What Wasn’t and What Was and What Should Have Been


We’ve had a few interesting days with Aaron.  I think the older that Aaron becomes, the more evident his autism behaviors are.  And boy, we’ve seen some good ones recently!  I’m using “good” in a loose sense.   I’ve never been the kind of mom that tries to blame my child’s poor behavior on anything other than his willful disobedience.  “Yes, I know my child destroyed your flower bed, but he’s just tired.  He didn’t have his nap today.”  Nope, that was not me.  But with Aaron, we see more clearly with each year that his behaviors are indeed the result of something that we sometimes barely understand and can rarely control.  Of course, some things he does are very funny or amazing…..but not always.  
Take the fishing trip that wasn’t.  Rosie’s mom had told me about Fishing Without Boundaries several weeks ago, but I dismissed it as something that Aaron wouldn’t want to do.  He doesn’t like to fish…..he doesn’t like being out in the heat all day…..he doesn’t like crowds for long periods…..he doesn’t like his routine messed up.  I’m not being negative.  I just know Aaron.  But there’s one thing I didn’t take into account…..Rosie.
I was in the garden a couple weeks ago when Aaron came home from his day group.  I looked up when I heard the back door open and heard Aaron’s unmistakable, “Mom!!”  I looked up to see him marching resolutely across the yard toward the garden….and me.  “Mom!!” he repeated.  “I’m going fishing!!!”  He was so excited, and I was so surprised.  It took me awhile to figure it out, but I eventually learned that Aaron wanted to go to the Fishing Without Boundaries event at El Dorado Lake.  
Over the next couple days I talked to Aaron about the logistics of that day, including the very early morning.  I was positive and upbeat, and Aaron was determined to go on this fishing outing……..not because of his love of fishing or the lake or the great outdoors, but because Rosie would be there.  He wanted to spend this day with Rosie, doing what Rosie enjoyed.  So we filled out the form, ordered his tee shirt, and sent in the money for his big weekend.  
I saw a little crack in his armor when, a couple days before the big day, he began to worry about the very early time to meet his ride.  So I told him that we would take him to the lake and could go later in the morning with no problem.  All seemed well.  But on Friday, the day before the fishing trip, he woke up rather worried.  He told me that he wasn’t sure about the fishing…..he wasn’t sure about being gone all day……he wasn’t sure about not being home doing what he enjoys.  In other words, he had decided not to go.  I knew it for sure, but I didn’t want to give in too easily.  Yet as we talked, and I saw him getting tense, I knew I had to give him an out….or we would all pay.  So I told him that he didn’t HAVE to go fishing.  Everyone would understand.  
But the only person that Aaron worried about disappointing was Rosie.  I felt badly for him as I saw the struggle that he was having.  He wanted to be with her, but he didn’t want to leave his weekend routine.  He came so close to going, and it was really disappointing that he didn’t quite make it…..but maybe next time, although we have said that same thing for years about various trips and events to which he says a definite, “No!”
On Saturday, Aaron said, “Do you think that Rosie misses me?”  And I felt sad for him.  Then later, “Was it my fault that I didn’t go?”  I knew he was struggling with his decision.  And finally, in the evening, he said, “I feel like I betrayed Rosie.”  That one made me really feel sad, but we talked about it and I could only hope that he felt some peace about his decision.   His routine and his way of doing life is the most important thing in the world to him…..but when he has a reason, a big reason like Rosie, to interrupt his routine….it’s so tempting and he wants so much to be able to make himself comply.  Then he struggles when he just can’t do it.  And we can’t force him to go…..or take away the guilt he had about not going.
So that’s the fishing trip that wasn’t.  And then we had the friends that were…..as in, were here for a visit or to join us for supper.  But Aaron wished that they were also friends that weren’t…..as in, weren’t here for a visit or to join us for supper.  This is when his autism becomes frustrating……humbling (to Gary and me)……and oh, so embarrassing!
First came Kristi, our sweet friend that we have known for 20 years.  Kristi’s dad was our pastor when we lived in Leavenworth, and our families became good friends.  She is now a missionary in France, and is here in the states for five months of furlough.  She is in the Wichita area for awhile, and so she spent Thursday night with us.  Aaron greeted her at the car when she arrived, even carrying her heaviest suitcase upstairs to the bedroom where she stayed…..as he complained all the while that he was not her servant.
He was up and down emotionally with her for the rest of the evening.  He wanted us to watch Wheel of Fortune with him, which we did…..though we turned it on a little late.  He wanted us all to take Jackson on a walk, even handing Kristi the leash to hold.  And he walked a second time around the circle with just me and Kristi, minus the dog.  He would pop up at various times to talk to me and to Kristi, usually about a movie.  But in the midst of it all, he was also rude several times.  He informed Kristi that she was not his boss…..though she wasn’t being bossy…..or she was not his mom.  It’s like he needs to be in charge, controlling his world at home when someone else is there.  A visitor becomes an interloper…..an annoyance…..when Aaron’s schedule is disrupted.  One minute he can be chattering happily and the next he just might puff up and be very rude.  Kristi took it in stride, as our friends always do.  Gary and I are the ones who are the most affected.  Kristi understood and we talked the next day about it after Aaron was gone.  Still, it’s frustrating.  Explainable, but embarrassing.
And then there was Saturday, when I asked our elderly neighbor, Nora, to come over and have supper with us.  Nora is recently widowed, and on Saturday she found out that an assisted living apartment will be opening in one month.  She is overwhelmed with moving.  I felt like she needed company that evening…..some food and talking and laughter.  But there was Aaron, who for some reason has decided that he doesn’t like little Nora.  And he especially decided that he didn’t like Nora coming to our house for supper on this Saturday evening.
Thankfully, Nora can’t hear very well so she didn’t comprehend all of Aaron’s muttered comments.  But she heard enough to know that he was displeased with her being there.  One thing led to another, and by the time we sat down to watch Wheel of Fortune (of course!), Aaron had had enough.  It was not a pleasant scene as he fought over keeping the remote, paced the floor like a wild animal, and was very verbal.  Finally, he yelled at Nora with all his might and stormed outside…..where he sat in the mulch to wind down.  He sat under the pecan tree, where he never sits, but where he was more hidden and farther from the house…..and from his problems. 
Again, our friend understood…..but I knew she was hurt.  We were hurt…..and terribly embarrassed.  It was the worst display of anger toward a visitor that we had ever seen.  Aaron came in and out of the house, even watching the last few minutes of Wheel of Fortune from the kitchen, standing there gazing at the television but not talking to us.  When I walked Nora home, Aaron sat under the pecan tree still breaking mulch…..and glaring silently at me when I walked past him to go home.  Later that night, we were able to talk to Aaron about friendships…..about how to treat our friends…..about how we treat his friends.  I think we made some headway as we compared our friends to his special Rosie, and the importance of being polite and kind.  What if we were mean to Rosie, we asked?  That thought seemed to register with him.
But who knows what will happen when Aaron is once again pulled from his routine?  We might see when Kristi comes back this Thursday night, brave soul that she is.  Aaron wants everything to stay the same in his world, and he will react strongly to whatever disrupts that sameness…..whether it be an event or a person.  Aaron doesn’t care if he hurts with his words.  He just wants his life to be the way he likes it.  I can say that he is selfish, rude, inappropriate…..lots of undesirable traits…..but I can also say with confidence that he is autistic and that we see it more clearly with every passing year.  What registers with our brains does not register with his.  What we can control, he cannot.  If he fell down into a seizure, we would be so empathetic.  But when he falls into an emotional meltdown, empathy becomes anger and embarrassment.  Yet both scenarios are an evidence of his disability……and a struggle for us to always understand and handle correctly.
And I realize that I will always be that mom……THAT mom……who tries to explain his behaviors while wondering if I’m sounding like I’m trying to excuse them.  There’s a huge difference there in the two.  Explaining means we grasp at understanding.  Excusing means we dismiss with no repercussions.  But in explaining I feel that we sound like we we’re excusing.  It gets complicated.
So this morning Aaron got up very early for him.  He came up the hall and into the room where I was having my quiet time.  He just stood there behind my chair, looking at me, so I said, “Aaron, you need to go back to bed.  It’s just 6:00.”
“6:11,” he said with no emotion.
And another day with Aaron has begun, as I smile…..and see what the day will hold.

Author: hesaidwhatks

I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

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