Category: Family

A Little Understanding, Please

I shouldn’t have let Aaron go to his day group on Monday.  His mood was pretty foul at home, but he wanted to go and so I let him.  He only wanted to go because he knows that having a special meal on Friday night depends on him going to Paradigm every day.  Funny how these rewards can come back to bite me.  He was pleasant on the drive across town.  But the way he slammed the van door when he got out was a sign to me that it might be a rough day.  And it was.

I knew when I got the phone call from Paradigm that afternoon, and Barb said a quick hello before putting her phone on speaker.  That’s usually what she does when she wants Aaron to also talk, and wants him to hear me.  Aaron was yelling, very upset and belligerent.  It had been a no good, very bad day…..and was soon to get even worse.  At this point, Aaron didn’t want to ride home with his driver.  Last August, we hired an agency to bring Aaron home from Paradigm in the afternoons.  Aaron likes going from point A to point B, with no stops in between.  But the route includes other clients that go home before him, so this had become a trigger for Aaron.  On his no good, very bad day….Monday….he did NOT want to ride anywhere but home. 

Once Aaron is upset…really upset….he’s like a volcano that must erupt until the flow of anger is over.  His autism prevents him from calming easily.  It prevents him from listening to reason or being reasonable.  He has very few filters, so words fly when he erupts, and some are inappropriate.  He decided on Monday to go ahead and ride home with the driver, knowing that he really had no other choice.  But he promptly told her to shut up when he got in the car, and he refused to put on his seat belt.  The whole way.  Not good….not good at all.

Shortly after he got home, upset still but calming some, my phone rang.  It was the agency that provides his rides home, telling me that they were very sorry but that Aaron would no longer be allowed to ride with them.  I understood, but I tried to do some explaining and then I asked for a second chance….but two days later was told there was no second chance.  Good luck with finding a new driver….it’s been nice working with you…. 

Back to Monday.  After the phone call, Aaron looked stricken.  He decided to try to rectify things by offering to help cut the ends off the asparagus I was fixing for supper.  I let him.  And during supper, out of the blue, he asked if he could write a get well note to our friend, Atha.  She’s been very sick and is in a rehab center.  I got him a note card and he wrote her his succinct get well wishes.  They were words of gold to me that night.  I think they will be for Atha as well.

Later, though, as Gary and I tried to absorb the events of Aaron’s day – especially the loss of his ride home, which is huge – things went downhill fast.  Aaron ended up realizing that we were trying to bring up the recurring subject of him moving out one day….living in a residential setting. 

“You could live with some friends, Aaron!” we said.

“I DON’T WANT TO LIVE WITH FRIENDS!!” he yelled.

And he stormed up the stairs as he told us how much he hated us.

But within seconds he was stomping back down the stairs, sitting in the recliner and rocking furiously.

“You just want me to leave!” he said, with tears coming down his face.

We tried to explain….tried once again to reason with him.  It doesn’t work.

“Aaron, Rosa lives with her friends and comes home on weekends.  And Shauna, and Natalie….”we told him.

“I DON’T CARE ABOUT ROSA OR SHAUNA OR NATALIE!!” he again yelled…..and again stormed up the stairs.

This went on for a long time, until finally he….and we….were spent and there was nothing else to say.

Tuesday was a better day at his day group, for the most part.  I drove to Paradigm in the afternoon to pick him up, fighting my frustration.  It didn’t help me at all to see and hear Aaron being rude to another client.  I was distant and silent as we started the drive home, finally responding some to Aaron but being rather cold.  That wasn’t a good choice for me to make.

“Mom!” Aaron said.  “You’re ‘iknorin’ me!”

The volcano erupted once again when we got home.  Aaron kept saying over and over that I had ‘iknored’ him.  He was crying hard, and my heart was breaking.  I tried to explain, but to no avail.  He pulled a large picture off his wall, taking some paint and dry wall with it.  He ripped a dollar bill into pieces.  He very loudly slammed his door several times.  And he told me that he was going to put a sticky note on his door that said, “Mom is an idiot!!” 

I sat on his bed.  He had his headphones on as he looked at a video.  I told him again that I was sorry, and I asked him to forgive me.  All he could do was cry and say, “You were ‘iknorin’ me!!”

So I said the words that always reach his heart.

“Aaron?  Would you like to go get a Slushie from Sonic?”

Without even a pause he quickly said yes, and so we got in the van and got his slushie.  I parked in the Dillon’s parking lot, away from others, and he slurped while I talked.  He calmed and I tried to explain things, knowing full well that Aaron doesn’t relate to most of our explaining sessions.  Finally I was done.  There was quietness before Aaron spoke again.

“Mom?  There’s a reason why you shouldn’t watch Alien Vs. Predator 2.”

He didn’t notice my deep sigh or the shaking of my head.

Oh, if only Aaron could convey to us his hurt and his anger with reasoning words instead of hard and hurtful words!  Or curse words.  Or just totally ignoring the situation and talking about aliens. 

Aaron often doesn’t even know why he’s frustrated.  He just is on some days.  As he escalates, so do others around him, and that only further compounds the issues.  I reacted with ‘iknorin’ him on some of the drive home, which I really shouldn’t have done, so he reacted.  Did he ever!  But he was afraid that I didn’t love him anymore.  He’s terrified of losing my love, but he can’t verbalize that.  So he reacts with anything that comes to his mind that demonstrates his deep fear and hurt.  That usually means that he breaks something, like his watch or his glasses or his picture on the wall or the dollar bill.

Why am I telling you all of this ugliness?

I’m sitting here listening to Aaron’s monitor….listening for another seizure which may come.  He had a long seizure at 5:30 this morning, and only one seizure means that usually more will follow during the day.  He’s napping in his room and I’m on alert as I go about my day. 

I tell you the ugliness of his behaviors because really, those behaviors hold him down more in life than do his seizures.  It’s a raw, hard reality for many parents of special needs children.  Those sudden, awful, interrupting, exhausting behaviors.

I can explain seizures.  Other parents can explain various visible special needs of their children, or even special needs not seen but understood.    But behaviors?  So frustrating….so embarrassing…..so condemning for both child and parent.

But we need those behaviors to be understood as well.  And we as parents need to always work to understand them, too, especially in the heat of the moment. 

I have friends who would say to others, “Please, please understand my loud and uncooperative and bizarre and hateful child.  Please just try to understand, and not judge and not condemn and try to give advice or lectures.  Just understand, a little even.  Sometimes that’s all we can manage, too.  A little.”

And love a lot.

Tuesday night, as Gary was going to bed, he said, “Hey Aaron.  Come here.” 

I thought that Gary had something cool to show Aaron, so I looked around the corner of the kitchen to see what it was.

And as Aaron walked toward his dad, Gary held his arm out and gave Aaron a hug.  Aaron even responded!

I blinked back the tears.  Sometimes it’s hard to love Aaron, honestly, but we must….and we do.  I was very thankful for that sweet picture that ended our second no good, very bad day with Aaron.

One more thing.  I went inside Paradigm yesterday when I went to pick up Aaron.  What a lifter-upper that was!!  Those wonderful clients, with so many needs, have so much love to give….even on or after the bad days.  Love for me and more importantly, love for Aaron.  We could hardly leave for all the hugs and talking and smiling. 

Every day is a new day, as Barb says.  A fresh new start.

“This is the day which the Lord has made.  I will rejoice and be glad in it!” 

But sometimes I AM glad when they’re over.  J 

Playing Skip-Bo at the end of one of those rough days

The WORST Two Weeks!

Listening to all the stories of the huge winter storm back east brings back some memories of a couple interesting winter storms that our family experienced several years ago.  We endured two vicious storms, back to back, but in different states and in different ways…..neither of which any of us care to experience again.

It was December of 2004.  We had made a change of plans for our Christmas.  Dad had just been diagnosed with liver cancer the month before, so we decided to make a trip home to Princeton, West Virginia for the holiday.  We should have known it was going to be a strange trip because of what happened the evening before we left.

It was late in the afternoon and Gary was in our driveway, getting the topper put on our van.  Suddenly a dilapidated old car zoomed into our driveway and screeched to a halt.  Immediately there were probably 6 police and sheriff cars that surrounded our driveway and the front of our house.  The officers jumped out and were all over that old car in nothing flat.  Gary eased back into the garage and came in the house.  We all watched from the windows as two or three people were taken from the car, frisked, handcuffed…..the whole nine yards, just like on television.  Except this was in OUR driveway! 

In the meantime, our neighbors all around were wondering what on earth was going on over at the Moore’s house.  Several tried to walk up and question the officers, but were bluntly told to leave and go home!  This made them even more curious and worried, of course.  We were in the house still wondering what was going on outside.  We were also fielding phone calls from neighbors as well as struggling to keep Aaron in the house.  He wanted nothing more than to barge outside and find out exactly what all the excitement was about.  We wanted nothing more than for him to settle down and to NOT go outside, where who knows what might have happened.

Finally, a police officer came to our door to tell us a little about what was going on.  Apparently, for several days the police had been casing this guy’s mobile home about a mile up the road from us.  He was a suspect in some sort of drug business.  On that day, when he left his home, he soon realized that he was being followed.  He turned into our neighborhood in an effort to lose the police.  But our circle has no outlet, and when he realized that he was trapped, he pulled into our driveway and gave up.  We had to wait for the culprits to be taken away and for the car to be impounded before we could once again work on getting the van packed and ready.  It made for a long evening.  And Aaron was very disappointed that he never got to go outside and personally be a part of all that huge excitement!

We climbed in the van very early that next morning in the bitter cold.  Facing a 16 hour trip – at least – was not much fun for any of us.  Our teenaged kids especially didn’t enjoy the very long drive.  Little did any of us know what was ahead.

First of all, the van wouldn’t start.  Could anything else go wrong, we thought?  Like I said, little did we know.  Gary and Andrew jumped the battery, and off we headed, praying that the van held up on our long trip.

Things went well for quite a few hours, but as we got closer to Kentucky we started noticing that cars headed in the other direction had snow on them.  The more time that went by, and the more vehicles that went by in the other lanes of the interstate, confirmed to us that we were headed into snow.  And soon it was not only snowing, but there was ice and there were strong winds.  We were in the thick of it in Kentucky when we eventually came to a complete stop on I-24.  As far as we could see in front of us, and as far as we could see behind us, there was nothing but huge trucks and many cars.  No one was moving, not even an inch. 

Eventually, people started getting out to walk around….to talk to other drivers and families….to see if anyone knew what was going on.  But as the weather worsened, most people just stayed inside their vehicles and hunkered down.  We waited, and waited, and waited…..for 10 hours!  Gary would turn the van on for short periods in order to warm us up some.  Thankfully, we had food and water and blankets.  The guys were able to go outside to use the bathroom, but Andrea and I kindly declined their offer to hold up blankets to hide us….in the snow…and the ice…on the sloping bank outside the van.  We joked about all that, and during that long night when all we heard was the pinging of snow and ice on the van, we would hear Aaron’s deep chuckle in the back seat, from under a blanket.  He thought the bathroom business was pretty funny.  And of all things, he handled the whole miserable experience very well.  We were amazed at that!  And thankful!

Traffic finally started moving again, very slowly at first.  There were cars and trucks off the interstate all over the place, stuck in the snow and ice.  It was a terrible mess.  Gary got off at the first exit he could find. We were so thankful to see a gas station and convenience store.  So were many other ladies who probably waited like Andrea and I did.  We were all hurrying as fast as the snow and ice would allow us to get inside and stand in the bathroom line. 

Our normally 16 hour trip to West Virginia took us around 30 hours!  We still had a sweet time with family before soon heading back to Kansas.  We had only been home in Wichita for several days when word of another winter storm came on the news.  This storm was set to hit Wichita with some ice, but no one had any idea just how all the elements would come together to create a monster ice storm.  Ice fell from the early afternoon of January 4 to the afternoon of the next day.  You could stand on our porch and hear the sharp crack of branches falling from the trees, and the clink of limbs hitting each other in the wind. 

We lost our power that first evening.  Of course, it didn’t take long for us to be very cold.  Andrew sat up in bed that next morning and realizing that we still didn’t have power, and that ice was still falling, he declared, “This has been the WORST two weeks of my life!!” 

We laughed, but we certainly understood how he felt.  We had all about had it with awful winter weather!  Our power was off for five days.  Thankfully, we had hot water.  We cooked on our kerosene camp stove, we had lanterns, and life wasn’t all that bad.  We played games and read books, and actually enjoyed some great family time together.  Some friends had come over to hook us up to a generator on that fifth night.  Just when they were finishing, our power came back on.  I actually felt bad for all the work they had done only for us not to need the generator.  But oh, when those lights came on and the heat started up, we were very happy indoor campers indeed!

We really had lots to be thankful for in the midst of all the craziness of those two weeks.  We had a safe trip in the dangerous weather, time with family in West Virginia, safety in the ice storm, food to eat, warm clothes and lots of blankets, hot water, indoor bathrooms at home in the ice storm J,  Aaron did well, and so much more.

And oh yes, none of us got arrested!!  I won’t tell you how close we came a time or two. 

A Fight to the Finish

I’ve written in the past about how much it means to me when someone “gets” Aaron.  You know what I mean.  It’s when a person out somewhere in a public setting reacts to Aaron in a way that makes me know they totally understand him.  Or at least partially understand him.  I don’t know that even Gary and I on some days totally “get” Aaron.  This past Friday night was an example of both. 

Aaron and I went to Subway to get our special Friday supper, as per Aaron’s request.  One of the girls who began with our order was very nice, but I could tell that she was nervous with Aaron.  She was unsure of what to say to him, and very unsure of what he was saying to her as he robustly placed his order. 

“Can I have a sub?” he bellowed, with me standing close by patting his arm in an effort to soften his tone. 

“And can I have extra cheese?” he continued bellowing.  “My Mom says I can’t have extra cheese!” he rambled on as she was just saying that he COULD have extra cheese, and so she glanced nervously at me. 

I told her to go ahead with the cheese, which caused Aaron to bend over and rub his hands together as he laughed in delight…..which caused her to attempt an uncertain smile as she placed the extra cheese on the meat, all under Aaron’s watchful eye.  I wanted to tell her that it was OK….that Aaron was loud but harmless…..but I didn’t do that with Aaron standing right there.  I just hoped my smile would convey to her what I was thinking.

Just then, the manager appeared and began helping with our order.  I remembered her and she remembered Aaron.  This girl’s mother worked with special needs and so she grew up around other Aarons.  Therefore, she was very relaxed and affirming toward Aaron. 

“What you need, Buddy?” she asked Aaron as she waited for him to complete his order.  Nothing he said or did from that point on phased her in the least.  I think the other server was as happy for her to take over as I was.  Aaron was just very happy to finish his requests, figure out the mayonnaise issue, and watch as his sandwich was wrapped and labeled. 

Yes, we deal with watching others try to understand our Aaron nearly every day.  I wanted to hug the two who were on duty at Papa Murphy’s a couple weeks earlier.  They completely engaged Aaron on his level as they made our pizzas.  Aaron stood there in total happiness as he loudly talked to them about aliens and spaceships and rubbed his hands together like crazy as they responded to him as if he was talking to them about school or sports. 

Then there was the young man behind the counter at the theater yesterday, his eyes big with uncertainty as Gary and I both exited the restrooms at the same time.  Aaron was talking to him about the Star Wars movie, I think it was, that we had just seen.  All I could focus on was the “Would you please rescue me?” look on the boy’s face as he tried to figure out what to do with Aaron.  Aaron loves a captive audience, and that boy was just that.  He looked it, too, as Aaron talked loudly – of course!- and rubbed his hands together and laughed.  We tried to quiet Aaron and lead him away but Aaron had more to say.  As we finally left, I laughed and I thanked the shocked young man.  I really wanted to walk back to him and say, “You have just encountered the amazing world of autism!”  But I knew that Aaron would follow me and pick up his story where he had left off, so I left well enough alone as we walked to the van, Aaron talking all the way…..of course.

All of these are mostly “Ha-Ha” funny moments.  They may be embarrassing to us at times, or frustrating, but they are not usually awful.  Those more disturbing moments happen at his day group and occasionally at home.  That was also the case on Friday night.  We went from hugs when Aaron came home from his day group to the joy of ordering and eating subs to the downward spiral of Aaron’s cascading emotions.

It all started with me realizing that Aaron wasn’t telling me the truth about his rough day at Paradigm.  I made an off handed comment that hurt Aaron’s feelings, so after we watched Wheel of Fortune he turned to me and had “that” look on his face and in his eyes.  I knew then that he had started down that track of frustration.  Time proved that evening that Aaron wasn’t going to be easily derailed.  His emotions were in a turmoil, as were ours.  Yet if we escalated, it would only serve to further escalate Aaron, which is the last thing that needed to happen.  He escalates very well on his own, thank you.  Gary and I tried to exercise firmness with calmness.  Just when we hoped that Aaron had calmed, though, we would soon hear his heavy steps coming downstairs to engage us once again in the battle that was going on in his head.  He was almost manic in his laughter and in his efforts to unsettle us.  It truly is amazing to see, but not amazing in a funny way.

It’s the other side of Aaron that we don’t see that often at home anymore.  It’s him in a fight to express himself and voice his hurt over his own actions, or over ours.  But he simply cannot tell us with calm and rational words what it is that is bothering him.  Therefore, he chooses something that he knows will either alarm or frustrate us, and he will go off on it over and over again.  Just when we think that our words of great wisdom have reached into Aaron’s head, he starts all over again on that same issue and our heads just bow down in defeat. 

I sat in Aaron’s bedroom with him late that night.  He sat on his bed, legs dangling, trying to express himself and his emotions but clearly unable to do so in the way you and I would.  But he was winding down, I could tell.  I just needed to wait patiently, listen closely, and pray silently.  I literally bowed my head in prayer as Aaron talked.  I knew he saw me but he never asked what I was doing.  He may have thought Mom was falling asleep.  After all, it was after 11:30….way past both our bedtimes! 

At last he said he was going to bed.  I watched as he pulled back his covers and then began arranging his snake, skunk, and frog in perfect order.  I wanted to rush over and yank the covers up over Mr. Snake as Aaron worked and worked and worked to turn his lower skinny stuffed body just the right way.  But I knew that one wrong move could open up Aaron’s emotions again, so I just stood and wearily watched.  Finally all was well with the stuffed animals and the pulled up covers. 

I asked Aaron if he was reading before he went to sleep.

“No,” he said with no emotion.  “It’s 11:47.”

I was relieved.

“Mom?” he asked.  “’Guess what?”

And I knew he had nothing to say.  He does this when he wants us to stay with him.  He asks, “Guess what?” and then tries hard to think of something to say.

“What?” I answered.

“I’m wearing my watch lower,” he said as he pulled his shirt sleeve up. 

Maybe it was a few centimeters lower, but it sure was hard to see the difference.

“Mom?”  he asked again.  “Guess what?”

“What?” I repeated

“When Independence Day Resurgence comes out, do you think the theaters will be crowded?”

Sigh.

“I don’t know, Aaron.  We’ll just wait and see,” I replied.

“Mom!  Look at this!”

And at 11:49 I was looking at the back of the original Independence Day movie box and talking about the plasma ray coming down from the spaceship.

Oh dear.  Would this night ever end?

But if finally did, only after Aaron went up and down the steps several times to tell Gary about plasma rays and new Independence Day movie news and to say good night once again. 

Earlier during the evening, when Aaron was working through his anger, he began feeling badly about his actions.  He came to me in the kitchen and had something in his hand he wanted me to take.  I held out my hand, and Aaron gave me some of his Mike and Ikes.  They were sticky and I’m sure covered in multiple germs, but he stood there waiting for me to eat them.  So I did, praying silently for God to please strengthen my immune system at that moment. 

“I wanted to give you these Mike and Ikes since I’m sorry,” he explained as he waited for me to enjoy them.  So what could I do but eat them? 

And what can we do but try our best to do what we hope others will do with Aaron.  We appreciate the understanding that strangers show to Aaron.  Can we do less?  Understanding what makes him tick, what makes him upset, what it is he is really trying to say when he is so upset……this is all part of figuring him out. 

It’s “getting Aaron.”  Not condoning behaviors, which we don’t, but understanding the behaviors as much as a parent of a child with asthma understands an asthma attack.  I thought of all this when I was sitting in Aaron’s room with him, watching him come to the end of the fight, and realizing how vital it is that I understand.

It means as much to Aaron for us to understand as it does to us for others to understand.  Complicated.  But so very necessary. 

Aaron?  Guess what? 

We’ll keep trying to understand. 

And I should keep a box of Mike and Ikes stashed somewhere for good measure.

Contented New Year!

I decided last night to sit by our Christmas tree and do a little reading by the soft glow of the lights and a table lamp nearby.  The tree will be down soon, although I’m resisting that notion.  The rush before Christmas and the craziness during Christmas doesn’t afford many opportunities to just sit quietly by the tree, relishing its beauty and enjoying its warmth.  Now the seasonal rush is over and I’m not wanting to part with my tree.  But I must.  It’s a new year…..a new season…..and normal life returns. 

The book I was reading is authored by Richard Swenson, MD.  The title is Contentment: The Secret to a Lasting Calm.  This title makes me smile as I think of our life with Aaron, which is rarely calm.  God has much to teach me and I wonder if I will ever learn.  I recently read Ann Voskamp’s book, One Thousand Gifts, which stresses the importance of gratefulness.  Swenson’s book is similar, but develops the issue of being content despite our surroundings.  Here is a quote I read last night:

“The best kind of contentment, the truest kind, is a state of feeling unencumbered.  It is a state of absence of fear or anxiety about what we own or don’t own.  It is about freedom from comparison, regardless of what our neighbor has.  It is about lack of pretense, so devastating to authenticity and so tedious to maintain.  And the best kind of contentment, the very best, is divorced from circumstances.”

My circumstances so often dictate my mood, and there in the bullseye of my life…..my circumstances…..stands Aaron.  We love Aaron.  We have chosen to keep Aaron at home at this season of his life.  Yet living with Aaron is like riding a roller coaster as we experience the highs and lows of his health and behavior issues.  This holiday of Christmas highlights all of Aaron’s needs and emotions like no other.  He’s excited, happy, overwhelmed, stressed, and frustrated….just like the rest of us.  But he certainly doesn’t contain or handle those emotions, most of the time, in ways that are acceptable.

Aaron is like our gifts under the tree, all different shapes and sizes and wrapped in various colors and designs of paper.  We have the giving side of Aaron that makes us proud, but can also cause some trouble.  The Friday before Christmas, Aaron and I went back to see his six friends at their residential home.  We took pizza again, and also took them some Christmas gifts.  Aaron was so happy to do this, as he loves to give.  He helped me put the gifts in bags the night before, turning up his nose in disgust at the yucky lip gloss and body wash.  We laughed and had a great time, as we also did when we visited the girls and gave them their gifts. 

Aaron also gives money away at his day group, which is not allowed.  It’s a nice gesture from Aaron, but it isn’t what he is supposed to do.  It gets out of hand.  I sometimes let him take some gum that he can give away, or cookies, but giving others his money is something that Aaron has always wanted to do, even as a little boy.  We dealt with that issue cropping up again over Christmas as well. 

We have Aaron’s health issues to always monitor as we listen for seizures during the night or when he naps.  Thankfully, he didn’t have any seizures that we know of during Christmas.  But he broke out in some ugly bumps, so on the Monday before Christmas I took him to the doctor.  Gary was off that day, and we were going to take Andrea and her boyfriend Kyle to lunch and a movie.  We were looking forward to that so much, but instead I found myself seeing to Aaron’s needs once again.  And once again I had a choice to make concerning that persistent issue of contentment, despite my circumstances.  Sure enough, Aaron had a staph infection and so I was glad I had taken him in, but still disappointed about our change of plans. 

Aaron’s behaviors come in assorted shapes and sizes, and can change quickly.  Life is pretty stable with Aaron at home on a normal day, but when he goes to his day group he becomes loud and full of behaviors.  The same is true at home over Christmas, with all the change in his routine and the house full of people.  Aaron has to share his time with others and his structured world is turned upside down.  All the talking and laughing and extra noise is often overwhelming to him.

Andrea’s boyfriend, Kyle, was here for the whole week.  We were concerned about how Aaron would react to him.  But Kyle was a natural with Aaron, treating him as an equal and being totally comfortable around him.  What a relief!  Kyle certainly passed the Aaron test!  Even when Aaron became unkind, Kyle didn’t show any reaction and he understood.  Aaron insisted on playing Christmas Bingo with us, which he usually detests, and also even played the Hershey’s Kiss game…..trying to open the kisses while wearing bulky silicone gloves.

Aaron can’t stand the silliness of games and parties, so playing these games was a stretch for him.  Aaron targeted Kyle during the first Bingo game he played with us, being rude to Kyle as he blamed him for his own discomfort and frustration.  The next time Aaron played with us, the following night, he did much better.  And during Skip-Bo, while there was the noise of Star Wars being watched by Andrea and Kyle in the background, Aaron became very bothered by the lack of his usual quietness as we played. 

“I wish Kyle would leave this house!” Aaron said, over and over. 

“But Aaron,” I replied.  “You like Kyle and you’ve had fun with him.  Let’s talk about what’s really wrong.  You just don’t like all the extra noise and things being so different right now.  Right?”

“I wish Kyle would leave this house!” came Aaron’s response. 

Sigh.

Aaron also had similar comments toward friends of ours that spent the night with us this week.  He went from making them laugh the night before to being disrespectful the next morning.  I understand the reasons because I understand how Aaron thinks, but it’s still very embarrassing.  Thankfully, Dawn has a special needs daughter who also gets overwhelmed, but still…..

There go my circumstances again!  And the choices I must make, and often fail at doing so correctly.

Up and down!

And there were many good moments…..special times with Aaron as he enjoyed the week of Christmas.  He LOVES Andrea’s dogs, and they generally tolerate him pretty well.  Christmas morning was especially sweet with Aaron and Darcy.

And Aaron makes us laugh with many of his comments, of course, and his actions.

So here we are, with memories of Christmas still fresh and with a new year just beginning.  I need to find Aaron a new autism doctor…..need to think about all those day group behaviors and why he acts that way there……monitor his sodium levels…..deal with the seizures and the meds that help, but also cause some of his behaviors…..and much, much more.

And to work on my own contentment, like the Apostle Paul said, in whatever state I am….to be content.  In a state of sadness, or a state of frustration, or fear, or embarrassment, or turmoil, laughter and joy…..

Swenson says, “Contentment is our glad submission wrapped in God’s providence.  The doctrine of providence explains that God has a plan, and that it is a perfect plan.  Since He is all-powerful, it is impossible for us to thwart the plan.  We either accept it or we kick against it, but regardless, the plan goes forward.”

Yep.  Just like Aaron goes forward, and we experience the highs and lows, the ups and downs….often hanging on for dear life. 

Instead of Happy New Year, I wish for myself a Contented New Year, despite whether I am feeling happy or not.

And so I wish that for each of you as well.

Contented New Year, everyone! 

  

The Nail Trim

I remember climbing on my Daddy’s lap when I was a little girl.  He was sitting in his chair near the fireplace, with his shelves of books on one side and his end table on the other.  His newspaper was on the end table where he could eventually read it at the end of a busy, tiring day on the railroad.  His Bible was also laying there within easy reach.  He read his Bible often as he sat in his chair. He was always ready and willing to listen to my questions about what the Bible said about this and that, especially as I got older.

 
But when I was little and would climb on his lap, I remember the gentleness that he showed.  In the early years he smelled of pipe tobacco and smoke…..that subtle odor that comforted me.  I can still see him emptying his pipe of the old tobacco and then refilling it with fresh, tapping it gently and pressing the tobacco down just right.  I can hear the sound of the pipe stem on his teeth and see the soft, swirling smoke around his head at the end of the day as he relaxed.

Dad was never too tired to listen to us kids as we talked to him.  He was patient and kind, and so wise.  Sometimes when I would climb up on his lap, he would read me a book.  Sometimes we would just snuggle.  And at other times, he would take my hands and check my nails.  If they were too long, he would ever so carefully trim each nail.  I sat very still, watching him take each of my fingers and cut the nail just right.  Then off I would hop and go on my way, not giving much thought to that simple deed that Dad performed. 

Until years later…..many years later.  The tables had turned, as they so often do, and I and my family had become the caregivers.  Dad was in his last month of life as the cancer he had fought for eight years was winning the battle.  I had been able to go home to help Jan and John as they cared for him and Mom.  It was a month of many cherished memories that fill my heart every day, especially during this Christmas season.  It was December when Dad died.  It was December and Christmas that he and Mom loved so much.

One day I rolled Dad in his wheelchair into the living room so that he could enjoy the pretty Christmas tree.  I helped him get onto the couch, his thin body so frail and weak.  Then I sat beside him and snuggled close to his bony side.  Words were few because it took too much energy for him to lift his head and talk.  But he still smiled….that gentle, kind smile that was his signature. 

As we sat there in the soft glow of the Christmas lights, I looked down at his fragile hands resting on his lap.  Hands that had worked hard, disciplined well, warmly hugged, and folded in prayer.  And I saw that his nails were so long.  How had we let them get in that shape?  So I looked in his tired face and I asked him if he would like me to trim his nails.  He slowly lifted his bowed head and gave me that smile as he said yes ever so softly. 

I got some clippers and a nail file, and I set to work on his nails.  I was afraid of hurting him so I worked very carefully, taking each finger and slowly trimming and filing.  He was very still and quiet as I worked.  Finally I was done.  He looked down at his hands and smiled again, and then slowly looked me in the eyes as he thanked me.  For days afterward, he talked about how good it felt to have his nails trimmed as he thanked me over and over. 

And just as when I was a little girl, the significance of that act didn’t hit me until later.  Dad showed me such love in the simple deed of trimming my nails when I was young.  Now it was my turn to show him the same love in the simple deed of doing the same for him in his weakened state.  His strength was mine when I needed him.  My strength was his when he, many years later, needed me.

And it was the love and guidance of Dad’s hands that led me to be there for him at the end of his life.  He raised me and my brother and sisters well.  He loved us deeply, worked hard for us, and led us to know and love the Lord. 

 
It seems like yesterday that I hopped off of his lap after he trimmed my nails, and ended up beside him on his couch trimming his nails beside the Christmas tree.  Now his and Mom’s memorial ornaments hang on my tree, and all I have are memories.  
 
But someday I’ll take his hand again in heaven, and Mom’s as well, and see them both strong and whole once more. 

 

Can I Resign?

I had some nice quiet time as I sat on the couch beside our newly decorated Christmas tree this morning.  I love the early morning quietness, the soft shiny lights on the tree, and my cups of coffee.  Time to think, to remember, and to pray.

Then I heard Aaron getting out of bed.

So the mood changes.  Now it’s time to think of how to deal with whatever mood he has; to remember to be understanding and patient; and to pray for that understanding and patience when I feel it slipping away.

Aaron was sick yesterday with a stomach virus.  He threw up multiple times, but by last night was doing well enough to keep down some applesauce; watch part of the latest movie in which he is totally engrossed; and play a game of Skip-Bo…..beating me, by the way, which made him feel even better.

As he came down the stairs and into the kitchen this morning, I asked him how he was feeling.

“Fine,” he flatly answered.  “Can I have my three cups of coffee now?”

He always includes the number of cups when he asks for his coffee, just in case Mom has forgotten the all-important fact that he always has and always will drink THREE cups of coffee in the morning. 

I then asked him if he wanted to sit for a few minutes by the Christmas tree with me…..and would he also want to drink a cup of coffee as we sat sweetly enjoying the tree.  He informed me, rather reluctantly, that he would sit by the tree but that he did NOT want a cup of coffee to drink there. 

“I want my three cups of coffee in my room,” he informed his ignorant Mom.  Doesn’t she know that coffee, THREE cups of coffee, is only to be gulped down in his room? 

We sat down on the couch, me with my cup of coffee and Aaron with his subtle exasperation that Mom would even suggest that he also have a cup of coffee by the tree.  He was quiet for a minute but of course it wasn’t long before he began with his usual, “Mom?”

I waited.  He says this so often, but he doesn’t really have a plan of what is to follow the familiar, “Mom?”  I waited some more.  “Mom?  Uh……”  So now he was trying to decide what to say, because all this business of sitting sweetly…..and quietly……by the Christmas tree is pretty strange. 

I would love to have heard Aaron say, “Mom?  Do you know why I act so hatefully sometimes at Paradigm?”  Having such a heart to heart with Aaron would have been the best gift ever for me! 

But instead, it was “Mom?  Have you seen pictures of Transformers Revenge of the Fallen on the internet?”  He didn’t even notice my resignation or how I tried to muster a little enthusiasm in order to act even remotely interested in Transformers Revenge of the Fallen.  I told him that I didn’t know if I had seen pictures of Transformers Revenge of the Fallen on the internet, because all of these games and these movies and these pictures just jumble together into one blob of sameness for me.  I didn’t tell him that part about a blob of sameness, though, for fear that he would want to talk about The Blob movie that he and I watched a few weeks ago.  That’s not what I wanted to remember on this morning beside the pretty Christmas tree.

Aaron then got up and went up the stairs, monkey style like he does, and soon returned with his Transformers Revenge of the Fallen guide book.  He knew just where to open it in order to show me Demolisher…..the bad guy, I found out after asking because that’s something else I can never remember…..and Bumble Bee and Optimus Prime…..both good guys…..who came in and saved the day.  Aaron was happy to be talking to Mom about these important matters.  He would not have been happy to talk to Mom about such unimportant matters as his behaviors and motives for such. 

 
Aaron has had some rough days at Paradigm in the last few weeks.  Not every day, but many days he exhibits anger and aggression there.  It’s like he becomes The Incredible Hulk when he walks in the door.  Gary and I try to get to the bottom of it, but to no avail.  He doesn’t act like that at home.  He has issues at home, certainly, but not to the extent seen at his day group.  It’s discouraging and embarrassing and very frustrating to Gary and me.  If only Aaron would talk about it on a heart level, but even Aaron doesn’t really know why he reacts the way he does.  These autism behaviors are like that.  Unexplainable…..spontaneous……disruptive……sometimes hurtful.

This past Monday, Aaron was in a mood when he woke up.  It was because of the bad day he had at Paradigm on the day before Thanksgiving.  That dark cloud was still hanging over his head.  We worked through his issues on Monday and he decided to go to Paradigm.  On the way there, he was very happy to stop with me at Wal-Mart.  I hoped that Aaron would let me pick something up there for him to eat for lunch at Paradigm, but for some reason Aaron usually refuses to take food to Paradigm.  When he told me that he was eating sandwiches offered to him by others, I became so frustrated.  I tried to reason with him, but he wouldn’t budge.  Finally, with a degree of humor, I told him that I wanted to just resign from my Mom position.  I was tired, so just give me the letter of resignation and let me sign it!

Aaron turned and looked at me, and then started laughing…..thankfully.  It was one of those moments when I wished I hadn’t said those words, even in jest, so I was thankful that he saw the humor. 

“You can’t resign from being my mom,” he slowly said.  “You’ll always be my mom.”

“Yes, Aaron, I’ll always be your mom,” I replied.  But some days…..

So last night, after he had been sick all day, I watched him getting his snake and frog and skunk positioned just right in his bed.  I watched him get his covers the way he wants them.  I watched him write down his time to bed in his bedtime log book.  I kept my distance.  No hugging because of germs, I told him.  He just stood and looked at me, then turned to get in bed with no usual goodnight hug. 

“Mom?  Are you gonna take care of me if I did throw up during the night?” he asked. 

There went the tug on my heart as I assured him that I would take care of him.

“So, like, if I throw up you’ll wash my face?” he hopefully asked.

Yes, dear Aaron.  I’ll wash your face.  I’ll look at pictures of Transformers Revenge of the Fallen.  I’ll see that you have THREE cups of coffee in your room.  I’ll see you through the rough days. 

And I’ll tear up those resignation papers.  Because I do love you, no matter what.  And I’ll always be Mom.

 

A Thankful Moment

 

I was winding down a long day of cooking on Tuesday night when Aaron came bounding into the kitchen.  “Mom!” he said.  “Will you print off some cheat codes for me on your computer?”

 

Now the last thing I wanted to do at that point was go down to my computer and start looking up cheat codes with Aaron.  So I pretty well told him that.  But Aaron doesn’t take no for an answer very easily when he’s so set on something as important as cheat codes for his Star Wars Legos game.  I know that about Aaron, and therefore I was soon in my computer chair with Aaron hovering over my shoulder.  He instructed me on what to type in order to arrive at the correct site.  We printed a page but it wasn’t right, so we printed again and thought it was right…..but soon I could see that look on Aaron’s face that told me this looking up cheat codes job wasn’t finished yet.

 

I was really too tired for this.  I had reached that point of bone tired frustration.  I just leaned over then as Aaron typed in the correct information himself.  Sure enough, there on the screen popped up the precise cheat codes that he needed.  It was just two pages.  I clicked the print icon while Aaron gleefully rubbed his hands together.  He held the two pages with as much delight as if he was holding the title to a new car.  I stapled them together and we were done.  Thankfully done!

 

“Thanks, Mom!”  Aaron said.  He thumped with his usual loudness up the stairs to the kitchen, while I more or less dragged myself behind him.  There was the counter full of pot and pans and other sundry dishes that wouldn’t fit into the dish washer, waiting on me to dig in and get them washed.

 

“Mom!” Aaron turned and said.  “Since you helped me, I’ll help you.  I’ll dry the dishes!”  This unsolicited offer to help was a surprise to me.  He was so sweet about it and so sincere that I wouldn’t dare say no…..even though the temptation was there.  His drying skills are sometimes lacking, while his talking skills never are.  I knew he would be halfway drying and all the way talking.  My bone tiredness wasn’t looking forward to that scene.  But the look on his face and the willingness he showed kept me from refusing his offer.

 

I told him that of course he could dry the dishes, but he noticed the time then.  Shower time!  So he hurried off to take his shower with the promise that he would return to dry dishes.  And sure enough, he did just that.  After his shower, he stood beside me with the drying towel and dried each dish to some degree.  And he placed them in a stack on top of the stove or on the counter, laughing at how they might fall over and talking all the while about whatever came into his head.

 

I realized that I wasn’t thinking about how tired I was.  I was enjoying this time with Aaron as he did his part to help.  Then I thought about Pastor Bob’s sermon on Sunday…..how the ten lepers were healed by Jesus, but only one returned to give his thanks to the One Who had healed him so miraculously.

 

It would have been expected for Aaron to hurriedly take his shower and then get right back on his Star Wars game, using his brand new cheat codes, without a thought in the world for dirty dishes that needed to be washed and dried.  But he didn’t.  He knew that I was tired and he knew that he could help.  Plus, it was his way of saying thank you to me for printing the cheat codes.

 

In a sense, Aaron was the one leper who returned to give thanks.  Aaron, who usually only thinks of Aaron, thought of me at that moment.  And he saw a way to say thank you…..a tangible way to express his appreciation to me.  How could I say no to that?  I’m so thankful I didn’t!

 

It was another unexpected blessing from Aaron….a side of Aaron not always seen.  We shared some thankfulness that night during this season of being thankful.  It was good for Aaron, and it was especially good for me.

 

May I remember to not only BE thankful in every situation, but to allow Aaron the opportunity to also express his thankfulness in the ways that he can.

 

Happy THANKSgiving, everyone!

 

From God’s Heart to My Lips

Was it just last weekend that I flew home from a wonderful vacation week in Alabama?  It seems much longer than a week.  There are reasons for that.  But first, I did enjoy a great time of relaxing with my dear friend Glenda in her beautiful home.  Bruce and Glenda are friends of ours from way back.  Gary and I met them at Gary’s first assignment following his graduation from flight school in 1983.  We did lots of life together in Colorado Springs while stationed at Fort Carson, and then later as we both lived in Germany.  It had been 23 years since we last saw each other.  Bruce and Glenda very kindly flew me to Alabama for several days of rest and relaxation.  We took up right where we left off, too, not missing a beat.  Glenda and I talked a blue streak last week, and I think we pretty well caught up on everything.  It was really a refreshing time for me.

In the airports and on the planes, I finally finished reading Ann Voskamp’s book, One Thousand Gifts.  What a challenging book this has been for me!  Challenging me to be thankful….grateful…..in all situations.  Our friends, Kurt and Jill Grier, gave me this book while Aaron was in the hospital last June.  What a perfect setting for this insightful book to be given! 

So flying home last Saturday, I finally finished this book.  At the very end, Ann wrote this:  “Every breath’s a battle between grudgery and gratitude and we must keep thanks on the lips so we can sip from the holy grail of joy.”  There is a reason that God let me read that line on that day…..the day I was flying home…..to life at our house.

I heard him before I saw him.  I was near the escalator in our beautiful new Eisenhower Airport here in Wichita.  Home at last.  I was focused on that down escalator when I heard, “MOM!!!” 

I looked over to my left, and there was Aaron.  He had just bounded off of the comfy chair where he was sitting near Gary as they waited for me to round the corner.  How appropriate that the very first word I heard when I reached home was that word that Aaron says the most.  Mom!

His smile was huge as he came toward me, rubbing his hands together in great delight.  Delight to see me?  Yes, in his own way.  But more delight, I believe, in the fact that he could finally tell me in person what he was anxiously waiting to say.  “MOM!!!  I finished watching…..”  And he was off, words tumbling over each other as he told me about the latest movie he had just completed.  Aliens and battles and robots and laser vision…..all of it, coming out in a loud rush. 

He had no interest in my trip home.  He only cared that I WAS home.  He did give me a hug as I reached out to him, but he didn’t stop talking.  Gary and I hugged and kissed to our typical background music of Aaron’s constant talking.  We’ve learned to jump in quickly between his words in order to say our own to each other. 

There is no slow re-entry into life with Aaron.  He blows in with no interruptions allowed, words and hands flying, expecting us to show great interest.  And we opened the door at our house to our large dog, to Aaron following and talking, to trick-or-treaters, to the time change, and to me coming down with a stomach bug that evening.  Interesting.  What was that quote I had just read?

It gets better.  And let me again quote dear Alice Zwemke:  “I’m not complaining.  I’m just reporting.”  This week….

On Monday I took Aaron to the dentist for a cleaning.  A small cavity was found.  On Tuesday, I took him back to the dentist for a filling.  He was a little sullen and quiet (thankful for the quiet part!) on Monday, but on Tuesday he was full of smiles and talk.  He even carried in his Happy Spider from Hawaii that Glenda had sent him, and kept Happy Spider on his lap while he got his tooth repaired. 

 
By that evening, Aaron still had a crooked smile from his tooth procedure.  The dentist said not to worry, and sure enough by that night he had returned to normal.  So on Wednesday he was able to finally return to Paradigm, his day group, even though he complained of not feeling well.  That afternoon he had a big seizure there, so I went to pick him up, carrying clean clothes since he was incontinent during this seizure.  He had another seizure shortly after going to bed that night. 

On Thursday, he woke up with my stomach virus that I was kind enough to share.  Between bathroom visits, he slept nearly all day.  No Paradigm.

Yesterday, Friday, he still wasn’t feeling great so he stayed home again.  No Paradigm.  By the evening he was more himself, so I foolishly let him enjoy his pizza night.  I felt sorry for him because we had planned to have a pizza party at one of Paradigm’s residential homes with several of his friends on Friday, and we had to cancel it.  It was an early birthday celebration for him.  So pizza it was, at home……which he later threw up as he sat in his chair in the family room.  Poor Aaron.

And I now have a chest cold.

So here we are.  Life at its best, right?  That quote again….we must keep thanks on the lips.  I’ve been practicing that attitude this week as best I can, failing at times but also so aware of the power of gratitude that is so dear to God’s heart.  From God’s heart to my lips.

I’m thankful for our washing machine and our dryer; for bleach; for hot water; for Aaron’s excellent waterproof mattress pad; for Gary’s hard work in providing for us so that I don’t have to work; for our gorgeous fall colors to enjoy as I look out the windows or drive around town; for our large kitchen trash can last night during the throwing up episode; for not being in the hospital like some I know and love; for all of this happening while I am home and not out of town; for God’s forgiveness when I fail; for the love of friends and family…..and for so much more.

For Aaron, who just rolls with the flow….which is a pretty yucky saying right now, actually.  Sorry.  Anyway, he handles things better than most.  He’s more concerned with his routine than with his disappointments.  I’m carrying the disappointments.  He carries the changes to his routine.

“Mom, I’m going to bed now,” he said on Wednesday night.  “I’m not going to bed at 10:00.”  It was 8:23 when he laid down and I turned off his light.  But soon I saw the light from under his bedroom door.  I asked if he was ok.  He told me that he was fine…..that he was just writing down what time he went to bed in his log book.  Well, of course.

Aaron showers at 8:00 or a little later every night. He showered in the late afternoon on Thursday.  “Mom?” he asked.  “Because I just showered, does that mean I have to shower by 8:00 tonight?” 

Wheel of Fortune is still being turned on at 6:28, not 6:27, though….so that’s a good thing.  And Mom must be reminded to wait on the coffee maker to perk more coffee in order to fill that third cup before carrying them up to Aaron’s room.  One doesn’t take TWO cups of coffee to Aaron’s room.  It must be THREE cups, for crying out loud. 

Sometimes Aaron weighs us down on many levels.  But I’m thankful for the blessings that are many, the smiles that are frequent, and the laughter that comes unexpectedly. 

“Mom!!” he said the other morning as he stared down into his empty coffee cup.  “Why is there coffee bean powder in my cup?”

See what I mean?

 

 

Shake and Toss

I remember when Aaron was just a little guy and we were stationed in Germany.  Boxes of gifts from family would arrive before Christmas, full of presents for all of us.  It was so exciting to place the bright packages under our little tree and see the happiness on the kid’s faces as they especially noticed each gift that had their name attached.  On Christmas morning, we would open our gifts and watch with the delight that all parents experience as our children could hardly contain their excitement.  It was a time of pure joy!

But Aaron quickly learned something about his gifts.  Some of his presents contained clothing.  Others contained toys.  Toys tend to rattle.  Clothes don’t rattle.  So smart little Aaron would pick up a gift and give it a shake.  If all was quiet inside the box, he would then toss it over his shoulder and move on to the next one.  It really was hilarious.  We caught him in the act on the video that we were making.  Shake and toss.  Shake and open.  Shake and toss.  And Aunt Sandra, after seeing the video that we mailed to her, declared that she would never send another gift of clothes to Aaron ever again! 

We laughed and laughed over that.  “But wait,” I said.  “Clothes are wonderful!  Maybe not to Aaron, but to us they’re great!!”  Gary and I knew the value of  clothing for our children when we lived under a tight budget.  Aaron could care less, but he just didn’t understand their importance. 

Life’s gifts come in all shapes and sizes.  Some we know right away are amazing and will be treasured forever.  Others are uncertain.  And then there are those gifts that we want to shake and toss away.  Gifts of hardship and pain……gifts that aren’t fun…..that definitely weren’t on our want list. 

I recently received a wonderful gift from some old friends of ours.  We came to know Bruce and Glenda at our first military duty station in Fort Carson, Colorado.  Then we were also stationed near each other in Germany.  Our kids played together when they were very young.  Bruce and Glenda live in Alabama now, and are flying me there to spend a few days.  I haven’t seen Glenda in years, though we’ve stayed in touch.  It’s a gift that I didn’t need to shake!  I knew right away what a precious gift it was.  I leave today, in fact, and am so looking forward to this getaway with a dear friend. 

Another gift of mine, in his own amazing way, is our Aaron.  Of course, he’s our son and I love him with all my heart.  His special ways of living life due to his seizures and autism, however, make him a very unique gift.  Trust me, there are plenty of days that I wonder about this large gift of Aaron.  There are many times that I want to shake and toss.  I want to shake and toss Aaron!!  But those moments are always balanced by the spurts of joy and laughter that he brings into our lives.  He’s the whole package, that’s for sure!

For instance, last Friday we were listening to a CD on our way to his day group.  He likes it when a song totally ends before he gets out of the van at Paradigm.  As we pulled up to the curb on Friday, the song seemed never ending.  I had errands to run and then an appointment at 1:00, so I finally told Aaron that I really had to go.  I told him that he could finish the song the next time we played this CD.  Aaron didn’t like that idea at all, but he finally agreed.  However, to register his disapproval, he gave me a resounding hit on my arm before he left the van.  It hurt!  And it made me very angry.  Yet off he strode as if nothing at all was wrong.

I drove away in frustration.  See what I mean?  Aaron can go from happy to hurtful in a flash.  It was a time I really would have shaken and tossed that gift.  Yet I know better.  I know that God gave us Aaron and that he is indeed a beautiful gift, not to be shaken and tossed, but to be opened and enjoyed.  It sure takes a lot of patience sometimes, though!  More than I often have on my own, for sure. 

Yet that evening, Aaron bounded in the house with a little wrapped butterscotch candy in his hand.  His driver, Paulette, had given Aaron a wrapped candy and then gave him one for me.  Aaron was so excited to give me this little candy, and wanted me to eat it right away.  It was close to supper and I told him I would wait.  Aaron made sure, for the rest of the evening, that I didn’t forget his gift to me.  He talked and talked about that candy. 

“It’s one of those sucking things,” he described.  And he ran up to my desk that night to retrieve the piece of candy and bring it to me, hovering nearby until I finally ate it. 

Aaron can go from hitting to hugging in no time.  From grouchy to giving.  His gifts are all over the place, but each one I must receive and enjoy.  Well, not always enjoy but at least try to understand and appreciate.

He stood in front of me one evening like this.

 

“Take a picture and send it to Andrea!” he said.  So I did just that as we both laughed at his silliness. 

He just came downstairs this morning.  One of the first things out of his mouth?  “Mom? What do you think of Megatron and Optimus Prime versing each other?”

And we’re off and running, as always.

I’m still unwrapping all the layers of this Aaron gift that we’ve been given.  And remembering the verse that I read this morning.

“For from Him and through Him and to Him are all things.  To Him be glory forever.  Amen!”  (Romans 11:36)

No shaking and tossing allowed.

 

Getting Aaron

I ran into Great Clips this morning, taking Aaron for another haircut, shave, and beard trim, and who greeted us but Erin!  Erin has worked there for quite awhile.  Erin loves Aaron, if you follow me.  She’s a mom, and just a very sweet person who genuinely loves seeing our Aaron.  So it’s always nice when Erin cuts Aaron’s hair! 

Erin is one of these people who just gets Aaron.  She was genuinely happy to see Aaron as we walked through the door.  She talks to him while she cuts his hair, asking him questions and interacting so well with him.  I just love having people like that in Aaron’s life.

 
I can tell very quickly if someone gets Aaron or not.  You don’t have to totally understand Aaron to get him.  Is this making sense?  There are just some people who from the first moment they encounter Aaron, are relaxed and accepting of him.  And there are others who look at Aaron like he has an alien head or something…..although Aaron would think that having an alien head is pretty cool. 

For instance, Friday evening Aaron and I went to Little Caesar’s for pizza.  The line at the take-out window was long, so I decided that Aaron and I would go inside to grab our pizzas.  As I parked, I gave Aaron the usual directions…..wait for me, don’t barge in the door, if there’s a line then don’t push ahead, please don’t clap, and please talk SOFTLY!!  Of course, I was trailing behind him as I finished my instructions and he was barging in the door.  Oh well.

Thankfully, there was no line, so Aaron had free rein to walk up to the counter, lean way over and loudly say, “Can I have some breadsticks??!!”  I was tugging Aaron back while reminding him to talk softly and also reminding him that I already told him he could have breadsticks…..when I turned and saw the cashier’s face.  She was staring a hole through Aaron while she wore totally no expression on her face.  There was no emotion at all from her.  She looked at Aaron like he was perhaps an alien, but a very boring alien.  Like she was thinking, “Who are you and why are you in my store?”   

Aaron was very excited and happy, totally oblivious to this girl’s cold stare.  He continued to interrupt as he loudly asked if we could get TWO pizzas as well as breadsticks.  Her eyes went from me back to Aaron, with her impersonal cold stare once again.  At times like that, I’m very thankful that Aaron doesn’t get social cues.  This girl didn’t get Aaron, but Aaron didn’t get that she didn’t get him, so in that respect all was well. 

But all was not well in my spirit.  I wanted to give her nose a little pinch and then deliver a lecture, but of course I didn’t.  And I know that maybe she was having a bad day.  Yet really, deep down, I just know that some people get Aaron and some people don’t.

Tuesday for lunch, Aaron and I met his case manager at Applebee’s for his yearly PCSP meeting.  Barb, from Paradigm, was there as well.  Aaron is as comfortable with Barb as he is with me, so she understood Aaron’s whacks on her arm, his too tight squeeze of her hand, and how he helped himself to some of the chicken on her salad.  It was our server, though, whom I especially noticed.  She made eye contact with Aaron, smiled at him, listened to him, and was genuinely relaxed with him.  I even looked at Barb and whispered, “She gets Aaron.”  And Barb knew just what I meant. 

When someone understands Aaron, it’s as obvious as the nose on their face….like that little girl’s nose that I wanted to pinch.  J  But it’s very obvious to me when a person understands Aaron, and even accepts him just as he is.  Sometimes being in public with Aaron is embarrassing, honestly.  He’s large, and loud, and totally blind to the effect he has on others by being “out there” with some of his behaviors.  He might point at someone because of their hair or whatever.  He might turn around in the restaurant booth to see what the people behind him are eating or saying.  He might stop to stare at their plates as we walk out of the restaurant.  And if he goes to the bathroom by himself during our meal, it’s very interesting to watch people’s faces as he walks by, his head high and arms swinging, often making funny noises with his mouth.

So when someone gets Aaron, I find myself relaxing some.  It’s as if I don’t feel the need to explain, which I usually don’t do anyway.  I shouldn’t have to explain Aaron.  He is who he is, in all his boldness and uniqueness.  But I’m human and I feel my face getting red when Aaron does something a little crazy that draws attention to us.  It’s nice to see others understand him even if they don’t really understand…..to accept him…..and especially to enjoy him. 

Having Aaron in my life has taught me to try hard to show understanding to other families I see who are probably uncomfortable in public.  I remember when Gary and I ate dinner at a local restaurant with some friends.  Our table was near a mom and dad who were eating dinner with their special needs son.  I noticed their son immediately.  He was stimming in his unique way, and I just knew what they were feeling.  I could see it on their faces, especially the dad.  So I finally made eye contact with the mother, and I smiled at her.  I pointed to myself and shook my head yes.  She was a little confused, so I just stood up and walked over to their table.  I spoke to her and her husband, and told them who I was…..and that I had a son much like their wonderful son.  They both visibly softened and relaxed.  They were so happy that I understood and that I spoke to their adult son, and that I got it.  That’s what meant the most to them….the fact that I got their son. 

So when you’re out and about, and you see an Aaron…..or most likely, when you HEAR an Aaron…..just smile at the parents with genuine love.  Even when their Aaron might pull one of the lower boxes of cereal out of the huge cereal box display….and mom stands there with fallen cereal boxes all over the aisle….smile and maybe even offer to help pick them up.  Yes, that happened to me.  And the help of a sweet teenaged boy was such a blessing that day!

There are special people all around us who need us to get them.  There are families of special ones who will feel a huge weight lifted off their hearts if you are that person in their lives. 

I get it!  You can, too.