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:

 http://hesaidwhatks.blogspot.com/2016/01/a-little-understanding-please.html

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 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.

What Happened to Happy?

It’s very interesting, as we live this life with Aaron, how we see all the ups and downs that go along with autism and Epilepsy and developmental delays.  We not only see the ups and downs, but we deeply experience their effects on him personally and on us as well.  Certainly anything that affects Aaron impacts Gary and I, too, and what a ride it can be!

Aaron really wants to enjoy happiness, but he wants it on his terms.  Sometimes that’s just not possible.  There are occasions where Gary and I walk a fine line as we attempt to provide a happy environment for Aaron without giving in to his every whim.  It’s like being on a boat.  We can be trolling along, happy and peaceful, and then all of a sudden we run upon choppy seas that threaten to overturn us.  Some days we can see the storm coming with Aaron as we read his mood.  Other days the storm swirls in out of the blue, unexpected, catching us off guard and then demanding all of our skills that we hoped we’ve learned over the years of parenting Aaron. 

This past Sunday night, Aaron and I were in the kitchen after playing Skip-Bo.  He was thinking of the next day as he said, “Mom, tomorrow’s Paradigm.  Let’s not let me go!”

I laughed at the funny way he phrased his comment, and then he laughed, and all was well.  The next day he was more adamant about not wanting to go.  Aaron loves Paradigm, but his dream life would be to stay home every day playing on the computer or watching movies.  That’s not going to happen and he knows it, but he still tries to test those waters.  He did go to Paradigm, but he did slam the van door and so I prayed as I drove away that somehow he would have a good day.  Barb said he was VERY grouchy when he came in but then settled down and had a really great day.  Yay!  Not yay for VERY grouchy, but yay that the rest of the day was great. 

Aaron pushed my buttons when he got home, blaming me for ruining his dream life and other ills as well.  Supper didn’t suit him, so Gary and I actually enjoyed a nice meal alone with uninterrupted conversation.  May as well see the silver lining in the cloud.

Later, Aaron and I had a talk, where I got firm and Aaron saw the light.  He was nice the rest of the evening…..almost.  Then came bedtime.  Why do so many things happen at bedtime?!  For instance, a couple weeks ago it was time for bed and Aaron knew it was time for bed.  If anyone knows anything about time, it’s Aaron!  But he was watching a movie, not wanting to quit until he was at some magic point, and so I did all the bedtime chores I do for him….and still he sat at his desk, engrossed in the movie. 

So I said goodnight, with some aggravation in my voice, and went to my bedroom.  I locked the door because I figured I would be followed.  Sure enough, I soon heard Aaron’s heavy steps coming up the hall.  He knocked loudly on the bedroom door and then said, “Mom!  I want to say goodnight in my room!”  You see, I hadn’t said our goodnights in the proper Aaron way.  I sighed and opened the door, where Aaron repeated what he had said about saying goodnight in his room.

“Come on!” he commanded as he walked briskly up the hall toward his room, before I could object.  But I did.  “Aaron,” I protested.  “I already said goodnight.”

“But you weren’t happy,” he explained.  How perceptive, I thought.  So, very tired and just wanting sleep, I followed him to his room.  He went into his room, turned toward me, and reached out for a hug.  I complied with an obligatory hug, not a heartfelt one.  I was still aggravated….and Aaron knew it.  I even said goodnight, but Aaron stared hard at me and then said, “You’re still not happy!”

So out went his arms again and this time I had to smile, more inside than out, as I gave him another hug.  I tried to make this hug more sincere, and I even did smile an outside smile as he stared at me again.

“Are you happy?” he cautiously asked.  And I assured him that I was happy, so that he would be happy, and I finally was released to go to bed…..at last!  His insistence on going to bed happy really was the right thing to do, much as I didn’t want to participate at that point, and his perceptions were also pretty amazing. 

Back to Monday night.  On Monday night I found myself wishing with all my might that Aaron wanted to be happy.  You see, Gary and I are getting ready to paint Aaron’s bedroom.  Gary has patched Aaron’s walls, but on Monday night Aaron wanted to show Gary a huge mark on his otherwise repaired wall.  Gary was shocked to see the mark.  We both think that Aaron made that mark on Monday morning when he was mad at me, but Aaron wouldn’t own up to that at all.  In fact, when Gary asked Aaron when he had made the gouge in the wall, Aaron hit the roof.  Boy, did he ever react!!

Aaron accused Gary of accusing him of making the mark.  “Well,” Gary replied, “who else could have made it?”  Aaron was beyond furious.  He became livid.  Gary and I both ended up in Aaron’s room, where Aaron erupted over and over.  He was in a full meltdown, and it wasn’t pretty.  It’s actually very amazing to see the progression of his thought processes when he’s out of control like that.  I’m just thankful that we don’t see this scene very often.  He never owned up to making the mark, but he sure did fling out all sorts of insults and angry comments.  I told Gary to go on to bed, and I sat with Aaron for awhile.  He was mad at me, too, at this point.  He watched a movie for a few minutes and then commanded me to leave his room. 

What happened to happy?  It was totally gone at that point!  I went to our bedroom, where Aaron followed and barged in, yelling some more and refusing to leave.  He did finally leave and he did stay in his room.  He went to bed around 12:30.  I’m sure he wrote down the precise time in his journal. 

He went to Paradigm the next morning.  I praised him for his maturity.  When he returned home that afternoon, I could tell that he was still struggling with some anger.  Yet when Gary got home, Aaron was fine.  We had supper and a pleasant evening, which was so welcome after the awful anger of the night before.  Aaron asked me to tell Gary what I had told him about being mature, so I told Gary how mature Aaron was to go to Paradigm without a fight.  Aaron stood there rubbing his hands together as I praised him to Gary, so happy at those words…..at last!

Yesterday after supper, Gary and Aaron took a walk out in our back yard with Jackson.  I looked outside and felt warmed by the sight of the two of them walking together.  What a picture of reconciliation!  The restoring of relationship is something we do fairly often with Aaron.  We must….because we love him and because it’s right.  All of us have these family moments and life moments where we have to come together again with those who have angered or hurt us.   Gary and I have to be the adults in these situations with Aaron.

But I guess that’s not always true, is it?  Didn’t I just tell about how Aaron came to get me when he knew I wasn’t happy?  How he insisted on being happy before we went to bed?  So I know that there are times when Aaron can and does get it right…..and I have it wrong. 

Our boat is once again sailing calmly.  He knows that tomorrow is Friday and that I’ve agreed with his request of a Papa Murphy’s pizza for supper.  Yet I know that the winds can change direction at any time, and another storm can blow upon us.  I know that I will once again, at some point, be asking what happened to happy.  Let’s pray that happy hugs are all it takes next time to bring the ship upright and make it steady again.    

Let’s hear it for happy!

And hugs!  Lots of happy hugs!

Spilled Water

Today Aaron had a dentist appointment to have his teeth cleaned.  He was happy about it, not because he likes having his teeth cleaned but because he knows that afterwards it means we hit the Pizza Hut buffet down the road from the dentist’s office.  Aaron and I happily walked into Pizza Hut, only to find one very busy server working hard to keep up with a rapidly filling restaurant.

We waited a long time while this poor overworked server was on the phone before she was able to break free.  She told us just to go ahead and pick a seat, but asked us first what we would like to drink.  Aaron quickly told her that he wanted water WITH lemon…..because Holly, who had just taken care of him during our trip to Houston, put lemon in her water. 

“Mom!” Aaron had said to me earlier this morning.  “Do you know what Holly puts in her water?”  Then he proceeded to tell me how Holly put lemon in her water.  “Can I put lemon in my water when we eat at Pizza Hut?” he asked.  And I told him that he could.

So when the busy server asked for our drink order before we seated ourselves, Aaron jumped on it and made sure that his water would have a piece of lemon.  When we sat down, and our waters came, Aaron said, “Holly squished her lemon and poured the juice out.  Will you do that to mine?”  So I squished his lemon and he watched me pour the lemon juice out into his water.  He was happy.

We walked over to the buffet line, where the salad in the large bowl at the salad bar was nearly gone, and there was no pizza left on the pizza side.  Poor busy server!  We were able to fix small salads…..Aaron’s with way too much dressing before I could wrangle the dressing ladle from him.  Soon we were able to get some pizza, too, and we sat there eating and chatting.

I looked up at one point to see that five Amish young women had come in and were waiting to be seated.  With them they had two small children.  They were such refreshing and lovely young women, I thought.  I watched as others stared at them, and I hoped I wasn’t doing the same.  It must be hard sometimes to always stand out as being different.  Finally they were shown to the seats right behind Aaron and me.  I pretty well knew what would happen when they walked past us. 

“Mom,” Aaron said.  “They have on hats.” 

“Yes,” I answered.  “That’s part of their religious beliefs.  And don’t stare or point.”

“I was watching her,” he continued.  “You’d say I was staring?”

Again I just cautioned Aaron not to boldly stare, so he continued eating.  Finally, we got up for one more trip to the buffet, and as Aaron was getting out of his side of the booth his arm knocked over his nearly full glass of water.  His water with all the squished out lemon juice went all over the table and down onto my side of the booth.  Thankfully I had already stood up, so I didn’t get wet.

 

Aaron apologized profusely, so I told him it was fine…..and told him not to be so loud…..and he reached his arm up to me.  I leaned down as he still sat there and he gave me a big hug.  The older man in the booth beside us stared even more than he had already been staring.  And as I turned to see what kind of mess we had, I made eye contact with one of the young Amish women.  She looked quickly away, but I knew she was watching us and probably wondering.  I knew that I felt the way she must often feel.

For the rest of our meal, I sat with Aaron on his dry side of the booth.  Our poor harried server never did make it over to clean up the mess, and that was fine.  I felt really sorry for her.  Besides, this gave Aaron and me a chance to sit close together.  He leaned his head on my shoulder, so happy that Mom wasn’t angry and that all was well.  I knew he felt so badly about what had happened, but I assured him that it was fine. 

He was very happy that I offered him my water, but I took my straw out so he wouldn’t get my cold.  He quickly grabbed his straw that was laying on the table in the mess of spilled water, ice, and soggy napkins.  He was content as he ate his pizza, not minding that the server never made it over to clean our table.  While he ate, he sang songs from Phantom of the Opera…..quietly……and he drank every drop of my water.

 

I was now facing the Amish women as I sat beside Aaron.  One of the young women that was facing me was pregnant.  I looked up at one point and our eyes met, and we both smiled at each other.  I wondered what she was thinking.  I wondered if she wondered about Aaron.  Wondered if she wondered what my life is like, just the way I wonder what her life is like. 

Aaron and I finally went up to the register to pay.  I had to run after Aaron at one point because he walked rapidly over to the buffet.  He was just ready to reach in with his bare fingers and grab some bread sticks for the road before I was able to stop him.  Oh Aaron!  You know better! 

Aaron and his messes that he makes!  In the short time that we’ve been home from Houston, we’ve had several of those messes to deal with and try to correct.  They may be physical……like me on my knees cleaning up certain spills and missed aims, if you know what I mean.  Or they may be messes created by his behaviors.

That’s why I was on the phone this morning with Bryan, one of the Paradigm staff that takes Aaron with him to work on houses.  Aaron loves working with Bryan, but on Monday Aaron had a meltdown at Paradigm and was mean to Bryan.  I wondered what Bryan would say when we talked, but he was amazing.  He really loves Aaron.   He really understands Aaron, as much as any of us can understand him.  And he knows that all he can do…..all any of us can do…..is clean up the mess and move forward.

Sometimes we have to sit in the mess awhile, like Aaron and I today in our watered down booth.  Sometimes there are no quick fixes or easy solutions.  Aaron sees the mess and the havoc it creates, but it’s important for him to know that he is still loved in the midst of it.  He is still cared for despite it all.  He felt bad about the water today, and he usually feels badly about the outbursts he has.  Yet he can’t always stop it when he’s upset, any more than he could stop the water that spilled so suddenly today. 

The damage is done, but I can still sit closely enough for him to put his head on my shoulder, and know that he is forgiven and loved.    Believe me, sometimes I want to run to another room….another house….another state!  But that’s not the solution, for Aaron or for me. 

We stay in it because we are all Aaron has.  God gave him to us for a reason, messes and all.  And we do love that big, crazy guy. 

Spilled water and all.

The Slow Train

Imagine that every day when you drive away from your home to run errands or to go to work, you must cross a train track.  Imagine that every single time you come to that train track, there is a train on it, traveling ever so slowly.  You must wait on that train to pass before you can cross the track and continue on your way.  Then when you drive home later, the same thing happens.  Any time you try to cross that train track, no matter the time of day or how many times you have to drive over that track in a day, the same thing happens.  Over and over again, you must stop and wait on that train to slowly pass.  You begin to dread it and you find yourself very irritated about this slow moving train.  Some days you handle it better than others, but eventually on a bad day, you find yourself saying, “I hate that train!!” 

 

This is how I sometimes feel about autism.  Not Aaron, mind you…..but autism itself.  I love Aaron so much.  I love how unique he is…..how he views the world while opening up his view to me……all the many, many lessons he has taught me over the years as I have lived with him….all the times that he has made me laugh at the funny things he says. 

But some days it’s like running into that slow train every day.  On those days, if I’m tired or troubled, it can be especially difficult to remain upbeat or to see the fun in Aaron’s way of living in his world.  That’s because his way of living in his world usually involves me to some degree, and often that involvement causes me to stop what I’m doing and do what he wants…..or demands.  Just like that slow train that impedes my day, at times Aaron’s rigid routine makes me stop what I am doing while I meet his needs.

For instance, his bedtime routine at night.  At night, when I am more tired.  He absolutely does not want to go to his room to get things situated unless I go with him.  He wants me to help get his blanket on the bed just right, close his blinds, set his clothes out for the next day, and say goodnight in his room near his door…..not out in the hall or on the right side of his bed, but in his room near his door on the left side of the bed. 

If I am on the computer he will come to stand behind me and he will hover.  He is waiting for me to come up to his room for the bedtime ritual.  If I tell him to go on and brush his teeth and take his pills, he will do that and then return to stand behind me and hover some more.  I just know that he will not go to bed unless I stop what I am doing and go with him.  There’s that slow train, every day the same.

Or getting his coffee in the mornings.  When Aaron comes down to the kitchen, he wants his coffee.  I don’t mind that at all, unless he’s demanding.  But he will linger as he waits for the coffee to finish perking, if I’m making fresh, and he will linger as he waits for me to pour the coffee.  And he really wants me to carry it upstairs right away.  The other morning he was hovering, wanting me to pour his coffee.  I poured his cups of coffee and went back to what I was doing.  I always carry his coffee up to his room because he is so shaky that he spills it.  So he stood there, hovering, waiting for me to carry his coffee upstairs. 

“Are you carrying my coffee to my room?” he asked.  I told him that I would get it in a minute.  He walked in the living room, but soon was back in the kitchen…..hovering again. 

“Are you getting my coffee?” he asked again.  So I told him to go on upstairs and take his shower, and I would bring his coffee up while he showered.  This didn’t suit him at all. 

“Mom!” he said with impatience.  “Aren’t you getting my coffee?”  He started walking away, but I knew we weren’t done….and I knew I would need to carry his coffee upstairs now.

This made me very irritated on this particular morning.  I rinsed my soapy hands off under the running water at the sink.  And thinking he couldn’t hear me, I muttered, “I hate autism!”

But Aaron did hear me.  He heard my careless remark, and he did not like it…..not one bit.  Since that morning I have had to do some damage control.  I’ve explained to Aaron several times what I meant when I said those words, assuring him that I did not mean that I hate him.  I reminded him that Granddaddy died of cancer, and that I hate cancer.  I told him that Grandmother has Alzheimer’s and that I hate Alzheimer’s.  I’ve explained that I hate his seizures.

Explaining to him why I sometimes hate his autism has been a little trickier.  I’ve talked to Aaron about how sometimes life for him is very stressful because of his autism and how it makes some situations difficult for him to handle.  Aaron really doesn’t want to go into great detail about those things, though.  And I don’t either, because I don’t want him to feel that I think his life is bad or hard.  I wish I could take back that moment, and that I hadn’t said those words in my frustration.  Yet on the other hand, at least it’s opened up some conversation between us and enabled me to talk openly to him in a way I don’t normally do. 

Aaron and I were watching a movie on Saturday night, one that he had looked forward to watching with me.  Suddenly he turned to me and said that he was having a dream, and then went into a big seizure.  Gary and I stayed with him, and when he was able we went upstairs to his room so he could go to bed.  The movie would wait until another night.  I got his bed covers all ready while he brushed his teeth.  His head was hurting from the seizure, and he was slow and weak.

Despite how he felt, though, he went about his bedtime routine as he normally does.  I watched him carefully place his stuffed snake and skunk in the bed, under the covers, just right…..and then pull the covers up just to a certain point.  I watched him open his notebook and record the time he was going to bed, so meticulously.  I watched him make sure that his back scratcher and other items were on his desk where they belong….that his clock light was dimmed…..that his glasses were just where he always leaves them beside his watch that he was sure to remove from his arm. 

His routines are his life.  Even when he feels terrible after a big seizure, he still maintains his definition of normalcy and routine.  I do admire him for that.  He’s so determined despite how his body works against him.  So strong even though he’s weak at times like this. 

Yes, I do hate autism and how it has altered Aaron’s life in huge ways.  It has also altered my life in huge ways.  But I do need to be careful not to let my anger at autism be a cause for hurting Aaron’s heart.  I think he understands my statement from the other morning.  I still wish I hadn’t said it.  Lesson learned, I hope. 

That train will be on that track every single day.  I can’t change its path or its inconvenience in my life.  But I can change my attitude, and when I feel like muttering useless words I need to pray instead……count to 10 or to 100……go sit in the flower bed with Aaron for some mulch therapy……clap a few times like Aaron does to relieve my tension…..whistle or whoop out loud with Aaron…..

Poor Gary.  I don’t know if he could handle two of us in the house.