Month: January 2018

I’ll Be Your Friend

I pulled up to the curb in front of Aaron’s day group yesterday, a little early to pick him up at the end of his day.  Soon Aaron walked outside, heading toward the van, followed by Barb.  Barb is like Aaron’s second mom.  She is also a manager at Paradigm.  Sometimes Aaron wants Barb to come out to talk to me so that she can tell me something fun about Aaron’s day.  However, fun was not part of our conversation on this day.  I realized this right away as I looked at the tears on Aaron’s face when he sat down beside me in the van. 

“Mom!” Aaron choked out through his tears.  “Natalie got mad at me and called me…….”  And on and on he talked, his voice thick with emotion and his hands rubbing together in frustration. 

Aaron loves to give his money to his friends, especially to Natalie, and it’s sometimes a real problem.  Aaron isn’t supposed to give away his money, and Natalie isn’t supposed to ask him for money, and when they are found out, it can be touchy.  Both Aaron and Natalie have trouble controlling their emotions when things get stressful, which certainly happened yesterday.  Words spill out…tears are shed…accusations made… 

If you close your eyes, and if the voices were far younger, you would think that once again we were on the school playground trying to settle a spat between two kindergartners.  But these are two adults, who because of their special needs happen to, at times….many times….still operate as little children. 

Aaron was being very dramatic, which showed me how much his giving heart was hurting.  He had done wrong and tried to deny it.  Natalie had done wrong and got very mad at Aaron.  Both were hurt and upset.  But Aaron…his heart wants to give everything he has to his friends and when it all messes up, he feels betrayed and lonely and adrift.

“I don’t have any friends,” Aaron sadly declared as his voice broke with emotion.  “And I don’t want to come back tomorrow!!”  Just then, standing behind Barb, came the voice of Koren.  She’s Aaron’s friend, and though at times she’s hard to understand, I clearly understood this.

“I’m your friend, Aaron,” she said.  “I’ll give you a hug.”

So Barb stepped aside and Koren gave Aaron a dear, kind hug along with a few pats on his back.  It was just the sweetest thing!!

Aaron and I sorted through the story with Barb before finally pulling away from the curb.  But soon Aaron said he had left his billfold with Barb, so I quickly turned around and drove back to Paradigm.  I went inside, and when I came back out, there was Aaron leaning inside the van that held Natalie.  I was concerned!  But as I stepped closer, I heard Natalie say, “I’m still your friend, Aaron!” 

Aaron backed out of the van, his face a picture of relief…and Natalie’s face alight with a smile. 

Later Aaron, as he so often does, asked me if he could give Natalie a card the next day.  After saying he didn’t want to go to Paradigm the next day, I knew that wanting to take a card was a good sign that he was softening about going.  So I found a card for Aaron and he carefully wrote Natalie a note…a short note with a huge message.

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We all need a friend, don’t we?  One thing that amazes me at Aaron’s day group is to walk in and see the interactions of these special adults.  They love being and having friends, just as much as you and I do.  Life is so very hard for them, harder than I can even begin to imagine.  Sometimes it would be easy to feel sorry for them, sorry to the point of tears. 

But then I see them welcome Aaron when he walks in the door.  I see their smiles, their hugs, their concern for each other expressed in various ways.  I see Aaron welcomed and loved, even after having a hard day previously. 

His friends there are a picture of love and acceptance.  I don’t see jealousy or judgment or bullying.  Maybe those things happen at times.  But there, among all the varying special needs and all the medical conditions…from wheelchairs or braces…with halting speech or deaf ears…curled hands and bent bodies…I see so often the joy and the love of friendship. 

That scene has touched my heart more than I can express.  I would love to share pictures, but privacy issues won’t allow it.  So you must take my word for it, and try to imagine it yourself. 

Sometimes the most needy ones are the ones who give to each of us a picture of what we need the most. 

Genuine, unconditional friendship. 

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It’s NOT a Small World

On a recent night, as Aaron and I watched a video and he ate his tortilla chips, I looked over to see that he had perched a bowl on the ottoman in front of him.  Without even asking, I knew what that bowl was for.  Aaron has multiple bowls for multiple uses, all over the house.  Later, after our video was finished and he had cleaned up his area, I looked inside his bowl that he had brought into the kitchen.  Can you see what’s inside the bowl?

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Very, very tiny crumbs are in the bottom of that bowl.  When Aaron is eating crumbly chips, he likes to have a bowl in which he tries to ensure that the crumbs fall.  It’s easy for me to want to fuss at him for taking a whole bowl for such a few crumbs, but I know that my fussing will not change his bowl habit.  He will find a bowl to use, even if he must hide it under his blanket so that I don’t nag him about it.  Yes, he has done that.  So I just let it go…let him keep his bowl for such a seemingly silly use…and thank the Lord for my dishwasher!

Those little crumbs are a perfect picture of an aspect of Aaron that can be both humorous and maddening.  And as always, it’s up to me to decide which it will be.

So often, persons with autism fixate on what to the rest of us would be such insignificant matters.  Like those small crumbs, we would tend to just brush such matters away without a second thought .  But not Aaron!  Not at ALL Aaron!

Take the word, “of.”  Yes, “of.”

Did you realize that there is a movie entitled, “Battle:  Los Angeles?”  And that there is another movie entitled, “Battle Of Los Angeles?”

Aaron watched these two movies a few weeks ago, so Gary and I became ever so aware…once again, because the same thing happened the LAST time he watched those movies…of the importance of the word, “of.”

“Mom!” Aaron would say as he bound into the kitchen.  “I’m watching Battle:  Los Angeles!  Not the one that has the “Of!”  And off he would go in some long tale of the latest alien doings in “Battle:  Los Angeles.”

Then later:  “Mom, did you know that in Battle Of Los Angeles…not the one I’m watching right now – the one that has the ‘of’…”  And another long story would follow.

And yet again:  “Mom, in Battle of Los Angeles…the ‘of’ one…”

It was of upmost importance that he…and we…and anyone else listening…be clear on whether he was talking about the ‘of’ one or the non-‘of’ one.

Are we clear?!

Such a small matter, but huge to Aaron.

Dinner plates done right are also of utmost importance to Aaron.  A few evenings ago, at supper, Aaron had a barbecued rib on his plate.  He ate the rib, then tolerated us putting some cucumbers and ranch dip on that plate.  He ate the cucumbers and dip, then stood up and opened the cabinet door, and took out another plate.  We had asked him if he wanted another rib, and he said he did, but he didn’t say another word about what we knew was bothering him.  He would NOT put his second rib where cucumbers and dip had been, so a new plate was in order.  With his rib on a clean plate, he was happy.

Meals can be interesting with multiple plates, bowls of various sizes, two or more forks, a spoon and a knife no matter what we’re eating, and always more than one napkin.  May as well not fight it!

Life for Aaron is crammed full of these little crumbs.  Like the old children’s story of the Princess and the Pea, where the princess felt that little pea under all those mattresses, Aaron does feel the weight of all these matters that to us are very small and silly.

Therein lies the problem, though.  They are not small and silly to Aaron.  If we don’t understand that, then we will feel the weight of Aaron’s anger and frustration.  He can’t necessarily verbalize what he is feeling, or even understand it himself, but the issues are huge to him and not to be swept under a rug, so to speak.

Aaron’s life has a certain order to it, and he needs those around him to be on the same page with him.  However, most of us are not only on a different page, we’re in a whole different book!  So we’re always having to be aware of what matters most to Aaron, and when, and why, and how…if at all possible.  Notice I said that we must be aware of what matters…not even understand it…but at least to be aware.  And to place the importance on it that Aaron does.

So there may be more bowls to wash, or plates or silverware.  There may be more undue emphasis on minor little words like ‘of.’  More questions to answer, explanations to wade through, and endless stories and comparisons to endure.

But each little crumb collected in that bowl is a part of the puzzle that is Aaron.  Each sigh that escapes our lips…each roll of our eyes behind his back…each scratch of our head…is just part of the process of piecing together all that is Aaron.

Along with all that, though, is plenty of laughter and lots of smiles…and a view of our world that is anything but small.

 

My Father’s Grip

I grew up in the little town of Princeton, West Virginia.  My Dad worked for the railroad there; first the Virginian, and then Norfolk and Western.  The railroads were a central part of life there in those West Virginia mountains.  It was coal country, and trains were vital for the coal industry.

The sounds of those trains, heard at all hours of the day and night from our home not too awfully far from where Dad worked, were an ever-present part of my childhood.  Even now, the sound of a train will take me back to those early days. 

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Dad worked his way up the “ranks” and eventually became a train dispatcher.  I don’t know how long it was before he one day told us of his promotion to Chief Train Dispatcher.  I didn’t understand much about his job, but I was always proud that he was a CHIEF Train Dispatcher.  He had a very responsible job, working long hours and often on weekends, or getting calls at all hours of the night to go in if there was a dreaded derailment. 

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Sometimes Dad would let one of us kids go to work with him on a Saturday, especially if he was only working a half day.  I just loved those Saturdays when it was my turn to go to work with him!  I remember entering the old wooden train depot building, where we would walk up a long set of wooden stairs to his second-floor office.  This old building smelled of wood; tobacco in various forms; pencil erasers; and trains, of course.

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There were crisp sounds of radio static as the men talked to the engineers on the trains; telephones ringing; the staccato ping of old typewriters; and the roar of huge trains when they would pass below us. 

Dad at railroad, early days

Dad would give me some paper and a pencil, and I would pretend to be working just as he was.  I loved watching the lights come and go on the huge control panel behind his desk, showing the progress of various trains that were running all over southern West Virginia. And always, sooner or later, Dad would take me down the hall to the Coke machine and the snack machine.  He would buy me a Coke and a pack of Nabs, and I was in heaven!

What made the biggest impression on me, though, was when Dad would go down those long stairs and outside to the train track, taking me with him.  Sometimes he would attach a paper message to a pole there beside the track, and then we would wait.  Soon I would hear it…the unmistakable sound of a train in the distance, coming ever closer to us. 

The clickity-clack of the wheels, and the train whistle blowing, blowing, blowing in the distance, told me that soon the train would be bellowing past us…right in front of where we were standing!  And suddenly, there it was!  Huge and black and so very loud and terrifying, too. 

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Yet I wasn’t afraid, even though I was so close to such power and danger.  You know why?  Because my dad held my little hand in his big hand.  He held gently yet firmly.  I trusted him totally.  I knew that where we were standing was safe, and though the train was very loud and scary, my dad knew just where we needed to be to stay safe and secure. 

Soon a splash of red passed by.  The caboose!  The conductor stood outside the caboose.  He grabbed the paper message off the pole, waved at us while we waved back, and the train disappeared up the tracks.  All was well.

In the Bible we read about the man named Joshua, whom God told to lead His people of Israel across the Jordan River into the promised land.  It was a daunting, scary proposition.  But as God gave His orders to Joshua, this is what He said: “Just as I have been with Moses, I will be with you.  I will never fail you or forsake you.”  (Joshua 1:5) 

Guess what the words “fail” and “forsake” mean?  They mean “to relax the grip.”  And that’s not all.  In verse 7, God told Joshua to be strong, which means to “reach out and grab hold.”

Do you see the beautiful picture that God is giving us?  This God of Joshua is our God today, for those of us who know Him!  And He’s telling us to reach out and grab hold of Him as He extends His hand to us.  Then let Him do the holding, because He promises not to relax His grip on us!

There are some very scary times for all of us in this life.  Sometimes some big, dark, loud problems happen to us.  God wants us to be strong, like Joshua…reach out to Him and let Him hold our hand beside all the issues that scare us and hurt us and threaten us on so many levels. 

I didn’t understand much about trains at that young age, but I knew they were dangerous.  Yet even more than that, I knew from experience that my Dad was wise and loving and would take good care of me.  He knew just how close for us to stand, and with my hand in his, I knew I was totally safe.

Our Heavenly Father has never said we won’t have problems.  In fact, He has told us that we WILL face hard times…times that will hopefully draw us to Him and to His strong hands.  He won’t let go of us.  He won’t abandon us.  He will keep us safe in our very hard times, even when we don’t like those times or understand their purpose. 

And we can say, with total confidence, “The Lord is for me, I will not fear.”  (Psalm 118:6)  

   

 

 

My Round Guy in An Oblong World

A few weeks ago, Aaron was eating some of his favorite Skittles when he came upon an idea, one that he loves.

“Mom?” he asked.  “Can I take some of my Skittles to Paradigm to share with Shauna and Stephanie?”

Aaron loves to share things, and we love that he loves to share…within reason.  For instance, I had to say no when he wanted to share some of my jewelry a long time ago.  We have said no to him when he tried to sneak out of the house with some of his DVD’s or CD’s that he wanted to share.  But Skittles?  Sure!

So Aaron promptly went to the kitchen and grabbed two sandwich bags.  Later, I found this.

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I had to laugh.  Really?  Just three little Skittles per bag?  But for some reason, Aaron thought that three was plenty and so I let it go, hoping that Shauna and Stephanie enjoyed every little bite of their whopping three Skittles.

Days later, I bought Aaron some Good and Plenty candy for his weekend treat.  He began eating them as we watched a show that night.  I noticed, though, that he was laying aside some his candies while he ate others.  I asked him about it.

“These,” he said, pointing to the ones outside the bowl, “are not like the rest.  They’re different.”

Sure enough, the ones he put aside were different.  They were round instead of oblong.  To Aaron, round Good and Plenty candies do not belong in the same bowl as the normal, oblong Good and Plenty’s. 

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I later also found three more misfit, round candies that Aaron had placed on the shelf under the table. 

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Isn’t that interesting?  To Aaron, he just couldn’t tolerate mixing the round with the oblong.  I guarantee that if I had tried to sneak the round candies back into the bowl with the oblongs, then Aaron would have once again removed them. 

Aaron has so much to share with the world, like his Skittles that he wanted to share with his friends.  He can be bright and colorful, interesting and very funny. 

He is also quite unique, not fitting in with much of the rest of us in ways that we all notice.  Yet he IS still one of us.  He’s just a different shape, so to speak, but that doesn’t make him less than us or worse than us in any way.  Definitely not!

I share Aaron with others through this blog in order for people to understand how amazing our special ones are.  Aaron was created by God to be exactly who he is.  It’s up to me…to all of us…to understand and appreciate him.  Oh, he can be so difficult to understand sometimes.  And at times…tired times…embarrassing times…challenging times…I really falter in my appreciation of Aaron.  I’m human. 

But may I never set him aside in the sense of isolating him or shaming him.  And woe to the person who does, for this Mama Bear will roar. 

Yet Aaron sets himself apart in ways that he totally doesn’t realize.  It’s part of his charm…and part of the reason that on occasion my nerves are shot!

He can make such a spectacle of himself in public and not be one bit embarrassed.  I have many Wal-Mart stories that prove this point.  A recent one:  I’ve been working with Aaron about looking in both directions before crossing traffic.  He looks at his feet, which is not good!  I’m always telling him to look around, but still he looks at his feet.  So the other day at Wal-Mart, as we walked out of the store and were nearing the crosswalk, I saw Aaron once again looking at his feet.  “Aaron!” I sharply said.  “Look UP!”  And good old Aaron stopped abruptly in the middle of the crosswalk, with stopped cars on both sides, and looked up…at the SKY!!  I just shook my head, told Aaron to look for CARS, and didn’t dare look at the drivers to see what looks they were giving US!!  I wonder if they looked up to see what was in the sky that was so interesting?!

At a convenience store this week, Aaron ordered a pretzel on the computer in the café as I’ve taught him to do.  But Aaron still isn’t sure that the girl behind the counter actually receives his order because he hasn’t said anything to her.  After he placed his order, he leaned around the counter to the clueless attendant and loudly said, as he rubbed his hands together, “I ordered my order!!”

Some people get Aaron and some people just don’t.  She just didn’t, so she looked at him with impatience, which I saw.  But Aaron didn’t see that at all.  He thought she simply didn’t hear him, so he repeated it again…loudly, again.  “I ordered my order!!” 

“He’s just telling you he put in his order,” I explained to her as I led Aaron away from the counter and toward the chocolate milk he wanted.  I thought it was funny…and sad…and I was a little angry at the girl’s impatience.  But I know that to some, Aaron is an odd shape, so to speak.  Hard to figure out.  Off-putting, even.

I have to say, though, that he makes me laugh when he does things like that.  He’s so one-of-a-kind…so himself…so uninhibited.  Oh yeah, have I been humiliated and red-faced and angered and surprised!

But I’ve also been blessed and taught so much and humbled and thankful.  And those moments…those lessons…I must remember and focus on and treasure.

Like this one:

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See what I mean?  He’s most certainly my round guy in an oblong world!  

 

From Bliss to Brokenness

On Monday, November 6, of last year…..yes, 2017 is – as of today – LAST year!!  Anyway, on that day last year our washing machine loudly died.  I mean, the noises coming from the bathroom/laundry room were downright scary.  I remember that date because two days later, November 8, was Aaron’s birthday.  Gary and I met at Lowe’s after he got off work on Tuesday night, where we found our dream machine, got it ordered, and were told that delivery would be on Thursday.

Thursday was the day we were having two of Aaron’s favorite friends over for a birthday supper, so I knew I would be home most of the day as I got things ready.  It was also the day that Aaron woke up in a very wet bed, so it became the day of a huge mound of wet bedding piled near our dead washing machine, waiting on our brand new dream machine.  And friends coming for dinner. 

So I prayed as I made apple pie….Aaron’s birthday “cake” of choice.  I asked God to please let the dream machine come sooner than the possible delivery time given to us, which was between 12:00 and 4:00, and usually means it might be there by 6:00 – with friends coming for supper and with Aaron very picky about his bedding and covers being JUST right.  It was shortly after 11:00 when I asked God for this kindness…not really near the expected delivery time.  But don’t you know, that within two minutes my phone rang and it was the delivery guys asking if it would be ok to come early!

I almost said, “Amen!!  You come right on over!”  I didn’t because I wanted my dream machine delivered and was afraid I would scare them away, but I did share with them God’s sweet provision and answer to prayer as they installed my dream machine.  One man smiled as he worked and the other said, “God is still on His throne!”  I did say “Amen!” to that!

I’ve loved that new washing machine.  The tub is so large that I have to stand on my tiptoes to reach the bottom of it, but does it ever hold big loads, like bedding!  And often I think back to that sweet answer to prayer on my very busy day….how God provided the dream machine in the first place, and then gave it to me early when I asked.  I love those “simple” and kind answers to prayer.

So fast forward to December 22, the Friday before Christmas, when Aaron woke up in an even wetter bed than the one of the month before.  Seizure?  I didn’t hear one.  More likely just too much drinking water before bed.  Regardless, everything needed washing on the VERY busy day of cleaning and cooking before the kids came in and our Christmas began.  Oh well, nothing to do but DO what needed doing…and I had my wonderful new dream machine, remember?

I was thankful for that extra large tub as I loaded Aaron’s wonderful waterproof mattress pad and sheets into it, and then went about my other work for the day.  But when I went back to check on that first load, I found it to be dripping wet.  “Oh dear,” I thought.  “What could be causing that?”  I had washed heavy loads before with no problem.  I set the load on a rinse and spin cycle, but still had the same dismal results when I checked it later.  Setting it again, I watched closely and found that water wasn’t entering the tub, and the tub wasn’t spinning.  Nothing in the manual helped and nothing I did worked, so I was stuck with all of Aaron’s bedding in another huge pile, and very wet bedding in my dream machine. 

Gary worked and worked on that machine when he came home, to no avail.  I did manage to get the very wet items dried in our dryer, but still had piles of laundry at the end of the day.  Gary called Lowe’s and a repairman was scheduled, but not until Wednesday…which this year was our Christmas Eve. 

Bless his heart, Gary insisted on taking all the laundry to the laundromat on Saturday morning.  Aaron helped him carry the bags out to his truck, and before too long Gary was back with lots of wet laundry to be dried. 

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And when the repairman came on Wednesday, he found the problem but told us he wouldn’t be able to come back with the needed part until January 2nd. 

So we have lots and lots of laundry sorted and piled on now empty beds since all the kids have come and gone after Christmas.  Of course, that means extra bedding and extra towels waiting to be washed in my dream machine that has turned into a little of a nightmare, honestly. 

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I went from happily sharing this evident answer to prayer to scratching my head at the failure of it.  Not the failure of God, mind you, but the failure surrounding this provision…my dream machine!

But through this really simple annoyance, God has spoken to my heart.  How many times He has clearly answered my prayers, only to also lead me to…at times…a hard place where I must trust Him.  It’s so easy to praise Him for clear answers, but sometimes difficult to trust His sovereignty when the answers aren’t a bed of roses. 

Today’s answers to prayers don’t guarantee a carefree tomorrow. 

But always…ALWAYS…God DOES answer.  His answer may contain trials, but He also ALWAYS has a reason for those trials.

Gary and I were married over five years before Aaron was born.  I wondered if I would ever have a baby.  That positive pregnancy test was one of the happiest days of my life!  We thanked God over and over!!

So fast forward to now, 33 years later.  When I held baby Aaron, I never dreamed of seizures and autism and behaviors and our son still with us at his age.  And like my broken dream machine, our dreams for Aaron have certainly taken a different turn.  Aaron isn’t broken.  He is just the way that God designed him to be.  But my dreams were broken.  Our amazing answer to prayer has also carried with it a huge element of grief and testing.

Yet I know…I KNOW…that God is in control.  With His blessing of Aaron in our lives has also come some brokenness.   Our life is on a far different path than we had ever envisioned.  But on that path has also come tremendous cause for trust in God…which teaches us patience…waiting…and then peace.  God’s sweet peace amid the piles of pain and mess that sometimes surround our days.    

I shouldn’t be focusing on the ANSWER to my prayers, but on the God behind that answer. 

And in that focus…in God alone…I can rest and I can trust. 

“God is our refuge and strength, a very present help in trouble.  Be still, and know that I am God.”  (Psalm 46:1,10)

What better way to start the New Year than this!