Category: Kindness

Vacationing With Aaron

A vacation trip means different things to different people.  Aaron was very happy when we told him that we were taking a Fourth of July trip to see family in North Carolina.  He likes seeing Aunt Sandra and others that he knows.  But really, to Aaron a vacation primarily means one thing…….food.  Particularly, restaurant food.  Snack food is right up there, too, on Aaron’s list of favorite vacation activities.  Then there’s Aunt Sandra’s wonderful cooking at her house, which is the best!  Staying in a hotel would be number three, because a hotel usually means dinner in a restaurant before bed.  Rest stops are fun, too, especially if the rest stop is a stop at a filling station……where there is food.  Plus I bring snack food, which is fun, but not as much fun as food that we buy on the road.  So you get the idea.  A vacation for Aaron boils down to one thing:  food in one form or another. 

We left for our Food Fest vacation on Thursday, the 30th.  Aaron wanted to know what time we were leaving, because knowing the precise time for everything in life is vital to Aaron.  So we told him that we would leave around 8:00, hoping that the word “around” would yield us some leeway in Aaron’s mind.  Not likely, but we can always hope that Aaron will be a bit flexible.  As it turned out, Aaron had a very rough night before our 8:00 leaving time.  I heard him having a seizure at 12:30 that morning, with two more strong seizures following during the early morning hours.  It was a long and very tiring night for him and for me, but I was thankful that by morning Aaron was able to get ready for our trip.  I was also thankful that flying had not been an option for us as it’s too expensive, because trying to maneuver Aaron in an airport and on a plane after seizures would have been very difficult. 

We were two hours late to leave, but Aaron was too lethargic to care.  He burrowed around in the back seat as soon as we started driving until he was finally comfortable, laying down and sleeping for quite a while.  He would wake up and look around some, long enough to ask the inevitable:

“Are we getting something to eat?”

“Yes, Aaron,” we would answer.  “We’ll be getting something to eat.”

“When?” he wanted to know.

“Oh, probably later in the afternoon,” we told him.

“So what time?” he asked.

“We’re not totally sure what time,” we answered.

“Oh,” was all he would say.  Until:

“I’m talking about eating in a restaurant,” he clarified.

“Yes,” we said.  “We’ll eat in a restaurant.”

“What time?” he ventured again.

And so back and forth this conversation occurred, over and over again as Gary drove us on our scenic route.  If Aaron was awake, we pointed out the farmer’s fields…..the Mississippi River……the Tennessee River…….the quaint little towns with their interesting sights……the beautiful wildflowers……

But none of it was particularly interesting to Aaron.  Part of it was that he didn’t feel up to par after his seizures.  And part of it is because none of these things held nearly as much interest to Aaron as, say, a Cracker Barrel or Applebee’s sign.  Of course!

Aaron was listening to some music on his headphones when he let us know that he needed to use the bathroom.  We told him that we would stop as soon as we found a place.

“I’m talking about a bathroom in a restaurant,” he informed us. 

HaHaHa!!!  Good try, Aaron.  We knew he must have been feeling better!

We ended that first day happily eating supper at Applebee’s, right beside our hotel in Paducah, Kentucky.  Aaron rolled in his suitcase while he carried his small backpack that held his music CD’s and his CD player with headphones.  And Aaron, who must finish what he has started if at all possible, was very pleased to put on his pajamas and then complete the task of finishing his Ronnie Milsap CD before it was time to turn off the lights and sleep.  Mission accomplished!

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We all slept very well that night.  Aaron was still fairly slow that morning, which is normal after seizures.  But he wasn’t so slow that he didn’t think about food!  He was hoping for breakfast in a restaurant, so we told him that the hotel breakfast was very much like a restaurant.  He didn’t really buy into that, but he was happy to eat again.  And very curious about the bowl of Trix that the woman in front of us had as he leaned over to stare at it, which caused her to stare at Aaron……with a smile, thankfully. 

Aaron really wanted Gary to listen to his Ronnie Milsap CD in the car player, but we told Aaron no, that he needed to use his own player.  Gary told Aaron that he just doesn’t like to listen to music while he drives, which Aaron finds totally mystifying. 

“How come you just like listening to the cars?!” Aaron asked in disbelief.

It was a welcome sight to see more and more mountains as we drove toward our beautiful Smoky Mountains, and to our family.  Aaron wasn’t greatly impressed with the pretty views of mountains and lakes and rolling whitewater rivers.  He just wanted to know what time we were getting to Aunt Sandra’s and what was for supper.

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Aaron quickly set up shop at Aunt Sandra’s, putting his CD and DVD player on the desk in the room where he sleeps.   His Ronnie Milsap CD and his Superman movies were nearby, and he was all set. 

On Saturday, Sandra took us up to see a friend who raises goats and dogs and cows.  The goats were just so cute.  Georgianna let Aaron pet and feed the goats, which he loved doing.  He really loves to feed animals……of course!  It’s food!  We ate lunch at Nabor’s drive-in, which we always must do in Bryson City……and which IS a restaurant, so Aaron was happy!  We drove around and looked at sights and gorgeous views, ending up at the grocery store……..where Aaron ended up finding DVD’s for sale, of course!!

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It was just great to see everyone over the next few days!  There were so many family members there, especially at the barbecue on Sunday.  During the days that we were there, Aaron had lots of new people to talk to about movies or about his day group or about anything else that entered his mind.  He didn’t know many names but he would usually just look at someone and say, “HEY!”  I would often tell Aaron the name of the person to whom he spoke, but names didn’t matter nearly as much to Aaron as the telling of his stories did.  So “HEY!!” it often was.

There were some moments of frustration, as there always are, but generally Aaron did very well.  To be in such a crowded environment with many people he didn’t know, totally out of his routine, is always a stretch for Aaron.  I think the time he got the most bothered, of all things, was the night that he heard Sandra and I making the noise that means something tastes good.  You know…….mmm, mmm, mmm, mmm, mmm.  The inflections in that common sound we make without even thinking just drove Aaron nuts.  He told us to stop it!  And we forgot as we stood at her kitchen island that night, sampling a few more little bites of her carrot cake.  “Mmm, mmm, mmm, mmm, mmm,” we both intoned as we smacked our lips……and there stood Aaron.  He had fire in his eyes as he got very upset, told us we were weird, and then gave me a kick in my leg.  It’s just amazing to see how his brain functions, and to see what makes him totally lose control. 

One of the sweetest moments came when Aaron began to tell his cousin, Andrew, about Ronnie Milsap.  Andrew, bless his heart, got out his phone and tried to look up Ronnie Milsap while Aaron anxiously waited.  Andrew’s phone didn’t get good coverage, so I quickly found the song.  Andrew listened intently with Aaron, while Aaron rubbed his hands together in delight and laughed a lot in total pleasure.  And to top it off, Andrew went up to Sandra’s house so that Aaron could show him some more Ronnie Milsap songs on his CD player.  What a kind thing for Andrew to do!! 

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We visited Aaron’s Nana, Leo, on Monday morning before leaving town.  We also got to see Jonni and JD, and of course, Meshach……who sat in Aaron’s lap the entire visit and even wanted to leave in the car with Aaron. 

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The trip back to Kansas on Monday and Tuesday was uneventful.  Of course, Aaron had the usual food questions and where are we staying questions and when will we get to Kansas questions.  On Tuesday he wanted to know what time we would get home.  Gary told him that we would get home around 4:00 that afternoon.  As we rode, we showed him when we entered Tennessee, when we entered Kentucky, etc. 

“Is 4:00 when we come to the entrance of Kansas?” he later asked. 

Later, we were on the final leg of our trip.  It was 3:09.

“When will we be home?” Aaron asked.

“In about an hour,” I told him.

“No.  You said 4:00,” he replied.

“What time is it?” Gary asked him.

“3:09,” Aaron answered.

“Then it’s about an hour,” Gary said.

“No,” Aaron answered.  “It’s 51 minutes.” 

I don’t think Aaron even notices the quick looks between Gary and me, and the suppressed smiles.  He is so often unaware of how he affects us in a very pleasing, happy, amazing way.  He does usually know when he affects us negatively, however, but I’m thankful that the happy times occur more often than the not-so-happy times.

He went to his day group today with no problem.  That’s a huge big deal for him after being gone for so many days!  He wanted me to come in with him and tell Barb about our trip, but I told him I didn’t have time for a long talk, and Barb probably didn’t either.

“But Mom, you don’t have to tell her for a LONG time!!” he insisted.

Yet I have told all of you for a LONG time about our vacation trip, that’s for sure.  Thanks for bearing with me if you’ve read all of this.  I just love sharing a little about what it’s like to travel with Aaron……to live with Aaron……to experience new things with Aaron……to be in his world and have him in ours in the way that we have this past week. 

It’s just another glimpse into autism and into life with Aaron, which makes our lives full and rich and sometimes rather complicated.

But not boring.  Never boring. 

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A Sometimes Wonderful World

Aaron was with me all day on Monday because he had a doctor appointment in the morning.  Afterwards, we swung by the eye doctor to have his glasses adjusted; went to Taco Bell for lunch, which was the real reason that Aaron was happy to be with me; and then to Wal-Mart, his second real reason for being happy.  I experienced quite a few autism moments, too many to remember them all……for after all, Aaron’s whole being is influenced by autism.  So is mine.

There was the ride in the van across town, and Aaron’s excitement about listening to the CD he had chosen.  Pop Memories of the 60’s was quickly inserted in the player, and then Aaron’s instruction as he held his hand up, palm facing outward:  “Don’t talk.  I want to listen to the music.” 

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The number 1 showed on the CD player, so Aaron reached down to quickly pick up the CD holder and announce in his monotone voice, “Stevie Wonder.”  He bent over again to place the CD holder back where it had been.  The song began and Aaron said, “Mom, do you like Stevie Wonder?”

Notice who’s doing all the talking.

So we listened to “My Cherie Amour” as memories of high school flooded by brain.  But I didn’t share that with Aaron because I wasn’t supposed to talk. 

Then number 2 came on the player, so Aaron bent back over to pick up the CD holder.  “Kenny Rogers and The First Edition,” he again announced.  And back down went the CD holder.

Number 3:  Pick up holder…….“Tom Jones,” Aaron flatly said…….replace holder. 

Number 4:  Pick up holder…….. “Mama Cass,” was announced……replace holder.

You get the idea.  All across town, and back across town, he never tired.  Oh, and there was this one.

Number 10:  Pick up holder……. “Lois Armstrong,” he said as sounds of “Hello, Dolly!” filled the van. 

“Ummmm, Aaron, that would be Louis.  Louis Armstrong.”

“Don’t talk, Mom!  I want to listen to the music,” said guess who?

This doctor visit was to the psychiatrist who oversees his autism care.  Oh, could I fill her ears full!  I refrained somewhat, but Aaron didn’t.  He stretched himself out on her small couch right away, uninvited to do so, legs hanging out over the end, and proceeded to talk about Mom’s upcoming trip to Houston……his upcoming trip to NC with Mom and Dad……his new Superman set of movies that we let him have for the NC trip……and Ultraman.  Among other things. 

Later, at the eye doctor, he was rather impatient as we waited.  Doctors and glasses adjustments are such a bother, especially with Taco Bell just around the corner!  Then in walked a nun, dressed in her full habit from head to toe.  I hoped that if I began tickling Aaron’s back, he would keep looking down and not see her.  Aaron is fascinated with nuns and with their unusual clothing, so I wasn’t sure what he would say.  Too bad we didn’t have a CD playing so maybe, just maybe, he would be quiet.  He did look up and he did see her, of course, standing right there at the front desk.  But as she walked into the bathroom, out of earshot, all he said was, “Mom, she’s wearing a hood!  She must work for the church.” 

I was pretty relieved when she was called back immediately.  I had no idea what to expect with both of them sitting in the waiting room together, and it wasn’t her I was worried about.

Aaron loved lunch, of course, even amid my reminders about not whistling as we waited for our food or making various other unusual noises.  And then before we ever stood up to leave came my reminder to him about stretching.  Aaron makes quite a production of stretching when we get up to leave a restaurant, his back arched and his stomach stuck out and his amazing stretching noise.  So I’ve learned to remind him before we even stand up that he is not supposed to stretch, which I did there in Taco Bell.  He stood up, though, and did a suppressed stretch……what you might call an abridged stretch……which on Aaron still looked amazing and drew attention, I’m sure.  I’ve learned not to look at the people sitting nearby.  He just looked a little like he was puffing up and about to implode, right there near the drink machine.  Nice.

And then he saw it……the quarter that someone had dropped on the floor directly in front of the register.  He has such hawk eyes for things on the ground, unless it’s his dirty clothes in his room or his mounds of books on the floor.  I tried to stop him but it was too late.  He bent over clumsily and picked up the quarter, while the line watched him and I just stood there.  It was quite a sight, Aaron doing the old man bend.  The employee told Aaron to keep the quarter, which he gleefully pocketed, oblivious to the scene he had just created. 

Dear Aaron!  He is so unaware of how funny and unusual he is, or of how he comes across.  These autism moments, I call them, come in many various forms.  And yesterday at his day group, they weren’t so funny.  The not so funny autism moments cause anxiety and frustration for many other reasons.  He wasn’t so happy to go to Paradigm yesterday, but he went.  He ended up in tears for part of the morning, and then in the afternoon he was almost manic in his fake laughter and his “teasing.”  He calls it teasing, even though we all remind him over and over that if he’s the only one laughing……and others are hurt or angry…….it’s not teasing.

Aaron thinks it’s funny to say things to people like, “You’re fat!  You’re dumb!  You’re old!”  Or many other things as well, most of which are not funny at all.  He truly can’t seem to permanently connect what is correct to say from what he impulsively wants…..and does…..sometimes say.  This is especially true when he is frustrated about something.  Instead of addressing the issue of his frustration, he will verbally harass others, and then often regret it later.  And he does it under the guise of “teasing.”

He has a special friend who is all bent over in a wheelchair.  He has shown so much kindness to her.  I wrote once about how he waited on her at the end of the line as they walked to Quik Trip so that he could walk with her.  He loves giving her things or helping her eat.  But yesterday on the way home from Paradigm he said, “Mom, I told S that she’s ugly.  I was just teasing!” 

I was so hurt for S and I was so disappointed in Aaron.  I told him that S is a young woman who would love to be able to get up from that wheelchair, go shopping for pretty clothes and make-up, and get her hair and nails done.  I told him that she would love to go to bed at night thinking about how Aaron had told her that her hair was pretty, or that she had a pretty smile.  Instead she would go to bed that night thinking of how Aaron had said she was ugly……and she probably feels ugly every day. 

Aaron listened.  He talked about it last night at supper with Gary.  I have to say that it was hard for me to say the words I said to Aaron.  Part of me wanted to just assure him that I was sure S knew he was teasing……that it was OK, but he should do better……or that we all understood what he really meant.  But I knew that I needed to let Aaron know of the hurt he had inflicted, while it also hurt me to say the hard words to Aaron without backing down. 

Aaron had a small seizure at 5:30 this morning, but it was enough for him to wake up later with a bad headache and with bleary eyes.  I let him stay home today.  Later in the morning, he went with me to run a few errands.  On the drive back home, out of the blue, Aaron remembered.

“Mom?” he asked.  “Can we stop at Dillon’s so that I can get S a sorry card?”

My heart was so touched, and so thankful.  Aaron does know right from wrong.  He does feel bad when he’s been hurtful, even though it’s after the fact. 

So I told him that I had some cards at home.  Right after we ate lunch, before he took a nap, I got out my card box and found him a card that he liked.  It was blank inside, but not for long.  Short and sweet, he simply wrote these words, with her name underneath.

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I hope that he has learned a lesson, one that will stick and not be forgotten during his next crazy mood swing or unhappy moment. 

The last song on the 60’s CD was another one by “Lois” Armstrong – “What a Wonderful World.”  I want Aaron’s world to be wonderful, but I want him to also understand that he can quickly ruin the wonderful world of others by his words and actions. 

Likewise, he can make it right with things like his “sorry card,” and with an attempt to watch his words and his teasing.  Our job is to instruct, to understand, to be patient, to forgive…….and to be thankful for the wonderful world we share with Aaron, even on the rough days, always hoping that the rough days will be fewer and the wonderful days more frequent.     

Now, don’t talk!  Let’s listen to the music. 

Sing it, Lois!

Do You Wanna?

I hear it all day long.  I’m not exaggerating.  Honest.  At least all the part of the days that Aaron is home I hear it over and over.

He walks into the kitchen or wherever I am in the morning.  Most days he begins his first of many words during the day with these words.  Or if they are not the first words out of his mouth, they will be close to first.

“Mom, do you wanna…….?”

And then he often stops.  He just stands there, thinking of how to fill in the blank after “wanna.”  I used to ask what it was that he wanted, but I’ve learned to just wait.  And many times, really, he doesn’t even complete the sentence.  Sometimes it’s because this question is just a habit with Aaron.  Sometimes he just asks it in order to get my attention.  He asks without even a plan in mind as to how to finish the sentence.  Other times, he does have a motive.

“Mom, do you wanna play Skip-Bo tonight?”

“Mom, do you wanna watch The Incredible Hulk tonight?”

“Mom, do you wanna take Jackson on a walk?”

“Mom, do you wanna take me to Dillon’s?”

“Mom, do you wanna give me extra money?”

I could continue for a long time filling in the blanks to “Mom, do you wanna……?”  Just like Aaron does.

But really, a majority of the time Aaron never finishes his question.  It’s like the unfinished conversation cloud hanging over his head in a comic strip, waiting to be completed but never is.

All parents know that repetitive questions from young children can be tiring.  So it is with me and the “Mom, do you wanna……?”  But it’s not just that it’s tiring to hear it all the time.

I’ll admit that I sometimes get weary of being the usual object of his question.  I know however he fills in the blank….the long pause….it will somehow involve me.  I can no more than pull my chair up to my computer after a tiring day and I soon hear Aaron’s loud thumping down the stairs from his room.  Thump, thump, thump down the first flight of stairs.  Is he going to stop in the kitchen for a snack and go back to his room?

Nope!  Thump, thump, thump down the second flight of stairs……where he then stands behind me and stares at my computer screen, maybe loudly chewing gum.  And I wait, usually not very long.

“Mom, do you wanna…….?”

So honestly, at that point, I feel a little put upon.  No, Aaron, I do not wanna…….

I might be tired physically at the end of the day.  But there are many times that I’m tired in spirit.  Like I said, tired of being the one that Aaron comes to as he fills in the blank after “do you wanna……”

It’s a normal parent emotion, that conflict between loving your child totally yet needing some space.  But when your child is a grown man and he has special needs, the emotions of spirit tiredness can cause great guilt.  I have nice breaks from the responsibility of Aaron while he’s at his day group.  I’m very thankful for that.  Yet there are times at home that Gary and I both feel the weight of being caregiver and companion to our Aaron.

My friend, Wendy, recently wrote about this on her Care Page that she has for their son, Elijah.  Elijah, who prefers to be known as Mr. Speedy, has significant special needs.  We’ve been friends with their family for a long time.  Dan, Wendy, Jeremiah, and Elijah even came to the NHRA race at Topeka to see us and Andrew.

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So read what Wendy said:

As I read my text back to myself, ” E and Me…” I think how I often I write those words. I smirk to myself with a light heart; yet heavy sigh and realize this is my life, my calling, my journey. As the rest of the kids move on and become more independent, E and me are the constant. You can be sure you never have to wonder where E is for where you find (mom) me, you find E.

 How could I ever feel lonely? I have Jesus and my super hero, Speedy, making every day a story to reread. Something about the days with my Super Speedy give me a reason to giggle and reflect on how wonderful life is with my special E. His world is heavenly; childlike and simple; the way the Lord wants mine to be.

Wendy’s sweet, powerful words did me good.  Really good.  Often, seeing life through another’s similar eyes is just what I need in order to see my life more clearly.  As Wendy said, sometimes our lives are very childlike and simple, kept that way by the lives of our boys.  I may at times sigh and wish it wasn’t so, but it is.  And there is joy in that simplicity, even on the hard days.

Maybe I need to fill in the blanks to Aaron’s constant question more often. “Mom, do you wanna…….?”

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

Aaron, I wanna see you as happy as you are when you find your favorite “croysants,” as you call them.

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Or as happy as you are when you always, always stand in the back corner of the elevator at the doctor’s office……so you can feel the movement better.

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Aaron, I wanna capture your ability to experience life’s simple joys with great delight, just as much as if you were looking at the Eifel Tower or the Taj Mahal.  A lady bug, a dandelion, a frog, a song……they still tickle you to pieces.  That’s a gift!

Aaron, I wanna continue to be your favorite Skip-Bo partner……even when you cheat, and you laugh when I say, “Cheater, cheater – Pumpkin eater!!”

Aaron, I wanna count my blessings with you instead of numbering some things as burdens.

And when I feel burdened, I wanna take it to my Heavenly Father before I unload on you.

I wanna count it all joy, and know that when I don’t, God understands and He has new mercies every morning…..new yet unchanging.

Just like something else that’s unchanging.

“Mom, do you wanna…….?

 

The Detour

Aaron and I were in Dillon’s last week, where I told him to pick out some items for his Friday snack bag. I usually have his goodie bag all ready for him when he comes home on Friday but this week had been full of unexpected things that had made it impossible for me to have his bag done beforehand. He never minds picking out the items himself even though he also loves it when his bag is full of surprises. His treat bag is a reward for a week well done by Aaron…..or at least done, sometimes not all too well.

Better behaviors = bigger bag. Or so that’s how it was meant to go. Like his former teacher, Mr. Z, used to say – “Sometimes you have to make it worth his while.”

Aaron, ever the clever one, sometimes calls it bargaining. Nothing much slips by his awareness.

Anyway, it’s fun to give him something to look forward to and to work for at the end of his week. On this particular Friday, he had already walked fast and eagerly toward the bakery aisle where he knew there would be a container of croissants waiting for him. I gave my permission as he held the treasure up for me to see, but I said no to his hopeful request for TWO packages as he held up the second one for me to approve. Aaron just laughed, not at all surprised to be vetoed on that one, and then he lunged past the meat section toward the candy aisle……but not before stopping to loudly point out the lobster and shrimp like he always does. I could really just have a recording of my comments as we walk through the store on most days. He’s so predictable in many ways. In other ways, not so much.

Aaron turned left down the candy aisle, seeming oblivious to the sample lady standing nearby. This pleasant young lady had my attention, though, so I stopped at her little table to acknowledge her offer. I was distracted for a short time with little Twizzler samples and water flavor enhancers, chatting away as I am prone to do. We finished our brief conversation, said “Have a good day!” with our smiles…..and I noticed that her eyes darted down the candy aisle that was just behind us and her smile grew even larger.

I turned around and instantly knew why as she said, “Looks like he’s found some candy!” There was Aaron, getting down and personal with the Starburst Jelly Beans.

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And there was a man coming right toward him, pushing his cart and just looking at Aaron. I’m used to Aaron sitting down in store aisles when I’m not there to tell him no, but I imagine this man wasn’t at all sure of what was happening here. I was telling Aaron to stand up, but Aaron doesn’t stand up quickly from a sitting position…..and it’s quite a sight to see when he does……so now this man just swerved around Aaron and gave me a kind smile as he passed us.

I smiled back, thankful that he didn’t scowl or stare awkwardly.

At times like this I just need to have a sign that I can hold high. A sign that in bold letters says – DETOUR!!!

Aaron is truly completely clueless that he has done something a little strange or that he is disruptive. We face these moments constantly in his life. It’s just who Aaron is, and it’s who we must be as well.

We often must take a different route to our destination with Aaron, and hope that we arrive there…..and in one piece. What worked for our other two children didn’t work with Aaron and often still doesn’t. When our children were younger there were many moments of frustration from them as they tried to understand their unusual brother. They both went through times of questioning, as did Gary and I, about why Aaron acted the way he did. Even after the diagnosis of autism, we still struggled to understand what made Aaron tick.

There were times that Andrea and Andrew thought that Gary and I didn’t discipline enough. That we gave in too much. That we let Aaron have his way too often. Now that they are adults, things have settled down a lot and they really do understand their brother. They love him to pieces. It just takes time, education, and a little maturity to come to grips with a brother who can be disruptive and annoying……and super embarrassing in public!

We could be rolling right along in life and before we knew it…..DETOUR!!

A detour because of Aaron’s behaviors or actions…..a time we were forced to recalibrate…..to try to understand and to work through a situation. Or to be uber patient or thick skinned, despite the red on our faces or the words we wanted to say but couldn’t…..to Aaron or to insensitive others.

After all these years, when I turn and see Aaron sitting on the floor like he did at Dillon’s, it makes me laugh. He does look pretty cute and funny sitting there. I think people now are more aware, too, of these special needs. Their smiles and looks of understanding are more encouraging to us parents than they probably realize.

To you parents of special children, just keep the lines of communication open as much as possible with your other kids. Let them vent without judgment. Understand that age, hormones, peer pressure, and so many other things weigh into their reactions to their special sibling. Things WILL settle down with time. And in the meantime, try to spend some one-on-one time with your children, a time where they know they can safely talk to you and that you will have empathy.

And remember that we often have to take a detour, going around issues in a different way than we normally would, because that’s just how life is in their world……and we can’t change that.

Later Aaron shared some of his jelly beans with me. That’s the way it is. Understanding and love lead to sharing and sweetness.

Sticky and germy sometimes, but still it’s sharing, done Aaron’s way.

The DETOUR way.

Pictures of Kindness

Aaron has a kind side to him that we love to see. He’s always liked to share things that he has, including money, which we discourage. Lately I’ve been sending him to his day group with baggies of baby carrot sticks, pepper strips, gum, or something else along that line. He then will sit with his friends and share his food, hopefully satisfying his sharing urge without also giving away his money.

Aaron was so sweet over the weekend here at home. He knew that my friend, Atha, was not expected to live long. He was concerned about that, more than we usually see over those things. He asked about it several times. Then after I returned from the hospital and we watched Wheel of Fortune on Saturday, he held his hand out to me on the couch and said, “Here!” I held out my hand, not showing him my reluctance, and he dropped two very sticky jelly beans onto my palm. Therein lay my reluctance……sticky, germy, well-handled jelly beans. But I didn’t think too long…..didn’t give myself time to chicken out. I just thrust that candy in my mouth and thanked him broadly. Gulp!!

Later he sincerely wanted to give me even more jelly beans, so he got out a bowl…..of course!…..and poured a few of his prized jelly beans in the huge bowl, handing it to me proudly. Such kindness once again! And at least this time the candy wasn’t man handled first, but came straight out of the bag. Relief!

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As I watched basketball soon after the jelly bean gift, Aaron came downstairs with his favorite soft blanket. He proceeded to offer it to me, and once again I didn’t refuse. I just sat still while he placed the blanket over my legs, pulling it just so and making sure that my feet were covered. Sweetness!

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Last night, again while I watched basketball, he gave Gary and I each a piece of his favorite Big Red gum.  He knew that Atha had gone to heaven that morning.  He had seen me earlier, with tears on my face, and instead of calling me a cry baby like he usually does in his discomfort with emotion, he instead gave me a piece of gum. Empathy…….rarely seen!

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This morning Aaron wasn’t too happy about going to his day group. Sometimes Mondays are that way for him, just like they are for many when it comes to ending a fun weekend. I was afraid of a real meltdown this morning when I heard Aaron’s back scratcher go sailing up the hall floor. Aaron had thrown it. Oh dear, I thought.

A little talk and a little time helped. I cleaned his glasses like usual as I listened to him complain one more time, but not as energetically as before. And once I told him that we could take Jackson with us, all doubt was gone. Happy Aaron was ready to go!

Once at Paradigm, Aaron ran inside while I got Jackson ready to be swamped by Aaron’s friends. His collar and leash in place, Jackson hopped out of the van and enjoyed all the petting and exclamations that usually happen when he’s being adored. But Aaron wasn’t totally happy until he made sure that his very special friend was able to be wheeled out in her chair. “S” was all smiles and even talked to me about big old Jackson as I made sure that Jackson was right where she could see and touch him.

Soon we were back in the van, Jackson and I, and Aaron’s group began walking the few blocks to the nearest Quik Trip. I looked as I drove away and what I saw warmed my heart, so I snuck into a parking lot and waited for the group to pass by. This first picture shows the main group.

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Look who came at the end. Sorry for the poor quality of these pictures.

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There was Aaron, walking with “S” and one of his favorite staff, Antoine. Aaron just loves “S” and another girl at his day group, both in wheel chairs. This act of kindness, Aaron walking slower so that he could stay with “S”, just made me very thankful and happy for the kind heart that Aaron really does have.

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Kindness. I just can’t say enough about the importance of that quality in any of us, but especially in big old blustery Aaron, who at times seldom shows concern for anyone other than himself. Emotion and thinking of others is a characteristic that hasn’t usually come easily to Aaron over the years. Expressing those traits is hard for one with autism.

God was good to give me these evidences of Aaron’s heart this past weekend. He was good to allow me to see Aaron, unaware of my presence, showing such kindness to his special friend.

We never know what a day with Aaron will hold. Kindness TO Aaron certainly helps make situations smoother.

Kindness FROM Aaron…..priceless!!

Unto The Least: A Man Named Richard

 

I remember him so well.  Richard……….nondescript, uneducated, stinky, and often unwelcome Richard.  Our paths crossed because Richard attended the same church where I grew up and where I worshipped.  Our paths also crossed because God ordained it to be so.  God ordained it to be so………so that I would learn a lesson.   It was a lesson best taught by the method that God loves to use – the weak things of the world confounding the mighty. 

 

Richard was a very short little man.  I often think that he was our version of Zaccheaus there in Princeton, West Virginia where I was raised.  Richard didn’t have much education and he was also very simple minded.  Today I’m sure he would be classified as being developmentally delayed, at the very least.  Yet he had served our country in World War 2, returning to Princeton when his time was up.  I remember hearing the story of how Richard wanted to help build the parsonage for our pastor at Johnston Chapel Baptist Church.  The men decided that Richard could dig the sidewalk, and so they used twine and little posts to outline the walkway that Richard should dig.  As Richard dug, his shovel cut the twine and it veered off to the side……..and Richard continued to follow the twine with his digging.  I’m not sure if the men let Richard dig anymore after that or if they found another safer job for him to do. 

 

I remember Mom and Dad loading us five kids into the old station wagon and then leaving for church.  We never missed a service unless we had a fever or were throwing up, or maybe if blood was involved.  This was in the day of services every Sunday morning, Sunday night, Wednesday night, and anything in between.  This was also in the day of revival services that lasted at least a week, and sometimes longer if the Spirit led.  There were mission conferences, too, as well as other special services thrown in here and there.  The Kings did not miss church.  If Dad was working, then Mom loaded the station wagon and off we went. 

 

I loved going to church, but I always dreaded that drive up Thorn Street because often we would see him………..Richard, standing on one of the corners of Thorn Street, not far from his house.  Richard, standing there waiting for a ride to church from one of the church members that he knew would drive by in our little town and see him, and offer him that ride.  Richard, whom I was sure never, ever, ever took a bath.   The smell was just awful!  We kids would strain our necks to look ahead to see if he was still standing there, hoping against hope that some other family had come by before us and picked Richard up.  If we saw him, we would beg Mom or Dad not to stop for him………..to let someone else have that privilege on this day. 

 

But no……..Mom and Dad would always stop for Richard.  He would hop in our already crowded car and immediately we would be assaulted by that odor.  We girls learned a trick.  We would take a small purse-size container of perfume and try to hide it in our hand as we held it up to our nose.  Or at least have some perfume on our wrists that we could sniff in the hopes of blocking out that smell.  I’m not sure what John did to combat the odor but at that point it was each King for himself.   If no one was able to give Richard a ride, then he would walk to church, regardless of the weather……and that was probably a five mile walk.

 

Richard would talk, talk, talk.  He had a very fast, clipped speech.  I can still hear him make a comment and then say, “Isn’t that right?  Huh?  Isn’t that right?”  Then he would laugh and launch into something else, and ask again if that was right.  If he wasn’t talking, he was making a clicking sound with his tongue, as if he was getting food out from between his teeth.  He probably was, since I also doubted that Richard ever, ever brushed his teeth……….which just added to his unique smell. 

 

At church, Richard would lean up on the pew in front of him and talk to whomever was sitting there.  His eyes would dart between the people as he rapidly talked, and clicked his tongue, and laughed, and said, “Isn’t that right?   Huh?  Isn’t that right?”  The large church helped to spread his odor out some and keep it from being as strong……….unless you were the fortunate ones who were sitting in front of him and with whom he decided to engage in his mostly one-sided conversation.   Needless to say, when I was older and had the opportunity to sit in front of Richard……….I tried to find another seat.

 

Richard, though, was good at math.  I remember how that always surprised me.  On Wednesday nights, four men would count certain sections of church and then give the number to the pastor out loud as they were called upon to do so.  Richard almost always added those numbers faster in his head than Preacher Jimmie could do on paper, and he was usually right.  Amazing indeed!  And also amazing was the fact that Richard loved the Lord in his own simple way and was one of the most faithful church members that I have ever known.    I don’t remember seeing Richard carry a Bible and don’t know if he could read, but he knew his Bible.

 

Time marched on.  We King kids grew up, went to college, married and had our own lives.  Mom and Dad both eventually retired from their jobs.  They continued to be active at Johnston Chapel, enjoying the freedom to spend more time visiting the sick and those who were shut-ins.  Among those that they cared for, none stood out more to me than their continued care of Richard.  He had aged, of course, and time had taken a toll.  Richard was not only feebler, but was also dealing with the ravages of cancer.

 

I know that others helped with Richard, too, but Mom and Dad did a great deal for him in his old age.  They helped him find a better house to move into, and then helped him move his meager belongings.  They were shocked at what they found as they cleaned his house.  Such filth was hard for them to imagine!  And there in his closets and throughout his house were stacks of Christmas presents that church friends had given him over the years, still wrapped and unopened.   Inside were clothes and toiletries that he surely could have used over the years, but when questioned about it Richard said that he didn’t open them because he didn’t need anything.  Mom and Dad bought him clean clothes and new things, but Richard still preferred his old belongings and his old way of living.  Mom would take him home-cooked food and encourage him to eat better than he was.  She and Dad bought him a small refrigerator to keep his food from spoiling, but Richard refused to plug it in because he didn’t want to waste electricity. 

 

Dad helped Richard obtain his VA benefits, and then made sure that Richard started going to the proper doctors at the VA hospital.  He took Richard for many of his doctor appointments.  This was no easy task in many ways, but none more so than just the pure embarrassment of being in a public waiting room and doctor’s office with poor smelly Richard.  Mom and Dad tried countless times to teach Richard and to urge Richard to use better hygiene, but I don’t know that Richard ever took it to heart.  Dad would explain things to the doctor, but the people around them that they encountered must have wondered about Richard and about Dad.  Eventually Richard’s cancer became more complicated than what the local VA hospital could handle, so Dad took him to the nearest major VA hospital………..in Richmond……….a six hour trip one way.  Twelve hours confined in a car with Richard, as well as the time at the doctor appointments.  The smell……..the constant talking……….the clicking tongue.   Yet Dad just smiled and did what he knew that God would want him to do………..to take care of this little unwanted and unwelcome man. 

 

When Dad tried to see if Richard qualified for any other assistance such as Medicaid, it was discovered that Richard had money.  In fact, he had too much money to qualify for any government help.  Richard never offered to give Mom and Dad, or anyone else, any money for the things they did for him.  They wouldn’t have taken the money anyway.   That was not the motive.  A brother that no one knew about showed up at Richard’s death, and Mom and Dad walked quietly away from any further involvement……..but not before they gave Richard one of their burial plots since he didn’t have anywhere to be buried.

 

Mom and Dad didn’t want any public acclaim for what they did for Richard.  They just loved the Lord and they let the Lord’s love fill their hearts and direct their actions.  I know at times their service to Richard was tiring, was frustrating, was annoying, and very thankless.  Yet Mom and Dad, and the others who served Richard, did so because they lived out their faith and they believed Jesus when He said, “When you do it unto the least of these, you do it unto me.” 

 

Dad is with Richard in heaven now.   I sometimes try to imagine it, the two of them together up there.  Both have new bodies and are totally equal physically and mentally.  Did they hug when they saw each other?  Are they ever beside each other as they sing and as they worship?  Richard doesn’t smell anymore and Dad doesn’t have to explain him to anybody, or be embarrassed.  I wonder if Richard still talks fast, and does Dad still smile patiently at him?  I doubt it, but it’s fun to think about. 

 

And we kids are left with not only memories, but more importantly, we are left with a real example of selflessness that my parents demonstrated.  They loved the unlovely in more than word…………they loved also in deed.  I know that each of us has taken this lesson to heart in our own lives in various ways.  But I doubt that anyone could be any more kind and any more patient than my sweet parents were to Richard.

 

I can’t wait to see Richard in heaven!  I’ll give him a hug……….and no perfume bottle needed!