Friday, December 30, 2011

Where is He From?!

Aaron notices a person's characteristics and will, of course, talk about them.  We just usually hope he'll wait to do the talking until he isn't in that person's presence.  That's because often his observations are.......well.......blunt, let's just say.  Not necessarily complimentary.  In other ways he may even sound derogatory, like talking about some one's skin color, eye shape, etc.  Those are very touchy subjects and we have talked until we're blue in the face to him about not saying anything about any one's race or gender or ANYTHING!!!  Just be nice to everybody, Aaron, and appreciate their uniqueness.  And actually, if our faces turned blue I can only imagine what Aaron would have to say about THAT!!

We have taught Aaron that God loves all people and that we should love all people, too.  So when Aaron talks about someone, he isn't doing it in a malicious way.  It's just that he notices everything about his surroundings and the people in those surroundings - and he WILL talk about it, do or die!  He'll observe someone and then say, "That's weird!"  or  "They're weird!"  -  and off he'll chatter as he tells us why they are "weird."  It may be hair color, piercings, weight (look in the mirror, Aaron!), accent, skin color, or any number of other personal traits. 

Recently he told me that he was eating lunch in Subway when he was out with his group.  He said that he noticed a "little child" sitting with her mother.  This child had a mark on her face.  Aaron was intrigued by this mark.  I stopped as Aaron told me this incident and was looking for a chair to sit in because I just knew that Aaron had probably done something very insensitive.  I was right.  Aaron asked the mother, "Did your child get punched in the face?" 

Oh.     My.     Goodness.

Since I had not received a phone call about Aaron being banned from Subway or arrested, and he didn't have a slap mark across his face, I was hoping that this mother understood and was patient with Aaron.  He said that the girl's mother told him it was a birthmark.  Bless her heart.  I know that Aaron's remark may have opened a wound and I appreciate what I assume was kindness that she showed toward Aaron's insensitivity.  I also have to say that I am thankful I wasn't there to suffer the embarrassment that this would have caused.  Sigh.  Anyway, Aaron wanted to know all about birthmarks and so that led to a long conversation about what a birthmark is, and what NOT to say.  Aaron has a very hard time with what NOT to say, believe me! 

Today he was watching TV before he left for his group.  He was fascinated by a man who was talking with an accent.  "Mom, that man is talking with an accent from the west."

From the west? 

"Yeah!  You know, like from the European." 

No, Aaron, I have no idea what an accent from the west that is also from the European sounds like.  But without looking, since I couldn't see the TV, I'd say he sounds like he's from India.

"YES!!!  Like my short little doctor with the dark skin who is from India!!" 

See?  Aaron's intriguing little doctor from India is full of characteristics that capture Aaron's attention - and he doesn't miss any of them!

The staff from Aaron's day group that drives him home was another person of interest to Aaron.  Her name is Tau.......not sure of that spelling but it rhymes with "wow."  Which is what I said when Aaron told me one day, "Mom, my staff who drives me home is named Tau.  I think she's African!" 

Really, Aaron?  Tau does not sound remotely African to me, but I realize that I could be wrong. 

I wasn't.  Aaron was delighted when I met Tau one day in our driveway when she dropped Aaron off.  Tau is as Oriental as she can be.  In front of Tau, Aaron bent over at his waist and rubbed his hands together in delight as he told me to ask her where she's from.  Oh Aaron.  Tau just laughed as I told her that Aaron was wondering where she was from.  She answered with a smile and said, "I'm from Vietnam."  When I told her that Aaron thought she was African, she threw her head back and laughed loudly. 

We look at maps with Aaron.  We point out where country's are located.  But we don't like to talk about how people look and that this person who looks this way is probably from this country.  I don't know - maybe we need to because I can only imagine what Aaron has in mind when he talks about someone who lives in Vietnam but is African with an accent from the west that is from the European. 

Talk about global!!

Wednesday, December 28, 2011


After asking and asking for many nights in a row, Aaron and I finally got to play a game of Skip-Bo tonight.  He had already asked the familiar question several times since he got home from his group.  "Mom, can we do something tonight?  Maybe play Skip-Bo or do our backs?"  So when I went up to his room and asked him if he wanted to play a game of Skip-Bo, he gave a very enthusiastic "Yeah!!" 

I went on down to the kitchen table to move everything out of the way and shuffle the cards.  Soon I heard Aaron's heavy thump, thump, thump down the stairs.  There he came, carrying his ever-present clock and his hand towel that he takes everywhere.  The towel is for him to wipe his hands on when he eats a snack.  Napkins are for meals and the towel is for snacks.  He detests getting his hands messy with crumbs, salt, - or anything!  The towel is his lifesaver for keeping his fingers clean. 

Soon he had chosen his snack - tortilla chips - one of his favorites.  You can see in the picture that he got out two bowls.  One bowl holds some chips.  The other bowl holds any crumbs that fall when he bites the chip.  No, crumbs cannot fall back into the chip bowl.  Such a thing is not allowed at all!   He takes a chip from the chip bowl, bites the chip while leaning over the crumb bowl, then gives the chip a few shakes into the crumb bowl, and repeats the process until the chip is eaten.  As soon as the chip is all in his mouth and his hand is empty, he reaches over to his towel and wipes his fingers clean.  Every single chip is eaten this way..............bite the chip, shake the chip over the crumb bowl, bite the chip again, shake again, and wipe his fingers when the chip is gone.  Very methodical..............very interesting...............very Aaron.  Tonight he said, "Mom, the people who made these chips didn't do a very good job."  When I asked why he thought that, he replied, "Because they're bubbly!"  Yep, the chips had little air pockets that made more crumbs than usual when he bit them, so his crumb bowl was getting very crumbly as he shook and shook each chip.   

Shaking the chip into the crumb bowl - with his towel by his side.

Skip-Bo is Aaron's favorite game and he never tires of playing.  He likes how sequential it is - orderly and sensible.  He rarely uses the strategies that the rules recommend, yet he often beats me.  I do have to watch him because he can at times be a sneaky cheat.  I know that's not a character trait to admire, but I have to say that his ability to think of ways to cheat shows me once again that he really is smart.  Some days I'll take it in whatever form it comes! 

He likes to keep a record of our wins, as you can see in the picture.  I'm swallowing my pride and showing you that he is WAY ahead of his mother!  He usually puts Mom in the right column but for some reason on this sheet it says Moore...........but that's me.  You can tell because I'm way behind.  Maybe I need to double check his counting.  He may be cheating at that, too! 

Playing Skip-Bo is a good way for both of us to unwind at the end of the day.  It's a great chance for Aaron to talk and for me to hear more about his day - or what he's reading - or what he has eaten - or what movie he wants to see or to buy - or what the weather is or the temperature outside according to his faithful clock - or how annoyingly bubbly his tortilla chips are. 
Whole lotta shakin' goin' on!!

Tuesday, December 27, 2011

Christmas Routine

I just wanted to write a brief note about Christmas.  It's been a delightful and very busy week with our Christmas preparations and celebration.  Gary's sister, Sandra, was able to be here with us for the fourth year.  We have so much fun as we shop and cook and wrap presents and watch football.  It's a fun time and we love having her come to be such an important part of it all!

Gary and Sandra

Aaron asks for days before Sandra comes about when she's long she's staying..........what we're doing when she's here............what will our Great Dane, Jackson, think..........will he still have to go to his day group, Paradigm............and whatever else crosses his mind that he feels he must put into a compartment and store away for the week of Christmas festivities. 

Aaron still wants his routine to be as much the same as possible during the Christmas rush and that just hardly ever happens.  Every day I hear the familiar question:  "Mom, can we do something tonight?  Maybe play Skip-Bo?  Or tickle our backs?"  I tell him that I doubt if that's going to happen because of so much else going on.  And he says, "Well, tell me if we can, OK?"  He'll start heading upstairs to his room, then clomp back into where I am and say, "You come and get me if you can do something, OK?"   I assure him that I will and off he goes toward his room, only to return, "So you'll come and get me if you can do something?"   Yes, Aaron, I said that I would.    I hold my breath as he lumbers off................and soon he's lumbering right back.   " you think you can do something?  Just come upstairs to my room and get me if you can, OK?"    

Deep, cleansing sigh...............from me................."Yes, Aaron, I will come and get you if I can do something...........BUT DON'T COUNT ON IT TONIGHT!!!!!"      And I know that tomorrow we will have the same conversation...........and the day after..............and the day after..........

On Christmas Eve, for as long as we can remember, we have driven around town and looked at the Christmas lights.  It's our little family tradition.  So days before Christmas Eve, Aaron asks and asks and asks some more just for good measure about whether we are going to look at lights, and if Aunt Sandra is going, and if Andrea and Andrew are going, and am I going, and can we take Jackson.  Yes to all the above except for Jackson.  Our 200 pound Great Dane cannot fit into our van with the rest of us.  Aaron understands, though disappointed, and so on Christmas Eve we drove through several beautiful neighborhoods of sparkling lights and oohed and aahed over the variety and the twinkles and the colors.  Aaron had a stomach ache this year and wasn't very enthusiastic but nothing would have stopped him from going!

He woke up on Christmas morning feeling much better and very excited about the coming day.  Before I knew it, he was settled in his TV-watching chair in the family room with his blanket over his legs, his clock perched beside him on the end table, his trash can from his room on the floor beside the chair, and his stocking on his lap.  He rummaged through the stocking and finally emptied it on his lap, and soon was eating his candy.  No time to waste!  Each piece of candy wrapper was dropped into his trash can, and the slipper socks that were in the stocking were put on his feet right then and there.  I warned him of another future stomach ache and told him of the yummy brunch soon coming and so he put the candy back into the stocking for future use! 

As soon as our brunch was over and the kitchen cleaned, we all gathered around the family room and Gary led us in a devotional time of reflecting on the wise men and their gifts that they brought to baby Jesus.  Aaron sat as quietly as anxious Aaron can sit, petting Jackson and stealing a piece of candy every minute or two.  Then it was time to open gifts and as you can see in the picture, Aaron had his trash can beside him and his knife there.  He uses the knife to "help" open his presents and certainly to get the wrappers off his new DVDs - immediately.  Right there, on the spot, the job must be done and the papers MUST go into HIS trash can - not into the bags that the rest of us use.  And notice his ever-present clock by his side.  Telling him the time, for whatever reason he feels the need to know, and the inside and outside temperature - for whatever reason he also feels the need to know that information.  The time is soon over, Aaron tosses his gifts onto his bed or floor, he joins us for our Christmas dinner, and returns later to join us as we play Christmas bingo. The game took a long time and Aaron got grouchy.  He was glad when it was over, and he could return to his room, to his structure, to his own space and his own world.  The day was over and now life could return to normal. 

"Mom, do you think that tomorrow night we could do something?  Maybe play Skip-Bo or do our backs?"  

And Gary wonders why I sigh so much.  I love you, Aaron.  Merry Christmas!

Thursday, December 22, 2011

The ER Visit

Aaron fell on our stairs awhile back and skinned up his leg.  When something like that happens, he will talk and talk about it - to the point that I sometimes hardly pay it much attention.  Yes, Aaron, your leg hurts but it's because you fell and now it's healing nicely and you'll be fine and.............   So this week, on Monday night, I didn't give it much thought when he complained about his leg hurting.  He went on about it, though, and so I finally told him to pull up his pajama pants leg and let me look.  I was shocked to find his left leg and foot swollen, red, and hot.  Last June Aaron had Cellulitis in his left arm and this sure looked like the same thing. 

Tuesday morning found us down at McConnell Air Base to see Aaron's primary care doctor.  The doctor and PA there were concerned that he might have a blood clot, so they sent us straight to the emergency room for a scan of Aaron's leg.  This was turning into a huge and rather exciting adventure for Aaron.  He doesn't usually have any fear of medical procedures, which is a blessing, but instead views it as another time to see different things and talk to new people.  And of course, our quick in-the-van Burger King lunch only confirmed to him that even a very sore leg can have some pretty decent pay-offs!

Soon we were pulling into the Saint Teresa Emergency Room parking lot and Aaron limped inside with me in the lead.  We were immediately checked in and ushered into an exam room.  Aaron loves talking to the nurses and EMTs, and they were soon smiling at some of his comments.  It's hard to get an accurate picture of what's going on with him because when they would ask about his leg, he would go off about falling on the stairs or about how it hurt at Paradigm - like they should know all about his day group - and on and on he would go - so I would take over and explain everything while he sat there trying to interrupt with his own story.

The exam by the doctor led to an ultrasound of his leg and the good result of no blood clot.  This was Cellulitis for sure.  I was hoping that the doctor would confirm my theory that the infection was a result of Aaron not keeping himself clean enough and would give him a nice lecture on how to take a better shower.  Aaron knew that this is what I believed - I had discussed it with him earlier.  So I asked the doctor about this issue and he answered, "Well, actually, that has nothing to do with this infection."  Whereupon Aaron quickly turned his head to me and stuck his tongue out at me.  The doctor thought this was hilarious and said to Aaron, "So you won this one, didn't you?!"  Aaron was very pleased with himself for sure!

The nurses put an IV in one arm and drew blood, and then took more blood from the other arm.  Aaron barely flinched when he was poked and stuck.  He was focused on the bag of Mike and Ikes he had seen in the vending machine in the hall.  He spied those right away and they became his focus from that point on.  He got to watch some television - Looney Tunes! - and then napped while we waited for the scan results and during the hour it took for the IV antibiotic to be dispensed.  Finally we were released and went on to Dillons to get his prescription filled - and walked out with some Mike and Ikes in tow, of course!

It was fun to listen to Aaron's stories that he told the family after we got home.  His observations are funny and interesting.  Here are a few:

"They put pipes in my arms!"  

"Those nurses are my servants.  They did things for me!"

"I had to take my pants off!!  And they didn't give me any to put on!!!"

"That woman put lotion on my leg when she did the scan!"

He notices everything - how the TV remote was different, the kind of blanket they put on him, the sound of his blood flow during the ultrasound, etc. It's all an adventure to him and a chance to tell many stories when he got home.  At home, he went up to Andrea, who works there at St. Teresa, stuck his bandaged arms out and said, "Here.  You work at the hospital.  Will you take my bandaids off?"  He does love the pampering and attention!

But the best part was yesterday when he said,  "Mom, is my Cellulite better?"  Cellulite!  I don't know about your Cellulite, Aaron, but let me tell you about mine! 

Monday, December 19, 2011

Football and Bulldozers

Football season is not over - for the nation and for the Moore family.  Aaron is still enjoying the game whenever we have it on...........and he still has interesting and varied insights.  Yesterday I had football on while I wrapped Christmas presents.  Aaron's eyes lit up when he walked into the family room and saw the familiar Chiefs on the screen.  Up to his room he clomped and soon returned, wearing his doesn't matter what time of day it is - football is better watched while wearing comfy pajamas.  He also was dragging his worn, fuzzy blanket to put over his legs; his clock that tells the outside temps (read my past football blogs!); his bowl of Mike and Ikes; and his water bottle.  It takes him awhile to get settled..............ottoman just right, blanket repeatedly shaken and smoothed and placed just right, the clock put where he can see it and keep track of the ever important outside temps.  And once he's finally settled, he'll remember something that he didn't bring or do, and off comes the perfectly placed blanket as he gets up to accomplish a task............only to return and repeat the whole process again.  I am exhausted by the time he is finally settled.

Then come the questions and the comments.  "Mom, who are the Chiefs playing?"  I tell him they're playing the Green Bay Packers, and then of course he wants assurance that I'm still "voting" for the Chiefs.  He makes his usual observations about the players with long hair, etc. 

"Mom, what's that stuff they squirt in their mouths out of that bottle?"  It's usually water, Aaron.  And he laughs and says, "Oh, I thought it was mouthwash!"  Some of the players may wish that it was.

One of the Packers had a leg injury and was finally driven off the field with his leg all bound in a brace.  Aaron watched that with particular interest.  "Mom, when that guy was hurt, they moved his leg and he acted like he didn't like it."   I'm sure he didn't like it at all, Aaron - it hurt!  

"And then that bulldozer thing came in and picked him up!"  I have images of injured players being scooped up with bulldozers.  Disturbing - and funny!

We finished the Chiefs game and turned the channel to the Broncos and Patriots.  Aaron determined that I was voting for the Broncos and he turned his attention to the symbols on their helmets.  He always wants to know what the symbols stand for and I often find myself unable to fully explain it.  Google, Aaron, google!  As he saw the Broncos helmets, he said, "So why do the Broncos have a dog on their helmets?"  No, Aaron, it's a horse - a Bronco. 

"Oh, and so the Chiefs have a spear."   That would be an arrow.  Remember ARROWhead Stadium that we've seen in Kansas City?  Arrow........spear............who cares, right?

He heard the announcers talking about Tim Tebow and the Tebow effect, etc.  Finally Aaron asked, "So they keep talking about Tebow.  What's that?!"

What's that?  Indeed!  Let me tell you about an awesome football player, Aaron! 

And so the afternoon went until Aaron lost interest, had no more insights or questions, got up and went on his way to occupy himself with his computer.  Funny how quite it is when he's gone. 

Kinda boring, too.  Is that a bulldozer on the field?! 

Friday, December 16, 2011

Siblings and Sleepovers

I've been thinking today about siblings - specifically, Aaron's siblings - Andrea and Andrew.  I guess these thoughts are on my mind because of the family time of year this is, and also because tomorrow Andrew is not only coming home from college for the Christmas break..............but it's also his birthday!  My youngest is turning 22 and for some reason that sounds impossible to me! 

Andrew and Andrea
When a child has special needs, the entire family is impacted in many ways.  The needs of their special brother or sister can be overwhelming to them as well as to the parents.  We've certainly had our ups and downs adjusting to life with Aaron over the years.  We know that God put each of us into this particular family for a reason, and God's reasons are always good.  His sovereignty in our lives gives us peace even when circumstances don't make sense.  However, each of us has had to grow in our reactions to Aaron and in our reactions to God..............because life with Aaron has had its challenges, especially during Aaron's puberty.

Aaron is only 18 months older than Andrea.  His adjustment to her addition to our family was seamless.  He loved her from the first day and they were very close as they grew.  When Andrew was born three years later, Aaron had a more difficult transition.  I believe a big part of his uncertainty was due to the fact that Aaron was five years old and was very used to our family the way it was.  Andrew was a little interloper who intruded into Aaron's time and space.  We knew when Gary brought him and Andrea to the hospital there in Germany to see me and Andrew that Aaron was struggling.  We understand it better now in hindsight.  We were encouraged when I got home with Andrew because Aaron ran to his room, brought me his favorite stuffed bear, and told me that he wanted to give it to Andrew.  How sweet and touching that was!

As the three of them grew and matured, the differences between them was more and more noticeable.  Aaron's seizures took their toll, and the autism made him a misfit socially.  He would take out his frustration by hitting Andrea or Andrew, or yelling at them, etc.  Of course, they resented that behavior.  All of us were struggling to figure out what was going on with Aaron and why he was so different and miserable.  There were times that Andrea and Andrew thought that Gary and I didn't discipline Aaron enough - that we let him get by with things - and they certainly didn't respect that.  Aaron's behaviors in church, restaurants, shopping - wherever we were - were embarrassing to them.  And sometimes family trips were ruined because of Aaron, or were at least altered as we had to manage him.  It wasn't all gloom and doom.............we had plenty of fun..............but the hard times were certainly tiring for all of us.  Siblings of special needs children do struggle, though, and need a higher level of understanding than those in families who don't face these issues. 

Aaron has always been jealous of Andrew.  We believe it's because Andrew is a guy, so there's the competition that Aaron feels on that level. I remember when Andrew got his driver's license, a privilege that Aaron will never have.  We decided to downplay it in front of Aaron so as not to hurt him.  One day Aaron saw Andrew get in the car and drive away.  Aaron looked surprised and said, "So Andrew has his license?  He can drive now?"  When I told him yes, Aaron was silent for a minute and then softly said, "I wish I could drive."  That one little sentence spoke volumes and it broke my heart for Aaron.  He showed how much it mattered to him that he would never be able to drive, and that his little brother could do that now.

When Aaron was younger he thought the ultimate friend experience was to have a sleepover.  He did plenty of that when he was younger but as he got older those experiences were few and far between.  Our dear friends in Arizona, the Eatons, made sure that Aaron got to come over and stay at their house.  All three of their children, two of them boys, gave Aaron so many wonderful and fun times.  Here in Kansas, as Andrew got older and had friends over, it was hard for Aaron to handle.  He'd express his frustration sometimes by being rude or mean to Andrew's friends.  And then there was the day that a good friend of Andrew's - a very sweet girl - came over one afternoon to see Andrew for a few minutes.  Aaron bounded out of his room when this girl came in the front door, stood at the top of the stairs, and loudly asked, "Andrew, is she sleeping over??!!"  Thankfully, she was very understanding and we all laughed and our faces turned red - except for Aaron, who totally didn't get it!

As the three of them began entering their late teenage years and early adulthood, their relationships have changed.  Aaron sees Andrea as more of a mother figure.  He'll ask her permission about doing things and talk to her excitedly when she comes home.  When Andrew comes home from college, Aaron will say, as he did this morning, "Oh no!"  But today when he said that he looked at me and we both started laughing.  He doesn't really mean that anymore.  He'll say that we like to talk to Andrew more than we talk to him and we remind him that we haven't seen Andrew in ages.  Aaron is rather selfish that way.

Last May, when Andrew had come home, Aaron came into the kitchen and tried to hit Andrew on the back.  Andrew swerved and Aaron missed.  Andrew turned to Aaron and laughed and then said, "Hey, Aaron, how about a hug?"  When he started to come Aaron's direction for the hug, Aaron backed up and said, "Uh.....uh......uh....."  HaHa!  That show of love really threw him!  Today I see more love and understanding from Andrea and Andrew toward their brother.  More patience and more warmth in their eyes.  They've grown even when Aaron hasn't.  The irritations are fewer and farther between, though still there at times. 

Gary and I love all our children equally.  We are very proud of the growth that we see in Andrea and Andrew, and know that someday they will be able to look back and realize how having Aaron for their brother has been a blessing and a teacher of many life lessons. 

And the cause of many red faces!

Thursday, December 15, 2011

Eggs (With Shells)

I asked Aaron what he wanted for breakfast and he was deep in thought.  I suggested eggs - boiled eggs, specifically, which he likes the best of all egg forms.  "You mean the eggs with the shells?" he asked. 

Yes, Aaron, the eggs with the shells.  As opposed to the eggs with the yellow (fried) or the eggs that are stirred (scrambled).  He can't seem to remember the technical names of the various egg forms. 

So we agreed to fix boiled eggs.  He got the eggs out of the frig so that when I came down to the kitchen, that part was done.  He was in the family room as I opened the eggs and asked him how many he wanted.  Big mistake on my part.  "How many eggs are there?" he inquired. 

There are five eggs in the carton, Aaron.  And of course he replied, "I want the five!" 

No, Aaron, you don't need FIVE eggs.  "But you asked how many I wanted,"  he countered.  Clever Aaron.  He knew he caught me.  He was laughing. 

There are five eggs boiling but I reminded him that I am hungry, too.  And HE always reminds ME that I need to be careful about how I phrase my questions to him! 

You'd think I would know that by now!

Wednesday, December 14, 2011

Artichokes and Pomegranates

Whenever Aaron goes somewhere with Gary or me, it's an adventure for him.  He's observant - and then he excitedly likes to talk about everything that he observes.  Everything - really.  He'll even mention that someone has orange hair, lots of wrinkles, a big nose, a weird voice - and then say, "I'm not making fun, Mom!  But they did have..............."   He notices what billboards are new or that an office building has been repainted a different color or design.  And talk and talk and talk about his findings.

When he and I went to his doctor appointment last week the experience was just fun discovery after another for Aaron.  The visit to the doctor was just the parentheses for him.  The real purpose of the trip for him was the promise of a visit to Sam's for him to point out some possible Christmas gift ideas among the DVDs there - and lunch, of course. 

When we arrived at the Epilepsy Center, Aaron marched purposefully up the hall to the elevator and pushed the "up" button.  When the door opened, he went right to the back corner of the elevator and with delight said, "Mom!  Stand in the corner and feel how it feels when the elevator goes up!"  And we repeated that scene when we left and the elevator was going down.  I'm not sure how he discovered that the corners felt different, but somehow he did! 

At the check-in desk, there's always a pen for him to try to put in his pocket.  I've learned to watch him and so he rarely gets by with that.  His drawer at home is stuffed with his pocketed pens from all over town!  And in the exam room there is a blood pressure cuff for him to try to finger, or the light that goes in his ears, or plastic gloves to try to put on.  Aaron!  LEAVE EVERYTHING ALONE!!  And he talks and talks some more as the doctor visit takes place in his random Aaron way.

After we left there, Aaron sat on a chair in the hall while I went to the restroom.  I told him to stay right there and not to get up.  He did just that - at least I think he did.  I didn't hear any sirens going off so we were good.  I told him that before Sam's I wanted to stop right down the street from the hospital at a wonderful store here called the Nifty Nut House.  This store has candy and nuts of every variety imaginable!  It was so crowded with holiday shoppers on this day, but Aaron was fairly patient as he waited for us to leave so we could go to Sam's.  And with all the fun candy there, Aaron asked if he could have some Twizzlers or Skittles.  Really, Aaron?  We can get those at Sam's - don't you want something unusual?!  Then he spied the Nutcracker, which he loves, and he let me snap this fun picture of him:

Off to Sam's we went and Aaron was in his element for sure!  Pizza and a cinnamon bread stick made him happy before we headed out to look at DVDs.  That done, we walked over to one of Aaron's very favorite parts of the grocery store - the produce section.  He loves finding unusual veggies or fruits.  I remember how years ago he was very fascinated with artichokes.  I would be looking at something else and hear Aaron yell, "Mom!! What's this?!"  He would nearly run as he brought it to me, so excited at this unusual "thing" that turned out to be an artichoke.  Finally one day we bought one, took it home, and cooked it.  He was thrilled to eat it and to experience this unusual food.  He still talks about our artichoke.

At Sam's it was a pomegranate.  "Mom!!  What's this?!"  

It's a pomegranate, Aaron.

"Oh," he said, "so it's an apple?" 

No, Aaron, it a pomegranate!  So we discussed what little I knew about pomegranates and I told him to research it later. 

He also decided to bang on the watermelons.  No, Aaron, the watermelons are not to be used as drums.

And then it was, "Mom!  What are these?"  Whereupon I turned and saw him holding up a container of blackberries.  When I told him what they were, he said, "Oh, I thought they were wrinkled blueberries!"  Hmmm.........let me look at those again!  I do love his fresh take on things!

So it went.  On the way home, he told me again how on his way home the day before he thought he saw an owl sitting on the telephone wire.  I figured out that it was probably a hawk he saw, so we discussed hawks - why they sit on the wires, what they eat, where they live - and Aaron said, "So do hawks come out at 4:00 or 4:30?"  Ah, so much to think about.

Time with Aaron is always interesting and sometimes a whirlwind as I try to keep up with his thinking, or stop him before he does the thing that I know he'll try, or say the thing that's on his mind no matter who hears him, etc.  At supper that night, Aaron was telling Gary the details of our day. 

"Dad, after we went to the doctor Mom wanted to go to this place called the Nut House!"  HaHa!  Actually, that's not too far from the truth sometimes!

Monday, December 12, 2011

Cemetery Cars

As we dealt with the deaths of three of our parents in 14 months, we also observed how Aaron would process this sad reality.  Never did we see a tear.  The thought of Aaron crying over any one's death, even someone he loves, just doesn't fit the Aaron that we know.  Instead he will seem emotionally flat, unaffected except for perhaps a flicker of surprise that crosses his face. 

However, as always, Aaron is processing this information.  He needs to file it away in his brain and make it a part of his factual world.  He does NOT need to express outward emotion the way that we do.  In fact, our emotion baffles him.  It makes him uneasy and probably feel very insecure.  What does he do with a crying mother?  He is totally unprepared to handle that issue, and so he withdraws from it and doesn't show any concern or offer any comfort. 

Yet Aaron does, in his own way, show that he is sad and that he cares.  He demonstrates this, as usual, by doing what Aaron does best - talking!  At the most random moments he will mention something about Granny or Granddaddy or Grandpa or Mama Rachel, etc.  Perhaps it's to talk about a special memory, or a physical feature of one of them, or a gift they had given him at some point.  The most endearing comment that he makes, though, is when he says, "I miss Granny." -  or one of the other grandparents.  He'll want to know if we miss them, too.  We know that he cares and we must allow him to show it in his own way, not in our way. 

We often pass a large, beautiful cemetery a few miles from our house.  Aaron will talk about the big cross, the flags, the headstones, or why a covering is up as a funeral is being prepared.  The funeral processions that he sees as he's driving around with his group particularly intrigue him.  Just the other day he said, "Mom, today we saw some of those cemetery cars.  Why do we have to stop when they come by?  I don't know that person!!"  There again, factual Aaron doesn't display care or concern over the grieving family.  I'm able to use that as an opportunity to discuss how important and meaningful it is to show respect for any grieving family and for the loved one they lost.  I'm not sure that concept made much sense to Aaron, though.  I know him well and I'm pretty confident that he's pondering why on earth he should show respect to someone he doesn't even know! 

One day we were driving to an appointment.  Aaron often points out things to me that he sees as he rides around with his day group.  On this day as Aaron and I were riding along, he bent over and was peering intently out the front windshield of the van.  I wondered what he saw.  Then suddenly he said, "There!!  Up there, Mom!"   I asked him what was up there and he replied, "See those flowers and that cross?  Someone is buried up there!!"  

Oh my.  I told him that this site was a memorial set up by the family of someone who had been killed there in a car accident.  As we talked I realized that Aaron had seen other memorials such as this and thought that all of them were graves.  He wondered why people were randomly buried all over town!  Flowers and crosses mean graves, right?  I was glad that we cleared that up! 

And ever aware of the way that Aaron connects the dots in his world in the way that makes sense to him. 

Saturday, December 10, 2011

Dealing With Death

Part of Aaron's inability to relate to our world socially has inevitably involved the issue of death.  I'm thinking of that now because it was three years ago today that my dad died after his valiant fight against cancer.  Dad was diagnosed with lung cancer in 2000, and after his treatments we were very hopeful that he was going to be fine.  However, in November of 2004 some routine blood work raised alarms and he soon found out that the cancer had spread to his liver.  I'll never forget that phone call and the ensuing days of sorrow and pain for our family - but also God's amazing presence and peace.  That will be for another story.

My family all decided to rearrange any Christmas plans we had and to all go home to be with Mom and Dad.  We weren't sure if there would be another Christmas, or another year, to see my dad.  Gary and I, and our three children, all drove from Kansas to West Virginia to join my four siblings and their families for this special time.  It really was a sweet time together.  None of us knew that God would give Dad four more years to be with us.  What a gift! 

I'll never forget the early morning that we left Mom and Dad's to drive back to Kansas.  It was such an emotional goodbye for all of us.  We stood in their living room in a circle, holding hands, and prayed.  Except for Aaron.  All this emotion and all the tears as we openly wept was just too much for Aaron.  He was confused and bothered by it - overwhelmed and unsure of how to express himself.  And so he sat in a chair near us, and softly in a monotone voice he was saying, "Cry-babies.  Cry-babies.  Cry-babies.  Cry-babies."   Over and over.  It was actually pretty funny and broke some of the tension for us.  Yet we knew not to laugh openly at Aaron because this was evidence that he was also struggling with all of the burden of possible death.  He just couldn't express himself like we could. 

That scene also showed us that we couldn't bring Aaron with us on our trips home over the next few years, and certainly not have him involved in hospital visits or funerals.  He would be overloaded emotionally, and his actions and comments would be offensive to those who didn't understand.  Little did we know what the next few years would hold.  In 2007, Gary's mother literally overnight went to the hospital and never returned home.  She passed away in October of that year.  The next year, also in October, Gary's dad passed away suddenly.  My dad died two months after that.  During that time we made several trips home to visit and to help, but we always left Aaron in Kansas under the care of friends. 

Two years ago we decided to go back east for a visit with both of our families - and this time to take Aaron with us!  When I told Aaron that we were going to make a trip home, he said, "So who died?"  We had been so consumed with the death of our parents that he assumed someone else must have died!  Aaron was delighted when we told him that no one had died, and that he was going with us on this trip!  He had such a wonderful time getting to see everyone.  We took him with us this year, too, as you know from my blog. 

I have other stories to share in another post about Aaron's handling of this issue of death, but let me share one more now.  My niece, Ruth, was diagnosed with a rare form of cancer at the time my dad was dying.  Dad would pray for Ruth in his soft, weak voice.  His heart broke for his granddaughter that he loved so much.  It's a long story, but God has healed Ruth and even blessed her and Robert with something the doctors told them would never happen - a baby!!  Little Raphael was born this past October.  One night after Ruth found out that she was pregnant, she and I were communicating on the computer while Aaron and I played Skip-Bo.  Ruth and I were both crying as we talked about how happy Granddaddy would be that she was going to have another baby. 

I couldn't hide from Aaron the fact that tears were rolling down my cheeks.  He looked up from his cards and just stared at me - and stared some more.  Then he said, "WHAT?"   He waited a couple seconds and repeated it - "WHAT?"  It really troubled him to see me crying.  So I told him, "Well, Aaron, Ruth and I are talking about Granddaddy and it makes us cry." 

And Aaron said, "Well, why are you crying for Granddaddy?!  He's already DEAD!" 

Oh, Aaron.  To some that may sound heartless, but for Aaron things are pretty well cut and and white.  Dad would have laughed at Aaron's response and seen the sense in it.  And really, doesn't his statement make sense?  Even when I tried to explain that we were crying more for us and how much we miss Granddaddy, our tears should never be for Dad.  He's far happier than we are!  And we know that someday we'll see him again and enjoy all of eternity in heaven together.............where there will be no more Cry-babies!!!!!

Friday, December 9, 2011

The Epilepsy Center

Yesterday Aaron had an appointment at the Epilepsy Center for his regular check-up.  Thankfully, his nocturnal seizures have lessened over the past few months - or we're not hearing them as we sleep during the night.  We have a baby monitor on our nightstand but I'm convinced that we don't always wake up during his seizures.  The Epilepsy Center here in Wichita has been a tremendous blessing to our family, not only to Aaron.  Keith Trevolt, the Nurse Practitioner there, has taken such good care of Aaron over the years - even making a house call one Thanksgiving.  I wrote about that in an earlier blog when telling Aaron's story.  Keith is a dedicated follower of Christ and everything he does is based on his relationship to Him.  We share about the Lord at every visit and it's such a blessing. 

Keith is very patient with Aaron and listens to Aaron as he talks about anything and everything.  Aaron tries to cover as many subjects as possible while he has a captive audience.  Keith and I often have to talk over Aaron.  Aaron sits on the exam table and rubs his hands together in excitement as he tells Keith about his latest movie, or game, or Paradigm experience, or a delicious overeating experience.  Like yesterday when Aaron told Keith, "I was with Paradigm at the east mall and I went to Dairy Queen.  I bought that new Chocolate Blast [or whatever it's called] and after I ate it I had problems."  When Aaron said he had problems after eating something he means............intestinal issues...............medically speaking - diarrhea.................      "Mom, my stomach is making funny noises.  Do you think I'm sick?"  No, Aaron, you ate that triple super duper chocolate mess so now you're paying for it.  And so Aaron shared that with Keith, unembarrassed and factual, rubbing his hands together happily at this new story that he's sure Keith really wants to hear. 

Keith acts as if he has all the time in the world.  Sometimes it's so much fun visiting that I tend to forget the reason that we're there.  Then we get back to talking around and over Aaron about his seizures and the best course of action to take from this point. 

The Epilepsy Center is without an Epileptologist right now and has been for some time.  We pray that one is hired soon and that this awesome facility that has helped so many Epilepsy patients and families can stay open.  What a huge loss it would be to so many if they were forced to close their doors, or change their dynamic in some way from focusing on Epilepsy in its many facets.  The Epilepsy Center is a big reason that living so far from our families is tolerable.  It would be very hard to leave the excellent care they have provided not only to Aaron, but to Gary and I as well.  They have walked with us through the stages when Aaron had many seizures day and night; his hospital stay for 5 days for his video EEG; his VNS surgery; all the adjustments after that surgery and finally having to turn the VNS off; medicine changes and tweaking;..................I could go on and on.  And I'll never forget the time that Keith counseled Gary and I in his office, without Aaron there, about the best path to take for Aaron.  He opened his heart and personal experiences with us, and saw my tears and heard our hearts, and was there for us. 

Epilepsy, as with any chronic illness or condition, is more than a matter of pills and doctor visits.  It's a matter of walking this life-long walk with caring professionals at your side who care and who take the time and who have a heart...............and who pray to the One Who is truly the ultimate Great Physician.

Wednesday, December 7, 2011

Slipper Socks

When the weather gets cold, Aaron likes to get out his slipper socks and start wearing them.  They become a permanent part of his pajama-wear during the winter. 

Yesterday evening I was on the computer and heard Aaron come thumping loudly down the stairs.  He plopped down in the chair beside my computer desk and started talking.  I turned my chair to look at him and this is what I saw on his feet:

"Uh, Aaron, one of your slipper socks isn't on right."  He looked down at his feet and said, "What's wrong with it?"  I told him that his slipper sock needed to be turned around and so he started turning the one around that was on his foot correctly.  HaHa!  He thought the cute designs should be on the top of his foot! 

So I told him that the little non-sliding thingies go on the bottom of your foot.  And he was surprised at that.   We discussed what the little puffy designs are really for and why that slipper sock needed to be turned around.  He turned the sock the right way and thumped happily back up the stairs.

Funny how many things we take for granted that he should know.  Maybe I've never paid attention to how he wears his slipper socks in the past - but I will now! 

Tuesday, December 6, 2011

Stripped Cheese

If Aaron is given a choice of something to buy at the deli, either at Dillons or Wal-Mart, he'll choose a Cheddar Pasta Salad 99.99% of the time.  And 99.99999% of the time he'll order a large Cheddar Pasta Salad.  When it comes to eating, Aaron is definitely a "larger is far better" kind of guy. 

Anyway, today he came home from his group and said, "Mom, I got a Cheddar Pasta Salad at Wal-Mart for lunch.  I got a large [shock!] and I'm stuffed!" 

I was glad that he was able to get the Cheddar Pasta Salad today.  It was last Tuesday that the deli was out of his favorite salad, and he bought those 36 rolls.  A large Cheddar Pasta Salad is better - believe me!

After telling me that he bought his Cheddar Pasta Salad [large -shock!], he proceeded to discuss each ingredient with me - from the "twirled pasta" to the dressing.  "Mom, it has those purple onions."  Yes, Aaron, and for some reason they're called red onions.  Being color blind, this doesn't overly concern him.  Good. 

"And it has broccoli - it's very crunchy!"  Yes, and good for you, too.

"It has that dressing that you don't like too much.  Is it mustard?"   Oh, good grief!  AGAIN??!!   Can he not ever tell the difference between mustard and mayonnaise?  "No, Aaron - it's mayonnaise.  Remember, mayonnaise is white."   "Oh, yeah!!!  Mustard is yellow!"   For the time being, yes.  Until we talk about it again.

He continued, "And Mom, it has that yellow stripped cheese."   Well, that's a new one.  It took me a minute.   "Aaron, stripped cheese?"   

"Yeah!  You know, it's in pieces." 

Aha!  Of course!  The grated cheese IS in pieces that are strips.  I pulled out a bag of my grated cheese and we talked about it, and about the cheese being grated. 

I don't know, though.  I really love Aaron's descriptive words.  Sometimes I wonder if I ruin a good thing by "educating" him. 

Stripped cheese it is! 

Saturday, December 3, 2011


Aaron loves to eat Goldfish crackers.  The other night we were watching football and he went into the kitchen to get a snack.  Soon he came back into the family room with his blue bowl heaped full of Goldfish.  He was also carrying an empty bowl.  He got settled again in the big chair that he loves, stretched his legs out on the ottoman, covered his legs with his fuzzy blanket (nursing home style), and proceeded to get his bowls situated just right on his lap.  Things must be done correctly before the serious business of eating takes place!

I felt like I knew what the second, empty bowl was for but decided to ask anyway to see what he would say.  "Aaron, you have two bowls.  What's the empty bowl for?"    And he replied, succinctly, "Crumbs."  Now I know that Aaron does get a second bowl when he eats things like tortilla chips or cookies - food that is larger and may be crumbly.  He'll lean over the empty bowl when he takes a bite and then give the chip or cookie a shake in order to get rid of the crumbs.  Crumbs must never go into the same bowl as the uneaten chips or cookies.  But Goldfish are very small and you don't bite into them, creating crumbs. 

I watched Aaron out of the corner of my eye as he ate the Goldfish.  Every now and then he would toss a Goldfish into the empty bowl.  He would toss it rather quickly, like it was almost hot or uncomfortable for him to hold.  And I knew what he was doing.  Here's a picture that I took later, after he had gone to bed.

The Goldfish that Aaron won't eat and must dispose of are those that are defective.  They have part of the cracker area missing, or have a hole in them, etc.  He will NOT eat those Goldfish.  I've noticed this in the past.  He's pretty secretive about it, as if he knows this behavior is strange and so he doesn't want to talk about it.  In fact, as he tossed the unwanted Goldfish into the empty bowl that night he would glance at me to see if I was looking.   The workings of Aaron's mind continue to fascinate us, no matter how long we live with him. 

Deep thoughts also cross my mind, such as:    Why on earth will Aaron sometimes eat a paper towel (no joke!) but won't eat a defective Goldfish cracker?  I'll probably never figure that one out! 

Thursday, December 1, 2011


As you've seen in some of my other posts, Aaron has certain things that he does the same way every time he engages in that activity.  The way he makes his bed - remember The Order of the Covers post.  The way he cuts coupons; the way he says goodnight; the way he wears his watch; the lists he keeps - on and on.  The insistence on sameness that Asperger's individuals exhibit is certainly a part of his life. 

This fact is definitely seen whenever Aaron eats.  It doesn't matter what the menu is for Aaron - he will ALWAYS make sure that he has a spoon, a fork, and a knife.  Sometimes two spoons, for some reason.  I don't care if he's having soup - he will get up from the table, open the silverware drawer, and get a knife and a fork before he will eat the soup - with a spoon, of course. 

One day I fixed him one of his favorites - a quesadilla, which is finger food!   And notice the silverware:

Just this week he ate the last piece of Apple Pie for breakfast, as well as celery with peanut butter.  Weird, I know, but he was happy.  I gave him his pie with a fork on the plate.  Sure enough, when I went back into the kitchen he was up out of his chair, walked to the drawer, and got his knife and spoon.

He didn't use them but he wants them there just the same.  We tell him that he doesn't need them but it makes no difference - he will have them there by his plate.  Some things are not worth fighting.

But I sure am glad to have a dishwasher for all that silverware!