Walking the Tightrope

I heard Aaron on the monitor early this morning, a little after 5:00.  I rolled over in bed so that I could hear better.  No, it wasn’t a seizure.  I listened for a couple more minutes and then knew that Aaron was awake.  Not only awake, but it sounded like he was out of bed.  Soon Gary got out of bed and went downstairs.  Aaron popped out of his room when he heard the footsteps and said, “Mom?”  But he knew it wasn’t Mom when he heard Gary’s voice, so he went back to his room while I listened again on the monitor.  Soon I got up, too, and went down to fill my coffee thermos.  I headed back upstairs and was in Andrea’s room, where my quite time desk is, and was quietly closing the door when once again Aaron quickly opened his bedroom door.
I was discovered!  He clomped up the hall and began to tell me about his head and stomach hurting.  His blood shot eyes also told a tale.  Aaron has started a new medicine this week, and every morning he has gotten up early……..much earlier than usual, but this morning was way too early.  Is it the medicine that is causing his sleep to be disrupted?  Does he really feel sick?  With Aaron it’s hard to tell because he tends to exaggerate aches and pains in order to either get sympathy or to be able to stay home from his day group. 
I ushered him back to his room while listening to him talk about not feeling well, and then he launched into a rundown of the latest movie that he’s watching.  I told him to hush about the movie, helped him take his sweater off, pulled back and straightened his covers, and finally talked him into getting in bed again over his protests that he wasn’t sleepy.  He kept talking.  “Aaron, Aaron,” I said.  “Just close your eyes and relax.  Don’t talk anymore about movies or about your head or stomach.  I bet you’ll go back to sleep.”  He wasn’t sold on that idea, but I could tell that he liked the feel of his multiple blankets on top of his tired body and that he was indeed relaxing.  I turned off his light and closed his door.
It wasn’t long before I could hear his steady breathing through the monitor.  Good!  He had fallen back asleep.  Hopefully he would stay in bed for a couple more hours, at least.  It was just a little over an hour later, as Gary was getting ready to leave for work, that I heard Aaron stirring and soon he was downstairs.  I waited in the kitchen to see what look was on his face…….what mood he was showing………when he came into the room with a smile.  Ah, relief!  He talked about not being able to sleep, about his head and stomach, and his movie once again……..but he was happy and I was hoping the pleasant mood would last.
“Mom!  I woke up at 5:09!  Why couldn’t I sleep?”  We talked about Aaron’s sleeplessness even as I reminded him that he did get an extra nap after he went back to bed.  I wanted him to feel rested and not to claim extreme tiredness as a reason to stay home today.  Soon I had talked him into eating some breakfast.  
I suggested boiled eggs and bacon, but he only wanted eggs.  He finally agreed to the bacon if I would make it crispy and not chewy.  Later he had his eggs and bacon along with his coffee as he was snuggled under his blanket watching a program on the DVR.  What a life!  Of course, the program he was watching was one that he started yesterday but he didn’t get to finish it.  Therefore, in true Aaron fashion, he started the recording over from the beginning.  He will NOT usually resume watching a program where he left off but will instead start all over from the beginning.  Some programs take several times to watch because of this regimented way of doing things.  He also presses the pause button every time he looks down at his plate to put food on his spoon or fork.  He cannot miss one second of his program………not one.  So it’s pause……scoop food……..look up…….press play……..chew and swallow……press pause…….scoop food……….
I mentioned this to Aaron this morning in a very matter-of-fact way so that he wouldn’t get defensive.  He confirmed that this is how he operates.  I just agreed with him and walked back in the kitchen as I left him to his pausing and playing, over and over and over.  There he sat, with his food and his multiple utensils and napkins and coffee………..with his particular way of watching his program………and his mother just smiling inwardly at this unusual son.
I got our supper in the crock pot and cleaned the kitchen while Aaron finished his pausing and chewing and playing.  He was very quiet, and I saw that his head was laying back though his eyes were open.  He got a little grouchy when I told him that I was going to shower, and that he should do likewise.  Later, I looked up the hall and saw that his door was closed.  When I knocked and then walked into his room, I saw him sitting at his desk, watching a movie on his computer.  Now his mood was different.  He was grouchy Aaron, and he let me know that he wanted me to leave him alone.  In fact, he took off his headphones and got up from his chair as he pointed to the sign that he had put on his door.
He was quite irritated that I had not seen the glaring sign………..the sign that told me to not only stay out, but to get lost.  Oh boy………here we go, I thought.  So I just told him that soon we would be leaving, and then I left his room as he closed the door behind me.  Surprisingly enough, the rest of the morning was pretty calm.  He allowed me in his room a few more times………he gladly let me help him with his belt………he listened while I explained that his tiredness was not my fault……….and he actually got ready to leave for his group without a fight.
He talked on the way to meet his ride about all the things that Aaron talks about, which is anything and everything that crosses his mind in that 10 minutes.  “Mom, I saw a boy walking a dog this morning.  That dog is full of fluffy fur!”   And off he went, only pausing for a brief comment here and there from me.  As we neared Quik Trip and the Paradigm van waiting in the parking lot, Aaron said, “Mom, tell them that I got up at 5:09.  Tell them about my stomach and my head and that I’m tired.”   I said, “So you want me to tell them that you got up a little after five?”  Of course, Aaron replied with impatience, “I got up at 5:09!!!!” 
Aaron played the part of being very tired as I conveyed to the driver that Aaron had gotten up at 5:09 and didn’t feel well, etc., etc.  He was satisfied then, got in the van, and off they went.  Off I went, too, driving to Sam’s and thinking of our morning.  I feel like I am walking a tightrope nearly every day.  Hearing that Aaron was up so early……..at 5:09!!…………..was how I started my tightrope walk today.  One foot gingerly in front of the other as I heard him stirring and then as I went downstairs, hoping that he wouldn’t hear me.  Silly me!  Of course he heard me.  I headed across my tightrope as he came out of his bedroom and as I helped him get back in bed.  I was steady on the rope as I heard Aaron sleeping again, but I wobbled when he came downstairs an hour later.
I kept my balance as I suggested breakfast and talked Aaron into eating something, and as we talked about his unique way of watching his recorded programs.  Things got tricky when I mentioned taking a shower and getting ready.  Then I really felt like I was going to fall off the rope when Aaron pointed me to his sign and abruptly shut his door again.  Wobble………get my balance………wobble………..get my balance.  Such is life with Aaron.
I couldn’t completely breathe a sigh of relief until I was driving away after conveying his message to the driver, being sure I got the 5:09 part correct.  This balancing act covers the complete spectrum of Aaron’s life………from serious new medicine issues and behavior problems and seizures………to whether he wants to eat a somewhat healthy breakfast or will refuse good food………to being told to stay out of his room.  Always balancing our decisions about Aaron and our direction with Aaron, wondering if we’re going to fall off that rope at any given time. 
We balance our reactions to Aaron as well, struggling to be patient and loving while knowing at times that we need to be firm and strong.   We balance our time spent with Aaron as opposed to our time spent doing what we want to do……without guilt.  We balance whether to listen to Aaron’s same stories or same issues over and over and over again, or whether to pull the plug and tell Aaron that he just needs to quit telling us this same thing….AGAIN!  And as time goes on, we will need to balance how to protect Aaron with how to release him. 


I’m just very thankful that we have God to steady us when we start going sideways.  Thankful that we have good family and friends who give us love and support and advice and laughter.  And very, very thankful that even if we do fall off the rope……….underneath are God’s everlasting arms to catch us and to gently lift us back onto the rope……….where we will once again put one foot in front of the other and once again walk this tightrope of life with Aaron.

Depressed? Feeling Sad?


Yesterday I drove Aaron to McConnell Air Force Base for a doctor visit.  He loves this time together.  We listen to music and there is much for Aaron to see and to talk about with mom…….who can’t go anywhere else but in the driver’s seat right beside him as he talks and talks and talks.  He talked about road construction and house remodeling that we passed; he talked about trucks that we passed; he talked about the purpose of U-Hauls; he talked about RVs and what they are and what they’re for and what they look like inside and do they have a bathroom and can we get one to take on our next trip back east; he talked about storage buildings and what people do with them and he remembered our storage building in Arizona; he talked about the guards at the gate going on to the air base and why they have to check our ID cards; he talked about all the planes that we passed at the airfield and why are they here and what kind of fuel do they use; and he even talked about the beer bottle he saw on the ground beside us at a stop light!  My ears were very weary by the time we opened the van doors and walked into the clinic.
I had already told Aaron in the van, after he made his famous farting noise with his mouth, that I did not want him making ANY noises when we got  in the clinic.  “OK,” he said……..and then made his other famous “POP” noise with his mouth.  “And not that noise, either!” I added.  And as always, he questioned, “Isn’t that better than the farting noise?”………and I reminded him that I said NO noises – farting, popping, or otherwise.
Check-in went smoothly and I was thankful that our name was called quickly.  After his weigh-in, we were ushered into the exam room by the little medic who looked like she might have been all of 12 years old.  She was sizing Aaron up, I could tell.  Aaron sat on the exam table and promptly began to take his shirt off and to tell her about the rash under his arm.  Our little medic was looking a little shocked, and I was telling Aaron to just keep his shirt on………but he was having none of that.  He was ready to get down to business, much like he does when he plows into Great Clips to see if he can get his hair cut, with me walking behind him as he practically yells out, “Can I get my hair cut!!??” 
So now his shirt was off and the little medic was a little flustered, but Aaron was already well into his story of the rash under his arm……….as he held his arm up high for our little medic to observe.  And she certainly could, since she was seated conveniently on the rash side.  I finally got Aaron to hush while our little medic collected herself and began to fill out the required paperwork.  She was struggling somewhat with whether to ask me the questions, or direct them to Aaron.  Finally, she got beyond the queries about phone numbers and the meds that Aaron takes.  She looked at me and began saying, “How would you rate…..” and then she finished the question by looking at Aaron……”your pain level?”
Aaron was absolutely delighted to have a question aimed at himself.  He had been chomping at the bit, waiting for this very opportunity…….and before I could even part my lips, he had launched into his answer.  “Well!!” he bellowed, “it hurts when I use soap on it!!”  Our little medic grinned and was trying to decide how to put this answer on her chart……and I’m quite sure that Aaron was hoping that she would tell him that he no longer needed to put soap under his arm, as taking a shower and actually using soap is not one of Aaron’s favorite priorities in life.
She glanced at the next question and then turned to Aaron……..not to me……..and asked the mental health question that is always asked at these military medical visits.  “Are you depressed or do you feel sad?” she asked Aaron, as he sat there grinning and wide-eyed at this attention.  Even I wanted to hear this answer, so I sat back in my chair and relaxed as Aaron pondered this unusual question.  But of course he had an answer!  “Well,” he said, “I’m tired of all this!!”  I had to laugh, for my own mental health, and our little medic was even beginning to enjoy this.  I have no earthly idea what she wrote on his chart, but now she was ready to ask the last question.
She turned again to look at Aaron as she asked, “So how would you describe your overall health?”  He didn’t even skip a beat as he answered, “Well, sometimes I have to blow my nose!”  I was seriously thinking that I would have to leave the room as I was about to explode with laughter.  I do believe that our little medic was wishing that she had more questions to ask.  She was relaxed and totally enjoying Aaron’s answers, especially as he expounded on the nose blowing comment by explaining that he doesn’t really blow his nose, but he wipes it on a towel that he keeps for that purpose and Mom doesn’t want him to do that………..right, Mom?……….but that it’s a towel he uses in his room, and on and on and on.  But it was time for our little medic to leave, and soon the PA and the doctor came…….which gave Aaron more opportunity to talk and to be listened to and to answer more questions, as I watched the PA and the doctor smile (they know Aaron) and try to follow his rabbit trails.
And all the while, as we waited for people to come and go from the exam room, Aaron had his eyes on the automatic paper towel dispenser by the sink.  He had talked to me about it and how much he liked those and did I know how they worked……….and I told him NOT to get off that table and go over there to get a paper towel that he did NOT need.  Soon it was time to go and Aaron was putting his shirt on.  I was intent upon looking at the PA and talking to her, when I heard a sound…………brrrrrrrrrrr. 
Yes, of course it was the towel dispenser.  Aaron made a beeline for it and was very happily holding the brown towel when I turned toward him with my mother look, and with an apology to the PA.  But she was laughing and said it was just fine, and Aaron probably would have held up his hand to get another towel if I hadn’t stopped him with my threatening look. 
Soon we were back in the safety of the van, where I let out a huge sigh and Aaron launched into his next list of topics.  “Mom, you know those little interviews they show before movies start?”  he asked. 
Yes, Aaron…….trailers.  He totally disregarded the trailer comment as he talked about seeing an interview for Iron Man 3…….”Can I see that movie, Mom?”   And the movie, Lincoln…….”I don’t know if I want to see that one.”  And of course, “Mom, can I see the Texas Chain Saw Massacre?” 
No, Aaron, you cannot see the Texas Chain Saw Massacre.
He shifted gears in his talking and said, “Mom, the other day when Katie was driving me home she asked me something and I said, ‘OK, babe!’, and she told me not to say that.”  So we discussed why he should not call women “babe” and what it means to respect someone and why the term “babe” is not showing respect………and before I knew it, we were home. 
I tell you, only Aaron can make a simple doctor visit into one adventure after another just by his conversations and his observations.  When we got home, and he was finished with his talking and went up to his room, I had some time to breathe and to collect myself. 
How would I answer the question on this day…………the question about whether I’m depressed or sad?  I worry about Aaron at times, and I get aggravated or embarrassed at times……but my goodness, he makes me laugh!  And laughter is good medicine for body and heart and soul. 
I wonder if our little medic thought of Aaron later that evening after work?  I hope she’s still smiling, too, and has a new insight into all the special people that will cross her path. 

Aaron’s good at that!   


War:  A struggle or competition between opposing forces or for a particular end

According to the above definition, Aaron and I are in a state of war.  We are actually in a state of war on two fronts.  One front has been ongoing for a long time…………the other is fairly new, but escalated today.

Moore War One:  The Fan Wars

Aaron has a tendency to get hot.  Not hot as in angry……well, sometimes he does do that…….but hot as in just hot……like sweaty hot.  Yuck!  Of course, it could have something to do with the fact that he often has his fuzzy blanket thrown over his lap as he sits at his desk and is on his computer.  And under that blanket may very well be long pajama pants, slipper socks AND slippers, and even a long sleeved shirt.  Never mind that we’ve told him time and again that he is way overdressed.  This is how he seems to be comfortable and if Aaron is comfortable then there is a slim-to-none chance that he will change what he is doing.

Aaron’s solution to being hot isn’t to dress lighter, although at times he does put on shorts along with a cooler shirt………while still using that fuzzy blanket.  His solution is to turn on his ceiling fan, no matter what time of year it is.  The whirring of his ceiling fan is a very common sound upstairs where his bedroom is located.

A year or two ago I bought him a little portable fan to put on his bookcase beside his desk.  I showed him how this fan could be used to blow on him and keep him from being so hot.  I thought that this was a great idea and was sure that Aaron would agree.  I should have known better.  Before long, we noticed that the fan was positioned to blow directly on Aaron’s computer………..not on Aaron himself.  So I moved the fan back to the blowing-on-Aaron position……only to walk in later and find it in the blowing-on-the-computer position.

When questioned, Aaron told us that his computer gets hot and so he uses his nice, new portable fan to blow on his computer in order to cool it down.  No amount of persuasion, pleading, demanding, or scientific data showing otherwise has caused Aaron to budge on this issue.  He is sure that his computer is too hot and that it needs the constant blowing of his fan in order to cool down and not explode, I guess.  Aaron keeps his ceiling fan on for himself, and has changed his little blowing-on-Aaron fan into a blowing-on-the-computer fan.

He also thinks that these fans need to be running constantly.  I do not agree.  When we leave the house, I always tell Aaron to turn his fans off.  And sure enough, sneaky Aaron will somehow manage on many mornings to keep those fans turned on……..as he did today.  Sometimes he’ll even go back into the house under the guise of getting something or doing something – but in reality he is sneaking back upstairs to turn those fans on.

So the Fan Wars continue and will for the foreseeable future, I’m sure.

Moore War Two:  The Body Wash Wars

Do you remember Aaron’s body wash that he said contained confetti?  Well, he threw it away one day because he said it was empty.  I rescued it from the trash because it was by NO means nearly empty.  When turned upside down, there were days and days of future showers in that bottle.  Listen, I am the woman who cuts open plastic bottles in order to use all the remaining face wash or lotion or other such things that are in there……..days and days of face washes and lotions I have found inside those bottles!  So no way was I letting Aaron throw away days and days worth of his confetti body wash!

Aaron does not have my thrifty nature.  He also does not seem to appreciate upside down bottles.  He has refused to use the body wash that has gathered in the upside down bottle.  I have persevered, though, even while he got under his sink and pulled out a full, new bottle of a different brand of body wash.  He has used this entire bottle, even while the confetti body wash has remained there, upside down and untouched.

This morning Aaron came into my bathroom and said, “Mom, I threw out those hair detergent things.  When I turned it up and squeezed, it made an air sound.”

Now notice that Aaron said he threw away those hair detergent things…….plural.  But then he referred to the air sound as coming from only one bottle.  Uh-huh.  He took the opportunity of having one empty bottle as a chance to throw both bottles away.  Who does he think he’s dealing with?  An amateur?  No way!

After I got home from taking him to his group, and had turned his fans off, I checked his bathroom trash can.  Yes, I knew it!  He had thrown away his upside down confetti body wash that still has days and days of showers left.  Now that bottle of confetti body wash is perched upside down once again in his shower.  I am not easily defeated.

Problem is, neither is Aaron.  Things could get hot around here!  Wonder if he’d let me borrow his little fan?

Throw ON the Towel!

Here we go again.  I heard it from upstairs…….the sound of the plastic containers full of coffee hitting the floor and then the thump.  My heart sank as I hurried downstairs to check on Aaron.  He was fine, although sprawled on the floor with spilled coffee all around him.   He jerked and dropped his coffee yet again………lukewarm coffee, thankfully.  And thankfully he didn’t throw his coffee containers as he has been known to do when he’s in a rage. This was a true accident, but messy and discouraging none the less.

I was frustrated with Aaron this morning over a couple things already and this didn’t help, believe me.  My compassion for him still hasn’t quite kicked in yet.  He has cleaned up and showered, and seems to be fine.  I hope he’s not bruised.

I just stood and looked at this mess………coffee all over the floor, the cabinets, on and under the frig.  UGH!  And I thought of how many times I’ve just felt like throwing in the towel.  We all do, don’t we, whether we are parents or not.  But we can’t quit.  God doesn’t and we can’t.  Especially as parents……….these children are given to us by God and He wants us to hang in there despite how tough it sometimes is.

So instead of throwing IN the towel, we throw ON a towel.  We clean the messes up step by step, bit by bit. We’ll see progress one day, even if it’s slow to come…………even when we just stand there and don’t know where to start.  God gives patience; and God gives us the same grace toward our children or others that He has extended to us.  We clean up the messes, whatever they may be, and we push forward.

The rest of the day is before us.  It’s up to me now not to mess up my reactions and my attitudes.  I’ll need to grab another towel if I’m not careful!