Gifted Issues Discussion homepage Forums Twice Exceptional ltr to IEP team modifying (feedback appreciated!)

Yes! thank you! It is important to have the semantics right! You all are invaluable!

Thank you so much, Polarbear. So sad and frustrating we are always have to work so hard advocating for our children...

I agree that I was mixing statutes somewhat. For us, DD is showing growth on state assessments with the extra time and even had high growth on her writing (yay!). The principal pointed this out as evidence that her current 504 accommodations are sufficient to provide her access to the curriculum. This reminded me of the appropriate versus best argument.

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.

Sounds good. I hope that you get results.

So, that got me a response! I got an email back saying:

Dear [marytheres],

We are all on the same page to meet [DS's] needs and have him be successful in first grade while also encouraging independence. If you feel the need to continue our conversation please feel free to call me. We will incorporate the suggested items that we discussed yesterday and give you the opportunity to review before finalizing the iep. I hope [other DS] is feeling better.

Thank you again,
[assist. dir.]

I am not sure that means I get what I want or what! I think it does! But I guess we will see when I get the new draft.

Thanl you all so much for all of your help, advice and support. I couldn't have done it without you! You all are wonderful! Thank you, Thank you, thank you!

Just a few minutes ago, I was reminded of how much we really need this. DS was doing his homework (number bonds) at the same rattling off multiplication tables (just showing off to me that he has picked up how to multiply by 5 - which is kinda of natural I suppose since he does know how to count by 5) Anyway, he obviously bright and has a strong grasp of math but when I looked at his homework - 50% of the numbers were backwards - his 2s were backwards and looked like 5s ... he had already erased several times.

Thank you all! We got the accommodations! Not exactly as specific as I had written but very close... Instead of putting down a specific number of words (I had scribe provided "for more than two sentences") they put provide a scribe when writing "multiple sentences." I am okay with that as I figure "multiple" means at least over three so I think that is okay. Also, they left the my math fluency specifics - i.e., he's to do it orally!

Now that I think he will be properly accommodated in school, I am on to getting him looked at at the CHOP neuromuscular clinic. He has hypontonia, which, while mild, isn't going away and strabismus - both are neuromuscular conditions. Why? I think we need to find out. He also grinds his teeth a lot in his sleep (haven't noticed it much while he awake). I also have noticed he does tend to lose skills. Examples: he learned to ride a bike w/out training wheels in the fall that he turned 4, a bit over six months later - by around age 4 3/4 (that summer after not riding the bike all winter) he forgot how. He did master it again at 5 years old but I thought that odd (but maybe just the hypotonia). He hasn't lost it since thank God. Then, same with swimming... last summer (before the one just past) he was swimming, this past summer he had completely forgotten how. By the end of this past summer he still never got back up to where he was the summer before. Again - hypotonia? Vision? or something else? Also, reading - he learned to read at the end of preschool and forgot it all over the summer entering kindy. He seems to backslide a lot with reading (which really really upsets me and makes me look at times like I exaggerate his level, I feel like). Again, could be just the strabismus but maybe not. He's been doing great and has been getting VT since June and I thought he was soaring. AND, then, just this past week I feel like I noticed a regression with the reading! Competely freaks me out. Yet his intelligence seems always increasing and very high (high vocab and seems to NEVER forget words and their meaning, doesn't forget his math, or other things he learns like science stuff and such. (As you may remember is IQ is quite high). But the certain "skills" he seems to lose.. he DOES regain them seemingly permanently but the lose and regression worry me - does that happen normally?

Anyway... so worried and just rambling..

I know this is late but I wanted to tell you that my son had the same problem with 2s and 5s and it wasn't a matter of not knowing how to write them. It just happened sometimes and it happened more often when he was younger. My son described it as a glitch. It was so annoying that it was one of the reasons he hated math even though he was good at it. The only way we could get through math was if I acted as his scribe after he did only a few problems. I wish that I hadn't tried to force him to do more. The reason I tried to force him to write more problems and show his work was because I was afraid something might happen to me and he would have to go back to a bad public school that would not allow any accommodations. I thought if I just pushed him enough he would be able to do more, that he would somehow build up strength and endurance just by doing more, but his hands always hurt after five minutes and I got really stressed about it because I could see it wasn't a simple matter of having him practice writing numbers. It was a physical issue that he had no control over. He could feel my stress and he already felt bad enough about the difficulties. I know I am the reason he hates math.

Fast forward to 9th grade algebra and factoring quadratics. I do well to get him to write out one problem. He will tell me exactly what to write, after he tells me how much he hates math and tries to talk me into letting him do science or economics or anything else, but he can easily do the math if the writing issue is accommodated. When I have him write out a problem he will only do it on a whiteboard so that he can quickly erase only what he needs to and reuse some of he has written to cut down on the amount of writing. I am hoping that he will eventually be able to CLEP out of college algebra and be done with math. I also hope they will let him use a whiteboard so that he can do math that he knows how to do but has trouble doing because of a physical disability that affects the amount of writing he can do.

Lori,
Maybe an equation editor on the computer could help?

Here is a free one:
OpenOffice Math