Category: Adult Autism

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

A Time Change……And A Change of Time

Some of you may remember this post of mine from Facebook a few weeks ago:
          We need to change Aaron’s pick-up time for his day group from 10:30 to 9:30. We may as well have asked him to scale Mt. Everest in shorts and flip-flops…..go swimming in hot lava….play in a den of rattlesnakes…..sleep with a skunk…..walk on hot coals across America….. Get the picture? This could be a tiny bit difficult.
His new pick-up time was to begin this past Monday……right after setting our clocks back one hour on Saturday.  Oh boy!  A double whammy for poor old ‘I like things the same and I don’t like change and I like my clock to stay the same’ Aaron.  To say I was dreading it was an understatement.

I broke the news of the “fall back” time change to him on Saturday afternoon.  “Oh brother!” he said as he turned and went up to his room to ponder this complexity of life.  The extra hour of sleep meant nothing to Aaron.  Order in his world is all that matters, and this time change twice a year is full of disorder.  Not to mention all the changing of clocks!

He and I were playing SkipBo that evening.  We finished at 10:44, which was really 9:44 if the clocks had been set back……but was still 10:44 on most of our clocks because we hadn’t changed them.  Aaron, though, was already operating on the new time.  I found this out when I started putting the cards away and said I was ready to go to bed.

“If it’s 9:44 right now, maybe we should stay up now,” he said as he watched me put the cards in their box. 

“Why?” I asked. 

“Because it’s NOT 10:00!!” he not-too-patiently explained to me. 

“Well, it’s really 10:44 but in the new time it’s 9:44,” I began to explain. 

But nope, it was already a done deal to Aaron.  It was 9:44 now in his head, and he will not go to bed before 10:00…..new time, not old time.  Old time 11:00……new time 10:00.   9:44…..10:44……never mind.

 
The next day he realized that the digital clock by his desk had not been changed yet.  It’s a little difficult to set, so Aaron depends on me or Gary to do it. 

“Mom!” he said.  “The clock by my desk…..it hasn’t been changed behind yet.”   I hear that statement nearly every year, and it never gets old.  I would never think to describe our time change that way, but Aaron does.  Fall back……fall behind……he does remember.

Our other huge hurdle was to occur on Monday, when we would meet his group an hour earlier.  Another time change…..of a different sort…..but a change of time regardless.   UGH!!! 

Gary had suggested that something powerful might work to ease Aaron’s transition into this dreaded new pick-up time.  Something powerful….like sausage biscuits.  So on Sunday night I casually asked Aaron if he would like to leave early enough the next morning to run into Quik Trip to get a couple sausage biscuits.  He casually and quickly answered yes……and I nervously told him that we would need to leave around 9:10.  He didn’t bat an eye.  I relaxed…..just a little.

He was up early on Monday morning, and I realized that this weekend time change would possibly work to our benefit.  Aaron waking up earlier than normal was just what we needed with this new pick-up time.  Wow!!  Perfect timing for a time change after all!!

We had a few initial bumps that morning.  Some name calling…….almost yelling from Aaron…..a couple refusals.  But no throwing of anything breakable……no ripping up of special papers…….no bending his glasses.  And when I went in to tell him that it was nearly time to go, he was compliant.  Another wow!

We left the house without incident and got to QT in time to get his biscuits.  We waited…..and waited……and waited some more.  After a long wait and a few texts and calls, I learned that there was a miscommunication…..and that the new time would start the next day.  Aaron’s ride came, but we had waited an hour.  On most days, Aaron would have been beside himself…….frustrated, angry, tired.  But not that morning.  He was just fine as we sat there watching birds and listening to music and talking….of course.

And all this week, Aaron has been wonderful about the new time that he meets his group.  No anger or complaining or frustration……at all!!  This is truly a miracle.  I can only explain it as an answer to prayer, for I know that Gary and I were praying about it, and I know that many of you were praying, as well.

So thank you for the prayers……and thank the Lord for the timing of this huge change in time.  The clocks “changing behind,” as Aaron says, have been a blessing indeed!

The Bible verse that says our times are in His hands has taken on special meaning to me this week!

 

 

Stability

Now there’s a good, solid word for you……stability.  I believe that all of us crave stability even in the midst of changes in our lives.  Some changes are exciting……new friendships, marriage, a new job, a new house, new baby.  Yet even in the midst of these positive changes, we desire an inner stability….a steadiness in our lives at the core of our being.  If we find ourselves facing unhappy changes, then our inner stability can be threatened and we can become very unbalanced.

I remember losing my balance a couple years ago on our stairs in the middle of the night as I let our dog out to go potty.  I hung on for dear life as I rocketed down the stairs after losing my balance.  Our thick wooden door at the foot of the stairs was my stopping point, my shoulder slamming into it full force.  That instability resulted in major shoulder surgery with months of recovery and rehab, and still today I have a shoulder that will never be the same again. 

I know a lot of people facing instability in their personal lives today…..we all do.  I just heard last night about a dear 33 year old mother of four that I know who had a major stroke on Saturday.  I’ve had several conversations in this past week with parents who are terribly hurt and worried about wayward children.  We and our other neighbors are helping our little elderly neighbor, Nora, move to assisted living after losing her husband to cancer in May.  A year ago she never dreamed any of this would be happening.  Actually, none of us knows what a day will hold for us when we climb out of bed in the morning, do we?

These kinds of instability, and so many others, can rock our world.  We can be shaken to the very inner parts of ourselves.  But I also know that even when we are surrounded by so much instability, we can…..deep, deep in our souls…..have a constancy that never changes and is never shaken.  Of course, I’m referring to our relationship with God.  When you have a personal relationship with the One Who is always constant, then you know that you can lean on him when life becomes unbalanced, for He never shifts or changes. 

The first part of Isaiah 33:6 jumped out at me this morning:  “He shall be the stability of your times.”  I know this chapter is talking about the future, but I also know that we can apply this truth to our lives as believers right now, today, because it’s a truth about God that never changes.  What are your times?  What are my times?  What times are we each living in at this point in our lives?  Whatever it is….wherever we are…..if we know the Lord, He will be the stability of our times.

And I think of our Aaron, who in so many ways forces Gary and I to fall back onto the stability of God.  Aaron’s Epilepsy and autism are issues that we deal with every day of our lives…..and just when we think we’re somewhat coasting along in our version of normalcy with Aaron, something changes.  It could be a behavior or a health issue, but change is fairly certain to be constant with Aaron….if that makes sense. 

Gary and I were slapped in the face with this reality on Saturday night.  Aaron had one seizure during the night before, which is not at all unusual.  He has had seizures in his sleep for years after enduring all sorts of other seizures, day or night, during his young years and into puberty.   We have grown accustomed to rarely ever seeing a seizure when Aaron is awake…..except for one at the theater with his group in September and one at the YMCA a few weeks ago…..and then again Saturday night.

Gary and I were watching the World Series, and Aaron was sitting in Gary’s desk chair talking to us.   I looked down at my notebook on my lap, and in two seconds Gary called my name.  I looked up to see Aaron having a seizure, out of the blue and totally unexpected.  Gary was able to keep him from falling out of the chair, and when it was over and Aaron was a little lucid, we eased him onto the floor.

Aaron was conscious but he wasn’t with us.  His eyes were wide, his arms and hands kept lifting up awkwardly as if he was reaching for something, and he couldn’t speak.  He tried to speak, but all he could manage was a smile.  That was pretty heartbreaking.  Finally he was able to muster one word, with effort.  You can guess what it was.  “Mom?” he said.  I had to smile to keep from crying.  Aaron must say “Mom” at least a hundred times a day…..or so it seems…..so it was fitting that this was the first word he was able to say. 

We kept him with us while we watched the game.  I tickled his back, which he loves, while he recovered.  Soon he was talking again about aliens and wanting to go to his room to watch his alien movie, which we reluctantly let him do.  It’s just that we have this fear now…..that started a few weeks ago…..as we see him edging back into sudden daytime seizures while he’s up and around. 

On the next day, Sunday, we let him sleep.  He woke up too late for Gary and me to go to church, but we wouldn’t have left him alone anyway at that point.  We later took him with us to Sam’s, which he loved, and on the way home I told him that I would fix the Lasagna that he had been wanting.  That made him very happy.  I invited Nora over for lunch and to watch some football, not knowing if Aaron would be nice to her this time or not…..but he was perfectly nice and funny…..and we had a wonderful afternoon.  Of course, we had to endure watching some of Aaron’s Mountain Monster show that he was watching before we could change the channel to football. 

For the rest of the afternoon, after Aaron had gone back up to his room, he kept bounding down the stairs and coming into the family room to ask Nora some important questions.  Questions like:  Would you eat an alien egg?  Did you know that those aliens have concentradik (concentrated) acid in their blood?  Why is there a Queen alien?  Have you seen aliens hang from the ceiling?   Would you watch the movie, Alien?

With each question, Aaron would bend over and rub his hands together with delight…..and Nora would laugh and laugh.  He didn’t really care about the answers to his questions.  He just wanted to talk and to share his alien discoveries and to be the center of things…..which he is without even trying.

Later, he and I played Skip-Bo.  You would never have known he had such a strong and unexpected seizure the night before.  Life with Aaron has returned to normal.  Just now he came downstairs carrying a little dirty carrot from the bucket of garden produce that I haven’t yet washed.  He was so excited to hold that carrot and to ask questions about the carrot….and to let Jackson sniff it, of course.  Typical Aaron. 
 

 
We have the continuity…..the stability…..of who Aaron is mixed in now with that cloud of fear concerning his unexpected seizure activity.  Instability is at the back of our minds.  I know that’s to be expected because we love Aaron and we are concerned for him.  But I’m so thankful that we can lean on God when we feel ourselves getting unbalanced with worry, and know that He is “the stability of our times.”  None of these developments surprise Him.  He is here with us and here with Aaron. 

We all learn the deepest lessons in the hard times.  We test the solidness of God when the ground upon which we stand is uneven and giving way beneath us.  Whatever you’re going through, I hope that you have experienced the stability of God in the center of your pain.  He is there for you, constant and sure.  I pray that I remember this truth in whatever lies ahead as well.  

 

 

Where’s The Pumpkin?

Aaron went to the pumpkin patch today with his day group.  Every year that he has gone, he brings back a pumpkin that we place on our front porch.  Aaron’s always proud of his pumpkin patch pumpkin, and he loves seeing it sitting on our porch. 

Today he bounded in the door as always, jacket dragging on the floor.  He was full of things to tell me.  I got the first word in, though, as I quickly said hello and then asked him right away if he had enjoyed the pumpkin patch.  He said that it was OK, but he thought it was a little dumb.  That’s pretty typical Aaron.

He was more anxious to tell me something important, though, than to discuss anything else about the pumpkin patch.  “Mom,” he said in his urgent voice, with a sort of whisper sound thrown in.  I knew this was special, so I stopped what I was doing and I looked at him.

“Guess what I told Rosie today?” he asked. 

He waited, so I asked him to tell me what he told Rosie.

“I told Rosie that I love her,” he softly said.

We stood there, eye to eye for a few brief seconds, and then Aaron rubbed his hands together with delight and laughed a very happy laugh.

He then told me that Rosie gave him a hug.  And later he repeated the story to Andrea, with the same delight that he had conveyed it to me…..and to Gary, as well. 

Oh, after Aaron told me of his declaration to Rosie, I realized that he had not carried in a pumpkin.  I asked him where his pumpkin was.

“I gave my pumpkin to Rosie,” he happily said.  And off he went to his room.

Well now, isn’t that the way it is?  Mom is second fiddle now.  I may never get Aaron’s pumpkin patch pumpkin again.

And that’s the way it should be.   

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.