Category: Epilepsy

You Might Live With Autism If….

 

Here are a few snippets of life with Aaron from the past few days – otherwise known as:

 

You might live with autism if:

 

·       You poor one cup of coffee for Aaron, knowing that he always has three cups.  You tell him that you are brewing more coffee and will pour his other two cups when the fresh coffee is ready.  But he won’t let you take the one cup to his room until the other two are poured and ready to go.  You don’t take ONE cup of coffee to his room…..ever!  You take THREE cups!!

 

 

 

·       You hand him a piece of sausage that he wanted in a napkin, to be eaten similar to a cookie.  Silly you!  Sausage goes on a plate, not in a napkin.  You just do it with no argument, because you know that arguing about these critical matters is useless.

 

 

 

·       Aaron has watched four seasons of The XFiles.  For Christmas he received the remaining five seasons.  He decided to finish watching The XFiles, but instead of starting with season five, he is going to start watching from the beginning – again.  You try to talk him into just starting with season five since he’s already watched the first four and he seems to agree, but later walks back into the room, obviously in discomfort.  You give your blessing to him starting with season one, despite how long it will take now to watch the entire series….because you know he’ll do it that way anyway.  So you may as well remove the burden from his shoulders and let him fully enjoy the ENTIRE series, watched the way he wants….all together the way they should be.

 

 

 

·       Aaron had a couple seizures during the night, so on Saturday he was very tired.  He decided to lay back down later in the morning.  Then you have this conversation:

 

Aaron – Will you get me up?

 

Me – Sure.  What time do you want up?

 

Aaron – Before 1:00

 

Me – OK, I’ll get you up before 1:00.

 

Aaron – What time is that?

 

Me – I don’t know.  Just sometime before 1:00.  What time do you want that to be?

 

Aaron – I know!  Get me up at 1:00.

 

Bedroom door closes.

 

Bedroom door opens.

 

Aaron – How about 12:30?

 

Me – 12:30?  Are you sure?

 

Aaron – No.  Let’s do 1:00.

 

Trust me.  I got him up at 1:00.  Not 12:59.  Not 1:01. 

 

1:00!!

 

 

 

·       Aaron has a bad headache after having seizures.  While we changed his sheets, because it was Saturday and we always change sheets on Saturday, I asked him how his head was feeling.  He told me it still hurt, so I made a sound of concern.  You know, a soft murmuring sound…..mmmm.  Aaron’s response:  “You’re weird, Mom.”  He doesn’t appreciate soft murmuring sounds of concern….or crying…..or most hand gestures…..

 

 

 

You might live with autism if:

 

·       You go on a walk with Aaron and he finds a “thorn seed pod,” as he calls it, and he carries it proudly home.  It is given a place in his room among all the other treasures he has found on walks, in stores, at his day group, etc.

 

 

 

·       You go on another walk and Aaron finds a feather this time, which he carries for the remainder of the walk, trying to feed it to our Great Dane…who has no interest in feathers that anywhere matches Aaron’s.

 

 

 

·       You go to the grocery store and as you look up from the self check-out register, you see Aaron sitting on the empty display shelf in the front of the store.  Smiling.  Content.  Not one bit embarrassed. 

 

Which is how I know I should be with Aaron, even after I say, “Let’s go, Aaron.”  And he answers with, “OK, babe!” 

 

“How come you say only Dad can call you babe?” he asks for the zillionth time. 

 

And for the zillionth time, I know that life will never be mundane or usual with Aaron. 

 

You might live with autism if:

 

·       You know it’s really all right that life will never be mundane or usual with Aaron.  Most of the time it’s fun.

 

 

 

·       You think of song titles at times like this.  Titles such as “I Like You, Babe.”

 

 

 

·       And thinking of what Aaron says, not all the time but most of the time, makes you smile.

 

 

 

 

 

 

Can You Be Sure?

Aaron had a seizure at 4:30 this morning.  It was around two minutes long, shorter than some but always too long.  No seizures at all is definitely preferred, but that doesn’t seem to be what God has planned for Aaron in his life.  His nocturnal seizures are why Gary and I still sleep with a baby monitor on our nightstand.  Aaron knows that I go into his room when I hear a seizure and that I’m there to help him as needed. 

Aaron got out of bed around 7:00.  I would need to look in his log book that he keeps to see the exact time. 

OK, I just snuck in his room and took a peek.  He wrote down his getting out of bed time as 7:02.  Isn’t he funny and amazing?

He drank his three cups of coffee, as always…..and he bugged me about a fourth cup, as always.  He said his head hurt, too, as always it does after a seizure.  I can only imagine.

And as always after a seizure, he decided to go back to bed.  He told me his plan, but he wasn’t forgetting about that fourth cup of coffee.

“Can I have a fourth cup when I get out of bed?” he hopefully asked.  And I gave him some hope that he could.  He has no idea what all I would gladly do for him on these seizure days.  I try not to show my hurting heart generosity too much, either, because good old Aaron will jump on that like a tick on a dog.  Forget the fourth cup of coffee!  Let’s go for five or six!

After Aaron had the assurance that a fourth cup of coffee was a real possibility, he started to walk away.  But he came back to the top of the stairs, one more request on his mind.

“Can you make sure I don’t have another seizure in bed?” he asked me.

Oh, if only I could!  I might have to think about granting a fourth cup of coffee, but if I could grant that my son have no more seizures then I would do it in a flash. 

I knew what Aaron meant.  I try to get him to express himself more clearly, so I asked him how I was supposed to do that.

“Can you hear if I do?” he clarified.

“Yes, I’ll hear if you do,” I answered.  I assured him that I had the baby monitor on right beside me and that I would be listening.  He was satisfied with my answer and with the knowledge that Mom was keeping her ear open, so off he went to bed. 

It’s sad to see that Aaron shows this fear of having a seizure.  I don’t blame him one single bit.  He doesn’t remember the seizures, but he’s seen friends at his day group have them and so now he knows what they look like.  And he certainly knows what they feel like when he wakes up with a bad headache, sometimes a bitten tongue, losing his sense of taste, and other complications.  It’s a very hard thing to see your child endure this.  Harder still to see your usually unexpressive adult child begin to verbalize his fears. 

Victory in the verbalization…..sadness in the expressed reality.

I am Aaron’s strength right now.  I am his comfort and his hope.  Me….and the baby monitor.  Aaron is depending on us to be there for him and to help him if he has another scary seizure.

This morning I had planned to write about Nehemiah and the guarantee that he gave the children of Israel as they built the wall of Jerusalem.  I didn’t know I would have this illustration from Aaron.  I would rather not have it.  I would rather use another example from some other scenario in my own life that doesn’t involve him.  But this is where God has us.  This is His sovereign plan, one that I trust even when it hurts.

The Jewish people were rebuilding the wall of Jerusalem, but there were enemies who didn’t want them to succeed.  These enemies used words of discouragement and ridicule, but when they saw that the Israelites were serious about rebuilding the wall they changed their tactic.  The enemies became intimidating, threatening to kill not only the workers but their families as well. 

The Jews became scared.  The enemies’ threats were working.  In Nehemiah 4:10, it was said that the worker’s strength was failing.  That word, “failing,” meant to stumble or totter.  The workers were literally tottering under not only the physical work they were doing, but especially they were stumbling emotionally and spiritually under the continued threats they were facing from their enemies. 

They were scared.  And in verse 14, Nehemiah said that when he saw their fear he spoke to them….to the nobles, the officials, and to all the people who were so afraid.  Here’s what he said:

“Do not be afraid of them!  Remember the Lord Who is great and awesome, and fight…..”

This verse has been on my mind for a couple weeks now.  I’ve had some fears and concerns in my life.  Health issues for Aaron, for Andrea, for Gary.  Aaron’s behaviors that impact him and us so much.  Andrew adjusting to a difficult new job.  So many other things that jump around in my brain during the dark night hours when I’m unable to sleep…..

I could name fears that I know so many of our friends are experiencing.  Life has changed in a moment for some.  Then there’s the continuing impact of those changes.  Strokes….dementia…..upcoming surgeries…..serious infections…..the diagnosis of a child with a potentially life changing syndrome…..ongoing multiple children with special needs….exhaustion…..job uncertainties…..

Our life stresses are like the enemies of the Jews in Nehemiah.  They surround us, threatening us with their potential or certain life changes.  We sometimes stumble under the burden of it all.  Fear is very debilitating.  Our mind goes places it shouldn’t but it’s so hard to keep from doing that.

This is why Nehemiah’s words have meant so much to me lately.  I need to refocus my focus.  I need to choose what I allow my mind to dwell upon.  The answer is simple, but difficult, because the enemy wants me to stay glued to my fears and my worries…..both the known and the unknown.

But…..REMEMBER!!

Remember the Lord!!

The Lord Who is GREAT and Who is AWESOME!!

God’s got this….all of this.  Whatever the enemy is throwing at us, whatever we see around us, whatever we hear in our head in the dark of the night….is NOT what we are to remember or to dwell upon.

Our God is great and He is awesome.  The battle is His, not mine! 

And so I fight, but I’m not the one fighting.  I am allowing God to fight for me as I pray and give Him my battles and my fear and my worries.  When I feel that familiar fear being thrown at me from the enemy outside the walls of trust, I remember and I remind myself that God is the One Who will fight for me.

The Lord Who is GREAT!

The Lord Who is AWESOME!

I’ll hear you and I’ll be there if you have another seizure, Aaron.

“Can you be sure?” he asked.  “Yes.  I’ll be sure,” I answer.

I’ll hear you and I’ll be there in your fears, God says to me.  

“Can you be sure?” I ask.  “Yes.  I’ll be sure,” He answers.

“Our God will fight for us!”  (Nehemiah 4:20)

Remember!  The Lord!

A Little Understanding, Please

I shouldn’t have let Aaron go to his day group on Monday.  His mood was pretty foul at home, but he wanted to go and so I let him.  He only wanted to go because he knows that having a special meal on Friday night depends on him going to Paradigm every day.  Funny how these rewards can come back to bite me.  He was pleasant on the drive across town.  But the way he slammed the van door when he got out was a sign to me that it might be a rough day.  And it was.

I knew when I got the phone call from Paradigm that afternoon, and Barb said a quick hello before putting her phone on speaker.  That’s usually what she does when she wants Aaron to also talk, and wants him to hear me.  Aaron was yelling, very upset and belligerent.  It had been a no good, very bad day…..and was soon to get even worse.  At this point, Aaron didn’t want to ride home with his driver.  Last August, we hired an agency to bring Aaron home from Paradigm in the afternoons.  Aaron likes going from point A to point B, with no stops in between.  But the route includes other clients that go home before him, so this had become a trigger for Aaron.  On his no good, very bad day….Monday….he did NOT want to ride anywhere but home. 

Once Aaron is upset…really upset….he’s like a volcano that must erupt until the flow of anger is over.  His autism prevents him from calming easily.  It prevents him from listening to reason or being reasonable.  He has very few filters, so words fly when he erupts, and some are inappropriate.  He decided on Monday to go ahead and ride home with the driver, knowing that he really had no other choice.  But he promptly told her to shut up when he got in the car, and he refused to put on his seat belt.  The whole way.  Not good….not good at all.

Shortly after he got home, upset still but calming some, my phone rang.  It was the agency that provides his rides home, telling me that they were very sorry but that Aaron would no longer be allowed to ride with them.  I understood, but I tried to do some explaining and then I asked for a second chance….but two days later was told there was no second chance.  Good luck with finding a new driver….it’s been nice working with you…. 

Back to Monday.  After the phone call, Aaron looked stricken.  He decided to try to rectify things by offering to help cut the ends off the asparagus I was fixing for supper.  I let him.  And during supper, out of the blue, he asked if he could write a get well note to our friend, Atha.  She’s been very sick and is in a rehab center.  I got him a note card and he wrote her his succinct get well wishes.  They were words of gold to me that night.  I think they will be for Atha as well.

Later, though, as Gary and I tried to absorb the events of Aaron’s day – especially the loss of his ride home, which is huge – things went downhill fast.  Aaron ended up realizing that we were trying to bring up the recurring subject of him moving out one day….living in a residential setting. 

“You could live with some friends, Aaron!” we said.

“I DON’T WANT TO LIVE WITH FRIENDS!!” he yelled.

And he stormed up the stairs as he told us how much he hated us.

But within seconds he was stomping back down the stairs, sitting in the recliner and rocking furiously.

“You just want me to leave!” he said, with tears coming down his face.

We tried to explain….tried once again to reason with him.  It doesn’t work.

“Aaron, Rosa lives with her friends and comes home on weekends.  And Shauna, and Natalie….”we told him.

“I DON’T CARE ABOUT ROSA OR SHAUNA OR NATALIE!!” he again yelled…..and again stormed up the stairs.

This went on for a long time, until finally he….and we….were spent and there was nothing else to say.

Tuesday was a better day at his day group, for the most part.  I drove to Paradigm in the afternoon to pick him up, fighting my frustration.  It didn’t help me at all to see and hear Aaron being rude to another client.  I was distant and silent as we started the drive home, finally responding some to Aaron but being rather cold.  That wasn’t a good choice for me to make.

“Mom!” Aaron said.  “You’re ‘iknorin’ me!”

The volcano erupted once again when we got home.  Aaron kept saying over and over that I had ‘iknored’ him.  He was crying hard, and my heart was breaking.  I tried to explain, but to no avail.  He pulled a large picture off his wall, taking some paint and dry wall with it.  He ripped a dollar bill into pieces.  He very loudly slammed his door several times.  And he told me that he was going to put a sticky note on his door that said, “Mom is an idiot!!” 

I sat on his bed.  He had his headphones on as he looked at a video.  I told him again that I was sorry, and I asked him to forgive me.  All he could do was cry and say, “You were ‘iknorin’ me!!”

So I said the words that always reach his heart.

“Aaron?  Would you like to go get a Slushie from Sonic?”

Without even a pause he quickly said yes, and so we got in the van and got his slushie.  I parked in the Dillon’s parking lot, away from others, and he slurped while I talked.  He calmed and I tried to explain things, knowing full well that Aaron doesn’t relate to most of our explaining sessions.  Finally I was done.  There was quietness before Aaron spoke again.

“Mom?  There’s a reason why you shouldn’t watch Alien Vs. Predator 2.”

He didn’t notice my deep sigh or the shaking of my head.

Oh, if only Aaron could convey to us his hurt and his anger with reasoning words instead of hard and hurtful words!  Or curse words.  Or just totally ignoring the situation and talking about aliens. 

Aaron often doesn’t even know why he’s frustrated.  He just is on some days.  As he escalates, so do others around him, and that only further compounds the issues.  I reacted with ‘iknorin’ him on some of the drive home, which I really shouldn’t have done, so he reacted.  Did he ever!  But he was afraid that I didn’t love him anymore.  He’s terrified of losing my love, but he can’t verbalize that.  So he reacts with anything that comes to his mind that demonstrates his deep fear and hurt.  That usually means that he breaks something, like his watch or his glasses or his picture on the wall or the dollar bill.

Why am I telling you all of this ugliness?

I’m sitting here listening to Aaron’s monitor….listening for another seizure which may come.  He had a long seizure at 5:30 this morning, and only one seizure means that usually more will follow during the day.  He’s napping in his room and I’m on alert as I go about my day. 

I tell you the ugliness of his behaviors because really, those behaviors hold him down more in life than do his seizures.  It’s a raw, hard reality for many parents of special needs children.  Those sudden, awful, interrupting, exhausting behaviors.

I can explain seizures.  Other parents can explain various visible special needs of their children, or even special needs not seen but understood.    But behaviors?  So frustrating….so embarrassing…..so condemning for both child and parent.

But we need those behaviors to be understood as well.  And we as parents need to always work to understand them, too, especially in the heat of the moment. 

I have friends who would say to others, “Please, please understand my loud and uncooperative and bizarre and hateful child.  Please just try to understand, and not judge and not condemn and try to give advice or lectures.  Just understand, a little even.  Sometimes that’s all we can manage, too.  A little.”

And love a lot.

Tuesday night, as Gary was going to bed, he said, “Hey Aaron.  Come here.” 

I thought that Gary had something cool to show Aaron, so I looked around the corner of the kitchen to see what it was.

And as Aaron walked toward his dad, Gary held his arm out and gave Aaron a hug.  Aaron even responded!

I blinked back the tears.  Sometimes it’s hard to love Aaron, honestly, but we must….and we do.  I was very thankful for that sweet picture that ended our second no good, very bad day with Aaron.

One more thing.  I went inside Paradigm yesterday when I went to pick up Aaron.  What a lifter-upper that was!!  Those wonderful clients, with so many needs, have so much love to give….even on or after the bad days.  Love for me and more importantly, love for Aaron.  We could hardly leave for all the hugs and talking and smiling. 

Every day is a new day, as Barb says.  A fresh new start.

“This is the day which the Lord has made.  I will rejoice and be glad in it!” 

But sometimes I AM glad when they’re over.  J 

Playing Skip-Bo at the end of one of those rough days

Contented New Year!

I decided last night to sit by our Christmas tree and do a little reading by the soft glow of the lights and a table lamp nearby.  The tree will be down soon, although I’m resisting that notion.  The rush before Christmas and the craziness during Christmas doesn’t afford many opportunities to just sit quietly by the tree, relishing its beauty and enjoying its warmth.  Now the seasonal rush is over and I’m not wanting to part with my tree.  But I must.  It’s a new year…..a new season…..and normal life returns. 

The book I was reading is authored by Richard Swenson, MD.  The title is Contentment: The Secret to a Lasting Calm.  This title makes me smile as I think of our life with Aaron, which is rarely calm.  God has much to teach me and I wonder if I will ever learn.  I recently read Ann Voskamp’s book, One Thousand Gifts, which stresses the importance of gratefulness.  Swenson’s book is similar, but develops the issue of being content despite our surroundings.  Here is a quote I read last night:

“The best kind of contentment, the truest kind, is a state of feeling unencumbered.  It is a state of absence of fear or anxiety about what we own or don’t own.  It is about freedom from comparison, regardless of what our neighbor has.  It is about lack of pretense, so devastating to authenticity and so tedious to maintain.  And the best kind of contentment, the very best, is divorced from circumstances.”

My circumstances so often dictate my mood, and there in the bullseye of my life…..my circumstances…..stands Aaron.  We love Aaron.  We have chosen to keep Aaron at home at this season of his life.  Yet living with Aaron is like riding a roller coaster as we experience the highs and lows of his health and behavior issues.  This holiday of Christmas highlights all of Aaron’s needs and emotions like no other.  He’s excited, happy, overwhelmed, stressed, and frustrated….just like the rest of us.  But he certainly doesn’t contain or handle those emotions, most of the time, in ways that are acceptable.

Aaron is like our gifts under the tree, all different shapes and sizes and wrapped in various colors and designs of paper.  We have the giving side of Aaron that makes us proud, but can also cause some trouble.  The Friday before Christmas, Aaron and I went back to see his six friends at their residential home.  We took pizza again, and also took them some Christmas gifts.  Aaron was so happy to do this, as he loves to give.  He helped me put the gifts in bags the night before, turning up his nose in disgust at the yucky lip gloss and body wash.  We laughed and had a great time, as we also did when we visited the girls and gave them their gifts. 

Aaron also gives money away at his day group, which is not allowed.  It’s a nice gesture from Aaron, but it isn’t what he is supposed to do.  It gets out of hand.  I sometimes let him take some gum that he can give away, or cookies, but giving others his money is something that Aaron has always wanted to do, even as a little boy.  We dealt with that issue cropping up again over Christmas as well. 

We have Aaron’s health issues to always monitor as we listen for seizures during the night or when he naps.  Thankfully, he didn’t have any seizures that we know of during Christmas.  But he broke out in some ugly bumps, so on the Monday before Christmas I took him to the doctor.  Gary was off that day, and we were going to take Andrea and her boyfriend Kyle to lunch and a movie.  We were looking forward to that so much, but instead I found myself seeing to Aaron’s needs once again.  And once again I had a choice to make concerning that persistent issue of contentment, despite my circumstances.  Sure enough, Aaron had a staph infection and so I was glad I had taken him in, but still disappointed about our change of plans. 

Aaron’s behaviors come in assorted shapes and sizes, and can change quickly.  Life is pretty stable with Aaron at home on a normal day, but when he goes to his day group he becomes loud and full of behaviors.  The same is true at home over Christmas, with all the change in his routine and the house full of people.  Aaron has to share his time with others and his structured world is turned upside down.  All the talking and laughing and extra noise is often overwhelming to him.

Andrea’s boyfriend, Kyle, was here for the whole week.  We were concerned about how Aaron would react to him.  But Kyle was a natural with Aaron, treating him as an equal and being totally comfortable around him.  What a relief!  Kyle certainly passed the Aaron test!  Even when Aaron became unkind, Kyle didn’t show any reaction and he understood.  Aaron insisted on playing Christmas Bingo with us, which he usually detests, and also even played the Hershey’s Kiss game…..trying to open the kisses while wearing bulky silicone gloves.

Aaron can’t stand the silliness of games and parties, so playing these games was a stretch for him.  Aaron targeted Kyle during the first Bingo game he played with us, being rude to Kyle as he blamed him for his own discomfort and frustration.  The next time Aaron played with us, the following night, he did much better.  And during Skip-Bo, while there was the noise of Star Wars being watched by Andrea and Kyle in the background, Aaron became very bothered by the lack of his usual quietness as we played. 

“I wish Kyle would leave this house!” Aaron said, over and over. 

“But Aaron,” I replied.  “You like Kyle and you’ve had fun with him.  Let’s talk about what’s really wrong.  You just don’t like all the extra noise and things being so different right now.  Right?”

“I wish Kyle would leave this house!” came Aaron’s response. 

Sigh.

Aaron also had similar comments toward friends of ours that spent the night with us this week.  He went from making them laugh the night before to being disrespectful the next morning.  I understand the reasons because I understand how Aaron thinks, but it’s still very embarrassing.  Thankfully, Dawn has a special needs daughter who also gets overwhelmed, but still…..

There go my circumstances again!  And the choices I must make, and often fail at doing so correctly.

Up and down!

And there were many good moments…..special times with Aaron as he enjoyed the week of Christmas.  He LOVES Andrea’s dogs, and they generally tolerate him pretty well.  Christmas morning was especially sweet with Aaron and Darcy.

And Aaron makes us laugh with many of his comments, of course, and his actions.

So here we are, with memories of Christmas still fresh and with a new year just beginning.  I need to find Aaron a new autism doctor…..need to think about all those day group behaviors and why he acts that way there……monitor his sodium levels…..deal with the seizures and the meds that help, but also cause some of his behaviors…..and much, much more.

And to work on my own contentment, like the Apostle Paul said, in whatever state I am….to be content.  In a state of sadness, or a state of frustration, or fear, or embarrassment, or turmoil, laughter and joy…..

Swenson says, “Contentment is our glad submission wrapped in God’s providence.  The doctrine of providence explains that God has a plan, and that it is a perfect plan.  Since He is all-powerful, it is impossible for us to thwart the plan.  We either accept it or we kick against it, but regardless, the plan goes forward.”

Yep.  Just like Aaron goes forward, and we experience the highs and lows, the ups and downs….often hanging on for dear life. 

Instead of Happy New Year, I wish for myself a Contented New Year, despite whether I am feeling happy or not.

And so I wish that for each of you as well.

Contented New Year, everyone! 

  

Disappointments

Disappointments.  Not a very catchy, interesting title, is it?  Not even encouraging!  But disappointments are universal.  We all have them in one form or another, nearly every day.  At my age, I’ve had enough serious disappointments that I now count my blessings when my disappointments are more along the line of a bad hair day, getting a cold, missing a fun day with friends, or not getting in on a great sale. 

Disappointments related to Aaron usually come in two varieties.  We are either disappointed IN Aaron for some reason, or we are disappointed FOR Aaron.  We are usually disappointed IN Aaron because of his behaviors.  We are usually disappointed FOR Aaron because of something that hurts his heart, and therefore ours as well.

On November 6, two days before his birthday, I was going to take Aaron to one of Paradigm’s residential homes so that we could celebrate with some of his friends.  We were going to take pizzas and have fun.  Aaron was so looking forward to it!  But he came down with a stomach virus and was unable to go.  How disappointing!  We were disappointed for Aaron, very much.

So a week later, this past Friday, we made the same plans again.  But on Friday afternoon, the plans were canceled once again.  One of Aaron’s friends was having a very rough day and it wouldn’t have been a good situation for us to be in the home that night, no matter how much pizza we brought.  It was going to take time for this person to calm down.  In fact, this client had some words for Aaron during the situation, much like Aaron does when he has a meltdown, and it really hurt Aaron’s heart.  And it hurt and disappointed us, too, for Aaron.

All of this made Aaron act out.  He banged on the car that brings him home, making a small dent in the front of the car.  He yelled at me when he got home, escalating as I tried to talk to him.  He looked in his Friday goodie bag that sat on the kitchen table, and then knocked it on to the floor.  This is Aaron’s way of handling his own disappointments.  Instead of talking about his hurt, he becomes angry.  Talking only makes him angrier, especially my talking to him. 

I had two disappointments going on that evening.  I had my disappointment for Aaron as I was hurt for him in his hurt.  And I had my disappointment in Aaron…..in his behaviors that can’t be allowed, but sometimes can’t be stopped.  His defiance was understandable but unacceptable.  I hid his goodie bag from him as a tangible sign that his behavior was wrong…..and I wished with all my heart that he could just verbalize his disappointment instead of acting it out with harsh words and defiant behavior. 

He finally settled down enough to show an interest in going out to eat dinner instead of yelling, “NO!” as he had earlier.  So before long we met Gary at Outback, where we enjoyed dinner together and especially enjoyed seeing happy Aaron return.  In fact, before we left the house to meet Gary, Aaron said, “I’m just disappointed.”  Wow!!  Victory in three little words!  Aaron expressed his disappointment verbally and I praised him for that as I told him that I understood, and that I shared his disappointment.  I shared it so much that I even watched The Blob movie with him that night.  That movie brought me to a whole other level of disappointment, trust me.  It was painful!!  But Aaron was happy!

He had a rough morning yesterday, Monday, as he returned to Paradigm.  But the afternoon was much better.  Today he got up very early, and at 6:11 I was in the kitchen listening to him talk about The Blob movie that we had watched.  I’m sorry, but 6:11 is a little early to be handling talk about The Blob.  I’m still not over that movie.

Our morning went well, and I was happy for Aaron to be so happy as I dropped him off at Paradigm.  But shortly before 2:30 I got a call.  Aaron was having a seizure.  I had just gotten home from spending the day with my elderly friend, so I was thankful that I was free as I drove to pick Aaron up at his day group.  Poor Aaron!  Another disappointment, this time more for me.  Disappointment for Aaron as he faces these awful seizures……his badly bitten tongue…..his headache…..the interruption in what should have been a good day.  He handles it so well, thankfully unaware of how sad I am for him.

This morning, as I had my quiet time, I did what I sometimes feel compelled to do.  I asked the Lord, as I turned the pages in my Bible, to give me a special word…..something He knew I needed on this day.  Today I flipped from Romans, where I have been reading, back to the first place my turned pages led….to Malachi.  And there in Malachi 3:6 I read these words:  “For I, the Lord, do not change.” 

Simple words, but I knew they were somehow for me today.  As I drove home with Aaron beside me, his breathing having that certain post-seizure sound, I looked up at the sky as very dark clouds rolled in.  There was a mix of bright blue, but coming in were the dark stormy clouds that promised rain.  Our day was changing from bright sunshine to dark cloudiness, just like my day with Aaron had gone from bright happiness to dark seizure concerns. 
 
Disappointments.  Changes.  We face so many of those, don’t we?  And I didn’t wonder anymore why God gave me that random verse this morning in the little book of Malachi.  “For I, the Lord, do not change.”  So in the middle of disappointments, whatever they may be…..and in the middle of the changes that those disappointments often bring…..we can as God’s children stand firm in God’s promise that He does not change.  Ever.

Just stop and think about what that promise means.  God never changes.  He is always the same, loving us and instructing us and being there for us.  No amount of world changes, of family changes, of my own changes….and the disappointments they bring….will ever change God. 

I’m very, very thankful for that promise today.  I’m very thankful that God gave it to me…..humbled, really, as I always am when God speaks to me so kindly and specifically. 

One more thing.  I’m never disappointed in God.  Never.  And I know that He will see us through all of our disappointments, including the ones IN and FOR our Aaron.     

From God’s Heart to My Lips

Was it just last weekend that I flew home from a wonderful vacation week in Alabama?  It seems much longer than a week.  There are reasons for that.  But first, I did enjoy a great time of relaxing with my dear friend Glenda in her beautiful home.  Bruce and Glenda are friends of ours from way back.  Gary and I met them at Gary’s first assignment following his graduation from flight school in 1983.  We did lots of life together in Colorado Springs while stationed at Fort Carson, and then later as we both lived in Germany.  It had been 23 years since we last saw each other.  Bruce and Glenda very kindly flew me to Alabama for several days of rest and relaxation.  We took up right where we left off, too, not missing a beat.  Glenda and I talked a blue streak last week, and I think we pretty well caught up on everything.  It was really a refreshing time for me.

In the airports and on the planes, I finally finished reading Ann Voskamp’s book, One Thousand Gifts.  What a challenging book this has been for me!  Challenging me to be thankful….grateful…..in all situations.  Our friends, Kurt and Jill Grier, gave me this book while Aaron was in the hospital last June.  What a perfect setting for this insightful book to be given! 

So flying home last Saturday, I finally finished this book.  At the very end, Ann wrote this:  “Every breath’s a battle between grudgery and gratitude and we must keep thanks on the lips so we can sip from the holy grail of joy.”  There is a reason that God let me read that line on that day…..the day I was flying home…..to life at our house.

I heard him before I saw him.  I was near the escalator in our beautiful new Eisenhower Airport here in Wichita.  Home at last.  I was focused on that down escalator when I heard, “MOM!!!” 

I looked over to my left, and there was Aaron.  He had just bounded off of the comfy chair where he was sitting near Gary as they waited for me to round the corner.  How appropriate that the very first word I heard when I reached home was that word that Aaron says the most.  Mom!

His smile was huge as he came toward me, rubbing his hands together in great delight.  Delight to see me?  Yes, in his own way.  But more delight, I believe, in the fact that he could finally tell me in person what he was anxiously waiting to say.  “MOM!!!  I finished watching…..”  And he was off, words tumbling over each other as he told me about the latest movie he had just completed.  Aliens and battles and robots and laser vision…..all of it, coming out in a loud rush. 

He had no interest in my trip home.  He only cared that I WAS home.  He did give me a hug as I reached out to him, but he didn’t stop talking.  Gary and I hugged and kissed to our typical background music of Aaron’s constant talking.  We’ve learned to jump in quickly between his words in order to say our own to each other. 

There is no slow re-entry into life with Aaron.  He blows in with no interruptions allowed, words and hands flying, expecting us to show great interest.  And we opened the door at our house to our large dog, to Aaron following and talking, to trick-or-treaters, to the time change, and to me coming down with a stomach bug that evening.  Interesting.  What was that quote I had just read?

It gets better.  And let me again quote dear Alice Zwemke:  “I’m not complaining.  I’m just reporting.”  This week….

On Monday I took Aaron to the dentist for a cleaning.  A small cavity was found.  On Tuesday, I took him back to the dentist for a filling.  He was a little sullen and quiet (thankful for the quiet part!) on Monday, but on Tuesday he was full of smiles and talk.  He even carried in his Happy Spider from Hawaii that Glenda had sent him, and kept Happy Spider on his lap while he got his tooth repaired. 

 
By that evening, Aaron still had a crooked smile from his tooth procedure.  The dentist said not to worry, and sure enough by that night he had returned to normal.  So on Wednesday he was able to finally return to Paradigm, his day group, even though he complained of not feeling well.  That afternoon he had a big seizure there, so I went to pick him up, carrying clean clothes since he was incontinent during this seizure.  He had another seizure shortly after going to bed that night. 

On Thursday, he woke up with my stomach virus that I was kind enough to share.  Between bathroom visits, he slept nearly all day.  No Paradigm.

Yesterday, Friday, he still wasn’t feeling great so he stayed home again.  No Paradigm.  By the evening he was more himself, so I foolishly let him enjoy his pizza night.  I felt sorry for him because we had planned to have a pizza party at one of Paradigm’s residential homes with several of his friends on Friday, and we had to cancel it.  It was an early birthday celebration for him.  So pizza it was, at home……which he later threw up as he sat in his chair in the family room.  Poor Aaron.

And I now have a chest cold.

So here we are.  Life at its best, right?  That quote again….we must keep thanks on the lips.  I’ve been practicing that attitude this week as best I can, failing at times but also so aware of the power of gratitude that is so dear to God’s heart.  From God’s heart to my lips.

I’m thankful for our washing machine and our dryer; for bleach; for hot water; for Aaron’s excellent waterproof mattress pad; for Gary’s hard work in providing for us so that I don’t have to work; for our gorgeous fall colors to enjoy as I look out the windows or drive around town; for our large kitchen trash can last night during the throwing up episode; for not being in the hospital like some I know and love; for all of this happening while I am home and not out of town; for God’s forgiveness when I fail; for the love of friends and family…..and for so much more.

For Aaron, who just rolls with the flow….which is a pretty yucky saying right now, actually.  Sorry.  Anyway, he handles things better than most.  He’s more concerned with his routine than with his disappointments.  I’m carrying the disappointments.  He carries the changes to his routine.

“Mom, I’m going to bed now,” he said on Wednesday night.  “I’m not going to bed at 10:00.”  It was 8:23 when he laid down and I turned off his light.  But soon I saw the light from under his bedroom door.  I asked if he was ok.  He told me that he was fine…..that he was just writing down what time he went to bed in his log book.  Well, of course.

Aaron showers at 8:00 or a little later every night. He showered in the late afternoon on Thursday.  “Mom?” he asked.  “Because I just showered, does that mean I have to shower by 8:00 tonight?” 

Wheel of Fortune is still being turned on at 6:28, not 6:27, though….so that’s a good thing.  And Mom must be reminded to wait on the coffee maker to perk more coffee in order to fill that third cup before carrying them up to Aaron’s room.  One doesn’t take TWO cups of coffee to Aaron’s room.  It must be THREE cups, for crying out loud. 

Sometimes Aaron weighs us down on many levels.  But I’m thankful for the blessings that are many, the smiles that are frequent, and the laughter that comes unexpectedly. 

“Mom!!” he said the other morning as he stared down into his empty coffee cup.  “Why is there coffee bean powder in my cup?”

See what I mean?

 

 

Shake and Toss

I remember when Aaron was just a little guy and we were stationed in Germany.  Boxes of gifts from family would arrive before Christmas, full of presents for all of us.  It was so exciting to place the bright packages under our little tree and see the happiness on the kid’s faces as they especially noticed each gift that had their name attached.  On Christmas morning, we would open our gifts and watch with the delight that all parents experience as our children could hardly contain their excitement.  It was a time of pure joy!

But Aaron quickly learned something about his gifts.  Some of his presents contained clothing.  Others contained toys.  Toys tend to rattle.  Clothes don’t rattle.  So smart little Aaron would pick up a gift and give it a shake.  If all was quiet inside the box, he would then toss it over his shoulder and move on to the next one.  It really was hilarious.  We caught him in the act on the video that we were making.  Shake and toss.  Shake and open.  Shake and toss.  And Aunt Sandra, after seeing the video that we mailed to her, declared that she would never send another gift of clothes to Aaron ever again! 

We laughed and laughed over that.  “But wait,” I said.  “Clothes are wonderful!  Maybe not to Aaron, but to us they’re great!!”  Gary and I knew the value of  clothing for our children when we lived under a tight budget.  Aaron could care less, but he just didn’t understand their importance. 

Life’s gifts come in all shapes and sizes.  Some we know right away are amazing and will be treasured forever.  Others are uncertain.  And then there are those gifts that we want to shake and toss away.  Gifts of hardship and pain……gifts that aren’t fun…..that definitely weren’t on our want list. 

I recently received a wonderful gift from some old friends of ours.  We came to know Bruce and Glenda at our first military duty station in Fort Carson, Colorado.  Then we were also stationed near each other in Germany.  Our kids played together when they were very young.  Bruce and Glenda live in Alabama now, and are flying me there to spend a few days.  I haven’t seen Glenda in years, though we’ve stayed in touch.  It’s a gift that I didn’t need to shake!  I knew right away what a precious gift it was.  I leave today, in fact, and am so looking forward to this getaway with a dear friend. 

Another gift of mine, in his own amazing way, is our Aaron.  Of course, he’s our son and I love him with all my heart.  His special ways of living life due to his seizures and autism, however, make him a very unique gift.  Trust me, there are plenty of days that I wonder about this large gift of Aaron.  There are many times that I want to shake and toss.  I want to shake and toss Aaron!!  But those moments are always balanced by the spurts of joy and laughter that he brings into our lives.  He’s the whole package, that’s for sure!

For instance, last Friday we were listening to a CD on our way to his day group.  He likes it when a song totally ends before he gets out of the van at Paradigm.  As we pulled up to the curb on Friday, the song seemed never ending.  I had errands to run and then an appointment at 1:00, so I finally told Aaron that I really had to go.  I told him that he could finish the song the next time we played this CD.  Aaron didn’t like that idea at all, but he finally agreed.  However, to register his disapproval, he gave me a resounding hit on my arm before he left the van.  It hurt!  And it made me very angry.  Yet off he strode as if nothing at all was wrong.

I drove away in frustration.  See what I mean?  Aaron can go from happy to hurtful in a flash.  It was a time I really would have shaken and tossed that gift.  Yet I know better.  I know that God gave us Aaron and that he is indeed a beautiful gift, not to be shaken and tossed, but to be opened and enjoyed.  It sure takes a lot of patience sometimes, though!  More than I often have on my own, for sure. 

Yet that evening, Aaron bounded in the house with a little wrapped butterscotch candy in his hand.  His driver, Paulette, had given Aaron a wrapped candy and then gave him one for me.  Aaron was so excited to give me this little candy, and wanted me to eat it right away.  It was close to supper and I told him I would wait.  Aaron made sure, for the rest of the evening, that I didn’t forget his gift to me.  He talked and talked about that candy. 

“It’s one of those sucking things,” he described.  And he ran up to my desk that night to retrieve the piece of candy and bring it to me, hovering nearby until I finally ate it. 

Aaron can go from hitting to hugging in no time.  From grouchy to giving.  His gifts are all over the place, but each one I must receive and enjoy.  Well, not always enjoy but at least try to understand and appreciate.

He stood in front of me one evening like this.

 

“Take a picture and send it to Andrea!” he said.  So I did just that as we both laughed at his silliness. 

He just came downstairs this morning.  One of the first things out of his mouth?  “Mom? What do you think of Megatron and Optimus Prime versing each other?”

And we’re off and running, as always.

I’m still unwrapping all the layers of this Aaron gift that we’ve been given.  And remembering the verse that I read this morning.

“For from Him and through Him and to Him are all things.  To Him be glory forever.  Amen!”  (Romans 11:36)

No shaking and tossing allowed.

 

The Answered Prayer

When Gary and I travel without Aaron, we must find a caregiver for him.  Plus we have Jackson, our 185 pound Great Dane.  We’ve had some wonderful caregivers over the years for both of them, but of course Aaron is our main concern.  Those that have cared for Aaron usually move on to their very busy college lives, their full time jobs after college, or to marriage with families of their own, so keeping caregivers is no easy task. 

A couple weeks ago, Gary mentioned that he sure wished it was easier for us to just pick up and go visit our other two children.  Andrea lives in Houston and Andrew lives near Indianapolis.  I realized that I hadn’t been making our caregiver issue a matter of prayer lately, so on that evening that Gary made his comment, I began praying about it again.  There are times that we can, and do, take Aaron on our trips.  But there are other occasions when it’s best for just Gary and me to go. 

The day after Gary made his comment, and I started praying, I shared my prayer concern with a friend in Texas.  I also shared it with Andrea on the phone that evening as she and I talked.  While Andrea and I were on the phone, I heard my text message notice buzzing in my ear.  I waited until Andrea and I were off the phone before checking my message.  I pretty well stared down at it in disbelief and praise.  You see, it was from our friend, Holly.  Holly watched Aaron some last spring.  She’s an excellent caregiver, but I thought that she was too busy with college and work to be able to watch Aaron anymore.  I hadn’t contacted her at all, or even said anything to her mother who is a good friend of mine.  So what did her text say?

She said that she just wanted me to know that if Gary and I ever wanted to get away, and if we needed someone to watch Aaron, that she would be glad to do that.  Wow!  I just stood there and thanked God for that very quick answer to my prayer.  It was such a direct, almost immediate answer to my prayer that it left me humbled and amazed.  Gary and I both recognized God’s hand.  So now what were we to do?

Andrew works for an NHRA race team.  They were having a race in less than two weeks in Dallas.  Last year we went to Houston to see Andrea, and then she went with us up to Dallas for the last day of racing.  Was God wanting us to do that again?  Would it even work out?  We checked with Andrea and she was excited at the prospect of us coming.  Andrew was as well, so we lined everything up with Holly and off we went to Texas.  God had answered and provided, and we felt confident that this trip was for a purpose.

That’s when things started happening.  Maybe I should make a list.

·         Holly lost her phone on the morning that we left and had to get a replacement.

·         Andrea hasn’t quite recovered from double pneumonia that she had in July.  She started feeling bad again just before we came, so she ended up not going to Dallas with us on Sunday.

·         On Friday night, Holly got a stomach virus.  She threw up seven times that night!  And she was trying to take care of Aaron.

·         On Saturday, Holly let her grandparents watch Aaron so that she could rest and recover.  Dennis and Freda are friends who know Aaron, and they did a great job. 

·         Holly did recover, but on Sunday Aaron had a seizure.  Holly knows seizures well because of her little brother who has seizures, but we felt terrible that she was having to go through this.

·         Gary and I went on to Dallas on Sunday, talking to Holly regularly and checking on Aaron.

·         Andrew’s driver, Cruz Pedregon, lost during the first run…..3.96 to 3.94.  That meant that the team would be cleaning and packing up to leave for Indy early Monday morning…..which meant that we wouldn’t really get to spend any time with Andrew.  So we decided to just head back to Wichita, feeling the need to check on Aaron anyway.

·         We ran into a huge traffic jam south of Ardmore, Oklahoma.  It put us an hour behind. 

·         My phone mysteriously died for a few hours.

·         And I even found a lone fire ant bite on my foot….a souvenir from Houston!  HA!

OK, now I know that none of these events are life changing, horrible things.  Why am I even writing about this?

I’m writing about it because the craziness of our weekend…..the stress that these happenings created for us….didn’t seem to match our amazing answer to prayer.  That answered prayer….the prayer for a caregiver….was the reason that we took this trip.  So if God provided answered prayer and the means for us to take this trip, why did so many things seem to fall apart?  Shouldn’t we have gone to Texas and just had the best time ever, with no worries?

I admit that I was scratching my head a few times, wondering why God seemed to push us out the door.  “Go, go!” he seemed to be saying.  And then to have so many things go wrong…..things that caused us some worry and kept our minds occupied on those worries to some degree. 

I have felt like God was trying to show me another element of trust.  I know I need to trust Him when He opens doors, but then allows some bad things to happen that make me question whether the open door was one through which I should have walked.  I needed to trust that God knew what He was doing when He led me to that open door.  God also knew what He was doing when He let so many things go haywire when we needed them to go smoothly.  Or we thought we needed them to go smoothly.

Answered prayer in the way that we want it doesn’t guarantee a trouble free life.  I may never know why God wanted Gary and me to take this trip.  I may never see all the connected dots that God sees….for me, for Gary, for Andrea, for Andrew, for Holly, for Aaron.

There were wonderful memories made.  Time with Andrea:
 

 

Time with our little granddogs:

 

 
 
Time with Andrew, though brief:
 

 

We had precious talks and laughter with Andrea.  We got to see the pit crew at the race form a circle and pray together right there in the pit area….and have Andrew tell us that he and Jay got that practice started.

And we had to laugh at Aaron as he tried to adjust to Holly being sick.  “Mom!” he exclaimed.  “I didn’t expect you to have someone here who is SICK!!” 

Let’s talk about the word “compassion,” dear Aaron.  He did go to Holly’s room three times on Saturday to say goodnight, and on the third time, instead of calling her crazy, he gave her a hug.  Very sweet!

Will I pray specifically again?  Absolutely!  God loves our specific prayers.  Next time though, when He answers, I might just say, “OK, God, are you 100% sure of this?!”  J 

 

A Special Vacation With Aaron

Last week Gary and I took Aaron with us on a vacation/work trip back home to our families in both West Virginia and North Carolina.  It had been way too long since Aaron had been home with us, so it was nice to have this opportunity to take him along.  One purpose of our trip was to meet with my brother and sisters in West Virginia, and to go through all the items that were left in our mother’s storage unit since her death in May.  Then we went down to Gary’s hometown in the North Carolina Smoky Mountains.  We hadn’t been there in ages, so we spent more time there than in West Virginia on this trip.

Aaron is really a good traveler, which is surprising in some ways since he loves his routine and loves his things in order.  But he also loves time with us, and he loves the snack bag that I fill before we leave, and he loves the motel, and he definitely loves eating out.  He makes sure that he nails down the fact that we ARE eating out as we hit the road bright and early on the day we leave.  When that fact is established to his liking, he then seeks to determine if we’re eating IN a restaurant.

We usually stop at this particular rest area in Kansas City, which overlooks both the Chiefs and the Royals stadiums.  Aaron was only slightly impressed with that, pausing long enough for me to take the first obligatory picture of our trip…..the first of many that he tolerated as we vacationed together.

 

He was far more impressed with the Cracker Barrel where we ate a midday meal later that first day.  He loved the stuffed turkey that he and Gary found in the gift shop, and couldn’t wait for me to press the turkey’s wing.  Aaron rubbed his hands together in delight as the turkey sang, “Hey, good lookin’, what you got cookin’?  How about cookin’ something else but me?”  We heard Aaron sing that song several times that day.  And he also played the peg game while we waited on our meal, beating Gary on his first try!

 

Our server there was so kind to Aaron, smiling at him with understanding and even bringing Aaron his very own travel map.  Several servers on this trip were that way with Aaron…..showing kindness and even delight on the unique way that Aaron interacted with them.

 

Aaron quickly set up house at John and Jeanie’s when we arrived in Princeton.  We had barely said hello before he was deciding where he would perch himself and his DVD player, looking for an outlet and not at all concerned about rearranging furniture or grabbing a chair on which to place his DVD player in front of him.  He did the same thing at his Aunt Sandra’s when we got to Bryson City on Tuesday.  Never mind unimportant hugs or pleasantries.  The most necessary business was to get himself situated and comfortable.  Hellos and hugs and small talk was for the rest of us, after we helped him line up his little corner of the world just right. 

 

Aaron really did very well in so many ways on this trip.  Of course, he had times of frustration when he didn’t want to go somewhere that we went…..or he wanted to be on my tablet looking up GI Joe videos instead of going to see friends….or he was a little tired of seeing too much pretty scenery.  We had to work a few times to try to derail him from the track of frustration that he was on for the moment without becoming totally frustrated ourselves.  Then there were his loud noises which were new to many in the family.  He sure can make people jump! 

But there were very many moments to treasure, far more than the ones that we would rather forget.  He sat in our vehicle for over five hours while we went through Mom’s storage unit, watching Looney Tunes DVDs and making tons of crazy noises.  Like Mary Beth said, he was our sound effects while we worked.  I just wonder what the family down from us thought as they worked on their unit.  He hugged family and friends, he talked all of our ears off about aliens and other interests, he kept up a weird schedule, he slept in different beds, and he tolerated hours of driving. 

Here are more pictures of some of the things that were very special during this trip.

He found a fun bug at the West Virginia rest stop.
 

He was happy to finally be in West Virginia.

 

And happy to also go to North Carolina.

 

We had a delightful visit with Leo.

 

We ate at Naber’s……TWICE!!  Look at the view right there!

 

He sang for Aunt Sandra.

 

We went walking up Deep Creek.

 

And dad helped him find some little Deep Creek rocks……

 

while Aunt Sandra found a HUGE leaf!!

 

He was happy to go see Pam and Russ after a stubborn spell that day……

 

and pet and feed the horses in the pasture beside their house!

 

 
Those are just a few of the wonderful times we had on this special trip.  On the day we left to return to Kansas, Aaron had a mild seizure while still in bed early that morning.  He had another big seizure in the car on the interstate, and a larger one that night in the hotel.  He thankfully had just gotten out of the shower before that last seizure, and was sitting up in bed reading.  He hit his head really hard on the headboard as the seizure jerked him backwards, and then on the nightstand as it threw him sideways, but thankfully he was fine.  God was good to protect him, and to let him have a full week of fun and family before that seizure hit. 

It was a reminder of how fragile he really is in some ways, physically, and of how tough he is as he rebounds despite a sore head and a bitten tongue and not being able to taste food the next morning.  It jerks Gary and I back to reality, but also causes us to be thankful for every good day and special memory during our family trip. 

It may not always be easy to have Aaron come along, but it’s always worthwhile to have him along with us…..not just on this trip, but along this journey of life together with our special son. 

 

 

 

 

 

 

 

 

 

 

Day One……Day Two…..Day Three…..

When Aaron was hospitalized in June, the biggest concern that his doctors had was his very low sodium count.  We knew he also had something else going on because of his high fever.  His pneumonia didn’t show on X-rays for a couple days, but the sodium was a huge problem because it can affect the heart.  There are at least three reasons why his sodium may have dipped so low.  It could be one of his seizure drugs that he’s been taking for years; it may be a syndrome related to the pituitary gland; or it could be that Aaron drinks too much water.  Too many fluids can wash sodium and other nutrients out of the body at too great a rate.

Dr. Broberg, Aaron’s family practice doctor at McConnell Air Force Base, has been seeing Aaron since his hospital stay.  He recently checked Aaron’s sodium levels again, twice, and found that they are once more going down to an unacceptable level.  Therefore, he wants us to limit Aaron’s fluid intake to about a liter and a half a day.  Now, this sounds like Aaron can still drink a lot but when you consider coffee in the mornings and even the water he drinks with his pills twice a day, there isn’t a whole lot left over for Aaron to just casually drink during the rest of the day.  At least it’s not a lot for Aaron, who does love his water.

Aaron usually has three cups of coffee in the morning.  They’re not always full cups, but still there are three cups.  Aaron’s a creature of routine, remember, so if he has had three cups of coffee in the past then he wants three cups of coffee in the present.  Three.  Not two.  And definitely not one. 

Aaron also has two water bottles that he keeps in the frig.  Each bottle holds 23.6 ounces.  I know that now, because I had to calculate his intake on Thursday, our first full day of our new routine.  Aaron loves taking those two water bottles to his room and drinking the water while he watches a movie or plays a game.  Two.  Not one.  Definitely not one.

Day Number One: On Thursday morning, I began calculating ounces of fluid before Aaron got out of bed.  I decided to give him 10 ounces of coffee, which isn’t much.  So I split it between two coffee cups.  It really didn’t look like much at that point as I stared down at the halfway filled cups.  Well, maybe Aaron wouldn’t notice, I thought.  Silly me. Then I allowed him 5 ounces of water to drink with his pills, and that would be his morning allowance. 

I didn’t phrase it that way with Aaron.  In fact, I didn’t say anything about restrictions or allowances when Aaron plodded into the kitchen that morning.  I just poured his coffee as he stared at the empty carafe when I was finished.  I poured his pill water, which he usually does, as he continued to stare.  He was doing his own calculations, I just knew it, and it didn’t have anything to do with wanting to comply with doctor’s orders.  It had everything to do with restrictions, even though I didn’t say that ugly word.  It had everything to do with his routine, as well.

I tried to be as normal as possible and as happy as could be without being weird, as Aaron would call me if he sensed that I was being fake.  Finally, he said something about only two cups of coffee.  Oh boy. 

“Remember that you need to be careful about how much you drink?” I reminded him.  “And isn’t it great that you can still have coffee?  Some people can’t drink coffee at ALL!” 

He was pondering that dismal outlook as I left his room, where I had put his two cups beside his desk……in the place where there are usually three cups.  Two cups.  Not three.

The rest of the morning was without incident.  I let our Great Dane ride with us as I took Aaron to Paradigm.  Aaron loves that and I wanted Aaron to love as much as he could on this day of the beginning of restrictions.  Aaron was happy for me to run into Paradigm and discuss the fluid situation with Barb, telling her of the need to monitor Aaron’s intake.  She saw the difficulty in this prospect for Aaron, though she didn’t say a lot about that element.  The looks between us spoke volumes. 

When Aaron got home that day, he told me that he didn’t drink anything while at Paradigm.  I told him that he didn’t have to go without water all day.  He took that to heart as he later reached into the refrigerator for his two water bottles, which I should have replaced with smaller bottles earlier.  As he started to take the two bottles, I told him to take one bottle instead.  One.  Not two.

Furthermore, I told him to drink half of the bottle now and then save the other half until later.  Surprisingly, he agreed.  He was fine for the remainder of the evening, even joking about drinking his other water bottle but not touching it at all.  So far, so good.

Day Number Two:  I felt confident on Friday since Aaron had done so well the day before.  He was handling this restrictive life better than expected.  Yet I knew, too, that his attitude could quickly change.  This was confirmed when Aaron came downstairs after he got out of bed.  He sat across from me at the kitchen table, still sleepy and unsmiling despite my chipper, “Good morning, Aaron!”

“I’m just beginning to hate that doctor,” he said without emotion.  “I want my two bottles of water.”

Well, he laid it out on the table first thing.  Now to deal with it.  God said to ask for wisdom when we need it, so I did.  Not out loud.  Aaron would have thought I was weird.

“Do I have a doctor appointment?” he asked.  He was wondering about the next week.  I told him that he did have a doctor visit scheduled. 

“Is it that SODIUM doctor?” he asked with emphasis.  I told him that it was not Dr. Broberg, careful to use his name, but was with his seizure doctor.  I gently tried to clear Dr. Broberg of all sodium charges, explaining Aaron’s situation and history, but of course this all meant little to Aaron.  He was simply dreading another long day of drinking only one water bottle.  One.  Not two.

He watched me as I got up from the table and starting getting out his coffee cups.  “Can I have three cups of coffee?” he asked.  “Those two went by fast!” he added.

Oh Aaron, you do make me smile even in the midst of your frustration.  So I did give him three cups of coffee, which exceeded my desired liquid limit for him…..but the cups were only about half full.  He noticed this, of course, and I reminded him that he often has half full cups of coffee since he is often shaky.  He accepted that explanation, and I carried his half full cups of coffee up to his room, where I set them in their usual place.  Three cups.  Not two.  Aaron was moderately happy, but still suspicious.
 

Later, as I was drying my hair, Aaron strode in the bathroom.  He had a smile, and now it was my turn to be suspicious.  My instincts were correct.

“Mom!” he said with excitement.  “I drank my TWO bottles of water!”

“You didn’t,” I responded.

“Yes, I did!” he replied.  “But I drank half and then half and then half.”

I just stood there.  I wanted to laugh and I wanted to lecture, but I was truly relishing his method.  He remembered that I had instructed him the day before to drink half of his water bottle.  So on this morning, he decided that referencing those “halves” would soften the blow of his disobedience.  Pretty clever, actually.  I wanted to tell him that for two water bottles, he really should have added another half to his list.  But I decided that this wasn’t the time for a math lesson.

Sure enough, in his room stood his two water bottles.  Totally empty.  Two.  Not one.  And not one half.
 

Sigh. 

Today I replaced his 23.6 ounce water bottles with an 8 ounce bottle.  Such a little bitty bottle compared to the others!  You should have seen his face when I showed it to him!  Half amusement and half surprise and half disgust.  I guess that’s one too many halves for just one bottle.  One.  Not two.

 
Dr. Broberg had no idea of the complications this fluid restriction would cause in Aaron’s life, and therefore ours as well.  How could he?  Living with autism is complex enough on a “normal” day.  Throw in restrictions and changes and routine disruptions, and you have a mess on your hands. 

Day Number Three:  Today is Saturday and Aaron is happy.  We hope that this happiness lasts.  He does have three cups of coffee, partially full.  Three.  Not two.  He has one little water bottle.  One.  Not two. 

And I do have hope that we can make this work.  I have hope on this day three.  I did not have much hope on day two.  Let’s pray that we can look back on this day three and see it as a successful day.  Then I will want more days like this one.

Day three.  Not day two.