Category: Asperger’s Syndrome

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!!

All I Need to Know

He threw the glass across the kitchen this morning.  At least it was a plastic glass……and at least it was empty.  So began our morning.  Aaron got up just in time to go out to Gary’s truck in the driveway and hug him goodbye.  He was happy and I was hopeful.  Yesterday was up and down with Aaron.  He didn’t like me for awhile but then settled down and we had a nice evening.  We watched Wheel of Fortune, and played Skip-Bo later while eating strawberries.

Simple pleasures, but not always such a simple life with Aaron. 

This morning as we walked back into the house after his goodbye hug for dad, he decided that Mom was the bad guy again.  He told me he wasn’t going to go to Paradigm today, and on and on. 

Oh, the complexities of his mind!  The challenges of autism!  Physical issues I can handle so much easier because the flesh and blood of those special needs is right there to see and somehow grasp.  But the workings of the autistic mind are sometimes anyone’s guess, and this morning I was in no guessing mood.

So I launched back after his verbal barrage got to a certain point.  I pointed my finger at Aaron and I very firmly put him in his place.  But Aaron rarely stays in the place I put him.  I may feel better for a few seconds, but then he opens his mouth and his resolve is more set than ever……his resolve to win the war, even if he loses a few battles in the process.  I know this about Aaron, but I sometimes act despite what I know.  I act on my feelings, and I often regret it. 

The rest of the morning was filled with Aaron telling me he wasn’t going to talk to me anymore, all the while talking to me to tell me that he wasn’t going to talk to me.  Over and over and over.  He also didn’t want me to talk, so I mostly remained silent, which actually drives him crazy.  There was no winning for either of us at that point.

Aaron went to Paradigm, wanting me to come in with him so I could tell Barb to be sure he was nice……and Barb told him the same thing I had said earlier, that he was the only one who could be sure he was nice.  I don’t know for sure how his day has been.  I don’t know for sure that I want to know.

We’ve had lots of storms in Kansas lately.  On our way back from Topeka recently, Gary and I drove through the beautiful Flint Hills.  There on the horizon were storm clouds, and we were headed straight into them.  There was no avoiding the storm.  No matter what road we took, the drive home led into the storm. 

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And again yesterday, driving Aaron to his day group, we were facing storm clouds.  There they were, dark and threatening. 

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Driving into a storm reminds me of living with Aaron.  It also reminds me of Moses.  I’m reading the book of Exodus, and in chapter 3 God spoke to Moses in the burning bush.  He told Moses of the job He wanted him to do…..to lead the children of Israel out of Egypt.  And Moses said, “Who am I, that I should go to Pharaoh and bring the children of Israel out of Egypt?” 

The first part of God’s answer was simply this: “But I will be with you…..”

God didn’t say, “Oh come on Moses, you’re the man!  You’re so great!  I know you can do it!”

Moses’ sufficiency rested only in those six words that God first spoke: “But I will be with you…..”

Moses’ sufficiency rested only in God.  Not in himself…..not in his family…..not in his royal connections from years past.  No.  The strength and wisdom and courage that Moses needed rested only in God.

I’m not proud of the times I blow it with Aaron.  I’m not proud of Aaron’s behaviors on the bad days.  I often feel like Moses.

“Who am I, that I can parent Aaron?  Who am I, that I can have patience enough on the bad days to tolerate the behaviors?”

And God’s answer for me is just the answer He gave to Moses: “But I will be with you…..”

It’s no mistake that I am Aaron’s mother.  God put me on this road because of His sovereign plan for me and also for Aaron.  I may feel on some days that I can’t do this correctly, or do it at all, but this is where God has put me.  God doesn’t make mistakes.

So here I am, driving on this life road and headed into yet another storm.  I know I’m not alone in this.  I know of others who are feeling the pressure of the dark clouds on their horizons, and are soon overcome with rain and lightning and thunder.  But if you’re God’s child, He is with you.  He promises you strength, wisdom for the asking, peace in your inner being, and joy deep down.  Whatever your situation…..your worry……your pain…..your secret turmoil……your fear…..your failures, God’s word to Moses is God’s word for you…..for me…. “But I will be with you….”

I don’t always feel this fact.  But I know this fact to be true, this fact of God being with me, and so I can rest in that knowledge even when I don’t feel it.

After I dropped Aaron off and drove home yesterday, this was my view.  All the time I was driving into the storm, just behind me was the lifting of the clouds. 

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It’s true of my life, too.  God will relieve the burden, even if the situation remains.  He relieves my burden by reminding me of Who He is, like He did to Moses.  And reminding me that He is with me, always. 

Even when I say, “Are you sure, God?  Did I take a wrong turn somewhere?  And look how I’ve messed up!!”  And He answers once again, “But I will be with you…..”

Dark clouds, or bright sky.  Angry Aaron, or happy Aaron.  God is with me.

On some days, that’s all I know.  But on every day, that’s all I need to know. 

 

The Coupon Box

One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper.  I’ve blogged before about his coupon cutting process.  Believe me, it’s just that……a process.  A precise process that he is 100% convinced only he can do.  I, especially, have no business cutting out coupons because I am a dismal failure at that task.  Those are Aaron’s thoughts, not mine.  Aaron cuts as closely on the dotted line as he possibly can.  He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can.  It’s an art.  Other odd sized pieces of left over coupon paper fill another trash can.  The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side.  And the finished coupons are placed in precise order in the coupon box with the red lid.  It truly is fascinating to watch him cut coupons. 

Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday.  Such was the case a few weeks ago.  Aaron had completed his coupon cutting set-up in the family room.  His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet.  He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside.  So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.

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“Wait,” I said.  “Can’t you still keep the old coupons in the box?”

“No,” he simply answered. 

“Because you can’t mix them up, right?” I asked, knowing full well the answer.

“Yeah,” he again simply answered as he sat on his pillow and started his mission.

Yeah is right.  Aaron can’t stand to mix the old coupons with the new coupons.  He does it on occasion, but not often.  So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order.  Aaron’s way, which to him is the only right way.

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Aaron’s life, and living with Aaron, is so much like his coupon clipping process.  He wants everything in its place…….the details of his life in a certain order.  This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over.  Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process.  Except life’s not like that, not for Aaron and not for any of us.  You and I can adapt to these changes for the most part pretty easily, but not so Aaron.  Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.

Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team.  Aaron knew that his two caregivers were coming to take care of him.  He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes. 

“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go.  “NO parents!!” he added as he rubbed his hands together and laughed loudly.  He is at least very honest.

“What time are you leaving?” he asked, though he had been told how many times before? 

“We’re leaving at 3:00,” I answered.

“Can’t you leave early?” he asked.  “Like 2:59?”

He was completely serious about that.  So I smiled when I hugged him goodbye later, and told him that it was 2:52.  He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.

Aaron calls repeatedly while Gary and I are away from home.  Every day, several times a day, he calls.  So much for his “NO parents!” comment!   Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy.  After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group.  He wanted to stay at home, which is common for him, and he wanted to be there when we arrived.  I always question what to do in that case.  Let him just stay home…..but is that giving in?  Make him go…..and maybe pay the consequences of that decision.  Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.

As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day.  I said that I would. 

“Mom!” he said.  “I mean to pick me up before 4:00.  I want you to pick me up at 3:59!”

Again, he was entirely serious.  “3:59?” I asked him.

“Yes!” he answered.  “Don’t wait until 4:00!  Will you pick me up at 3:59?” 

So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm.  However, he had a miserable day.  The other clients had a miserable day.  The staff had a miserable day.  Thankfully they are so understanding and forgiving.

It was around 1:30 when my phone rang.  I heard Aaron on the other end, voice thick with tears.  I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say. 

“Mom,” he started……and I just told him that I was coming to get him. 

“No!” he said strongly.  “I want you to come at 3:59!!”

“But Aaron,” I countered.  “You’re very upset now so let me come and pick you up.”

“No!!” he forcefully repeated.  “I want you to come at 3:59!!”

He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him. 

A short time later, he and I sat in Freddy’s.  I figured a Freddy’s burger and fries would be the best medicine for him.  He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears.  As I asked him why he was so upset that day, he couldn’t tell me why.  I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.

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So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper.  The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain.  He cannot just simply deal with issues like I can.  So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do. 

However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out.  Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.

I just want to dump the whole thing and start over!!

Start over with an empty box……new coupons…..all in precise order!

But life’s not like my coupon box with the red lid.  I can’t just dump days or events out on the table, and arrange the new day the way I want.  And neither can Aaron.

But we can start each day with a clean slate, and try again.  We can build on the old experiences and the lessons they taught us.  Clipping here……cutting there…..arranging our thoughts and our responses in the right way.  We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly.  And we have plenty of those last two, believe me. 

And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his.  We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.    

There’s one more thing about starting each day anew.  God has promised that His mercies are new every morning.  They’re not based on yesterday and on yesterday’s failures.  His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.

Can I be any less for Aaron? 

I don’t think so.  And I can put that promise on the very top of my daily coupon box.

The Cold Sore

You know from the blog title that what I’m going to write about today has something to do with the pleasant subject of a cold sore.  Let me tell you, I am cold sore weary.  Looking at it…..talking about it……putting medicine on it……discussing every little detail of it……

It’s just tiring.  Oh, and I don’t have the cold sore.  Aaron does.

You probably guessed that.

I do feel sorry for him, truly.  Cold sores are painful.  He’s never had one before, so this new experience has been very impacting to him.  You would think with all the medical challenges that he faces, a cold sore would be minor.  But not Aaron. 

He will talk a sore to death.  He had a little cut on his knuckle not long ago, and I heard more about that little cut than I ever, ever want to hear again.  I have to say, though, that some of his statements are really funny…..or really insightful……or downright confusing.

“Mom?” he asked one morning as he held his cut finger up in front of my face.  “Is the blood holding in the sore of the skin?”

Ponder that one. 

“I’m not sure, Aaron” – has become a routine answer for me.  Or, “Google it, Aaron.”  That’s another good one.  Both are said in a rather monotone voice after about day three or four of Aaron dissecting everything there is to possibly dissect about his sore or bruise or bump…..or cold sore now. 

I wish I had written down all of Aaron’s comments about his cold sore, or how many times a day he has talked about it.  This unusual malady has him stumped for answers and explanations, so he talks it to death.  My monotone voice is in full force, trust me.  Aaron doesn’t notice that, of course.

So here are some of his statements about his cold sore.

“Mom, it hurts when I eat because I open my mouth high.”

“It stretches!”  (Talking about how it cracks)

“I feel it pumping.”  (That feeling of your heartbeat in a sore place)

“It gets dark…..the color of the sore.”  (How it looked as it scabbed over)

“Mom!  The medicine fell off!”

And after I told him that it gets worse before it gets better, he paused a minute before saying, “The reason it’s getting worse is because it’s getting better.”

Sure, Aaron.  Yeah.  We’ll go with that.

On Friday he went with Amy, one of the staff, to pick up some things for Paradigm at a drug store.  Aaron put two and two together really quickly.  Just that morning on our way to Paradigm, he and I had stopped at our Dillon’s and bought some new cold sore medicine.  But with Amy at a new drug store, he of course engaged the pharmacist in a conversation about his awful cold sore.  Aaron had news for me about what to do to treat his cold sore, according to this concerned pharmacist, but of course it’s what we were already doing.  Aaron didn’t bother to tell him that because he loved all this new attention. 

So today Aaron went with me down to Dillon’s again.  We went up and down the aisles while I checked this and bought that, and Aaron tried to talk me into more than his salad…..and croissants……and flavored water.  I ended up at the pharmacy, where I was checking on some calcium on the shelf, and where Aaron spied Marc and Greg in the pharmacy.  We have known Marc and his family for years, and Greg has gotten to know us more recently.  Aaron wasn’t concerned at all about whether we know Marc and Greg.  He only saw a fresh opportunity.

“Hey!” I heard Aaron say as I was bending over a bottle of calcium.

And I knew.  I knew immediately, from years of experience, what Aaron was doing.  He had grabbed a prime opportunity by the tail.

“Hey!” he repeated as he moved to the counter. 

I tried to run interference but Marc is very kind, and he knows Aaron, and Greg is also very kind…..so Marc moved over to where he could talk to Aaron.  I laughed mentally because just a few days earlier I had seen Marc and his wife in Penny’s, where I told them about the cold sore and how Aaron is so obsessed about it, and where Marc gave me some medicine advice.

“I have this cold sore,” Aaron began, and off he went.  Funny how totally Aaron could ignore me and stay on track with his story as I stood there commenting on all of his comments.   

“Aaron, your cold sore is getting better.”

“Aaron, we’re doing what they’re saying to do.”

“Aaron, you know all about how to take care of it.”

“Aaron, Marc and Greg need to get back to work.”

And so it went, until this:

“Hey!” Aaron added.  “Have you watched XFiles?”

“Aaron!” I said.  “Don’t get started…..”

“Have you watched NINE seasons of XFiles?!” he continued. 

“Aaron, we need to go!” I repeated.  “They need to get back to work.”

“Have you seen the smoking man?” Greg asked.

“Well, now you’ve done it,” I told Greg as I laughed.  Talk about throwing gas on a flame!

We finally escaped as customers began to collect, and probably wondered why we were standing there talking about XFiles to two pharmacists.  Cold sores, maybe……but XFiles?

Aaron ate his salad and his croissants, and I put more medicine on his cold sore……but I think it’s already fallen off.  Hopefully soon the cold sore will be a distant memory.  At least with a cold sore, Aaron doesn’t have to lift his shirt up to show it to unsuspecting random people.  Now that’s a memory!!

Maybe a cold sore is a blessing in disguise after all, at least for me and for others who have been bombarded with the bare stomach shock as Aaron showed off an under-his-shirt sore.  

Life is never dull with Aaron.  I could only wish on some days……

 

 

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

A Nightmare and a Flower

3:30 a.m.  I heard Aaron stirring, then walking up the hall to the bathroom.  He closed the bathroom door with a thump because he never, ever closes doors quietly.  Soon the bathroom door opened, but instead of walking back up the hall to his room I heard our bedroom door open.

“Mom?” Aaron said in as much of a whisper as he can ever muster.  Whispering seems to be a lost art with him. 

“Mom?” he repeated.  I answered him and he continued.

“Can you come to my room?  I need to talk to you about something.”

So I followed Aaron to his bedroom, where he wanted to turn on the light so that he could talk better. 

“Mom.  I had a nightmare.  I dreamed that you and dad made me go live in a support home because I was mean.” 

So that would explain what I had heard him speaking in his sleep earlier……something about wondering if someone would come up to his room to see him.  We talked about his nightmare, as he called it.  He has such a fear of ever having to leave our home.  No matter how we approach that subject it never goes over well.  But we hadn’t talked about it at all the night before, or even at all recently, so I don’t know where the dream came from.  But it greatly bothered Aaron, enough for him to call it a nightmare. 

We talked for a few minutes and I assured him that everything was fine, and not to worry about us making him move because he was mean.  But it is important not to be mean, I had to add.  And with that I made sure he was all the way in his bed, said goodnight, and turned off his light.

He was up before 8:00.  He walked into the kitchen looking a little worse for wear.

“Mom,” he immediately said.  “I don’t feel good.  My head hurts.  I feel weak.”

I tried to encourage him, but finally he brought up the real issue of the nightmare.  He decided that this awful experience should earn him a day off from Paradigm, but he saw right away that I disagreed.  I exuded cheerful optimism, which he tired hard to override with his dreary post-nightmare pessimism.  We were in that familiar tug-of-war. 

A shower and three cups of coffee helped a little, but Aaron had decided that he was not going to Paradigm.  I always leave the final choice up to him, but he knows the consequences of not going.  I told him that we would run down to get him a haircut, which he loves, but after the haircut he was still pretty firm about staying home.

I agreed to take him home and then told him that I was running my errands.  After that, I said, I would be busy all day getting ready to leave tomorrow on an out-of-town trip for Gary and me.  By the time we pulled into our driveway, he was happier and I was on the phone.  He opened his door and in a flash, my door opened and there stood Aaron……holding something for me.

“Here, Mom!” he tried to whisper.  “I picked you this flower.  I picked it because I love you and I’m going to Paradigm.”

Then he handed me the flower, bent over to lean in the van, and gave me a HUG!!

You could have blown me away!!  Kind of like the little seed pods on the flower he gave me.  You see, his “flower” was this:

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But he was as proud of this old dandelion as he would have been if he was holding a dozen roses.  And trust me, I was too!  This bent over, half bald seeded dandelion was what Aaron saw first and so pluck it he did……for Mom!

After I got off the quick phone call, I thanked and thanked Aaron for the flower.  He just beamed.  He got his glasses and his watch and his wallet, and off we went to Paradigm.  I think his morning there was a little tricky, but the rest of the day seemed to go well. 

It’s a good thing I don’t have allergies, because I’ve kept my special flower in the kitchen all day.  It’s nothing spectacular, but it’s the best Aaron had.  It would have been understandable for me to not want this sad sample of a flower.  To maybe throw it away when Aaron wasn’t at home. 

But I keep thinking about how the best Aaron had to give me was…..well…..not what we would call great, but it was from his heart and that makes it totally awesome.  That’s so often what Aaron does and is, all through the days of his life.  We may not get exemplary behavior every day…..we may not see stellar progress on most days…..we may not even take the time to notice how hard he tries on other days.

But for Aaron, it’s there.  His attempts to fit in, to express himself, to understand this world we live in with him, are there.  Some days the best we get is for him to ask if I’m happy that he didn’t make “farting noises” with his mouth in the store, but he made “meow” noises instead.   Or that he didn’t clap SUPER loud or clap too AWFULLY many times.  Or that he didn’t get 10 toothpicks at the welcome counter at the restaurant…..only 4! 

He so wants us to be proud of him.  He so wants to conquer his inability to communicate what’s really on his mind…..what’s really bothering him……what’s in that heart of his.  But it’s just so nearly impossible sometimes for him to do that……to talk like you and I do.  He might react, like he did this morning.  He might hit or slam a door or be defiant.  But I’m convinced that part of the frustration that Aaron feels is not that he’s mad at the situation….he’s mad at how very hard it is for him to identify and express to us just what he’s mad about. 

So whatever he is able to share, we must take it gladly and try to understand.  We must grasp what he hands us and take care to handle it well.  Just like my dandelion flower.  Would I have chosen it?  No.  But Aaron did, and with it he showed me his love.  To me that gangly old dandelion is beautiful.  It represents Aaron’s heart. 

I hope that when he sees it sitting on the table, or maybe later in a vase, he’ll know that Mom not only loved his gift……he’ll know that Mom loves HIM. 

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