I'm still unclear what changes the team is trying to accomplish.
Exactly. Well, it seemed clear to me that they are slowly and sytematically watering-down the accomodations and trying to get rid of them entirely. That is what I see happening and what I see as their goal and what they are trying to accomplish. Whether it is because of money or because a higher up is making them the "bad guys" and telling them to push for this or whether it is because they are so arrogant that they really think they they know best about congenital hypotonia and how to treat it I am not sure. Personally, I think they do not believe or understand that congenital hypotonia is a real disease or that DS really has it and they believe that I simply "enable" (enable what? laziness? ignorance? the disbaility?) DS by insisting he get this accommodation. I think they are trying to prove DS doesn't need or deserve this accommodation because they think it is not good for him and it "short-changes" him not to be forced to write like the neurotypical kids.
One of the hot-button accommodations is the 'provide a scribe for assignments and assessments that involve multiple written sentences.' This is the accommodation. Even though the accommodation simply says "provide a scribe for multiple wrritten sentences" - the regular teacher and, to a somewhat lesser degree, the spec ed support teacher have all year been making noises that they actually only scribe when DS requests it or accepts an offer and he goes longer and longer and does more and more without a scribe (they say this thinking this will makey me happy but as those who have children with similar disabilities understand why my stomach drops when I hear this. And I think that 'oh that explains why he is so irritable and sad).
When I express any concern that he is writing too much, they insist that they "offer scribing to DS daily across all subject areas daily and sometimes he accepts and sometimes he declines." They talk all about the different ways they see fatigue in him and now "know when he REALLY NEEDS the accommodation because giving the accommodation prior to outward and obvious signs of fatigue is "short-changing him." (And they wonder why my tone is getting a little harsh!) They 'push him to do more to increase his stamina' apparently right before breaks and recess so that he can rest (and then, I kid you not, then, incredibly, they wonder aloud at the meeting why he has been so nasty and irritable and disrespectful to the lunch ladies and during recess the past month or so!!! "Oh," they conclude, "he needs more social skills group!" He doesn't need social skills group he needs his writing accomodations you moron!) None of this is what they are suppose to be doing, they are simply suppose to be supplying the scribe period. But they think "their way" is "the right way." Because, apparently, two teachers who never have had any education or training in neurology can cure a neuromuscular disease that the doctors at CHOP and Dupont have been unable to cure. So, basically, for whatever reason, I believe the two teachers (both have degrees in special ed) feel that they should dictate the accommodation and that the accommodations should only be given when DS asks or feels fatigued and frustrated.
I have NEVER seen DS get upset about having a scribe - he hates writing because it is physically painful and hard for him... I highly doubt that if the teacher does it in a very matter of fact manner without shaming or insulting him or making him feel 'stupid' that DS will fightt the accommodation in any way. He is accpeting that he has a disability and he is looking at like "the gift of dyslexia" - that is sort of a "gift" becasue it's part and parcel of his creativity and the way he thinks differently, ect. Also his dad has it (and very liekly dysgraphia as well) and he really admires how intelligent DH is and DH always says he needed the accommodations when he was in school and never got them and the DS is so much luckier to get sccommodations.
With the last email and discussion, I finally just said it (someone had to) - i.e., the two teachers, however wonderful they are as teachers, are not neurologists or neuromuscular specialists, they are not trained in neurology or occupational therapy and they can not "cure" or "treat" a neuromuscular disease that the doctors at CHOP and Dupont have been unable to cure. DS routinely sees OTs neurologists, neuromuscular specialists and now we are adding a connective tissue specialist and a chiro, a neuropsychologist and a new OT. If one of these people has a cure or a treatment for DS's hypotonia, I will be right on it! That is the job of those specialists and me! Not the teachers' job. The teachers are to provide him accommodations so that he can access the curriculum and teach him. Period. Provide a scribe period.
Grrrrr
