Has Aaron Called You a Jerk Yet?

Aaron’s been home from his hospital stay for a week now.  He’s doing well, regaining his strength and overcoming side effects of some of the strong meds that he was on.  This was Aaron’s first major hospitalization for a serious illness, and we certainly pray that it’s his last.  It was interesting to watch him in that setting, and sometimes sad, sometimes funny, and often frustrating.  Gary and I were so thankful for the very patient and understanding nurses, aids, and doctors who cared for Aaron, for caring for special Aaron at times takes special calmness…..and some thick skin as well.

We were actually amazed that Aaron handled hospital life as well as he did.  He was totally out of his element, out of his routine, and out of anything remotely familiar.  He didn’t have his bed, his blankets, his clock, his animals, and so many other things that make Aaron’s life his life.  For the first several days, Aaron spent more time sleeping than anything.  But he still had to answer questions, some of which he thought were particularly dumb.  He really didn’t like questions pertaining to his bowel habits, and sighed and mumbled a definite, “HUMPFFF!” It took him awhile to understand the annoying catheter, and let’s just say that bathroom trips for the other were very dramatic.

“Are you going to flush?” Aaron would ask immediately.  Because this is what he does at home, and these nurses were taking too long, he thought.

“Yes, we’ll get that in a minute, Aaron,” they would answer as they tried to balance very weak Aaron and keep him from falling.

“When are you flushing?” he would quickly ask again.

“We’ll do it in a second,” they replied again.

“But you need to flush!” Aaron repeated.

“We know, Aaron.  We will,” they responded.

“When are you flushing?” he asked again.

And I just sat out in the room smiling, because I know Aaron and I know that this flushing business is supposed to be done a certain way by him.  He was realizing that he couldn’t count on the nurses to do it correctly at all.  No big deal to you and me, but huge to Aaron.

He wanted some normalcy, so on the day that he was admitted and I was going home in the evening, I stood over his bed and told him that Dad was staying while I ran home.  “Mom, can you bring me my watch and my glasses?”  Of course he wanted those things.  When I returned with them, he immediately put his watch on his arm, pushed up high the way he likes it, and there it stayed for the remainder of his time there. 

He had been wanting the movie “Tremors” that he had seen in Wal-Mart.  In the midst of his fever, coughing, and pain, he asked if he could have that movie.  On Sunday I ran up to Wal-Mart nearby and got it for him along with some head phones, for Aaron MUST listen to movies with head phones.  He tried watching it right away that day, but he mostly slept through it.

 

On Sunday morning, his coupon cutting day, he remembered.  “Mom?  I just want to go home and cut coupons.”  I felt so sorry for him!  But I assured him that I would save the coupons for him. 

In his sleep one time, he said, “This is not fun.”  Again my heart hurt as I looked at him with needles and tubes and gadgets all around him, burning up with fever and coughing, trying to swallow pills when needed.  Then later that same night, he unexpectedly said, “I love you, Mom.”  For Aaron those words don’t come often or easily, so with surprise and with hidden tears I stood at his bed and welcomed his hug.  He was scared and he was so sick.  I was scared, too, but I couldn’t let him know that. 

You can barely see his watch on his arm.  :)

 

Several times that week he looked at the clock sometime after 7:00 at night, and told us that he missed Wheel of Fortune.  It bothered him to miss his show, but he was so often sleeping soundly during that time, and Gary, who was with him then, wouldn’t awaken him for that.  I wouldn’t either, so we again assured Aaron that he could watch Wheel of Fortune when he got home.  His routine was totally a mess!

His bluntness was often embarrassing to us.  I was so very relieved that the staff understood the autism, and that they made sure to brief all the staff that came on during the shift changes.  I went down with Aaron to get another chest X-ray one morning.  The technician said, “Well hello, Aaron!  Do you remember me?  I took your X-ray yesterday.”  Aaron immediately replied, “Who cares?”  I heard it out in the hall and Aaron heard me calling his name to correct him, but the nurse standing there with me laughed. 

All the nurses and others assured me that they understood Aaron, and they truly seemed to do just that.  Yet still I would find myself apologizing and explaining, even as they told me that it was fine.  They genuinely seemed to like Aaron, even when he would call them a jerk.  Yes, he called some of them a jerk, especially when he was feeling terrible and didn’t want them messing with him.  Once I went out to the nurse’s station, and they were laughing, asking each other if they had been called a jerk yet by Aaron.  Proud Mom moment.  At least they thought it was funny.  Andrea told me that Aaron just said what lots of other patients wish they could say when they felt bad. 

There were so many moments with Aaron.  One night, late, he just wanted to go to sleep but had to take his meds and have his vitals taken, a new IV started, and so forth.  He was so tired, and when the nurse was finished he said, “You can go out of my room now.”  And one day when the sweet nurse’s aid walked in, I said, “Aaron, there’s your buddy.”  He looked at her and said, “You’re not my buddy.”  Very matter of fact, not hatefully, but he made his point. 

 

Physical therapy was interesting.  Aaron didn’t want to answer all their questions on their first visit…..questions about our house so they would know what he faced when he went home.  He sighed a lot and rolled his eyes a lot, and I fussed at him a lot.  One day he was in bed when they came to walk him up the hall, so out of bed he came and up the hall he walked.  We knew that Aaron needed to sit in the chair when he returned to his room, but he walked over to his bed, looked down at it, and told us, “I said I want here.”  Nope, Aaron.  You’re not getting your way, even if you call us jerks.

When his fever finally broke on Wednesday night, and he felt much better all day on Thursday, he was even more vocal about how frustrated he was.  Feeling better made him miss home more, and missing home more made him more vocal.  He never totally lost control, but he was more unhappy and bossy, that’s for sure.  I told the doctor on Friday morning, before she came in the room, to be sure that she had put her thick skin on.  But when she came to see Aaron, her face was all smiles.  His chest X-ray that morning was better, and she said he could go home!  YAY!!  Aaron smiled a huge smile, and was the happiest I had seen him all week. 

One of the last things he had to do was let Occupational Therapy come and give him a shower.  He was willing to do that.  In fact, he had enjoyed showers the past two days.  He did think sitting on the chair was pretty weird.  The occupational therapist was there to observe Aaron and to show him some ways that he could shower more safely.  I listened as I packed up our belongings out in the room.

“Aaron, first you need to wash your hair,” she said.

“No,” Aaron replied.  “I do it this way.”

And as he did it his way, she tried to instruct him.  But Aaron told her that he did it THIS way.  She finally told him to at least wash the top of his head, too.  My former suspicions about his showering were confirmed. 

This scenario continued as I listened and quietly laughed. 

“Aaron, now you can do this,” she would say.

“But I like doing it this way,” he would reply.

“OK, let’s do this,” she said.

“No, I do it like this,” Aaron stubbornly replied.

On and on it went, with the OT giving Aaron suggestions while Aaron would have none of it.  Nope, he was not about to change how he showered or how he dressed afterward.  I realized after several minutes that this nice lady wasn’t instructing Aaron on how to shower.  He was telling her and showing her how he showered.  She was basically helping him shower, his way.  I was thankful that she helped Aaron shower, and I was hoping that maybe something she said stuck with Aaron, but I seriously doubted it.  Aaron’s routine isn’t changed so easily, even if you are an OT.

We left the hospital with hugs from our wonderful nurse that morning and a big smile from the aid, the one who was Aaron’s buddy whether he agreed or not.  I’m sure Aaron left his mark on everyone.  I have the utmost respect for the hospital professionals who worked so well with Aaron, even when he was grumpy and at times rude. 

And was Aaron ever glad to get home!  That story will be for another time. 

Aaron's Hospital Stay

Aaron came home from his day group on Thursday, June 11, in his usual way, bounding in the hall door from the garage with talk of what he had done that day at Paradigm.  It was later, as I stood in the kitchen fixing supper and he sat in his family room chair, that I noticed him coughing.  It was just a dry cough, nothing major, but it was persistent.  So I leaned around the corner and asked him if he was all right, and he answered in his usual droll way that he was just fine.  But as we ate supper awhile later, Gary and I noticed that he was very slow.  A couple days earlier, on Tuesday, Aaron had four seizures.  That wasn’t unusual for him, but on Wednesday he was himself again.  To be more lethargic on Thursday was concerning to us. 

During Wheel of Fortune he wasn’t animated or excited at all.  I felt his forehead and noticed how warm he was.  Sure enough, when I took his temperature it was 102.4.  The next morning I called McConnell Air Force Base to make a same day appointment.  Aaron kept sleeping until I finally went in his room and roused him enough to take his temperature again.  It was still 102.4.  He had a very hard time waking up enough to take his morning pills, and then went right back to bed.  As I continued to check on him I became very concerned at how he couldn’t wake up, so I finally made the decision to take him to the ER.  McConnell agreed with me, so I worked to get Aaron awake enough to dress.  I then had him sit on the floor of the hallway upstairs and scoot down the stairs on his bottom.  He would scoot down one stair and fall asleep until I jostled him……then scoot down another stair and fall asleep…..all the way down the stairs. 

We slowly made it to the van, and later at the ER a male nurse helped Aaron out of the van and into a wheel chair.  Still he slept.  We got him on the exam table and he slept again.  Somehow he stood up for a chest X-ray, but he slept through the doctor’s exam, the blood draw, insertion of the IV, and even the catheter.  The doctor found an ear infection, so I thought that Aaron’s body was just fighting hard and the sleeping was his reaction to that.  I felt like we would soon leave with an antibiotic prescription, go home, and get Aaron well. 

 

 

Yet the concern on the doctor’s face as he kept coming in the exam room was raising my own concern as well.  Finally he told me that the blood work had shown Aaron’s sodium to be dangerously low.  It should be at 135-136, but Aaron’s was 121.  Then he said that Aaron would need to be admitted to the hospital to address the sodium issue, and to find out what else was going on with him.  My mind was whirling as I called Gary and as we tried to decide if Aaron would stay at St. Teresa Hospital or go elsewhere, although that decision was made for us by insurance.  We would stay at St. Teresa.  It wasn’t long before we were on an elevator headed up to the small ICU unit, my mind still trying to adjust to all this.  I looked down at my very sick son and wondered about the “what else” that the ER doctor had mentioned.  What else was going on inside his body? 

 

There Aaron lay, all hooked up to monitors and tubes, his body struggling against that unknown something that was making him so sick.  He tried hard to wake up enough to answer nurse’s and doctor’s questions.  He sometimes showed his definite personality, like when the nurse asked him a question about his bowel habits.  He gave her a rather disgusted look and just answered with a “Hhmmpf!”  When Gary was there, and I left later that evening to run home, Aaron asked me to bring him his watch and his glasses.  He didn’t wear his glasses a lot during those first few days, but he put his watch on his arm right away, pushed way up the way he likes it.  It was a piece of normalcy in this crazy place in which he found himself. 

 

Over the weekend, when friends came to visit, Aaron would cry.  He showed emotion that was rare for him.  He told me later that he was sad.  I told him that we understood, but I didn’t tell him about my own sadness.  Or about those icy fingers of fear that were trying to grab at me.  It was not only sadness but fear I was feeling as I watched the blood draws…..the strong antibiotics flowing through the IV into Aaron’s body…..the fevers that sometimes rose to 104.5……the CAT scan…..the X-rays…..the spinal tap……the kidney specialist and the infectious disease doctor…..the testing for West Nile and tick borne disease…..the low sodium issue. 

 

Early on Saturday morning, as I have done many times in the past during stressful times, I asked God to give me a special verse.  I asked Him to speak to me in the way that I needed at this time.  There in that hospital room, with Aaron sleeping nearby, God gave me Ecclesiastes 11:5:  “As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything.”  That was it!  I didn’t know what was going on here with Aaron.  I didn’t know the work of God but I do know God.  I know that He loves us and I know that He has a work that He is accomplishing.  I know that I can TRUST Him, regardless of what else I don’t know. 

It was very hard to watch Aaron suffer.  Hard to see the pain in his face when he coughed….the struggle to deeply breathe and to talk…...the pain of needles and tests.  It was easy for me to let fear take over as I helplessly watched our Aaron and wondered still about the “what else” that was so elusive to find in his body.  Soon another principle from scripture came to my heart.  “In everything, give thanks.”  I went home one evening while Gary sat with Aaron, and I knelt by Aaron’s empty bed in his bedroom.  His stuffed snake and skunk were still in the bed where he had left them.  I stretched my arms over his animal print blanket and I asked God to please heal our son.  I told God that I didn’t know about this work that He was doing, but I did trust Him.  And I thanked Him for this time.  That kind of thankfulness takes great trust in the One whom I was thanking, for sure, because I hurt for Aaron so deeply.  But I also know God and I know that He can be trusted.

It was a turning point for me.  My mother heart still hurt deeply all through that week in the hospital.  One night, with eyes closed, Aaron said, “This is not fun.”  There went my tears.  And later, eyes still closed, he said, “I love you, Mom.”  I leaned over his bed and he got as big a hug as I could give him.  But I purposely stood there and voiced thankfulness to God, hard as it was, for this work that He was doing and that I didn’t understand. 

 

Aaron’s chest X-ray finally showed pneumonia in his right lung.  It was determined that he had Aspiration Pneumonia.  Apparently, he aspirated some saliva during his seizures that previous week.  He responded to a new antibiotic, was moved out of ICU to a private room, began walking with the help of physical therapy, and was soon clamoring to come home.  I don’t know who had the bigger smile, Aaron or his doctor, when he was finally told that he could go home.  On Friday, a week after being admitted to the hospital, he was wheeled out to our van and we took off for home…..after picking up his choice of McDonalds for lunch on the way.  He is recovering his strength and his spirit, and some grouchiness, too. 

There is more to write about this experience.  About how Aaron’s autism affected his hospital stay, and about his tender return home to his world and his routine.

We’re so thankful for this outcome, but if it had been different, I pray that we would still be thankful.  Thankful for the work of God who makes everything, even when don’t know or understand His work.  When it’s all said and done, there is no better place to be than in His will as we watch His work and trust in Him. 

 

Only If It's Friday!

I just have to quickly share with you a perfect autism moment with Aaron that I had yesterday.  One of the characteristics of autism that Aaron sometimes displays is that he doesn’t always understand jokes or irony.  We had the funniest display of this yesterday that I’ve seen in a long time. 

He stayed home yesterday because we had an appointment with his state insurance representative.  I decided to make a quick trip to Dillon’s, and of course Aaron went with me.  I told him that he could have his favorite Cheddar Pasta Salad for lunch, so he was very happy as we walked into the store.  Aaron always gets a large container, by the way.  That’s important to remember.  Oh, and it’s also important to remember that yesterday was Friday.

We waited for awhile at the deli counter before an employee walked up behind us on her way to help us.  Aaron was a tad impatient at having to wait, and was just ready to order his large salad.  As the lady asked what we wanted, Aaron ordered in his usual way.

“Can I have a large Cheddar Pasta Salad?” he asked. 

“Only if it’s FRIDAY!” she answered Aaron, with a big smile as she enjoyed her little joke.

And Aaron just stared at her.  He didn’t smile.  He didn’t laugh.  He only stared at her as if she had three eyes.

I knew exactly what he was thinking.  He was thinking that this woman was dumb.  Of course it’s Friday, he thought.  What is she talking about and why is she smiling at what she said?  It’s just dumb.

Then Aaron gave a little grunt because he suddenly realized that something was expected of him, but he didn’t know exactly what that was.  So he gave a small grunt of acknowledgement as I chuckled and said something about how funny that nice lady was.  What I really wanted to do was bend over and begin a loud belly laugh, but I knew that would only frustrate Aaron further, so I resisted.  And the look on the poor woman’s face was pretty priceless, although I felt a little sorry for her. 

Then it got even better.  There were no large containers on this Friday, so the lady said that she would fill two medium containers.  Oh boy.

“But I want a large,” Aaron told her.

I then told Aaron that two of the medium containers equaled one of the large containers. 

The nice lady began to fill a medium container.

“But I want a large,” Aaron repeated.

“Well, we don’t have a large but I’ll fill two mediums,” the lady repeated.

Aaron watched her closely as she filled the first medium container.

“I wanted a large,” Aaron said.

“Aaron,” I said, “two mediums are the same as one large.”  I then pointed to the sample containers on display to prove my point.

“I can’t have a large?” Aaron asked.

Sigh.

“Look, Aaron,” I said.  “You’re getting the same amount in the two mediums as you would get in a large.  Maybe even more!”

He was quiet as the worker finished filling the second medium container.  She handed them to us and wished us a happy day, saying nothing that time about it being Friday.  Smart woman.

I put the two medium containers in our cart. 

“So she didn’t have a large?” Aaron asked.

Sigh.

We walked off as I expounded on the wonderful qualities of getting two medium containers.

“But they didn’t have a large container?” Aaron asked.

I quit counting how many times during that short shopping trip that Aaron repeated, “She didn’t have a large container?”

Up one aisle and down another, Aaron was trying to process having to eat out of two medium containers instead of one large.  Not even getting a bag of Starburst jelly beans deterred him from talking about the absence of his usual large container. 

In this one little excursion to Dillon’s, I saw the complexities and the rigidity of autism in two distinct ways.  It doesn’t matter how long I live with Aaron, it’s always amazing to see how his mind works.  Plus it’s often downright hilarious.

And not “Only if it’s FRIDAY!”  HaHaHa!

It’s every day with Aaron!

 

Some Special Heroes

Hero:  One endowed with great strength or ability; one that shows great courage. 

Don’t quit reading.  I promise I’m not going to launch off into my opinion of Hollywood’s latest hero worship fiasco.  Besides, those of you who know me know what I think about it….and I certainly don’t need to add my voice to the many voices who have so adequately expressed my views. 

I was going to write this blog anyway, someday, but now I have many reasons to do so.  And yes, a big reason is the messed up qualities that our culture is trying to cram down our throats…..not only the person this week but the people every day and every week that they try to convince us are worthy to be called heroes. 

Another reason I want to write about some heroes I know is because of a conversation I had this morning with Barb, a manager at Paradigm and one of the kindest people I have ever known.  She told me of a business owner across the street from Paradigm, Aaron’s day group.  This man is not a nice neighbor to Paradigm.  One day, as special needs clients were outside on Paradigm property, he told the Paradigm staff that they could “take their circus somewhere else.” 

Someone hold me back!  A circus?!  Excuse me?? 

That poor man.  He has no idea that he has heroes across the street from him every weekday.  I looked around inside Paradigm today and I saw amazing young adults.  Shauna gave me a huge smile from her wheelchair.  Jessica waved at me and gave me a beautiful smile.  Paul gave me a hug. 

For years I have been surrounded by heroes…..by individuals who have extreme challenges, but display extreme strength as well.  How often do we “normal” people stop to think about what these special people face every day of their lives?

Each of them has a diagnosis, but their diagnosis does not define who they really are.  There is Epilepsy, Doose Syndrome, Autism, Prader Willi Syndrome, Spina Bifida, Muscular Dystropy, blood disorders, Downs Syndrome, Developmentally Delayed…..

But my friends are real people with real lives.  They were named by their parents, who love them so deeply. 

Jennifer

 

Darien



Johannes

 

 

 

 

Elijah

Christoph

 

 

 

 

 

 

 

 

Alyssa

Aaron

 

Nicholas

Bethany

 

 

 

 

 

Rosa

Kaleb

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

They each face, or have faced, more physical challenges than I have ever seen in my own life.  Could I ever deal with even a fraction of what they handle, sometimes every day?

Seizures.

Taking medicines every day.

Facing the side effects of all the meds they take, which include being sleepy, dizzy, gaining weight, mood swings, organ damage, bone loss, etc.

Surgeries, some extreme.

 

Multiple doctor appointments.

Test, tests, and more tests.

 

 

 

 

 

 

 

 

 

 

 

 

Fear of infection.

This is just a very partial list of what they routinely encounter.  They pick themselves up, every day, and they live.  They live their lives to the fullest.  Would I be able to function after having one seizure, or would I just go to bed for the rest of the day?  How do some of them do it after having multiple seizures, sometimes daily multiple seizures? 

But there is much more than just the physical part of their struggles.  What would it be like to face the social aspects of living life every day with a disability or a diagnosis that hindered you from living like your peers?

Having to go to special classes at school.

Having an IEP.

Not going to college.

Wanting to drive but not being able to get your license.

Having seizures in public.

Looking different, possibly.

Being bullied or teased.

Not having filters, so you say things that others don’t like or understand.

Not having close friends, or any friends at all. 

Not being invited to go out with your peers.

But our kids keep on going.  Somehow they manage to not only live, but to laugh and to grow and to thrive the best they can.  They jump over the challenges and push ahead, every single day.

I’ve watched Aaron on a seizure day as he still tries to smile, to get out of bed or off the couch, and to continue his day as best he can.  I’ve seen him go back to hard situations, like after he’s had a meltdown, and face his staff and friends again.  I’ve heard him say that he wished he could drive as he watched Andrew pull his truck into the driveway.  It’s sad to understand that he can’t even go out on his own to get a hamburger without depending on someone to take him.  I’ve been deeply touched as he watched his brother and sister grow and move on with life.  It broke my heart when he came home from his special needs school one day and said, “Mom, I noticed that all those kids there have problems.  What are my problems?”

And I want to say, “Aaron, you don’t have problems.  You have challenges, yes, but you have overcome them every day of your life in ways I’m not sure I could.  You are strong, and you are tough, and you are brave!”

You’re a HERO!! 

And so are each of these wonderful young people that I’ve mentioned today.  They are each full of courage and strength to live their days as fully as they can.  They wouldn’t think of themselves as heroes, but I do! 

 

And they don’t belong to a circus!!

They belong to a unique group of Super Heroes!  They should be on magazine covers and cereal boxes and talked about on the news!!

But they probably won’t be.  So look around you every day and find the true heroes among you.  Smile at them, love them, encourage their families, reach out to them when you can, and pray for them. 

 

I am very thankful to know so many heroes….TRUE heroes that fit that definition perfectly. 

 

 

 

 

 

 

 

 

 

 

 

 

 

And someday I’ll see two other heroes that have already gone to heaven.

Ben.

 

 

 
 
And Katy. 

They live on in our hearts, and especially in the hearts of those who knew them best. 

Don’t listen to silly Hollywood stories and look at ridiculous magazine covers to find a hero. 

I guarantee there are many special heroes around you every day who could be your example of strength and courage. 

I’m so blessed to live with one!  And to know many others!