Category: Special Needs Adults

I Held A Butterfly

 

I’ve had a bit of an up-and-down weekend for several reasons – finding myself sometimes nostalgic as I think of Gary’s and my role as parents to our three wonderful children.  It’s been the most fulfilling calling of our lives, that’s for sure.  Sometimes challenging, too, as it is for every parent.  Now Andrea and Andrew have moved to other states as they pursue their own callings at this point in their lives………..Andrea in grad school studying genetics, and Andrew living his dream of working for a professional NHRA drag race team. 

 

And we have life with our special Aaron, still living at home and treating us to his unique view of life every single day………whether we totally relish his unique view or not.  For at times his unique take on life may be funny……..or it may be interesting………..or eye-opening………..or tiring……….or maddening.   But never dull.  Never, ever dull.

 

This morning Aaron followed me outside where I was picking up some small branches and sticks that had blown out of our trees.  Aaron was happy that Jackson was out with us, too, as we said goodbye to Gary when he left for work and I continued to look around the yard for more sticks.  Soon I heard Aaron say, “Mom!  There’s a butterfly!”  I turned around to look and there I saw Aaron holding the butterfly in his hand.  He was looking at this beautiful butterfly with awe, just as a small child would do.  Therefore, I did the same………bending over Aaron’s outstretched hand as we both admired the intricate markings and brilliant colorings of this special little creature.  It’s something I probably would not have been doing on this pretty morning had it not been for Aaron.

 

I’ve been thinking about that a lot today.  Last night Gary and I talked to Andrea for a long time about her thesis research……..about the rapid sequencing machine that she is privileged to be using………about her research being presented to the DOD……….about her research being published…………about where she might apply for her PhD studies in genetics……….and so much more.  Andrea’s very interesting studies have opened up a whole new world to Gary and me.

 

With Andrew, it’s been so much fun to experience the world of professional NHRA racing.  It’s been pretty amazing to get an inside view of this life through visiting him as he worked at the race in Texas and then to talk to him about his new life……….the traveling………the drivers and their crews……the inside stories and insights……….the new things he’s experiencing and learning………watching him on television…….and for us to stand in the winner’s circle in Texas while I got to hold the winning trophy, a Wally, for real!

 

And just this morning, I held a butterfly, for real!   I got to stand in our driveway and have Aaron show me his wonderful butterfly, and then let him gently slide the butterfly into my hand so that I could experience holding him myself.  Aaron was as thrilled with this experience as Andrea is with her research and as Andrew is with his job in the NHRA.  Once again, I am reminded of the importance of perspective in these matters, and of how true this perspective is in so many areas of life.  My attitude, my perspective, makes a huge difference in how I view these matters. 

 

In sharing life with Aaron, the seemingly small things become big and important.  Sometimes that’s a good thing………and sometimes not so good.  But just like I am excited about Andrea’s and Andrew’s accomplishments and their lives, I want to also be excited about Aaron’s……….or at least appreciative of Aaron’s life, and often downright awed……..I hope.

 

This wonder that is Aaron……….it’s in a butterfly in the driveway.

 

It’s in him putting his plastic Halloween rat on the dashboard last night as we drove to Sonic for his milkshake………and him hoping that the cashier would surely notice it!

 

It’s in exuberantly asking if the Buffaloes beat the Chiefs in football.  The Buffaloes?

 

It’s in being very excited to be in Papa Murphy’s as we ordered pizza on Saturday……and instantly picking up the container of red pepper, telling me that he put red pepper on his Target pizza the day before.   “It was full of hotness, Mom!!”

 

It’s in the joy of playing a simple game of Skip-Bo.

 

It’s in him sleeping with Mr. Snake that he took from Andrea’s room.

 

It’s in him meticulously writing down the times that he goes to bed every night and the times that he gets up every morning in his special notebook………even when he’s groggy from a seizure.

 

It’s in the necklace that he made for me and that he loved seeing me wear.

 

It’s in plopping on the floor in the middle of the vet’s office to pet Kato, the resident cat.

 

It’s in wearing his slipper socks AND slippers, even with shorts, and not caring one whit how he looks.

 

It’s in happily buying Gary a treat at the grocery store.

 

It’s in watching Wheel of Fortune………and yes, even with his VERY loud clapping and yelling.

 

It’s in his childish excitement about his upcoming birthday.

 

It’s in his pure delight with anything and everything that is even one iota out of the norm…………and him not knowing that he is just that…..out of the norm – unique and amazing.

 

It’s in his final good night hug……either because it’s so sweet……..or it’s because I’m so tired that the hug makes me that much closer to quiet sleep.

 

It’s that last knock on our bedroom door to check for one last time on the weather………and the outdoor temperature………..and whether it’s going to rain during the night…………..and will there be lightening……….and thunder……….and should he leave his blinds up………and he might not read before bed……..

 

It’s one of many reasons that we lock our bedroom door.

 

But not our hearts.  I hope we never lock our hearts to Aaron and to all that he teaches us and opens our eyes to every single day.

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.

Is It Dusk?

For several days before the Fourth of July holiday, Aaron had asked if we could go to see some fireworks.  Gary and I decided to drive over to our little town of Goddard to watch the fireworks show there, and so I told Aaron this news on the morning of the fourth.  He was matter-of-fact about it, not showing great excitement but still indicating that he was happy about going to see the fireworks. 
 
We had a laid-back kind of day, not hurrying or rushing about anything.  Aaron asked a few times during the day if we could take our Great Dane, Jackson, for a walk around our neighborhood circle……..but I told him no because the temperature was in the mid-90’s, and big old black Jackson doesn’t handle the heat very well.  We had a late supper, and afterwards Aaron again asked if we could walk Jackson.  This time I said I wasn’t sure because I really wanted to clean the kitchen before we went to see the fireworks.
 
“What time are the fireworks?” Aaron asked as he looked at the clock.  He was hoping that we would have time for that walk.  I told him that the fireworks didn’t start at a set time, but that the paper said they would start at dusk.  And thus began the questions from Aaron……questions about dusk………that nebulous time of evening that has no set time.  If you know much at all about Aaron, you know that he loves exact, set times.  For instance, that very morning he slept late and when he finally lumbered downstairs, the first thing he said was, “Mom!  I slept til 9:23!”
 
So Aaron wanted dusk to have a time.  He wanted me to tell him something like, “Well, Aaron, dusk begins at 9:16.”  When Gary and I finished cleaning the kitchen, I went up to tell Aaron to get ready to leave for the fireworks.  He replied, “So can we take Jackson for a walk before we go?”  I told him no, that we didn’t have time, and he once again asked, “So what time do the fireworks start?”  I reminded him that they started at dusk and he asked again, “When does dusk start?” 
 
Aaron, dusk starts……….well, dusk is when it’s just starting to get dark.   And again he asked, “So what time is that?”  As I walked down the hall, I turned and over my shoulder told him that I wasn’t sure but that it was pretty soon and so get ready!  And we were only beginning.   I will put Aaron’s comments in italics for the rest of this blog.
 
We piled our chairs into the van, grabbed water bottles…….and Aaron brought his two jars of peanuts…..and off we went.  We had barely started driving when we heard Aaron.
 
Is it dusk yet?  No, Aaron, it’s not dusk yet. 
 
When will it be dusk?  In a little while, Aaron.  We drove on, talking about this and that while Aaron made sure that his CD was loud enough for him to hear.  Then we heard……..So when is dusk?  It won’t be long, Aaron. 
 
We found the perfect spot to set up our chairs, and we settled in with our water……..and Aaron with his peanuts………..and he turned to us with,  So is this dusk?  No, Aaron, it’s not dusk yet.
 
Then how long until it’s dusk?  Not long, Aaron.  Just enjoy the people’s fireworks that we can see around us.
 
So they’re doing fireworks.  Does that mean it’s dusk?
 
No, they’re just doing fireworks in their yards. 
 
A short time went by while Aaron drank some water and crunched peanuts.  But to Aaron, the time seemed to be going very slowly.  When is it dusk?
Soon, Aaron, soon.  Look at those cool fireworks that those people are setting off over there! 
 
Will dusk be soon? 
 
Look at those fireworks!  And then Aaron wanted to know if the neighbor’s fireworks were THEM…….the fireworks that we had come to see………at dusk.
 
Are those them?  Nope, those are just some fireworks that people are doing in their yards.
 
So it’s dusk?  Not yet.
 
Then why are they setting off fireworks if it’s not dusk? 
 
Because they don’t need to wait until dusk.
 
Dusk is soon, right? 
 
Trust me Aaron……….it can’t come soon enough.
 
Are those them?!  No, not yet. 
 
But isn’t it dusk?
 
Well……yes…..it’s kinda dusk, I guess.
 
I thought you said the fireworks started at dusk!
 
Aaron, they didn’t give a TIME……..a PRECISE TIME!!!! 
 
There was quietness for awhile……….a little talk about the small dog that was on a leash…….about the little children that toddled past…………Is it dusk?
 
Gary and I were exchanging glances, halfway amused and halfway frustrated…………wondering how much longer Aaron could wait for dusk.  Even though it was actually becoming quite dark, we would NOT tell him that dusk had passed.  Not in a million years!!
 
When is dusk?  Oh, how I wished I hadn’t even mentioned the word DUSK!!!! 
 
I don’t think they’re going to start at dusk.
 
Just enjoy the music, Aaron.  Just enjoy the people, Aaron.  Just enjoy your peanuts, Aaron.  Just enjoy your water, Aaron.  Just enjoy something OTHER THAN DUSK!!!!!!!
 
Finally, finally, FINALLY, the national anthem played and then the beautiful fireworks started.  Aaron enjoyed them but he wasn’t as exuberant as I hoped he would be after the long wait.  I think this waiting for dusk business had taken a toll………had superseded the fun.
 
When the fireworks were over, Aaron hopped out of his chair, grabbed his water bottles and peanuts, and walked quickly to the van.  He came……he waited……he saw……he left.
 
At least on the way home there was NO mention of dusk!
 
Mom, can we take Jackson on a walk tomorrow?
 

 

I almost told him that maybe we would walk tomorrow…….at dusk.  But I didn’t dare!
 

Seeing the Wonder

 

Aaron woke up a little earlier than usual this morning.  I heard him come slowly to my bedroom and knock on the door.  He knocked because the door was locked……….otherwise he would have bolted right in……….which is why I had the door locked.  Anyway, he immediately wanted to show me something about his lip.  His lips are chapped and during the night his lower lip cracked and bled some.  Aaron twisted his mouth sideways as he attempted to show me his damaged lip, and then he silently pointed to the dried blood on his lower lip and on the side of his mouth.
 
Satisfied that I was appropriately impressed, he said, “Mom!  There’s blood on my pillow!”  And with that, he strode with purpose back to his room and returned carrying his large body pillow that he loves.  Sure enough, there was a big spot of blood on the white pillowcase.  To be sure that I understood, he explained, “Mom, the lip area was on that pillow area.” 
 
I thanked him for explaining that, and told him that we would get him a new pillow this evening.  He knew that we had a Wal-Mart trip planned when he returns from Paradigm, so this news of a pillow purchase made him very happy.
 
He and I went downstairs to the kitchen, where I poured his coffee while he took his morning pills.  He spied some boiled eggs in a pot in the sink.  “Mom, what are those?  Eggs?” 
 
“Yes, Aaron, those are eggs.  Do you want one?” I asked.
 
He looked down at the eggs and replied, “No.  I want some……….not one.”
 
I laughed.  He was serious. 
 
“What number is some?”  he asked. 
 
Again I laughed.  Again he was serious. 
 
“How about two?” I queried.
 
“Can I have three?”  he countered.
 
And so I guess that to Aaron, some is not two.  Some is at least three.
 
I agreed that he could have three and then asked him if he wanted them sliced. 
 
“Yes,” he replied, “with that harp.”
 
 
This time I smiled with my back to Aaron as I got out the egg “harp.”  He was still serious about this matter of “some” eggs, while I was again enjoying how fun Aaron’s world can be.  He takes the most mundane of matters and makes it so distinctive. 
 
Later, we drove to meet his group and listened to my Carpenter’s CD.  He was talking about a movie where a robot from the future comes back to the present, and he said, “How come he doesn’t know what type of year it is?”  Just then, I heard the Carpenters sing,”…….there is wonder in most everything I see……”
 
That would be a perfect description of Aaron.  He either sees wonder in everything or he’s wondering about everything, but his take on life is so interesting.
 
Just like us with Aaron.  We’re either scratching or pounding our heads in wonder, or laughing at the wonder of the world that Aaron sees and shares.  I guess he keeps our brains sharp as we try to follow his thinking.  And with that I’ll close.
 
I need to go dry and put away the egg harp.

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!

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?

God is Great……..God is Good

 

Last night I enjoyed a beautiful light and sound show, thanks to our great Creator God.  Just as we were turning in for the night, a pretty significant Kansas storm was cranking up.  Aaron loves storms, and so he was getting all ready to sink into his covers and watch the lightning through his windows that he faces from his bed.  Of course, that was after he made sure that all of his covers were just right and that his clock that was flashing from a previous short power outage was reset – using my cell phone as his reference point since his portable digital clock is broken.  I hoped he was settled as I finally made my way to bed.
 
I’m sleeping in Andrea’s former room right now due to a shoulder injury that causes much tossing and turning on my part, along with pillows and grunts and groans that I feel will bother Gary.  The windows in Andrea’s room face the direction from which the storm was coming, and it’s upstairs so the open, rural view is perfect.  The blinds were staying up so that I would have a perfect, unimpeded view of the storm.  I knew exactly what I was going to do as I climbed into bed and turned the nightstand lamp off.  Worship.  And rest in God’s greatness and power on full display outside.
 
Several years ago, Gary and I were going through a particularly trying time in our lives.  I had been praying for Gary in specific ways as he faced certain stresses and frustrations that were weighing him down.  As I prayed for him, though, I didn’t really know what to pray for.  I just knew that I needed to pray for God to do a work in his life and in our lives together.  God did just that.  He answered my prayer……but not in the way that I would ever have expected, and definitely not in a way I would have wanted.   God moved in a way that caused much personal pain for both of us over a period of many months, and still continues somewhat today.  Yet through that rough time, God showed us more than we could have imagined.  He proved Himself faithful, and He caused us to grow in our walk with Him and in our relationship to each other, to our children, and to our dear family and friends. 
 
Gary and I had gone to Missouri one weekend to spend some time with Andrew at a racing event.  On that Saturday morning in our hotel room, while Gary did some studying for his Sunday School lesson, I opened my Bible randomly and looked down at Isaiah 40.  I began to read that chapter as well as the next one, and was overwhelmed with the reminder of just Who God is.  God was speaking to Israel, but the concepts of His greatness and power apply to all of us today as well.
 
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Reading about the pure power of God in creation had a profound impact on me as I sat on that hotel bed.  This God of mine holds the oceans in His hand!  Imagine that!  He measures the universe with the span of His hand!  He weighs the mountains!  He sits above the circle of the earth, and stretches out the heavens like a curtain!  He calls each star by name!  And to Him, we are like little grasshoppers; nations are like a drop in a bucket or like a speck of dust on the scales; rulers come and go at His command.  I could go on and on from these two chapters in Isaiah that spell out God’s might and our insignificance.  What really struck me was this thought:  How can I doubt God’s ability to handle my life, Gary’s life, or our children’s lives when I catch a glimpse of His unbelievable power and strength?  How can I question whether he can arrange our lives when I just read about how he arranged universes? 
 
When I pray with my eyes on my problems, then certainly I pray in my own weakness.  But when I pray with my eyes on this God of the universe, then certainly I pray in His strength.  And in that strength I can rest, knowing full well that He can absolutely do anything and everything.  When I think in my heart, “Well, I don’t know how on earth God can manage to do this thing that I’m praying about,”  then I am relying on my own power…………and I have none.  It’s good for me to return often to Isaiah 40 and 41, and to be reminded of just Whom I am praying to and relying upon. 
 
God does things that I don’t understand.  In these Isaiah verses, He also asks this question:  Who has directed or counseled or taught God?  No one has done those things!  Who could ever teach this great God?  Yet there are times that I try to take that place in this life and figure things out……make sense of situations……give God ideas of how to work, all the while wondering if He can really do those things for me. 
 
I don’t know why God made Aaron to have Epilepsy and Autism.  But I do know my wonderful God………the God that I worshipped last night as I was nearly blinded by His fantastic light show.  I know that He is sovereign and perfect, and that I can trust His plan for me and for Gary and for our Aaron.  I know that He will take care of Andrea in grad school and of Andrew in his senior year of college. 
 
God is great……..I am not.  That’s the bottom line.  God loves me and He loves my family.  These Isaiah verses also state that He does not become weary or tired; that His understanding is unsearchable; that He gives strength; that He will uphold; and that He doesn’t want me to look anxiously about me. 
 
I relished the time with Him last night, being reminded of His power with every dazzling flash of lightning and every boom of thunder.  I felt small and overwhelmed………but so protected by this all powerful God Who loves me with a fierce love.  He can do anything and everything.  He wants my time and my obedience and my trust. 
 
Everything else He can handle just fine.  

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!

Rocking Together

Yesterday was one of those days.  It was a culmination of several of “those” days that actually became one of THOSE days.  Am I making sense?  Let me once again offer some quotes from Karen Williams in her excellent article – Understanding the Student with Asperger’s Syndrome.  For Gary and I, the title should read – Understanding Our Son with Asperger’s Syndrome (If That Is Even Remotely Possible).  Williams says, under the category of Emotional Vulnerability:  “Rage reactions/temper outbursts are common in response to stress/frustration.”   She goes on to say that those with Asperger’s “………..are easily overwhelmed when things are not as their rigid views dictate they should be.”

I would add that, likewise, parents of Asperger’s children (or adults who behave like children) are at times overwhelmed when things are not as their child (or adult who behaves like a child) wants them to be.  Williams adds, “Affect as reflected in the teacher’s voice should be kept to a minimum.  Be calm, predictable, and matter-of-fact in interactions with the child with AS, while clearly indicating compassion and patience.”

As a parent with an adult (who sometimes behaves like a child) with Asperger’s, I do whole-heartily agree with Williams.  I would also add that perhaps the parent should have a pillow to scream into; a punching bag hanging in the garage to punch on; a blog to write in……………OK, just kidding.  Sort of.

Aaron’s been hung up on a computer game and it’s been all consuming to him.  Saturday was one of those days when he just would not get off the computer to shower, take his pills, or even eat.  Aaron has to reach a certain level of a game before he will turn it off.  This is why we removed Nintendo and PlayStation from our home years ago.  He does much better on the computer, for some reason, but occasionally will revert to these old behaviors.  When this happens, we take the keyboard away and hide it.  Aaron has come to expect this and is usually agreeable about it………..as if it’s almost a relief to have the temptation removed.

Yesterday he was not relieved.  We removed his keyboard Saturday night, so on Sunday he clipped coupons and then napped while our small group was here for lunch.  After his nap, when the small group was gone and a friend who had stopped by had left, Aaron fully expected that his keyboard would be returned.  We had not made it clear that we were not returning the keyboard at that time.  Mistake number one:  Not being clear and consistent, and expecting Aaron to follow along.  Consistency has always been an issue, especially with me.  And inconsistency and change does not work well with Aaron.

Aaron was talking to Gary and me about all of this, and followed Gary downstairs to his study, where they continued to have a pleasant conversation.  Gary was very upbeat and happy.  Aaron was holding a container of his favorite Pringles……………and was becoming agitated.  Soon I heard a strange noise and when I walked downstairs I discovered Gary staring quietly at the mess.  Aaron had thrown his container of Pringles across the room and there was a huge pile of chips and crumbs all over the floor as well as some of Gary’s bookshelves.

Well, well, well…………now what?  Aaron grabbed the container, twisting and squeezing it in sheer frustration as he continued to escalate.  Gary and I followed him upstairs, talking calmly to him………….no affect in our voices at all.  If we yelled, we knew that Aaron would go through the roof.  His eyes were darting around, probably trying to find something else to break.  We stood there, using soothing tones that calmed Aaron a little but were not totally defusing the situation, when suddenly Gary asked, “Aaron, do you want to go to Dairy Queen and get a blizzard?”

It was amazing to see Aaron’s face.  His struggle was so evident as he tried to process this offer.  He was slowly deflating, but he wanted to still be angry.  He paced around the family room and then angrily said, “OK!!  I’ll go!”  He put on his shoes and socks, and then Gary asked him if he wanted to take the van or the truck.  Aaron calmed down even more as he said that he wanted to take the truck, so off Gary and Aaron went……….with Aaron sitting up in the truck with his dad.  I knew what an effort it took for Gary to do this.  He was tired after a hard weekend of working outside, studying for Sunday School, and teaching that morning.  I knew that Gary wanted nothing more than to rest, to relax, to have time for some things that he wanted to do.

His love for his son was evident…………..both of us were loving Aaron at that moment but not really liking him.  While they were gone, I vacuumed up the mess downstairs, wishing that the messes that Aaron makes in our hearts were as easy to dispose of and forget.  When they returned home, Aaron was a different person.  He was full of talk about his M&M Blizzard, their run through the car wash, what road they were on, and the barber shop that was nearby………….”You know, Mom, they have that red and white sign that looks like a spinning candy cane!!”

Later, Aaron and I sat on the glider on the front porch as a thunderstorm moved through.  I love doing that and was happy that Aaron joined me when I invited him to come out.  There the two of us sat on the glider, trying to rock as the wind blew and the thunder rumbled and the rain came down.  We talked………..mostly Aaron talked, of course……………and I kept trying to rock.  You see, Aaron likes to sit forward on the glider and when he does this, he rocks in his own rhythm……….which is the opposite of the way I am rocking.  When I went forward, Aaron went back.  Then when I was going backward, Aaron was pushing forward.  This is not conducive to smooth rocking!  I told him to sit back and relax so that we could rock, and for a minute or two he would.  Then he would sit forward again………..and again we would not be able to smoothly rock as he was moving against my every move.  I just observed, and smiled, and laughed softly at the awkwardness of this supposed rocking.

And I realized how Gary and I have to rock together in our life with Aaron.  We don’t always accomplish this feat, believe me!  Any married couple will agree that it takes time to develop unity in every area of marriage.  Aaron and his issues have certainly been difficult for us at times.  We haven’t always agreed on how to handle discipline, especially, as well as other areas.  Time and maturity and experience have taught us so much.  So many times, I have rocked one way while Gary is rocking in another direction.  This makes for jerky, unhappy motions in our marriage and in Aaron’s life as well.  He needs us to be unified………..and Gary and I need to be a solid unit as we deal with Aaron’s life and decisions that involve him.

Gary blessed me yesterday in how he handled Aaron with love and wisdom.  We were rocking together and the result was smoothness and pleasure in the end as we saw Aaron relax and calm down.  We never know what we’ll face today or tomorrow with Aaron, but we do know that if we rock together with God in the center, then life will be much happier and certainly more peaceful.

Count Your………Our………..MY Blessings!

It’s been one of those mornings.  You know……..one of THOSE mornings.  I went to bed bothered by worrisome issues that I should not go to bed being bothered by……….those worrisome issues.  Can’t end that sentence in a preposition.  🙂    I went to my new location in Andrea’s old room that I’ve set up for myself……..a new desk and an alone place to have my quiet time.  The new location didn’t seem to help.  I felt stifled and ineffective in my time with the Lord this morning.  Distracted…….and thinking that I needed to dodge my prayers that were bouncing off the ceiling, going no where.  Is Satan unhappy about my desire for a more intimate time with the Lord?  Perhaps.

Later, I looked at the weather forecast and the upcoming week of temps above 100 and no rain only increased my weariness.  Our scratchy dog with allergies; laundry waiting to be washed or put away; dishes to take care of; even a Supreme Court ruling and an election in Egypt that I don’t agree with were piling up in my mind.  Talk about taking on the cares of the world.  Come on, Patty.  This is really ridiculous!

After my shower, I heard good old Aaron in the hall.  “Mom?”  I told him that I would be out in a minute.  I could tell that I would have very little patience with him today………shame on me.  He thumped downstairs to take his pills and thumped back up to see if we could now talk.  I again told him to wait……….and when I did open my door, he was in his room and promptly told me to come look at his finger.  He held it up for me as I walked in, and there it was………….his index finger, all wrapped up in a bloody band-aid.

My patience was even less now.  “Mom, last night I had some loose skin and so I used my knife to cut it off.” Oh Aaron.  We’ve heard this story before and I knew what was coming………..and it did.   He wanted to know if he should have used his little pocket knife to cut off the skin; why not?; what would I use?; that he couldn’t help it that the knife slipped, etc., and etc.  I removed the band-aid and saw the raw wound where he had cut or pulled off his loose skin.  I could feel my irritation increasing.  I told him to go shower…………his whole body, by the way, not just his finger!  I know how he thinks.

Aaron showered and then came to my bathroom, where I further cleaned and medicated and dressed his wound.  He could sense my mood and so he scurried on downstairs, deciding to get his own coffee and carry it to his room himself without bothering his moody mom.  Soon I heard, “Mom, I spilled some coffee but I’ll clean it up.”  Oh goodness, Aaron!  Where did you spill coffee?  “On the stairs.  I’ll clean it up!”  No, Aaron…….I’ll get it.  All the while, I was muttering under my breath about how this is the last thing I needed and why did he have to carry the coffee up himself when he’s so shaky and of all mornings…………

Then I saw the spill, which looked more like a gushing of coffee.  It was splattered on several stairs, but one stair in particular was soaked with coffee.  Oh Aaron!  Look at this mess!  Next I saw coffee on the living room floor, so got the Swiffer and mopped that section.  I headed for the soppy stairs, with Aaron saying, “I’ll clean it up, Mom!”  But I grabbed towels and began the clean-up, while Aaron then said, “Here, I’ll help.”  He proceeded to carry a wad of paper towels from the kitchen into the living room and instead of heading for the stairs where I was, he started wiping off the piano.  WHAT??!!  Sure enough, some coffee had splattered onto the piano and Aaron was working to clean up the brown spots…………….while he stood on the still-wet floor.  I went from unhappy to unhappier, all the while muttering about how my nerves couldn’t take much more and of all mornings and please, Aaron, don’t talk right now………..

I continued my shallow thinking as I realized that I would indeed have a bad hair day, no matter what I did to try to improve the mess on my head.  The clothes I chose to wear today didn’t help any, nor did the sandals.  No time to change all that now.  Of all days for me to have a doctor appointment, I moaned to myself.  Little annoyances for the remainder of the morning reminded me of my misery.  Aaron and I hurried out the door, stopping at the grocery store on our way to meet his group.  I had promised him a Cheddar Pasta Salad to take to his group.  Of all mornings to need to leave early, I grumbled.

At the deli counter, as we waited to be served, Aaron began to notice all the dishes.  He leaned over and oohed and aahed over the Deviled Egg Potato Salad, The Layered Salad, the Fruit Salad, the German sandwiches, the Spaghetti Salad…………and his joy over simple food began to silence my distasteful attitude.  He had moved beyond spilled coffee, bad hair, wounded finger, scratchy dog, and hot temps.  He noticed the good things before him.  As we walked out with not only his Cheddar Pasta Salad, but also a bottle of flavored water and some Skittles, he chattered happily about anything and everything.  If I wasn’t listening, I would have missed his observation that the entrance sidewalk at the Warren Theater is, in his words, “…….twinkle stone.  Does it have jewelry in it, Mom?”

I had to pause in my heart and smile.  As we drove to meet his group, I told him that I was sorry about my attitude that morning.  He didn’t say a word, but I  know he filed that apology in his mind.  I needed to say it and he needed to hear it from his grouchy mother this morning.  Later, at Sassy Nails, I sat across from a stranger – another mom – while our toes dried.  We talked and she shared how her sister had died of cancer, and how through it all she had blessings to be thankful for.  This woman, this mom, this sister, had no idea about how much I needed to hear those words.  How easy it is to let the slight troubles of my life ruin my disposition and take my mind off the Lord!

So I have counted my blessings for the rest of the day:
1.  The spilled coffee matches the carpet, especially in the dim light.
2.  A coffee smell on the stairs beats a dog smell any day.
3.  The living room needed to be mopped anyway.
4.  My new pink toes hopefully took the doctor’s eyes away from my bad hair.
5.  I do have hair.
6.  It may be 107 degrees outside, but we have working AC inside.
7.  It may be 107 degrees outside, but I don’t have to be outside working.
8.  It may be 107 degrees outside, but we have water for our thirsty garden.
9.  Our neighbors have to  move for various hard reasons, and the man taking pics of their house this morning wasn’t taking pics of our house.
10.  I have a faithful God; loving husband and children; and Aaron to remind me of what’s important.

And I have forgiveness – God’s forgiveness – and even Aaron’s forgiveness……..unspoken but there none the less.