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.
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