Category: Adult Autism

I Was Thinking

I could tell right away this afternoon, as soon as Aaron came in the door and found me downstairs, that something wasn’t quite right.  As I looked at him I knew that he had been crying, and that was confirmed as soon as he began to tell me about his day.  He was trying to smile but his mouth had that familiar taut look that told me he could easily cry at any moment.  I tried to just listen, but his version of events is usually very hard to follow.  Therefore, I had to ask questions, which frustrated him……especially when he was already frustrated.  That led to me giving him a lecture about what he told me had happened.  I wasn’t helping at all.    

After listening to Aaron, and especially after talking to Misty, one of his staff – I was able to piece together what had transpired.  Apparently, at the theater, Aaron had given Rosie a playful whack on her rear as she passed him in the aisle on her way to sit beside him.  Rosie didn’t  think a thing about this behavior of Aaron’s.  One of the staff told Aaron that he was being rude, and for some reason Aaron became very sad about what he had done.  He finally got up during the movie and sat outside in the hallway on a couch. 

Let me explain some things about Aaron.  He does not have the filters that you and I have.  He has an almost uncontrollable urge to whack us on the back or on the rear or maybe on top of our heads.  He doesn’t do it all the time, but often enough that he gets fussed at regularly.  Aaron also has a very hard time controlling his mouth.  Often he is funny, as you know from what I write about him, but he can also be very insulting and frustrating.  He might call someone weirdo or stupid or dumb or many other names. 

It’s complicated, but Aaron’s brain literally doesn’t connect things the way that others do.  We have worked and worked with him from the time that he was a very little boy over these issues……and many more.  He is high functioning enough that you would think he could control these impulses, but he often cannot.  We still correct him……we still reward him, especially with praise, when he shows restraint……..we still caution him about correct behaviors and speech before he goes to his day group………but we still see these same behaviors over and over.  We can’t even tease Aaron very often because if you give him an inch he will take a mile.  In other words, if he sees a small opportunity that teasing may afford to tease us back, then he will strike with both barrels.  How often have we all heard Aaron say, “Oh yeah?”…….and then launch into some verbal or physical barrage, all “in fun.”  Therefore, we have to discourage physical play with Aaron as well as verbal bantering.   

Aaron’s mouth and his hitting are a very large part of his disability when it comes to getting along in groups of people.  When his staff understands this, and loves and understands Aaron, then things run smoothly.  We are very thankful for the understanding and loving staff that he has at Paradigm. 

Now back to today.  For some reason, Aaron was very emotional today.  Recently we’ve noticed that he wants to be pleasing, and that he talks a lot about having friends.  He wonders why certain of his peers at Paradigm like him, which is both sweet and sad to hear.  He and Rosie are very special friends, and they understand one another.  They can poke each other or step on each other’s foot on purpose, and know that it’s all in fun.  So when Aaron gave her a little hit on her rear, it was no big deal to him or to Rosie.  It was also appropriate for one of the staff to tell Aaron that he was being rude.  Gary or I certainly would have done the same thing.

But for some reason, today, it got to Aaron.  He didn’t want to be rude, especially to Rosie, and he didn’t want to have to come home and tell me that he had been rude and that he had hit Rosie when I told him once again this morning not to hit anybody.  So he left the movie that he really wanted to see, and he sat out on the couch.  He said to me, “I sat on the couch and was thinking.  What do you think of me thinking?” 

I had to smile at that.  And I told him I thought it was a very good thing to be thinking.  He continued, “What does that mean to you, that I was thinking?  That was new to me.”  As he talked and talked, I felt like I understood what he was trying to convey.  He was upset that he had whacked Rosie and he was upset that he was rude and he was upset that he had to come home and tell me about it.  But it went even deeper than that.  I learned from talking to Misty on the phone that Aaron had told her the most amazing thing.

As they drove away from the theater, with Aaron crying, he said to Misty, “Do you know why my brain doesn’t work like everybody else’s brain?  I tell my brain to not do something but it does it anyway.”

My Aaron expressed himself in a way seldom heard from him.  It was both eye-opening and heart breaking.  How I wish I could reach inside his head and rearrange all of his neurons for him as easily as I can gently put a band-aid on his wounds!  How I wish I could give him a magic pill that could control his impulses!  How I wish that I could make his life easier.

What can I do?  I can, along with Gary, love our Aaron.  I can listen a little longer before I jump in with a lecture, assuming I know the whole story as I did today before he has time to slowly sort it out in his head and tell me.  I can, like Aaron, learn to sit on the couch and do some thinking……….some thinking about what Aaron is thinking.  And that can be some deep thinking right there, trust me.  For what Aaron is thinking is complex and puzzling and confused…..and sometimes just sad.  His tears today showed me that. 

Well, he’s in the family room right now crunching on some cucumbers that Gary sliced for him.  I hope he’s done with the crunching before I go down.  He wants me to do something with him, and I hope that I have the time.  Maybe I’ll give his back a good tickle with the back scratcher, and listen to him talk. 

No telling what I’ll learn if I just listen. 

 

Weighty Matters

This morning Aaron walked into the kitchen while I was getting Gary’s lunch ready for him to take to work.  I told Aaron good morning as usual, and as usual he didn’t respond in kind.  The first words out of Aaron’s mouth were, “Mom!  Do I look like I’ve lost weight?”  Why waste time with a “Good Morning” when there are other more pressing matters to discuss…….like weight.

Aaron has had a weight issue for much of his adult life.  Some of it is genetics from my Hollandsworth side of the family.  He has that stocky build, most definitely.  And much of the weight issue is also from medicines that Aaron takes.  Last year we weaned Aaron off of two medicines, and as a result he lost 65 pounds.  We had lots of blood work done to check for any physical issues, but he was totally healthy.  So we bought him new pants that were two sizes smaller, and he still had to wear a belt.  However, he is now on a new medicine and has gained back some weight.  He still looks good, and we don’t want him to worry too much about his weight, but it wasn’t lost on him last week at his seizure appointment that he has gained some weight back. 

Aaron waited for my answer to his question this morning.  I told him, as I always do, that I can’t tell if he’s lost weight overnight.  But that wasn’t enough for Aaron.  “Well, do I look 189?”  I assured him that he looks good and to not worry about that number, but to just be careful with what he eats.  “Well, did I look 189 at the doctor?”

Oh, Aaron.  He thinks that we can tell from one single day to the next whether he has lost or gained weight, or whether he looks like he weighs what he does from day to day.  If only it were that easy! 

Aaron loves his food.  He not only loves eating it, but he loves to analyze it and talk about it and try to figure it all out, especially if the food is unusual to him. 

He called me once when Gary and I were on a trip.  He very excitedly told me about how he had gone to a Chinese restaurant, and that he had chicken nuggets (as he called them) and a salad.  “But Mom, there was no ranch dressing!  There was only a dark brown dressing with those seeds.  Or would you call them beads?”  Later he added:  “Mom, that dressing is a soft black color.  Ranch is tougher.”  Another observation:  “Mom, Chinese love fish food!!”

Speaking of salad, he decided some time back that he no longer wants croutons.  I learned that fact at Olive Garden one day when he looked at the salad and said, “Mom, I don’t want the hard parts.  Do you want me to give you the hard parts?”  As he started handing me the croutons I realized what he meant by the “hard parts.”

He won’t eat cotton candy, thankfully, but one day he described the funny cotton candy he had seen at the store.  “It’s like the fluffy stuff inside a pillow!” he told me.

“What are those round circle things at Long John Silvers?” he asked one day.  We finally figured out that he meant hush puppies.

Aaron opened our freezer one day, and exclaimed, “You have the ice cream with stripes!  You wanted striped ice cream?”  That would be Neapolitan, in case you’re wondering. 

And one of my favorites, recently, was the other night when he said, “Mom, I ate one of those vanilla chocolate things on a pole!”  
 
Aaron’s chocolate vanilla thing on a pole!

Coming home from his group one day, he happily told me that they had doughnuts to eat.  I asked what kind they had, and he answered, “You know, those normal kind……the green ones.”  That’s his color blindness kicking in, just so you know.  And right after he told me about eating green doughnuts, he asked, “Does it look like I’ve lost weight?” 

Not with eating green doughnuts………or any other color, Aaron.

He gave me a running list of what he had eaten one day when he returned from Paradigm, his day group.  He said they had doughnuts, and tornado chips [that’s Bugles, by the way], etc., etc.   “I’m over full!!” he exclaimed. 

Moderation is always an issue with Aaron.  We try and try to make him understand that it’s OK to occasionally eat a little of something, but not a huge amount.  He usually wants the super large of everything, or multiple bags or boxes.  Many of you will remember me writing about the #52 Slushie from Quik Trip that Aaron was always talking about, and how I finally realized it was a 52 ounce Slushie that Aaron always bought.  The biggest of the big, of course!

Even if it’s a healthier food, we sometimes have to limit his intake.  One day he was eating cheese slices while watching television.  I walked in to find a little pile of wrapping papers by his chair as he proceeded to say, “At first I did not know that they did not have a flavor.”

So why did you eat FIVE of them if they did not have a flavor?!

“What do you want me to eat while I watch TV?” he answered. 

I almost asked why he didn’t just finish off the wrapping papers as well, but I thought I better not give him any ideas.

We try to encourage good food, although I know that I allow more junk food than he needs.  One day I was telling him once again that he needed to eat good food, like eating supper with us instead of snacking during the day and again at night.  “So what are you having for good food tonight?” he asked.  

He loves celery with peanut butter, but doesn’t like the mess in his teeth.  “I thought I had a rope in my teeth,” he said as he picked and picked at the celery fibers in his teeth.  He loves cucumbers, but was amazed one day to see a commercial that showed a spa with a woman on a table………and cucumbers over her eyes.  “Mom!  That woman had cucumbers in her eyes!!  Do you want to do that?  Do you want cucumbers in your eyes?”

He saw a commercial about high cholesterol and wanted to know all about what it is.  He was eating peanuts and so pointed to the peanuts in his bowl after I explained high cholesterol.  “Is this it?”

Sometimes after a seizure, he loses his sense of taste for awhile.  One day he said, “Mom, I think my mouth is sick.”  So even though Aaron tends to eat too much food, we don’t like it when his mouth is sick. 

At other times his mouth is just fine, but he sure is confusing.  Take the time he was telling me that he had eaten Doritos at Paradigm.  “Mom, you know those Nacho Cheese Doritos?  Well, I don’t like them all the way.  It’s not that I don’t like them.  I just don’t like them ALL the way!  Do you understand?”

Sure I understand, Aaron, about as well as I understand you most of the time.  Still scratching my head on that one the same as I scratch my head concerning Aaron so often.

So we come full circle, back to gaining and losing weight.  One night Aaron said, “Mom, tonight I ate fruit and cheese.  So does it look like I’ve gained weight?”

“Aaron,” I answered yet once again.  “I can’t tell in one night if you look like you’ve gained weight.”

And he replied, “Then does it look like I’ve LOST weight?”

He still doesn’t understand why I shake my head, walk away, and head for the chocolate. 

Aaron better not say one word about MY weight!

 

 

Will You Be My Partner?

This morning Aaron had an eye exam, and then he and I went to lunch at Chili’s.  I would like for you to join us for lunch as I try my best to re-create some of our conversation.  Maybe it’s the warm weather and the beautiful sunshine, or the fact that he had a great and fast eye exam, or just the fun of eating out at one of his favorite places……..but Aaron was a pure delight during lunch.  Sometimes his autism is in full force but in such a funny way that I just wish everyone could experience it like I do. 

So here goes:

We were nearly at Chili’s when Aaron started talking about one of his staff that drives him home.  Aaron has had to learn to understand her.  She is very caring but is also very firm………stern, as Aaron says.   Aaron mentioned that fact again and I re-affirmed to him that _____ is very nice.  “Sometimes I don’t see it that way,” Aaron said. 

As we entered Chili’s and were ushered to our booth, I had to urge Aaron to tone it down.  He was pretty loud and I didn’t think anyone else needed to hear his exposition of his stern staff……or any of the other subjects Aaron wanted to loudly discuss as we sat down.  I had to draw his attention away from ______ and get him to look at the menu, where he fairly quickly chose enchiladas…..because there was a picture.  He greatly prefers to order food if he can see a picture of it first. 

His salad came quickly and he promptly removed the croutons for me to eat.  He likes for me to pour the dressing on, which I did.  He wanted every bite of that dressing, though.  “Mom, can we dig it out?” he asked.  So I scraped and dug as much of the dressing out of the little holder as I could, and he was content.

I was looking at one of the servers and Aaron didn’t miss that fact.  “Mom, are you looking at a person?  You tell me not to stare.”  OK, Aaron……OK.

Our bubbly server brought us our entrees and we were happily eating as Aaron talked on and on about black beans and what they are and has he had them before and do I have some at home and what have I cooked that contains black beans.  The happy server bounced by and looked down at our food as she said, “Isn’t it scrumptious?” 

“She’s strange,” Aaron said as she walked away.   I asked him why he said that.  “I don’t know what she said there,” he told me.  So then we discussed what the word scrumptious means, even as I knew that the main reason Aaron thought she was strange was that she was cheery and talkative and very friendly…….all things that Aaron doesn’t relate to at all in other people.  Like when the eye doctor walked in the room earlier and gave Aaron a big hello and a hand shake…..only to be met by no eye contact and a grunt from Aaron. 

Soon Aaron was telling me about how his special friend, Rosie, often laughs at things that he says.  “Rosie thinks I’m funny,” he said.  “You are,” I replied. 

“Even when I say that the food they’re cooking at Paradigm smells like poop?”

Uh, no Aaron……..not then.

Our server whizzed by again and made another peppy comment, and Aaron………under his breath, thankfully……..said, “OK, weirdo.”   He then got fussed at by me, to which he replied, “But she’s strange.”  And if Aaron thinks that a person is strange, then to him it is perfectly fine to mention that this person is a weirdo. 

“But I wouldn’t tell her,” he clarified, as if that made it all right.  “Don’t you tell her,” he said to me.  I assured him that wasn’t going to happen and then I asked him why he thought she was a weirdo. 

“The way she talks about food,” he explained.  “Scrumptious.  You don’t use that word.”

Well I know I won’t now, Aaron, because you’ll call me a weirdo!!

“Mom,” he went on, “you should try in the Olympics!” 

“I should be in the Olympics?” I asked.  

“Yes,” he answered.  “That dance skating.”  So I asked Aaron why on earth he thought I should be in the dance skating Olympics and he reminded me that I dance at the house.  To which I reminded him that my dancing irritated him.  And besides, I carefully told him, I’m a little hefty to be wearing those skating outfits.  He said he still thought I should do dance skating, so I asked him if I would embarrass him as I tried to fit myself into that little outfit and did my irritating dance. 

“No!” he affirmed.  “I wouldn’t be watching TV!  Dad would.”

He didn’t understand the depth of my laughter.

“So would you be my partner?” I asked him.  “Would you lift me in the air?”

“No!” he said.  “You said you were fat!  But I won’t say it in public.”

Thanks, Aaron.   I feel better.

More laughter from me made Aaron slightly grumpy, as I noticed when he started to kick me under the table.  That was my cue that he now thought I was laughing AT him in a mean manner, which he really detests. 

“Aaron,” I said, “I was laughing because you are so wonderfully funny.  I was actually paying you a compliment.”

He looked at me cluelessly, so I asked him if he knew what I meant when I said that I was paying him a compliment.

“You’re giving me money?” he hopefully asked.

I knew it!  Literal Aaron.

Soon he had finished every bite of his enchiladas and every black bean and every kernel of rice, as well as all of his water, so we got out of our booth.  Aaron walked ahead of me, looking at every table on the way out so that he could see what all the people were eating.   Many of them looked at him, too, but he didn’t care.  And I didn’t, either.

Before leaving the house this morning, Aaron knew that I had called the endodontist and made an appointment for him to be checked for a possible root canal.  He asked if the doctor would know what tooth it was and I told him yes, that it was on the referral as tooth #13. 

On our way home from Chili’s, we stopped at the vet for some dog food.  Aaron bounded in the door and soon spied the resident cat.  Kato enjoyed the petting and Aaron enjoyed having Kato bite him playfully.  Then Aaron turned to the girl who was ringing up our purchase and loudly proclaimed, “My number 13 tooth has dead nerves so they have to give it a root canal!!”

She laughed, and I think she gets Aaron because of her relaxed reaction.  Out of the blue, with no reference point at all, Aaron for some reason had to give an update on his number 13 tooth.  Perhaps it’s because he knows that the vet is a doctor and that a doctor will work on his tooth.  Who knows?

That’s just it.  With Aaron we sometimes don’t know and never will know.  But I do know that he is funny and clever and just delightful on a day like today. 

And I’ll take it!  I think he’s an awesome partner!

 

Confucius Say……….

Aaron has been home for three days because of the big snow we had.  When Wichita schools are closed then his day group is closed as well.  Plus I wouldn’t have wanted him out on these very dangerous roads.  It’s really been fun to be snowed in together……for the most part.  He has been very happy to watch movies, or watch movie clips on his computer; he’s been happy to play computer games; he’s been happy to watch his taped Law and Order episodes; he’s been happy to eat tons of peanuts; and he’s been happy to just enjoy time with me.

Of course, I’ve had to adjust to having Aaron repeatedly ask me questions. 

Mom, what are you doing?

Mom, what’s for lunch?

Mom, what are you doing now?

Mom, can we play Tri-Ominos?

Mom, are you watching Wheel of Fortune?

Mom, what are you doing now?

Mom, can I take a nap?

Mom, do you think we can play a game tonight?

Mom, now what are you doing?

Mom, what’s for supper?

Mom, did you say you could watch Wheel of Fortune?

Mom, what are you doing?

In fact, Aaron saw this Baby Blues cartoon yesterday and said, “Mom, look!  This is like I do to you!”   Is it ever!
 

On his first snowed-in morning, I looked in the family room and saw Aaron in the perfect lazy day posture.  He had the right idea from the very start.  That morning, I fixed him French Toast and even cut it into little squares the way he likes.  He had coffee and watched his taped program, and struggled not to slip Jackson pieces of yummy French Toast. 
 

Later, for lunch, I fixed us a pizza and we ate while we played Tri-Ominos.  Once again, Jackson wanted in on the action.  And Aaron had his silverware that he never used, and his toothpicks, and his napkins, and his bowl in which he put his pepperoni – which he later ate separately.  Don’t ask me why.  And if all these things sound familiar to you long-time readers……..welcome to my world, where I am surrounded by the familiar and the routine EVERY SINGLE day.  I just want you to feel like you’re a part of my world.

You’re welcome.   J

 
 
Yesterday, Aaron and I ventured out to our nearby Dillon’s.  It was nice to get out of the house.  We picked up both some necessary and some fun food.  And once again we ate lunch while we matched all the numbers in Tri-Ominos.  We played three games of Tri-Ominos over those three days.  Aaron won twice and I only won once.  Of course, this made Aaron very happy.

 
What did NOT make Aaron very happy……..not at all happy……..was how I started preparing him yesterday for his return to Paradigm today.  I knew that I could wait until Monday to send him back, but I also knew that it would be good for him to be made to go back today, on Friday.  School was back in session and the roads were passable, and I just knew that Aaron needed to be gently urged back into his routine. 

He much preferred his stay-at-home routine.  I always wonder if I make it too much fun to be at home.  I want him to enjoy time at home, and I certainly enjoy time with him (for the most part).  And deep down I know that no matter what his time at home holds for him………good or bad……….interesting or boring……….he still won’t want to get back into his “you have to get out of the house and live your life” routine. 

As is so typical of Aaron, yesterday he agreed with the fact that he would return to Paradigm on the next day.  This morning, however, he displayed his frustration by raising his voice and saying he would NOT go to Paradigm, and why can’t he just return on Monday, etc.  But I know Aaron and I know that Monday would be no better than Friday……..at least not by much.  And once I tell him that we are going to do something…….that HE is going to do something………I need to stick to my guns if at all possible. 

We exchanged some firm words.  He tried to use guilt.  “You just want rid of me!” he blurted out.  He tried to use sympathy.  “I’m tired!” he said.  He tried to use his bargaining power.  “But I’ll go on Monday, just not today!”  he continued.

He saw that I was standing firm, though, but what he couldn’t see was that inside I was nervous.  I was nervous about how angry he was going to become, for one thing.  I was hoping that I would remain firm but loving, not lashing out in anger at him if he became angry.  It’s that inward struggle that we parents have but that we can’t reveal. 

Finally, Aaron asked if we could stop at Dillon’s and let him get something to take to Paradigm.  He didn’t say that he wouldn’t go to Paradigm unless I stopped.  That would have resulted in a big no from me.  But he asked politely if we could stop, and so I said yes.  Aaron instantly calmed.  And though he was still a little grouchy when we left the house, he was for the most part compliant and happy.

I talked to Aaron awhile ago.  I don’t think he’s had the best day at Paradigm.  His mouth gets him in so much trouble, but also is what makes him so funny.  How I wish we could just balance him out!

Yesterday he said, “Mom!  I was reading about a man in my Handy History Answer book.  His name was Con-fuse-ush!”   Notice how Aaron pronounced that name.  J 

I need to change Aaron’s name.  We should have named him Con-fuse-ush……….because leaving us confused is just what he does on most days. 

“Mom, what are you doing now?”

Scratching my head, Aaron…….scratching my head.

 

You Voted For the Wrong Team

Yesterday was Super Bowl Sunday, a day which does not impress Aaron in the least.  He doesn’t care one bit about sports on most days, and certainly he does not see anything at all super about the Super Bowl.  Even the food I made didn’t greatly impress him.  Gary made some awesome special hamburgers on the grill, but Aaron just ate one of the regular burgers with a little ketchup smeared on it.  He didn’t care at all about the cake I made but instead munched on some Rice Krispie treats from the day before. 

He was pretty grouchy just before supper because he felt like Gary didn’t want to look at yet another clip from the War of the Worlds movie.  He was right.  Gary, nor I, had any desire at all to look at anything else related to War of the Worlds, but Aaron was very upset by that.  So after supper, dear Gary went up to Aaron’s room and watched another short clip………and Aaron was happy.

Gary and I settled in to watch the game.  It wasn’t too long before Aaron bounded into the room, asking his usual questions.  What teams are playing?  Which one are you voting for?  What color are they wearing?  It looks red to me, not orange, he said.  So are you voting for the team that has a zero for their score?

That’s about enough, Aaron.

I offered to tickle Aaron’s back, so he got the back scratcher tickler………and his animal print blanket that must always go over his legs……….and his bag of peanuts……….and his bowl for the peanut shells.  He sat on the ottoman near me and I began tickling his back, which he loves, as he watched the Super Bowl, which he doesn’t love. 

I kept having to remind Aaron that this tickling of his back was not another opportunity for him to talk incessantly about War of the Worlds.  This was our time to watch football and to listen to all the commercials, neither of which interested Aaron in the least.  Yet he was watching the game.  Aaron is always observing, whether he particularly enjoys the said activity or not.

His first astute observation didn’t take too long in coming.  “Mom, I think you and Dad should vote for Seattle.”

Yes, we knew that he was watching the game and that he was keeping track of the score. 

He wondered why the players were yelling, and what were they yelling, and were they mad.

He observed that lots of football players have long hair.

But the best question by far:  “How come football players look like they’re wearing a pacifier?”

At least he gave Gary and me something to laugh about as we watched the team we were voting for miserably lose.  Aaron thought that it was pretty funny that the team we voted for lost the game.  He has no team loyalty and no interest in that fact that we do.  It’s black and white to him.  We voted for the Broncos.  The Broncos lost.  We voted for the wrong team.  Period.

I would say that this Super Bowl business has given us a slight reprieve from all the War of the Worlds talk.  Very slight, but still a small break nonetheless. 

Shortly after he came down to the kitchen this morning, I heard his low chuckle.  I asked him what was funny, and he answered, “I’m laughing at your Super Bowl because your team only got eight points.”

See what I mean?  He has no sensitivity concerning team loyalty and team disappointment.  It’s a good thing that Gary and I don’t take all this football Super Bowl stuff very seriously.

And Aaron continued.  “You should have obeyed me and voted for that other team.”

Whatever.

But Aaron wasn’t quite done for the day.  At supper, Aaron once again laughed and then told us about one of the staff at his day group.  “Andrew voted for Seattle and they won.  I told him that my mom and dad voted for the Broncos.  You all should have voted for Seattle!”

OK, Aaron.  Well, let’s talk about something else. 

Have you seen any good alien movies lately?

 

I Survived…….WOW!!!

I am reporting in to all of you who might be wondering how I am doing today.  Many of you read my last blog and you know that I was committed to having a WOW day yesterday. That’s War of the Worlds to those of you who may have missed that bit of info.  All day long, Aaron asked many questions.  Are we watching War of the Worlds?  What time are we watching War of the Worlds?  Are we watching Wheel of Fortune?  Then after Wheel of Fortune are we watching War of the Worlds?  What time will that be?    Did you know that War of the Worlds is one hour and fifty-seven minutes long?  Are you sure that one hour and fifty-seven minutes is not too long?  Can I eat my peanuts while we watch War of the Worlds? 

I was exhausted before our one hour and fifty-seven minute movie even started.

And one hour and fifty-seven minutes was looming over my head, seeming very, very long indeed.

I had told Aaron that we would watch the movie after Wheel of Fortune, which would be 7:00.  But in order to cover all my bases and to prevent a total meltdown from Aaron, I made sure he understood that IF something came up that required my attention, then we would watch the movie as soon as that something was taken care of by me.  I know that I must always give myself an out with Aaron so that he……hopefully……..will cooperate in the event of a change to our plans. 

Sure enough, we had a change in our plans.  Andrew called, so I told Aaron that as soon as Dad and I talked to Andrew, then he and I would begin our WOW evening.   Just as I expected, Aaron was soon hovering around us as we sat on the couches downstairs and talked to Andrew.  I waved my hand and shooed him off, but soon he came back……….and left the room………and came back again………several times.  Aaron thought that this phone call was taking entirely too long.  Before the call was over, Aaron was sitting cross-legged on the floor………sighing and rolling his eyes…….and making comments about how he didn’t care about Andrew calling and that he knew Mom wasn’t going to watch War of the Worlds after all.  Even my evil eye was having little effect at this point.  The zapping power of the WOW aliens was more and more appealing to me, to be honest. 

 
We started the movie a little after 8:00.  Aaron had his animal print blanket all spread out and his bag of peanuts ready and his bowl there for all the peanut shells.  Oh, and his back scratcher that he uses to whack the arm of the couch when he gets really excited……which was often on this WOW evening.   He was beside himself with excitement as the narrator began talking about those that were watching our world from outer space………watching with cruel and unsympathetic eyes. 

“See Mom?!” Aaron exclaimed.  “Now we know they’re unsympathetic!”

Yes, Aaron, they are.

“So what does that mean?” he asked.  And I tried to explain this emotion to him for the umpteenth time, as well as the concept of cruel eyes.  But he was already off on something else, rubbing his hands together in excitement.

“Mom, that’s Ray!”      “That’s Ray’s son!”    “That’s Ray’s house!”   “That’s Ray’s daughter!”

I know, Aaron.  Just be quiet and let’s listen.

“Mom!!!   That’s my favorite part!”  he yelled as the lightning started.

CLAP!!!!!!!!!!

As if the movie isn’t loud enough, Aaron.  QUIT CLAPPING!!!!

“Watch this, Mom!   That’s my favorite part!”  he yelled again as the ground cracked open.

“MOM!!!!   The alien ship is coming out of the ground!!  Now that’s my favorite part!!!”

Good grief, Aaron, how many favorite parts do you have?

“I have other favorite parts!” he declared as he rubbed his hands together again in great excitement.

“Oh, Mom!!  Look at this!  They’re going to zap everyone!”

And yes, the zapping began in earnest.

“This is my ALSO favorite part!!  Get it??!!”  he nearly yelled.

Oh my word.  How many minutes are left?  Is this just the famous chapter six out of how many chapters?!

But I did survive, along with Tom Cruise and his two children, of course.  The lightning and the aliens and the overturned ferry and the near drowning and the fires were not a big deal.  Aaron’s incessant talking and his very loud clapping and rubbing his hands together, however, nearly did me in.    My WOW evening was nearing an end when Aaron said, “Now do we understand this movie now?  They were unsympathetic and cruel!”   Aaron loves that phrase for some reason.  And I knew that I would be explaining it over and over before his fascination with this movie was over.

Earlier, he had decided to quit his rapid eating of all those peanuts.  His bowl was full of peanut shells as he set it to the side and said, “Are you glad I got off the peanuts?” 

I wish it was as easy for him to get off this WOW movie.  This morning he was at it again, asking tons of questions and clarifying all the points that I thought we had already clarified and re-hashing their unsympathetic and cruel eyes. 

He would make a statement and then say, “Is that how you would put it?” 

Oh, Aaron.  I am so ready to put it away.  Let’s talk about something else.  We had our WOW evening.  Can that be enough?

We got home from church and I heard a sound coming from Aaron’s room.  I peeked in, and sure enough, he was watching a scene from WOW. 

Wow!

When will it end?  When will he have had enough? 

Not as soon as me, I can tell you that.  We never know with Aaron.

He wanted me to come and look at this scene again with him, the one he was watching right then.

Do I tell him that at this point, I have cruel and unsympathetic eyes?   So tempting………

WOW!!

Autism 101:  Individuals with autism, particularly Asperger’s Syndrome, tend to have “eccentric preoccupations or odd, intense fixations.  They tend to lecture on areas of interest; ask repetitive questions about interests; have trouble letting go of ideas…..”   (Karen Williams)

WOW!   Not wow in the sense of……..well, wow………but WOW in the sense of today is War of the Worlds day.  Therefore, I have labeled our day WOW day.  In more ways than one.

I must watch War of the Worlds with Aaron if I am to have any peace in my life.  His intense fixation with this movie must end, and the only way to head toward that goal is for me to honor my word and to watch this movie with him.  Perhaps then, after seeing WOW, he will let go of all the WOW talk and all the WOW questions and all the WOW lectures.  Of course, he will eventually move on to a new focus.  It may be a new movie………it may be a news headline…….it may be a game………..it may be ANYTHING.   Sigh.

It is funny, if I can just remember to keep my sense of humor intact during the endless WOW talk.  This morning he joined me at the kitchen table, early.  He didn’t sit down but he stood there peering at me.  I greeted him with a good morning, and he smiled……….and then said, “Mom, in chapter six…………”  War of the Worlds, first thing on a Saturday morning.  It must end.  I hope.
 

“In chapter six there were lights.  Why were there lights?”

“What was that screeching noise?”

“Why did that screeching noise bother people?”

“Why was that guy taking pictures?”

Coffee helps.  I got up to make a fresh pot.  I had already poured a cup for Aaron, but seeing the fresh pot starting to perk made him want more. 

“Mom, I’ll get it when it’s over.”  Seeing my clueless expression, he continued. 

“You understand?”  And it hit me that he was talking about the coffee.  When it was over……when the new coffee was brewed…….he would get another cup. 

Yes, there is much to understand about Aaron.  He was soon back at the table where I was sipping my own coffee.  “Mom, if you want to watch War of the Worlds, come and get me.  OK?”

OK, Aaron.

“Come to my room and get me.”

All right, Aaron.

“Will you come to my room?”

YES, Aaron!!!!

 
Understanding Aaron is key to living with Aaron.  It doesn’t always make it easy, but it does help to understand how his complex and amazing mind works.  His connections are not like yours and not like mine.  They are Aaron’s.  For whatever reason, War of the Worlds is the focus of his life right now.  Therefore, it has become the focus of mine as well. 

I redirect his thinking when I can.  I talk about other things……….I tell him that we will discuss this movie at another set time………..and other “tricks of the autism trade.”

But nothing will erase Aaron’s fixation on this movie at this point in his life.

Wow!

And WOW!!  So today is WOW day and one way or the other, I will watch WOW, and I will listen to Aaron’s yelling, and to all of his comments, and his questions, and to the LOUD clapping that is sure to come. 

And I WILL sneak the remote away from his sight.  There will be no pausing of this movie in order to inspect every remote element of every scene.  Especially in chapter six. 

I am a survivor.  I will survive this day and this movie.

WOW!!!!

What Was I Thinking, Indeed?!

I know that as parents we often wish we could go back and change some things.  We wish that we could say something we didn’t say, or take back something that we did say.  This is how I am feeling tonight……….kicking myself for something I said to Aaron.

I told Aaron that I would watch War of the Worlds with him.  Not that I might watch it.  Not that I would think about watching it.  Not that I would see if I could watch it someday.  I told him flat out that I would watch War of the Worlds with him.

What.   Was.   I.   Thinking.

Aaron is literal.  Aaron doesn’t forget literal comments.  My comment was literal.

He and I were watching Wheel of Fortune.  Well, I was watching Wheel of Fortune.  Aaron was busy shelling peanuts, happily dropping the shells into his bowl (of course), chewing the peanuts thoroughly, and trying to slyly brush any stray shell pieces off into the floor and then further brushing them under his chair.  Shell, drop, chew, brush…….shell, drop, chew, brush.  Over and over. 

When he wasn’t chewing….or often when he WAS chewing……..he was talking about War of the Worlds.  Every aspect of the spaceship and the aliens was being discussed as I tried to watch Wheel of Fortune.  I’ve become quite attached to this game show.  Aaron is mostly attached to the snacks he eats during this game show.  Anyway, I was halfway answering his questions as I watched Vanna turn the vowels and “constanents,” as Aaron calls them. 

I told him a few days ago that I remembered (sort of) watching War of the Worlds when it came out several years ago.  I told him that I thought it was a good movie as far as alien movies go.  Aaron thinks that ALL alien movies are good, but he knows that I don’t agree.  So for me to say that I thought War of the Worlds was pretty good is like throwing gas on a fire.  Aaron is on fire!  He thinks that not only should I remember every detail of this movie, but that I should want to talk about it over and over and over again. 

As he kept his War of the Worlds monologue going during Wheel of Fortune, I heard him ask something about us watching this movie together again.  Before I knew what was happening, the words had come out of my mouth.  “Yes,” I heard myself say, “I’ll watch War of the Worlds with you.” 

When Aaron’s head shot up, I knew that I was in over my head.  I had made a definite commitment.  I had said this thing that I could not take back.  Aaron had processed my comment and filed it away before he even popped the next peanut in his mouth. 

Oh boy.

It didn’t take long for the inevitable to start happening.  “So Mom,” Aaron excitedly said, “when do you want to watch War of the Worlds?”

I don’t know, Aaron. 

“How about tomorrow night?” he asked,

Probably can’t do it tomorrow night, but I’ll let you know when I can.

“OK,” he said.   Pause.  “When do you think you can?”

Aaron, I’m not sure but I’ll let you know.

Thankfully, we were interrupted by a visit from friends…….but I eventually did have to go back into the family room, where Aaron was still busily eating those blessed peanuts. 

There was peace for a minute or two.  Then…….”You want to watch War of the Worlds, right?” 

Right.

“Do you know when?”

No, Aaron, I’m still not sure about that. 

“I was just wondering,” he said.

Soon he went downstairs to discuss something with Gary, and then when he came back upstairs and turned the corner into the family room, he interrupted my basketball game with, “Mom, you just let me know when you want to watch War of the Worlds.”

Yes, Aaron, I will.

Thump, thump, thump up the stairs he went.  Not even two minutes went by.

Thump, thump, thump down the stairs he came.

“Mom, we can watch War of the Worlds some night.”

Just this flat statement.  And I just as flatly answered that we would watch War of the Worlds……..some night. 

“You don’t know when?”

I wanted to tell him that if he didn’t hush, there was going to be a war in our world.  But I didn’t.  My mouth had already gotten me into too much trouble tonight.  I just told him yet again that I did NOT know when. 

Thump, thump, thump……..and I remembered that I needed to do a couple things in the kitchen.  The peace I was enjoying was short lived.  Did I hear………yes, I did………thump, thump, thump. 

“Hey, Mom!  Chapter six in War of the Worlds is my favorite chapter.  Is chapter six your favorite?”

Aaron, I have no idea if chapter six is my favorite.

“Well, you should watch it to see.”

Touche, Aaron, touche.  That was clever. 

And don’t you know it wasn’t long before I was sitting on the edge of Aaron’s bed, watching the big scene from chapter six that made it Aaron’s favorite chapter? 
 

When we DO watch War of the Worlds, will he let us fast forward through this scene in chapter six since I just watched it with him?  Not likely.

I also sat there and watched how the grenades blew up the alien ship and killed the alien…….like reading the ending of the book first.  Can this count for watching the whole movie?  Not likely.

As we got ready to play a quick game of Skip-Bo later, he told me that a woman did such-and-such in chapter 10, and this happened in chapter 22, and something else in chapter 19.  Good grief.  How does he remember all that?

The same way he remembers that I made one brief little comment about watching War of the Worlds and I forgot to insert the word “might”…….or “maybe”………or “perhaps”……..

Tomorrow he has a dentist appointment.  I might have 15 minutes of peace.  Maybe 15 minutes of Aaron not being able to talk about War of the Worlds. 

Perhaps. 

 

Back to Normal, For Now

This has been a wonderful weekend for Aaron, especially compared to last weekend when he was feeling so horrible with all the seizures he had.  And the weather has been pretty and warm, so he was able to get outside for his relaxing time in the mulch.  Sorry for the picture through the screen.  Aaron is getting a little tired of all the pictures that Mom wants to take, so I didn’t let him see me taking this one.  J 

He enjoyed a trip to Dillon’s, where we had fun looking at pomegranates and kumquats……..and where he got to buy some of his favorite croissants (pronounced as croysants if you’re Aaron).  His eating has improved over the course of this week, but it’s been slow in coming.  And he’s been so slow all week in every way – in his movements and his speech and his eating and his thinking. 

He’s getting tired of us mentioning anything remotely to do with his health or with how he’s feeling.  Last night he got his bed ready in the meticulous way that he does.  There’s Mr. Snake, who will be moved under the covers beside Aaron when it’s time to go to sleep.  This is Aaron’s pre-sleep set-up that he has as he reads his Handy Answer Book.  He changes everything when it’s time for actually sleeping.  Routine, routine, routine.  So anyway, I mentioned something last night before I left his room that made him think I was going to talk yet again about how he was feeling.  He said, “Stop with all the how I’m feeling stuff!”  I think he’s on overload and ready to get back to normal.

He clipped all my coupons today even though there were lots of them, and he did it without taking a break.  He’s back to clapping loudly when he watches television, especially Wheel of Fortune.  Man!  Tonight I had to tell him to stop, but it felt nice to actually hear him clapping, if that makes sense.  He’s been yelling as he watches a movie in his room, and talking our ears off about the latest alien plot that he’s trying to figure out.  Annoying sometimes?  Yes.  But right now it’s a welcome sign that Aaron is back to his normal self, and we’re thankful.

We took a walk around our neighborhood circle this evening.  It was a beautiful evening for a walk, so we stopped by the lake and snapped a few pictures.  When I compare last week’s picture, taken at about this very same time of day as today’s shot, I’m very thankful for the huge difference.  

 
Aaron and I will see his autism doctor tomorrow.  We’re continuing to pray for wisdom and direction as we talk to her, and then to Aaron’s Epileptologist in February. 

And Aaron……..he’s planning where we will eat tomorrow for lunch, when he’s not talking about aliens.  I was so bogged down in aliens as we took our walk that I had to re-direct him to the first thing that came to mind, which was naming various restaurant possibilities for tomorrow.  But he’s talking, which he can’t always do after some of his seizures, so again I’m thankful. 

Sometimes the hard times change our perspective on thankfulness.  What we took for granted in the normal times becomes huge when it’s taken away, and if it’s restored then we just well up with thanks.  I know myself, and I know that I’ll end up taking things for granted or I’ll get irritated too often again as I tend to do. 

Like yesterday……when Aaron was eating lasagna………and I stepped out…….and Jackson the lucky Great Dane had a nice piece of lasagna for his lunch. 

Aaron!!! 

Let’s Get This Working!

Aaron has had epileptic seizures since he was in the first grade.  While I can’t say that we ever get used to seeing him have a seizure, we are used to the fact that he has seizures.  They’re all difficult to watch, though – very difficult.  For the past few years, the majority of his seizures are at night.  On a rare occasion he might have one during the day while he is napping.  We keep a baby monitor on our nightstand so that we can hear him if he seizes during the night.  We just got a new monitor with a talk button that we can push down and then talk to Aaron in his room.  At first he didn’t like this.  He said that we were spying on him.  But now he thinks that this is pretty cool, and on the occasions that I have talked to him, I can hear him chuckle.  

His seizures have been spaced weeks apart for quite a long time.  We’ve become comfortable with this level of seizure control.  But over the past two months or so, his seizures have become more frequent.  Now they have been occurring every 10 to 12 days.  This isn’t good for many reasons, and of course we wonder why there is an increase.  We recently put him on a medicine to help control some of his impulsiveness and anger outbursts.  We wouldn’t do this unless these issues – these behavior issues – were interfering with his life and happiness………and they do just that.  However, many of these drugs can also lower the seizure threshold in those already prone to having seizures.  The medicine that Aaron takes only has a .1% chance of having this side effect.  We hoped that it wouldn’t increase his seizures.  We still don’t know if it is.  We are now removing him from this medicine, will see his two specialists soon, and will have many decisions to make.

Poor Aaron.  Sometimes I feel like he’s a pawn in this great guessing game of medicine controls.  It’s a huge responsibility for us as parents, as any parent of a child with medical issues can attest.  Aaron’s health and safety and happiness are our primary concerns.  It’s just very hard to know if we’re going in the right direction to achieve those aims or not.  What helps might also hurt.  There is so much weighing to do…….so many decisions to make. 

Early this past Sunday morning I heard that awful sound on the monitor by our bed that told me Aaron was having a seizure.   It was just after 3:00 a.m.  Then again he seized almost exactly 2 hours later, and again 2 hours after that.  3:00…..5:00…….7:00.  His poor body.  Aaron’s seizures are hard, and sometimes last for close to 3 minutes.  He made his way down to the kitchen sometime after 8:00 that morning, all groggy and with a terrible headache.  I had him take his pills, but right away he laid on the couch and told me he felt sick.  I ran for the trash can and he promptly threw up all his pills.  He spent the entire rest of the day sleeping, throwing up when he was awake, and managing to keep down a little ginger ale.  Did he have a stomach virus along with the seizures?  Sometimes he throws up after seizures, but this was extreme.

 
At 5:20 that evening, Gary and I watched him have another seizure.  Afterwards he was totally limp, and later when he awakened some, he couldn’t speak.  That’s always a hard thing to see.  At 10:00 he took his night pills, threw them all up, and later was able to finally keep a second set of pills down.  And he slept all night…………no more seizures and no more throwing up.  I was amazed at all that sleeping! 

On Monday morning I went into his room several times to check on him.  Finally, I made some noise and he woke up, giving me an Aaron smile as he stretched his arms and legs.  He made it out of bed, and I had him scoot down the stairs on his bottom while Gary stayed in front of him to catch him if he fell.  He was just too unstable to walk down a flight of stairs.  He was much more coherent and alert, though still slow.  I knew he was hungry after not eating for 36 hours.  He said that some applesauce sounded good, so I fixed him some and watched him as he slowly ate……..and stared……..and leaned over………..and ate some more.  Feeling that he was tired, I told him that he could take a break and have some more applesauce later.  “How ‘bout I do it now?” he asked.  So hungry Aaron ate more applesauce, of course, and then drank coffee.  He was feeling better by the minute!

He had a good day……..slow and quiet, but very good compared to the day before.  That evening I asked him if he wanted a haircut and he quickly agreed.  I know it felt great to him to get out of the house, and he always loves getting a hair and goatee trim.  Then we walked down to Papa Murphy’s and got his favorite pizza for supper.  Later, he very slowly ate his piece of pizza.  I commented to Gary that I could tell Aaron didn’t have an appetite because of how slowly he was eating and because he had said he just wanted one piece of pizza…….unheard of for Aaron!  Very softly he said, “I have an appetite.”  And I assured him that it was fine to not want to eat much.  Then he reached for another piece of pizza, which I knew he didn’t want, as he repeated, “I have an appetite.”  It’s OK, Aaron.  You don’t have to eat.  And later, as he was settled in his chair to watch Wheel of Fortune and I was cleaning the kitchen, out-of-the-blue he said, “Mom!  I have an appetite.” 

Yes, Aaron, we’ve established that.  And I’ll know next time not to accuse him of losing his appetite!

He’s been doing fine yesterday and today.  He went to his day group both days.  He’s still very slow, almost like he’s in a daze.  He doesn’t have his usual bounce and hasn’t been talking much.  As I’ve said before, this quietness is a side of Aaron that is always concerning. 

Last week he came home as the proud owner of a new Whoopie Cushion.  I believe one of his day staff won it at All Star Sports and gave it to Aaron.  He hasn’t wanted to open it or to use it.  Does he remember the last time he had one?  We all laughed and laughed together as we each sat on it, including Aaron.  But then Aaron put it on the floor and from a standing position he sat on it with full force.  It exploded!  And we all nearly died from laughter.  Maybe Aaron is now cautious about his Whoopie Cushions after such an explosive event.

 
Last night as I helped Aaron get his bed ready, he reached over on his bookshelf and held up the still packaged Whoopie Cushion.  “Mom, I hope we don’t get this working!” he said with a smile on his face.  No amount of talking on my part could convince him to get the Whoopie Cushion working.  He tucked it back onto his bookshelf and headed for bed.

Who can tell what Aaron is sometimes thinking?  And I’ve been thinking about that statement today.  I DO hope that we get Aaron and his body working again the way it should………the way that is safe and healthy for him.  I also hope that his fun personality comes back, not in an explosive way but in the amazing way that is so Aaron.  His unique view of life……..his funny comments………his amazing insights.  All of these traits are what make Aaron such an interesting, and sometimes frustrating, person to live with. 

He just came home from his group, immediately coming downstairs to find me.  “Mom!  Barb said I made a new friend today.”  Then he told me about J., whom he hasn’t gotten along with too well.  “J. had some silly putty and he put it over his mouth.  Then it made farting noises!”  Aaron was laughing as he told me, and apparently was laughing a lot at J. as he did this….and J. was laughing as well.  “Those farting noises were funny!”  Aaron said.

I think Aaron’s coming back.  I’ll take it…….I think.