I thought I would share some highlights (or not!) of Aaron’s
week. It’s been full of ups and downs,
as usual. Our life with Aaron is always
a yo-yo type existence. We may be
laughing one minute, and not long afterward we may want to cry. That’s where I’ve been this week. Thursday was my day of tears…..tears of
frustration and worry for Aaron as he bears the repercussions of his behaviors. Aaron had a rough time at his day group on
Wednesday, so he wanted to stay home on Thursday. I let him, all the while wondering if I was
right in doing so. I wish I could say I
have all the answers, but Aaron constantly shows me that I do not.
I’ve been with Aaron, even recently, when he walks
into Paradigm, his day group. As soon as
he walks in the door, he puffs up and usually launches out toward someone. It may be to say hello and then try to say
something funny while he bends over and rubs his hands together in glee….or it
may be to give someone a resounding whack on their arm or back or rear…..or it
may be to step on someone’s foot……or it may be to say something that he thinks
is funny, but which is not funny at all.
Clients and staff have the same reaction that Gary and I have at home,
either laughing or cringing or having to correct.
After his rough day on Wednesday, and his stay-at-home
day on Thursday, I was wondering how Friday was going. When he burst in our door at the end of his
day, he was happy and smiling. We talked
awhile before I asked him how his day had gone.
He told me he had a good day. He
went to a movie with the group, and Stephanie and Shauna asked him to sit
between them. We talked about his
popcorn….extra large, of course…..and I asked him if he had gotten a refill.
“No,” he answered.
“Because I don’t want to get fat like ______.”
See? There he
goes, being offensive…..and he just doesn’t get it, or can’t control his words,
or doesn’t care. Who can know from one
moment to the next? I scold and correct,
but he is still sure in his mind that he doesn’t want to get fat like _____,
and Mom asked if he got a refill so he had to tell her why he didn’t, and I
feel that my words are useless. Sometimes
his words are actually humorous because of their bluntness as he says things
that others would never say, at least out loud, but we can’t let him see us
laugh. Personal insults are never
humorous, though, as we tell him repeatedly.
Anyway, he decided that it was important to tell me
about a good thing that happened. “Mom!”
he exclaimed. “I made Shauna laugh
today!”
“Well, that’s good,” I answered with a hint of caution
that he didn’t notice. “How did you make
Shauna laugh?” I asked with a little dread.
“By making farting noises!!” he proudly answered,
bending over then while he rubbed his hands together in delight. How does he have skin left on his hands
anyway?
You see why I ask with dread. Do I act proud that he made Shauna laugh,
even though it was because he made farting noises? Or do I frown and try to correct his
continual use of farting noises for affect?
I chose to try to correct, with a smile, but he was already off and running
with his next subject.
We had our first spring thunderstorm on Monday
night. Aaron loves thunderstorms and
rain. I didn’t even realize we were
about to get a storm as he got ready for bed and told me goodnight. His bed was just right. We had gotten all the bumps out of the
covers. Well, I had, as he stood there
staring at the one large bump that he wanted smoothed out before he would
progress any further with his bedtime routine.
Mr. Snake and Mr. Skunk were in his bed just right, too, so I was able
to hug Aaron goodnight and escape to our bedroom…..where Gary and I lock our
door on most nights for our well-being and peace.
It wasn’t long before I heard the first rumble of
thunder, soon followed by another rumble.
Thump, thump, thump! That was
Aaron walking with great purpose up the hall.
Knock, knock, knock on our bedroom door….after he had tried to first
open it without knocking. Thus the lock.
“Mom!!!” Pause.
“What, Aaron?”
“Was that thunder?” he asked.
Yes it was.
Thump, thump, thump back to his room.
Soon…..thump, thump, thump back to our room. Tried to open door. Knock, knock, knock.
“Mom!!” Pause.
Yes, Aaron?
“Is it going to rain?” he wanted to know.
I think so, Aaron.
Thump, thump, thump once again to his room.
But not for long.
Thump, thump, thump to our door once more. Tried to open door. Knock, knock, knock.
“Mom!!” Pause.
What now, Aaron?
“Is it raining yet?” he asked.
I don’t know!!
WHY DON’T YOU LAY DOWN AND LISTEN??
Thump, thump, thump down the hall again…..for the last
time, thankfully. He did lay down in his
bed and listen to the storm, and to the little bit of rain that we got. It’s a process for Aaron, though.
This morning Aaron was eating some of his Colby Jack
cheese cubes, which he loves. It wasn’t
long before his hand reached over my shoulder as I sat at my computer. In his fingers he held a solitary cheese cube….for
me. When he offers me food like that,
held in his fingers that have been who-knows-where, my brain is yelling, “NO,
NO!! Don’t take it and definitely don’t
eat it!!”
But my heart says, “Oh now, come on. It means a lot to Aaron for you to take it,
and even more for you to actually EAT it.”
You see, I’ve often tried to delay the eating of such
offered treats, but Aaron follows me and watches me until the morsel is in my
mouth, chewed, and down the tubes. No
fooling Aaron on that one. My immune
system is awesome, probably due to all the germs I ingest with each Aaron food
gift. I thanked him for the cheese cube
as I held it with suspicion, hopefully suspicion that was hidden from him.
“See?” he said as I watched him put a cheese cube to
his mouth. “There are two ways to eat
it!”
He then demonstrated how you can bite the small cheese
cube in two. “You can bite the half
off!!” he declared with delight.
I laughed as he laughed. Only Aaron would take a boring cheese cube
and make it funny. He never did show me
the second way to eat a cheese cube because he followed me while I went
upstairs, still holding my cheese cube, as he watched like a hawk to see when I
would eat it…..either whole or by biting the half off.
“I know what Colby Jack is,” he told me. “It’s cheddar and swiss!!”
So then I was laughing at my silly little cheese cube
as we discussed its true make-up, and I promised Aaron that I would eat it….which
I did. No side effects yet.
Little things become so huge to Aaron. A storm….a cheese cube. Through his
observations I find myself drawn into the complexities of even the most mundane
things. And yet Aaron so often cannot
see the complexities of things that truly affect his life…..things like his
comments and his behaviors that can be so annoying and insulting. He would much rather talk about a storm or a
cheese cube than talk about his hurtful words or his hitting. This is the hidden element of his disability
that so impacts his life, but he doesn’t get it. It’s very hard to always remember this about
Aaron, and to react with understanding and instruction.
That little cheese cube reminds me so much of
Aaron. He thinks it’s Cheddar and Swiss,
and we’re reminding him that it’s Colby and Monterey Jack. He thinks it’s all right to do this or say
that, and many of us are reminding him that it is not all right to do those
things. Life is not meant to be lived
the way that Aaron often perceives it, so we keep hammering away and hoping
that someday…..or at least on most occasions…..Aaron will remember what should
truly comprise his interactions with others.
It’s not farting noises, either, by the way.
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