What I Would Have Missed


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

Tennis Elbow?


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

Sigh.

Singing With Our Mother


My mother was raised in the little coal mining town of Welch, West Virginia.  Born in 1926, she was the last of six children born to Guy and Lillian Hollandsworth.  Grandpa was the principal of the school in Welch.  He and Grandma worked hard to raise their six children deep in those West Virginia mountains.  They instilled in them a love for God; a love for family; a love of culture; and a love of good music.  
Mom, fourth from the right on the front row
I loved hearing our mother talk about how she met my dad.  They met when Mom’s brother, Luther, married Dad’s sister, Mary.  Beth saw in Jack the sort of man she had never come across.  He was kind and thoughtful, a man of quality to whom she was drawn.  And as they became acquainted, they each learned something that helped seal their interest even further……they both loved classical music.  Dad was just a farm boy from Oakvale, West Virginia, who worked for the Norfolk and Western Railroad………and Mom, from a coal town deep in the mountains, was teaching Home Economics.  But quality music was important to them, so their mutual love for the same music was important as well.
Our home was full of music as we were being raised in Princeton, West Virginia.  It seemed that music was always playing on the old record player, and later the newer huge stereo cabinet in the living room.  Most of what we heard was classical, but Mom and Dad also loved the hit musicals.  I bet all five of us kids still know the words to the songs from Sound of Music, Carousel, South Pacific, and Oklahoma.  Christmas was full of beautiful and fun Christmas music.  I remember children’s records full of fun songs, too. 
Mom, on the far right, as part of the Laidley Hall Trio, 1946-47
Mom, fourth from the right on the front row
Mom didn’t just love to listen to music.  She also had a beautiful voice, and sang in choirs and madrigal groups during her high school and college years.  She was an accomplished soloist and sang in many area churches for revival services and other occasions.  A favorite song of hers…….her signature song, really……was “I’d Rather Have Jesus.”  This is the song she was singing in a little church during a revival service one night in the early 1950’s.  Jimmie Jones was preaching that night.  Mom stood up to sing, and God used the words of that song to pierce her heart.
 
I’d rather have Jesus than silver or gold;
I’d rather be His than have riches untold;
I’d rather have Jesus than houses or lands;
I’d rather be led by His nail-pierced hand
Refrain:
Than to be the king of a vast domain,
Or be held in sin’s dread sway;
I’d rather have Jesus than anything
This world affords today.
As Mom sang those words, she knew in her heart that she had never asked this Jesus into her heart to be her Savior.  She knew that she was standing before those people singing a lie with her beautiful voice.  She walked down the aisle that night during the invitation, and Preacher Jimmie led her to the Lord.  Dad had accepted Christ months earlier but hadn’t said much to Mom about it for fear of angering her.  Now they were united not only in marriage, and children, and their love of music…….but they were spiritually united in their love for the Lord that grew and grew over the following years.
Now our family had the completed element of being raised around God’s Word, and being active at Johnston Chapel Baptist Church where Preacher Jimmie was our pastor for all of our growing up years.  Now, too, were added beautiful hymns to the music that graced our home every day.  
All of us sang and soon we children were singing together for church.  I remember one Saturday that we even sang…..live!…….on our small town radio station.  We sang and Preacher Jimmie preached, and I have no idea how we sounded way back then.  We continued to sing as we got older, and were known as the King Sisters when John left.  And during all this time, Mom was still singing solos and blessing many with her pretty voice.
Many years have gone by since those days of early marriage and raising five children.  Dad went to heaven in December of 2008, during the season of Christmas carols and Christmas joy that Mom and Dad loved the most.  And now our mother has Alzheimer’s, lives in assisted living, and doesn’t know any of us five children or our spouses……or her grandchildren or great-grandchildren……or even her Jack, her husband…..Dad.  We can’t ask her for advice or ask her to tell us a familiar family story or ask her for a favorite family recipe.  All of that is gone.
Gary and I went home a few months ago.  Everyone was there except for Jimmy and Kathryn.  As we gathered at Jan’s house, near the end of our day with everyone, I suggested that we sing to Mom.  A friend of mine, Bev, had told me about singing to her mother who had Alzheimer’s and how her mother remembered the words……and it was their last real connection.
So we stood around Mom that evening at Jan’s and we sang “Great Is Thy Faithfulness.”  To our surprise and delight, Mom joined in.  She knew most of the words, and then to our complete surprise, she sang the descant at the end…….her voice still beautiful and sweet.  You can click on the link below to see the video of her singing that song.
We sang a few other hymns as well, and then we decided to see if we could make it through our family song…….Dad’s favorite song……”Tis So Sweet To Trust in Jesus.”  Again, Mom sang most of the words in her sweet voice.  And at the end, as you can hear in the below link, she tried to describe how special that song was.  She couldn’t put her finger on why it was special……she couldn’t remember exactly……and she couldn’t find the words……but she knew.  Deep inside she knew that this song was a very dear part of our family, and a dear part of her Jack……of Dad.
I’m so thankful that we sang with Mom that evening.  We were all blessed beyond measure for that time with her.  Her heart was happy as she sang.  What memories those songs stirred in all of us, including Mom. 
Memories of wonderful parents who taught us about the Lord…..who filled our hearts and our home with music……but more importantly, filled us all with love.  And over the years, as we’ve all experienced both joys and sorrows, we can fall back on the love they gave us and the Lord they made sure that we knew personally.  Many parts of our early life are gone…..and now the Mom we’ve always known is gone……but the hope we have in Christ will never be gone.  The certainty of heaven will never be gone, where we can sing together forever! 
Tomorrow is my mother’s birthday.  She will be 88 years old……and she won’t know that it’s her birthday…..or how old she is.  But as friends and family gather around her, I hope that she knows how much she is loved.  And I hope that she joins in as everyone sings “Happy Birthday!”  
I bet she will, with a smile on her happy face and a twinkle in those beautiful eyes. 
We love you, Mom!  Happy Birthday!
And thanks for showing us over the years that you really meant it when you sang, “I’d Rather Have Jesus.”  And that we needed to mean it, too.   

The Funny and The Sad


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

We Eat Lunch at 12:00


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

I Worked on a House!


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

My Wormy Cucumber…..and Aaron


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

A Bathtub and Other Stuff


My goodness, is August nearly over already?!  I seriously don’t know where the time goes anymore……and I realize that I’m sounding just like my Grandma used to sound.  Funny how that happens.  I feel like Aaron when he came into the kitchen after we had been into August a day or two.  He saw that my calendar page had been flipped to August and he said, with great surprise, “I didn’t know it was August!  I guess I wasn’t paying attention.  I was still on that July thing!”
Some days I think I’m still on that March or April thing!  Then I walk outside and am hit with these typical Kansas August temperatures.  UGH!  The temperature was 102 today when I took Aaron down to get him a haircut at Great Clips.  His name was called quickly because I had signed him in online.  It’s always nice to be called fast, probably more for me than for Aaron.  I never know what Aaron will say or do while we sit there in that small waiting area……….but I do enjoy the looks on the faces of the others sitting there with us as they try to figure out Aaron.  Good luck with that.  But today he didn’t have time for hardly a word before his name was called.  He stood up and I reminded him to hand me his glasses…….and as always, he stood there and also took off his watch.  He would have also given me his ring if he was wearing it.  I always wonder if the other patrons are waiting for him to remove his shirts and shorts. 
The haircut and beard trim went quickly.  Aaron answered the hair dresser’s questions but didn’t make any conversation today.  I handed the girl his debit card, which she swiped while he was putting on his watch and his glasses.  He signed the receipt, humming his monotone hum the whole time, which made both the hair dresser and me smile.  Then he grabbed a Dum-Dum lollipop from the gift display on the counter while I took the Great Clips pen from his hand before he stuffed it into his pocket.  I know him so well.  But not well enough, because while I finished writing her tip on the receipt, Aaron said that he would be right back as he quickly turned and was out the door before I knew it. 
Oh brother, I thought!  And just as soon as I got to the Great Clips door to leave, Aaron was barreling back inside……all smiles……..telling me that he had tried to open the door of the martial arts studio nearby.  He has asked and asked and asked about that place, so he decided to grab the opportunity and check it out himself.  Too bad it was closed…..for Aaron it was too bad.  Not for the unsuspecting people in there who would have been loudly interrupted if Aaron had been allowed to barge in.  I must remember this the next time Aaron gets his hair cut………or somehow manage to always take him on Sundays, when the martial arts studio is closed!
Aaron has had some intestinal trouble today, which for Aaron nearly always means diarrhea.  Usually he comes up to me and very softly says, “Mom, I have a problem.”  And I nearly always know what he means.  The other day he said, “Mom, the way I pour my cheese, it gives me diarrhea.”  
No, Aaron, it’s the way that you EAT your cheese cubes that gives you diarrhea.  More specifically, the amount you eat…….which is the amount you pour in your bowl.  OK, maybe it IS the way you pour your cheese that gives you diarrhea.  I need to think about that.  He’s usually right, in the long run.  Sorry for the pun.
Speaking of puns and irony, Aaron doesn’t get those at all.  He loves to read the comics, at least a few favorites, every day.  He read this comic in the paper during supper the other night.  I so wish I could describe the conversation between him and Gary as Gary tried to explain it to him.  I should have just grabbed my paper and started taking notes right then.  Aaron totally didn’t get the comic.  I ended up with the remnants of the conversation after supper as Aaron still tried to understand what the bowling pins meant. 
“I get it!” he finally said.  “They’re just gonna ACT like they fell!”
Well, not really, Aaron.  And off I went again, trying to explain it.
“I get it!!” he said again.  “They don’t want to be hit!”
Again I explained.
“I get it!!” the broken record repeated.  And I waited.
“They’ll act like the fell DOWN!!!”
Whatever.  Yes, Aaron!  Hahaha!  Isn’t that funny?!  
He agreed and we were both happy.  Sometimes I just have to come to grips with the fact that he will NOT ever get it…….ever.  And he is happy, so I may as well be, too.
I got him a new set of sheets last week.  He was with me when we found them at Big Lots and he LOVED them.  Cheetah print sheets……….right up Aaron’s alley for sure!  They went very well with his animal print fuzzy blanket that he loves.  I washed the sheets and last Saturday we put them on his bed.  He was very happy.
But not for long.  He came downstairs a couple mornings later and with great disappointment told me that those sheets just didn’t work.  I asked what was wrong with them and off we went into the world of Aaron trying to concretely explain the reason that the sheets didn’t work.   But he just couldn’t do it.  He couldn’t explain what was wrong, even as he used hand gestures and tried to answer my questions.  We went up to his bed and I saw that the top sheet had gone way down, so we fixed it and I hoped for the best.  
The next day it was the same story…..and the next.  He said the side came undone.  He said the sheet was too big.  He said it was the leopard part that didn’t work……although I thought they were cheetah, but I didn’t say that.  It was already too confusing.  I told him that I thought the texture of the sheets made them slick.  “Yeah!!” he agreed.  “They slick off of me!!”  There!  We had it!
Finally on Wednesday we just took the top sheet totally off and put on another top sheet.  However, the bottom fitted sheet kept wrinkling up……and with Aaron’s tactile issues, this wasn’t working.  It was a HUGE relief yesterday to take the sheets completely off and make his bed with a tried and true pair of sheets that I know will work.  The cheetah/leopard sheets are cleaned and nicely folded, waiting for the next donation pick-up.  
Lots of other things happened this week.  Let’s see……he stubbed his toes, but they’re OK.  Aaron goes on and on when something like that happens, wanting to talk it to death and figure out every aspect of his stubbed toes.  He finally pointed to his toes and said, “Mom, it was just these two toes.  Have you hit your few toes before?”
I assured him that I have indeed hit my few toes before and it sure felt like I had hit LOTS of toes.  And he understood that and he agreed.
Wheel of Fortune finished up their Spa Week.  Aaron was very interested in just what a spa is and what one does at a spa.  He finally felt like he had a handle on it…….unlike the bowling ball comic……and couldn’t wait to share his understanding with me.
“Mom!  A spa is where they get in a bathtub and other stuff!”
I wonder if I want to know what the other stuff is.
And I have just written about a lot of “other stuff” that has been our week with Aaron.  I could write a lot more “other stuff” but I should stop here…..for your sake.  I always have more stuff, trust me, after each day with Aaron.
Tomorrow we start a new week.  New ups.  New downs.  New stuff.
Here goes!

Lessons From the Lone Tiger Lily


In our back flower beds we have two patches of Tiger Lilies.  They were there when we bought this house 15 years ago.  Every spring they faithfully poke their shoots out of the ground and quickly grow.  Sometime in early to middle July they burst into bloom, with their bright orange color taking center stage for several weeks.
 
This year was no exception, but somehow I thought they didn’t appear to be as strong and as vibrant as in other years.  They bloomed later this year, too.  They just didn’t seem to be the same old Tiger Lilies that we had enjoyed in previous years.
A couple weeks ago we had a thunderstorm during the night.  Between having the windows closed, the air conditioner running, and the dulling effect of sleep, it was hard to tell just how strong the wind blew or how hard the rain fell.  I got up that morning, and as soon as daylight hit I opened the kitchen blinds.  Instantly I saw it……the patch of Tiger Lilies, stripped bare of their pretty petals and standing there with nothing but their fading leaves.  The storm had blown off all the petals.  They looked stark and ugly in the morning light.
Every single Tiger Lily stalk was stripped bare of its beauty……except for one.  There in the midst of all the sad stalks was one lone Tiger Lily that still carried its orange petals.  It was actually only one part of a stalk, but there it was, alone with its blooms…….standing tall in the midst of all the damage surrounding it.
 
That lonely Tiger Lily stood there for days, even through several other storms, with its petals intact.  And every time I looked at it I thought of a verse and I pondered the lessons that this little Tiger Lily was teaching me.  The verse:  “Be strong in the Lord and in the power of His might.”  And the lessons are many.
I’ve never seen a time when so many are so burdened.  I see it in the world……ISIS, Syria, Gaza and Israel, Ferguson…..I don’t need to keep that list going.  Even the death of Robin Williams hit many people deeply.  It’s exhausting to watch the news.
And then closer to home, in our own families and lives, so many are facing issues of deep concern.  Death, illness, financial hardship, marital stress, worries about children, pressures of all sorts, hurts and disappointments……
I don’t mean to sound depressing, but this is just how life is right now for so many.  And even for those of us who walk by faith, who trust in the Lord, who try to lean on Him for our needs…..we can find ourselves overwhelmed and ready to just give up.  We feel as battered as my bare Tiger Lilies……like our beautiful petals are just about to turn loose and leave us stark and alone.  Why read our Bibles?  The words seem empty.  Why pray?  I don’t feel like God is listening and my mind wanders.  Why obey?  Where has it gotten me?
These are lies of Satan.  These are his ways of stripping us of our beauty that Christ has given us, just like my ugly Tiger Lilies that I saw that morning.  I find it very interesting that Paul, when he was encouraging the Philippians to keep maturing in their faith, told them to press forward……to forget what’s behind and to reach toward what lies ahead.

Listen to this contrast in Isaiah 1, where Isaiah was describing sinful Israel.  He said that they had abandoned the Lord and turned away from Him.  Guess what that phrase “turned away” means?  It means to estrange themselves backward.  Going backward…….pulling away from the Lord and going backward instead of forward.

 

There’s my single Tiger Lily again……standing up and standing strong no matter what was going on around it.  Even when all the other Tiger Lilies let go and gave up, this one stood strong…….like he was pressing forward instead of going backward.  And that’s what we need to do.  Don’t give up when things get tough!  Stay true to God…….keep reading His word…….keep praying…….keep obeying…..keep walking in His ways…….keep trusting.  We may not feel like it.  We may be tired and discouraged.  We may even doubt God.  But don’t go backward…..keep going forward.
It reminds me of a verse from the old hymn, The Solid Rock:
          His oath, His covenant, His blood
          Support me in the whelming flood;
          When all around my soul gives way,
          He then is all my hope and stay.
Stand tall.  Stand strong.  Look forward.  And keep your petals on!
         

Couponing Done RIGHT!


Most of you know that Aaron loves to cut out my coupons on Sunday.  Only on Sunday.  He will not touch a coupon to speak of on any other day.  And I’ve blogged about his insistence that only he can cut the coupons, no matter how tired he is or grouchy he is.  Mom is not allowed to touch the coupons because I do not cut them out correctly.  He also has his trash can that holds the tiny little clippings from where he cuts the strips of paper into smaller pieces……and the trash can that holds larger pieces of paper……and his carefully orchestrated stack of left over pages from which he cut the coupons……..and then his coupon box in which each coupon is carefully placed.
It’s exhausting.
I usually try to sneak a peek at the coupons on Sunday mornings before he sees them.  That way I can remove pages of coupons that contain items I won’t buy.  This saves Aaron a lot of time.  However, he has seen sections of coupons that I am hiding from him when I buy an extra paper……and war breaks out.  He insists on cutting them out, no matter how tired he is…..because they are coupons……..and they have dotted lines……..and they must be cut.
 I cleverly look at the coupons before he gets out of bed, if possible.  I hide the coupon pages I remove deep under all the sale papers and stick them in the middle of the newspaper that will be put in the recycle bin later.  Sometimes when I am in the middle of this covert mission I hear him start down the stairs, so I hurriedly shove coupon pages here and there as I try to hide all evidence of my trickery.  I feel a little breathless and guilty as he enters the kitchen.  He hasn’t caught me yet, but I dread the day that he might.  
Aaron does a little of his own hiding, too.  I saw it this past Sunday as I walked through the family room.  There under the bench that sits beside where he clips the coupons lay a couple pieces of paper.  I leaned over closer and saw that the papers were store coupons.  I had put them into the coupon box a couple days earlier………..the coupon box that Aaron uses to hold newspaper coupons.  
  
 
Silly me.  Don’t I know better?  The coupon box holds the coupons that Aaron cuts……on the dotted lines………just right.  
 
Store coupons are not newspaper coupons.  Store coupons were not clipped from the coupon pages on a dotted line.  Store coupons have their own place, even if it’s under the bench.  Store coupons do NOT go in the same box as newspaper coupons.  
But I’m a little devious sometimes.  I have put the store coupons back into the newspaper coupon box.  Hehehehe!
Let’s see what happens this Sunday.