Category: http://schemas.google.com/blogger/2008/kind#post

Lights On. Lights Off.

There is something laying on the floor of our garage right now.  It’s a baggie that contains some coins….some coins that Aaron needed to take to his day group today.  The bag is on the floor of the garage because Aaron put it there.  Well, he didn’t just put it there.  He threw the bag down on the floor.  He threw the bag down on the floor because he was angry.  He was angry because he didn’t want to go to Paradigm today.  He didn’t want to go to Paradigm today because of something that happened there on Friday.  He didn’t have to go yesterday because of a doctor appointment and then a fun day with me…..so he doesn’t want to go today, either.  Are you following me?

It’s how we have to follow Aaron.  Living with Aaron means living with autism, and living with autism means that we often follow Aaron as he goes down one trail, switches to another, and back tracks to the first one, but is soon off on a wild tangent, and off we go.  Living with Aaron and living with autism means that we must understand, as best we can, the things that Aaron can’t easily or sometimes ever express.  At times it’s a fascinating journey.  At times it’s a funny journey.  And at other times, it’s a very frustrating journey.  It’s really wild when all those emotions are mixed up into one ball.  Boy, can we bounce from one to the other!

Anyway, back to the bag of coins on our garage floor.  Aaron was awake a little after 5:00 this morning.  I heard him go to the bathroom, but he never went back to sleep.  He was in the kitchen watching me scramble Gary’s eggs well before 6:00.  He ate some sausage and I took his coffee to his room.  He came several times and stood behind my chair as I had my morning quiet time, sometimes talking and sometimes just staring.  He showered and took his pills.  And just under the current of his swirling mind, I knew what was there.  He didn’t want to go to Paradigm.  But when he saw that I was really going forward with our morning routine, like cleaning his glasses and handing him his wallet, he was not happy anymore.  On the way to the van, he turned and threw the bag of coins on the floor.  He left them there as we got into the van, and I am leaving them there for him to pick up when he comes home.  But he went to Paradigm, was met by the manager who rubbed his back and calmed him down (I hope), and hopefully will come home with happy stories.  And he will pick up the bag in the garage, because he needs to do that.  It’s a small lesson, but a lesson regardless.
 

Sometimes we don’t necessarily understand what makes Aaron do certain things, but we know that these actions are set in stone.  We are fighting a losing battle to try to change them.  Like his sausage this morning.  Aaron got his own silverware because he knew that Mom wouldn’t do it correctly.  I knew what he was thinking as he reached into the drawer and pulled out his fork but also a knife and a spoon.  Who needs a spoon for eating sausage?  Aaron does.  There’s no need to make a big deal about it or try to make him put it back.  Why make it an issue?

And the family room lights.  I don’t turn them on in the morning because we’re not sitting in there and so we don’t need the lights on, right?  But every time Aaron walks through that room, headed for the kitchen, he flips the lights on.  I flip them off at the first opportunity.  He flips them back on.  Lights on.  Lights off.

This morning he walked into the kitchen.  Lights on.

I soon took his coffee upstairs.  Lights off.

He followed behind me.  Lights on.

I came back downstairs.  Lights off.

He came behind me again.  Lights on.

I carried my own things upstairs.  Lights off.

He finished taking his pills and then came upstairs.  Lights on.

Sigh.

On the days that he is home and wants to eat lunch, he will eat only if it’s 12:00 or shortly after.  He will not eat at any time before 12:00.  Not 11:48.  Not 11:55.  Not even 11:59!!!!  And if I ask him what time he wants to eat, he replies, “At the time for lunch!”  As if Mom is a little thick headed, you know.

One day recently he said, “Mom, I’m sleepy.  I think I’ll take a nap at 12:00.”

I said, mistakenly, “Well, it’s almost 12:00 now.  You could go ahead and lay down.”

“But it’s 11:53!!!” he exclaimed.  “It’s not 12:00!”

Well, of course.  Whatever was I thinking?!

Wheel of Fortune is another one.  It starts at 6:30, so Aaron has decided that he will turn the television on at 6:28.  Again, not at 6:25 or 6:26 or even 6:27.  No.  Only….ONLY……6:28.  He will stand in front of the TV, literally staring at the clock, until it is SIX…TWENTY…..EIGHT!!!! 

It actually makes Gary and me smile. 

Movie credits.  Oh yes, movie credits.  When Aaron watches a movie in his room, he watches the entire movie.  But to Aaron, the entire movie means from the moment the DVD begins until the moment the DVD is over…..completely over.  That means watching the credits…..every single bit of the credits, until there are no more credits to watch.  He stares at them intently, too. 

 
So yesterday, after Aaron’s doctor appointment and after eating lunch at Abuelo’s, we went to see San Andreas.  He saw it at the theater on Friday, but he really wanted to see it with me.  Yesterday worked out perfectly for that.  For one reason, the theater wasn’t full at all and so I wasn’t as stressed about Aaron’s noises and rubbing his hands together when he got excited.  And this is a VERY exciting movie.  We had a good time, and when the movie was over I could tell that Aaron didn’t want to get up.  Why? 

Really?  Surely you know.  The credits!!  Aaron would have gotten up if I had insisted, but I knew that watching San Andreas in the way that mattered to Aaron meant watching it to the bitter end…..which meant to the very long, last credit.  Everyone had left the theater, and the cleaning crew stood in the back waiting on us to be finished, but Aaron and I did it.  We watched every single line of every single credit for every single miniscule part of San Andreas.  Aaron put his hands on the back of the seat in front of him, enthralled at getting to watch big screen credits all the way to the end.

 
 
This is what we often do as parents of Aaron, and as we live with autism.  I entered Aaron’s world at that moment.  It was actually funny and endearing.  We left the theater laughing, and I laughed even more when Aaron bent over as he rubbed his hands together furiously, asking the ticket taker why San Andreas was “fictinous,” as Aaron says.  The stiff, unsmiling ticket taker was rather put out at this odd situation and made some curt comment, which totally didn’t faze Aaron.  That poor guy missed out on a wonderful opportunity.

I’m learning more and more to enjoy those opportunities to enter Aaron’s mind and to follow him on his paths. I am blessed to partake of Aaron’s world on most days, but there are many times when it’s hard and frustrating.  Which brings me back to the bag on the garage floor.  Hopefully, as he picks the bag up off the floor, Aaron will talk to me about what was really bothering him.  Hopefully, he will learn that he needs to correct his own wrong actions.  Until the next time he takes off down that trail of frustration, but we’ll deal with that as well.

Lights on.

Lights off.

 

 

The Pieces of a Beautiful Life

Two weeks ago, Gary and I were finishing the last leg of our drive to West Virginia as we traveled home for my mother’s funeral.  Has it just been barely over two weeks ago that she breathed her last breath?  So much has been packed into this short time that it seems like she left us much longer ago.  That’s how my mother lived her life, though.  Like my brother said at her funeral, Mom squeezed every bit of opportunity out of each day that she lived.  So much was packed into her life…..so much that will impact so many for eternity.
As Bob and Jan, and John and Jeanie, planned Mom’s funeral, they incorporated two very sweet and personal elements into the service.  Jeanie asked each of the grandchildren to write down their memories of their grandmother.  At her funeral, Jimmy read every word that had been written.  It was a very moving and sometimes humorous part of the service.  Then Jan asked each of us to bring our quilts that Mom had made us.  Each hand stitched quilt that we brought was hung over the railings at the front of the church, adding a beautiful background as we remembered our mother.
 
Something really stood out to me as I listened to the grandchildren’s memories being read.  It’s the same thing that I noticed during her visitation at the funeral home the night before her funeral.  That night, we stood in line for nearly three hours as person after person hugged us and told us of what our mother had meant to them.  Most of their stories were fairly simple.  It wasn’t that Mom had done earth shattering acts of great note.  She wasn’t interviewed by the newspapers, seen on television, or given big awards for her acts of kindness.
So what did people talk to us about as they shared my mother’s impact on their lives?  It was her service to them, her love, expressed in so many ways.  It was meals she cooked, her home she opened to so many, stockings she knitted, clothes she sewed, miniature roses she delivered in Cracker Barrel syrup bottles, boiled custard that she cooked because a friend loved it, sending out missionary prayer letters, making dozens of quilts for others, and so much more.
It was her great sense of humor….her ability to lighten any situation with an attitude of light heartedness that was often amazing.  It was her word fitly spoken to so many, especially to those who had messed up and made poor decisions.  She comforted without judging, and extended help where others might have looked the other way.  Story after story we have heard since Mom died.  What a balm to our hurting hearts!
The grandchildren’s memories were more of the same, on a more personal level.  Again, what is striking is that no one mentioned my mother’s education or her job.  Not that this isn’t important, because it certainly was a great accomplishment for her to have a Master’s degree and to have a supervisory position with the State Board of Education.  Yet with all of her educational goals that she met and with her very responsible job, my mother maintained our home and our family in an incredible way.
It was, again, the seemingly small acts that all the grandchildren remembered the most.  Guess what was mentioned most often by her grandchildren?  It was the Cheerios that she kept in the coffee table drawer in the living room.  So many of them talked about that memory and of how much fun it was to go to their house, pull out that drawer as a little child, and eat as many Cheerios as they wanted.  Other memories were of the toys, the laughter, sitting on the front porch, all the play time in the yard, her cooking, gardening, sewing, and her unconditional love.  It was how she filled her home with joy and filled their lives with personal touches for each grandchild.
In her memories of her grandmother, Andrea wrote, “I remember how she patiently showed me how she pinned her fabric together in preparation to sew her gorgeous quilts by hand.”  As I sat in the church during mother’s funeral service, I looked at the quilts that we had hung on those railings.  Each one is full of hundreds of fabric pieces, placed together in ways that make a gorgeous design.  When you step back and look at the finished project, you see how each piece combines to make a perfectly beautiful work of art.
So it is with the life that Mom lived.  Each act of love that was remembered and many that have been forgotten, have all fit together to produce a beautiful life.  It’s the handiwork of God in our mother’s life that has blessed and profited so many of us over the 88 years that she lived.  Her life was a pattern that I want to follow.  A pattern of service and kindness that means more to people that any public acclaim ever will or could produce.
Like she so often sang:
          I’d rather have Jesus than men’s applause.
          I’d rather be faithful to His dear cause.
          I’d rather have Jesus than world wide things
          I’d rather be true to His holy name.
 
I’ll be learning lessons from the design of my mother’s life for the rest of mine, I’m sure.

Spilled Water

Today Aaron had a dentist appointment to have his teeth cleaned.  He was happy about it, not because he likes having his teeth cleaned but because he knows that afterwards it means we hit the Pizza Hut buffet down the road from the dentist’s office.  Aaron and I happily walked into Pizza Hut, only to find one very busy server working hard to keep up with a rapidly filling restaurant.

We waited a long time while this poor overworked server was on the phone before she was able to break free.  She told us just to go ahead and pick a seat, but asked us first what we would like to drink.  Aaron quickly told her that he wanted water WITH lemon…..because Holly, who had just taken care of him during our trip to Houston, put lemon in her water. 

“Mom!” Aaron had said to me earlier this morning.  “Do you know what Holly puts in her water?”  Then he proceeded to tell me how Holly put lemon in her water.  “Can I put lemon in my water when we eat at Pizza Hut?” he asked.  And I told him that he could.

So when the busy server asked for our drink order before we seated ourselves, Aaron jumped on it and made sure that his water would have a piece of lemon.  When we sat down, and our waters came, Aaron said, “Holly squished her lemon and poured the juice out.  Will you do that to mine?”  So I squished his lemon and he watched me pour the lemon juice out into his water.  He was happy.

We walked over to the buffet line, where the salad in the large bowl at the salad bar was nearly gone, and there was no pizza left on the pizza side.  Poor busy server!  We were able to fix small salads…..Aaron’s with way too much dressing before I could wrangle the dressing ladle from him.  Soon we were able to get some pizza, too, and we sat there eating and chatting.

I looked up at one point to see that five Amish young women had come in and were waiting to be seated.  With them they had two small children.  They were such refreshing and lovely young women, I thought.  I watched as others stared at them, and I hoped I wasn’t doing the same.  It must be hard sometimes to always stand out as being different.  Finally they were shown to the seats right behind Aaron and me.  I pretty well knew what would happen when they walked past us. 

“Mom,” Aaron said.  “They have on hats.” 

“Yes,” I answered.  “That’s part of their religious beliefs.  And don’t stare or point.”

“I was watching her,” he continued.  “You’d say I was staring?”

Again I just cautioned Aaron not to boldly stare, so he continued eating.  Finally, we got up for one more trip to the buffet, and as Aaron was getting out of his side of the booth his arm knocked over his nearly full glass of water.  His water with all the squished out lemon juice went all over the table and down onto my side of the booth.  Thankfully I had already stood up, so I didn’t get wet.
 

Aaron apologized profusely, so I told him it was fine…..and told him not to be so loud…..and he reached his arm up to me.  I leaned down as he still sat there and he gave me a big hug.  The older man in the booth beside us stared even more than he had already been staring.  And as I turned to see what kind of mess we had, I made eye contact with one of the young Amish women.  She looked quickly away, but I knew she was watching us and probably wondering.  I knew that I felt the way she must often feel.

For the rest of our meal, I sat with Aaron on his dry side of the booth.  Our poor harried server never did make it over to clean up the mess, and that was fine.  I felt really sorry for her.  Besides, this gave Aaron and me a chance to sit close together.  He leaned his head on my shoulder, so happy that Mom wasn’t angry and that all was well.  I knew he felt so badly about what had happened, but I assured him that it was fine. 

He was very happy that I offered him my water, but I took my straw out so he wouldn’t get my cold.  He quickly grabbed his straw that was laying on the table in the mess of spilled water, ice, and soggy napkins.  He was content as he ate his pizza, not minding that the server never made it over to clean our table.  While he ate, he sang songs from Phantom of the Opera…..quietly……and he drank every drop of my water.

 
I was now facing the Amish women as I sat beside Aaron.  One of the young women that was facing me was pregnant.  I looked up at one point and our eyes met, and we both smiled at each other.  I wondered what she was thinking.  I wondered if she wondered about Aaron.  Wondered if she wondered what my life is like, just the way I wonder what her life is like. 

Aaron and I finally went up to the register to pay.  I had to run after Aaron at one point because he walked rapidly over to the buffet.  He was just ready to reach in with his bare fingers and grab some bread sticks for the road before I was able to stop him.  Oh Aaron!  You know better! 

Aaron and his messes that he makes!  In the short time that we’ve been home from Houston, we’ve had several of those messes to deal with and try to correct.  They may be physical……like me on my knees cleaning up certain spills and missed aims, if you know what I mean.  Or they may be messes created by his behaviors.

That’s why I was on the phone this morning with Bryan, one of the Paradigm staff that takes Aaron with him to work on houses.  Aaron loves working with Bryan, but on Monday Aaron had a meltdown at Paradigm and was mean to Bryan.  I wondered what Bryan would say when we talked, but he was amazing.  He really loves Aaron.   He really understands Aaron, as much as any of us can understand him.  And he knows that all he can do…..all any of us can do…..is clean up the mess and move forward.

Sometimes we have to sit in the mess awhile, like Aaron and I today in our watered down booth.  Sometimes there are no quick fixes or easy solutions.  Aaron sees the mess and the havoc it creates, but it’s important for him to know that he is still loved in the midst of it.  He is still cared for despite it all.  He felt bad about the water today, and he usually feels badly about the outbursts he has.  Yet he can’t always stop it when he’s upset, any more than he could stop the water that spilled so suddenly today. 

The damage is done, but I can still sit closely enough for him to put his head on my shoulder, and know that he is forgiven and loved.    Believe me, sometimes I want to run to another room….another house….another state!  But that’s not the solution, for Aaron or for me. 

We stay in it because we are all Aaron has.  God gave him to us for a reason, messes and all.  And we do love that big, crazy guy. 

Spilled water and all.

The Slow Train

Imagine that every day when you drive away from your home to run errands or to go to work, you must cross a train track.  Imagine that every single time you come to that train track, there is a train on it, traveling ever so slowly.  You must wait on that train to pass before you can cross the track and continue on your way.  Then when you drive home later, the same thing happens.  Any time you try to cross that train track, no matter the time of day or how many times you have to drive over that track in a day, the same thing happens.  Over and over again, you must stop and wait on that train to slowly pass.  You begin to dread it and you find yourself very irritated about this slow moving train.  Some days you handle it better than others, but eventually on a bad day, you find yourself saying, “I hate that train!!” 

 
This is how I sometimes feel about autism.  Not Aaron, mind you…..but autism itself.  I love Aaron so much.  I love how unique he is…..how he views the world while opening up his view to me……all the many, many lessons he has taught me over the years as I have lived with him….all the times that he has made me laugh at the funny things he says. 

But some days it’s like running into that slow train every day.  On those days, if I’m tired or troubled, it can be especially difficult to remain upbeat or to see the fun in Aaron’s way of living in his world.  That’s because his way of living in his world usually involves me to some degree, and often that involvement causes me to stop what I’m doing and do what he wants…..or demands.  Just like that slow train that impedes my day, at times Aaron’s rigid routine makes me stop what I am doing while I meet his needs.

For instance, his bedtime routine at night.  At night, when I am more tired.  He absolutely does not want to go to his room to get things situated unless I go with him.  He wants me to help get his blanket on the bed just right, close his blinds, set his clothes out for the next day, and say goodnight in his room near his door…..not out in the hall or on the right side of his bed, but in his room near his door on the left side of the bed. 

If I am on the computer he will come to stand behind me and he will hover.  He is waiting for me to come up to his room for the bedtime ritual.  If I tell him to go on and brush his teeth and take his pills, he will do that and then return to stand behind me and hover some more.  I just know that he will not go to bed unless I stop what I am doing and go with him.  There’s that slow train, every day the same.

Or getting his coffee in the mornings.  When Aaron comes down to the kitchen, he wants his coffee.  I don’t mind that at all, unless he’s demanding.  But he will linger as he waits for the coffee to finish perking, if I’m making fresh, and he will linger as he waits for me to pour the coffee.  And he really wants me to carry it upstairs right away.  The other morning he was hovering, wanting me to pour his coffee.  I poured his cups of coffee and went back to what I was doing.  I always carry his coffee up to his room because he is so shaky that he spills it.  So he stood there, hovering, waiting for me to carry his coffee upstairs. 

“Are you carrying my coffee to my room?” he asked.  I told him that I would get it in a minute.  He walked in the living room, but soon was back in the kitchen…..hovering again. 

“Are you getting my coffee?” he asked again.  So I told him to go on upstairs and take his shower, and I would bring his coffee up while he showered.  This didn’t suit him at all. 

“Mom!” he said with impatience.  “Aren’t you getting my coffee?”  He started walking away, but I knew we weren’t done….and I knew I would need to carry his coffee upstairs now.

This made me very irritated on this particular morning.  I rinsed my soapy hands off under the running water at the sink.  And thinking he couldn’t hear me, I muttered, “I hate autism!”

But Aaron did hear me.  He heard my careless remark, and he did not like it…..not one bit.  Since that morning I have had to do some damage control.  I’ve explained to Aaron several times what I meant when I said those words, assuring him that I did not mean that I hate him.  I reminded him that Granddaddy died of cancer, and that I hate cancer.  I told him that Grandmother has Alzheimer’s and that I hate Alzheimer’s.  I’ve explained that I hate his seizures.

Explaining to him why I sometimes hate his autism has been a little trickier.  I’ve talked to Aaron about how sometimes life for him is very stressful because of his autism and how it makes some situations difficult for him to handle.  Aaron really doesn’t want to go into great detail about those things, though.  And I don’t either, because I don’t want him to feel that I think his life is bad or hard.  I wish I could take back that moment, and that I hadn’t said those words in my frustration.  Yet on the other hand, at least it’s opened up some conversation between us and enabled me to talk openly to him in a way I don’t normally do. 

Aaron and I were watching a movie on Saturday night, one that he had looked forward to watching with me.  Suddenly he turned to me and said that he was having a dream, and then went into a big seizure.  Gary and I stayed with him, and when he was able we went upstairs to his room so he could go to bed.  The movie would wait until another night.  I got his bed covers all ready while he brushed his teeth.  His head was hurting from the seizure, and he was slow and weak.

Despite how he felt, though, he went about his bedtime routine as he normally does.  I watched him carefully place his stuffed snake and skunk in the bed, under the covers, just right…..and then pull the covers up just to a certain point.  I watched him open his notebook and record the time he was going to bed, so meticulously.  I watched him make sure that his back scratcher and other items were on his desk where they belong….that his clock light was dimmed…..that his glasses were just where he always leaves them beside his watch that he was sure to remove from his arm. 

His routines are his life.  Even when he feels terrible after a big seizure, he still maintains his definition of normalcy and routine.  I do admire him for that.  He’s so determined despite how his body works against him.  So strong even though he’s weak at times like this. 

Yes, I do hate autism and how it has altered Aaron’s life in huge ways.  It has also altered my life in huge ways.  But I do need to be careful not to let my anger at autism be a cause for hurting Aaron’s heart.  I think he understands my statement from the other morning.  I still wish I hadn’t said it.  Lesson learned, I hope. 

That train will be on that track every single day.  I can’t change its path or its inconvenience in my life.  But I can change my attitude, and when I feel like muttering useless words I need to pray instead……count to 10 or to 100……go sit in the flower bed with Aaron for some mulch therapy……clap a few times like Aaron does to relieve my tension…..whistle or whoop out loud with Aaron…..

Poor Gary.  I don’t know if he could handle two of us in the house.

 

I Know What Colby Jack Is!

I thought I would share some highlights (or not!) of Aaron’s week.  It’s been full of ups and downs, as usual.  Our life with Aaron is always a yo-yo type existence.  We may be laughing one minute, and not long afterward we may want to cry.  That’s where I’ve been this week.  Thursday was my day of tears…..tears of frustration and worry for Aaron as he bears the repercussions of his behaviors.  Aaron had a rough time at his day group on Wednesday, so he wanted to stay home on Thursday.  I let him, all the while wondering if I was right in doing so.  I wish I could say I have all the answers, but Aaron constantly shows me that I do not. 

I’ve been with Aaron, even recently, when he walks into Paradigm, his day group.  As soon as he walks in the door, he puffs up and usually launches out toward someone.  It may be to say hello and then try to say something funny while he bends over and rubs his hands together in glee….or it may be to give someone a resounding whack on their arm or back or rear…..or it may be to step on someone’s foot……or it may be to say something that he thinks is funny, but which is not funny at all.  Clients and staff have the same reaction that Gary and I have at home, either laughing or cringing or having to correct. 

After his rough day on Wednesday, and his stay-at-home day on Thursday, I was wondering how Friday was going.  When he burst in our door at the end of his day, he was happy and smiling.  We talked awhile before I asked him how his day had gone.  He told me he had a good day.  He went to a movie with the group, and Stephanie and Shauna asked him to sit between them.  We talked about his popcorn….extra large, of course…..and I asked him if he had gotten a refill.

“No,” he answered.  “Because I don’t want to get fat like ______.” 

See?  There he goes, being offensive…..and he just doesn’t get it, or can’t control his words, or doesn’t care.  Who can know from one moment to the next?  I scold and correct, but he is still sure in his mind that he doesn’t want to get fat like _____, and Mom asked if he got a refill so he had to tell her why he didn’t, and I feel that my words are useless.  Sometimes his words are actually humorous because of their bluntness as he says things that others would never say, at least out loud, but we can’t let him see us laugh.  Personal insults are never humorous, though, as we tell him repeatedly. 

Anyway, he decided that it was important to tell me about a good thing that happened.  “Mom!” he exclaimed.  “I made Shauna laugh today!”

“Well, that’s good,” I answered with a hint of caution that he didn’t notice.  “How did you make Shauna laugh?” I asked with a little dread.

“By making farting noises!!” he proudly answered, bending over then while he rubbed his hands together in delight.  How does he have skin left on his hands anyway?

You see why I ask with dread.  Do I act proud that he made Shauna laugh, even though it was because he made farting noises?  Or do I frown and try to correct his continual use of farting noises for affect?  I chose to try to correct, with a smile, but he was already off and running with his next subject.

We had our first spring thunderstorm on Monday night.  Aaron loves thunderstorms and rain.  I didn’t even realize we were about to get a storm as he got ready for bed and told me goodnight.  His bed was just right.  We had gotten all the bumps out of the covers.  Well, I had, as he stood there staring at the one large bump that he wanted smoothed out before he would progress any further with his bedtime routine.  Mr. Snake and Mr. Skunk were in his bed just right, too, so I was able to hug Aaron goodnight and escape to our bedroom…..where Gary and I lock our door on most nights for our well-being and peace.

It wasn’t long before I heard the first rumble of thunder, soon followed by another rumble.   Thump, thump, thump!  That was Aaron walking with great purpose up the hall.  Knock, knock, knock on our bedroom door….after he had tried to first open it without knocking.  Thus the lock.

“Mom!!!”  Pause.

“What, Aaron?”

“Was that thunder?” he asked.

Yes it was.

Thump, thump, thump back to his room.

Soon…..thump, thump, thump back to our room.  Tried to open door.  Knock, knock, knock.

“Mom!!”  Pause.

Yes, Aaron?

“Is it going to rain?” he wanted to know.

I think so, Aaron.

Thump, thump, thump once again to his room.

But not for long.  Thump, thump, thump to our door once more.  Tried to open door.  Knock, knock, knock.

“Mom!!”  Pause.

What now, Aaron?

“Is it raining yet?” he asked.

I don’t know!!  WHY DON’T YOU LAY DOWN AND LISTEN??

Thump, thump, thump down the hall again…..for the last time, thankfully.  He did lay down in his bed and listen to the storm, and to the little bit of rain that we got.  It’s a process for Aaron, though. 

This morning Aaron was eating some of his Colby Jack cheese cubes, which he loves.  It wasn’t long before his hand reached over my shoulder as I sat at my computer.  In his fingers he held a solitary cheese cube….for me.  When he offers me food like that, held in his fingers that have been who-knows-where, my brain is yelling, “NO, NO!!  Don’t take it and definitely don’t eat it!!”

But my heart says, “Oh now, come on.  It means a lot to Aaron for you to take it, and even more for you to actually EAT it.” 

You see, I’ve often tried to delay the eating of such offered treats, but Aaron follows me and watches me until the morsel is in my mouth, chewed, and down the tubes.  No fooling Aaron on that one.  My immune system is awesome, probably due to all the germs I ingest with each Aaron food gift.  I thanked him for the cheese cube as I held it with suspicion, hopefully suspicion that was hidden from him. 

“See?” he said as I watched him put a cheese cube to his mouth.  “There are two ways to eat it!” 

He then demonstrated how you can bite the small cheese cube in two.  “You can bite the half off!!” he declared with delight. 

I laughed as he laughed.  Only Aaron would take a boring cheese cube and make it funny.  He never did show me the second way to eat a cheese cube because he followed me while I went upstairs, still holding my cheese cube, as he watched like a hawk to see when I would eat it…..either whole or by biting the half off.

“I know what Colby Jack is,” he told me.  “It’s cheddar and swiss!!” 

So then I was laughing at my silly little cheese cube as we discussed its true make-up, and I promised Aaron that I would eat it….which I did.  No side effects yet.

Little things become so huge to Aaron.  A storm….a cheese cube. Through his observations I find myself drawn into the complexities of even the most mundane things.  And yet Aaron so often cannot see the complexities of things that truly affect his life…..things like his comments and his behaviors that can be so annoying and insulting.  He would much rather talk about a storm or a cheese cube than talk about his hurtful words or his hitting.  This is the hidden element of his disability that so impacts his life, but he doesn’t get it.  It’s very hard to always remember this about Aaron, and to react with understanding and instruction. 

 
That little cheese cube reminds me so much of Aaron.  He thinks it’s Cheddar and Swiss, and we’re reminding him that it’s Colby and Monterey Jack.  He thinks it’s all right to do this or say that, and many of us are reminding him that it is not all right to do those things.  Life is not meant to be lived the way that Aaron often perceives it, so we keep hammering away and hoping that someday…..or at least on most occasions…..Aaron will remember what should truly comprise his interactions with others. 

It’s not farting noises, either, by the way.

 

 

 

 

 

Headed Down Pity Path

I’ve been trying to decide how to write this blog post….or if I even should write it.  Yes, I think I should.  But how to do it in a way that doesn’t make Aaron look “bad” or make me look selfish.  Yet the truth is, Aaron isn’t bad but I am sometimes selfish.  I’m human and I get tired, but I also have to acknowledge where my roots often rest…..and that’s sometimes in soil that grows some undesirable attitudes. 

Tuesday night saw Aaron having four large seizures, so I was up four times with him.  I did sleep some between the episodes, which I often am not able to do, but still I was tired that morning.  I stayed up after Aaron’s last early seizure, and later I did the usual clean-up.  I stayed close to him as he lay on the couch for the rest of the morning, waiting to see if he had another seizure.  I had the laundry going and was able to do some other things while I sat there at the kitchen table.  I was on Psalm 18 that morning in my study time, which was perfect for me.  My favorite verse is there….verse 29.  “For by You I can run upon a troop; and by my God I can leap over a wall.” 

I felt very thankful as I sat there.  God seemed to be prompting me to focus on thankfulness.  I was thankful that Aaron was for the moment seizure free, warm, and safe.  Thankful that this wasn’t the day I was to take Nora to an important doctor appointment.  Thankful that my washing machine and dryer were just steps away, convenient and functioning.  Thankful that Aaron’s seizures aren’t far worse, as so many of our friends experience with their children.  Thankful that I don’t have to work, because it would be nearly impossible for me to do so.  Thankful for coffee.  Very thankful for coffee!

Later, Aaron woke up and he struggled to get off the couch.  After a few minutes, as he sat with me at the kitchen table, he told me that his arm was hurting.  I think he sprained it during one of the seizures.  Soon I asked him if he would want to eat, and we figured out together that some Cream of Chicken soup would hit the spot.  He was worried, though, that with his right arm hurting he would not be able to lift the soup spoon to his mouth.  Therefore, I demonstrated to him how he could eat by bending close over the bowl.  Aaron sometimes doesn’t like us to use our hands to demonstrate some action.  Don’t ask me why, but sometimes it irritates him.  So when I bent over to show him how he could eat, he snapped at me.  “You don’t have to show me how to do it by going like this….” he said with irritation as he copied my movement. 

It was as if he had thrown cold water in my face.  I knew that he was feeling terrible…..I knew that he has never liked physical demonstrations like this……I knew that his autism makes him very blunt…..but I also knew at that moment that I felt very hurt.  I just looked at him, and he knew very well that I was not happy.  I didn’t say a word, but got up and fixed his soup.  I got him all settled there at the table so he could eat, and I coldly told him that I was going upstairs to take my shower. 

For some time, my thoughts were headed down Pity Path.  How could Aaron treat me so rudely after all I’ve done for him?  It was very easy to rehash all of my sacrifices for Aaron, and very easy to nurse my hurt.  I was mostly silent toward him as the afternoon wore on around us.  He seemed to be fine, watching a movie, so I slipped down to Dillon’s to run an errand I had hoped to run that morning, but couldn’t because of Aaron’s seizures…..how I had to sit with him and didn’t get to accomplish what I wanted when I wanted……how my day was interrupted and my schedule trashed…..

See how it went with my thoughts?  Where was the thankfulness I had experienced earlier?  Where was my, “…..with God I can leap over a wall?”  I’ll tell you where it was.  It was buried under my self-centered thoughts, my tired body and mind, and my feelings of being very unappreciated by my son.  I had some major adjusting to do over the next hours, and some soul searching, as well. 

We all have many moments of feeling just as I did on Tuesday afternoon.   As a parent, spouse, sibling, friend, worker on the job, volunteer at church…..no matter where we are…..we will get our feelings hurt.  And as the mother of a special needs child who also has autism, it’s easy to be hurt a lot.  Aaron doesn’t have filters or feelings like we do.  He must be reminded over and over to be kind, to think of other’s feelings, to react in a nice way instead of a blunt or harsh way, and on and on.  He is very self-centered, and this is a huge reason why it doesn’t work if I am that way, too. 

I think it was important for me, personally, at that moment to step back and remove myself from Aaron and the situation.  The danger I faced, though, was in nursing my hurt instead of focusing on what God would do.  What I allow my thoughts to focus upon will determine my attitude, and will even determine whether I sin in the situation or grow in it.  To be hurt was normal.  To let my roots sink into the hurt as I planted myself in it would not be beneficial or right. 

Christ gave up a lot for me.  How often do I react to Him with unthankfulness or pride?  He didn’t hold on to his position as God’s Son, but emptied Himself of all that and became sin for me.  That’s the best example I can follow as I experience the hurt and the tiredness of being a special needs Mom….or any of the other many roles I have in this life.  It can’t be about me, or I will be continually frustrated.  It must be about honoring Christ, and caring for Aaron.

Understanding how Aaron feels after seizures…..understanding his autistic way of viewing the world….is very necessary, as well.  So is training him and reminding him of his actions, and how they can hurt or help others. 

Understanding how I feel after Aaron’s seizures…..understanding my sometimes selfish way of viewing the world…..is also very necessary.  Both must be recognized and dealt with before being allowed to get out of hand. 

Well, back to my verse in Psalm 18.  I didn’t exactly leap over that wall with God.  He more or less had to lift and shove me over it.  I wanted to sit at the base of the wall and lick my wounds, but He wouldn’t let me.  I’m glad for that!  Glad that He is patient and persistent with me.  Glad that He shows me His love.

Just like we have to be with Aaron.  It won’t be the last time, either.  For me or Aaron, either one. 

A Day With Aaron and Rosa

I have written often in the past about Aaron and his special friend, Rosa.  Aaron called her Rosie for the longest time, and that’s what I still find myself calling her now.  They have a very sweet friendship.  Aaron has struggled with whether they are boyfriend/girlfriend, but both we and Rosa’s parents encourage friendship and nothing more.  In other words, we don’t push them toward a relationship that might open doors that we don’t want to open at this point……and probably never.  Aaron and Rosa are very happy with things the way they are.  Their happiness warms our hearts.

Rosa has had a change in her day and residential services, so now she and Aaron don’t see each other at all.  At first, they both seemed to be handling this change far better than we had feared they would.  Over the weeks, though, they have shown signs of missing each other a lot. 

“It scares me that Rosa and I aren’t friends anymore,” Aaron told me one day.  I assured him that they were indeed still friends, but to Aaron it was hard to figure that out since he didn’t see her anymore.  I felt so badly for him as I tried to explain things once again.

“Rosa left me,” he said on another day.  He said the words flatly one day, without any drama, which only seemed to increase their depth.  I knew he was missing her a lot.

“I miss Rosa,” he mentioned on another day.  “It seems I can’t be with anyone to tease anymore and to talk like we used to do.”  So I mentioned some of his other friends, but he only said, “They don’t tease like Rosa.”  And some of it isn’t that Rosa would tease Aaron so much, but that Rosa understood Aaron’s teasing.  And where sometimes Aaron’s teasing goes too far, and might involve a hearty whack on the back or the rear, he never to our knowledge went that far with Rosa.  He even admitted to us that he wouldn’t treat Rosa like he did others. 

Another issue also presented itself shortly after Rosa’s absence.  Another female client decided that it was time to take advantage of this opportunity and to see if she could talk Aaron into being her boyfriend.  This didn’t go over well with Aaron at all.  He was a combination of angry and confused as he tried to ignore her repeated offers of a relationship now that Rosa was gone. 

“______’s eyes looked like she loved me,” agitated Aaron told us one day.  Now how perceptive is that?! 

“Stephanie and Shauna don’t say they love me,” he said on another day.  “That’s good to me, Mom.”  He knew that those two friends were just that…..good friends…..and that they had no designs on Aaron’s affections other than friendship. 

Well, over time I think we’ve worked out the situation with his friend who wants to be more than a friend.  The staff at Paradigm stepped in to intervene, and I haven’t heard any more from Aaron concerning her proposals or her loving eyes. 

Louise, Rosa’s mother, called one night this past week and told me how much Rosa is missing Aaron.  We decided to meet for another movie day this past Saturday, with pizza to follow at our house.  When I told Aaron, his eyes lit up.  I asked him if he wanted to go to a movie with Rosa and then have pizza, and he answered with a resounding, “YEAH!!”  He agreed to see the new Cinderella movie, and decided not to go watch it with Paradigm on Friday since he would see it with Rosa on Saturday.

I told Aaron exactly what time on Saturday we would be leaving when he asked me that question on Friday night.  And then I repeated it several times on Saturday morning.  The EXACT time was, as always, of utmost importance to Aaron.  He was watching his Egyptian movie, Sands of Oblivion, when I told him it was time to leave for the theater. 

We walked into the theater lobby and saw Louise sitting with Rosa on a bench.  Aaron marched right over and said, “Lou-ees!”  That’s how he pronounces her name….with a French or Italian spin to it…..and it’s quite hilarious.  “Lou-ees!” he said.  “Do you know Im-La-Rah from Sands of Oblivion?!” 

I laughed, and Aaron waited for Lou-ees’s answer while Rosa sat there juggling her colored pencils that she was holding.  Louise answered his question by telling him that she didn’t know Im-La-Rah…..and she answered like this was perfectly natural.  She reacted like only someone who understands Aaron and others like Aaron would react. 

And you know what?  Aaron and Rosa didn’t say ONE word to each other.  Aaron didn’t say hello to her as we hurried into the theater, and she didn’t say hello to Aaron.  They don’t do that.  And they’re happy as can be with it.  They were together and that’s all that mattered to them.  They don’t and won’t show their happiness or exhibit their feelings like you and I would do.  Aaron sat on the edge of his seat, talking nonstop, and Rosa was also talking…..but they weren’t talking to each other.  Rosa was busy with her colored pencils, and Lou-ees was drawing pictures for Rosa the way she enjoys, and Aaron was talking a mile a minute about anything and everything while Rosa interjected her comments to me or Louise.
 

I moved over to sit next to Aaron during the movie, for damage control.  It was a good thing I did.  Cinderella wasn’t his favorite movie.  As he told me later that night, “Cinderella is a girl show.”  But he wanted to see the movie that Rosa wanted to see, and when he told me that, I was just filled with warm fuzzies.  But because it wasn’t his favorite movie, he was pretty restless, so that’s where the damage control came in.  Aaron, don’t stretch with your arms in the air…..don’t kick the seats in front of you…..don’t yawn so dramatically…..quit saying loudly, “I know this story!”…….and please don’t say “Sexy!” when they kiss!!

I won’t even dwell on our foray into Little Caesar’s to get pizza.  Let’s just say that Aaron was large and in charge, bursting in the door of the very small, crowded lobby and telling the clerk, “I want two pepperoni!!” the moment that we entered.  It was a whirlwind and we left our mark, that’s for sure, on employees and other customers alike.  Louise and I just laughed as we exited.    

Back at our house, we ate pizza on our patio and talked lots more.  Rosa asked Louise to tell us this and that, and Aaron was his usual verbal self….in a good way, thankfully.  After we ate, he brought out his bag of Skittles to share.  And he gave Rosa a brand new container of Pringles, his favorite flavor…..not a flavor he didn’t like, such as he gave to Andrea one day.  Plus he gave Rosa a piece of his very favorite Swiss Cheese for her to take home and eat later.  We took a little walk around the yard, Aaron still talking and Rosa still holding her colored pencils.

 
We waved goodbye as Rosa and Lou-ees drove away, with talk of getting together again still fresh in Aaron’s mind.  I don’t know that he and Rosa said goodbye, either, any more than they said hello.  I was focused on Aaron being quiet long enough for someone else to say a word or two.  The rest of the evening, Aaron followed me around as I worked on laundry and other chores.  He was happy and he was full of talk, of course.  He told Gary all about the day, too, several times.  Trust me.

Before she died, Cinderella’s mother told Cinderella to be kind and to have courage.  Kindness is something we don’t always see in Aaron, although he exhibits it more than ever as he’s aged.  But toward Rosa, we do see Aaron showing that kindness.  And she shows him the same.  It’s so sweet and wonderful to see them that way together.  Relaxed and happy, even though they don’t always demonstrate their closeness to each other in the way that you and I would do. 

Lou-ees and I will hopefully do this again soon.  I guess we’re the ones with the courage…..and I laugh as I say that.  We’re also the ones with joy in our hearts as we give our special adult children a special day together.  Having them is a responsibility that won’t go away at a certain age like it has with our other adult children. 

But with that responsibility comes blessing…..some days hard to find……but on other days, like Saturday, all around us for the enjoyment. 

The Back Burner

Gary and I live in a house that was built in the 70’s.  We’ve done some updating throughout the house, but there’s still a lot we need to do.  In our kitchen, we have one remaining relic from the 70’s – our JennAir stovetop.  I’m sure that in its day, that stovetop was very current and perhaps rather expensive.  But those days are long gone, and now our JennAir is definitely past showing its age. 

Yet it still works just fine.  Well, except for the left back burner.  That burner died last year.  Gary worked and worked on it, to no avail.   So off we went to a reputable appliance dealer last year to look at other stovetops.  We had a contractor that they recommended come to our house to give us an estimate of what it would cost for a new stovetop to be inserted along with an exhaust system, and some new countertops while we were at it. 

As we tried to make our decision, we had some unexpected financial expense occur, so we put our possible kitchen plans on hold.  I’ve actually managed just fine as I’ve cooked with the loss of a burner….a large burner, to boot.  Even the extra Thanksgiving and Christmas cooking wasn’t a problem.  Yes, there are times I’ve missed that broken back burner but I’m very thankful for the one that does work.

 
 
I’m thinking of those stovetop burners today because this morning I read Psalm 13.  No, David wasn’t talking about JennAir stovetops, but in a sense he was talking about a saying we often hear about back burners.  We have a saying about something we will deal with later, or something that is put out of our mind for awhile.  We say we have, or we will, put that on the back burner.

But have you ever felt like YOU are what’s on the back burner?  Do you ever feel like your life has been derailed by events you can’t control, and that things are at a standstill?  Do you question why things have turned out this way, and why God seems to be either silent or not changing things the way you want?

If anyone had a reason to feel like he was on the back burner of life, David did.  He played music for King Saul, was beloved by the people, a champion in battle, and was to be the next King of Israel.  But David ended up running for his life from the murderous King Saul.  David slept in caves as he hid in the mountains with his rag-tag group of followers.  There seemed no end in sight for him…..no answers to his questions or his prayers.

“How long, O Lord?  Will you forget me forever?” David asked God in Psalm 13.  “How long will you hide your face from me?”

Then David does what he’s always done….he prays.  He prays even though he’s prayed many times before, and still seems to receive no answer.  I’ve been there.  Have you?  “You pray and pray and God does not pay attention; He hides His face, you say; you plead and cry and there is no relief.  So what do you do?  You go right on praying, of course!  To Whom?  To the God Who has not heard.  Is there any other?  This is lousy logic but excellent faith.”  (Dale Ralph Davis)

Sometimes all we have when we’re on that back burner of life is faith, even when we don’t feel like God hears us.  We know in our head that He hears, but we don’t see it and we don’t feel it.  After all, didn’t the writer of Hebrews say that “Faith is the assurance of things hoped for, the evidence of things not seen?” 

David’s assurance in his life, as he sat on that back burner, began as he said in Psalm 13:5, “But I have trusted in your lovingkindness.”  That word is the Hebrew word, “hesed.”  It’s love that refuses to let us go.  So no matter where we are, and no matter what we’re going through, as God’s children we can count on His love that keeps on keeping us, never letting go of us. 

What’s your back burner today?  Is it a chronic health condition that has you sidelined?  Do you have a difficult marriage?  Are you lonely and forgotten?  Have your children disappointed you deeply?  Have others been given the jobs or ministries that you used to do?  Is age catching up with you? 

Whatever your back burner experience is…..whatever is making you feel trapped or useless…..whatever is making you question God…..don’t allow this time to be wasted.   Don’t be like my left back burner, cold and dead.  Be like the other back burner, working away back there.  Keep praying, even if you feel like David and wonder if God is hiding His face from you.  Know that God loves you with a firm love that won’t let go. 

And know that being on that back burner doesn’t mean you’re abandoned.  It means that God has set you there for a time and for a purpose.  And during that back burner time, be working in whatever way you can for God.  Be like David, who wrote some of his most profound Psalms during his time on the back burner. 

Just see what God can do through you and with you during your time on the back burner of life.  God can cook up something amazing on those back burners!     

Still Our Sweetie Poo

I got one of those phone calls yesterday that I don’t like to receive.  It was Barb, from Paradigm, trying to tell me about an incident with Aaron.  It was hard to hear her, though, because she put it on speaker and I could hear Aaron in the background.  He was yelling as he tried to explain his story, and he was crying, and no one had to tell me that he had just had a meltdown.  My heart sank.  It’s been awhile since we’ve seen this with Aaron.  I felt drained when I got off the phone, and I wasn’t even there when Aaron lost it.  It’s just very discouraging to feel like things are going along so well, and then BAM, he hits that wall again. 

In his frustration, he broke his watch and he broke his brand new two day old glasses.  This is very typical of Aaron when he gets that upset.  He will break something that’s important to him, and then afterwards he’s just eaten up with remorse.  The remorse comes from all of his behaviors when he loses his temper, but he knows that breaking things comes with repercussions.  He won’t get a new watch right away.  He didn’t know if his new glasses could be fixed. 
 

The repercussions with people’s hearts is an area that he is not quiet adept at understanding.  He’s doing better with empathy as he’s gotten older, but he is usually very narcissistic and only thinks of himself when he is in a rage.  I guess many of us are that way when our emotions take control, but Aaron is often that way even when he is even keeled.  Thinking of others and what they are feeling has been long in coming for Aaron’s autistic mind.  He’s getting there, very slowly, sometimes more than others.  For instance, not long ago he found out that Andrea had a migraine.  The day that she and I were talking on the phone and she mentioned it, Aaron was frustrated that our phone call was taking my time away from him.  I chided him when I got off the phone about how uncaring he seemed.   The next day when she called, he said to me, “Tell Andrea I cared for her migraine!”  He was very pleased with himself that he cared, because even he knows how hard it is for him to feel that emotion, and because he felt guilty that he had not felt it at first for his sister.

He came home yesterday, face and eyes all red from crying.  He told me what had happened, so we discussed it as much as I felt that he could handle.  He lets me know when he has had enough.  Barb and I talked privately when Aaron was up in his room, and Melinda and I texted.  I felt like I had a good grasp of what had happened, although part of it was still fuzzy.  That’s why I tried to talk to Aaron again after Wheel of Fortune was over, but he did not want to talk about it further.  The book was closed, in his mind. 

I was almost asleep last night, at 11:30, when I heard our monitor on the nightstand beeping.  It meant that Aaron had turned his unit off in his room.  And it wasn’t long before our bedroom door opened and Aaron strode in to tell me that he had turned his monitor off and he had no intention of turning it back on.  There!

“Oh boy,” I thought.  “Here we go.”

Aaron has these residual effects from his behaviors…..effects that show up hours after the incident is over and hours after we have talked about it.  I followed him to his room, noticing his agitation.  He turned and told me that I was mean, that Dad was nicer, etc., etc.  I knew that my second conversation with Aaron was the cause of this, but I couldn’t take it back.  He thought I didn’t believe his version of the story….that I would make him leave Paradigm……and on and on.  And he assured me once again that he was NOT turning on his monitor.  That was the biggest sign of his rebellion that he could come up with at the moment. 

I left his room frustrated, and Aaron was frustrated, and the monitor stayed off all night.  This morning, I left Aaron alone when he got up.  Even when he stood staring at me silently, I did not speak to him.  I poured his coffee and carried it upstairs.  I got myself ready and I opened my bedroom door, and finally he walked in and told me that he was not going to Paradigm today.  I knew that was coming, so I asked him if he would go on Monday and he gave an exuberant yes. 

So many of my decisions at these times are uncertain.  Is it right to not make him go today to his group?  Do I still get him his Friday goody bag?   Was this outburst because of his new seizure drug….the one that can cause anger?  Do I take him off this drug?  Or do I wait awhile longer to give it more time? 

Well, I didn’t make Aaron go to Paradigm.  I know this is his typical response to such stressful situations, and I know that he does need time to emotionally recover and to sort it all out in his head.  His big, impulsive hug for me later showed me how thankful he was that I let him have some time and space today.  I still don’t know about the new seizure drug and what to do there, but I think I’ll give it some more time.  I think.  I did not get him his Friday goody bag.  He hasn’t even asked about it because he knows that he really messed up.  My mother heart wants to take care of him…..to blame the autism….to quote the professionals about his emotional deficits.  But I know he also needs consequences, and so the goody bag will not happen today.

I did take his glasses to the optometry shop.  “Wow!” the technician said.  “He sure did a number on them.”  I didn’t have Aaron with me because I wanted to explain what had happened, but not in front of Aaron. 

“Yes,” I agreed.  And I wanted to add, “You should see the number he’s done on my heart, and on the hearts of others.”  But of course I didn’t say that. 

By some miracle, the young man brought Aaron’s glasses back to me later, all fixed and ready for Aaron to wear again.  I wish it would be as easy to fix the situation of yesterday, but that will take more time. 

Later, Aaron and I took Jackson for a walk around our neighborhood circle.  It’s a beautiful day, perfect for a walk.  When we got home, Aaron quickly grabbed his mulch bucket and situated himself out in the flower bed for some mulch time.  He stayed there for nearly an hour, relaxing and sorting out his thoughts with each little piece of mulch that he broke.  It’s time that he needed…..quiet, peaceful, reflective time for him. 
 

Wouldn’t it be wonderful if mulch would cure autism?  Or if mulch time would give me all the patience and wisdom that I need?  I would say, “Scoot over, Aaron!  Make room for me!  Will you share your bucket?”

I know every parent of autistic children can understand how helpless I sometimes feel.  How embarrassed at my son’s behavior.  How frustrated and then sad at his response. 

Then I think of Barb, who loves Aaron and who said, “Tomorrow’s a new day.  We’ll just put this behind us and go forward.”

And Melinda, who also loves Aaron, and who said, “Aaron informed me that I am NOT his sweetie poo anymore!  Well, he is still my sweetie poo.”

That makes me smile, and it makes me thankful for those that work with Aaron and love him even on the bad days.

We will, and we do, move forward.  Today Aaron said, “Mom, I’ll turn my monitor on tonight.”  It’s his way of telling me that he’s better now, and that he is ok with me…..mean old Mom of last night. 

Yep, it’s a new day and we will go forward.  And I just hope Aaron knows how many people cared for him when he messed up.

He’s still our sweetie poo!

 

 

I’m Glad You Took Care of Me

Aaron had two doctor appointments this week.  On Tuesday we went in for his yearly eye exam, and on Thursday we went to the dentist to have his teeth cleaned.  He very much prefers the eye exam.  For one thing, nothing hampers him from talking to his heart’s content at the optometry clinic.  No one has their hands in his mouth, doing uncomfortable procedures, and so he can talk and talk…..which he definitely did.  He charged right up to the check-in counter at the eye clinic and didn’t even say hello before he started telling the two receptionists all about Fallen Skies and alien skitters and the skitter-in-charge, named Cochise.

It’s just amazing how Aaron will launch right into his tall tales without one word of hello or a few words of explanation to get him started.  Nope, he just barrels right in to his review of whatever is currently on his mind, oblivious to the confused looks of those to whom he is talking.  Or he’ll mention his day group, Paradigm, or someone at Paradigm, as if these ladies know all about this place and those people……which they don’t, and so once again they are confused.  This is why one of my job descriptions is that of interpreter.  I definitely multi-task big time as I try to sign forms, go over insurance, check for information changes, and explain skitters. 

Thankfully these ladies were delighted with Aaron.  Their give and take with him only encouraged him to continue with his stories, and I had to urge him to finally hush and follow me to a chair.  His forced silence was short lived.  He was immediately called back to begin the exam, so he hardly missed a beat before he was telling a new person about Falling Skies and skitters and that he broke his glasses the week before.  He made me laugh as he did one of the eye tests, putting his hands up to the machine as if he was gazing at something exciting.  Maybe he thought he would see another skitter? 

 
The eye exam went well with patient Dr. Fisher……our friend, Brandon.  Of course, Aaron just had to tell him that he got in trouble for calling Stephanie a babe at Paradigm.  And there I was, proud Mom, wondering if I should explain.    Then it was on to get his new glasses.  Trying on glasses is Aaron’s least favorite part of this process.  It ranks right up there with trying on clothes.  He just doesn’t want frames that make him look like Clark Kent.  After that fact is established, he could care less.  And going over insurance is really boring to him.  Again, two understanding technicians and lots of laughs helped tremendously.  Soon we were eating lunch at Chili’s and all was great in Aaron’s world.

Thursday was teeth cleaning day.  The dental exam is really, really Aaron’s least favorite thing in the world to do.  Most of us don’t like teeth cleanings, and Aaron is no exception.  It’s uncomfortable for Aaron, plus he can’t talk and so it’s a long process of frustrating scraping and rinsing and forced silence.  I used to go back with him, but now I let him go alone.  I urge him to be mature…..plus it’s best for me to have an element of ignorance about what really goes on back there, on Aaron’s part.  I know he gets frustrated and impatient.  Once he bit the hygienist.  He said it was an accident.  I wasn’t totally convinced. 

Another part of it is that Aaron doesn’t want us to talk about how he doesn’t do a good job with brushing his teeth.  That’s why we have gone every four months for cleaning, and now have decided to go every two months.  Aaron starts getting angry if I talk about his teeth at home, if I try to help him at home, or when the dentist or hygienist is talking to me about Aaron’s teeth.  We try to keep it low key but with instruction for him, too, yet nothing really helps. 

Later, as he took full advantage of the Pizza Hut buffet, we mentioned his teeth just a little.  Most of the time we talked about whatever entered his mind as he thoroughly enjoyed the pizza and the salad.  I laughed at the dressing on his nose and the look on his face, and I had to tell him many times to talk softer as he was talking in high gear once again, like he was making up for the lost moments when his mouth was silent at the dentist’s office. 

 
We went to Sam’s for a few things.  On the way home we stopped at my elderly friend’s apartment.  Aaron hadn’t seen Nora’s new place.  I dropped off a sweater to her that I had repaired.  She was delighted to see Aaron.  Once again I was the interpreter as he told her about skitters and Paradigm this and that, and she stood there clueless.  She gave him a piece of candy, and he thanked her.  “Are you glad I said thank you?” he asked me as we left.  “Are you glad I told her hi?”  I told her that I was very thankful that he had practiced his manners.

Manners were a little absent later that night, however.  A lot absent, actually.  Like a light switching off….or on…..Aaron’s mood changed dramatically.  We haven’t seen that kind of change in a long time.  He instantly went from happy to angry as he prepared to go to bed.  He decided to focus on his teeth. 

“Mom, you make me feel like I’m bad in my mouth!  I’m not going back to them!!”

He slammed our bedroom door, and he slammed his bedroom door.  Then I heard him stomping up the hall, where he barged in our room yet again.  “I’m not going back to them!” he angrily said….referring to the dentist.  And he called me a name, several times.  This was surprising because Aaron has been so mellow lately.  I wondered if this foul mood was related to his new seizure drug, which can cause anger.  Or was he going to have some seizures.  Often, mood changes precede seizures. 

And sure enough, he had two hard seizures during the night, and another one yesterday morning as he lay on the couch.  He chewed the end of his tongue again, and wet the bed.  I wondered what he thought as he silently watched me yesterday morning in his bathroom, on my knees cleaning up the pee that was on the floor around the toilet.  He was unsteady when he got up and he told me this had happened. 

I thought about his anger the night before, and the name he had called me.  It would be easy sometimes to show anger right back to him, and I certainly have done that.  But that night before I had remained mostly silent, knowing that it was futile to reason with Aaron when he was so angry.  Now before our issue was resolved, I was on my knees cleaning up his mess…..because I love him.

Just like God loves me, I thought.  Here, once again, in my life with Aaron I have another example of God’s love for me, expressed unconditionally.  God loves me when I’m happy…..He loves me when I’m angry……and he cleans up my messes and he soothes my heart over and over again.  How can I do less with Aaron?

I washed all of Aaron’s bedding during the day as he slept on the couch, and was reminded again of God’s love for me as I love Aaron.  I’ll be doing this again, too, and so will God with me.  Faithful love is what God shows to me, and is what I need for Aaron, as well…..even with the still fresh reminder of Aaron’s anger the night before. 

Last night, when Aaron could no longer keep his eyes open, I helped him get in bed.  His covers were all clean and fresh.  He was ready to get in bed when he remembered that he needed to fill out his notebook.  He had written the time that he got up that morning, so now he wrote the time that he went to bed.  It was 9:52.  Then he asked me to put his snake and his skunk in the bed.  I laid Mr. Snake under the covers and Aaron stood there staring at him.  Then he told me to scoot him over a little, which I did.  Aaron stared again.  And I had to move Mr. Snake once more until he was finally in just the right place.  Then the skunk went in the bed, just right, and finally Aaron got slowly under the covers.

He gave a huge smile as he felt the weight and the warmth of the covers on his tired body.  We hugged and Aaron smiled again.  Then he laughed, and I asked him why. 

“I told Dad I’m glad you took care of me when I had a seizure,” he slowly said. 

All thoughts of anger and name calling vanished at that moment.  I was thankful for the privilege I have to take care of Aaron, and I told him that.  He smiled again as I pulled the covers up until just his smiling face was showing.  I turned off his light, and I closed his door…..and I thought of what a difference a day can make. 

What a difference knowing God makes, too.  I’m glad God takes care of me so that I can take care of Aaron.  And I’m glad that He continues to use Aaron in my life to teach me so many things about Himself.