the kindnesses shown to Aaron in these two experiences also show the caring hearts in so many people that cross our paths.  Kindness doesn’t have to come in the form of giving Aaron things, either.

Kindness is also shown by a smile.

Or by not staring at Aaron like he is some sort of oddity.

And certainly, by being willing to listen to Aaron if he happily corners you somewhere with talk of his latest game or book or movie or SKITTLES!!

Being kind to our special son is a huge gift to not only Aaron, but to those of us who love him so much as well.

All our special people will thrive under the sunlight of love and kindness that shines down on them from those we encounter every day.

I am very thankful for those that know this and practice it in our lives. 

Pass the Skittles, Aaron!