Author: Patty hesaidwhatks

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 dried………black 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!!!!!
 

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.

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! 

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! 
  

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! 

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!

This morning I had the usual rush getting out the door to take Aaron to meet his group.  I didn’t return home until nearly 1:00.  As I was cleaning the kitchen, I opened the door where our trash can is to throw something away, and there it was.  The box that held the 18 rolls.  The EMPTY box that once held the 18 rolls. 

Of course Aaron ate the remaining rolls this morning.  What did I expect?  I wondered how many there were.

Later this evening, Aaron came into the family room and said, “Mom!  This morning I ate the rolls for breakfast.”   I told him that yes, I had noticed that, and then I asked, “So how many rolls did you eat?”

And he answered, “The rest of them!!”

I had to laugh.  Aaron, I KNOW you ate the rest of them!  But just how many was that?!

“Oh, there were four,” he matter-of-factly replied.  “They were good, too, and now all the rolls are gone.” 

But he knows now how to remedy that situation with the next trip to Wal-Mart!

Aaron loves rolls – yeast rolls in particular – but nearly any kind of bread is a huge hit with him.  If we have rolls for a meal, we usually end up hiding them after we eat.  If we don’t, then Aaron will sneak into the kitchen to take the rolls a few at a time until they are all gone – usually by bedtime.  It’s so frustrating to go into the kitchen, ready to pop a roll into the microwave, only to find the empty plastic storage bag on the counter.  Aaron!!!

This morning Aaron asked if he could have some extra money since his group was going shopping, probably to Wal-Mart.  So instead of his usual 5 dollars, I gave him 7 – and some change.  But I warned him, “Aaron, do NOT go and buy a bunch of candy with that money.  You don’t need a huge bag of Skittles or several boxes of Mike and Ikes.”  Then I urged him to buy something good for lunch.  I said, “You know, Aaron, you could go to the deli and buy some real food for lunch.”  He agreed – but with Aaron I never know.

He bounded in the house this evening, holding a Wal-Mart bag that had something like a box in it.  He was very excited.  “Mom!!  You know what you said about not buying candy?  Well, I didn’t.  Instead, I bought this!!”  And out of the bag he pulled – this:

A box of rolls.  He was very pleased with himself.  Instead of buying 3 pounds of Skittles, he bought 18 rolls.  Well…………..I guess that’s O.K.   I was wondering what he had eaten for lunch since these were unopened.  He was a little evasive.  So I asked him how much the rolls cost and he told me they cost “3 dollars and something.” 

“Well, Aaron, you must have some money left,” I said.  “No,” he replied, “I don’t.”   Then I asked him what else he had bought and he pointed to the box of 18 rolls and said, “Another one of those!” 

Oh my goodness!!  THIRTY-SIX ROLLS!!!!!!!!!  But he assured me that he had shared the other box of rolls with friends and staff at his group.  He felt that he had been very wise today.  He didn’t buy candy; he didn’t buy slurpees; he didn’t buy chips.  He just bought 36 rolls. 

We ate some of the rolls for supper tonight.  He kept an eagle eye on the plate that held the rolls and made sure that he grabbed the last one that was left.  Later, as we cleaned the kitchen, we noticed that the container of rolls was missing some.  He sure can snatch and run very quickly. 

I’ve told him about other choices in the deli – a sandwich, some fruit, a salad – but leave it to Aaron to spy those rolls and forget anything that I said.  Ah, what freedom!  To have 36 rolls all his own – to eat, to share – but not to have them hidden from him.  He said the woman at the register asked him if he was having a party, and he told her no.  But to him it was a party – with 36 rolls! 

We never know what a day will hold with Aaron!

In my post yesterday, I talked about two of Aaron’s repetitive behaviors – rubbing his hands together, as well as the loud clapping.  He has other charming behaviors, as well.  One that he shares quite often is making noises with his mouth. 

Some of the noises may leave people a little puzzled when they hear them but they are not offensive.  One of those would be when he meows like a kitten.  It may be a little odd if you’re standing somewhere and hear a grown man meow, but it’s not terribly uncomfortable. 

However, Aaron’s very favorite noise is quite the opposite of the meow sound.  His noise of choice sounds like……………..well………………..my dad would have wanted me to say that it sounds like Aaron is ‘passing gas.’     Or that whoever might be standing beside him………….which is usually ME………..is passing gas. 

I become very embarrassed when Aaron makes this noise, as you can imagine.  Whether we’re walking past the Wal-Mart greeter;  walking down a store aisle;  waiting in the check-out line;   sitting in a waiting room;  eating in a restaurant;   in the theater  –  it never gets any easier for me when Aaron decides to blurt out this pleasing noise. 

“AARON!!!,”  I hiss. “Stop making that noise!!!!”    And he almost always asks, “Why?”   WHY??!!  “Because people will think that one of us is…….farting…….(sorry, Dad)……..and that’s embarrassing!”  

But Aaron doesn’t respond to social situations like you and I do.  His filters, the few that he has, are way off base.  Aaron receives some sort of satisfaction from making this noise, just like the clapping, but he is not embarrassed by it.  Not at all.  Ever. 

He came home from his group one day and told me, “Mom, I was standing in the line at Wal-Mart and I made the meow noise.  Then this lady looked at me funny.”  

Well, yes, Aaron I’ve told you many times that no one else makes these noises and that when you do, people think it’s strange, and so they will stare at you – which is why you need to stop making the noises……………on and on and on.

His reply:  “But Mom, isn’t the meow noise better for me to make than the farting noise?” 

Well, when you put it that way…………….

Individuals with autism often exhibit repetitive actions that may be very unusual to the average person.  Sometimes these behaviors are calming to the one with autism, or they may result from stimulation.

Sometimes these behaviors are NOT calming to the individuals who live with these autistic persons.

Sometimes these behaviors cause the people living with the autistic individual to become stimulated and begin their own repetitive behaviors. 

Let me explain.  Aaron, when he is telling about something that excites him, will bend over at his waist a little and rub his hands together.  This behavior is a little funny and is not annoying.  Aaron also loves to clap.  These claps can be ear splitting.  I am sure that he must have the loudest claps of anyone ever living on planet Earth.  This behavior is not funny and is beyond annoying.  Aaron has clapped since he was very little.  His very little claps were cute and we assumed were just the behavior of a very little toddler person.   He never outgrew the clapping, and now his large claps are not cute as they come from this large grown man. 

As we walk into a store I will automatically remind Aaron not to clap.  He can usually stop himself from clapping during these times when he is out in public, but sometimes I may be in another part of the store and I will hear the familiar CLAP.  I roll my eyes and imagine what everyone around him must be thinking. 

So the repetitive behaviors that WE have developed as we live with Aaron are to repeat over and over:  “Aaron, do not clap in the store.”    “Aaron, do not clap while we’re eating.”   “Aaron, do not clap during the movie.”    “Aaron, do not clap during the ball game.”     “Aaron, DO NOT CLAP WHEN YOU’RE SITTING RIGHT BESIDE ME.”   Notice our stimulation in the last phrase.   

We had our small group Bible study over last night.  Aaron was upstairs in his room, playing a game on his computer.  He claps a lot when he plays a game.  We’re very used to it and hardly notice.  Gary was teaching and every little bit we’d hear the familiar clap.  “And so we see in these verses………..CLAP………….that Jesus was reminding us to………….CLAP…………..remember that in this life…………..CLAP…………..we are to strive to be peacemakers…………..CLAP.”   And so it went.

Later, after everyone had left, one friend remained behind and visited with us awhile.  We were talking and there it was………..CLAP……….and our friend paused and asked, “What is that?”  And we told her that was just Aaron, clapping, like only Aaron claps.  Our friend understands Aaron and accepted the explanation as being a very natural thing.  And for us and for Aaron, it is.

Several years ago Aaron broke his wrist.  He had to have surgery to have pins inserted, so he had the cast on for weeks.  We were sorry about the pain and the discomfort for him – but I have to say, the quietness was a gift!  Even Aaron laughed when we talked about how now he couldn’t clap.  I would never want Aaron to break his wrist again, but I must admit that on some days the thought of a cast sure is appealing. 

Do I hear a round of applause?