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.

In the Eye of the Storm

Life has been pretty tempestuous and I’m not just talking about a whirling mess out in the Gulf by the name of Laura.  We’ve had our own commotion under our roof.  Hurricane Aaron has been building for several days and the other night we were inundated with his storm surge.  Honestly, though, my outburst was stronger than his by a long shot!

Ah, the wonders and joys of autism.  Aaron wants…needs…routine and predictability and all his things in all their proper places.  Upheaval of any kind creates stress for him, and stress for Aaron inevitably creates stress for Gary and me as his parents and caregivers. 

The stresses around us that cause us angst do affect him because his level world is easily tipped by what Gary and I are going through.  Aaron expects us to stay as level as he needs us to be, but we all know that life just isn’t that way.

When Aaron sees Gary and me off kilter, he will then seek to identify what is bothering us.  Then that person or that event becomes the enemy because they have affected him.  Aaron doesn’t mean to be narcissistic.  That delightful character trait is part and parcel with autism.  We know that fact in our heads but sometimes the understanding doesn’t transfer to our hearts during the turmoil.

Several events have impacted us over this past week.  A hoped-for trip to Indiana to see our son didn’t happen.  Disappointment over changed plans crept in.

Then last week we grieved with our daughter and son-in-law, Kyle and Andrea, over the sudden serious health issues of one of their beloved dogs.  Aries started having seizures.  The next week was heart-rending as he declined drastically.  So, this past Friday they made that awful end-of-life decision.  Gary and I were so sad, but I also think that seeing our children’s grief increased our own.  We loved Aries, and we love Kyle and Andrea, so our sorrow was two-fold. 

This is the prayer Kyle prayed the night they said goodbye to Aries:

Aaron really can’t handle seeing us cry but try as we might he did see our tears over the loss of Aries.  We now had the double whammy of changed trip plans and heartbreak over Aries.

However, we were only halfway done with disruptions.  Out in the ocean, Tropical Storm Laura was brewing.  Kyle and Andrea live to the east of Houston, near the water.  Kyle works on a fast responder ship, and those huge vessels don’t stay in the harbor during a hurricane.  Fast forward to today:  Kyle is now on the ship up in one of the channels and will stay there indefinitely.  Andrea is home alone with their other 3 doggies.  She knows she is welcome to go to Kyle’s parent’s home a little further inland but it’s not best to leave your home if you can possibly stay.  So, Gary flew to Houston yesterday and is there with her, which is such a comfort.  His retirement a month ago is a blessing!

Aaron senses our concern about all this hurricane business.  He usually likes to watch the progress of hurricanes, but not this time.  Why?  Because Gary and I are spending too much time, in Aaron’s opinion, monitoring Hurricane Laura…wondering about Kyle and Andrea…planning Gary’s sudden trip…and talking on the phone.  No matter how calm we are, all this time and talk is unusual to Aaron.  Sometimes it takes time away from Aaron. 

On Monday evening, as I finished looking once again at the Weather Channel, Aaron became rude and I became undone.  I lost my temper and lost my cool, and Aaron reacted, and we had our own tempest in the family room.  These things do happen, especially when we are stressed, but then the tension and guilt are increased.  It takes some doing to un-do it all. 

Aaron paced in and out of the family room where I still sat.  We tried to watch a Little House episode but he just could not settle down so he chose to end it and go to bed.  But he kept coming back to me with one more word of anger.  Then he finally stood in front of me.

“I know what I’ll do!!” he belligerently said.

And with that, he stuck his tongue out at me. 

I tell you, I just had to laugh.  He didn’t mean for it to be hilarious, but it was.  I kept my laugh to a minimum and somehow he didn’t get more angry, but it was just really funny.  

I knew when Aaron was finally OK by what happened soon after.  He came bounding once again into the family room, stared at me, and then said:

“Mom?  Do you know what a sea mine is?”

A sea mine?!  But I was actually quite relieved to be talking about sea mines.  Aaron is playing Battleship on his computer, so talk of sea mines was perfectly normal for him.  It showed that he had at last moved beyond our anger and beyond the unsettled surroundings of his world, and he was back to his normal.  I didn’t care one bit about sea mines but trust me, at this point sea mines were a very welcome reprieve!

Aaron’s normal rarely involves human emotion or important life events that impact us.  These issues cause him distress, so he quickly reverts to talk of battleships and sea mines and gun turrets and whatever else comprises his focus at that time.  Gary and I so often shake our heads, but we know we must jump on board with Aaron in order to preserve our peace.  It’s both very frustrating and very fascinating to see how his mind works. 

There is one more thing going on.  Aaron’s bedroom remodel begins tomorrow.  Gary and I had to empty it before Gary left for Houston.  That caused some anxiety, to say the least.  But beyond that is the fact that now Aaron is in another bedroom where all his things are NOT in their normal place. 

“Mom!!  This bed isn’t like my bed!!”

“Mom!!  I like my lamp better!!”

“Mom!!  I don’t like this hard floor!!” 

“Mom!!  I hope I’m not getting a hard floor!!”

“Mom!!  I want to keep my carpet!!”

“Mom!!  My chair doesn’t work right on this hard floor!!”

Shall I continue?

No.  But Aaron will, trust me.

I took Aaron to Outback yesterday after we dropped Gary off at the airport.  Aaron was in his happy place…a restaurant with his choice of food!  As we munched on the warm bread and butter, Aaron looked down at the two pieces left on the cutting board.

“Mom,” he said, “you can have this one and I’ll have the other one.”

I laughed because the one he generously gave to me was the much smaller piece while he got the bigger one.  And it just reminded me of how life is with Aaron.  He doesn’t mean to be this way, but he does require the bigger part of our time and of our understanding and of our attention. 

Therefore, Gary and I require a bigger part of God’s grace and God’s understanding and God’s strength on days such as we have had this past week. 

And God’s forgiveness when we blow it. 

I’m so thankful that He understands.

And I was so thankful to see Aaron smile yesterday as I was able to restore some of his normal.  It’s my responsibility, yes, but also my joy as his mother and his caregiver.

By the way, in the eye of the storm there is peace.  God’s peace, which never fails, is there for me. 

I’m thankful for that, too, during each storm!

To Ignore Aaron

Anyone who has been exposed to Aaron will no doubt agree on this:  Aaron is very hard to ignore!

Aaron is going to do what Aaron is going to do.  He is mostly unaware and uncaring of the reactions he generates from others.

Whether he is sitting in our front yard relaxing as he breaks apart the mulch:

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Or dressing in this hilarious “fashion” for all to see:

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Or deciding to pet Moe, our neighbor’s cat, on Moe’s level:

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There is generally no stopping Aaron from forging ahead with his version of living life to the fullest!

Aaron struggles with waiting on me to do an activity with him.  I often don’t tell him that we’re going somewhere, for instance, until shortly before we leave.  If I tell him that we’re going out, then he hovers and gets very impatient with me.  Best to just dash out the door quickly than to endure the anger that his impatience causes.

But some activities are set in stone, for the most part, and Aaron will begin his hovering when HE is ready for whatever that event is.  Every night we watch a program together.  Most often it’s a series that we are going through.  Right now we’re watching Little House on The Prairie.  Nearly every night Aaron will begin his impatient waiting for me to be ready to watch our next episode.  He will stand outside my bedroom or bathroom door, talking and questioning and getting angry if I don’t hurry.  One recent evening, I told him to NOT wait outside my door.  I was pleased that he obeyed, and I could get ready in peace and quiet.

But when I rounded the corner to go downstairs, here is what I saw:

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Oh Aaron!!  😊  😊

“I’m waiting on you to get ready!!!” he informed me.

And once again, Aaron was impossible to ignore.

When Aaron has crossed the line with his behaviors, though, one way to get my point across to him about his disobedience is to ignore him.  I become quiet and I barely answer his questions, if at all.  It’s hard for me to do that but I have learned that being ignored by me speaks more profoundly to Aaron than all the words in the world that I could use.  He knows he has really done wrong and that he must make it right.

Last week Aaron and I were in a store.  We were checking ourselves out when I ran into a problem and needed help.  When the attendant stepped around the corner to help me, I saw that it was someone I have come to know there.  Aaron knows her, as well.  This person has a hard life, and sometimes she is very down.  She doesn’t hide it, and when she approached me, I knew that she was having a bad day.  She didn’t engage me at all when I spoke to her.  I can handle that – no problem.

But Aaron doesn’t get those cues from people that you and I see.  He noticed that her hair was different and so when she walked away from me, he followed her.  When she stopped a short distance away, with Aaron at her back, he rubbed his hands together as he happily spoke to her.

“Your hair is short!!” he declared.

No response from her as she kept her back to Aaron.

“Your hair is short!!” he tried again.

Still no response.

I called Aaron back to me, telling him that she was busy, and he didn’t need to bother her today.  I knew he was confused, though, because typically she engages him with interest and kindness.

As for me…I was so angry.  For someone to dismiss and ignore Aaron has always been a very hard thing for me to handle.

I stayed pretty riled up about it for the rest of that day.  I talked to my husband and to my daughter about it later.  I stewed and brewed for quite some time.

But God, as He always does if I but listen, told me that I should not only pray about my reaction but that I should definitely pray for this sad person.

And that I should remember a verse from Psalm 37 that I had recently studied:

Cease from anger and forsake wrath; do not fret; it only leads to evildoing.”  (Psalm 37:8)

Do you know what the word “fret” means?  It means “to get burned up.”

And that’s exactly how I felt!  It burned me up to see Aaron being so blatantly ignored!

Yet what I needed to carry away from this situation wasn’t my load of anger, or my justification for it.  I needed to release my feelings to God and just put a stop to my desire to get even…to report her…to make a point.

Getting steamed about our hurts often leads to evildoing, as that verse says.  We certainly are seeing that in our country today!

How much better it is to talk to God about it, and to follow the example of Jesus…who, though reviled, did not strike back.

It’s a choice I am allowed by God to make.

Do I choose peace?  Or do I choose conflict?

It’s best to follow Aaron’s example, too.  He does bounce back quickly from his anger and hurt, most of the time, settling in to the next thing that captures his attention.

So, like Aaron, I’ll find and choose the joy…in whatever shape it takes.

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She Took It All

One of Aaron’s favorite things to eat is a Cheddar Pasta Salad from the deli at Dillon’s.  The name has actually changed to Cheese Pasta Salad, but to Aaron and to me it’s still Cheddar Pasta Salad.  Aaron always gets a large size, watching carefully to see that the container is filled to the brim.  We go so often that we’ve gotten to know some of the deli workers, who can always guess what we want when we walk up to the counter.

Yesterday afternoon Aaron asked me if he could have a Cheddar Pasta Salad, so off we went to run an errand before the Chiefs – Titans football game, and then end at the Dillon’s deli.  Things were going smoothly, and I was happy that we would make it home in time for the game.

It doesn’t ever seem to matter how carefully I plan our entrance into Dillon’s.  Aaron always seems to somehow get ahead of me as we make our way to the deli counter.  He is definitely on a mission!

The problem is that he will often push in front of people if there are others standing at the counter.  Therefore, he and I are in a foot race as I try to head him off at the draw, before he offends the others who were there before us.  Aaron doesn’t care one bit about waiting his turn when it comes to his Cheddar Pasta Salad.  He doesn’t notice if people are staring or are angry, if they sigh or if they edge closer to the counter.  He only has eyes for the food behind the counter window, looking quickly to see if there is any Cheddar Pasta Salad.

Yesterday there was a mom there with her very cute little girl who was maybe four years old.  I made it to the counter just a few steps behind fast Aaron, just in time to touch his arm and remind him that someone was before us in line.

Aaron was very happy to see that there was some Cheddar Pasta Salad in the tray.  “Look, Mom,” he said.  “They have Cheddar Pasta Salad!”

“That’s what we’re getting, too!” said the friendly mom.  “It’s her favorite!” she added as she looked down at her smiling little daughter.

In an instant, I knew that we were in a dilemma.

In an instant, Aaron had figured out that there was NOT enough Cheddar Pasta Salad for both him and the little girl.

And in that instant, Aaron’s face fell.

“Oh boy,” I thought to myself.

The mother was telling me that her little girl just loved the pasta…that she never ate the broccoli…that the mom ate the broccoli…

“There won’t be enough for me!!” Aaron blurted out.

“Yes, Aaron, there will be some for you,” I assured him, while I felt dread creeping up my spine.  How far would Aaron go in his disappointment?  Would he become angry?

The mother also told Aaron that they weren’t taking all the salad, but Aaron could see that there would not be enough for his large container.

He stared down toward the floor, not making eye contact, as he tried to process the fact that these interlopers were taking HIS Cheddar Pasta Salad!

Their transaction done, the mother told us to have a good day and told Aaron to enjoy his salad.

“Shut up,” Aaron softly replied as he continued looking down at the ground.

I was horrified!!!!

The mother and cute daughter were walking away as I sternly told Aaron to say thank you to them.

He refused.

I told him through firm lips that he would NOT get his salad if he didn’t say thank you.

The girl behind the counter, new to us, was waiting on my order.  I fumbled out that we would take the rest of the Cheddar Pasta Salad.

“She took it all,” Aaron flatly said.

My face was flaming.

The mother and little girl were a short distance from us.  The container…the medium size and not the large…was being filled with the last of the Cheddar Pasta Salad.

“THANKS!!!” Aaron suddenly bellowed.

And the mother turned and smiled at us.  I wondered if she could see the distress on my face, and on Aaron’s as he processed taking home a medium container.

Not a LARGE!!

Then the mom and her daughter turned and walked right behind us.  I touched her arm and whispered to her.

“I don’t know if you heard what he said, but I’m so sorry,” I told her.

She said she didn’t hear anything.  I softly told her that Aaron has autism, but I could tell she knew.

“Don’t even worry,” she kindly said.  “My older daughter works at Open Doors with autism all the time, so I totally understand.”

Relief washed over me…partly because they hadn’t heard Aaron’s comment and largely because she was so kind.

I thanked her, turned back to Aaron…who was staring dejectedly at his medium container…and then she said to me:

“You’re a very good woman.”

I was so surprised!  I thanked her.

And I blinked back tears and swallowed the growing lump in my throat.

I was so happy that now Aaron was holding a jar of Chili Fig Spread, excited about his new find, moving on to the next thing as he always does.

He is so oblivious to other’s emotions.  So clueless as to the stress he inadvertently creates.

SO unaware of how embarrassing and wrong it is to tell someone to shut up!

But he did just that.

And he will do it again.

So, we give the lectures and we live the example, but none of that can permanently re-wire his brain.

I picked myself up off the floor, figuratively speaking, as I gathered my wits about me and picked up the pieces of my shattered motherly pride.

Yes, my son is the one who told you to shut up.

But this is our life with Aaron.

Aaron, who wants life to fall into place his way and when it doesn’t, is hardly able to do anything but to tell the offender to shut up.

But he DID say thanks!!  I’m so thankful for that!!

I DID give him his Cheddar Pasta Salad.  Look at his sad face, though.

 

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His medium…not large…Cheddar Pasta Salad.

“She took it all,” he said over and over as we walked through Dillon’s.

“She did NOT take it all!” I reminded him over and over.

We actually got a lot in return at that deli counter.

A large serving of kindness goes a long way!

 

MERCY!! AARON!!

I’m a southern girl.  Well, from southern West Virginia – born and bred – so no matter what the Civil War folks say about my home state, I still consider myself to be from the south.

I guess that’s why sometimes I just want to look at Aaron when he’s being a particular form of disagreeable and just say, “MERCY!!  AARON!!”

And then tell him that he just needs to hush!!

When I talk to Andrea or Andrew on the phone, Aaron invariably barges in the room and wants to talk.  This happened on Saturday evening as Andrea and I were gabbing away.  I knew Aaron would persist until I caved, so I finally put the phone on speaker and off Aaron went.

He was particularly fixated on Luigi’s Mansion 3 – his newest Nintendo Switch game.  And he was even more fixated on going over Luigi and Gooigi.  I think I spelled that right.

He wanted Andrea to know who Gooigi is.  What Gooigi is made of.  What color Gooigi is.  What Gooigi looks like.  What Gooigi does.

Andrea, ever patient with her brother, commented on everything Aaron said.  She even asked questions…good questions…which fanned Aaron’s flames and off he blazed.

Talk, talk, talk, talk, talk.

It took me awhile to put out the flames.  I usually have to end the talking by telling Aaron to say goodbye, after he has pushed me away several times from taking back the phone.

Never once does he ask about Andrea or Kyle, or Darcy or Oakley or Aries or Siggy…all dogs, by the way.  😊

For some reason on Sunday evening, Aaron kept referring to that phone call.  He declared that I only wanted to talk to Andrea…that I never talk to him (REALLY??!!)…that I would hardly let him talk to her…and so forth and so on.

Everything is bad to Aaron when he gets like this, including the fact that I am a bad mom.  I eventually shut down when this happens, meaning that I do not fan the flames of Aaron’s anger by things I say.  Even my eyes – “Don’t squint your eyes, MOM!!”…or my voice inflections, can increase his anger.

Nothing that I say helps.  Nothing that Gary says helps.

Aaron’s lack of empathy and his inability to connect the dots like we do is a most frustrating part of his autism.

The next morning, weary and bothered, I thought of how my friend – a manager at Aaron’s day group – deals with these issues on the day after they occur.  Aaron often doesn’t want to go to Paradigm on that “next day” after he has blown it, but Barb always reminds him of an important truth.

“It’s a new day, Aaron,” she says.  “We just start all over and don’t let yesterday bother us.”

Thinking of that…of a new day…reminded me also of the wonderful promise in Lamentations 3:22-23:

The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.”

God’s love and mercy to me, no matter how much I sin, is new every morning.  And I know that I must also face every new morning with Aaron in the light of God’s loving-kindness to me.

If God is so loving and kind to me, how can I be any less to Aaron?

That next morning was still a little rough on Aaron’s part.  And then when I picked him up in the afternoon, as I watched him approach the van, I saw him stop and turn, running back into the building.

He returned, holding a paper that blew in the wind as he ran toward me again, his face all smiles.

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“MOM!!” he said as he got in the van.  “I colored this for you!”

With great delight he handed me this picture:

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I was so touched.  So amazed.

Amazed that Aaron sat still long enough to color.

Touched that he wanted to mend our fences in such a sweet way.

And both amazed and touched that it was a cross he colored for me.

You see, it’s because of the cross that I can even begin to love Aaron as I should, especially when he is at times so unlovable.

It’s because Jesus died for me, and because He is my Savior, that I AM loved and that I CAN love.

And I love how the old King James Version says that verse I wrote earlier.  “It is because of the Lord’s mercies that we are not consumed, because His compassions fail not.”

I am not consumed by hatred and sin or God’s judgment, but only because of God’s love and mercy.

Love and mercies that are new every morning.

Like I said, how can I love Aaron any less when I am so loved by God?

One more thing.  The cross is also the reason that I can bear the sadness and fear of Aaron’s 3:00 a.m. seizure today, and another one later.  The reason I can see him sleeping again now and know he may likely seize again.

The reason I can bear up under the disappointment of our doctor day being canceled…because doctor day means, to Aaron, eating out day.  And he does LOVE eating out!  It’s always a fun and happy day, but not today.

Aaron goes through these disappointments and rough days often, which means I do as well.

But like the verses above said, great is God’s faithfulness.  He doesn’t leave me to handle it all alone.  He is right beside me, my best friend, with His mercies and love that give me His peace that passes understanding.

Speaking of understanding, I won’t even go into all the detail of having to wash Aaron’s favorite fuzzy blanket today because he spilled coffee on it…and how it’s the only blanket that he wants to use on his lap when he’s at his desk…or on the couch.

About trying other blankets.

Rejecting those blankets.

Checking his blanket in the wash.

Observing me putting it in the dryer.

Following me around the house because without a blanket he can’t sit or lay.

MERCY!!!   AARON!!!

Fixing the Broken

Last night I felt like this:

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Mangled.  Broken.  Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group.  Mixing all the various special needs can at times be volatile.  Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair.  I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later.  I hoped that maybe, just maybe, they really weren’t beyond repair.  The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

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WOW!!  Talk about a miracle re-do of what I thought was hopeless!  She received my profuse thanks with a smile on her face and the comment that she loved a good challenge.  I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually.  I believe that about covers it.  And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty.  Talking about being truthful, Aaron is just that…at least in his mind.  He has few filters, and totally does not get social norms.  He is often unaware of other’s feelings.  He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning.  His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired.  I get angry.  I did last night, when Aaron who had been happy decided to be rude just before bed.  He and I didn’t have our normal cheerful bedtime routine.  He was still out of bed, on his computer, when I went to bed.  I didn’t even challenge him.  I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron.  Somehow, it’s easier to show compassion for ones I seldom or only occasionally see.  Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add.  I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile.  He even received the hug I offered!  We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights.  I had intended to sit there and pray, but sitting with Aaron was important, I knew.  We talked softly about some of this and some of that.  Then Aaron decided that he could take his pills, but I reminded him that it was too early.  He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm.  I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule.  Gone was my caring at all at that point about the 12-hour rule!  In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh.  Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot.  But today Aaron let me laugh.  This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters.  Or the 12-hour rule.

But it was good.  Very good.

It was our normal.

And it was a gift.  A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

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But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.”  (Psalm 147:3)

 

 

 

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

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The Rat

It all started one recent night when our almost-broken DVD player became the totally-broken DVD player.  Aaron and I were watching the next Blue Bloods show that was in Aaron’s rigid schedule for the evening.  Aaron kindly paused the program while I went into the kitchen.  Something about that pause became the something that pushed our ailing DVD player into its grave.  Even Gary, our go-to he-can-fix-everything guy, came but could not fix.  And as I watched Aaron’s frustrated reaction, I rightly guessed that he would also be very difficult to fix that night.

I was very correct on that one.

There are times when Aaron handles life’s interruptions of his routine with amazing calm and grace.  That night was not one of those times. 

I didn’t help, either.  When Aaron became more belligerent, I became more frustrated.  I don’t do end-of-the-day meltdowns very well, especially as I get older.   I finally told Aaron not to be a bully.  But I didn’t end there.  I also told him not to be a bully brat.  I thought it had a nice ring to it, you know. 

Aaron did not think it had a nice anything.

Now we not only had to go to bed without finishing our Blue Bloods show, and knowing that the DVD player was dead, but we also had to walk up our stairs for our goodnight routine harboring anger.  I could have made amends and gone right to bed with no problem. 

Aaron could not.

And so began an age-old bedtime dance that we hadn’t done together in a long time.  It basically consisted of Aaron refusing to do what is normally done and insisting on doing what is unacceptable. 

His angry comments included: 

“I am NOT helping put the oil in the diffuser!”

“I am NOT taking my medicine oil!”

“I am NOT saying goodnight to you!”

“I am NOT going to bed!”

“I am NOT letting you kiss me goodnight!”

“I am NOT a bully brat!”

I stayed as calm and flat as I could be in my reactions as I went about my own bedtime routine.  Aaron continued his fuming by going into his room and closing his door, only to open it seconds later.  He would stomp up the hall and come into my room, hurling another angry comment at me.  One time he closed his door normally, but immediately reopened it so that he could slam it shut the second time.  I had to smile at that one.

But I wasn’t smiling at any of the rest, for sure.  I was sorry it had come to this…I was very tired…and I was totally aware that Aaron’s outrage could continue for some time.  Therefore, I just went to bed, pulling my covers up and acting as if everything was normal.  Gary had not come upstairs yet, so I left my door open. 

Sure enough, Aaron clomped up the hall again and came into my bedroom.  He didn’t even seem to blink as he saw me in bed and so changed his direction, standing on Gary’s side of the bed.  He glared down at me under the covers and continued his verbal barrage.  Then he was off, slamming his bedroom door before soon reopening it, and repeating the same action again and again.  In my bedroom, hovering over the bed as he angrily talked, and off again.  I don’t even know how many times this occurred.

Then all of a sudden, the next time Aaron hurried to my room to glower at me, he didn’t.  He didn’t hover and glower, but instead he sat on the bed beside me.  He started rubbing his hands together and then he said, “Mom, do you know what Nanomites are?” 

Really.  Nanomites.

And just as seriously as I possibly could, with no hint of surprise or laughter or tiredness,  I told him that I did not know what Nanomites are.  There we were, in the dim light, talking ever so diligently about Nanomites.  We didn’t talk about our anger…our hurt…our frustration with each other…our disappointment in the dead DVD player…or our needed apologies.  We talked about Nanomites.

And all was well. 

Aaron went back to his bedroom.  I stayed in bed, waiting.  Soon he was headed back up the hall, but this time he came around to my side of the bed.

“Here Mom,” he said.  “I want you to have this.”

A couple days earlier, I had taken Aaron to Dollar Tree.  You would have thought I had let him enter heaven for a few minutes.  He bounced from aisle to aisle, SO excited by his many finds, but definitely the MOST excited by this big, plastic, long-tailed, red-eyed rat! 

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I rolled over in bed that night, and there on my night stand was that long-tailed, red-eyed rat.  I knew as sure as ever, then, that things were right with me and Aaron.  He had given me what at that moment was most precious to him…his black, plastic rat. 

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He laughed and bent over as he rubbed his hands together…a sign of his pure joy.  And I thanked him.  I thanked him as sincerely as if he had placed a huge vase of roses on my night stand.

Aaron wanted me to come and say goodnight in the way we always do, so I did.  Then as I was in my bathroom right after that, I heard Aaron once again walk up the hall.  He knocked on the bathroom door, and when I answered he said, “Mom, I’m sorry.”

“I’m sorry, too, Aaron,” I replied.  “I love you.”

“I love you,” he mumbled as he hurried off and back to bed.

I kept that ugly plastic rat on my night stand for a couple days.  It reminded me of so much.  It was an unusual picture of my relationship not only with Aaron, but also with God.

How many times have I been angry with God over a problem or a situation in my life?  Maybe not even full-blown anger but frustrated and not trusting Him totally.  How many times have I held onto hurt, or worry, or fear, or whatever else it may be that I want to harbor close to me.  Things or people or events that I don’t want to relinquish to God? 

All the going back and forth with God doesn’t accomplish a single thing.  It’s only when I yield to Him and to His control in my life, tell Him I’m sorry if I need to do so, and then give Him my thing that to me is precious…that I want to keep and coddle…only then will I have true peace.  Also, only then will I have open communication and sweet fellowship with God again.  Only then will I see what’s on the new path upon which He has set my feet.

Who knew what that silly red-eyed black plastic rat would teach me? 

Leave it to Aaron…and to God…to take the bad times and make them full of good.