Category: Asperger’s Syndrome

Sharing Aaron

Share:  to partake of, experience, or enjoy with others.

Aaron, for some unknown reason, has been in a sharing mood lately.  It’s encouraging to Gary and me to see positive traits such as this in Aaron.  Anytime he thinks of others beyond himself, besides slapping them on the back or making a rude remark about them, makes us surprised and thankful.  His sharing of late has come in the form of bringing us little portions of his special snacks.  A couple cashews here, a few gummy bears there, a piece of gum thrown in the mix……it’s all been part of his sharing frame of mind recently.  Never mind that we are often fearful of actually putting any food item that Aaron brings us in our mouths.  We just never know where those hands of his have been, if you know what I mean.  According to our scientist daughter, being exposed to germs helps to build our immune systems.  Therefore, Gary and I should never be sick again in our natural lifetime. 

There are other forms of sharing that go on with Aaron, as well.  During supper a few days ago, Aaron told us about the song “YMCA” and how he had heard it on the radio in his day group van.  Aaron liked this song and he wanted to tell us all about it, and to ask lots of questions about it.  I noticed that Gary was on his phone and in just a few moments he held his phone up for Aaron to see and to listen…..to The Village People singing “YMCA.”  I just stopped eating and watched this scene.  Gary held his phone for Aaron as he watched Aaron’s reaction to the song and to the antics of The Village People as they did all the funny motions.  I watched Aaron’s face, too, but also Gary’s as I enjoyed the pure delight brought on by this simple moment.  Soon Gary pulled up another group, wanting to watch Aaron’s face when he told him to guess the name of this next group…..The Monkees!  Aaron laughed and we laughed as we both enjoyed the look of more delight on Aaron’s face.  “Yeah, yeah, we’re the Monkees…….”  

We were sharing Aaron…..and it was so much fun.

On Saturday afternoon, while Gary was immersed in being our IT man and working on my computer, I asked Aaron if he wanted to go out with me to do a little shopping.  He stood in the bathroom while I fixed my hair, hovering, thinking that his hovering would make me hurry and we could get this show on the road.  Soon he was coughing.  “You made my breath feel strong because of hair spray!” he sputtered.  That’s when he decided to wait for me downstairs.

Aaron’s all about shopping, always hoping that he’ll come home with some treat or item that’s just for him.  On the way to Big Lots, he asked, “Mom, is it about clothes?”  I assured him that this trip wasn’t about clothes, and he was able to relax then.  He helped me look at seasonal rugs, and then off we headed for Petco, where I told him I wanted to look for dog bed covers for Jackson……no rugs at Petco for me….and no clothes. 

We struck gold before we even got in the store, because there in the parking lot was a couple with a cart full of four amazingly adorable Mastiff puppies.  Aaron headed straight for them and they gladly let him pet their puppies.  Once in the store, Aaron had to show me the fish….the hamsters….the gerbils….the various birds….the ferret…..   I commented on how much the ferret cage smelled, so as we left the store, Aaron took it upon himself to stop at the front counter.  He didn’t care that there were people standing in line.  He stopped and informed the cashier that his mom said the ferret stunk, as he laughed and rubbed his hands together, and everyone stared at him…..and mom told Aaron to come on as she walked out the door like nothing at all was unusual.   Sharing Aaron…..

We ran into Bed, Bath, and Beyond….which Aaron confused with Bath and Body Works, so he was hoping it didn’t stink like all those things do in that store.  He didn’t mind the ferret but he thinks Bath and Body Works stinks?  Anyway, we found nothing in BBB, so I told him we would go to Kohl’s next…..and I didn’t tell him it has clothes.  We talked about fall, and I told him that I like this time of year and the colors of the trees.  “Yeah,” Aaron said.  “They don’t have leafs.” 

There were no rugs in Kohl’s, but Aaron found the coolest spider soap dispenser ever.  I would have hurried right by it, but not Aaron.  “Mom!!” he exclaimed loudly.  “Look at this!”  Others looked, too……sharing Aaron.

I suggested that we look inside Ross, right next door to Kohl’s, so Aaron gladly trotted along beside me…..ready to explore a new store.  It only took a second for him to see the hanging skeleton just inside the door…..and you know the rest.  We finally made it to the rug aisle, and looked at several styles and colors.  I would unfold one and look at it……put it back on the shelf and unfold another one……several times.  Aaron was about done with this silly rug business.  “Mom, you can’t make up your decision with rugs!” he said with a small measure of patience.  So I quickly made up my decision…..the one with dots, as Aaron described it, and we went to stand in the check-out line.

There were several customers in front of us on this busy Saturday.  While standing there, Aaron found a bag of gummy bears that I agreed to buy him.  He held his gummy bear bag but he was observing everything around him, as always.  At one of the counters there stood a man making his purchases…..a man with a very modern Mohawk hair cut…..and I should have seen it coming.

“Look at that guy’s hairdo!” Aaron broadcasted loudly.  The young lady in front of us turned and smiled while I smiled back, and also while I told Aaron to please try hard to whisper……but to try even harder not to comment on people…..in any way, shape, or form.  Please!  Not in ANY way, shape, or form whatsoever!  Sharing Aaron…..

We were finally driving home, rug and Aaron in tow…..and I was so thankful that either Aaron didn’t notice the other Mohawk hairdo man coming in the door as we left…..or he just decided that he would listen to Mom for a change and not comment.  Probably the former.  Anyway, as I drove Aaron said, “Mom, sometimes Brian at Paradigm does this.”  And I looked over to see Aaron comically trying to make his facial muscles move.  “And flaps his ears!” Aaron finished.   I laughed at the thought of flapping ears, which made Aaron very happy.  Sharing Aaron…..

Later that night, as I sat at my desk doing some things, I heard Aaron coming up the stairs.  Without saying a word, he plopped down several gummy bears for me.  I thanked him while determining in my mind if I should eat them, but Aaron walked away and I was saved from that decision for the moment.  But in just a minute I once again heard him coming upstairs, where he put even more gummy bears on my desk…..and walked out quickly.  Down the stairs he went…..and wouldn’t you know, soon he was headed back up.  He walked in my room again, but this time he didn’t leave me any gummy bears.  Instead he reached down and took some off my personal pile of gummies, smiled, and started out the door.

“Are those for dad?” I guessed.  And he said they were for Dad, and thumped down two sets of stairs to give his gummy gift to Dad.  Aaron sharing….

I looked down at my remaining gummy bears and saw three soft bears there on my desk calendar.  Three bears…..Aaron, Gary, and me, I thought.  How perfect! 

Gary and I, sharing life and sharing Aaron.

And Aaron, sharing with us…..more than just gummy bears.  Sharing his unique way of living, in many different ways, shapes, and forms. 

 

 

EXACTLY!!


Aaron can drive us a little….or a lot…..crazy with his desire for life to be predictable.  His life, that is.  He really doesn’t concern himself much with our life, to be honest.  He enjoys the sameness of every day, but rarely is every day the same, so he is forced to adjust on those particular days or moments.  Sometimes he adjusts with relative ease, and other times we drag him kicking and screaming into the world of change. 
 
Last week he knew that I was taking him to the lab for some scheduled blood work.  I had told him that he could take the day off from his day group.  We were going to the lab and then out to eat lunch at his favorite place, Carlos O’Kelly’s…….favorite because of the unlimited chips and salsa.  Aaron loves unlimited food, so he prefers Carlos O’Kelly’s to Chili’s, because at Chili’s we have to pay for the chips and salsa….and sometimes Mom doesn’t want to pay for that, of all things…..so, predictably, Carlos O’Kelly’s is his restaurant of choice.
He was chomping at the bit to leave for the lab….not because he wanted to go the lab but because he knew that Carlos O’Kelly’s would soon follow.  He came to my room repeatedly as I was getting ready.  It didn’t matter that my hair was wet…..it didn’t matter that I was in the process of drying my hair…..it didn’t matter that I was still putting on my make-up.  The question was the same each time:  “Mom, are we leaving now?”  And when I would say no, he of course would ask when we were going to leave.  A general answer would not do, but general was the best I could do at the moment…….so therefore, he kept returning as he hoped for an EXACT time.  I know better than to be exact, though.  A phone call or other interruption, such as a bad hair day, can mess up EXACT times…..and throw Aaron into believing that Mom is a liar because I didn’t keep my word.  And he doesn’t care at all about my hair….or my make-up.  His comment on my make-up recently was, “Do you wear make-up because you don’t want people to think you’re ugly?”  
Nice.
Finally, when Aaron returned again to ask when we would be leaving, I could say with confidence that we would leave in five minutes.  Finally!  An EXACT time!   I sat down at my desk to do a couple things in those few minutes, but soon Aaron was standing beside me, hovering.  He was silent as he hovered, until finally he said, “Is it 10:16?”  
“Is what 10:16?” I asked.
“Five minutes would be 10:16,” he informed me.  
Believe me, we left the house at 10:16.  And predictably, he watched every move the lab tech made and he watched her draw his blood even though she told him to look away and he wore his watch way up his arm…..as he always does.  EXACTLY as he always does!

Aaron loves taking Jackson on walks around our neighborhood circle.  Jackson is getting old, so we only take him when the temperatures are cooler.  One day Aaron asked if we could Jacks on a walk and I told him that we would do it later, when it was cooler outside.  “When will that be?” he asked.  I told him I didn’t know…..just that it would be later.  It wasn’t long until Aaron came back downstairs.
“What time will we take Jackson on a walk?” he asked.  “I don’t know.  Just later,” I once again answered.
This scenario was repeated several times.  Finally, after Aaron asked again what time we would leave, I told him that we would leave sometime after 7:00.
Just so you know, the word “sometime” is not concrete enough…..for Aaron.
He stood there silently, looking at the clock and processing the vague word, “sometime.” 
“8:00?” he asked.  
We left the house at 8:00.
Last week Aaron’s Paradigm driver, Lisa, had texted and told me that she would be a little late with Aaron’s pick-up.  As Aaron and I sat in the parking lot waiting on Lisa to arrive, he was getting stressed because she wasn’t there yet.  I told him that Lisa had texted me and that she would be a few minutes late.
“A few?” he questioned.  “What does that mean?”
“Well, I don’t know EXACTLY, Aaron,” I answered.  I reminded him about things like other’s schedules…..traffic…..car problems…..trains.
Aaron was silent for a minute.
“What time?” he asked. 
I guess he thought I hung my head because my neck hurt.
Yesterday morning he kept asking if Jackson could ride with us in the van to meet Aaron’s group.  I had to think about my morning before I answered EXACTLY that Jacks could come.  So several times after Aaron asked me this same question, I told him that Jacks could probably come.
Just so you know, the word “probably” is also not concrete enough……for Aaron.
“Stop with the probably!” he finally informed me.
And that is EXACTLY what I need to remember with Aaron.  Stop with the probably!  No probably for concrete Aaron!  
EXACTLY!!!

Can’t You Be Nice?


Aaron stayed home yesterday because he had three seizures during the night.  I let him sleep in so that he could recover.  He got out of bed, drank some coffee, and took his meds along with some pain reliever for his headache.  I needed to make a trip to Sam’s but I wouldn’t leave him at home by himself, so I asked him if he felt like going with me.  He jumped at that opportunity, seeing visions of a cart full of items that he wanted…..not paper towels and toilet paper and boring meat, for sure!  And the offer of eating lunch there was too good to pass up, so off we went, listening to music and listening to Aaron talk about everything he saw…..of course!
We had settled at our table at Sam’s with our pizza slices and glasses of water, when I decided to take a picture of Aaron.  He agreed to the picture only if I let him pose as a Star Wars clone.  He told me to send the picture out with the explicit description that he was making the face of a Star Wars Republic Commando clone…..the PC game, not the movie.  OK, got it, Aaron!  
He then asked me if I was going to use the shopping cart that was big and flat…..because then he could ride on it like Barb and Brandy let him do when they take him to Sam’s.  I told him no, I was not using that flat cart, and he was disappointed.  He continued to ask me about this as we talked during lunch, pointing out how others were using the big flat cart.  But they weren’t pulling a big Aaron on their flat carts…..which didn’t matter to Aaron at all.  He didn’t think it would be at all unusual for him to be pulled on the big flat cart…..like Barb and Brandy do.  
We finished our lunch and then walked toward the carts.  Aaron decided to try one more time to change Mom’s mind, asking me again if I would get the big flat cart for him to ride on.  Again I said no.  “Mom?” he asked.  “Can’t you be nice?”
So I reminded him that I had been nice to let him come with me.  I had been nice to get him pizza for lunch.  I was being very nice, I told him.
And he quickly responded, “Well, can’t you be nice a SECOND way?”
I laughed as I walked and Aaron lumbered beside me on our way to claim our cart…..our normal cart.  And in that normal cart we placed some items that made Aaron very happy…..and walking made him feel better.  He really didn’t need the big flat cart at all. 
 This morning, as I prayed, I thought about the comment that Aaron made.  Sometimes I question God’s direction in my life…..what He allows and what He takes away.  In my own way, I am Aaron.  I don’t always recognize how “nice” God is to me because my eyes and my thoughts are instead on the things that He is not giving me.  I want Him to, in a sense, pull me along on that big flat cart…..doing everything my way.  
God, can’t You be nice to me a SECOND way?  I know You have done this for me and that for me, but I also want this other thing.  I think I NEED this other thing.  But God in His wisdom says no….and if I but look, I’ll see that His plan for me, a normal cart, can also be filled with many wonderful items and blessings that I might have missed had He given me that other cart……that SECOND way that I so wanted.  
Help me, Lord, to stop asking You to be nice to me a SECOND way, and to be thankful and trusting for the way that You have chosen for me each day. 

What Wasn’t and What Was and What Should Have Been


We’ve had a few interesting days with Aaron.  I think the older that Aaron becomes, the more evident his autism behaviors are.  And boy, we’ve seen some good ones recently!  I’m using “good” in a loose sense.   I’ve never been the kind of mom that tries to blame my child’s poor behavior on anything other than his willful disobedience.  “Yes, I know my child destroyed your flower bed, but he’s just tired.  He didn’t have his nap today.”  Nope, that was not me.  But with Aaron, we see more clearly with each year that his behaviors are indeed the result of something that we sometimes barely understand and can rarely control.  Of course, some things he does are very funny or amazing…..but not always.  
Take the fishing trip that wasn’t.  Rosie’s mom had told me about Fishing Without Boundaries several weeks ago, but I dismissed it as something that Aaron wouldn’t want to do.  He doesn’t like to fish…..he doesn’t like being out in the heat all day…..he doesn’t like crowds for long periods…..he doesn’t like his routine messed up.  I’m not being negative.  I just know Aaron.  But there’s one thing I didn’t take into account…..Rosie.
I was in the garden a couple weeks ago when Aaron came home from his day group.  I looked up when I heard the back door open and heard Aaron’s unmistakable, “Mom!!”  I looked up to see him marching resolutely across the yard toward the garden….and me.  “Mom!!” he repeated.  “I’m going fishing!!!”  He was so excited, and I was so surprised.  It took me awhile to figure it out, but I eventually learned that Aaron wanted to go to the Fishing Without Boundaries event at El Dorado Lake.  
Over the next couple days I talked to Aaron about the logistics of that day, including the very early morning.  I was positive and upbeat, and Aaron was determined to go on this fishing outing……..not because of his love of fishing or the lake or the great outdoors, but because Rosie would be there.  He wanted to spend this day with Rosie, doing what Rosie enjoyed.  So we filled out the form, ordered his tee shirt, and sent in the money for his big weekend.  
I saw a little crack in his armor when, a couple days before the big day, he began to worry about the very early time to meet his ride.  So I told him that we would take him to the lake and could go later in the morning with no problem.  All seemed well.  But on Friday, the day before the fishing trip, he woke up rather worried.  He told me that he wasn’t sure about the fishing…..he wasn’t sure about being gone all day……he wasn’t sure about not being home doing what he enjoys.  In other words, he had decided not to go.  I knew it for sure, but I didn’t want to give in too easily.  Yet as we talked, and I saw him getting tense, I knew I had to give him an out….or we would all pay.  So I told him that he didn’t HAVE to go fishing.  Everyone would understand.  
But the only person that Aaron worried about disappointing was Rosie.  I felt badly for him as I saw the struggle that he was having.  He wanted to be with her, but he didn’t want to leave his weekend routine.  He came so close to going, and it was really disappointing that he didn’t quite make it…..but maybe next time, although we have said that same thing for years about various trips and events to which he says a definite, “No!”
On Saturday, Aaron said, “Do you think that Rosie misses me?”  And I felt sad for him.  Then later, “Was it my fault that I didn’t go?”  I knew he was struggling with his decision.  And finally, in the evening, he said, “I feel like I betrayed Rosie.”  That one made me really feel sad, but we talked about it and I could only hope that he felt some peace about his decision.   His routine and his way of doing life is the most important thing in the world to him…..but when he has a reason, a big reason like Rosie, to interrupt his routine….it’s so tempting and he wants so much to be able to make himself comply.  Then he struggles when he just can’t do it.  And we can’t force him to go…..or take away the guilt he had about not going.
So that’s the fishing trip that wasn’t.  And then we had the friends that were…..as in, were here for a visit or to join us for supper.  But Aaron wished that they were also friends that weren’t…..as in, weren’t here for a visit or to join us for supper.  This is when his autism becomes frustrating……humbling (to Gary and me)……and oh, so embarrassing!
First came Kristi, our sweet friend that we have known for 20 years.  Kristi’s dad was our pastor when we lived in Leavenworth, and our families became good friends.  She is now a missionary in France, and is here in the states for five months of furlough.  She is in the Wichita area for awhile, and so she spent Thursday night with us.  Aaron greeted her at the car when she arrived, even carrying her heaviest suitcase upstairs to the bedroom where she stayed…..as he complained all the while that he was not her servant.
He was up and down emotionally with her for the rest of the evening.  He wanted us to watch Wheel of Fortune with him, which we did…..though we turned it on a little late.  He wanted us all to take Jackson on a walk, even handing Kristi the leash to hold.  And he walked a second time around the circle with just me and Kristi, minus the dog.  He would pop up at various times to talk to me and to Kristi, usually about a movie.  But in the midst of it all, he was also rude several times.  He informed Kristi that she was not his boss…..though she wasn’t being bossy…..or she was not his mom.  It’s like he needs to be in charge, controlling his world at home when someone else is there.  A visitor becomes an interloper…..an annoyance…..when Aaron’s schedule is disrupted.  One minute he can be chattering happily and the next he just might puff up and be very rude.  Kristi took it in stride, as our friends always do.  Gary and I are the ones who are the most affected.  Kristi understood and we talked the next day about it after Aaron was gone.  Still, it’s frustrating.  Explainable, but embarrassing.
And then there was Saturday, when I asked our elderly neighbor, Nora, to come over and have supper with us.  Nora is recently widowed, and on Saturday she found out that an assisted living apartment will be opening in one month.  She is overwhelmed with moving.  I felt like she needed company that evening…..some food and talking and laughter.  But there was Aaron, who for some reason has decided that he doesn’t like little Nora.  And he especially decided that he didn’t like Nora coming to our house for supper on this Saturday evening.
Thankfully, Nora can’t hear very well so she didn’t comprehend all of Aaron’s muttered comments.  But she heard enough to know that he was displeased with her being there.  One thing led to another, and by the time we sat down to watch Wheel of Fortune (of course!), Aaron had had enough.  It was not a pleasant scene as he fought over keeping the remote, paced the floor like a wild animal, and was very verbal.  Finally, he yelled at Nora with all his might and stormed outside…..where he sat in the mulch to wind down.  He sat under the pecan tree, where he never sits, but where he was more hidden and farther from the house…..and from his problems. 
Again, our friend understood…..but I knew she was hurt.  We were hurt…..and terribly embarrassed.  It was the worst display of anger toward a visitor that we had ever seen.  Aaron came in and out of the house, even watching the last few minutes of Wheel of Fortune from the kitchen, standing there gazing at the television but not talking to us.  When I walked Nora home, Aaron sat under the pecan tree still breaking mulch…..and glaring silently at me when I walked past him to go home.  Later that night, we were able to talk to Aaron about friendships…..about how to treat our friends…..about how we treat his friends.  I think we made some headway as we compared our friends to his special Rosie, and the importance of being polite and kind.  What if we were mean to Rosie, we asked?  That thought seemed to register with him.
But who knows what will happen when Aaron is once again pulled from his routine?  We might see when Kristi comes back this Thursday night, brave soul that she is.  Aaron wants everything to stay the same in his world, and he will react strongly to whatever disrupts that sameness…..whether it be an event or a person.  Aaron doesn’t care if he hurts with his words.  He just wants his life to be the way he likes it.  I can say that he is selfish, rude, inappropriate…..lots of undesirable traits…..but I can also say with confidence that he is autistic and that we see it more clearly with every passing year.  What registers with our brains does not register with his.  What we can control, he cannot.  If he fell down into a seizure, we would be so empathetic.  But when he falls into an emotional meltdown, empathy becomes anger and embarrassment.  Yet both scenarios are an evidence of his disability……and a struggle for us to always understand and handle correctly.
And I realize that I will always be that mom……THAT mom……who tries to explain his behaviors while wondering if I’m sounding like I’m trying to excuse them.  There’s a huge difference there in the two.  Explaining means we grasp at understanding.  Excusing means we dismiss with no repercussions.  But in explaining I feel that we sound like we we’re excusing.  It gets complicated.
So this morning Aaron got up very early for him.  He came up the hall and into the room where I was having my quiet time.  He just stood there behind my chair, looking at me, so I said, “Aaron, you need to go back to bed.  It’s just 6:00.”
“6:11,” he said with no emotion.
And another day with Aaron has begun, as I smile…..and see what the day will hold.

What I Would Have Missed


I was busy last night.  How many days could I start a story with that same simple sentence?  Gary and I are leaving tomorrow for Houston.  We get to spend the weekend with Andrea…..YAY!!!……and she is going with us to see Andrew in a race on Sunday…….double YAY!!!  You know how it is before a trip.  So much to do….so much to remember…..and since we have a caregiver coming in to stay with Aaron and Jackson, it seems to double my busy load.  
I was checking items off my to-do list while thinking of others that I had neglected to write down.  Scurry here, scurry there…….and I heard a loud THUMP!  I looked out of the bedroom door and saw Aaron standing there at the head of the stairs, looking in my direction…..his animal print blanket slung over his shoulder and his back-scratcher in his hand.  He had hit the wooden door of the linen cabinets there in the hall.  We had a little “staring at each other” session before I asked him why he had hit the door.  I knew he wanted my attention, but I wanted to hear his version.  He then told me that he was bored……and I then told him a few things about not hitting the door, etc., etc.
He lumbered down the stairs while I continued my packing and organizing……my scratching off the to-do list and adding to the to-do list.  Finally, I was nearly finished with what I had wanted to accomplish for the evening.  I thought about slipping down to my computer to catch up on emails and Facebook.  Important stuff, you know.  But I thought of Aaron.  I thought of the real reason that he had hit the linen cabinet door.  He wasn’t just bored.  He wanted some time with me.  That loud bang on the cabinet door conveyed much more to me that he was able…..or willing….to say.
By this time he had gone back to his room.  I found him sitting there at his desk, headphones on and movie playing.  Godzilla…..the old version…..1998.  I knew what I was getting into as I leaned over and asked Aaron if he wanted to play a game of Skip-Bo.  I was going to hear all about Godzilla……every detail.  What kind of monster….where did he come from…..how he breathed fire……what his feet looked like……and his tail……and his ugly face…..
Aaron was so happy when I asked him if he wanted to play Skip-Bo.  There we were, him talking rapidly……about Godzilla……while I shuffled the cards.  We soon were playing our first game and I was feeling relaxed.  I ignored my tablet nearby and my phone close at hand. I simply focused on Aaron.  He talked and talked about a variety of things, happily and freely, as we played cards.  
And then he stopped and he looked at me, making direct eye contact and lowering his voice while he said, “Mom, do you know what Rosie is to me?”  Rosie is Aaron’s special friend.  So I just stopped and I looked back into his blue eyes…..and asked him to tell me what Rosie is to him.  
“She talks to me and she agrees with me,” he began.  He proceeded to tell me that he and Rosie say things to each other, like when they went to Burger King, he said…..and Rosie pointed something out to him as they were leaving the restaurant.  He told me that his other friend, Shauna, doesn’t do that.  She doesn’t point things out to him like Rosie does, and she doesn’t ask for Aaron’s opinion like Rosie does.  Shauna is sweet and wonderful, but Rosie is……well, Rosie. 
Aaron continued trying to describe Rosie.  “She makes me feel great,” he said.  He spoke from his heart, not full of excitement but full of softness.  This whole thing was so unlike Aaron.  He wasn’t being loud or silly or using words he thinks are funny but aren’t.  He was sincere, and he was so normal.  Please don’t take that the wrong way, but Aaron rarely speaks like this.  I was just treasuring this moment and sitting there in amazement, hoping it would last awhile longer.
“Rosie and I,” he said, “we have a bond.”  There I sat, wondering what my face conveyed.  Then Aaron said, “Mom, what’s a bond?”  And then my face conveyed amusement as I laughed.  He was repeating what he had heard, but immediately showed that he didn’t really understand what on earth a bond is anyway.  He just knows that he and Rosie have one.  So once again I talked to him about special friendships, how sometimes we just click with someone, and that special bond is formed. 
“You know what?” he asked.  “I’m older than her and she still likes me!”  We laughed together this time and soon the moment was over.  Aaron had found my little plastic rooster that Mary Beth gave me.  It has special meaning and I keep it on my kitchen window sill above the sink.  Aaron had picked it up and was comparing the rooster’s feet to Godzilla’s feet……and soon was trying to sneak the rooster into his pocket so he could take it to his room, never to be seen again.
I told him no…..that the rooster was mine.  “That rooster is dumb for you but it’s cool for me, Mom!” he laughingly replied.  Yep, old Aaron is back.  Sincere, heartfelt conversation was over.  But I was still relishing that time, and enjoying the remainder of our game.
And you know what else I would have missed if I had not stopped for this time with Aaron?  I would have missed this.
 
See how Aaron arranges his cards in his discard piles?  Isn’t that so cool?  He laughed when I wanted to take a picture, and he was also quite proud that I thought this was important enough for me to want to photograph.  
Important enough to photograph…..and important enough to take the time to really see and to really listen.  I get tired, especially at night.  I want “me time” as much as anybody…..and I get plenty of that, trust me.  But last night I was once again reminded that it’s so worth it to stop……to focus on Aaron…..to listen and to absorb what this special son of mine is saying and thinking.
He teaches me……he delights me……he challenges me.  I need to accept it all……not to brush it off in the midst of my busy schedule or in my tiredness or frustration.  And when I do take the time, usually when it’s least convenient, is so often when I get those special blessings…..those glimpses into his heart, where he is real and sincere…..beyond all the gruff and the loudness.
God teaches me so much through Aaron….if I but take the time to listen.

Tennis Elbow?


I think the word that would describe our weekend with Aaron would be “fixated.”  In other words, “stuck.”  By bedtime last night, Gary and I were full to the brim internally and our ears were exhausted from all of Aaron’s talking.  How could he possibly have so much to say over and over about the Predator/Alien movie he’s watching?  And about his elbow?  
He woke up yesterday with a sore elbow.  “Mom, my elbow is sore,” he told me when he came downstairs after getting out of bed.  “I think I hurt it in my sleep.”  We discussed all the possibilities……or some of them…..as to why his elbow might be sore.  He was sure that he had slept funny, but it seemed more than that, so I told him about how it might be inflamed from repetitive motions……as he stood there bent over, rapidly rubbing his hands together in excitement because we were talking about HIM……and he asked, “What’s repetitive motion?”   So I pointed out the obvious one he was doing at that moment, and he grinned as he rubbed his hands together even more.
And then I made a mistake.  I told him that sometimes this condition is called Tennis Elbow.  I knew that I had just added a heap of confusion to Aaron’s literal brain as I lamely sat there trying to explain Tennis Elbow.  Of course, the first thing Aaron said after my expert explanation, was:  “I don’t play any games!”  Meaning games of tennis, of course, and so I had to back pedal and explain my explanation…….and finally I just told him that his elbow was sore and we didn’t know why, but we did know that it wasn’t from tennis……so just forget Tennis Elbow.  
I poured myself another cup of coffee.
He spied the Sunday coupons and he hovered over me as I looked through them, checking to see if I wanted to buy another Sunday paper.  He wasn’t thrilled about the number of coupons he had to cut, reminding me of his sore elbow, so  I asked him if he wanted me to remove the ones that I knew I wouldn’t use.  
“No!” he replied.  “I want to cut them!”  I knew that’s what he would say.  I hadn’t been able to secretly remove them before he came downstairs, so now he had more to cut than usual……but cut them he would, sore elbow or not.   I asked him if he wanted me to cut them today as he mentioned his elbow again, but he told me that I don’t cut them right and so he would do them…..even with his sore elbow.  And I knew that his elbow was going to be one of his fixations on this day.
Another cup of coffee was in order.
The morning and the rest of the day was also consumed with his Alien vs. Predator movie that he was watching.  Gary and I have watched clips, listened to endless explanations of scenes, tried to answer questions, told him why we don’t care for that movie, explained that we don’t plan to watch that movie with him……and wondered why we let him have those movies.  I’ll admit that it’s hard to find good movies that he enjoys, and movies that don’t have some language are next to impossible to find.  
“Mom, they shouldn’t use cuss words.  They should just use WORDS!” he said.  He’s so right, and I question again the wisdom of some of our choices for him.  He enjoys some really good movies, but he also likes the alien ones.  On Friday, his group went to see Dolphin Tale at the theater.  Sadly, he was not impressed with this good movie for some reason.  He thought it was a “young child’s movie.”
He told me that some of the clients were crying after the movie was over.  I don’t know about that, but he was also not impressed with those “cry babies,” as he calls them.  But I told him that sometimes this is a sign of a really good movie.  He immediately connected to what I was trying to say.  
“But Alien vs. Predator is not like that?  It’s not a cry movie?” he asked.  I agreed, but he was still not convinced that Dolphin Tale was better.  And he continued with his alien fixation for the remainder of the day.  Exhausting.  No amount of coffee could compensate for that.
Aaron relaxing in the mulch    
I took him out to a couple stores in the afternoon.  At each place he greeted the staff with this:  “I have a sore elbow!”  And then he stood there waiting for their response as they just looked at him in discomfort, unsure of what to say, and I tried to fill in the blanks.  But nothing stops Aaron, and he continued to tell them about his elbow and why he thought it was sore and repetitive motion and sleeping wrong and if he holds it like this it doesn’t hurt and if he holds it like this it does hurt…..
It’s one of those situations where I just look at Aaron in both amusement and embarrassment, honestly……and I am once again reminded, with great confirmation, that my son has autism and has no filters.  DUH!  Don’t I know that by now?  Well, yes, I do……but seeing it in full force like this never ceases to amaze me.  It amazes those poor store clerks as well.  
And laughter…..oh my goodness, does he make me laugh!  “Mom!” he said on the way home.  “Today I sneezed in the bathroom.  I got that sneeze thing on the mirror!”  
Gross.  I need to get my nerve up today to go in there and clean it.
Aaron relaxing while watching a little football
 
He laughed as he watched a court scene on television and as always, was amused as the lawyers yelled, “Objection!!”  And the judge responded with, “Sustained!”   “Mom?” he asked.  “Do they use scientific words in the courtroom?”
Speaking of using words……which Aaron does with great expertise…..sometimes…..I was reminded of how blunt he can be.  Again, no filters on that boy.  Like the day he got frustrated with me and then responded with, “Mom, did you notice how I stopped myself from saying ‘jerk’?”  In some strange way, that required praise from me.
So last night before bed, Aaron said, “Mom, Barb had some Jolly Rogers candy at Paradigm!”  
“Jolly Ranchers?” I asked with a smile.
“Yeah!” he affirmed.  “Jolly Ranchers!  She gave me some.  She said her children don’t like them.  I told her that her kids are weird.”
Thankfully, Barb understands Aaron…..and if he did indeed say this, then I know that she took it in stride.  But I still explained to Aaron why he shouldn’t say that Barb’s children are weird.   I didn’t say it was the pot calling the kettle black.  I wouldn’t want to hurt Aaron’s feelings.
Besides, he would just say that he doesn’t have a pot or a kettle.

Sigh.

The Funny and The Sad


It’s been a mixture of funny and sad with Aaron over the past two days…..well, over the past 27 hours and 22 minutes, to be exact.  But who’s counting, right?  Oh……well, yes, Aaron does.  Count, that is.  So he would appreciate it if I would as well, thank you.  
Aaron burst in the door from the garage yesterday when he came home from his day group.  He saw me right there in the half bath/laundry room as he shot through the door.  Of course, he didn’t say hello or hi Mom or anything close to resembling a greeting.  Instead, just as he slammed the door and saw me folding laundry, he loudly said, “Mom!!  King Tut is a real person, right?!”
And so began our late afternoon and much of our evening, as well as this morning.  King Tut this and King Tut that.  Can you tell that he’s watching a movie called The Curse of King Tut’s Tomb?  I don’t recommend it.  It’s beyond lame……but it suits Aaron just fine, because King Tut comes alive and saves everyone from the monster.  The monster with wings. 
Which prompted Aaron to also ask, “You mean King Tut is a humaning being?  He’s not a monster with wings?” 
And this morning I had to watch a YouTube clip of this beyond lame movie.  I had to type Google Videos and then type The Curse of King Tut’s Tomb…..just right, because Aaron was standing over my shoulder, observing my every move.  As we scrolled down to find the right clip, Aaron saw it.  “YES!!!!  That’s it!!!!  It’s the 1:41!!!!”
Good grief, Aaron…..remember my ears close by.  And the 1:41, for you who don’t know or remember……..how could you NOT??!!…….is the length of the video.  Aaron remembers the length of video clips even better than he remembers the names.  Anyway, I endured the video clip for 1:41.  It’s pretty awful.  In fact, I think it’s under awful movie clips on YouTube, but Aaron would strongly disagree with that.
Tonight, he told Andrea on the phone about this classic movie and she told him that she would watch it with him the next time that she “comes over,” as Aaron says.  But then she added that we should make it a FAMILY movie night and all watch it together.  I may suggest that she find a new family.  Really, the movie is that awful.  That girl is in so much trouble.
Back to Aaron’s return home yesterday…. he also told me about teasing Ashley at his day group.  He seems to get great delight from teasing her, which isn’t usually a good thing with Aaron, as his teasing can be annoying and even a little mean.  The more fun HE is having, the less fun YOU are probably having.  I’ve been trying to determine if Ashley is the same Ashley he knew at a school here years ago.  I asked him yesterday what color hair Ashley has.
“She has the color of Goldilocks and the Three Bears!!” he happily said.  Of course, he can’t just say blond. 
 
On his way to bed later, as I fixed the percolator for the next morning, Aaron said he was going up to his room to get ready for bed.  He walked part-way through the family room and I heard him stop.   “Mom, is it going to rain tonight?” he asked.  This before-bed information is very important to Aaron. 
I told him that I wasn’t sure, but maybe later it would rain.  He took a couple more steps, out of my sight, and then I heard him stop again.  Pause.
“When is later?” he inquired. 
 Oh dear Aaron, you who must have an exact time for everything…..
I told him that I wasn’t sure of an exact time when later would occur, but that it just might rain…..sometime…..later.
Pause.
“Midnight?” he questioned.
When you’re in Rome…..and when you’re in Aaron’s world, do as Aaron does.  And thankfully, since I had recently looked at the radar, I could safely tell Aaron that it would not rain at midnight…..that it would rain sometime after midnight, if it rained at all……but I very carefully did not use the word “LATER” again.  Sigh.
And he was satisfied.
It was only a short time later, just after he had fallen asleep, that I heard him having a seizure in his sleep.  I stayed with him until it was over, and I prayed when I laid back down that he would not have a night full of seizures.  And he didn’t have another one……and I was so thankful……even as that little cloud of sadness hovered over my head.
We had more funny times this morning.  Aaron talked and talked about the The Curse of King Tut’s Tomb again, and of course we watched the YouTube clip.  He followed me out to the garden, where he talked more while I snipped okra off the stalks and picked a few tomatoes.  And where he breathlessly told me about Rosie eating some of the tomatoes I sent to Paradigm yesterday.
“Mom!!  Rosie ate tomatoes RAW!!”
He was so relieved when I told him that this is how we usually eat fresh tomatoes from the garden……and I learned that to him, eating them raw means that she didn’t wash them before eating them.  I already did that, I told him, and he was happy.
Then in the afternoon, while at the theater with his day group, he had another seizure…….a rare afternoon seizure.  He probably fell asleep in his chair in the dark, and then the seizure came.  Poor Aaron.  And worry and that hovering sadness was pushing the funny out of my sight.  
He was able to stay at his day group.  He called me and we talked about his seizure.  He was calm about it.  Later, I heard the door open when he got home, but he didn’t have the gusto of the day before.  He walked slowly across the kitchen and came downstairs to find me.  He was much more somber than yesterday as he walked over to me and told me that he didn’t feel very good because of his seizure.
“I guess I didn’t have much fun time in the theater because of that,” he flatly said.  
He made my heart hurt.  I agreed that it wasn’t much of a fun time for him, but that I was glad he was better now.  I was trying to soothe my own pain more than his.
“Yeah,” he said.  “I guess watching a movie today wasn’t very much fun.”
Poor Aaron, indeed.  He loves going to the movies but today he didn’t have much fun time there, for sure.  Yet it’s amazing how quickly he can bounce back…..how soon he was happy again, bending over and rubbing his hands together when I was talking to Andrea and he was trying to tell me what to tell her until I finally just let them talk……and the two of them talked the whole time Gary and I ate supper.  
Aaron is amazing in many different ways, but his ability to keep on going even when his day wasn’t much fun is a lesson for me every time.  And even more amazing is that even though he is the reason for my sadness at times, he can also turn right around and be the reason for my joy.  He can be so much fun!  
The funny and the sad, all wrapped up in Aaron.
A lot sure can happen in 27 hours and 22 minutes.

We Eat Lunch at 12:00


Gary has been visiting with Andrew in Indianapolis for nearly a week.  He got to go to the NHRA Summer Nationals and watch Andrew work, see all the fun races, and spend some quality time with Andrew.  I stayed home with Aaron.  He went to his day group for three of those days. Then over the holiday weekend, we went on walks at home and at Swanson Park; we went shopping a little; we watched Wheel of Fortune and played Skip-Bo; we took Jackson on walks; we went out to eat twice; and I got to listen to Aaron talk……a lot, as usual.
Yesterday and today I watched several hours of racing on ESPN.  I did things with Aaron in between races and at the end of both days.  I always feel guilty if I spend too much time telling him that we’ll do something later as I sit there doing my own thing, but he was happy with his games and his movies, and also sitting out in the mulch relaxing.  He stayed outside quite a long time today, consumed with his thoughts as he broke mulch in the unique way that he does.
 
Yesterday there was a two hour break in the middle of the day, from 2:00 until 4:00, when there was no racing being broadcast.   I had walked into Aaron’s room the night before and found him finishing one of his Lord of the Rings movies.  He was watching the credits……he always watches the credits to the very end…..because credits ARE a part of the movie.  I asked him if he wanted to go out to eat the next day during that break, and he happily said yes.
 
The next morning, I let him choose the restaurant and he immediately asked if we could eat at Chili’s.  I said yes, and then told him that we would leave a little after 2:00.  He just stood there thinking about that fact. 
It wasn’t long before he found me in my bedroom.  “So if we go to Chili’s,” he asked, “what time would it be?”  I repeated that we would leave shortly after 2:00.  He was pondering my response as he walked away.
Soon he was back.  “Mom, I wondered if you’d want to go sometime after 12:00.”
“Why?” I asked…….although I was pretty sure I knew the answer.
“Cause that’s when we do lunch here at the house,” he answered.
So I explained once again the fact that I had a two hour break in the racing schedule, but it was from 2:00 to 4:00. 
12:00 was not a good time for me to go eat lunch, I told him.
And once again he solemnly pondered my answer, then turned and walked away.
But not for long!  I was fixing my hair in the bathroom when he walked in, his face serious.
“How ‘bout we go at 12:00?” he asked hopefully.  “That’s lunchtime.”
I reminded him that I could only go after 2:00, and I also assured him that lunch after 2:00 would work out just fine.  I could tell he wasn’t convinced, but the thought of eating at Chili’s was too good to pass up……even if it WAS at the weird time of 2:00 and not 12:00, like lunch should be.
And Aaron, with his rigid sense of schedules, did go with me to eat at Chili’s just after 2:00……and he survived quite well.  He seemed to forget all about the time as he chowed down on his salad and his chicken enchiladas, and bemoaned the fact that I said no to chips and salsa.  
This picture was from our dinner today at Chili’s, where I DID let him get chips and salsa.  
And Aaron, with his rigid sense of schedules, asked me soon after we got home what we were having for supper.
“Supper?!” I asked.  “I’m stuffed, Aaron, and I know you are.”
He agreed……but he said that supper was usually at 5:30 or 6:00, and so he was just wondering. 
Good grief!
Later we were playing Skip-Bo when Aaron asked what day Dad was coming home.  I told him that he would be home on Tuesday evening.
Silence.
Then it came…..
“Mom, what time will evening be?  10:00?”
And then he asked why I sighed.  Ha!

I Worked on a House!


As I wrote in my last blog, Aaron had a rough seizure day on Tuesday of this week.  When he made it downstairs that morning, he said, “Mom, I don’t feel good.  The reason was……I’m guessing was……I couldn’t sleep well last night.”  Thankfully, he doesn’t remember his seizures and so he was trying to understand why his head hurt and why he felt terrible.  He had another seizure later that morning.  His whole day was spent on the couch.
That night I played a game of Skip-Bo with him.  It was sad to just sit there and watch him…..so slow and clumsy.  He had a hard time holding the cards, and it took him a long time to think of the moves to make…..decisions which usually come quickly to him.  In fact, when we play Skip-Bo he is often urging me to hurry up.  But on this night he was really out of it.  I prefer the quick, sharp Aaron for sure……even when he’s trying to cheat! 
But on Wednesday he was well enough to go to his day group, and by Thursday he was fully back to normal.  On Thursday morning I took him with me to Chick-fil-A, where we got a free breakfast biscuit.  We brought it back to the house and sat at our table, enjoying every bite.  I was enjoying Aaron’s laughter, though, and his being back to his usual funny self. 
That afternoon, when he returned from his day group, he bounded in the house in his usual loud fashion.  He found me downstairs and as always, with no hello or any other greeting, he immediately said, “Mom!  I worked on a house today!!”  He then excitedly explained that he had gone with Brian, one of the staff, to work on one of Paradigm’s residential houses.  Brian is getting this new house ready for clients to move into, so Aaron was one that went with Brian to help.
Now helping in this fashion is totally out of character for Aaron, so I was surprised.  Surprised that Aaron went……surprised as he told me that he helped……and very surprised that Aaron was excited about it.  He told me that he helped Brian put up “fire detectors.”  And that he helped Brian by handing him tools.  And that he helped “tear carpet.”
“Mom!  We cut carpet with a slicer!!”  
Well, I know Aaron loved that because he always wants to help me cut vegetables in the kitchen.  You know…..a guy and a knife.  But this isn’t always a good mix with Aaron involved.  I asked Aaron if he liked all this house work that he did.
“Well, it wasn’t my favorite,” he replied.  “I’m not a house person.”
And I smiled……and smiled again when he saw me talking that night on the phone with Gary.  Aaron leaned close to my face several times while I talked to Gary.  “Mom!!” he tried to whisper……but not quite achieving that, as usual.  “Mom!!  Can I tell dad that I worked on a house?”  
So I let him tell Dad that he worked on a house, while I watched Aaron grin from ear to ear as he talked.  He paced the family room over and over as he talked about the “fire detectors” and the carpet and the tools.  It was fun to see……and I knew that Gary shared my surprise at this working on a house business that Aaron has rarely enjoyed before.  
Aaron had also told me that one of the other clients went along to help as well.  I was a little concerned when he told me that it was J who went, because Aaron and J often seem to have issues.  But Aaron said things went well between them, except that he added:  “Well, some of the time J and I were rowdying around.”
Now I wonder what Brian would add to that…..but I’m not sure I’ll ask.  I want to relish the thought of my new handyman Aaron, at least for a while.
And there was one more element to this working day that Aaron had.  Lunch.  Aaron’s favorite activity, by far.
“Mom!!  Brian took us to a Chinese restaurant!  We had soup that looked like it had worms in it……and parsley weeds!!”
Well, isn’t that the most appetizing meal I could imagine?  I know that Aaron will never be a promoter for a restaurant.  I’ll mark that off his possible job list.
He seemed to fully enjoy the wormy soup, though, and the egg rolls he told me he ate, because when I asked him later if he wanted some supper, he said, “No, I’m full.  That Chinese restaurant…..their food is BIG!”
Aaron, it’s not the food that’s BIG.  
Later, Aaron and I took Jackson on a walk around our back yard.  After all that BIG food, I especially wanted to take Aaron on a walk! 
We were near the end of our walk when Aaron sighed and said, “I’m tired after doing all that fixing!”
It’s hard being a house person, isn’t it, Aaron?  Hard for you…..but so much fun for me!

My Wormy Cucumber…..and Aaron


Last night was a seizure night for Aaron.  We are so thankful that he doesn’t have constant daily seizures like our friend’s son, Elijah, has.  I told Wendy this morning that I don’t know how she does it apart from God’s grace.  I know that each of us who know the Lord depend on His grace for the many circumstances that we face in this life.  Having a suffering child is tough.  When Aaron has seizures is when I feel most vulnerable emotionally.  His autism is high functioning, though in its own way debilitating, but he at least can function.  His autism makes him at times very frustrating and it causes him to be in trouble more than we like, both here at home and at his day group.  Or then he can also be very endearing and funny, even hilarious.
But his seizures……they make me sad.  They show me the seriousness of Epilepsy…..the danger.  I may be vulnerable emotionally on these days, but he is vulnerable physically.  And as his mother, that scares me….and makes my heart hurt. 
However, I know from experience over the years that I cannot dwell on the scary or on the negative, even when it comes to my son…..my first born.  Being aware is one thing.  Being defeated with constant worry is quite another.  And constant regret……that’s one thing that I very consciously pull my mind away from when it starts down that path.  I would love for Aaron to have a normal life, a job, a wife and children…but he doesn’t and he probably never will.  Living with regret over those issues only pulls me down and doesn’t do anything to help Aaron.  Plus it’s not honoring to God, Who wants me to trust Him in all things.  That means ALL.  Even Aaron, my son, and my hurt over his pain and difficulties. 
 
Aaron slowly made it downstairs this morning after his three seizures.  He tried to stay up and awake but as is typical for him, he laid back down on the couch and fell promptly asleep.  I covered him with his favorite blanket……the animal print blanket…..and he slept deeply until he had another large seizure.  Now he is awake off and on, talking about wanting his coffee that he missed this morning……will it still be hot…….when can he have it……worried that he won’t get to drink it……typical Aaron.
 
Earlier, while he slept and with me being unable to leave this area of the house for fear of another seizure, I stood at the kitchen sink.  I was washing the produce that I had gathered in the garden yesterday evening before dark.  Some tomatoes…..okra…..a red pepper……one pear that I was able to reach from our pear tree……and a few stray cucumbers.  On one of the cucumbers I saw the unmistakable signs of worms.  The brown, crusty spots on the outside of the cucumber were my clue, so I grabbed a paring knife and cut into the peel.  Yep, there it was…..a yucky worm……and then another nearby.  It was tempting to just throw the whole cucumber away, but I’m pretty thrifty about my garden produce that we’ve worked hard to raise.  There was still plenty of good left in that cucumber, so I washed the remainder and put it with the other healthy produce.  Aaron loves cucumbers, so he can eat it later.
 
This might sound strange, but Aaron’s a lot like that wormy cucumber.  He has his issues…..his “worms”……..that disrupt his life.  The autism….the Epilepsy……they have completely changed his life from what we thought it would be.  When placed beside his sister and brother, we can see a stark contrast.  Andrea, a scientist and geneticist in a major lab……and Andrew, working on a professional NHRA pit crew.  Their lives are dreams come true for both of them.  We love hearing about their work, even when we don’t understand half of it.  It’s exciting and fulfilling for them.
Aaron is like that cucumber, yes.  He has some chunks removed……some expectations that we had for him that had to be removed.  But he has amazing value if we but stop and look.  God does NOT create mistakes.  Aaron has tremendous worth.  He draws us to God in ways we probably never would have been drawn otherwise.  He keeps us humble.  Oh, does he ever!!  He keeps us at times bowed down with worry or frustration or embarrassment.  But listen to the verse God gave me this morning:
“But You, O Lord, are a shield about me; my glory, and the lifter of my head.”  (Psalm 3:3)
I love how God gives me what I need, when I need it, from His Word.  He lifts my head to look not only up to Him, but to look at Aaron with new eyes……eyes of faith and trust in the God Who loves Aaron and loves us.  God has a plan for Aaron that is every bit as important and amazing as the plan He has for Andrea and Andrew.  We just don’t always measure Aaron’s value that way, but God does.  And He reminds me on these days that I need to as well.
Aaron……my wormy cucumber……just in this little area of my house, God has once again spoken to my heart.  
Friend who is suffering today, never doubt God’s plan and His love for you.  Let Him be the lifter of your tired head.  He does care…..He does have a plan……for all of us.
Including my wormy Aaron.  My perfect Aaron, with lots of good in him that God is using.