Category: Special Needs Children

Skittles and A Super Bowl Ring

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

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

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

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

You can probably guess what it was.  

A very BIG container of yummy Skittles!!

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

How I laughed when I saw these pictures!

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

What a very nice thing for them to do!

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

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

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

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

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

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

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

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

“Yeah!!” he eagerly answered.

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

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

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

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

Kindness is also shown by a smile.

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

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

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

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

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

Pass the Skittles, Aaron!

Good in My Nazareth?

Tis the season for the Christmas story to be at the forefront of people’s lives.  And in the forefront of that story is the little town of Nazareth.  Gabriel was sent there to tell Mary that she was the one whom God had called to bear and give birth to His Son, Jesus.  

Nazareth…a very small dusty town.  Pretty much a place one would pass by rather than linger there for any reason other than to perhaps get a drink of water.  Larger, more exciting towns were nearby.  

Years later, when Jesus was calling His disciples, Philip went to find Nathanael.  He told Nathanael that they had found the One foretold by Moses…Jesus, of Nazareth.

Nathanael’s response?

“Can any good thing come out of Nazareth?”

That seems to be the reputation of Nazareth in a nutshell.

But Mary lived there, and her betrothed, Joseph.  Two unknown people in an unknown town…a town nowhere mentioned in the Old Testament or early Jewish literature.  

But the angel said that Mary had found favor with God.

How?  How do you make a name for yourself in Nazareth, of all places?

But that’s just it.  Mary didn’t set about to be noticed by God.  She wasn’t trying to do great things.  She simply lived her life for the glory of God in every mundane daily task that was a natural part of living in Nazareth.

Less than an hour ago I stood by Aaron as he had his third seizure in four hours.  This one was very hard.  My heart hurts.

Afterward, I sat by our Christmas tree and pondered this life that God has given me.  In many ways, I can say that this is my Nazareth.

I have had a taste of the “other” side of life.  Awards, travel, lots of ministry, etc., etc.  

But as time has gone by, my world has narrowed a lot.  The life of a long-term caregiving parent is not exciting.  It is not a life that others point to as they wish they had MY life.  

And all of my fellow caregiving friends know “the look.”  It’s the look that crosses a person’s face when they ask what you do or if you can join in this or that, and you tell them your situation.  So often there is no real understanding.  Sympathy, perhaps.  Compassion, sometimes.

But it’s like they don’t know what to do with you.  

Kind of like being from Nazareth.

But God has a purpose for each of His children in His kingdom.  Even us Nazareth folk.

For God says that He works all things for good in the lives of His followers.  

I have good purpose, right here in my Nazareth.

For every piece of wet bedding washed, every meal cooked, every bathroom cleaned, every doctor appointment, favorite show watched and game played, every story listened to for the 500th time – is just what God has for me to do where He has put me.

He put Aaron with us.  I can look at my life with him as my ministry or as a misery.

Human nature makes us feel that we’re not really being of value unless our calendars are full of events and we are free to come and go as we choose our opportunities.  And this is wonderful for many people.

But for my other Nazareth people…whatever your Nazareth is…know that there ARE good things that come out of Nazareth.

Claim your purpose where God has placed you!

Be faithful there in the messy and the mundane.

In so doing, you are bringing delight to God…and there is no higher calling.

Even in Nazareth.

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.