For all we know, if she has any control over this, then it is either enjoyable, feels good, is comforting, or something else positive to her.
I have high-functioning autism and am planning on becoming a special education teacher and I would like to work with profoundly disabled students like Pearlsky.
Your blog (and many others) are very, very helpful to me. [editor’s note: There are no other blogs!]
Some are not going to like what I have to write below but I wish to get your opinion on this because you have so much more knowledge about this than I do.
I know that Pearlsky and others like her are profoundly disabled and cannot truly be “taught” anything. She has never achieved a “goal” on her IEP and, being realistic, she probably never will. How old is she now? I assume around 15/16?  The odds of her ever achieving any IEP “goal” are extremely slim.
Wouldn’t it be better, if while Pearlsky was at school, she was given positive experiences? Can’t “education” also be considered to be experience? Wouldn’t it be better if her time was instead spent having enjoyable sensory experiences and being loved (nothing inappropriate, obviously) than trying to get her to use a straw? I imagine she spends all of her school day in a self-contained classroom. Why force her to spend all of her time in a room all day trying to get her to attain goals that never will be? It would be like forcing me to sit in a room all day and learning to open the door with my thoughts.
I don’t think that is a very good life. The teachers, OT, PT, etc. obviously haven’t achieved anything, by your own admission, and probably never will. She chews on her hand, which may or may not be voluntary, and which may or may not lead to some avenue of communication; I doubt that it is but would explore the possibility. If it doesn’t do the girl grave harm, if she seems to enjoy the experience, than why try to stop the behavior? Labeling the behavior as “socially inappropriate” isn’t an excuse to stop a harmless, perhaps comforting, behavior. Being profoundly disabled like Pearlsky, in itself, is “socially inappropriate,” isn’t it? Is getting her to stop chewing on her hand going to make her more “socially appropriate?” Obviously not. It’s not as though by trying to get her to stop chewing on her hand that she will suddenly be “socially appropriate.”
Most people with disabilities get intensive “education” while in their youth but some never improve. I understand doing such a thing, obviously, because some people do improve and some improve dramatically (as is often the case with autism). But some, like Pearlsky, do not and never will. Is she still being taught (attempt to teach, anyway) the same things she was when she was 6? Learning to use a straw has been on five previous IEPs? So then really, why bother?
I’m definitely not “writing her off;” quite the contrary. I want people like Pearlsky to have enjoyable lives, not ones where they are sitting in a room all day forced to try and learn tasks that are impossible for them.
If I were in charge of Pearlsky I would give her enjoyable experiences in addition to physical therapy etc. Screw sitting a classroom all day learning how to use a straw: I would take her outside every day that is possible, let her enjoy the outdoors, wheel her around to different places. In the classroom there would be music and lights and other sensory experiences for her to enjoy, she would be read to, talked to, hugged; she would be loved.
And what about having Pearlsky “teach” others? I’m definitely not one to exploit people and would never do it if anyone objected but people like Pearlsky can teach others a lot. I know that sounds cheesy and that I’m just blowing roses out of my butt but it is true. People like Pearlsky are often abused and neglected so perhaps if profound disability was more present others would become more aware of it, more accecpting of differences, aware of others needs, etc. I think some students would be more than willing to be with Pearlsky and give her enjoyable experiences. She can have “friends” just like everyone else if others wish to be (I would never force anyone to be “friends” with her merely because she is profoundly disabled though). Why not have willing students (with supervision, if needed) be with her at some times, take her to school assemblies, events, basketball games, etc.? People should be willing to do things with Pearlsky just like they would with people who are not profoundly disabled.
Or are people too embarrassed to be seen with her because she is “socially inappropriate?” Pearlsky is a human being just like everyone else, lest society has forgotten that she is, again.
You should take her to the senior prom! (Maybe that is a little over the top for you; sounds like something I would do though if it wouldn’t overwhelm her).
Reading about what happens while she is in school and their attitude towards her makes me angry. I hope that I can help to change all of this in some way because it is just wrong in almost every way.
Feel free to comment.