Category: Special Needs Children

Do You Know Me?

One evening last week, Aaron had a money gift burning a hole in his pocket.  He knew exactly what he wanted, so off we went to Walmart to look at throw pillows.  He wanted one to rest his book on while reading at night.  Soon we were walking down the main aisle toward the check-out lanes, Aaron happily holding his very soft black pillow.  

Walking toward us was a cashier whose lane we have used several times when we have checked out.   While in her lane, Aaron, as usual, talks and talks to her while she scans our items.  He discusses with her what we have bought..what he likes that we have bought..does she like those too?…what he wanted but Mom wouldn’t let him get…would she want those?…why or why not?…and anything else that he can quickly grab out of thin air before it’s time for us to walk away.

Aaron spied her as she walked toward us.  She gave us a nice smile.  I said hello and smiled in return.  Then Aaron stopped beside her and stared.  She wasn’t quite sure what to do.

“Do you know me?” he asked her.  

“Well, I scan your items sometimes and I remember you,” she replied, relaxing some and smiling at Aaron.

“It’s almost my BIRTHDAY!!” he exclaimed.

She wished him a happy birthday as I took his arm to lead him on and thanked her.

Oh, Aaron.

So unabashedly himself.  

Of course she remembers you, I thought to myself.  LOTS of people remember you.

But then it hit me.  It’s one thing to remember Aaron.  It’s quite another thing to KNOW Aaron.

“Do you know me?” he asked.

Aaron wasn’t diagnosed with autism until he was 14 years old.  We remember many incidents during those years before his diagnosis.  We remember his behaviors and quirks increasing but everyone attributing it to his seizure meds or the effects of the seizures themselves.  It was an extremely stressful time.

His autism diagnosis answered so many questions for us.  Off we set on this journey of understanding autism as it related to Aaron.

More importantly, however, we began to really understand Aaron through the tangled web of autism.  

In other words, we were getting to know Aaron for the complex person that he is.  

To REALLY know him.

It’s fun to know the funny side of Aaron.

We smile at the quirky side of Aaron.

And to enjoy the things that Aaron enjoys.

All those traits, and many more, are easy to roll with and relish.

But…and there’s always a “but,” isn’t there?

But there is an equal part of Aaron that can be very stressful and upsetting.

Sometimes, the upsets are mild, like when he uses multiple utensils for every meal.  Or doesn’t even use all of them but he needs each of them for reasons that are very real to him.  

Or how he can’t have just one CD of a particular artist that he is listening to but must have all of them out of the cabinet at the same time, strewn around the van or hidden under his bed.

How his routine and schedule are so important to him, to the point that he has a very hard time yielding any of it to our schedule, or to understand interruptions.

How hard it is so many times to wait on us when we’re going somewhere.  His impatience turns to anger, which can spread quickly to us.  

And then he carries that anger on some days to his day group, where he takes it out on others and has a no good, very bad day.  Here he is on one such very bad day.

It’s heartbreaking to see his struggles.  

“Do you know me?” I imagine him saying to us or to those who work with him.

Knowing Aaron…really knowing Aaron…takes lots of time and experience.  Lots of hard knocks and long nights and balancing acts.

Many days it’s one step forward and two steps back.

“Do you know me?” he asks again.

Sometimes we answer yes through gritted teeth, through tears, or anger and harsh words.

And then guilt.

Guilt that even though we know Aaron, we don’t always remember how he will react to even the most mundane things…things like a facial expression, a tone of voice, or a hand movement that pushes him over the edge.

But there is another thing we know.  

We know that God designed Aaron to be truly unique.  

God gave Aaron to us to love and to care for.  

And God knows that we need His strength and wisdom every single day.

“Do you know me?” Aaron asks again.

“Yes, Aaron,” we reply.  “We know you, and we will always remember that we love you in all your variety.”

My Choice

Well, I can tell you right now that this blog subject won’t be what some people think it’s going to be.  I just realized how this title sounds as I typed it.  Hmmmm…

Anyway, let me pop some bubbles right at the beginning by sharing this sign that is hanging directly above my quiet time/study desk where I sit nearly every morning, coffee in hand and Bible open.

It reminds me that every day I have a choice to make.  Throughout my day I can choose how I will allow the events of the day to affect me. 

And no single person creates more events in my life than Aaron.

In one sole day you might very well find me laughing, crying, yelling, sighing, worrying, cringing, thanking, guessing….

That’s just the condensed version.

 Last week on our Wal-Mart shopping trip, Aaron took off at a fast trot to go check out the candy and nut aisle.  

“Don’t run!” was all I managed to remind him before he was out of earshot.  

I hurriedly completed my shopping.  I then took off at my own fast trot to see what was occurring on aisle 20.

I rounded the corner to this scene.

Add blushing to the list above.

There sat Aaron cross-legged on the floor as he searched the very bottom shelf for something.  Red Hots, I soon learned.  Beside him he had stashed jelly beans, peanuts, and cashews that he hoped I would buy for him.  Also beside him was a very kind associate named, very appropriately, Joy.  

Joy had found Aaron sitting on the floor.  Being concerned, she walked to Aaron and asked if he needed help.  Boy, was Aaron glad to see her!  Usually when he needs (or just thinks he needs) help, he barges toward an associate and pretty much yells, “HEY!!”  

I’m usually found nearby, or a few steps behind, hissing, “AARON!  Don’t say HEY!!  It’s rude!”

By this time, said associate is typically a mix of alarmed and annoyed which soon is replaced by amused. Maybe more amused by the look on my face rather than by Aaron’s?  Very likely.

Back to the candy aisle.  Joy soon found Red Hots up on the very top shelf, which gave Aaron much joy.

Me too.  Oh, my joy didn’t come from the Red Hots.  My joy came from Aaron being so unabashedly Aaron. Aaron’s going to do what Aaron’s going to do, no matter how many times I correct and redirect and follow him around hissing out instructions that he mostly ignores.  

I thought it was just the most perfect thing that this very sweet associate’s name is Joy.  I do believe that God was smiling.  

And again, I was too.  Others around us were very understanding as they waited or turned around.  Aaron has lots of lessons to teach everyone around him, like it or not.

I posted a little piece about this on Facebook and our neighbor across the street sent me this picture.

Here’s what she said:  “Seeing your Facebook post about Aaron sitting on the floor in Wal-Mart reminded me that I took this the other day.  He was excited to come tell me something.  He really does bring joy.  It’s always fun to hear what he’s going to say!”

Aren’t we very blessed?  Our neighbors all around us are great with Aaron.  

I thanked Gina for being so good to listen to Aaron.  I also reminded her that because of this, Aaron will just keep going over.  HaHa!

Well, we had lots of joy going on and it was really sweet.  I was reminded of this verse:

            “A joyful heart is good medicine…”.  (Proverbs 17:22)

And that’s a very good thing because I know my blood pressure was getting somewhat high on Aisle 20.    

It’s Aaron

After being out of town for several days, Gary and I returned on Monday afternoon.  Aaron was happy, happy to have us home.  But by Tuesday morning he was wishing that we were gone again, and our friends were back at the house watching him.  Re-entry to real life is often difficult for Aaron.  

And he is not the only one who finds it difficult!

Aaron was belligerent on Tuesday when faced with the reality of returning to his day group.  He was very verbal and confrontational.  It’s the side of Aaron that tests my mettle to the core.

It’s hard not to respond in kind to him.  Sometimes I do say more than I want to say, sadly.  As we drove to his day group, I really laid into him.  Not in a damaging or harmful way, but in a truthful way about how his words hurt us and why.  There are concepts that he needs to hear about how to love us even when he is angry.  How to recognize and acknowledge all we do for him instead of thinking only of himself. 

The night before, I had watched a video with him about a triangle UFO.  It’s the last thing I wanted to do.   He had called us repeatedly while we were gone, talking about this UFO video he wanted me to watch with him.

“MOM!!” he exclaimed, “it’s a triangle UFO video that’s 44:42.  Would you watch 44:42?”

Those are the minutes and seconds that he memorizes on each YouTube video that he watches, by the way.

He was ecstatic that I agreed to look it up and then to actually sit through 44:42.

So, on that next morning full of anger, he was full of remorse as I spoke truthfully to him.  As we neared his day group, he spoke softly.

“I’m glad you looked up the triangle UFO video.”

I was quiet.

“I’m glad you looked it up,” he repeated several more times before getting out of the van.

It was Aaron’s way of trying to say he was sorry.

A few hours apart worked wonders for both of us.  He was very happy when I picked him up and I was responsive once more.  I took him to the lab for some bloodwork, where he had to be poked in each arm and he flinched…something he rarely does.  My heart went out to him.  He deals with so much, even more internally in that brain of his than outwardly sometimes.

The technician gave him the plastic tourniquet to keep.  He was delighted.  I watched him walk around WalMart later, both arms with band aids and the tourniquet dangling from his fingers as if it was a prized possession.

I thought of how those small gestures…those items insignificant to us…bring him such joy. 

And it hit me that there are countless times that the seemingly insignificant, daily actions of Aaron bring us such joy…of how much I need to focus on those moments rather than the outbursts that bring hurt.

It’s Aaron at Walmart trying to hide from me because he has BOTH crescent rolls and biscuits in his hand that he wants me to buy.

It’s Aaron sitting on the floor of the store, totally oblivious to anyone around him as he checks out the peanuts on the bottom shelf.

It’s Aaron hardly able to wait until he could show me how much his sunflowers had grown while we were gone.

It’s Aaron helping clean under the kitchen table after supper.

It’s Aaron telling me he took his snacks to the snack drawer before bed.

It’s Aaron thrilled to pieces that I let him buy TWO boxes of Texas Toast.

It’s Aaron loving to do science experiments.

It’s Aaron super excited about his new volcano lamp.

It’s Aaron overjoyed because he won this light-up bouncy ball in Bingo, which he took today to show all our Meals on Wheels clients.  

It’s Aaron sitting alone in the mulch, breaking pieces into a container the same way he has done since he was a little boy.  There goes my heart.

It’s Aaron’s unique sense of style, unaffected by current trends or other’s opinions.

It’s Aaron’s unique impact on my life that I want to treasure and relish each day, even despite the hard times.  

After The Storm

Two nights ago, I awoke to bright lightning flashing outside our window.  Then came the crashing thunder.  Two hours later, we had a repeat as another storm roared through.

A few hours later, the sun was shining as I looked out my favorite window.  The view was so beautiful.  The leaves on our huge oak tree looked crisp, the grass was so green, and the sky was beautiful with unthreatening clouds.

Even though the storms earlier were loud and a little scary, the benefits were well worth the dark experience of the night.  We need the rain.  And I was so blessed by the very pretty view that morning.

So often, the aftermath of a storm carries with it refreshment and joy.

The same is true in the life of a believer.

We don’t often understand this side of heaven just why we go through trials of life.  But what we do know and understand is this:

“…I am the Lord and there is no other, the One forming light and creating darkness, causing well-being and creating calamity; I am the Lord who does all these.”   (Isaiah 45:6-7)

These promises to Israel continue:

“For thus says the Lord, just as I brought all this great disaster on this people, so I am going to bring on them all the good that I am promising them.”   (Jeremiah 32:42)

The God of Old Testament Israel is our God today, and His character and purposes have not changed.  He has a reason for every circumstance and event in the life of those who know and follow Him.

“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”   (Romans 8:28)

There is so much work that God wants to do in us.  Even Jesus learned obedience through the things which He suffered.  (Hebrews 5:8).  How much more do I need to learn the same?

Let me close with sharing one recent experience.  We were having a particularly rough behavior evening with Aaron.  We couldn’t understand why.  Then after supper, while I was at the kitchen sink and Aaron was a few feet away, he suddenly went into a seizure.  These drop seizures are both terrifying and dangerous.  He falls like a tree and has been injured several times over the years…staples, stitches, a lost tooth, CAT scans to check for concussions, and so forth.

Because I was so near and heard the seizure start, I was able to turn to him and grab him as I yelled for Gary.  I lowered Aaron to the ground as he fell while Gary ran in and was able to help.

Later, feeling depleted and very emotional, I sat in a chair near Aaron as he slept and recovered.  And I prayed.  I was able to practice what God has taught me over the years.

“Let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.”   (Colossians 3:15)

I was able to be thankful…thankful that I was near Aaron when the seizure started…that Gary was able to help…that Aaron was not injured…and that later he was his happy self again.

Honestly, I don’t say, “I’m so happy that Aaron has seizures!”

No.  But I can, because of what I know about God, be thankful for both the ways that God takes care of Aaron and for all that God has taught me over the years as I have learned to completely trust Him with this son whom we love so much.

It’s like looking out that window after the storm and seeing that the storm has brought to me another layer of growth and beauty despite the fear and struggles.

I pray the same for each of you today as you gaze out the windows of your life at the works that God has done because of, and after, the storms.  

Act Happy, Mom!

Over the years of blogging about our life with Aaron, I have sought to inform and educate others about the complexities of autism.  There are so many parts and pieces to autism…so many ways that Aaron’s life, and therefore ours, is affected by how autism makes him function.

Oh, if you only knew how many times I have thought or even asked this question of Aaron:   “Can’t you just…….?”  

Fill in the blank.

I have even had that question asked of me concerning Aaron.

“Can’t you do something with Aaron?!”

Or this one:  “Have you thought about….?”

Or:  “Have you tried….?”

Now, I do not mind helpful advice or constructive criticism.  However, one must be careful to truly understand a condition before offering advice on handling that condition.

Even Gary and I, with our years of experience, can at times find ourselves floundering amid Aaron’s stubbornness about certain situations.  

Aaron is very wrapped up in his own comfort and routine, sometimes to the detriment of everyone around him.  Anger on his part can set in quickly when his perceived needs are not being met in the way that he wants them to be met.  

It’s narcissism at its finest…or not…but is born out of Aaron’s deep-seated requirements of life, not out of pure selfishness.  Some incidents seem incredibly selfish, though, and there are times to handle that situation.

Such was the case one evening not long ago.  I was preparing a meal for supper when Aaron came into the kitchen and asked what we were having.  The meal wasn’t one of his known favorites.  And he let it be known right away that he was having none of it.

I did not budge when he asked if he could have something else to eat.  I reminded him that I do not run a restaurant and that he could eat what we were eating.  I told him I knew he would like it if he just gave it a try.

He was most unhappy!  

After several trips into the kitchen, where he angrily informed me that he hated that food and would NOT eat it, I knew that nothing I said was going to turn him around.  In fact, any words from my mouth just added fuel to the flame.

This is when I have learned to shut down and no longer respond to anything Aaron says.  I do not talk to him or respond to him.

And he detests that.  It makes him very uncomfortable when Mom doesn’t talk to him, but the silence is the best way I have found to defuse him and to show him that I am done with this scene.

As supper was nearly ready, he began to follow me around, talking a lot and hoping for a response from me.  Finally, he asked a question that needed an answer, so I responded in a very flat voice.  Aaron knows that this voice of Mom’s is still an indication that he has crossed the line. 

“Mom!” he urgently said, “you should answer like you’re happy that I’m telling you!!”

I had to smile at that one and was glad that my back was to him.

But you see, Aaron is clueless about how his treatment of us affects us.  It’s good for him to see the effect in a tangible way, as in my silence and lack of enthusiasm.

He did eat a little dinner with us, and we were able to talk to him some about his attitude.

Then later, Gary and I slipped out to the porch for a little time together.  We both needed a breather.

But we weren’t stealthy enough, for Aaron heard us and soon darted out the door and made himself right at home with us.  There he sat, seemingly oblivious to what had happened earlier, all primed and ready for a long talk with his captive audience.

Of course, he didn’t talk about his earlier behaviors.  He didn’t talk about his feelings, and he most definitely did NOT talk about our feelings.

Aaron wanted to fill our ears with his latest discoveries from reading his book on UFOs.  He wanted to talk and talk and talk about Area 51, asking tons of questions and waiting for our answers.  

Ah, Aaron…slipping into his comfort zone and unaware of the fact that this is not our comfort zone at all.  

Such is the give and take of living with autism.  My silence had pushed Aaron out of his comfortable place.  Now his talk of aliens and UFOs and Area 51 showed us that Aaron was ready to get back to normal…his normal, that is.

And yet his normal has in a strange way become our normal, too.  We know that Aaron is happy again when his conversation turns in these strange ways.

I guess Gary and I have become a little strange ourselves sometimes.  

And strangely enough, we didn’t have to act happy.  

We truly were just as happy as little aliens in a UFO!

Love, With a Little Sad

Recently, Aaron has been listening to the Phantom of the Opera movie soundtrack.  He has seen the movie and heard the music before, especially listening to the CD over and over.  But time has gone by, and Aaron doesn’t remember what the story is about.

During lunch a couple days ago, as he asked questions and I told him the story, I realized once again the sadness wrapped up in the Phantom’s life.  I couldn’t hide it from Aaron if I was going to tell the story correctly.

“You know, Aaron,” I finally said, “it’s really in many ways a sad story.”

Aaron thought for a minute.

“You have to see it as love,” he said.  “Love with a little bit of sad.”

His comment blew me away.  I was legitimately speechless.

I’ve thought a lot about what Aaron said.  I realize that he, in those few words, so perfectly described our life with him.

This life of parenting a special needs child is not a cake walk.  Yet we know that what God has allowed in our life is for a reason…and God’s reasons are always good.  Maybe His reasoning doesn’t make sense all the time, but God is good in all that He does and allows.

Gary and I have choices to make every day as we parent Aaron.  Yet no matter what moments we face each day, we love Aaron fiercely.

What is our focus?  Is it love, or is it sad?

We can’t ignore the sad.  That would be denial.

We’re sad when Aaron has seizures.

Sad when sometimes those seizures cause serious injuries.

Sad when his seizure meds make him so sleepy and tired.

Sad when he must be poked with needles so often.

We’re sad when his behaviors break his own heart.

Sad that he still refuses to travel to meet his new nephew.

But wait.  I need to remember what Aaron said.

Love, with a little bit of sad.

We want our life to be lived with a major on love and a minor on sad.

Like the love we felt for him last night as we stood outside watching the beautiful lightning to the west, hearing the distant thunder along with Aaron’s deep happy chuckle.  

Seeing the love he has for animals of all sorts.

The way he takes huge delight in the unusual.

We love the joy he shows in sharing.

And the big smile he gives when I pick him up from his day group.

I love how he looked on the exam table at his last doctor’s visit, reading his UFO book that he couldn’t wait to show his doctor.

I love how he leans way over to listen to the music that comes out of the self-checkout register at Dillon’s, oblivious to all the stares.

I love his random love notes. 

 

And that he’s willing to take an occasional picture with Mom.

I love looking out the window and seeing this scene.

I love that behind every hard, frustrating, stressful, and sad moment…I can hold on to this fact – that God has given us our special Aaron to love and care for.

We have to see it as love…love with a little bit of sad.

Oddballs

I want to start this blog by sharing with you a picture I took recently. 

OK.  You might be wondering what on earth these little balls are and why they are worthy of a picture.

Let me begin to explain by showing you another picture.

Many of you might recognize that this second picture is a bowl of Good and Plenty candies.  Aaron loves Good and Plentys.  He always pours his treats into a bowl and eats them one by one, usually while he sits in his favorite chair as we watch a show at night.

One recent morning I walked through the family room and saw little balls on the shelf of the end table beside Aaron’s chair.  I knew right away what they were.  Those little balls in that first picture are Good and Plenty candies.

BUT those little round candies are not oblong shaped as good Good and Plenty candy should be.  Therefore, to Aaron, they are unacceptable. 

They are oddballs.

And oddball candy is not to be eaten, at least not by Aaron.

Same candy…different shape…not allowed.

I absolutely love seeing such tangible pictures of the fascinating way that Aaron’s mind works.  This is classic evidence of the structured world that Aaron desires. 

Classic autistic behavior.

Look how he even set the pink candy in its own place, not in the row with the white ones.  Again, order is important.

Aaron can usually control the structure in his world when it involves food, silverware, blankets on his bed, when to turn the television off at precisely the correct moment, watching the credits at the end of a show, and on and on.

Unfortunately, Aaron’s desire that his world be carefully monitored for his own personal satisfaction runs into a problem.  The problem is that living breathing people with feelings don’t always fit into Aaron’s normal.

In other words, people can be like those defective candies. 

Oddballs.

But Aaron cannot set human beings aside into neat little rows when they don’t fit into his definition of acceptable.

He also cannot always keep his thoughts and frustrations about oddballs to himself.

Like the day years ago that he and I were eating lunch with someone Aaron didn’t remember, but she knew Aaron and was so excited to see him.  So excited that she kept leaning toward him to talk very happily with her exuberant voice and with her eyes very big. 

He finally leaned toward her from across the booth, opened his eyes as wide as he could, and exclaimed, “DON’T DO THIS!!!”

Oh dear.  I was so embarrassed.  This person works with special needs, and she understood, though she was taken aback.  But I knew that Aaron was getting very uncomfortable, so it was like watching a train building up steam before a wreck.

Then there was the time that we went with Aaron to parent night at his school.  He was to introduce us to each of his teachers.  At the last classroom, while waiting in the hall, we wondered why Aaron was beyond excited for us to meet this teacher.  We soon found out why.  She had a very pronounced spiked hairstyle, which Aaron found to be extremely interesting…odd, you might say.

“MOM!!  DAD!!  This is ______.  She looks like a HEDGEHOG, doesn’t she?!”

Well, well.

Gary and I were humiliated (although Aaron had a point 😊).  We immediately corrected him, and the teacher was immediately angry with Aaron…and it was not the finest of our parenting moments.

We have our times here at home, too, when Aaron sees us for the oddballs we are to him and he lets us know it. 

When one of us is talking to Aaron about something more serious and we change the shape of our eyes: “DON’T SQUINT YOUR EYES!!”

When I was talking to him one day and made a stirring motion with my hand, which upset him.  I asked why.  “I just see things you do are weird.”

When I was singing funny and could tell he didn’t like it, so I told him I was just having some fun: “I don’t like your fun.”

When I sniff and he is afraid that I’m upset: “ARE YOU CRYING???”  He really can’t handle crying from other people, especially me.

There are many more examples that I could include, but you get the idea. 

And if you hang around Aaron long enough you have a very decent chance of becoming an oddball, too.

But don’t worry.  You will be in good company.

Aaron, after seeing a picture of Shakespeare: “Shakespeare didn’t dress perfectly.  He dressed weird!”

As for Einstein in another picture seen by Aaron: “He has WEIRD hair!”

Maybe being an oddball isn’t such a bad thing after all, right?

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.

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.