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!

The Scar

It’s been an interesting week.  I guess that’s one word to describe it.  Other words would apply as well.  Stressful…..demanding…..concerning…..worrying.  In case you’re wondering what I’m talking about, you can read about it in the blog I wrote.  Here’s the link:


It hasn’t just involved Aaron, though.  Yet he certainly does take center stage in our lives.  All the above descriptive words certainly can, and do, apply to him.  I’m reminded of our bad beginning to our week now every time I walk into his room and see this.

“This” being the place on his wall where a picture similar to the one hanging USED to hang.  Used to hang before he yanked it off the wall in a fit of anger on Tuesday….after fits of anger on Monday.  Anyway, read my last blog, like I said.  It explains more about what happened.

Now we’re left with the ugly reminder there on his wall.  A reminder of a bad day….of hurt….of anger….of events that led up to this ugly scene and this ugly spot on his wall.

A scar. 

It would be easy to see this scar and to focus on the bad things that happened that day.  It would be easy to see this scar and to remember the awful feelings….the frustration….the anger…..the failures.  Both mine and Aaron’s, for sure. 

However, there are other parts to this whole story, too.  There are other pictures that I can choose to focus upon if I just will. 

And there it is.  It’s a matter of my will, of my choosing, as always.  I can choose to only conjure up the depressing thoughts of those two days, and of this past week generally, or I can instead choose to ponder also on the bright spots. 

On Monday evening, after Aaron’s really bad day, he suddenly asked if he could write our friend Atha a note.  He knows Atha, and he has heard us talking about her stroke.  Aaron rarely offers on his own to write anything to anyone, unless it’s what he wanted to write on a sticky note about me on Monday.  It wasn’t nice, either.

So this idea of his to send Atha a get-well note in his own words was just a very special, unexpected warm moment in the midst of a terrible time for him and for us.  That made it a double blessing.  A very needed blessing, double at that!!

I can look at the scar on Aaron’s wall and I can remember this precious note.

Also to be remembered are the prayers of friends and family….the kindness shown when aware of our need….the time spent with friends and the encouragement of warm hugs.  There was Julie, an employee at our Dillon’s, who asked me out of the blue if I needed any more one dollar bills for Aaron.  It’s not easy to get the ones when I need them, and I had forgotten in my stress that I was running low, but Julie saw me and asked me….said she thought I might be running low….said she was looking out for me.  She has no idea, though I told her a little, of how much that meant to me this week.

The scar on Aaron’s wall can remind me of all those blessings.

And there is the recliner at Dillon’s – two recliners, actually – that Aaron sat in the first time he saw them.  They were something new.  Something fun!  But probably not something that Dillon’s wants everyone to sit in and enjoy like Aaron does.  J  So the next time we saw them, in front of the registers, each chair held a huge stuffed animal.  I laughed and told Aaron that now he couldn’t sit in them since they were already occupied.  I figured that Dillon’s had a motive for putting those animals there.

On Friday, Aaron and I were there after I picked him up from Paradigm.  We were ordering him his favorite Cheddar Pasta Salad when suddenly he took off walking briskly toward something.  I thought he was headed to the Chinese side of the deli.  He LOVES looking at the Chinese food, and having the workers ask him what he wants while he laughs and says he’s just looking.  Every time.  But on Friday, when I looked up to see him walking away, I soon saw where he was headed.

Yep.  He spied the recliner, moved to a new spot in the store.  The empty recliner….but not for long.  Look at his smile.  How could I not smile? 

I see the scar on Aaron’s wall and I see the choice I have to make.  Aaron knows he did wrong and he knows he must wait for the wall to be repaired.  I don’t need to keep hammering that home to him.  But there are some issues that sometimes need hammering into my brain as I look at his scar.

What will I allow that scar to teach me?  What will I allow that scar to do to my heart and to my spirit?  Will I use that scar to remind me of the bad, or will I use that scar to let me remember the blessings in the midst of pain and the lessons learned in the hard times?

We all have them, those ugly scars of life.  We can wallow in anger and unforgiveness….regret and guilt…..pain and sadness.

Or we can choose to do what God said and forget those things that are behind, and press forward.  I know we can’t really forget, but we can forget in the sense of clinging on to them and letting the defeating thoughts control us.  What’s done is done.  Let God handle it as you pray and trust.

And as you forgive those that have hurt you, whether they know it or not.  Like Gary said on Monday night, our relationship with Aaron is much like God’s relationship with us.  It’s one of constant sin on my part and constant forgiveness on God’s part.  How can I do less? 
I want my scars to be touch points for memories of God’s grace in my life, and then for me to extend that grace to others…..including….especially!….Aaron.

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

A Winning Moment

Aaron has had a mostly good week, which means that there were ups and downs as always.  His recent staph infection returned, so I took him to the doctor on Monday.  Now he’s on another round of antibiotics, which isn’t what we like but it’s what he must do.  Tuesday was a very happy day, but Wednesday was not a good day at his day group.  Barb called me, put the phone on speaker, and I could definitely hear the frustration in Aaron’s voice.  We all wish we knew what leads him, in his mind, to the point of no return where he simply reacts without thought of the consequences. 

He was exhausted that night, so on Thursday morning I just let him sleep.  He slept for almost twelve hours, waking up too late for me to get him to Paradigm and also make it to an appointment that morning that I had.  So later that day we enjoyed some down time together.  I took him to Great Clips for a haircut, which you know he loves, and to Dillons for another favorite….a Cheddar Pasta Salad for lunch.  We took Jackson for a walk in the beautiful warm weather, too. 

Of course Aaron found the new chairs at Dillons and had to try one out!
Aaron was in a reflective mood on Thursday, which he often is after a rough day.  He was in a giving mood as well, wanting to buy some items at the store for his friends.  I try to steer him to smaller things, like pieces of gum, instead of large items. 

“Mom?” he asked.  “Natalie bought me a gift when my birthday came out.  Can I buy her a gift when her birthday comes out?”

Can you tell how often he talks about the date that a movie is coming out?  J

As we talked later that day, Aaron told me that he wanted to write a note to three of his friends who were very good to him when he was so angry the day before.  He’s never wanted to write a note for such an occasion that I can remember.  I think he had this idea because he had just written two thank you notes for some Christmas gifts. 

I gave him some note cards that I had and he proceeded to write his notes of thanks.  They were short and sweet, which is all that Aaron sees as being necessary.  It’s the sweet part that I love, and the fact that he thought of this all on his own was extra special. 

Don’t you love how he signs his name?  Years ago when we told him to sign his name on a note, he did just that. 

Signed, Aaron.

Except look at the way he spells “signed.”  He combines the word “sigh” and “sign.”  I think that’s pretty awesome.

He took the cards with him the next morning, slipping them under his jacket as he got out of the van at Paradigm.  I could tell he might be embarrassed about them.  Sure enough, when I asked him after he got home if he gave the girls his notes, he looked sheepish.  Apparently, he chickened out and left the notes on Barb’s desk.  I don’t know if he’ll get the nerve to give the notes to them or not.  I’ll gently encourage him to do that over the weekend, but I don’t know if he will.

Some victories with Aaron are partial, or come in pieces that are spread apart.  But a victory is a victory.  To see Aaron showing thankfulness and then expressing it in writing, on his own, is a huge victory.  The winning moment may not come in the actual giving of the cards, at least not this time. 

It’s his written heart that warmed mine.

And I’ll take it.

A Fight to the Finish

I’ve written in the past about how much it means to me when someone “gets” Aaron.  You know what I mean.  It’s when a person out somewhere in a public setting reacts to Aaron in a way that makes me know they totally understand him.  Or at least partially understand him.  I don’t know that even Gary and I on some days totally “get” Aaron.  This past Friday night was an example of both. 

Aaron and I went to Subway to get our special Friday supper, as per Aaron’s request.  One of the girls who began with our order was very nice, but I could tell that she was nervous with Aaron.  She was unsure of what to say to him, and very unsure of what he was saying to her as he robustly placed his order. 

“Can I have a sub?” he bellowed, with me standing close by patting his arm in an effort to soften his tone. 

“And can I have extra cheese?” he continued bellowing.  “My Mom says I can’t have extra cheese!” he rambled on as she was just saying that he COULD have extra cheese, and so she glanced nervously at me. 

I told her to go ahead with the cheese, which caused Aaron to bend over and rub his hands together as he laughed in delight…..which caused her to attempt an uncertain smile as she placed the extra cheese on the meat, all under Aaron’s watchful eye.  I wanted to tell her that it was OK….that Aaron was loud but harmless…..but I didn’t do that with Aaron standing right there.  I just hoped my smile would convey to her what I was thinking.

Just then, the manager appeared and began helping with our order.  I remembered her and she remembered Aaron.  This girl’s mother worked with special needs and so she grew up around other Aarons.  Therefore, she was very relaxed and affirming toward Aaron. 

“What you need, Buddy?” she asked Aaron as she waited for him to complete his order.  Nothing he said or did from that point on phased her in the least.  I think the other server was as happy for her to take over as I was.  Aaron was just very happy to finish his requests, figure out the mayonnaise issue, and watch as his sandwich was wrapped and labeled. 

Yes, we deal with watching others try to understand our Aaron nearly every day.  I wanted to hug the two who were on duty at Papa Murphy’s a couple weeks earlier.  They completely engaged Aaron on his level as they made our pizzas.  Aaron stood there in total happiness as he loudly talked to them about aliens and spaceships and rubbed his hands together like crazy as they responded to him as if he was talking to them about school or sports. 

Then there was the young man behind the counter at the theater yesterday, his eyes big with uncertainty as Gary and I both exited the restrooms at the same time.  Aaron was talking to him about the Star Wars movie, I think it was, that we had just seen.  All I could focus on was the “Would you please rescue me?” look on the boy’s face as he tried to figure out what to do with Aaron.  Aaron loves a captive audience, and that boy was just that.  He looked it, too, as Aaron talked loudly – of course!- and rubbed his hands together and laughed.  We tried to quiet Aaron and lead him away but Aaron had more to say.  As we finally left, I laughed and I thanked the shocked young man.  I really wanted to walk back to him and say, “You have just encountered the amazing world of autism!”  But I knew that Aaron would follow me and pick up his story where he had left off, so I left well enough alone as we walked to the van, Aaron talking all the way…..of course.

All of these are mostly “Ha-Ha” funny moments.  They may be embarrassing to us at times, or frustrating, but they are not usually awful.  Those more disturbing moments happen at his day group and occasionally at home.  That was also the case on Friday night.  We went from hugs when Aaron came home from his day group to the joy of ordering and eating subs to the downward spiral of Aaron’s cascading emotions.

It all started with me realizing that Aaron wasn’t telling me the truth about his rough day at Paradigm.  I made an off handed comment that hurt Aaron’s feelings, so after we watched Wheel of Fortune he turned to me and had “that” look on his face and in his eyes.  I knew then that he had started down that track of frustration.  Time proved that evening that Aaron wasn’t going to be easily derailed.  His emotions were in a turmoil, as were ours.  Yet if we escalated, it would only serve to further escalate Aaron, which is the last thing that needed to happen.  He escalates very well on his own, thank you.  Gary and I tried to exercise firmness with calmness.  Just when we hoped that Aaron had calmed, though, we would soon hear his heavy steps coming downstairs to engage us once again in the battle that was going on in his head.  He was almost manic in his laughter and in his efforts to unsettle us.  It truly is amazing to see, but not amazing in a funny way.

It’s the other side of Aaron that we don’t see that often at home anymore.  It’s him in a fight to express himself and voice his hurt over his own actions, or over ours.  But he simply cannot tell us with calm and rational words what it is that is bothering him.  Therefore, he chooses something that he knows will either alarm or frustrate us, and he will go off on it over and over again.  Just when we think that our words of great wisdom have reached into Aaron’s head, he starts all over again on that same issue and our heads just bow down in defeat. 

I sat in Aaron’s bedroom with him late that night.  He sat on his bed, legs dangling, trying to express himself and his emotions but clearly unable to do so in the way you and I would.  But he was winding down, I could tell.  I just needed to wait patiently, listen closely, and pray silently.  I literally bowed my head in prayer as Aaron talked.  I knew he saw me but he never asked what I was doing.  He may have thought Mom was falling asleep.  After all, it was after 11:30….way past both our bedtimes! 

At last he said he was going to bed.  I watched as he pulled back his covers and then began arranging his snake, skunk, and frog in perfect order.  I wanted to rush over and yank the covers up over Mr. Snake as Aaron worked and worked and worked to turn his lower skinny stuffed body just the right way.  But I knew that one wrong move could open up Aaron’s emotions again, so I just stood and wearily watched.  Finally all was well with the stuffed animals and the pulled up covers. 

I asked Aaron if he was reading before he went to sleep.

“No,” he said with no emotion.  “It’s 11:47.”

I was relieved.

“Mom?” he asked.  “’Guess what?”

And I knew he had nothing to say.  He does this when he wants us to stay with him.  He asks, “Guess what?” and then tries hard to think of something to say.

“What?” I answered.

“I’m wearing my watch lower,” he said as he pulled his shirt sleeve up. 

Maybe it was a few centimeters lower, but it sure was hard to see the difference.

“Mom?”  he asked again.  “Guess what?”

“What?” I repeated

“When Independence Day Resurgence comes out, do you think the theaters will be crowded?”

Sigh.

“I don’t know, Aaron.  We’ll just wait and see,” I replied.

“Mom!  Look at this!”

And at 11:49 I was looking at the back of the original Independence Day movie box and talking about the plasma ray coming down from the spaceship.

Oh dear.  Would this night ever end?

But if finally did, only after Aaron went up and down the steps several times to tell Gary about plasma rays and new Independence Day movie news and to say good night once again. 

Earlier during the evening, when Aaron was working through his anger, he began feeling badly about his actions.  He came to me in the kitchen and had something in his hand he wanted me to take.  I held out my hand, and Aaron gave me some of his Mike and Ikes.  They were sticky and I’m sure covered in multiple germs, but he stood there waiting for me to eat them.  So I did, praying silently for God to please strengthen my immune system at that moment. 

“I wanted to give you these Mike and Ikes since I’m sorry,” he explained as he waited for me to enjoy them.  So what could I do but eat them? 

And what can we do but try our best to do what we hope others will do with Aaron.  We appreciate the understanding that strangers show to Aaron.  Can we do less?  Understanding what makes him tick, what makes him upset, what it is he is really trying to say when he is so upset……this is all part of figuring him out. 

It’s “getting Aaron.”  Not condoning behaviors, which we don’t, but understanding the behaviors as much as a parent of a child with asthma understands an asthma attack.  I thought of all this when I was sitting in Aaron’s room with him, watching him come to the end of the fight, and realizing how vital it is that I understand.

It means as much to Aaron for us to understand as it does to us for others to understand.  Complicated.  But so very necessary. 

Aaron?  Guess what? 

We’ll keep trying to understand. 

And I should keep a box of Mike and Ikes stashed somewhere for good measure.

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! 

  

The Nail Trim

I remember climbing on my Daddy’s lap when I was a little girl.  He was sitting in his chair near the fireplace, with his shelves of books on one side and his end table on the other.  His newspaper was on the end table where he could eventually read it at the end of a busy, tiring day on the railroad.  His Bible was also laying there within easy reach.  He read his Bible often as he sat in his chair. He was always ready and willing to listen to my questions about what the Bible said about this and that, especially as I got older.

 
But when I was little and would climb on his lap, I remember the gentleness that he showed.  In the early years he smelled of pipe tobacco and smoke…..that subtle odor that comforted me.  I can still see him emptying his pipe of the old tobacco and then refilling it with fresh, tapping it gently and pressing the tobacco down just right.  I can hear the sound of the pipe stem on his teeth and see the soft, swirling smoke around his head at the end of the day as he relaxed.

Dad was never too tired to listen to us kids as we talked to him.  He was patient and kind, and so wise.  Sometimes when I would climb up on his lap, he would read me a book.  Sometimes we would just snuggle.  And at other times, he would take my hands and check my nails.  If they were too long, he would ever so carefully trim each nail.  I sat very still, watching him take each of my fingers and cut the nail just right.  Then off I would hop and go on my way, not giving much thought to that simple deed that Dad performed. 

Until years later…..many years later.  The tables had turned, as they so often do, and I and my family had become the caregivers.  Dad was in his last month of life as the cancer he had fought for eight years was winning the battle.  I had been able to go home to help Jan and John as they cared for him and Mom.  It was a month of many cherished memories that fill my heart every day, especially during this Christmas season.  It was December when Dad died.  It was December and Christmas that he and Mom loved so much.

One day I rolled Dad in his wheelchair into the living room so that he could enjoy the pretty Christmas tree.  I helped him get onto the couch, his thin body so frail and weak.  Then I sat beside him and snuggled close to his bony side.  Words were few because it took too much energy for him to lift his head and talk.  But he still smiled….that gentle, kind smile that was his signature. 

As we sat there in the soft glow of the Christmas lights, I looked down at his fragile hands resting on his lap.  Hands that had worked hard, disciplined well, warmly hugged, and folded in prayer.  And I saw that his nails were so long.  How had we let them get in that shape?  So I looked in his tired face and I asked him if he would like me to trim his nails.  He slowly lifted his bowed head and gave me that smile as he said yes ever so softly. 

I got some clippers and a nail file, and I set to work on his nails.  I was afraid of hurting him so I worked very carefully, taking each finger and slowly trimming and filing.  He was very still and quiet as I worked.  Finally I was done.  He looked down at his hands and smiled again, and then slowly looked me in the eyes as he thanked me.  For days afterward, he talked about how good it felt to have his nails trimmed as he thanked me over and over. 

And just as when I was a little girl, the significance of that act didn’t hit me until later.  Dad showed me such love in the simple deed of trimming my nails when I was young.  Now it was my turn to show him the same love in the simple deed of doing the same for him in his weakened state.  His strength was mine when I needed him.  My strength was his when he, many years later, needed me.

And it was the love and guidance of Dad’s hands that led me to be there for him at the end of his life.  He raised me and my brother and sisters well.  He loved us deeply, worked hard for us, and led us to know and love the Lord. 

 
It seems like yesterday that I hopped off of his lap after he trimmed my nails, and ended up beside him on his couch trimming his nails beside the Christmas tree.  Now his and Mom’s memorial ornaments hang on my tree, and all I have are memories.  
 
But someday I’ll take his hand again in heaven, and Mom’s as well, and see them both strong and whole once more.