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?  😊   

Our Precious Gift Has Arrived

Early this past Wednesday morning our most precious Christmas gift was delivered, all wrapped and perfect in every way.

I’ll let him give his own announcement.

Ryker!  A name meaning “strong one” and also “rich.”  We pray that he will always be strong in the Lord and full of the rich blessings of God in his life.

Mommy and Ryker are both doing well.  They all came home from the hospital yesterday.  Our travel plans are still uncertain, but it goes without saying that we are very ready to meet and to hold our little grandson.

And now for Uncle Aaron.

Aaron knew that Andrea was in the hospital.  He knew when he went to bed on Tuesday night that the baby had still not arrived.  And he was not wanting to hear constant talk of the progress toward his nephew’s birth.

On Wednesday morning, I gave Aaron some time before I told him that his nephew was here.  Finally, I showed him this picture taken shortly after Ryker was born.

Aaron leaned toward the phone as I carefully watched his face.  He stared at the picture and then his face softened.  He had a little slight smile that flickered as he took in this first sight of his nephew.  Then he spoke.

“Ugly,” Aaron said.

Of course, I reprimanded Aaron gently and reminded him that this is his nephew.  His name is Ryker, I told Aaron, and he is a beautiful little baby.

Some would be shocked and offended by Aaron’s comment.  But Aaron was just using the only word he could summon to show that he is needing to adjust to this huge change in his life.  A change that he did not ask for and that he would rather not deal with. 

Aaron knows that this little baby will change everything in his world.  We all know that change is not welcome in Aaron’s set world.  No matter that this is a precious baby that is bringing the change.  To Aaron, it’s the change that is making him nervous and whatever is bringing that change is what Aaron will focus on and hope to ignore.

Like our friend Barb said, “Aaron’s world has changed even with his competition so far away.”

As that first morning continued, we tried to keep baby talk in front of Aaron at a minimum. 

“I don’t want to talk about the nephew,” he said.

At least Aaron was communicating his feelings, right?

Finally, Aaron referred to “the nephew” as Ryker.  Yay!!!

That night, as we prayed before bed, I thanked God for our little Ryker.

“So, I need to love Ryker?” Aaron asked after we prayed.

I knew that Aaron, in his factual way, was working out his feelings and his responsibilities toward this little family interloper…this change agent.  😊

Imagine my shocked delight yesterday, then, as Aaron and I visited two different friends.  This is what happened at each house.

“The baby came!  Mom, show them the picture of Ryker!  I LOVE Ryker!!”

I had a hard time pulling up the pictures because I was trying to lift my jaw off the floor.

It was so spontaneous and sweet. 

Aaron continued his excited recitation about Ryker, which also included some of his concerns about being The Uncle. 

But this is what Aaron needs to do.  He works out his discomfort and concerns with lots of talking, with many questions that we hear over and over, and repetitions of the same answers that he hears from every person who is willing to listen to him and respond.

Free therapy!

Thank you all for that!!  😊

And we thank you so much for all of your prayers, both for Ryker and his birth, and for Aaron and his adjustment.

We’re far from done with that Aaron part.

But we are very thankful for our precious Christmas gift. 

Baby and Uncle Aaron Update

I realize that it’s way beyond time for a baby update.  Speaking of time…where has it gone?!

Andrea will probably be admitted to the hospital this evening for an induction.  She is on blood thinner because of an autoimmune disease so in order to change and manage that medicine, her delivery had to be scheduled.  We would value your prayers for her and for their baby…our grandson!…during this process.

Aaron is up and down about being Uncle Aaron.  He is so focused on the issue that he is making himself nervous about it.  He talks and talks about being an uncle, to absolutely anyone who will listen…or who can’t help but listen as a captive audience in a check-out line, at their job, neighbors…

“I don’t WANT to be an uncle!” he declares. 

Then he listens as he is told once again that being an uncle is a fun job.  And that he will do a great job of being Uncle Aaron. 

“But I might have to change his diaper!” Aaron says.

And that has been the biggest subject of conversation for Aaron.  Changing diapers!

The nurse and staff at his day group have been so wonderful to help ease him through his diaper fixation.  Look at these pictures from this past Friday as once again the nurse let Aaron practice changing a diaper.  He’s always so excited to tell us that he passed the diaper changing test!

Added to diaper duty…which we have assured Aaron will not be required of him…is the actual trip to Texas to meet his nephew.  Aaron is not a happy traveler.  Therefore, his angst is increasing more than his excited anticipation. 

All these matters tend to muddy our own joy.

I knew this from the very beginning, though.

I knew that I would struggle with being far from Andrea during her pregnancy and during her delivery and recovery.

And especially, being too far away to meet my grandson quickly and often.

That’s why, on the very night that Andrea and Kyle told us back in May that a baby was coming, I knew that a struggle for me was ahead.

I know me very well.

The next morning, as I continued my study in I Timothy, I asked the Lord to give me a verse or a part of a verse to claim during these months…actually, years…ahead. 

God does not disappoint!

There it was!

A phrase in I Timothy 4:10 jumped right out at me and settled in my heart.

“…we have fixed our hope on the living God…”

I was so thankful!

My memorial stone was quickly written beside that verse:  Baby Kester, May 22, 2022.

How many times, when I have started down that path of wishing for things that are not to be…or I have begun to compare myself to others…or I have questioned God’s ways…this phrase has calmed and assured me.

For if I can’t trust God in this area of my life, when CAN I trust Him?

Then just last week, as I was in the book of Hebrews and reading about Moses in chapter 11, there it was again.

Verse 27:  “…Moses endures, as seeing Him who is unseen.”

Guess what the words “seeing Him” mean?

They mean that Moses’ eyes were fixed.

As in, “…we have fixed our hope on the living God.”

I was so touched that at the beginning of this grandbaby journey…and now nearing the end of the pregnancy…God once again told me to fix my eyes on Him.

This verb used in Hebrews refers to an artist whose eyes are fixed on the subject he is painting.  He focuses solely on the subject, not on the distractions around him.

Raymond Brown also points out that this word indicates a determined choice.

“Westcott says that it is used by classical writers in the sense of ‘looking from one object to another.’  We fix our eyes on the ultimate, not the immediate, on the eternal reward rather than our temporal gain.”

What I really want to get across in all of this is this:  I may be tired of my circumstances in some ways, but I am not hopeless!

I have fixed my hope on the living God!

God understands my desires and He knows my heart.

He keeps saying, “Patty!  Focus!!” as my eyes begin to wander to the distractions around me and I start to be discouraged or sad.

God is so good to me.  He understands and He does not demand perfection from me. 

Just trust, and hope.

Hope in the living God Who has a reason and a plan for every part of my life, grandbaby included.

Hope in the living God Who sent His own Son as a baby so that I could have that hope.

I hope I have happy baby news very soon!

And Aaron hopes that he really doesn’t have to change diapers!

Photo Worthy

We just finished the Thanksgiving season with all the family gatherings, delicious food, and lots of photo opportunities.  Now the oranges and golds are being replaced by the reds and greens of Christmas.  More pictures to come, for sure!

Already our social media is brimming with the pictures that others are sharing of their Christmas decorations.  So much beauty and creativity!  I love doing that every year, sharing the warmth and glow of the season.

But the brightness all around us, even if we only see it in a photo, sure can make the other side of life seem even darker than usual.

Other’s picture-perfect moments, if compared to some of ours, seem off-the-chart wonderful…and ours.  Well, the line on our chart is going in the opposite direction.  Way down.

Several years ago, I saw this picture of Mary and Joseph after the birth of baby Jesus.  It’s probably the most accurate portrayal of the nativity that I have ever seen.

The call of God on their lives to be the earthly parents of Jesus came at a huge cost to them.  They knew that their reputations would forever be tarnished.  Gossip and judgmental stares would be their lot. 

But can you imagine the long trip to Bethlehem for the census?  The discomfort, hunger, dirt, and fear? 

Then the baby being born in an animal stable.  We don’t know for sure, but did they have help delivering baby Jesus?  How Mary must have wished for her mother to be beside her! 

Can you imagine how alone they must have felt?  No family that we know of to surround them with love and care.  No beautiful nursery ready for baby Jesus.  No comfort of a soft bed for Mary or Jesus.  No kitchen full of food, or a meal train at the ready.

Joseph and Mary submitted without reservation to God’s call on their lives.  That special call might seem sweet and incredible to us but to them I can pretty safely assume that on most days it was anything but that.

Over this past week, mixed in with all the beautiful pictures of family gatherings, I was receiving other pictures from our dear friends.

 Dan and Wendy have loved and cared for their Elijah (Speedy) for many years.  Speedy has an extremely severe form of Epilepsy.  He was hospitalized yet again during Thanksgiving, for six days.

Lots of tests.

Still, lots of unanswered questions.

Always, always there is so much love from these amazing parents for their Speedy.

But the pain…the grief…is so real. 

Raw…and deep.

Wendy and I talk a lot.  We speak the same language that comes from special needs parenting.  We can be real with each other.

We understand what Dale Davis was saying in his commentary on the book of Luke when he talked about the benediction in Hebrews 13:20-21…about the part that says may God “do in us what pleases Him.”

That part is scary because we don’t know what it is that will please God.

Can we be like Mary, though, and submit to God’s will for our lives?

“May it be done to me according to Your word,” Mary replied as she was called to be the mother of God’s Son.

“Submission is preferable to consolation, for consolation pleases us, but submission pleases God.”  (Thomas Hog, 1692)

Let that sink in.

There are so many times that I would far rather have the photo worthy moments of family and fun and excitement and adventure and beauty to be the posts of my life.

Not the incomplete family photos. 

Not the tiredness…anger…frustrations…comparisons…resentments that often accompany this special-needs life.

How about you?  What is it in your life that you feel isn’t photo worthy? 

What would you gladly trade in for a more beautiful shot?

Somehow, though, I know that God looks down on our broken and He sees the very people and things that bring Him the most glory and the most joy.

He sees way beyond this temporal into a plan for each life that goes far beyond what we will ever know on this old earth.

And that’s what is eternally photo worthy.

Pharaoh Aaron

I see lots of people are putting up their Christmas trees and listening to Christmas music, and here I am just now finding a little time to write about Aaron’s Halloween.  Story of my life.  I’m usually a few days late and lots of dollars short!  😊

But I just couldn’t pass up the opportunity to share about Aaron’s very happy day, so here goes.

About a month before Halloween and based on his ongoing up-and-down obsession with everything Egyptian and King Tut and pharaohs, he decided to browse through Amazon where he found a pharaoh costume.  We were easily talked into buying it and Aaron was over-the-moon excited at the thought of wearing it to his day group’s Halloween party.

The fact that Aaron would even wear this costume was a miracle.  He doesn’t like how unusual clothes feel on his body or the attention he gets from others if he dresses differently, but for some reason he was totally pumped about this costume.  Just look at him!

He did say he wanted people to bow to him so that might partly explain his enthusiasm.  We quickly nipped that idea in the bud, however…and also refused to give him a staff to carry.  Multiple scenes of forced homage played through our minds as we gave him a determined, “NO!”

Aaron was very excited about wearing his “uniform,” as he called it, on the morning of the party.  I wondered what people thought as I drove down our city’s main highway with a pharaoh in the front seat…especially one that kept rubbing his hands and fingers together the way our Pharaoh does.   😊

Aaron was pretty nervous, though, as we parked at Paradigm.  I had reminded him several times that everyone would love the costume and would make lots of comments, and that he needed to be nice.  Aaron doesn’t like such attention even though he does plenty to deserve attention that has nothing to do with dressing as a Pharaoh.

Just as soon as we got out of the van, there was one of his staff in the parking lot. 

“Aaron!” she exclaimed, “I LOVE your Pharaoh costume!  You look awesome!!”

“Shut up,” he softly replied.

And there we go, I thought. 

Another lecture from me and inside we went, with me more nervous about it all than Aaron at that point.

Aaron had said he only wanted to stay for a few minutes and then go back home with me.  But once inside, as he heard everyone’s excited comments about his costume, he started to relax and enjoy himself. 

He finally decided to stay for the party, so I eased out and drove home, fully expecting to soon get a call from him begging me to come pick him up.  But that didn’t happen!

Instead, when I picked him up later that afternoon, several of his friends came running to the van.  All of them said the same thing.

“Guess what?!” they said, “Aaron won first place in the costume contest!!!”

It was so touching!  There they were, most of them in their own costumes, genuinely thrilled that Aaron had been the one to win first place. 

If anyone wants to see some amazing examples of true friendship, come with me to Aaron’s day group and I can show you plenty.

Finally, Aaron made it to the van – a HUGE smile on his face. 

“MOM!!” he almost yelled, “I won FIRST place, and I got THREE dollars!!!” 

It may as well have been a million dollars.  To him, it was! 

And to me, there was no dollar amount that could be placed on the joy I felt to see him so happy, and to see his friends so happy FOR him.

But his happy day wasn’t quite over.  I had to pick up a few things at the grocery store.  I offered to take Aaron home to let him change first, but no, he wanted very much to go inside Dillon’s and show everyone his costume.  I, on the other hand, was more than a little hesitant to go inside with Pharaoh Aaron.  Regular Aaron attracts enough attention.  Pharaoh Aaron…well, that puts the “Wow, look at him!!” stares I knew we would be getting on a whole new and very high level.

But hey, I’ve learned to just smile and enjoy the ride as much as possible so off we went.  Pharaoh Aaron and I marched in the doors like it was just another day in ancient Egypt.

And yeah, we got plenty of looks.  Aaron laughed and rubbed his hands together all the way through the store.  He saw and talked to Jody first at customer service…then turned to see Harold at self-checkout bowing to him (absolutely perfect!!)…ran to the pharmacy where Marc and Greg and most of the staff laughed and where Marc talked to Pharaoh Aaron like always…then all the way across the store to the deli where Cassandra and Blake were appropriately impressed…

 He did hear several people say, “Good job!” or “You look great!”   But most of the time he was blissfully unaware of the many stares and huge smiles left in his wake.

But I was very aware, and so very happy that I had decided to let Pharaoh Aaron go with me into the store.  I imagine he brightened the day for lots of people. 

And for those who just stared at him as if he had landed on earth from Mars…silly people. 

I should turn Aaron loose on those people.  He could most definitely educate them on both Mars AND Pharaohs. 

There are no Pharaohs on Mars!

But we sure enjoyed our day here in Kansas with Pharaoh Aaron!

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 Happy Uncle Aaron

Aaron has difficulty understanding family relationships.  He understands Mom and Dad, and brother and sister.  He struggles, though, with titles outside of our immediate family.  Sometimes his given titles for family members can be hilarious.  Such was the case when his sister, Andrea, was engaged to marry Kyle.  Aaron thought that Andrea would no longer be his sister, and this thought was intolerable to him.  One day we tried, yet again, to explain that he would not lose his sister but would instead gain a brother. 

“Well, I don’t NEED a Grandbrother!!” he angrily declared.

We waited to laugh until Aaron had left the room.

Other times, Aaron’s descriptions of family relationships can be suspicious.  This happened one recent evening as Aaron was trying to tell me something about Kyle.  You know…Kyle.  Aaron’s Grandbrother.

“Kyle,” Aaron said, “who lives with Andrea.  Dad said he’s the brother-in-law.”

“He is to you,” I replied.

“So Kyle,” Aaron continued, “Andrea’s father…..”

“No!” I interjected, “he’s her husband.”

“So Kyle,” he began again, “Andrea’s father-in-law….”

Please, if Aaron is ever trying to explain our family to you, come to us for clarification before you ever repeat what you think you have learned.

But Aaron’s new position as UNCLE Aaron has taken root in Aaron’s mind.  I’m still not sure he grasps exactly why he is the uncle, which is based on the fact that he is Andrea’s brother and as such then he is automatically the uncle of their soon-to-be born baby boy.  All of this gets pretty complicated to him.

Yet he has taken on the mantle of The Uncle as if it is his new designated title…something like The Duke or The Earl. 

Aaron is The Uncle.

Here is a typical conversation that Aaron might have with people.  Literally, with anyone he encounters, even strangers. 

“My sister is having a BABY!” he exuberantly declares.  “And I’m The UNCLE!!”

He makes this declaration loudly while bending over, rapidly rubbing his hands together, and grinning as broadly as he can possibly grin.

To say it’s surprising to all these random recipients is putting it mildly.  Yet it’s also endearing and precious.  Most folks respond with a huge smile and congratulations.  Bless them.

Time for me to insert a couple pictures taken last week when I was in Texas for Andrea’s baby shower.  😊

As you can see, the time is getting closer for Baby Boy to arrive.

And it seems that Aaron is getting a little nervous about what is expected from him in his new role as The Uncle.

“I’m not sure I want to be The Uncle,” he sometimes says.

“I’m scared to be The Uncle,” he has also said.

“I don’t know what to do as The Uncle,” he adds.

We assure him that being The Uncle simply means that his job will be to play with Baby Boy.  To love him.  To read to his nephew.

Oh wait.  We haven’t used that term yet…nephew.  Let’s not push these concepts too far.

After Andrea sent us her latest sonogram pictures, I shared them with Aaron.  He especially loved seeing Baby Boy’s foot…

And his hand.

Not long after, as we talked to our neighbor, Aaron remembered what he had seen.

“Andrea sent more pictures of the baby and I saw his hand and his foot!!” he very excitedly said.

“Oh Aaron,” Amanda replied.  “That’s so wonderful!”

“YES!!” he declared as he bent over and rubbed his own hands together.  “And now I’m HAPPY to be The UNCLE.”

There was that grin, huge and so cute!

Aaron will most assuredly have his fluctuations about all this business of his new title, The Uncle, being bestowed upon him.  As long as he continues to talk to us about his feelings then all should be well.

And most assuredly, he will continue to do just that. 

I Can’t Wait!

Waiting patiently for anything is not a strong suit of Aaron’s.  Whether he is waiting for me to get off the phone or waiting on a huge surprise, it doesn’t matter.  Patient waiting is a foreign concept to him.

This is why we often don’t tell Aaron of an upcoming event until shortly before it actually occurs.  Too bad he knows when his birthday is because he is in planning mode for months before the big day. 

Earlier this year, a big dinosaur exhibit was coming to town.  Gary and I decided to take Aaron and to make it a surprise, more for our sake than anything.  The big day came…tickets were bought…plans were in place…and finally I told Aaron that we were taking him on a surprise adventure. 

It wasn’t THAT long before we were leaving that I broke the exciting news to him, but oh my goodness!  I quickly realized that I should have waited until we were in the van and on our way before uttering a word about our surprise trip.

Aaron can hover better than any hummingbird or helicopter.  He hovered outside my door as I got ready.  He knocked and knocked on the door, asking if it was time to go yet.  He lingered outside the bathroom door as I dried my hair.  He stood right beside me as I brushed my teeth, asking questions and wanting me to answer even with a mouthful of toothpaste. 

“Aaron!!” I finally said, “quit being so impatient!!  Leave me alone and let me get ready.”

I enjoyed a few moments of blissful quiet…until he once again knocked loudly on my door.

“But MOM!!”  he exclaimed, “I don’t have anything to DO while I’m being impatient!!”

Let me say, I am so much like Aaron when God has me wait for something, especially something that I have prayed about for a long time.

Look at Isaac and Rebekah.  Isaac married Rebekah when he was 40 years old.  No children came, however, because Rebekah was barren.  In Genesis 25 we read that Isaac prayed on behalf of Rebekah and she conceived.

But guess how long it was before that happened?

20 years!

YEARS!!

Can you imagine the disappointment, over and over and over?

The sadness?

The comparing themselves to others who had HOW many children during the time that they waited…and waited…and waited on God to keep His promise.

As Dale Davis points out in God’s Rascal, The Jacob Narrative, Isaac’s non-chosen brother Ishmael had 12 sons.  What’s up with that?!

But Isaac didn’t just idly or impatiently wait.  We’re told that he prayed on behalf of his wife. 

The Hebrew term used there means that Isaac didn’t just pray FOR his wife.  It indicated that he prayed in front of her…in her presence.

I found Isaac’s action in prayer to not only be very encouraging but also very precious.  He led Rebekah and he joined her in her pain…in their pain…as they waited for God’s answer.

Sometimes things seem so hopeless.  We don’t see answers coming.  It’s so easy to lose heart, especially when we have prayed and prayed and prayed.

I love this verse.

Right now, Aaron is laying on our couch downstairs.  He had three seizures this morning.  He is almost 38 years old and has had seizures since he was 7 years old.

I look at him as he ages, and I see the effect of all these years of seizures…of the toll they have taken on his body and on his mental abilities. 

But I know that as much as I love Aaron, God loves him even more.  And God loves me. 

He loves us and He has a reason that I will probably never know on this earth for all that Aaron has suffered.

So, I cry out to God.

And I know that God’s inclination is to lean down and hear my cry. 

Isn’t that a precious picture?

He joins me in my pain and in my waiting.

Am I always patient as I wait on God?

No!

But unlike Aaron, there IS something I can do while I’m being impatient and that is to pray.

And to praise, as David continues in Psalm 40.  Sing a new song of praise, which will be a testimony to others.

After all, “How blessed is the man (or woman) who has made the Lord his trust.”  (Psalm 40:4)

Gotta run.  Aaron is awake now and is planning our evening already.  😊 

The Normal Road

As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel.  We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident.  I told Aaron that I would need to go another way home after I dropped him off.  This concerned him but I assured him that it was no big deal.

All was clear on the highway and the exits when I picked Aaron up later that afternoon.

“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”

It took me a second, but then I understood what he meant.  He was very happy as I turned into our exit that we could go up the road that we are normal with.

Aaron was completely unaware that he had just perfectly described his life with autism.  And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.

Aaron wants to stay on the road that he is normal with.  Any variation of that road will most certainly be full of potholes and unexpected detours. 

The road that Aaron is normal with is only at home.  It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.

His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us.  He takes more books than he will read in three years.  More music than he will listen to in the week that we are gone.  Way more food than he will eat and way more games than he will play.

And he takes way more out of all of us than we feel that we can give.

Patience and understanding are our goal on every trip, but they are often stretched very thin.  If only my scales would show how thinly I am stretched!  😊

One evening we were setting the table for supper at our daughter’s house.  I gave Aaron one fork just like all of us were using.  But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.

Always, always, Aaron will take two forks and two spoons and two knives.  He doesn’t use them but what we need to understand is that for some reason he does NEED them. 

Again, here is a perfect description of living with autism – this time in picture form.

You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware. 

Aaron needs more.  He can’t even tell you why he does but he indeed must have more.

He must have more than the rest of us in so many areas of his life.  Sometimes it’s hard to remember that.  It’s hard to be patient with him and understanding of a need that we don’t have.  A need that seems so unreasonable. 

But the complexities of autism are not to be trifled with. 

There are many ways that we as parents can guide and train Aaron, and we have.

But we must be wise in choosing our battles.  Some battles we will always lose, and such a loss is not worth it.

The road that Aaron is normal with is also a road that Gary and I travel right alongside him.

I guess you could say that over the years we have a new normal…one we could never have dreamed of having.

Some days the trip is long, and we feel near empty.

Then we see a view like this, and our hearts are full again.