I don’t know that there is any one routine of Aaron’s that
is more important than another, but if I was pressed for an answer I would say
that his bed time routine is way up there near the top of his Important
Routines List. And by the way, it would
be just like Aaron to keep a list of such things if he thought of it, in yet
another notebook for which he would find the perfect spot in his room….and
there it would stay, placed exactly so, every single day of his life.
The strictness of his bed time routine, which includes
going to bed at or very near the same time that I go to bed, is the reason I
began preparing him for a change early Sunday evening.
“Aaron,” I began, “I
need you to prepare yourself because I may go to bed a little early. I’m getting a cold and I don’t feel well.”
I could tell right away that he didn’t like this idea.
“What time?” he asked with a frown on his face.
“I don’t know exactly what time,” I replied.
Aaron thought for a few seconds, pondering this unwelcome
change. Mom might go to bed before I go
to bed?
“Will it be before night?!” he asked with great concern.
I knew he meant before dark. Would I go to bed before dark?! How disruptive and awful…..for HIM. Never mind about my cold or about how I felt. Aaron is, without doubt, most often about
Aaron.
I assured him that I would not go to bed before night, and
he walked away to think on this sudden turn of events. But as it turned out, I ended up asking Aaron
later that evening if he wanted to play a game of SkipBo. That game took up part of the time before
night, so Aaron was saved, and our bed time routine was really no different
than any other night.
During the night some storms moved through our area. They were pretty rough storms, and we briefly
lost power several times. That meant
that Aaron’s clock on his night stand was disrupted and probably flashing, I
thought, as I reset the clock on the microwave that morning. Sure enough, when Aaron walked in the kitchen
later, the first words out of his mouth were about his messed up clock.
“Mom, the clock by my bed shut down, so I can’t write in my
book what time I got up. Can you fix it
now?”
Knowing the importance of this part of his morning routine,
I followed him upstairs immediately. He
called out the time to me from his satellite clock by his desk as I pushed the
buttons on his clock and got the time just right. He then wrote the correct getting-up time in
his notebook, and all was well for the moment.
Aaron dressed and came down to the kitchen again to take
his pills. Soon he was holding an object
of great interest to him…..a summer squash from our garden that was very dark,
bumpy, and tough. Any item that is the
least bit unusual holds Aaron’s attention, and for the moment this bumpy squash
was what Aaron wanted to hold and feel and talk about. In fact, he carried the squash up to his room
and placed it on his chest of drawers. I
was tempted to bring it downstairs right away, but I decided to leave it there
for the time being. What did it hurt?
Aaron had a doctor appointment later that morning. As we drove across town, he told me about a
song from a movie he was watching. He
hummed the song for me to hear and to identify.
Usually I can’t really tell what he is humming, but this time he did a
great job and I knew the song….except for the life of me I couldn’t remember
the title. I told Aaron about my Sound
Hound app that would let me hum a few bars while it identified the song, so
Aaron could hardly wait for me to do just that.
We found an area of the doctor’s waiting room that had no one sitting
close, and so with a very excited Aaron sitting beside me, I sat there humming
this song into my phone. It was pretty
funny! And sure enough, Sound Hound told
us that the song was “Joyful, Joyful We Adore Thee.” Aaron bent over in his chair, his hands
rubbing together quickly and with great delight, as I wondered how on earth I
could forget the title to that song.
We waited to be called and Aaron, who can hardly keep his
doctors straight by name, asked, “Is it gonna be that one who asked me if I use
drugs? That was dumb!” No amount of explaining will ever change
Aaron’s mind that it was very dumb for a doctor to ask him if he uses drugs. The doctor soon called for Aaron to come, so
we both followed him to his office. He
stepped back for us to enter, and he said, “Hi, Aaron!” To which Aaron replied….with nothing. Total silence. I was glad that he smiled with what I hoped
was understanding. This is just our
second time to see this doctor, who is supposed to have an understanding of
autism. I hoped that understanding of
his was working today.
The doctor began asking questions about how Aaron was doing
since the last visit. How are his
seizures? So we discussed that issue at
length. How are his behaviors? We talked about that as well. I was talking and the doctor was listening,
when suddenly on my leg came a big WHACK!!
Aaron had soundly hit me on my leg, right in front of the
doctor. And then Aaron immediately said,
“Tattle teller!!”
That was what Aaron used to say when he was a kid if
someone was telling something they shouldn’t, or something he wished they
weren’t. The doctor’s eyes were staring
from over his computer screen as I talked to Aaron. I knew very well why Aaron whacked my
leg. He was frustrated at being talked
about. He does have feelings. So I explained why the doctor needed to know
these things, and the doctor chimed in as well, and Aaron settled down. Oh well.
The doctor may as well see Aaron as Aaron is. And it was probably good for both the doctor
and me to be reminded of Aaron’s sensitivities.
I know that Aaron is facing another sensitive issue today,
too. One of his favorite Paradigm staff
has left, and so Aaron’s life there will change a lot. I know that if one thing in life is certain,
it is that life will change. Easy for me
to say……far harder for Aaron to deal with in an appropriate way. Of all days for Aaron to find this out, too. Aaron was grouchy this morning about going to
his group today. Three days off sometimes
does that to him. He went willingly
after working through it, but gave the van door a little harder shove closed
than usual when he got out. I have no
idea how his day has gone or if he knows of his staff that has left, but I’m
sure I’ll soon find out when he comes home.
I thought of all this when I walked upstairs earlier and
saw the bright yellow squash sitting in Aaron’s room. That squash, so full of bumps. The bumps are what fascinate Aaron. They are also what make that squash somewhat
tough.
Aaron has plenty of bumps in his life, too. I’ve seen several of them in the past couple
days, much less all the years that he has dealt with so much. Bumps in the road are a part of life. Some seem to have more bumps than others,
that’s for sure. Gary and I are
sometimes able to ease Aaron over the bumps, like I tried to do concerning the
possible change in my bedtime. Sometimes
issues are easily solved, like changing the time on his clock or humming into
Sound Hound. Other matters are deeper,
like the one evidenced by the whack on the leg that Aaron gave me. He didn’t like being discussed, but it’s
necessary. It’s painful for us both, and
is a bump that he and I both deal with at nearly every doctor visit.
This new bump, of one of his favorite people being gone out
of his life now, will be a huge new bump for us. I don’t know how it will affect Aaron. He may surprise us and do well. He may have good days and bad days. But it’s a bump that we will be forced to
navigate one way or another. I’m
thankful for the wisdom that God promises to give to those of us that are
lacking and that ask Him for it. I have
been asking today, that’s for sure!
Maybe I’ll just leave that bumpy squash in Aaron’s
room. It will remind me every time I see
it of this time. Hopefully I will look
at it in the weeks to come and remember how God eased us over yet another bump
in this road we travel with Aaron.
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