One of the
main characteristics of Asperger's Syndrome, or any other form of autism, is
the insistence on sameness that displays itself in a multitude of ways. Aaron manifests this characteristic in so many
areas every day of his life. One way in
particular is his bed, as I've written about in other blogs. Every tiny aspect of his covers, his pillow,
his nightstand, and even the items that he insists on putting on the floor
around his bed must be just so-so. If
they are out of place then Aaron cannot rest.
I remember
when he still put his stuffed animals on his bed. He did this into his early 20's, which
bothered me a lot. I tried to get Aaron
to put the animals away but he wouldn't hear of it. Every night he would meticulously place each
animal on the bed in just a certain order, each in their own place that never
varied. Then he would adjust each arm,
each paw, each ear, each tail............and step back to view his bed. If anything was out of place he would then
adjust it carefully. Or if we messed
anything up as we said goodnight, it had to be fixed immediately. Only when it was all exactly right would he
softly climb into bed and settle down for sleep. When Aaron had his VNS surgery, his upper
chest and neck were very sore from the incisions. Only then did he agree to let the animals
stay in their crate in his closet. Lo
and behold, he realized that he could sleep just fine without his stuffed
animals! And also saw that he had more
room to toss and turn without the fear of messing up a tail or an ear on his
stuffed companions! He has never asked
for them again. Victory!!
One day
years ago I bought Aaron a body pillow to use.
I thought that it would keep him from settling at night into the space
between his two regular sized pillows, where I would often find him during a
seizure or when getting him up in the mornings.
Sure enough, he slept very well on his new large pillow and has never
wanted to go back to regular pillows again.
There are some requirements for his body pillow, however, when we help
him make his bed or change his sheets. The
pillow must be stuffed smoothly and fully into the very long pillow case, with
no wrinkles or bulging. And when placed
on his bed, the zipper must always go on the left side of his bed. Always.
This morning
Aaron was grouchy, not wanting to go to Paradigm. I just treaded lightly as I poured his coffee
and offered him some breakfast, which he refused. I went about my business as usual, hoping all
the while that he would settle down and cooperate. I still
kept up my soft tone while being firm, not giving in to his demands to stay
home. And for some reason, he did start
calming down. I was in my bathroom
getting ready when I heard him walk into my room and say, "Mom,
something's wrong with my pillow."
I glanced out into my bedroom to see that Aaron had placed his long
pillow on the end of our bed.
"What's
wrong with it, Aaron?" I asked. He
pointed to it and said, "See? It's
all fluffed up!" I couldn't see
anything fluffed up about it, but I knew that in his current mood I needed to
take his concern seriously. Any
dismissive attitude on my part pertaining to his pillow would possibly only
escalate his fragile mood. I peered down
at the seemingly normal pillow as he pointed out the problem. And yes, there it was...........clear to me,
since I do tend to see the world through Aaron's eyes.
The
pillowcase had been changed the day before, and the end of the pillow that
Aaron sleeps on.........the unzippered end..........was not perfectly flush
inside the pillowcase. The two sides at
the end of the pillow were a little folded in, which made the two corners of
the pillowcase sag down a little. So
this was why, when I went in to get Aaron up this morning, he had pulled the
pillow way over so that he was sleeping in the middle of the pillow and that
unzippered end was hanging off the bed.
He could not bring himself to sleep on that part of the pillow that
wasn't just right.
And he
confirmed this as he said, "I had a hard time sleeping on my pillow,
Mom. It wasn't right! It was all fluffed up!" Yes, it was a little poochy there........fluffed
up, as Aaron says..........so I pulled the pillowcase back until it was nearly
off and I made sure the corners of the pillow were rearranged so that they fit
into the corners of the pillowcase.
Aaron watched carefully. I laid
it back on our bed as he examined it..........and was very relieved when he
gave me his word of approval.
We put the
pillow back on his bed then, making sure the zippered end was on the left side
of the bed, of course. He had already
asked me if I would help him make his bed while he was gone..........which is
really asking me to just make his bed while he's gone, which I've told him over
and over. Anyway, we got every cover
just right and all the wrinkles tugged out and things tucked in that must be
tucked in..........and Aaron was happy.
It was such
a small thing, that fluffed up pillow.
It would have been easy for me to dismiss it in my hurry to get ready. But that small thing to me was no small thing
to Aaron, and it was best for me to recognize that and deal with it in an
understanding way at that moment. It
saved a lot of anger in the long run, that's for sure. For Aaron would have been angered and
bothered all day over that fluffed up pillow, and at my lack of comprehension
about its importance.
This is a
lesson that is reinforced almost daily in our home............that small
matters can be huge to Aaron, and to save huge outbursts or distress on his
part, it's best to nip it in the bud.
Repairing the fluffed up pillow was no big deal, seemingly, but it sure
was to Aaron. He saw my interest, too,
and I hope he saw my love for him. He
went happily to his group, chattering all the way. That makes for a good day for both of us!
And I'm sure
that we'll both sleep better tonight.
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