Gifted Issues Discussion homepage Forums Twice Exceptional Taking Away Accommodations

You all are so wonderful. I am so grateful. Thank you so much. People without childen who are 2e just do not get it. The advice I have gotten here is invaluable. I incorporated pretty much all of it into a response email to the teacher and the IEP team. I pointed out that The entire reason teacher has problems with the implementation of the IEP is because she is actually not even folllowing the IEP correctly. DS is suppose to have a scribe with "multiple sentences" not when he "feels fatigued" or when teacher or someone else "notices fatigue" or when he "asks for help." If an assignment or an assessment has "multiple written sentences" he is to have a scribe. I then went on to add that I am, however, most definitely in favor of making the IEP more specific. I pointed out that back in October, I wanted the accommodation to read, "Provide a scribe for written assignments of more than two sentences." And I said I think if we change the wording it should be changed to something like that - a specific amount of sentences.

I went on to argue how symptoms should not determine the use of accommodations. And that they are basically requiring that he work to the point of failure before he is provided the needed support to allow him to access the curriculum.

I added with regard to the working ahead issue in math, that any work that DS is offered or allowed to do should have the accommodations attached. His work should be accessible to him whether it's "enrichment" or required work. I posed the question "Is there math challenge he can do on the computer that won't cause him to have to write it?" And then I wrote this: "However it works out, he needs to have equal access to the same work that the other kids have access to--without his disability. Please remember, his disability is neuromuscular - it is very physical; and he has a right to enrichment in math despite the fact that he has a neuromuscular disability affecting his hands."

I can't understand why they are doing this. His congenital hypotonia was not in question with the re-eval ... dyslexia and dygraphia were. Why the accommodations for his hypotonia are suddenly on the table I don't know.

YES YES YES!

Also, to the OP, don't know if it has been mentioned but I love the book from Emotions to Advocacy and could be very useful in your situation. Also, if you ever get a chance to attend a Wrightslaw workshop they are great.

So they decided to drop it and simply reinstate the accommodations for which I had pushed and got in October (which is that he will have a scribe). Apparently, my email annoyed them. I dropped DS off late and went into the office with him and the principal was waiting there and asked to have a word with me. He assured me they will go with what I want - to keep his writing accommodations but just wanted to tell me that the teachers are just looking to find and help increase DS' stamina. I said point blank that is not her/their job and she is not qualified to do that. Unless she is a CHOP neurologist and neuromuscular specialist or a qualified OT it is not appropriate for any of them to be doing that. We have diagnoses from neurologists, neuromuscular specialist and various OT evals and diagnoses. That is not teacher's place to be concerned with that - she is to provide a scribe for multiple sentences (tests etc), period. He seemed to be a little surprised/speechless at that - not really in a negative way just as if he hadn't realized that himself or something. He said the tone of my email was not nice enough and didn't have enough platitudes in it (not my first one but my second one). I told him that if they do not want to see my unpleasant side then they should not try to take away my son's accommodations. I told him I am offended that they keep saying the accommodations "enable" my DS's and "shortchange" him. I said to him that having to use the word "disability" with regard to my son was painful and difficult, coming to terms with the fact that his condition could not be "fixed" was even harder for my DH and I and if we could accept that our son has a disability then so could Ms. Teacher. I told him him that I want the remarks and comments and the mindset that this is something that can be "cured" if he is just pushed or if he is not accommodated to stop. It wasn't pretty but I honestly think they will be much more careful and will be much less likely to pull it in the future. I told him if anyone, including him or any teacher, tries to take away my son's writing accommodations (b/c they are really THE MOST important ones to me) they will have a very unpleasant fight on their hands. I could have been nicer but it felt good to be firm and strong and well not, so nice considering I felt like they were sneaky and tried to hurt my DS.

Well done for speaking your mind, I do hope it gives them something to think about not just with your family, but with other families too. I lack the courage myself so I am always impressed when others are able to successfully push back like this.

Good luck with that! How old is your DS? We are in PA in Delaware County.

Keyboarding is another fine motor activity and was harder for DS before he got his vision therapy. He's been playing minecraft on the computer which is slowly helping his keyboarding. I am hoping to get him some keyboard lessons or something within the next - I need to find something that will help him become effective at keyboarding while being fun and not too much pressure at the same time. Becasue as sooon as he is good on the keyboard, I know and entire world of opportunity will open up to hm. he already does several games and such on the computer and does extra math programs on the computer so he is quite familiar with computers so that is good.

Thanks Metis! The school psych did not say he wasn't dysgraphic - she said to me personally (sort of off-the-record I guess) that he may very well be. BUT she can't with his test scores say in her report he has a "disorder of written expression" (because, of course, the laws and such don't use words like dyslexic or dysgraphia ... I suppose that if we simply pretend actual real neurological conditions don't exist then they will go away.) She sees my concern the reversals are inordinate and simply not improving and the gap between his scores is extremely large even though the writing is falling as "average" - it is a low average and the below average is so low that often kids with DS's intelligence don't ever fall that low. She is the one who suggested the new OT place I am going to try specifically for the dysgraphia (new OT place is out-of-the-box stuff, not your traditional handwriting without tears stuff) so I feel like she gets it but technically can only do so much.

My son has, however, been diagnosed with a neuromuscular disability called "congenital hypotonia with hypermobility of the joints (particularly in his hands)" by neurologists and his OT evals dcoument the effects of that on his writing. Oddly, and I am not sure why this is the case, but hypontonia alone only entitled him to a 504... When he started breaking down emotionally last year because the hypontonia wasn't properly accommodated for under the 504 (and because he had a vision disorder also neuromuscular that was undetected at that time), he got an anxiety disorder diagnosis and that is what got us an IEP.

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

One accommodation we used was that our son wasn't required to write multiple sentences. That way, he used the scribe only for testing and just did reduced output on class work. It worked well and was less disruptive to him. At home, he dictated to me for homework.

He is in 7th grade this year, and his ability to produce more written work without becoming exhausted is much better than even a year ago. In fact, he requested that he not use a reader on state testing and use a scribe only on essay questions. The coordinator called to make sure I was ok with the changes. And since the school is the one who stands to lose if he does worse on the SBA testing without more accommodations, I am impressed that their stance is that it is more important to respect my son's request than to pad their chances.

Way to stick to your guns! Hang in there.

Ugh. Why are people like this? It boggles my mind, really. I am sorry that happened to you and your child.

Well, the idea behind many of the supports in an IEP is that those things will be "transitioned" to something less intensive over time-- so that may well be where some of this mindset comes from. The goal is to transition an IEP into a 504 plan by late high school if the student's plans include college.

The way to counter that, though, is to crisply point out that the particular support/accommodation is for a condition/aspect of the disability which is permanent, and without natural mitigating measures appropriate to your child's age, and that you (and your specialist physicians) will let them know when/if anything about that CHANGES. Even so, there are elements of a plan that morph as a child ages into greater ability to manage that disability for him/herself.

Until then... er... yeah.

I find it helpful to wolfishly reply "I don't know what you mean. I was not aware that I was obliged to be obsequious in order for my child to have full access to the same degree as his unaffected peers." That puts it properly ON THEM-- they are expecting you to BEG for what your child is entitled to by law. How ugly and repulsive is THAT? ICKY.