Giving Away Kindness…..Aaron Style

In the last blog I wrote about Aaron, I talked about how much it means to us when others treat him with kindness.   Simple Kindnesses   Even the smallest kindness shown to Aaron is just huge to us, and to him. 

On the flip side of kindnesses being shown to Aaron is the issue of Aaron showing kindness to others.  Sometimes we’re happily surprised at how Aaron will be kind to others.  Sometimes we’re sadly embarrassed at his total lack of kindness.   We never know what a day will hold.  We never know what an hour will hold.  We actually never know from minute to minute what Aaron will display toward others. 

Aaron is pretty self-centered, which is common for those with Asperger’s.  Empathy doesn’t come naturally to him most of the time.  For instance, if I’m crying it makes Aaron either angry or scared.  He doesn’t ask what’s wrong or ask me if I’m OK.  Instead, he might make fun of me or get very agitated.  I know that about him, so I try to never let him see me cry.  I can’t invent that sort of empathy in Aaron, try as I might. 

Therefore, when Aaron shows that he cares about someone, those of us who live and work with Aaron are delighted.  I wrote a few months ago about how I saw Aaron walking to Quik Trip with his day group.   Pictures of Kindness   He purposely waited to be the last in line so that he could walk with his friend, S., who is in a wheelchair.  It melted my heart to see that about him. 

We make it a purpose to help Aaron see practical ways that he can be kind.  For instance, when we eat out I make sure that Aaron always says thank-you to our server.  The same goes for thanking those who help us at Wal-Mart or the grocery store, Great Clips, or anywhere else we go where we receive assistance from others.  I don’t think Aaron would do that by himself if we didn’t remind him over and over to do so.  Verbal kindness is very important to all of us, and we want Aaron to be verbally kind to everyone.  Trust me, sometimes his verbage is anything but that, yet we have to keep reminding and reminding. 

A couple weeks ago, when I went to pick Aaron up at his day group at the end of the day, one of his staff came out to tell me that it was a rough day with Aaron.  I still feel like the parent of a disobedient, still learning kindergartner on those days.  Yet we need and want to know what’s going on so that we can help deal with it and address it at home.  A couple days later, this same staff headed for my car as I waited for Aaron.  Aaron ran behind her, all smiles, and opened the passenger door with gusto as I rolled down my window to talk to Melinda.  I was dreading what I would hear, but right away I was all smiles like Aaron as I listened to Melinda tell me that Aaron was awesome and wonderful and fabulous, and all other sorts of affirming adjectives.  I think I was happier than Aaron was to hear those words! 

And there on Melinda’s shirt, like a name tag, was a note that she pointed out to me…….a note that Aaron had written.  It said, “Melinda is cool.”  She was wearing it with pride, all the while confirming to Aaron that sweet behaviors bring sweet rewards of praise and smiles.  Aaron had written a note to another staff that day as well, on her calendar.  It was just extra sweet and funny.

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At his day group, Aaron also loves to give things away.  We’ve really had to work with him to quit giving away his money.  He’ll give others candy, gum, fruit or sliced veggies from home, whole cucumbers or squash from our garden that he has sometimes hidden in his shorts pockets…….you name it, Aaron has probably tried to give it away at one time or another.  And while that’s nice, there are times we have to draw the line and say no.

There are times that helping Aaron to be kind doesn’t necessarily work into my schedule, but I have to remind myself that he needs help with carrying out some of the things he really wants to do.  For instance, a couple weeks ago he wanted me to bring Jackson with us when I dropped Aaron off in the morning at Paradigm.  I wasn’t really in the mood to do that, but finally I agreed and off we went, Jackson sitting on the seat in the back of the van looking all around and Aaron happily talking in the front seat.

Once at Paradigm, I attached Jackson’s leash to his collar and we went inside.  The other clients love Jackson, so he was received with lots of petting and hugs.  But the one person that Aaron wanted the most to see Jackson was his friend S., who is wheelchair bound and bent over with her disease. 

“Mom!!  Come over here and let S. see Jackson!” Aaron loudly told me from across the room. 

So I took Jackson over to S., and I was so happy to realize that big old Jackson was just the perfect height for S. to just reach over and pet his head.  She doesn’t move well, but Jackson was able to stand there and let her pet him easily.  Aaron stood there rubbing his hands together the way he does when he’s very happy, his face just one big smile.

And the smile on her face was worth every single extra minute it took me to bring Jackson with us that morning.  I left there later with a huge smile on my face that matched hers……and Aaron’s. 

Aaron has also shown kindness to S. by giving her food.  He has told me that sometimes he has to put it in her mouth, and that it seems weird to him to do that.  But then we talk about her limitations and I remind him that he is being a true friend to her. 

He is also sad when he sees her sitting alone.  I’m not there to see how much time he spends with her, but he has said that he does talk to her sometimes when she’s alone.  It makes Aaron sad to see her lonely, and it makes us very glad in that case to see Aaron sad.

One other thing we recently did was to make cookies for Aaron to take to his friends.  It was a week ago on Sunday afternoon that we made the cookies after I suggested it to Aaron the day before.  He was very happy about this idea.  I had him help measure and pour and scoop so that the cookies were genuinely from his hand.

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He enjoyed taking them the next day and sharing them, giving the whole bag with the remaining cookies to one of the guys when I picked him up that day. 

However, we got an incident report concerning the cookies, too.  I think Aaron wasn’t so nice sometimes with sharing his cookies.  This is so typical.  I can’t let it stop us from doing this nice gesture that others enjoy, but it is discouraging sometimes to see Aaron take something good and make it an ugly issue.  We’ll talk about it during our next baking session, and I’ll drop Aaron off that morning hoping and praying that he’ll be nice to everyone and share equally. 

It’s all a lesson to me on how we can’t give up on Aaron.  We have to keep reminding……and training……and instructing…….and teaching…..

And putting ourselves out there in order to help Aaron become the young man we want him to be, at least most of the time.  We can’t expect it all of the time, but we can’t quit trying. 

Parenting never quits for any of us with children, but with our Aaron the parenting REALLY never stops.  Other special needs parents can certainly agree to that. 

May as well make cookies, right?  And be sure to eat some while they’re warm!    

 

God, Are You Listening?

Gary and I are far beyond the baby years, and we have no grandchildren yet, but we still sleep with a baby monitor beside us every night.  It sits on my nightstand as we listen for Aaron’s nocturnal seizures.  It sure is a handy tool to have!  Most of Aaron’s seizures are at night, in his sleep, so the monitor enables us to hear him and to go help him. 

Aaron never remembers his seizures, which is a blessing.  But he has seen others have seizures at his day group, so he has seen what they can be like.  And he is well aware of how he feels afterward, with a terrible headache or nausea or waking up in a wet bed.  Sometimes he loses his sense of taste for a day or two.    It’s a reality of his life that he accepts remarkably well……probably much better than I do.

In the last couple years, though, Aaron has shown a degree of fear concerning his seizures.  He’s not one to sit down with me or Gary and verbally express his fears.  But every single night as we go through his bedtime routine, he asks me two questions.

First:  “Mom, is it going to rain tonight?”  He just must know if it’s going to rain.

Second:  “Mom, are you turning the monitor on?” 

Sometimes I beat him to it and after our goodnight hug I answer those two questions before he can ask them. 

“Good night, Aaron.  Sleep good.  I’ll see you in the morning.  Love you!  And it’s not going to rain, and I will turn the monitor on.”

But if I’m going downstairs to fix the coffee pot or whatever, Aaron always says, “Do you want me to bring the monitor down to you?”

And on many nights, just for extra measure, we will hear Aaron walking up the hall and barging into our bedroom if the door isn’t locked.

“Mom, is the monitor on?  Is it on right now?” he asks.

Sometimes when I’m extra tired I get impatient with this routine, and then I feel guilty about it.  That’s because I know why Aaron is so concerned about that monitor.  I asked him about it once, knowing that my questions can put thoughts into his head, but still wanting to hear what he had to say.  So I asked him if he was scared of having a seizure, and he told me that he was.  We didn’t talk deeply about it, but his answer was enough to pull at my heart and make me think as I often do about how I would feel if I was in his shoes.  Seizures are definitely scary, and Aaron most definitely wants me or Gary there with him if he has one.  Of course he does.  I would feel the same way.

So every single night, and also for every single nap on days that he is home, I make sure he knows that the monitor is on and that I am listening.

The monitor did its job last night…..three times, actually.  Aaron’s first seizure was a little after 11:30, and then two more followed during the early morning hours.  He’s sleeping on the couch now – has been for a few hours since he woke up before 6:30 to discover his condition, change pajamas, and make his way downstairs.  He took his morning meds and went right back to sleep, waking up awhile ago to ask for his cups of coffee, and then back to sleep again.  Seizures take such a toll on his body.  They take a toll on my heart.

But this morning…….as God always, always does…….my heart was comforted by reading from the book of Psalms. 

“He who keeps you will not slumber.  Behold, He who keeps Israel will neither slumber nor sleep.”

I can hear me now. 

“God, do You have your monitor on?  Are you listening in case I need you?”

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And God, Who is always patient with me, tells me once again that He doesn’t slumber or sleep.  Did you know that “slumber” means “nodding off?”  Like I do sometimes while Aaron and I are watching Wheel of Fortune…….and then Aaron yells, “MOM!!!  You’re not watching!!!” 

But I don’t have to do that with God…..and neither does Aaron.  God won’t sleep deeply and He also won’t even nod off.  He’s standing by Aaron’s bed with me during every seizure.  Then He stands by my bed when I lay back down and try to go back to sleep, which is often hard to do.  He knows my fears for Aaron and He understands my hurt for him, but He also reminds me that His plan is sovereign……His plan is best……even if His plan isn’t understandable to me. 

It’s just really comforting to me to know that God never sleeps, even at night, and that He is beside me as I stand beside Aaron.  And when I feel uncertain and ask Him once again if He’s really there……if He’s really listening…….He just gently reminds me that He is always there and He is always listening.  

God’s just a very good Father to me and to Aaron, and to each of us who know Him.  Even if our view of Him is through our tears and our fears, we know that God is right there with us through it all.   

Simple Kindnesses

I was at Aldi the other day, having finished my grocery shopping and unloading my groceries from the cart to the back of my van.  Now, if you know anything about Aldi you know that in order to get a shopping cart you must insert a quarter into the cart slot.  Your quarter releases the cart chain and you then have your shopping cart.  When you’re all done, you simply return your cart to the cart holding area, insert the chain, and out pops a quarter for you to take.  You never see random shopping carts littering the parking lot, and you never see an employee pushing a load of carts back to the cart area.  That’s because everyone returns their cart in order to retrieve their quarter.

So there I was, empty cart in hand, when I saw a woman walking in my direction.  She was on her way to do her shopping, her quarter in her hand.  I offered her my cart and she then offered me her quarter, but I did what many other shoppers do…….I told her to just keep her quarter and she was welcome to the cart.  Now you would have thought I had offered to save her $25.00 rather than just $.25.  She was so appreciative, and she said that she would pay it forward to someone else.  I know that Aldi shoppers do this all the time, giving fellow shoppers their empty carts without taking their quarter.  As I got in my van I was all smiles, just like the woman was who now had my cart and still held her quarter.  I thought of what a simple deed that was and yet how very happy it made that woman, and also how very happy it made me.

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Showing kindness can be such a simple act, yet can have such profound effects on the person to whom the kindness is given.  Most simple acts of kindness take no pre-planning or preparation at all.  They simply take an open heart and an eye for opportunities that come our way.

I’m always so thankful for those who show extra kindness to Aaron.  It means so much to me as I’m out with Aaron to see those who show patience and respect for him, even if he’s standing there talking to them about aliens or a computer game or whatever else is in his head……while he might be rubbing his hands together in excitement……or scratching himself inappropriately…..or laughing loudly.  Most people don’t know what to do in that situation but there are those who seem to just be gifted with a special understanding of our special son.

There’s the manager of our nearby Subway, whom I noticed has a knack for focusing on Aaron as if he’s all that matters to her at that moment.  She is completely relaxed with Aaron, and when she told me that her mother worked with special needs and she grew up with those individuals in her home, then I understood.  She asks Aaron what he wants to eat, not asking ME what Aaron wants.  She was on her break one day, sitting in a booth trying to eat her supper, when Aaron spied her and remembered that she paid attention to him.  He stood there talking about the latest movie he had seen, and she just looked up at him and listened as if he was discussing the very most interesting and important thing in the world.  She answered him when he asked her questions.  She made him feel that what he said was valuable.  I wanted to kiss her!!!  But I knew that might be taking it a bit too far!  🙂

There’s Shelly, the hygienist at our dentist’s office who cleans Aaron’s teeth.  We have Aaron’s teeth cleaned every two months.  Shelly should get a medal.  She is very patient with Aaron and knows just how to handle his desire to talk or to stretch or to push the instruments out of his mouth.  Look what she let Aaron hold at his last visit.

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This kept Aaron’s hand occupied and gave him something to think about other than what was going on inside his mouth.  Perfect!!

There was the girl at the theater snack counter this past Sunday.  I thought Aaron was right behind me as I bought our tickets, but I turned and he wasn’t there.  I went to one side of the snack area, but there was no Aaron.  I finally found him on the other side, and by this time he was not in a line but was right up at the counter where a young woman was waiting to take his order.  Aaron saw me and yelled, “MOM!!” as I hurried over to where he was.  The first thing I did was to ask the young woman if Aaron had pushed ahead in line and she assured me that he had not.  I knew instantly that she understood.  A mom just knows.  Relief washed over me as she asked Aaron what he wanted, looking him in the eye, and smiling at him with kindness and not with uncertainty.  She just had a wonderful way about her with Aaron, treating him with calmness and with great ease.  I wanted to quickly thank her specifically for her kindness to Aaron and maybe ask her about her background, but by then Aaron had moved on and was trying to stuff a huge wad of napkins in his pocket and locate a handful of toothpicks, so I had to run.  I’m sure she got that, too.

This encapsulates exactly what I’m trying to say:

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I just love it when somebody treats Aaron like he’s a somebody……because he certainly is a somebody.  He’s special in his own right, and not just a person with special needs.

It doesn’t take someone doing some huge thing for Aaron, like taking him on a two month vacation trip…….although if you want to do that, I might say yes.   No, just like my Aldi cart and the quarter, the kindnesses that mean the most in my everyday life and in Aaron’s everyday life are the “small” kindnesses.  These acts in their everyday hues are really enormous bursts of color to me and to Gary and to Aaron.

Each of us can do the same for everyone that we encounter.  The littlest gesture can lighten a load in others that we don’t even see or know about.  It’s never a small thing to be kind.  We have no idea of the lasting impact a word, an action, or a smile can have on those random people that come across our paths every day.

There’s another aspect to kindness that we have with Aaron as well.  It’s about our efforts to teach Aaron to be kind.  On some days he acts as if he’s never heard the word, but on other days he amazes us and others.  I’ll save that for the next blog.

Aaron does give me plenty of material to write about, after all!

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…….?

 

A Fun Day at Tanganyika

I’m a little late to blog about our fun day at Tanganyika Wildlife Park.  This jewel is just a mile up the road from our house!   Gary and I took Aaron there on Memorial Day.

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We love it because it’s beautiful……and it’s not too big, so Aaron doesn’t get all tired out……and you have access to so many of the animals.  You can walk among them, feed them, ride some of them, and have some sit on your lap.  We didn’t ride the camel this year or have any animals on our lap, but we have done that in the past.  Anyway, it was a very nice day, so I wanted to share it with you in pictures.

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Come back and see us again!!