I wish I were dead
I’ve discussed here how Pearlsky likes to put her fingers in her mouth. And I’ve discussed the horrible lengths to which the school personnel will try to stop her from doing this. I truly think it is insane to try to stop Pearlsky from doing what appears to be the one thing she can control, she can repeatedly do, and seemingly brings her pleasure. They do this by putting things on her hand or trying to stop her hand from going to her mouth, anything to stop what they believe to be inappropriate oral stimulation.
Well, how about this. What if Pearlsky is trying to get tactile stimulation for her fingers? What if it is nothing about her mouth, which they are concentrating on, but simply offering other tactile finger stimulation would work? Why can’t they think of these things?
Later this week we need to be in big city hospital number 2, at eight in the morning. First for a botulism toxin injection (ooh, ooh, pick me, pick me!) and then for several appointments. One with Dr. Chief of Pediatric Department 1, then one with Dr. Chief of Pediatric Department 2, then with Mr. World Famous Guy Who Deals With This Stuff And Just Returned From Giving Lectures In Germany And France, and, of course, a meeting with all of them together. Yes, the stuff I ain’t talking about nor dealing with. Just yet. The appointments and the day loom.
Time for a coffee break.
The title of your post had me worried and came over from Erika’s to check if all is okay! Tiring, annoying, frustrating, but do-able I guess, hospitals that is.
There used to be a video about AS on-line but looks like someone took it down, anyway, had a bit about the chewing habits of people with AS. There was no recommendation to try and stop it on there, but an explanation that yes, there are many sensory receptors being stimulated by this in the mouth (not mentioned but I assume also in the hands too.). This video was English, on an a U.S site, also about AS, ABA was recommended to reduce behaviour if it is preventing the person from engaging in other activities (is there a philosphical difference between countries?). My own understanding is you cannot “extinguish” a behaviour, but can try and replace it with something else – as you said can’t they offer something else that is tactily stimulating! And indeed, shouldn’t they now this?
If it’s making Pearlski’s hands sore or damaging them in anyway, have you tried those chewytube things? When Dimitri was younger he had to be holding something all the time (and most things also ended up in his mouth too), he was and still is particularly fond of worry beads (although not recommended for chewing on)
I’ve no doubt you’ll keep the doctors in order:)
Maybe you should have a look at what babies chew on and find something similar, but more suitable for her.
I was looking at this one: http://www.thinkgeek.com/geek-kids/newborn-infant/b0a3/ for our next little one.
Totally unrelated to Pearlsky, but you should have a look at this: <link removed> It’s amazing!! I’m tempted to buy one for myself to prevent me from spilling milk when walking with my cereal from the kitchen to my computer…
Edit: Your site thinks my comment is too spammy. Can I help it that I like ThinkGeek? So I had to remove the second link, instead you can search for Loopa Gyroscopic Toddler Bowls on the ThinkGeek site.
Well I know where you can get some good coffee.
Hand in there dude. Sounds like you have a tough week, um, life, ahead. I got some new velcro tape though, and I am down a dress size, does that help?
Unless Pearlsky is gnawing on her arm and drawing blood, there is no reason why she shouldn’t put her hands in her mouth. As you said, that’s one of the few things she can control – why stop her?
Just a suggestion, but maybe you should continuously chew your fingers during the next IEP meeting. 😉
Best of luck at Pearlsky’s appointments, especially the Botox. Do they sedate her for it? We’re going to Monkey’s Big Hospital this week as well, where he got his first round of Botox without sedation. I’m wondering if that’s the protocol for most doctors/hospitals, or if we just had a particularly cruel doc. As for the “other stuff,” I guess you’re going to leave us in suspense, eh? At any rate, I’m sending positive thoughts for all to go well. Take care.
Why do these people do that? It’s like they think if they can halt behaviors that aren’t “normal” that people won’t think the person is disabled. Like hand flapping or finger sucking is the real barrier to a normal life.
If she is not doing physical damage to herself what’s the harm? Why not chart the time, rate and duration of her sucking to see if it is indicative of anything before deciding it’s bad. Might there be a law about restraints where you are? State licencing here would have a FIT if anyone was found to be using a restraining device in place of behavioral modification. Restraining is supposed to be for emergencies only, like when a person is having a violent outburst.
Is it even in her IEP that she is not to suck her fingers? Are they insane or just stupid?
I know this is an old post, but I’m new and just making my way through your blog, and this- teachers/schools doing something that the parent DOES NOT WANT- makes me SO ANGRY!
FWIW, I’m a teacher of students who are severely disabled. Pearlsky seems very similar to some of my students. As a teacher, (and I’ve had students who mouth their hands all day), the mouthing bothers me- from a hygiene perspective. BUT, if you, the parent, do not want these interventions, they should absolutely positively NOT be implemented.
For another thing- IF you wanted to change this behavior, there are far better ways to do it than restricting someone’s movement. (And in the state I teach in, we would have to have a doctors order to use ANYTHING that would restrict a student’s movement.)
Ok… taking a deep breath, and moving onto the next post. Sorry for the rant.