Fast Forward

Sometimes one thing leads to another, and that one leads to another, and then another leads to another, and it can just be amazing to go back and look at the picture created.  This is what I’m seeing today.  I hope I can connect all the “things and anothers” as I try to show you the beautiful picture created by God.

It started yesterday evening when Aaron went with me to Dillon’s.  When we left the store and were getting into the van, the handle of my crossbody purse somehow knocked off my earring as I moved it over my head.  I found the back of the earring as it poked my skin.  Yep, it had gone down my shirt somehow.  But nowhere in sight was my earring.  I hurriedly searched for it, and so did Aaron, but we couldn’t find it.  I told him not to worry, because things like this can worry him, and off we drove to pick up some pizza for supper.

Still no earring appeared as we got out of the van at home, and I searched around some more for it.  “Oh well,” I told Aaron.  “It’ll show up when we least expect it…..or when I clean the van, sometime in the far off future.” 

We sat down to eat and Aaron asked the blessing.  His before-meal prayers, 99% of the time, contain two statements.  What he says varies depending on the day and the current events of our life, but very rarely does he say more than two things.  This prayer was no exception. 

“Dear Lord,” Aaron began.  “Thank you for the pizza.  And please help us find Mom’s earring.” 

I told Aaron it was wonderful to pray about the lost earring, and assured him that God loves to hear those requests.  And don’t you know that a short time later Gary went out to the van to conduct his own search, and he found my earring!  You should have seen Aaron’s face when I showed him that I was now wearing TWO earrings!  And then when I told him that God had answered his prayer!  Aaron’s face lit up like the sun.  It was priceless!

So the lost earring led to Aaron praying, which led to God answering in a sweet way, which led to……I trust……Aaron seeing how wonderful it is to pray about everything.

It was a good thing for Gary and I to see, as well. 

Then came today, which in comparison to what some others are enduring was really nothing.  But in the moment it was, for Aaron and for me, pretty awful.

I want to preserve Aaron’s dignity in this.  I needed to take him down to the air base to have a urine test repeated this morning.  I told him to use the bathroom when he got out of bed, and then by the time he drank his coffee and we got to the lab, he would need to go again.  I rehearsed the procedure with him as we drove to the base.  All was well.

That was short lived.  As Aaron got out of the van at the clinic, I saw that he was doing what I call “The Potty Walk.”  I was concerned, but he assured me that he could wait until he was in the lab bathroom, cup in hand. 

We walked up to the lab window, where the lone lab worker was a little harried.  I heard a door close and looked around to see that Aaron had already entered the bathroom…..NO cup in hand.  I told the harried lab worker to hold on as I scurried to the bathroom and opened the door…..to find Aaron preparing to go. 

“NO, Aaron,” I tried to whisper as I closed the door.  “Please, can you just wait until I get the cup??!!”

I rushed outside, went up to the window again, where the lone lab woman was realizing my dilemma and was trying her best to get Aaron’s info sticker onto his cup…..the cup he still wasn’t holding!  She slapped it on, and I quickly zoomed into the bathroom……to the most awful sight.

Let’s just say it appeared that the plumbing had sprung a huge leak, but the toilet and sink plumbing were fine.  Aaron’s, however, was not fine.

We got the sample somehow, but it’s probably not the best.  I wasn’t the best, either.  Such a mess!  I didn’t know what to do but to try to clean it up, mostly in an effort not to embarrass Aaron by having to tell the poor harried lab woman, in front of others, what had happened.  I had Aaron standing in the corner of the bathroom and kept telling him not to talk, because he talks so loudly that I knew everyone outside would hear.  Like they didn’t already guess what was going on in that bathroom!  “How many paper towels do they need in there?” everybody must have been wondering as they heard the automatic dispenser churn out towel after towel.

And poor Aaron.  His shorts were very obviously wet, and we had to walk out past people in the lab waiting room and in other areas as we left the clinic.  I waited for a few minutes after leaving the bathroom to see if the lab worker needed anything else from us, while Aaron hid behind the bathroom door.  Finally, we just left.  I felt like it was a walk of shame for dear Aaron.  And I was a mess of emotions…..very sorry for Aaron, and embarrassed, and just weak from all of it. 

The plan had been to take Aaron to Paradigm for his day, but instead we just drove home.  I really wanted to cry.  I stole glances at Aaron.  He was very serious, and very sorry, and very quiet.  That made me want to cry even more.

He turned on his music, of course.  It was the Zac Brown Band.  As we drove along the highway, song #4 and song #5 came on, Aaron checking the back of the CD box to confirm the title of each song as he always does.  Then came song #6, which is more of a rock song, and one I don’t like.  I was in NO mood for that today, so I used the button on the steering wheel to quickly go to song #7.  Aaron didn’t seem to notice, which was good.

Oh, but never underestimate Aaron.  It wasn’t long before he realized that song #5 had played, and now song #7 was playing.  What happened to song #6?

“Mom, did you go past song #6?” he asked.  I confessed.  He asked why, and I told him, and he was fine with that. 

As we kept heading toward home, I thought of how nice it would be if we could fast forward through parts of our life.  I would certainly have fast forwarded through this bad morning!

When we got home, Aaron showered and changed clothes.  Then he went with me to Aldi and to Dillon’s, even though I kind of wanted some time alone.  But once there, Aaron and I enjoyed the shopping, especially looking for what we needed for the lasagna he wanted for supper.  He helped bag the groceries and carry them.  He carried the heavy bag of dog food I got when we stopped at the vet, and he talked to Misha about Spiderman and about Star Trek, which always cheers Aaron up.  None of that would have happened if I hadn’t taken Aaron with me. 

Then at Dillon’s, Aaron saw one of the workers that we know as we checked out.  She stopped to talk to us before we left.  Her life is hard, always full of trouble, it seems……and today was certainly no exception as she shared some things with me.  As she talked, Aaron just stood there listening quietly to every word.  As we left, I told her that I would pray for her.

“Does she have a heartache?” Aaron asked me as we walked out the door. 

I was so surprised at his question, but more at his insight and the empathy he showed as we talked together about her. 

And then later, the best part.  We sat down to a lunch of leftover pizza, and again Aaron prayed as we held hands.

“Dear Lord, thank you for the pizza.  And help B have a good heart.”

Wow.  Just wow.

Aaron usually prays for Aaron, and on a good day he might pray about my earring.  But to pray for this friend that we really don’t deeply know……now that was touching and dear and so impacting.

That would never have happened if Aaron had not been with me…..and he would not have been with me if not for the awful lab experience earlier. 

If I had been allowed to fast forward through our terrible morning in order to preserve us from that bad time, then we would not have had this amazing and very good time.  This sweet time of Aaron genuinely listening to another person share her pain, and then genuinely caring enough to genuinely ask God to help her have a good heart.

So you see, one thing does lead to another which leads to another which leads to yet another.  Did Aaron’s answered prayer last night encourage him to pray for our friend today?  I think it did.  Then his bathroom accident allowed him to be with me to offer help today, and especially to be with me to listen to a hurting friend who needs his prayers. 

We all have those times in life when we want to skip song #6 and go right on to song #7……when we want to fast forward through the pain we’re facing and be done with it, moving on to other better things. 

But with God, His one thing that leads to another thing that leads to the other thing is what’s best for us.  It’s a good thing that He doesn’t allow us to fast forward, as hard and as terrible as some of the things are that we face.  He works all of it out for good if we let Him. 

Help all of us have a good heart, Lord. 

And help us not push the fast forward button.

 

 

A Poopy But Grand Day!

In the grand scheme of things, this day of mine was really not a big deal.  However, I don’t really give a flip about grand schemes when it’s so often the little things…..and some not so little……that make one want to go somewhere far away and very quiet.  A place where there are no pooping dogs, and where 32 year old sons can go into the public restroom and not be heard from the hall as they laugh and whoop very loudly.

My day began at 3:45 A! M!  Our elderly Great Dane, Jackson, sleeps in our bedroom with me and Gary.  Not with us as in the bed with us.  NO, NO, NO!!  But he sleeps on a bed at the foot of our bed, on the floor, where big Great Danes belong.  He’s been getting me out of bed quite often lately, needing to go outside to potty, and usually it happens at about the awful hour that I awakened this morning.  But it wasn’t Jackson that woke me up.  It was an odor.  A very unhappy odor.  Not wanting to awaken Gary, and assuming that Jackson had left me his usual large gift of a turd or two on his bed, I got out of bed and didn’t turn on the light.

Big mistake.

Both of my feet soon landed in soft, gooey poop.  So there I was, in the dark, trying to walk on the sides of my feet to the bathroom where there was a LIGHT SWITCH that would help me to see what I already knew was there.  I nearly fell backwards as I tried to wobble forward, and wondered how I would explain all of this to the ER doctors as I lay on the gurney covered in poop with bones poking out of my poor broken body. 

I know that’s dramatic.  I was actually very composed…….probably in a state of near shock as I first cleaned my feet with a Clorox wipe, and then tackled the carpet.  Jackson lay on his blanket, separate from his bed.  Yes, he has a bed with a comforter on it and his favorite blanket.  And then he has yet ANOTHER blanket on the floor beside Gary.  He’s spoiled.  He watched me with a bored expression.  I glared at him but didn’t speak.  Then I made him get up and go outside to potty anyway, and I left him downstairs. 

There!!

I never went back to sleep.  Our diffuser helped dispel the odor, but my body and brain were revved up! 

I guess Aaron was revved up this morning, too, because at 6:30 he came into the bedroom where I have my quiet time and he just quietly stood there……staring……at me. 

I turned and stared back.

“Mom,” he said with no emotion.  “I woke up.”

I was still in a poopy frame of mind.  “No joke,” I replied.  But the sarcasm was totally wasted on Aaron, who doesn’t get sarcasm.  And I, having had enough of waste, just turned and continued with my reading.  He must have thought I was hopeless, because he went back to his room and shut his door. 

Today Aaron had a doctor appointment at the air base.  It was time for his physical, as well as his post-hospital visit with his primary care doctor there.  I was so prepared the night before……clothes picked out, and all of his paperwork filled out and put in a nice folder on my desk.  I was good to go!  Until it came time to actually go.  I don’t know what happens in the last five minutes before we leave.  I mean, does Aaron plan to go barefoot?!  Why are his shoes and socks not on when I told him what time we were leaving?  Then I had to quickly clean his glasses, grab my earrings, don’t forget my phone, turn off the radio, answer his multiple questions about where we would eat lunch today……and LET JACKSON OUT TO POTTY!!!!!

We were about two miles from the house before I realized that I had forgotten the carefully prepared folder with all of Aaron’s physical paperwork that I MUST have.  So I did a quick turnaround, went back to the house, up the stairs as fast as I could, and off we went again.  Aaron put his seat back and slept.  We hit every single red light on the way, I do believe, but made it just before our appointment time.  Why does Aaron walk SO slow?!   And so much for getting there 15 minutes early.  I was very thankful that it wasn’t mentioned by the receptionist. 

Aaron went to the restroom then, and as I stood at the check-in counter quite a distance from the bathroom, I heard the unmistakable sound of Aaron’s laugh……and his excited whooping yell……and several booming claps.  Not of thunder, either.  It was Aaron clapping for some reason known only to him.  I stood outside the bathroom door at that point, and when the door opened Aaron got the “evil eye” for sure from me!  He was unaffected, of course, and just followed me up the hall where we waited for our name to be called.

And where he almost……almost……got off another loud clap.  But I intercepted it, and hissed out a stern warning to him about NOT clapping!!  And NOT making such noises in the public restroom!!

“You’re a grouch today,” was Aaron’s response.

“No joke,” I wanted to say but didn’t.  Why waste my breath. 

There’s that word again!!!

Aaron’s name was called at last, so we followed the medic into the hallway.  Aaron knows the routine, so he stopped at the scales…..took off his shoes…..and was weighed.  Then to the exam room, where he sat Indian style on the exam table but soon was stretched out comfortably after his vitals were taken.  No sense wasting a good place to lay down! 

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Did I really say wasting?

It was then that I noticed the large coffee stain on his shorts…..and another stain…..and some spots on his shirt.  So much for trying to be nice and clean to see the doctor!  Exam done, papers filled out, TB test read, and assurances made that he did not have to pee in a cup again today – and we were done!!

Put a little gas in the van, make our way through multiple construction zones, back to our side of town, and finally we were at Aaron’s favorite place – Carlos O’Kelly’s!  We sat down in our booth and our server was there.  And immediately Aaron said…..loudly, of course – “Can I have a regular salad?!”  It happens every time, and every time we tell Aaron to wait until we actually order food to order his salad, but he just MUST be sure that the server knows that if all else fails……if there is no other food…..no water…..if the table collapses……if the walls crumble…..CAN I HAVE A REGULAR SALAD??!!

We finished our grand day at Wal-Mart, which is the grandest of the grand in Aaron’s book.  He went to the electronics, of course, where he saw more movies that he wants and a computer mouse and headphones……

And in our cart were other things he saw and knew he could have…..CheezIts…..flavored water……and some beef jerky for Dad!  All picked out by Aaron, who was very happy.

And very tired.  He told me that he would sit on the bench and wait for me, but I saw this sight as I left the register after paying. 

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He surely doesn’t mind being comfortable wherever he may be.  Doesn’t faze him one bit to lay down in front of everybody at Wal-Mart, or make noises in the bathroom, or talk loudly for all to hear, or any number of other things that sometimes makes Mom grumpy on a bad day. 

But Aaron isn’t trying to make me have a bad day.  He’s just being Aaron. 

Kind of like Jackson was just being Jackson, doing what a dog needs to do when a dog needs to do it.  I may as well not waste my breath fussing about any of it.

I said it again, didn’t I? 

Kind of like Aaron, don’t you think?

 

 

 

 

The Introduction

Sharing stories about Aaron is a good way to have insight into how Asperger’s Syndrome affects not only him, but all those who live and work with Aaron.  A key to surviving life with Aaron is to understand what makes him tick.  Then you can better function yourself, and not live in constant frustration or bewilderment.  Training and directing him is also accomplished with better results when you can get inside his head and realize just how and when to redirect, or when to wait it out. 

But then there are those times when you have no idea what is going on inside that head of Aaron’s until it’s out there for all the world to see and hear.

That scenario happens often with Aaron and us. 

We moved to Wichita (Goddard), Kansas in 1999 when Gary retired from the military and accepted a job here.  A couple years later we enrolled Aaron in a school here that offers training to high functioning special needs students.  This training prepares them, hopefully, for the job market upon graduation.  There were many great aspects of this school and its program, but it never was a good fit for Aaron.  

I’ll never forget the open house and parent night during Aaron’s first year.  The students were to accompany their parents into each of their classrooms and introduce us to their teachers.  The students were treated as adults and so were to address each teacher by their first name.  The evening was going very well and Aaron was doing a great job.  It was nice to meet each teacher and to see his new environment that he was to be a part of now. 

The evening was winding down and we had one more teacher to meet.  As we stood in the hallway, waiting for the family ahead of us to come out of the room, Aaron was beside himself with excitement.  When he’s excited he bends over and rubs his hands together, over and over.  He hadn’t acted this way with any of the other teachers and so we were perplexed at this behavior.  We tried to get him to calm down but to no avail.

Finally, the room was empty and we walked inside.  There stood his teacher, with a very pronounced spiked haircut.  Remember how Aaron is attracted to the unusual?  Well, Aaron thought that her hair was just that……very unusual.  Of course, Aaron had not shared anything with us about her hair.  If he had, then perhaps we could have averted what happened next.  

Aaron quickly walked over to her, rubbing his hands together, and said, “Mom and Dad, this is Cindy (name changed).  She looks like a hedgehog, doesn’t she?!”  

Oh.  My.  Goodness.  Time stood still.  We were horrified.  Aaron was delighted.  Cindy was unhappy.

I’m surprised that I’m still living, as many times as Aaron has caused my heart to nearly stop. 

Her reaction told us that things would not be easy for Aaron in this school.   I’ll just say that it was a very long two years. 

But Aaron did LOVE that haircut! 

For the whole two years.

Trust me.

The Bedroom

Aaron went to the Goddard Day School for three years, graduating from there at the age of 21.  His teacher, Tom, was just wonderful with Aaron and with all the students.  Tom would have one-on-one time with each student.  He would fix tea, sit with each one, and just talk and connect.  Tom called that time Tea with Tom.

When Aaron was a senior and ready to graduate, he was allowed to quit going to school earlier than those students who weren’t seniors.  Tom was still teaching, so one day he contacted me and asked if he could have one more Tea with Tom time with Aaron.  He said he would come to our house, so we agreed on a day for Tom to come. 

On the morning Tom was to arrive, I had things ready for our Tea with Tom.  Tom wanted me to join him and Aaron.  Gary was at work, even though he had a bad cold, and couldn’t be there for our tea time.  That little detail about Gary having a cold is important.

So is the fact that off our kitchen, down a couple little steps, is a guest bedroom.  And a small bathroom.  Because of Gary’s bad cold which made him cough all night, he had been sleeping in that guest bedroom.  This is another important detail to know. 

Tom, Aaron, and I were enjoying our tea as we sat at the kitchen table.   Aaron was full of non-stop talking, as always, and Tom was his usual patient self. 

Tom turned to me at one point and asked if he could use our bathroom.  I pointed him in the direction of the small bathroom.  As he headed that way, he saw the bedroom and for some reason he commented about it.

“I didn’t know you had a bedroom there,” Tom innocently said.

And before I could even reply, Aaron answered.

“Yeah,” he flatly replied to Tom.  “That’s where my Dad sleeps.  He doesn’t sleep with my Mom anymore.”

Well.

There it was, on the table……like a family secret thrown out there for Tom to know.

I was horrified.  Mortified. 

I looked at Tom, my face flaming at this point.  But Tom had turned and was heading for the bathroom.

“It’s not that way,” I somehow managed to say.

“You don’t have to say a thing,” Tom answered.

“YES, I DO!!!!” I blurted out.

So I explained Gary’s cold…..and his coughing……and his thoughtfulness in sleeping in the guest bedroom so as not to bother me……and that he and I were fine. 

Why was I having this conversation with a man??!!

And Aaron, as usual, was oblivious to my embarrassment and to Tom’s discomfort with the direction this conversation had taken. 

When Tom returned, our Tea with Tom resumed.  We chuckled and nothing else was said about this family secret, at least not that I remember.

Some things are best forgotten. 

Some things still make us laugh, years later. 

And Aaron…..nothing much escapes his notice. 

And he will tell it…..sometimes yell it. 

Every.  Single.  Time.

 

The Nightgown

While we’re on the subject of night wear, before I put it to bed, I have another Aaron story to relate.  I’m trying to determine the purpose of sharing this.  I strive, with my blogs, to educate…..encourage…..enlighten…..entertain.  And with this blog, I must say, embarrass.  Myself.  Embarrass myself.

Actually, it was Aaron’s fault.  He did the embarrassing…..as usual.  It’s up to me to do the telling, which can also be embarrassing.

OK, I’ve established that fact.

On the particular night of this story, Aaron and I had gone through his extensive bedtime routine.  Blinds closed…..next day’s clothes laid out……glasses and watch put in their exact place…..shoes side by side in front of his trash can……clock turned so the light is hidden…..backscratcher and hand towel on his chair……stuffed animals in his bed……multiple blankets pulled up just right……pillow perfectly placed……and every wrinkle smoothed out of his covers.  Every.  Single.  Wrinkle.

I answered all his questions about whether it was going to rain and would I have the baby monitor on and what the temperature was outside.  A hug, a goodnight and I love you, and I was done. 

A short time later, I had my nightgown on and was almost in bed when I heard Aaron call me from his room.  I knew better than to ignore him.  If I ignored him, I would soon hear him thumping up the hall and he would bound into our bedroom and tell me whatever it is he wanted to tell me.  Therefore, I walked down the hall in my normal…..and might I add, modest……nightgown.  I went into Aaron’s room, where he had turned on his lamp, and I listened to whatever it was he wanted to tell me.  I don’t even remember what it was, but it could very well have had to do with aliens or something genetically modified, knowing Aaron.

It only took a minute, max, but it was long enough for Aaron to make an observation.

Fast forward to the next afternoon when he was home from his day group.  He was filling me in on what he had done that day; what he had eaten; and whatever conversations he thought were interesting. 

“Mom,” he finally said.  “I told everyone that last night you came in my bedroom in your underwear.”

I try not to overreact with Aaron.  Too much emotion or reaction can upset him, or anger him, or excite him.  So as calmly as I could, I said……

“WHAT????!!!!!!”

 I proceeded to explain that what I wore last night was a normal, MODEST, nightgown……NOT underwear, for crying out loud.

Aaron was the one who stayed calm.

“Oh,” he said, totally unaffected by my reaction.  “I thought it was your underwear.”  And off he walked, with not a care in the world.  But I cared!!

I spent the rest of the evening wondering what the staff at Paradigm thought about Aaron’s brazen mother.  I told Aaron the next day to be sure and tell everyone what his mother was REALLY wearing.  And as time went on, it became a funny story that his staff and I laughed at many times. 

I’m sure they never thought for a second that I would do such a thing. 

Right?

 

 

Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning. 

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Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not.  It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times.  To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store.  I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart.  Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash.  If you lived with him awhile, you would see that those items are not a priority or an interest of his.  Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby.  You would think that this was the first time he had ever seen this gentle spray, but it isn’t.  It’s probably the 753rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time. 

I turned and headed for the registers after deciding against any cantaloupes.  I knew that Aaron was lagging behind.  I was already in the florist section when I turned to look for Aaron.  There he stood, large and loud Aaron, holding up an artichoke.  His face was just a huge smile as he held his prize up for me to see.  I had to smile, too, standing there among the sunflowers and daisies.  What is it about artichokes that always, always grabs Aaron’s attention?  We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered. 

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to.  I could see them making the connection……wondering, I’m sure, about Aaron. 

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age. 

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

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Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

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Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

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Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk. 

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Noticing after he got his teeth cleaned that the digital clock on the counter was flashing.  “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock.  Incorrect time is intolerable!

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Recovering from three strong night seizures.  We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans.  I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks.  He was happy.  I was happy.

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And finally, sunflowers.  Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden.  He has watched them grow and grow and grow, until now they are much taller than he is.  Now he can’t wait for them to bloom.  He was looking at the sunflowers one day when they were much smaller.  “When are they supposed to be the size they’re supposed to be?” he asked.

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I smile at the way he phrases things.  His unique way of expressing himself is a big reason I started this blog.  I can remember wondering, when Aaron was much younger, how he would turn out.  In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording. 

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be.  Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke.  Yet Aaron is who he is supposed to be because he is who God created him to be. 

But God gives grace when we need it the most.  He really does.  I don’t think I even realize sometimes in just what forms His grace comes to me.  Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us. 

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect.  Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom.  Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes. 

I pretty well know, too, what Aaron would say if he looked at this sunflower picture.  “What?!” he would probably say.  “That sunflower is wearing shades!!”

Better to see you with, Aaron.  Better to see you with. 

 

 

 

 

The Wonder of Me…..And Aaron…..And Lots of Things

I went to pick Aaron up at his day group on Thursday afternoon. I waited in the van for a couple minutes, then saw Barb coming toward me. I knew before I really knew that this probably wasn’t going to be good news. I was right. She told me that Aaron was inside after having a very rough afternoon and that he was refusing to come outside. I went in and we found Aaron laying on one of the couches, crying and very upset. After some time, and moving to a new couch where he laid down again, he told the story of how he had acted……which often starts with him thinking he’s teasing but turns ugly pretty quickly. One thing led to another and the situation became something it never needed to be.

How we wish that Aaron understood that his idea of teasing is often anything but. How we wish he could control himself when he is being redirected. All the talking and lectures and therapy in the world doesn’t seem to sink in. Maybe a little, but not as much as needed. He just doesn’t connect actions and repercussions like you and I do. Reading about the autistic brain……writing about the autistic brain…….saying that I understand the autistic brain as much as I can…….often doesn’t mean as much as it should when I’m staring at my belligerent son, hearing of his actions and trying to control my own embarrassment and anger.

Aaron is often immensely funny, but Aaron is also sometimes immensely frustrating. Thursday fell into the last category.

Aaron is seeing a family therapist every two weeks. This is a new thing for him. I had high hopes that as much as he loves to talk, he would really take to this and love talking to her. It hasn’t quite worked out that way. If she just let him talk about his things, like aliens and movies and games and eating out, then he would probably look forward to it. But he realizes that she wants to talk about his issues……how he’s doing at Paradigm and at home with relationships and anger and attitudes. To Aaron, this is uncomfortable and a waste of time, so he hasn’t been enjoying their sessions like I had hoped.

This past Tuesday she gave him a paper on which she had drawn a large stoplight. The green light means that he is doing good, so keep going. The yellow light means that he is starting to feel some frustration, so he needs to be cautious. The red light means that he is having a meltdown full of anger. At the end of the day, he is to mark what kind of day he has had…..green, yellow, or red.

Aaron didn’t want to take the paper home from her office. Then he told me several times that he thought the paper was stupid. I left it alone on Tuesday night, but on Wednesday night I told him before bed that it was time to mark his stop light with what kind of day he had. I felt like Wednesday had been a green day, so I thought he would be happy to mark the green light. But when I told him to get his paper and mark it, he crossed his arms and told me that he had hidden the paper.

Oh boy.

After some talking, he finally got down on his hands and knees, and pulled the paper out from under his bed. He rolled his eyes as he put a mark on the green light, the mark I thought would make him happy. Then he picked up the paper and as we stood there talking before saying good night, he crumpled that paper some in his hand. He was simmering, I knew it.

So after his meltdown Thursday at Paradigm, and a rather rough evening at home during Skip-Bo as I tried to talk to him, he went upstairs at my direction and brought down the stop light paper so that he could mark it. I knew that he needed to put a mark on the red light, and he knew that, too.

He came down to the kitchen table with his paper, and this was what he laid on the table.

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Well, so much for that idea. How many times I say that when we try something new with Aaron!

So often it’s back to square one with Aaron. We rarely feel like we pass go and collect our $200.00. I know there are times in his life when he needs to pull back and reboot, so on Friday I let him stay at home. He went grocery shopping with me, helping me at the store and helping me carry in the groceries at home. We went to see Jungle Book, run more errands, and get him a sub for supper. We watched a little TV in the evening. It was a pleasant, fun day for both of us.

Aaron found an Elvis CD that he wanted when we were shopping together at the first of the week. He’s been completely fascinated with the songs and with Elvis all week as we’ve listened to the CD while driving. He’s been hilarious with some of the things that he has said about Elvis, like how his voice is “jiggly” and his dancing is “rowdy.”

So on Thursday, meltdown day, Aaron turned on the Elvis CD in the van. The second song that played just left me pretty stunned and with a huge lump in my throat. “The Wonder of You.” Look at the lyrics for the first part of this song:

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

Aaron has decided that he loves this song. It’s uncanny. This song that speaks volumes to me about what kind of mother I need to be with Aaron has become a very special song to him as well. It’s not for the reasons that it’s meaningful to me, either, because I’ve had him tell me why he likes it so much. But he’s played it over and over since Thursday. We even listened to it with Gary at supper last night.

I really do want to be this kind of mother in Aaron’s life. Sometimes he’s certainly hard to understand and he does a lot wrong, but I pray that I will give him hope and consolation, strength and a helping hand.

Honestly, many times, I don’t feel like I’m a wonder. I feel more like I’m left wondering…..wondering what to do, wondering what’s going on, wondering how I can stay calm…..

I could go on for a long time about some of the ways that I wonder.

But Aaron needs me to be there for him despite the wondering and the frustrations, the tiredness and the seeming dead ends that we end up taking. He’s taking a nap right now and just had a seizure. He needs me physically, too.

But he needs me the most when, like the first part of the song says, no one else understands him and everything he does is wrong. I know he’s frustrated by those times more than we are.

All moms can relate to what I am saying, and especially moms of special needs kids and adults understand it all too well.

Aaron will probably never look at me and say, “Wow, Mom! You’ve meant so much to me. You’re a wonder!”

Just reading that makes me laugh. I’d faint if he said that and probably get hurt, so it’s just as well that he doesn’t say it, right?

But I will keep striving to BE that in Aaron’s life…..pick him up, understand as best I can, hold his hand (figuratively speaking, because he doesn’t hold hands much ), and give him strength and consolation.

But trust me, I know me, and I know that at the end of some of our days I’ll still be saying, “Yes, I’m a wonder! I’m a-wondering how on earth we both made it to the end of this day alive and in one piece!!”

And tomorrow’s a new day!