So, because I haven't heard form her and because it is clear that I am going to get resistance on the issue, I wrote her a clarifying email. I figure I better step up the advocating in the hopes that we can get this worked out quickly. Plus I like documenting in writing my requests and concerns.

Anyway, I used what was posted here to help (mostly by MON - thank you so much). You all are so awesome - so helpful! Thank you so much.

Okay this is what I wrote (hope it's okay):

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Dear [ass. dir. of special ed.],

I am sorry our conversation had to end so abruptly. [DS2] has a cold so he isn't being very patient today! I just wanted to follow up with an email for a bit more clarification on my part.

I suspect that perhaps we are all losing sight of the real issue with [DS], which is that he has a disability (albeit an invisible one but a disability nonetheless). The accommodations for congenital hypotonia are not to get good grades or even get him up to grade level. They are necessary to minimize the impact of the disability of hypotonia.

I realize that when looking at an IEP, there's the grade level standard and everything is designed to get a student to grade level. But when looking at ADA/504, which applies to the disabled, and not just the 'below-grade-level-disabled,' the standards are different and the student is protected from discrimination. This means that the student needs equal access to the curriculum. Basically, if a school makes a student write when he has a writing disability, that is not equal access. It's kind-of like saying that a parapelegic IS able to move around the classroom by crawling so why let him use his wheelchair? Never mind the effort expended and the calluses and sores it causes, or his limited vantage point from the floor.

[DS] has been diagnosed by a neurologist with a condition called benign congenital hypotonia. This is a disability that is not ever really "cured" and one that specifically affects fine motor skills, particularly writing. (It also affects gross motor skills.) [DS's] occupational therapy evaluations (last one done just two months ago) have consistently documented that he is almost two years delayed in fine motor skills and writing when compared to his peers. Thus, when [DS] is required to write, it uses up substantial brainpower and energy that could be used to attend to the question, to think up answers, think up good story lines, etc. He takes so much more time and energy (both physical and mental) than his peers to accomplish just basic writing tasks. Both his disability and his delays is are well-documented. If you would find it helpful to have copies of his OT evaluations and reports as well as the neurologist's diagnosis, I can provide those copies for you.

In [DS's] case, I think we are looking at a continuum of growth. I think generally students with this type of disability move from scribe and oral at a young age to eventually typing on their own or using dictation software so that they are independent. [DS] will make that transition and will develop those skills eventually. I think we need to view these accommodations as accommodations that grow with him rather than supports and education that are supposed to get him up to grade level and then be dropped or that need not be implemented because he is doing so well despite his disability. Honestly, it is my sincere belief that lack of awareness and accommodation for his hypotonia (and his vision condition) are what led to his breakdown last year.

I hope this helps. Thanks.
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I cc'd everyone on the team.