Very challenging indeed. Even trying that she is "a princess" only
while wearing the gizmo (or one or more of several?) may not work.
She wouldn't understand the concept... at least, not right away. She
does 'get things,' though. We never know what she wants to spend time
on until she shows us, so we continually supply different things to
see what catches. There are some movies she seemed to like -- Roger
Rabbit, for example. But often for movies, at first, it seems more
about sounds and music and perhaps some basic actions. But after
watching some movies maybe 50 or 100 times, she will start laughing at
the right places or changing moods where others might, which tells me
that over time the broad strokes in the movie begin to come across
almost like they do with many 'normal' folks and she understands a lot
more. But some things may take years. "A princess" feeling is
something I suspect would take a very long time to instill.
Something I haven't mentioned is that in all her 25 years she has
never reacted to physical pain -- severe or otherwise -- by crying or
crying out like many will. She has accidentally pressed up on a
searing hot piece of metal and sustained 3rd degree burns without us
knowing, right away. She laughed and did things like always, the only
difference we noticed being that she seemed to react a little more
negatively to abrupt sounds, like a phone. Now, she has always
freaked out with a phone ringing or a dog barking and so on. Noises
that most of us accommodate, often even losing notice to us like that
of a closing door, will send her reeling and freaking out. That is,
if those sounds aren't under her control. But we can tell when she is
a little _more_ like that than other times. And in this case, we
noticed and started looking more closely at her for physical injury.
Sure enough, there it was. She sees no reason to cry, no purpose --
she knows it doesn't change the pain and she doesn't understand that
sometimes we can help. So she just grins and bears it. Very much, I
imagine, as a great many creatures do in the wild. (A cat will often
get an abscess that "blows out" their cheekside. But they don't
complain, don't cry, don't moan. They move on. She is very much like
that.
When she broke her radius and ulna in one grand mal seizure a year ago
last October, and I discovered it as I helped her through the seizure,
she woke up from the seizure that time quite quickly. But while I was
totally screaming to my wife to find a 90-degree angled piece of
Styrofoam in which to rest her broken arm, and going nuts trying to
keep her from moving it in the meantime to mitigate muscle and tissue
damage from grinding against the broken sharded ends of bone, she was
just curious. She looked at her arm, tried to use it, found it odd,
but never for a second showed the slightest signs of a grimace or
crying or anything. Curiosity, almost. I got her packed up, taped,
dressed and started taking her into the car to bring her to the
closest emergency center 5-minutes away, and as she tried to use that
arm to help me close the car door.
Now, I _know_ for a fact she feels pain and feels worse pain more.
That comes from other observations. But she does NOT react to it,
even of the most painful variety, except with an almost stoicism and a
remarkable clarity of thinking about it. It's one of those things I
keep marveling about, trying to grasp it more fully. It's a stand out
thing about her.
She also _cares_ a great deal, about animals and people and things. If
anything is damaged or fails to work, she brings it to me to fix. If
an animal is hurt, she tries to get me to deal with it. If one of us
is hurt, she carefully watches and will be far more sensitive to us
than otherwise she might be.
Regarding the noises that disturb her and the fact that I earlier
mentioned (or hinted) that ones she makes don't disturb her (as much,
anyway), it's like that in all of us. Just very much heightened in
her. For example, consider the idea of someone coming up behind you
with a firecracker and setting it off without you knowing it. Your
reaction is sudden and quite often filled first with fear and then
quickly after with anger. Not everyone's reaction will be exactly the
same and we do "learn" and "adapt" -- especially if this happens a lot
to us. But if you aren't pre-conditioned, that event includes
frustration, possible fear, and quite likely anger -- with anger
perhaps taking a second or two to arrive in clear form. Now consider
the idea that someone tells you first and instead of setting it off in
back of you, they do it in front of you where you can see the fuse
dwindle down. Let's say, same distances to your ears either way. In
this case, you can mentally 'steel' yourself and the impact is far far
less. We are able to "prepare" ourselves, and this preparation no
doubt in my mind involves physical changes that our brain initiates in
anticipation which helps to mitigate the event's necessary chain of
triggers within our bodies... perhaps with the early release of COMT
and MAO, though I'm not sure about exactly what mechanisms are in
play. I just know they work.
She's like that, too. If she is the reason or cause, she is much
better able to handle it. But if the sound is not in her control -- I
close the door, she doesn't, for example -- then her reaction is
strong... very strong.
On a more mundane note, we do this all the time with the closing of
doors. When a door closes behind us, the sounds reach our cochlea and
almost immediately, at a very low level, signals to the pituitary
gland to trigger an adrenaline (epinephrine) release. This is
measurable, by the way. Shortly later, higher functioning levels in
the brain associate the sudden sound with a door closing and another
signal arrives, triggering the release of digestive enzymes like COMT
and MAO. Although there is a measurable pulse and decay, we learn to
completely ignore the visceral responses over time. Yet they remain,
while many of us almost completely subsume the event into near
unconsciousness unless it is a particularly remarkable closing of a
door.
Now imagine that she does NOT have this follow-on mechanism -- some
part of it is broken. Every time I say something, it is a series of
sounds... rata-tata-rata-da-da-da... that reach her ears and perhaps
trigger epinephrine releases. Every time a phone rings... Every time
a door closes... every time something sound-wise takes place that has
a rapid attack (in the attack-decay sense) to it, she gets "hit" with
adrenaline. But she has no mechanism for COMT/MAO enzyme triggers, so
the decay is much, much slower to leave. And she is in a heightened
state of anxiety that doesn't readily leave, so new "impacts" add and
add.
It's a lot like that, I think.
Jon
