Hollywood aversive
Gregg MacKinnon
In article <Pine.SUN.3.91.951113...@mothra.syr.edu>, "Stephen N. Drake" <snd...@MAILBOX.SYR.EDU> writes:
>
[Original post regarding FC and SIBIS snipped to cut down on the >s]
> Thanks for replying, Gregg. I had actually been looking forward to a
> response from you in regard to my last reply to one of your messages, but
> I appreciate the thought that went into this one. (I was actually hoping
> that KIMMI would reply to my request for a more exact reference to the
> article in question, but no such luck.)
Steve, Are you refering to the "ReplyTo..." thread? If so, I really don't
have any more to offer on it. I don't mind getting any posts involving
autism, whether I agree with them or not. Although I am not crazy about
my posts being transported to AOL, as I don't have access, I guess I'll
have to live with it because it's beyond my control. If it's about a
different thread, let me know. I read this on bit.listserv.autism and
the newsfeed is very idiosyncratic, and is sometimes more than a week
behind. I'll get the LOGXXXX file and see what didn't make it here.
> The fact that someone types something through FC doesn't strip the
> communication of the other dynamics involved. And I'm sure that most
> would agree that parent/child communication is very complex. Power
> dynamics, affection, desire to please... these are just a few factors
> that can affect the answer given in a situation you describe.
This wasn't parent/child communication. Katie always refused to use
FC at home. Katie's teacher, who was very disapproving of us even
considering the SIBIS, relayed the message in the parent/teacher
log. I'm sure some of those dynamics still apply, that is why we
were surprised when Katie communicated to the teacher "why didn't
we think of this sooner".
> There is
> also the question as to *what kind* of choice is offered, as there are
> ways of going through the motions of presenting a choice that actually
> points to only one acceptable option.
True. Katie had 2 years of options. She was in a class that used
Gentle Teaching, some TEACCH tasks, many choices for recreation,
and a teacher who used "Progress without Punishment" as a bible. Katie
could not have had more caring people involved, and still the SIB
escalated, the damage more severe, and the "protective devices" or
"restraints" got more and more restrictive, and less effective.
It would be easy to say that everyone involved with Katie
in those 2 years was incompetent, but that wouldn't be fair or true.
> There is also the point that some choices just shouldn't be offered in
> the first place.
True again. That is why there are parents. I really don't even know
how much weight we attached to Katie's "consent" to the SIBIS trials.
Her physical and mental health had deteriorated far past the point that
she could make a reasoned decision.
> As an example, we have many many homeless people in our
> society. Some, given the choice, might find the option of becoming a
> slave preferable to their current plight. Obviously, our society,
> doesn't offer near enough in the way of support for people who find
> themselves in that situation. But we also seem to agree that a choice
> (slavery) that might solve some of their immediate problems, is not
> something that should be offered, even if some people might suffer some
> immediate physical relief in the short term.
I'm not sure that your homeless/slavery,short-term/long-term problems scenario
applies in all cases. Katie's behavior was such that, without short-term
relief from the 18+ hours a day of beating and biting, and without giving
her a chance to heal from 2 years of self-abuse, the long-term problems
Katie faced (and still faces) were irrelevant.
I agree that society doesn't offer enough support for many people, including
kids in Katie's position, but she and we didn't have time to wait
for that situation to improve. I also agree that some choices should
not be offered (or in this case, should be taken away) so that long term
health and goals can be achieved. That is why we can no longer allow
Katie to choose Self-Injury.
> Steve
Thanks for asking,
Gregg
Dave Nelson
(or trying to) about 50 times a day, as if he had a urinary infection
(which he doesn't). Sometimes he actually goes and sometimes not. He also
had some pretty strong behavioral changes (regressive) during the first
week.
Does anyone have any similar stories, especially about the frequent
urination?
We're about to take him off the Nystatin (its been a week) to
see if the urination problem goes away. We alos just realized that
the Nystatin we're taking has some red dye in it, and maybe that's causing
it.
I'd love some affirmation, corroboration, criticism, whatever.
Wayski
As you know I have been following this thresd for a while. Many common
themes seem to re occur: 1) when using aversives such as SIBIS you need
to to continually "up the ante" (i.e., increase the voltage). Have you
had to do this with Katie? 2) Aversives have only very short term
effects and then they wear off. Do you find that you need to use the
SIBIS more often with Katie over time? 3) Aversives (esp. SIBIS/shock)
seem to some to constitute child abuse. Using them (aversives) gives the
user a feeling of power over those who are less able. Do you feel like
you are abusing Katie when you use the SIBIS?
As always I would be interested in the questions I posed. Since you have
actually used and experienced the SIBIS, I would be most interested in
your answers.
Respectfully,
Wayne
CFB...@aol.com
sugar out so the candida will die. Check it out, and try to get the liquid
suspension that has no sugar OR ASPARTAME. Candace
Peter Zwack
for regression. It may take another week before the new toxins are
eliminated. Maybe someone else can fill this info in.
Peter
Mark H. Wood
[deletia]
>True again. That is why there are parents. I really don't even know
>how much weight we attached to Katie's "consent" to the SIBIS trials.
>Her physical and mental health had deteriorated far past the point that
>she could make a reasoned decision.
How does she feel about it now?
--
Mark H. Wood Speaking, as always, for himself MW...@INDYVAX.IUPUI.EDU
The pigeonhole ain't been built that can hold me.
Gregg MacKinnon
Wayne,
I have heard all these concerns before, but not usually in the
form of questions. And, of course, they are concerns that we have to face
if and when these situations present themselves.
The answers to your questions are:
1) No we never have had to increase the strength of the shock. I don't
know that we *would* do that. To me that might be an indication that
it wasn't effective anymore. And it would depend on what other options
were offered by the medical, psych professionals.
2) Actually the opposite. As time passes, and her 2 years of self-injury
fade further and further into the past, the very strong tendencies toward
that behavior also decreases. We keep data sheets for the psychologist that
oversees Katie's program, so we know the rates, and guess at antecedents, etc.
That way we can figure out some of the things that agitate her to the point
of considering bashing her head, and we can avoid those things or adapt
them so that they are more acceptable to her.
3) If you knew Katie better, you'd know that she pretty much runs the house.
When she wants to watch her music videos, which is almost constantly, we are
relegated to watching the news on the 12" tv in the kitchen. She was in and
out of helmets and stiff arm restraints for 2 years, which completely re-
stricted her freedom. Yes, they stopped her from killing herself, but they
also stopped her from feeding herself, toileting herself, and her happy
hand-flapping that she used to ( and does again) love so much. So no, I get
no feeling of power or control from using the SIBIS, anymore that parents
whose kids are on a prescription drug get a sense of power.
Thanks for asking,
Gregg
Gregg MacKinnon
Gregg MacKinnon
> gmac...@pms156.pms.ford.com (Gregg MacKinnon) writes:
> [deletia]
> >how much weight we attached to Katie's "consent" to the SIBIS trials.
> >Her physical and mental health had deteriorated far past the point that
> >she could make a reasoned decision.
>
>
be very functional, so I don't know what her "own words" be. But she knows
it's purpose, and the behavior that brought it about. As time goes on, Katie
will occasionally take the SIBIS off and put it on the table. She knows that
when she is in a good mood, she is less likely to hit/bite herself. Conversely,
when Katie is agitated she won't even try to take it off, because she seems
to know that she is more vulnerable to SIB at those times.
> --
> Mark H. Wood Speaking, as always, for himself MW...@INDYVAX.IUPUI.EDU
> The pigeonhole ain't been built that can hold me.
Gregg