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

Sexy!! Let Me Explain!

I remember well when our children were very young, and Aaron ran into the kitchen one day in our German military quarters.  He was probably in the first grade. 

“Mom!  Is ‘sex’ a bad word?” he blurted out. 

“No,” I calmly replied, though I think my heart was beating faster.  “Sex is not a bad word.”

With that, he turned and ran into the living room, where Andrea was playing.  “Andrea!” he again blurted.  “Mom said that ‘sexy’ is not a bad word!”

Wait.  How did ‘sex’ become ‘sexy?’  I just chuckled, knowing that if I made a big deal of that word then they would continue to inquire into things they didn’t need to inquire about just yet. 

Today, being a full grown man, Aaron still has that first grade mentality about that word.  THAT word!  I know that he’s seen more and heard more that perhaps has shed a little light on it, but he doesn’t seem to have what you and I would deem to be a “normal” insight into what makes the world go round…..birds and bees…..and all that “stuff.”

Remember the nightie story?  How Aaron was in the crowded aisle at Wal-Mart and held up a very revealing Valentine tiger print nightie?  I was walking ahead of him and heard him yell, “MOM!!”  When I turned around, there he stood, holding up that tiny tiger print thing.  Then he loudly said, “Mom!!  You need this!!!”

The ground didn’t open up and swallow me like I instantly hoped it would, so I am here to explain once again that Aaron didn’t have one single clue that this nightie was supposed to be sexy.  He liked it because he had never seen a tiger print nightie like that before.  Tiger print!!  How cool was that?!  And for Aaron, it ended there.  Just like I wished, for a few humiliating seconds, that my life had ended there.

For a long time now, whenever Aaron sees hugs on television, he lowers his voice and says, “Sexyyyyyy.”  He draws out that word because he knows that hugs have something to do with love.  And that love is “sexyyyy.”  It alarmed me a little at first, but I just ignore it and don’t react.  If Pat Sajak on Wheel of Fortune puts his arm around a contestant, Aaron says, “Sexyyyy.”  If a brother and sister hug, Aaron says, “Sexyyyy.”  If a man hugs his grandmother, Aaron says, “Sexyyyy.” 

And on occasion, when Gary and I hug, Aaron will say, “Sexyyyy.”  But he doesn’t say it often about us.  I wonder what that means?  When parents hug, it’s yucky?  J

There is a girl in Aaron’s day group that Aaron knew years ago.  Years ago, they didn’t get along.  And today, they still don’t get along.  Actually, they tease each other terribly and then things can get carried away…..which often means that Aaron will chase her around the room or slap her arm or something else that gets him, or both of them, in trouble. 

Apparently the other day Aaron decided that it would be funny to chase her around the room, but this time as he ran after her he was loudly saying, “Sexyyyy!  Sexyyyy!”  I’m sure this got quite a reaction, which made Aaron enjoy it all the more before staff intervened.

Now if I had a special needs daughter, and a guy that has been a huge irritant in the past was running after her yelling “Sexyyyy!”….. then I would be alarmed.  And her dad was.  He came up to the day group the next morning to talk to the staff about Aaron.  I’m so thankful that the staff understands Aaron and understands this girl and understood the whole situation.  I know how it looks to this dad, though. 

Gary and I sure wish Aaron understood all this.  We tried to explain it to him as best we could, but he still thought it was harmless fun, just like a first grader would think. 

Last night I was watching Dolly Parton’s movie of her childhood, The Coat of Many Colors.  Aaron came in the family room while it was on, watched a couple seconds of it, and hurried on his way.  I asked him if he wanted to watch it and he emphatically said no.  It was too mushy and real for him, and I knew it.

“Mom?” Aaron asked this morning.  “Would you watch The Rig?”

I told him no, and he laughed.  He knows I don’t like the creature on the oil rig.  So I turned the tables.

“Aaron?” I asked.  “Would you watch Coat of Many Colors?”

“NO!!” he replied. 

“Why not?” I asked.

“It’s sexy!” he answered.

This surprised me a little, so I asked him what he meant when he said it’s sexy.

“It’s too full of love!!” he explained.

This explained so much about how Aaron perceives THAT word…..sexy.  And how he reacts to all that love being openly shown with hugs and smiles and laughter and pure joy.  You and I are warmed by those displays of love, whereas Aaron is very uncomfortable with strong emotion. 

But he thinks it’s funny to say it’s all “sexyyyy.”  That somewhat questionable word makes talking about awkward displays of normal love more tolerable to Aaron.  He has no idea how it comes across to others.  I wish the worried dad understood this. 

I really wish all those people in the Wal-Mart aisle had understood it, too!

 

Tired of Love?

Some of you have been asking about how Aaron is doing.  We don’t really know how his sodium levels are holding right now.  We need to have more blood work done to find that out.  He’s drinking less water than he used to drink, but probably still more than the doctor would want him to have.  We’re just doing the best we can do there.  Let’s just say that he does NOT take kindly to having his fluids restricted.  Some days and moments are harder than others.  Much of it depends on his mood.  Much of everything depends on his mood, actually.

One day his friend at Paradigm gave Aaron some food.  I was a little leery of this idea, so I told Aaron that he probably shouldn’t be eating food offered to him like that. 

“You’re saying I can’t have WATER, and now you’re saying I can’t have – like – FOOD?!” he exclaimed.

He lives a tough life, let me tell you.  A very tough life.

Aaron loves listening to CDs when we drive to his day group, unless he’s having a grouchy day.  Then he punishes me by saying he doesn’t want to listen to any music.  Anyway, we had listened to an instrumental CD and I guess it wasn’t his favorite.  The next day he said, “Will you get a CD where they’re singing in WORDS?”  Ok, ok.  So we I picked out an Olivia Newton John CD, one where she’s singing her old songs.  Aaron listened quietly.

Finally he said, “Mom, I noticed something.  She just sings about love.”

“Is that OK?” I asked.

“Well, it’s weird,” he answered.  “Music companies today don’t just sing about love.”

He’s right about that.

The next day we turned on the same CD, and it began where we had turned it off the day before.  Again, Aaron listened quietly for a couple minutes.  Then he flatly said, “I’m getting tired of love.”

I did laugh out loud at that one.  Come on, Aaron.  We never get tired of love! 

So to finish this, I’ll just show you some pictures of Aaron and of how he loves, and IS loved, every day.  And of how he’s funny, too!

He found a turtle down in the grass in our back yard, so Gary helped him turn it loose in the lake behind our house.  Aaron was so happy with that turtle and didn’t want to give him up, but he was happy to know that the turtle was very happy to finally go to his home. 

 

We went to see The Minions with Rosa and her mom, Louise.  Rosa asked her mom if she could go to a movie with Aaron, which was so sweet.  And the loudest I heard Rosa laugh was when they were walking out through the lobby and Rosa took a drink of her Diet Coke.  Aaron loudly said, “Is that BEER??!!”  And they laughed and laughed, while Aaron rubbed his hands together. 

 

 

Aaron went with me to get dog food at the vet.  Aaron loves getting to see the resident cat, Kato.  Patient, patient Kato. 

 

Aaron has offered to help me clean garden veggies several times.

 

And he thinks it’s so funny to always do this at least once when he eats a peach.

 

I think it’s funny that he often wears his socks with the heel part on top, no matter how many times I tell him that the gray part belongs on his heel.  He totally doesn’t care.

 

He does care about testing plants when we go into different buildings.  He showed me this piece of a leaf after we left the doctor’s office.  He now knows that his test proved that the plant is real.  Sigh.

 

We have eaten out several times on doctor visit days, which is really why Aaron goes with me on doctor visit days.  He doesn’t care at all about seeing the doctor.  It’s his restaurant of choice that fills his thoughts. 

Aaron thought it was funny to be in a huge booth, far apart.

 

One of his friends gave him a Krispie Kreme hat, so Aaron proudly wore it for a short time.  Hats are not his favorite.  Neither are donuts.  Can you believe that?

 

Life with Aaron is never dull.  And he’s always loved, even when he’s tired of love.  

And when he’s not always easy to love.  That happens, too.  I have a picture of his broken watch, but that will be for another time.

Today we sing about love.