Category: Anger

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.

Looking For a Smile

I was standing in the grocery store aisle one day when I noticed someone walking toward me.  I looked up to see an older woman headed my way.  I stepped back out of her way as she came nearer.  I noticed that she seemed to be trudging instead of just walking.  She looked burdened and tired.  Our eyes met and I gave her a smile.  She stopped in her tracks.

“Oh,” she said to me.  “I’ve been looking for a smile all day!  Thank you for giving me a smile!”  

And with that she returned my smile, her happy face beaming.  We talked briefly and left with a God bless you coming from both our joyful faces.  

It cost me nothing to share a smile with this dear lady, yet I felt like a million bucks as I walked away…and I dare say she did as well.

Sometimes smiles come easily.  Solomon talked about that in Proverbs 15:13 when he said, “A glad heart makes a cheerful face.”  

But at other times, I feel more like what Solomon described in the second part of that verse: “…but by sorrow of heart the spirit is crushed.”

Aaron had an epic meltdown last night.  I ended up in joining him on the meltdown wagon.  That’s never a good feeling, for me or him, but especially for me.  My spirit did feel crushed last night with sorrow in my heart.  Guilty, too, and tired.  Gary and I both were spent.

Aaron woke up happy today.  He doesn’t seem to feel the residual effects of these occasions like we do.  Later, he and I went to the store.  There in one of the aisles, I saw two women coming toward us.  In their cart was a little dog.  I knew instantly what Aaron would do.

“Aaron,” I quietly said, “do NOT pet that little dog.  Those ladies may not want you to do that, plus that dog doesn’t know you.”

Aaron, surprisingly, didn’t reach out to pet the dog.  But he craned his neck like Gumby as we walked by, and the ladies couldn’t help but notice.  Then Aaron stopped to stare some more.  

And they smiled.

So, I told them that Aaron loves dogs and asked if he could pet their little guy.

“Of course!” one of them said.

Aaron was very happy, I was relieved and thankful, and the kind ladies smiled and smiled as Aaron gently stroked the dog’s fur.  Turns out his name was Little Bit, which Aaron and I loved.

I thanked them as we parted ways.  Later, as we left the store, we passed one of the ladies and she gave us a sweet, warm smile as she wished us a good day…and I did the same.  

I could tell they liked Aaron and understood that he was special, of course.  This small interaction soothed my sorrowful heart, pushing out most of the sorrow and replacing it with gladness.

This time I was the one in the store with the burden, but two kind ladies took the time to share smiles and Little Bit with a tired mom and a chuckling Aaron.

And I believe God notices more than a little bit those kindnesses that do more than we know to lift a tired heart.

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!

The UNhappy Uncle Aaron

Well, it’s time for another Uncle Aaron update.  This is one that I have not wanted to make.  You can probably tell why from the title.

Before I begin, let me say once again that the reason I write this blog is not to just tell funny or heartwarming Aaron stories.  I began this blog years ago as an effort to educate people about special needs, autism and epilepsy in particular.  Especially the autism part that makes Aaron so very amazing and unique.

But there is another side as well…a side of Aaron that has a hugely difficult if not impossible time adapting to change.  Add to that issue the reality that Aaron is the center of Aaron’s world.  He gauges almost everything in his life on how it will affect him.  He has a heart as big as all outdoors in one moment, but in the next he might be having anxiety or a meltdown over something that isn’t going as he wants.

Our little grandson, Ryker, was born on December 21.  Now Aaron was Uncle Aaron for REAL!  But when we showed Aaron pictures, he backed away as if Ryker might reach out and slap him.  Aaron was nervous and acted like he really didn’t care about our new family member.  We knew then we needed to tread lightly as Aaron adjusted.

But look at Aaron’s smile when he opened this Christmas gift.  We were hopeful.

I flew to meet Ryker a couple weeks after he was born. 

Five days later, Gary and Aaron were flying in for a couple days.  But the morning they were to leave, Aaron had a full-blown meltdown.  The day before had also been rough. 

To top it off, the flight was delayed that morning.  Making the connection in Denver was doubtful.  A very upset Aaron having to wait a long time for an uncertain flight in a strange airport far from home…ummm, I don’t think so. 

Gary and I knew we needed to cancel the trip.  The relief in Gary’s voice was palpable and I totally understood. 

Aaron’s voice over the phone was thick with emotion and tears.  After Gary cancelled the flight, Aaron was filled with guilt over what he had caused.  He also worried about our reactions, and knew he should apologize.  He was pretty pathetic.  Here are Gary’s words in a text:

“He is 180 the other way now.  Walking him back from his sorrow is almost as difficult as getting him out of his anger.  Constant sniffles, watery eyes and suggestions in addition to the ‘I’ll go…I promised Mom and I promised Andrea’ there is ‘Can we get another airplane…can we drive, can we go tomorrow…dad, I’ll go.’  I feel like I just took a long trip!”

Gary continued:  “He has said several times, ‘But I promised Andrea,’ and ‘I need to say I’m sorry.’  So I’ve said that we’ll call her and apologize.  He walks to the phone and pauses, then says he can’t.  It’s too emotional for him, I think.”

Down in Texas, I was full of both anger toward Aaron and sorrow for Gary, whom I knew should be there to meet his first grandchild.  This picture should have included Gary.

It was good to talk to Gary, to Andrea and Kyle, and to have wise input from family and friends.

But most of all, the turmoil I felt was relieved by stepping back in the quietness two mornings later and reading scripture as I held precious Ryker.  I read Psalm 62:  “With You is unfailing love.” 

How can I not love Aaron since God loves me in my stubbornness? 

How can I not extend to Aaron the grace that God has extended to me?  It’s honestly easier to accept God’s grace to me than to give that same grace to Aaron at times like this. 

And like Gary also said:  “I often wonder what God sees when He looks down at me?  When I do not do what He would have me do or I don’t do what I should do, does He look at me like I look at Aaron?”

So, here we are.  I wish I could report that Aaron has turned around and has decided to love and accept Ryker.  But that hasn’t happened yet. 

My second night home, this past Saturday, we had a particularly rough night with Aaron.  There he was, sitting up in his bed, crying with brokenness and saying that he was afraid we would only love Ryker and not him.  Gary and I assuring Aaron of our forever love for him while fighting our exhaustion and frustration. 

Andrea is right when she said the next day that Aaron is just like a little sibling when a new baby comes into the home and the older child expresses jealousy.  Aaron has no filters and makes no attempt to hide his feelings. 

But here’s the thing and it goes back to autism. 

Aaron CAN’T filter or hide what is going on with him right now.  He is literally unable to do that. 

Out it all comes and we are left to deal with it.

Sorry this is so long.  Trust me, I could say a lot more but I’ll hush now and say thank you to each of you who have read this volume.

And a special thank you to those of you who have been praying for Aaron and for us.  Please don’t stop.  We need much wisdom and love.

Before I go, I just HAVE to share one more picture of our precious little grandson.   It’s what a Gramoo does, right?  😊   

Aaron’s Tears

Let me say right from the beginning of this blog post that I am sorry for writing another sad Aaron story.  As if The Flip Side – my previous blog – wasn’t enough, here I go again.  But I promise to have happy stories and huge Aaron smiles coming up.  After all, Halloween is right around the corner and Aaron is nothing short of over-the-moon excited about all things Halloween and pumpkins and…for the first time ever (really!)…a costume that he cannot WAIT to wear!!

In my last blog I tried to explain the impact that Aaron’s obsessions have on his everyday life.  In true autistic fashion, he will become hyper-focused on something that soon controls his decisions and his emotions. 

Water, as in the drinking of water, is another of Aaron’s obsessions.  Years ago, our daughter told him that there was such a thing as drinking too much water.  She was right.  In 2015, Aaron ended up in the hospital.  He was incoherent and unable to walk.  His sodium was dangerously low.

Over the years we have attempted to control his water urges but it’s very difficult to do so with a grown man who is able to get his own water…and is very sneaky about hiding water bottles, especially at bedtime. 

Three weeks ago, after routine bloodwork, I got a call from his doctor informing us that Aaron’s sodium was low again.  Aaron did a great job of reducing his fluid intake and in only one week his levels were normal again.  We praised Aaron for the good work, and he was quite thrilled.

But water obsessions are like an addiction.  The urges for lots of water returned, along with our removing bottles from his room and threatening to lock the garage refrigerator with all the water bottles inside.  Gary and I hadn’t figured out what to do about the faucets or the fridge water dispenser.  Ugh!!

Aaron has been doing better the past few days, though, and so we can only hope that he is learning to control himself.  But this past Monday at his day group was rough.

Aaron got some coffee at QuikTrip, and it accidentally was kicked over by a friend.  It spilled all over the floor.  He had taken water with him that day, but decided he wanted a bottle of water that was inadvertently offered to him.  A staff reminded him that he couldn’t have more water.  All of this was just too much, and the tears came.

He was totally dejected.  A staff took this picture of him in her office.

At first I smiled, but then I zoomed in, and the look on his face…

Well, it broke my heart.  And then I was crying.

If there was ever a picture of Aaron’s deep frustrations, this is it.

But why do I share this? 

Because I want others to know that these fixations of Aaron’s…and of so many others with autism or other issues…are life changing for them and are not to be flippantly brushed aside with a, “Oh, just get over it, Aaron.”

He can’t “just get over it.”

He is so deeply affected by his own fixations.

My blogging friend, Nancy, commented on The Flip Side that I wrote last week. 

“Dear Aaron,” she wrote, “it must be SO frustrating to deal with uncontrollable urges.”

Her comment touched me so much because she acknowledged that Aaron’s urges…his obsessions…are truly uncontrollable.  And she expressed empathy for that side of Aaron because of how deeply impacting it is in his life. 

How frustrating it is for him.

And I know that if I can look at Aaron through eyes of understanding and compassion, then hopefully he will see and feel the fact that he is understood and loved. 

Easy?  No.  Especially in the heat of the moment, or late at night when I am carrying three water bottles out of his room while he loudly protests.

Yet again, though, Aaron has shown me how much I am this way with my heavenly Father.  How I let my obsessions for things that aren’t good for me control my thoughts and my actions.

The mercy and grace that God gives to me is exactly what I need to show to Aaron. 

I goof up and God is there to forgive and to instruct, and to patiently love me through the repercussions of my repeated actions.

 I must do the same for Aaron…forgiving and instructing and most importantly, loving him through the repercussions he might face.

And maybe look into a water sniffing dog, as well?  😊

The Flip Side

I’m old enough to remember 45 rpm records.  On one side there was the recording of a major hit, usually a #1 song.  But then there was the flip side.  The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song.  Everyone wanted to listen to and talk about the fun, well-known song.

I started writing about Aaron and our life with him over 10 years ago.  My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks.  I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism.  I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.

Yet there is a flip side, just like those 45 rpm records.  I have written about it many times over the years but don’t want to focus on the negative.  Just like the popular #1 song, it’s fun to hear the funny side of our life.  But that flip side is just as much a part of Aaron as the other preferred side.

Yesterday morning the song on the flip side was playing loud and clear at our house.  I didn’t turn Aaron’s record over.  Believe me, I far prefer that first side!  But turn over it did! 

For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control.  Some obsessions seem to be permanent, and others might come and go. 

One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession.  I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs.  It’s not going to happen.  And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.

During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat.  It has become THE highlight of Aaron’s day.  He is completely fixated on this fun, simple outing.  Often some of his friends go as well, which makes it even more fun for Aaron.

So, there is the obsession.

Now for the disruption.  A meeting. 

Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year. 

Aaron hates meetings.

The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch.  Aaron cares not about one word that is said at the meeting.  He is too busy eating yummy food and trying to monopolize the conversation. 

I had told Aaron that we were having a zoom conference on Wednesday morning at his day group.  I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.

But on that morning, nothing mattered but Quik Trip.  He was super angry before he even got out of bed.  Nothing I said helped him.  He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…

On and on and on he went, accelerating into yelling.  He broke his closet door.  He hated this meeting.  He hated me. 

Then he cried.  If Aaron cries, he is genuinely and deeply upset.

I texted Barb at Paradigm, who can calm Aaron like no other.  She facetimed with Aaron, and he started settling.

As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes.  In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”

Then tears filled my own eyes.  I was spent but I was so touched at his apology, especially since I had not asked for one. 

I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it.  😊

So why am I telling you all this? 

It’s not because I like talking about Aaron’s flip side.  But this is our reality, especially Aaron’s reality. 

And the reality for so many other families that I know. 

Seizures are hard.  Other health issues are hard.

But behaviors…they are in many ways the hardest.  What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.

And on the staff at all the places that also care for our special ones.  Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns.  I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff.  Being spit on and kicked is not pleasant yet these amazing people stay the course.

Seizures cause brain damage that worsen the situation.  Seizure meds compound the problems with side effects that include worsening behaviors. 

How complex these things are!

How life-altering for the families!

How we love Aaron! 

We hurt when he hurts.  We struggle when he struggles.  We mess up and need to ask his forgiveness, as well. 

We all need grace, God’s and each other’s.

I have to fill out this behavior chart about the whole hard ordeal.  Stats and records must be kept.

What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.

I wish I could check a box that explained his sadness at his own behavior.  One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.

I’m thankful that God knows and that He gives His grace for each day.

And thankful for our complex and amazing Aaron…both sides.

The Other Side

 Aaron recently had a tooth pulled and an implant inserted.  He’s really done well with the whole procedure and with healing, as far as we can tell.  But as is the case in every single tiny part of Aaron’s life, autism rules. 

I mean, come on, this is the guy who won’t get up from a program until he watches the credits.  Who, if he has multiple music CD’s from the same artist, will only play them in the order of their production date.  Who will not start eating his popcorn at the theater until the movie we came to watch has actually started.   Who lays his special greeting cards on the bed at night while he reads, just like this.

Who keeps a log book of the time he goes to bed every night and the time he gets up in the morning. 

And who…get this…will only chew on one side of his mouth.  And you can probably guess which side that is.  The side which had the extraction and implant, OF COURSE!!!

This was a huge reason that my stress level was so high as I thought about his recovery.  Gary and I have coached Aaron and encouraged Aaron and demonstrated to Aaron and pled with Aaron to please…just PLEASE…chew on the OTHER side of his mouth.

“I don’t LIKE chewing on that other side,” he asserted over and over.

“So start early and get used to it!” we declared.

“But I can’t TASTE on that other side,” he told us over and over.

Silly parents.

Thinking we could even remotely win this battle was as crazy as…well, as expecting Aaron to chew on the other side of his mouth.

For Aaron…for anyone with autism…there is basically no other side to any matter.  There is one side…one way…to do and to see everything. 

Things came to a head last Wednesday night.  I had fixed Chicken Fajita Soup.  Aaron had eaten and enjoyed this soup in the past, but that was before he was being tormented with all this tooth business.  He was unhappy with the soup.  He was unhappy with me for fixing the soup and for insisting that he eat some soup.  Aaron’s unhappy led to my unhappy. 

That was one side of the matter.  The other side is that Aaron was looking forward to going on our Meals on Wheels route the next day and finally getting to eat out.  We were going to his favorite Mexican restaurant to see his favorite server and eat some soft enchiladas and of course to scarf down a side salad with no croutons and with TWO ranch dressings!

But instead, he had two seizures in the early morning hours.  He stayed home with Gary while I went on our route.  I felt sad for Aaron, but honestly, I needed that alone time.  The previous night had been rough.  I had not gone through Aaron’s normal bedtime routine because I was just so tired on every level.  Instead, we simply said a quick goodnight and I sat at my desk reading some Psalms and praying. 

Those are the times that I do not feel the joy of being Aaron’s mother but instead feel overwhelmed with the burden of caregiving.

I could feel my burden being lightened as I delivered the meals to my elderly clients that morning.  I pulled up to a new client’s house.  It was only my second time to take R. a meal.  She slowly came to the door with her walker.  We talked for a minute and then she began to tell me about her husband who had died a few years earlier.  She had been his caregiver for years before his death.  I was able to share with her some things about Aaron, whom she remembered from the week before.  I felt a bond with her, this new little friend who smiled when I told her that she didn’t look like she was 91 years old.   But then she talked about how lonely she was, and how she felt like she had no purpose…that she just existed.  And I told her that she did have a purpose in God’s eyes and how she had just encouraged me.

I had to run on and deliver more meals.  When I went to C’s house, he immediately asked about Aaron.  He had some things to give to Aaron.  He handed me a plastic pumpkin that was loaded with stickers and rocks that he had painted with Aaron’s name, along with several other items.  I thanked him over and over, and he told me that this was his ministry now since he couldn’t get out like he used to do. 

I told him that his words reminded me of my visit with R…of how she felt useless and with no purpose, but how we all have a purpose in God’s eyes. 

“What’s her name?” he asked.  “I’ll paint her a rock!”

I told him her name and he spelled it to be sure he had it right.  Then he said that his aunt had that first name, and how she lived a few blocks over…that she was alone and was 91 years old.

“That sounds like my new client,” I told him.

He gave me his aunt’s last name. 

And wouldn’t you know it?  His aunt is the new client that I had just talked to, who is so lonely and sad.  He said he would call her and visit with her.

This was a sweet gift to me from God, this reaching down and orchestrating the encouragement that our three hearts needed. 

For R and C were not the only ones who needed that touch from God on that morning.  I needed it, too. 

Yes, I could walk and drive and later go out to eat with Aaron.  I got to go home to a loving husband and live in the purpose that God has given me at this point in my life.

But sometimes God’s purpose for me is not easy, yet it IS all too easy to chafe under the yoke instead of remembering that God has said His yoke is easy when I wear it for Him. 

That’s the other side of God.  He teaches us so much under the stresses and burdens of the lives we live. 

He equips us for the life He has planned for us.

And He surprises us with sweet blessings when, and how, we least expect it. 

Let’s Talk (And Talk and Talk) About Lettuce!

Aaron had an appointment with his autism doctor this past Monday morning.  Dr. Ogden, a psychiatrist, oversees the aspects of autism that are not very much fun.  This means that she wants to talk about Aaron’s feelings and behaviors.

However, Aaron does NOT want to talk about his feelings or behaviors.  Years ago, we tried counseling sessions and it was a royal failure…not because of the therapist but because Aaron wanted to control the conversation and make it all about his movies and games and things like showing her the bump on his chest. 

Aaron would rather be poked and prodded and stuck with needles than to sit on a couch with mom and Dr. Ogden while explaining why he gets angry at home or his day group…why he reacts to people and situations with hitting or verbal insults…and what the solutions may be to said behaviors.

Aaron woke up that morning angry and frustrated, which is not the best way to go see the doctor who wants to talk about his anger and frustration.  Rarely is Dr. Ogden treated to Aaron’s humor or brightness.  Rarely am I treated to such fun Aaron attributes either on Dr. Ogden days until the visit is over and done…and we go to lunch. 

Lunch is the ONLY reason Aaron endures these talking doctor visits.

Aaron went from livid to lively as we drove to BJ’s for lunch.

You might say that Aaron can surely control his moods if he does so in a situation such as this.

But with autism, things are flipped.  Aaron’s moods control him.  You and I can perhaps overcome the heavy mood that weighs us down on certain days, but Aaron’s heavy mood puts him on a track from which he cannot jump.  He is stuck until something else redirects him.

And on Monday, part of his mood changer was in the form of lettuce.

When Aaron finished his French fries and scooted his chicken tenders around, there on his plate lay a nice piece of leaf lettuce.

Aaron tenderly picked it up, as if he was slightly scared of it.

Look at his face!  😊

Then he set it on the table.

“I’ve never seen this lettuce,” he calmly remarked.

“What do you mean, you’ve never seen that lettuce?” I asked.

“Well, it’s green!” he answered.

“Green?” I questioned.

“Well,” he explained, “some is black and some is green and some is white.  You usually get white.”

Oh, the intrigue of mixing autism with being color blind!

I can totally see that he sees all those interesting colors of lettuce.  Once again, Aaron caused me to pause and consider concepts that I would ordinarily never think about.

Aaron then held up the lettuce as if he was displaying a prized conquest.

Then he stared at it as he placed it on his plate again, studying it in such a serious way that I had a very hard time not laughing out loud.

“I didn’t order lettuce with my chicken strips,” he observed.

I explained that the green lettuce was there more for decoration than anything, which he thought was rather odd.

“What flavor is the green?” he wondered.

 I had to laugh at that one.

“Ummm, lettuce just tastes like lettuce, Aaron,” I tried to explain.  “Why don’t you eat it?”

So, Aaron very bravely took a small bite.

Which led to more bites as he looked postitively scared.

And finally, the lettuce was gone. 

Aaron survived!

I thought we had exhausted everything lettuce related there at BJ’s.

But the next night, Aaron’s sharp eyes spotted lettuce in a commercial.  Of all the food items on the screen, Aaron saw a piece of LETTUCE!!

“MOM!!” he yelled.  “There’s the lettuce I had in BJ’s!!  The brown one!!”

BROWN!!??

Now we’re on to BROWN!?

NOOOOOO!!!

I’m making an appointment with Dr. Odgen…for ME!!!

Our Texas Trip – Part 1

I heard an old George Strait song yesterday that could have been Aaron’s theme song leading up to our trip to Texas.  The song is titled “I Hate Everything.”  And oh boy, did Aaron ever!

The night before we left saw us reeling under all Aaron’s verbal blows.  He was livid at having to go with us, far preferring that we hire a caregiver to watch him while Gary and I went alone.  We were definitely with him on that as the evening wore on and we were worn out. 

The next morning was no better.  Aaron didn’t like us, the trip, the car, the snacks we took, Texas, Andrea, Kyle, their dogs…nothing.  The only thing he liked was his idea of staying home and that was NOT going to happen, so we were stuck with lots of “not likes” and plenty of anger. 

“I hate this vacation!!” he declared as we drove down the interstate. 

Aaron does not enjoy leaving his room, his house, his routine, his bed…his normal.  These things are such a part of what makes Aaron function in his normal that the process of uprooting, even for just a week, is nearly more than he can bear. 

Aaron accepted his inevitable doom as we drove farther away from normal.  Gary and I left him to his games, his music, and his movies as we quietly recovered.  How draining it all was!  I texted and messaged friends and family to please pray.  What a comfort it was to know that we were being brought before the Lord!  I know that many of my fellow bloggers were also praying, and I thank you so much for that. 

We stopped a few hours down the road at our favorite Oklahoma City rest area.  And there Aaron found a cute little stuffed owl that we let him buy.  He rubbed his hands together in his happy way as we paid, and Gary and I felt like doing the same as we saw a lifting of Aaron’s anger.  A chocolate milkshake and onion rings from the nearby Sonic gave him further reason to smile. 

It’s a very long drive to Houston, and then even farther to Andrea and Kyle’s house in League City.  Aaron had lots of time to think about the upcoming week of change and uncertainty that he felt waited for him there.  We saw occasional outbursts from him about how he still didn’t like this vacation. 

Finally, there it was…the Houston skyline.

And not too long after, we were pulling into Kyle and Andrea’s driveway.  We could hear their 3 adorable dogs barking as we got out of the car.  Soon we were sharing hugs and doggie pats, settling our things in our rooms, and sitting down to the pizza that was waiting for us.

What a relief it was to see that Aaron was relaxed!  He had immediately given the dogs their treats and toys we had brought to them.  As we sat around the table, I was so touched to see the total attention that Kyle and Andrea paid to Aaron as he talked non-stop. 

That attention to whatever Aaron is saying is one of his major love languages.  The things he talks about can be mind-numbing to us but not to him.  Listening, commenting, answering his many questions…that means more to Aaron than we often stop to recognize.  But Kyle and Andrea know Aaron, and they love him, and they showed it by listening with great interest to his talk of…whatever it was he was saying.  😊

Later, as we were getting ready for bed, Aaron had me fill his water bottle that he keeps by his bed to drink while he reads a book before he goes to sleep.  Got that?  Because that little fact is very important.

I gave Aaron his pills while he was getting in bed.  Not having any other water, I told Aaron to just drink some of the water from that water bottle. 

“No!” Aaron told me.  “I can’t drink that water to take my pills.  That’s the water I drink while I’m reading in bed!”

I was so tired.  I sighed, and Aaron heard me.

“You don’t understand,” he said, with some anger returning.  “No one understands me!”

It was like some of that water splashed me in the face as I was hit with a fresh look into Aaron’s heart.  Try as we might, sometimes it truly is very hard to understand Aaron. 

Or maybe we understand on paper, when things are calm, but in the middle of the moment when we’re stressed it can be very hard to slow down, take a breath, step back, and see the world through Aaron’s eyes.  Feel it with his senses. 

This whole trip was like going to Mars for him in many ways. 

“Please, Mom,” it was like he was saying.  “Don’t also make me use my bedtime water bottle for taking my pills.  Don’t you understand?!”

My rising frustration was immediately replaced with empathy for this son of ours who didn’t ever ask to have autism.  But he does ask that we try to understand him as he lives with the rigidity that autism causes. 

Just understand.

Push aside my exhaustion, my frustration, my expectations – and simply give him a separate glass of water for pill taking.

What a gift that was to Aaron!

And to me as I once again saw him relax.  I knew that I, too, had spoken Aaron’s love language.

I have so much to tell you about our time in Texas.  It was the best trip ever for all of us!  I’ll share more later, hopefully soon, in my upcoming blogs.

Bless all of you for reading and for caring!  Good night and sweet dreams.

The Autism Two-Step

Gary and I are planning a trip to Houston next month.  We’ll stay with our daughter and son-in-law (Kyle and Andrea), and then get to see our other son (Andrew) who will be there for an NHRA race. 

Happy, happy fun times are ahead!  YAY, YAY!!

Wait.  I forgot to mention that we plan to take Aaron. 

Angry, angry times are ahead!  YUCK, YUCK!

That was Aaron speaking.

As many of you know, getting Aaron to travel happily is a stretch.  We want to include him for the obvious reasons, especially the fact that he IS family and should be a part of family times. 

We’ve been making the hard sell and thought we were well on our way to traveling success.  But yesterday morning…

Aaron stood behind me early as I sat at my quiet time desk. 

“I am NOT going to Andrea’s!!” he angrily spoke.

First words out of his mouth did not bode well.

None of my soft words softened him at all. 

I ended up on our patio, coffee in hand, where Aaron soon found me and exposited further on the reasons that he will NOT make this fun, fun trip.

I escaped in the house for a few minutes.  When I looked out at the patio, Aaron was gone.  I didn’t see him anywhere.  Where could he have gone?!

Soon I saw him, across the yard sitting all dejected on our bench.  Sorry for the grainy picture.

He soon moved to the front porch, sadness all over his posture and face. 

When he rejoined me on the patio, he was crying.  When Aaron cries, he is truly and deeply upset. 

“I don’t want to leave this house!” he exclaimed, as if we were forcing him out forever instead of just taking a trip.

But to Aaron, home and the familiarity it brings is of upmost importance to him.  It’s a huge stretch to ask him to go someplace else and just “be happy.”

Aaron reacts to all the stimulation outside of himself in a far greater way than you and I do.  A long trip, another house, an unfamiliar bed, more people around, a different bathroom…just everything about traveling is huge and very uncomfortable to him. 

And if Aaron is uncomfortable, then everyone within range of his voice will be most uncomfortable, too.

It’s so easy to say he should just go and have a good time.

SO, SO hard for Aaron to do that very thing, starting with the “just go.”

Later in the morning, like a light went on, Aaron calmed down and became happy.  It wasn’t because finally, he came to his senses!

It was because he remembered the Indonesian submarine that sank.  Really.  Not that the sinking and all the death makes him happy, but all the facts of that incident have filled his fact-loving cup to the brim.

He talked about the submarine incessantly on Sunday.  He talked about it until the moment he turned his light off that night and went to sleep.  So yesterday morning, when he paused from his travel grief long enough to think of something else, his mind went back to the submarine that had so consumed him yesterday.

Ahhhhh, a subject that pleased him, odd as that sounds! 

Autistic persons are often brought back to their comfort zones by slipping into whatever groove is safe to them and meets their unusual interests.  As strange as it seems to us, Aaron was able to lay aside his angst about our upcoming trip by finding that groove, which on this day was the sunken submarine…

And then Trandoshians…clones…launch codes…Republic Assault Ship…Wookies…

It’s just the most fascinating and often frustrating thing!

Yet Gary and I must lay aside our desire to lecture as we slip with Aaron into his groove, talk about the very unique subjects that permeate his mind, and be ready for the next onslaught of travel anger.

It’s a delicate dance that we know all too well, accompanied by the music of Aaron’s world.  The band isn’t always in tune, at least not to us, but Gary and I had best just dance along and let Aaron lead.

It’s the Texas Two-Step!  Except for us it’s two steps forward…on a good day…and at least one step back.  Often more.

Last night, as Aaron still processed all things travel related, his face lit up.

“MOM!!  Can Kyle tell me all about the submarine?  Because if he can then I’ll go to Houston!”

So Kyle, who has a degree in maritime studies but has never worked on a submarine, has been given an assignment for which to prep before we come.  And his dad, Kent…who served in the Navy on a sub…will no doubt be invaluable.  Andrea said we should just have Kent waiting in the driveway when we pull in.  😊  😊

It’s good that we can all laugh. 

All of us except Aaron, who takes every bit of this very seriously. 

Time for me to get our day going.  Gary and I are taking Aaron to the zoo, which is close and does not require travel but also does not…to my knowledge…have a submarine.  Too bad!

Looks like it will be a beautiful day for a dance.