So, just wondering... is it common for the school to keep trying to sneak away accommodations? I guess this another trouble that tends to go along with 2e kids?

I had my DS7 re-evaluated for dysgraphia and dyslexia (he has an IEP for Congenital Hypotonia, Anxiety and a vision disorder) and as a result we had another IEP meeting. Some accommodations for executive functioning were added and some accommodations for addressing his strengths were included (just a vague accommodation that he should have enrichment after mastering curriculum - whatever that means). They added some vague accommodations for spelling and phonics, etc. Psych said she could NOT label him dysgraphic in her report because he performed at least averagely on the writing test (I suppose because he performed averagely on WJIII achievement?) But I find this a little confusing because his OT tests are still pretty dismal... He is still two years behind his peers and writing an inordinate amount of reversals. His writing fluency is slow and labored. We had/have good accommodations (scribing in particular) for that because it is/was attributed to his documented disability of hypotonia. I fought pretty hard back at the end of September for those writing accommodations with a lot of help from some great people here. More background info, I have a private neuropsych eval now scheduled for May1. I am hoping a private neuropsych will be able to help us get a formal diagnosis of dysgraphia (if indeed he has that and even though he compensates well he certainly seems to have it and the school psych did agree with me on that) so that I can get it formally on record at school to add strength to the writing accommodations, to help staff understand DS better and to get maybe extra tutoring if there is some particularly helpful for dysgraphia. Also hoping the neuropsych can give us more concrete answers/insight re whether or not ADHD-Inattentive is present or not.

Anyway, we have the IEP meeting and they tried to take away is writing accommodations! They changed many of the ones that called for scribing! For example, DS had a modification that read , "Provide a scribe for multiple written sentences” and that was changed to "Provide a scribe for multiple written sentences when DS requests assistance writing or an adult observes signs of frustration such as multiple erasures." Another accommodation that had read, "assign shortened writing tasks and break into chunks, reducing the amount of written work" was changed from "with each major writing assessment" to "when DS is feeling fatigued." They did the same thing with an accommodation that read, “Break math assignments into shorter pieces and offer breaks daily” to "daily if DS is feeling fatigued." When I push back at the meeting I feel like they gang up on us pulling out writing samples showing how well DS does without a scribe. THEN after they present with all of this proof of how much writing DS is doing, they complain that he has increasingly becoming very irritable over the last month or so and behaviors are coming out. YET amazingly they do not see the relationship between the increased writing and DS's emotional state even though he developed an anxiety disorder last year and had a breakdown because his disability wasn't properly accommodated for last year!!!! I have noticed his becoming increasingly more miserable and starting to hate school, pretend to be sick to get out of school, seeming very fatigued, etc. at home. When I argued that the increased writing is what is causing the irritability they act like I am nuts.

Anyway, I didn't bother to fight at the IEP meeting. I tried but looks started and they gang up on me and I get tired of feeling like I am the only one who sees what is happeneing with DS. It's like talking to brick wall talking to his teacher about this. If he is miserable outside of writing activities then she insists his being miserable can't possibly be related increased wiring. Uh, okay. They throw around phrases like that I "short-change" DS and "enable" his disability.

I have taken on the method often employed by DH and my inlaws, which is not me - but I do see the beauty in it. I smile, nod, act like I see their point and back dwon from the confrontation. Then, I went home and wrote to them basically saying we refuse to sign the IEP until the accommodations are put back. I wrote yet another well-laid argument in an email substantiating why the accommodations are necessary. Hopefully, I won't have to argue as much again - I just had these arguments with them 5 months ago! Do they think his hypotonia has suddenly been cured in 5 months??? Seriously???? I am really really disappointed in them. It just seemed sneaky and underhanded of them.

" Psych said she could NOT label him dysgraphic in her report because he performed at least averagely on the writing test (I suppose because he performed averagely on WJIII achievement?)"

Marysthere, I know you posted on my other thread that you DS seemed similar to mine. This something else they have in common! We have our first IEP team meeting Friday, the school Psychologist recommended keyboarding/laptop. I am hoping to get them to provide this accommodation. I see your in Pennsylvania too.

Was it the school psych who said he wasn't dysgraphic?

Most school psychologists aren't certified to practice medicine (diagnosing disease), instead they are certified by the Department of Education. If you have a diagnosis from a medical professional, they can't dispute that (although they might try!).

If your son has been diagnosed with a disability (dysgraphia), and the district is not respecting his right to accommodations, gently threaten to file a complaint with the Office of Civil Rights. This threatens all the school's federal funding, and school employees tend to take you a bit more seriously then.

I'd wait to pull out the big guns until you have tried everything else though.
Try not to burn any bridges.

Interesting. I didn't know that a physical disorder could be enabled by exogenous behaviour. So thoughtful of the administrators to weigh in with their *ahem* qualified medical opinions.

From where I sit, it looks like the only enabling you're doing is the kind that makes a suitable learning environment available.

So I wrote back to the school singing their praises and then stating I want the accommodations to stay the way they were in ocotober. And I received this response from the teacher:

"Before we make the changes, I have a few questions/concerns so that I can properly implement the IEP:

Writing: I need some clarification as to what this looks like in the classroom so that I can follow it properly. DS is offered writing assistance frequently throughout the day across all subject areas. He will often times decline, but other times accepts. Am I to put an actual limit on how much he writes and not allow him to write more? If not, what criteria should I use if it isn't observation or him accepting help offered? I agree that we cannot always rely on him to ask, but it should be included that he receives assistance upon request. There have been no increased demands on the amount of physical writing placed on him, but I do notice that he writes more (compared to October, which makes sense) before accepting offered help which is offered frequently during a writing activity. This has continued through this past week where his behavior at school and home has significantly improved from the past few weeks, so I want to be sure before any limitations are placed upon him we have the correct correlation.

As for math, the curriculum I am piloting is already broken into segments. DS often works ahead and asks for the challenge activity. I want to make sure that the wording on the IEP doesn't conflict with letting me to allow him do so when my assessment through observation indicates that it would be appropriate. "if DS is feeling fatigued" gives the flexibility to allow him to work ahead and/or do challenge activities when appropriate. Perhaps there is a different way to word it? How about "DS will be offered writing assistance and breaks during math or activities which require sustained writing."?"

Actually back in October I wanted a specific number of sentences to be the limitation...I think I wanted something like "provide a scribe for more than three sentences" and they gave me crap about that (they are the ones who seem to like the vagueness not me!!!)

The dysgraphia is not formally diagnosed BUT the hypontonia and hypermobility (specifically in hands) jhas been amnd that is a physical neuromuscular disease that causes muscle weakness in hands.

ANY advice on wording would be greatly appreciated!

Gotta run but willl be back!

Oh and the reason he is somewhat better this past week was because I stopped making him do homework particularly writing homework and started him on an herbal supplement for fatigue! (Rhiodola)... which I told her about.

I'm guessing that it is a money issue. They don't want to have to pay a para or whoever to be available to scribe for your son. If they subtly make it harder and then he no longer bothers to access the accommodation, voila! he obviously doesn't need it so they can eliminate that staffing position. Stick to your guns.

As to that "enabling his disability" comment, I give you credit for keeping your cool. Your son has a physical disability that limits his ability to write. That crap tends to bring out my sarcasm, i.e. do you tell the parents of kids who wear glasses that they are enabling their kid's vision disorder or the parent of a kid in a wheelchair that they are enabling their kid's mobility disability?

Sorry I think that we cross-posted. Your teacher seems to be handling his current accommodations in a reasonable fashion, why do they see a need to change something that seems to be working? How would changing language change how the teacher interacts? When you ask for different language, I'm still unclear what changes the team is trying to accomplish.

this.

... and.... the answer, by the way, would be "YES, in fact, sometimes they DO."

(As incredible as this sounds, it's not just an issue for disorders with neurological underpinnings.)

Accommodations for hidden disabilities of all kinds are all-too-frequently challenged. Sometimes in mind-bogglingly callous ways. The phrase "real world" pretty much makes my blood pressure tick up four notches all by itself at this point, if that is any indication.

I wish I could say this type of thing never happened to us, but it did. Over and over again - after fighting like crazy to get our ds an IEP, we were still constantly fighting to keep his accommodations while he was in his first elementary school.

I also don't like to fight and don't enjoy confrontation, but my personality can be very stubborn and I'm prone to getting angry and fighting back rather than sitting back and just letting a meeting happen... so I had to work at purposely being calm, letting the school team say whatever they wanted to say, then gently but repeatedly over and over again explain (simply and briefly) that ds needed ______ because he was dysgraphic. These were things that happened to us in meetings, and how I chose to respond:

When the school tried to pull out writing samples that proved that he was on par for grade level, I pulled out a sample of his current schoolwork and samples of his handwriting from home that were representative of his true handwriting ability. I didn't argue grade level, I showed the impact of dysgraphia.

When the school staff insisted that dysgraphia (if it did exist) wasn't impacting ds in the classroom, I showed the split between his WJ-III Achievement Scores - if you plot the subtest scores on the y-axis vs type of subtest on the x-axis, my ds' subtests split into three groups - one high-scoring group which matches his IQ level, one group that is around 30 percentile points lower, and another group that is significantly lower than that. The difference between the groups is in the type of response. The high scores are subtests that have oral responses. The middle scores are subtests that have written responses but are untimed. The low scores are subtests that have written responses and are also timed. That one graph was something the school couldn't argue. (Note: they still tried to not give accommodations, but the graph usually shut down the argument that handwriting didn't impact ds).

When the school showed us a sample of ds' timed handwriting and noted how neat it was and how he had done it along with the rest of the class and that his was not the fastest it also wasn't the slowest, we requested that the school OT tell us what grade level the handwriting speed corresponded to. The OT was resistant at first, claimed there were many different studies with different ranges of words/letters/minute vs grade level, so I gently agreed and said I understood it wasn't something they could give us an absolute answer on, but could she please count the letters per minute anyway. That got us an answer - ds' speed was several grades below his grade level.

When the school staff tried to tell us how he was "neither the best in class or the worst in class" we reminded them that the meeting wasn't about everyone else in class, we were meeting to discuss ds' individual education needs.

When the school staff tried to tell us ds needed to request his accommodations (this is really a hot button for me - I'll explain more below), we just said no, he needs the accommodations, give him the accommodations. If they argued that he needed to learn to advocate for himself, we countered "teach him to advocate for himself in an area that isn't impacted by his disability". If they argued that he needed to remind them of his accommodations we gently reminded him that he didn't, it was the school's responsibility to accommodate the disability, not ds' responsibility to remind the school of their responsibility.

When the school staff tried to tell us ds' refusal to write or inability to produce more writing was possibly due to 1800 other reasons *other* than dysgraphia we responded (based on the situation) with either "well then, will the school evaulate ds for ___", or "even if those possibilities are occurring, that doesn't doesn't take away ds' dysgraphia".

It's good you've followed up with an email - we found that writing emails after meetings where we restated what we heard the school staff say, followed by our question re why that wasn't valid etc, was very helpful in making a lot of the school staff's comments from meetings disappear into thin air - they didn't want any of what they'd said actually in writing anywhere.

Having a diagnosis and report from a private neuropsych will also help. When school staff tried to tell us there was nothing wrong with ds' ability to use handwriting (or whatever was in the neuropsych's report) I replied "So you are disagreeing with an experienced respected pediatric neuropsychologist's diagnosis?"

Soooo... the replies that I listed above didn't necessarily get us everything we were requesting in ds' IEP but they did absolutely shut down the script the school staff was using to argue that ds didn't need accommodations and services. And I do believe the meetings and arguments on the part of the school were carefully scripted. Prior to moving into the IEP eligibility process, ds had a teacher who clearly cared about him and was obviously very concerned about his performance on writing tasks. Once ds was "in the pipeline" for eligibility and we were having team meetings, his teacher morphed into a person who was telling us how wonderfully ds was doing, how his handwriting was not a problem etc.

Re your school psych not being able to put dysgraphia on her report - I would worry about that for now. Focus on getting the private diagnosis (and even that might not say "dysgraphia" - our ds' diagnosis from his neuropsych report is "Developmental Coordination Disorder" - but the neuropsych included a paragraph in her report specifically addressing ds' inability to use handwriting to communicate his knowledge). If you don't have them, be sure to request the full set of subtest scores from his school psych's WJ-III testing - because even though the school psych hasn't written a diagnostic report for you, there are most likely obvious clues that *you* can use to point to in future meetings to show the impact of his dysgraphia. You could try creating a chart from the achievement scores like I mentioned above, and you can also look for large discrepancies in subtest scores on the cognitive abilities subtests and if there are low scores in any area, relate those back to the skill being tested and does it tie into your ds' areas of challenge.

I also mentioned above how mad and frustrated I get at the words "student will request accommodation" - our school tried again and again to make our ds do this, and it just wasn't going to happen. It wasn't even worded this way in his actual IEP, but we were told over and over again at meetings that ds wasn't given an accommodation for (whatever) because he didn't ask for it, and he needed to ask for it. Now that ds is older, he is able to tell us that he was simply too young, too confused, and too intimidated by adults when he was in early elementary to ask for accommodations. He also didn't really want his accommodations at that point because they made him look and feel different from the other students. So it was just a horrible situation.

Hmmm... I suspect it's kinda obvious from the long length of my reply that I haven't fully recovered from ds' elementary school experience yet. My cynical note (and I sincerely hope this isn't going to be the case for you and your ds) is that - all those well-thought-out replies I came up with did help us advocate successfully for a *written* document, but they didn't ultimately result in our ds getting what he needed in the classroom, and we ultimately left the school where we were having to do so much extended and continuous advocating. I didn't realize until we left that other schools weren't so adversarial.

Let us know what response you get from your emails - and hang in there!

polarbear

ps - in the thick of things like this at school, it also always helped me to remember that what our ds needed, he needed for life, not just for school.

Oops! It wrote such a long reply that I hadn't read most of the new replies above mine... so going back to read!

marytheres, I read the teacher's reply, and will post again when I've had time to think through what I might ask/do/say in reply to it.

In the meantime for those of you who asked would a school tell a child who can't see well to now wear there glasses - re what mon wrote:


Things like this absolutely happened to our dd who has severe allergies - in spite of having documented diagnoses from her doctors we were constantly told things like "after we see this happen we can do ____". There was an amendment made to the ADA in, I think, 2008 (not sure of the date) that specifically states a person with a disability can't be denied accommodations because it *might* happen but hasn't happened yet. There might be something in the actual laws surrounding IDEA and the ADA (two separate things) that address whether or not a student can be required to request accommodations. Knowing whether or not it's specifically been addressed in the legal docs or addressed in a court case isn't something you'd typically want to bring up in a meeting unless you're backed into a corner by the school, but *knowing* it can help with advocating.

polarbear

Off-topic, but I'll never forget the undignified SNORT that came out of our ordinarily placid, extremely well-trained allergist's mouth when I noted once that "continuous" impairment was sometimes a barrier with schools since "breathing" impairment wasn't a continuous limitation, nor was cardiac arrest. (Ergo, self-care was our preferred angle for maintaining 504 status, and still is, incidentally.)

He rolled his eyes, snorted, and said "Uh-- does 'not breathing' or 'cardiac arrest' really NEED to be continuous to pose a problem?" (Said in a "are there REALLY people this stupid in charge of children?" tone.)

I know, rather black humor, that, but it still makes me laugh when I think about it. Pithy allergist. We like him very much. LOL.

Oh Howler, I totally love your allergists' black humor! I think I've mentioned it several times here before, but fwiw, I'll mention it again. My all-time favorite (not!) moment in advocating at school was when we backed our school's 504 coordinator into saying, out loud "Yes, we can provide your child with a 504 if she's dead." Totally clueless, didn't even realize what she'd said. Background leading up to that moment, she was denying our child a 504 or any type of acknowledged accommodation that would have avoided having dd exposed to a specific allergen in her classroom that she is IgE allergic to because she hadn't *yet* had an anaphylactic reaction to it (because she'd successfully avoided exposure). For anyone reading who hasn't had experience with anaphylaxis, it's multiple system reaction to an allergen which can result in cardiac arrest, inability to breathe, and potentially death.

polarbear

!!! I hope everyone else round the table did, at any rate!

Sadly we had the same go-around but not in an IEP meeting - it was in conversations trying to explain to the school that they needed to actually follow the IEP - the teacher couldn't just do what she wanted. A few key phrases I used that seemed to be effective:

- You are setting her up for failure. By telling her to "do as much as you can yourself before you ask for help" you are requiring that she work to the point of failure before she is provided the needed support to allow her to access the curriculum.

- No, it is not up to her to have to ask for help. It is up to the adults to be the adults and determine in advance how to support her so she has the ability to access the curriculum.

- DD is in second grade - she does not want to stick out as being different. It is totally inappropriate to require that she raise her hand and point out her differences in front of the rest of the class in order to get the supports she needs and is entitled to in order to access the curriculum.

- The teacher doesn't get it. I realize that she thinks she is helping DD by encouraging her to become more independent. But it doesn't work that way. She is entitled to these accommodations in order to be able to fully access the curriculum. [followed by an explanation of how the amount of mental energy needed to focus on hand writing takes away from her ability to actually focus on the content of what she is writing]

I followed all of this up by stating "Mark my words - all the progress we have made in the past few months is all being undone. If you insist on setting her up for failure instead of helping her to succeed DD is going to totally lose it sometime in the next few weeks." That was on a Tuesday. On Friday DD had a total meltdown. She just stood in the corner crying and repeating over and over "Just leave me alone" anytime one of her safe people approached her to try to calm her down. The following week we met with the superintendent. She asked very pointed questions about what was required by the IEP vs what the classroom teacher was actually doing and was not at all pleased by what she was hearing. A few days later the classroom teacher was ordered to "follow the IEP to the letter." I guess our arguments were effective.

We have an IEP meeting next week to *finally* discuss implementing the recommendations of the Assistive Technology evaluation. Part of me is very concerned that they will go on the offensive to try to undo some of what we have in place. I am prepared to show the work DD produces with and without the support of her para. There is no comparison - the work speaks for itself. So be sure to keep lots and lots of good examples. For DD left to write on her own is a few illegible words. When scribed she writes 3 page stories in response to similar prompts...

With a hidden disability, needing to ASK for the accommodation is bad for two reasons:

a) it creates a barrier which does not exist for other unaffected peers (ergo, reducing the efficacy of said accommodation), and

b) it OUTS the disability among the child's peers. That is a BIG no-no when it comes to a hidden disability. If it's medical in nature, our kids have a right to privacy. If it isn't, they still have a right to dignity.

Inclusion isn't just about the letter of the law, but also the spirit of it, which is about making sure that "the children in this classroom/club/activity" means all of "the children." Not just the non-disabled ones.

I just suffered through our first IEP meeting for my soon to be 3-year old. The Special Ed director has only seen me twice before (regarding DS4.5) and we exchanged couple emails back in the fall and she pretty much has me figured out (and I have to say quite well! lol). As soon as we all set down, she told the rest of the team that they can keep it short and skip the boring stuff because "mom" probably already knows what she wants anyways ... and she also mentioned to the others (who were the same evaluators that did his initial special ed evaluation) that a lot of what they saw and thought was related to his high functioning autism was probably case of stubbornness and strong-will because he seems to take after his mom! I walked out of there getting about 80% of what I wanted (I basically asked for LESS than what they wanted to offer) and the remaining 20% is stuff I backed down on and let them win some. I think have a good ongoing relationship at this point.

Unfortunately, we don't see eye to eye when it comes to allergies and the school not following through. When I mentioned my concerns regarding next year (DS4.5 should be off to Kindergarten in the fall), she said something along the lines of "oh, don't worry! We have so many kids with allergies, we have it under control. We even have allergen sniffing dogs!" ... hmm, so where was this dog and things under control when on Valentine's day my severely egg-allergic kid came home with candy bars that contain eggs in his backpack? Or who had things under control when the class had a substitute who said "one or two wouldn't hurt you" when my son wanted some of the forbidden crackers some of the other kids had (he's aside from the egg also gluten-free / casein free / soy free and the crackers had it all) ... oh, or when I informed the teacher about his new allergy to cold when he breaks out in hives really badly and I let her know we need to make sure he's safe from being exposed to cold, freezing temperatures, etc. ... and he came home all excited because he played with ICE in their sensory table? (hello giant hives onset for days!) ... and that's the kid that has FEWER issues! I don't even want to think about what will come when the younger one actually goes to full time grade school! At this point his fine motor skills are seriously lacking and I doubt he'll be able to catch up well enough to blend in with the other kids. I am pretty sure he'll need some kind of accommodation for writing and possibly other activities. But at this point, I just keep thinking "happy thoughts" ... unschooling / homeschooling the next few years and figuring things out later.

Oh, I also got an IEP progress report couple days ago. There's all kinds of progress noted on there in terms of DS's speech but ZERO notes on his other issues that he's been receiving OT consult for. All I ever hear is "oh, he's doing great!" ... doesn't give us much room for improvement since we don't know what to work on.

huh ... just thought of another "pearl" from last week's IEP ... when I asked if I could be there with DS for the speech therapy he'll be coming to school for because otherwise he will not cooperate at all and will be miserable the whole session ... the special ed director said "oh, don't worry. We are used to kid's crying!" ... say WHAT? And you want me to trust you with my child??? I know she didn't mean it the way it sounded ... but I also know what she meant and I do NOT like it. So, we shall see how far we get with the therapy before we may reach out for outside therapy rather than just going through school.

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.

I truly believe that my DS will be much more independent in time with computers/laptop/ect (this is what happened with my DH in around the 4th grade). Once he can type well I think people/staff will feel better that he is independent and not being coddled or short-changed or whatever. The school psych put this in her report, God bless her, that he will most likely transition to using accommodations such as a computer.

As an aside, I got a folder sent home of DS's assessments (tests) - math and reading(in prep for progress reports being issued this friday). He did really well - "Strongly in place" (highest grade you can get) and "highly proficient" in all of his tests/assessments. Even his Diebels were high, and reading assessments were high, etc.) He did phenomenally in math. He either only got one wrong (sometimes because he went the wrong way in an equation LOL it's like he was Japanese, or whatever culture it is that goes from right to left, in a former life LOL) or got all of the questions right. Most of the tests were scribed. The ones he wrote himself all of his numbers were reversed. All of them. But he still got the operations correct.

Instead of "enable" or "short change" I got "she is capable of more than you are giving her credit for." Ugghh. A few possible wording items to consider:

- Rather than an amount of writing that would trigger para support we got "DD will do 10% of the written output and para will do 90%." We have never counted the number of words in a given day but it helped with our argument that requiring her to ask for help was inappropriate.

- DD's psychologist suggested telling her "this is how YOU learn best" in order to address the not wanting to appear different after being expected to request help. I like how first they require these kids to ask for the help they are supposed to receive and then try to claim that since they are doing more and more on their own the need for support must not really be there after all. Gee why don't I wait to pay my tax bill until the school district runs out of money and asks for it. Gee - you went so many months not needing my money I guess that means you can function independently and don't need the support I am required to provide. Huh? What? I am supposed to just pay my taxes without you showing that you need the support and specifically requesting that I provide it? Really? I didn't know it was supposed to work that way...

- The failure to provide the required scribe led to DD being penalized for her disability. Amazingly she was earning 100% on every weekly spelling test while they were being scribed. When the teacher started having her write it herself she started missing several words each week. I complained that she was being required to work through 2 levels of learning disability (dyslexia AND dysgraphia) to do this. Once the teacher marked her wrong for spelling "ran" as "a-r-n" I was able to effectively argue that she was being penalized for her disability. No one could disagree that when sounding the word out there was NO WAY that DD would say "rr" "rr" "rr" = "A". It HAD to be her dyslexia causing her to write the word as a reversal. It was up to them to try to prove that this wasn't the case. Amazing! Once I made this argument directly to the superintendent all hand written spelling tests came to an end. Also amazing - having them scribed again has meant a return to 100% on the weekly tests. Go figure...

- If your IEP requires the accommodation it is required. Period. In our case we had to involve both the superintendent and the state Dept of Ed to be taken seriously. We have also made clear that we are ready, willing and able to pursue a civil rights complaint. The classroom teacher continues to violate the IEP but other members of the team are now VERY quick to correct the problem when we bring it to them.

"When the school staff insisted that dysgraphia (if it did exist) wasn't impacting ds in the classroom, I showed the split between his WJ-III Achievement Scores - if you plot the subtest scores on the y-axis vs type of subtest on the x-axis, my ds' subtests split into three groups - one high-scoring group which matches his IQ level, one group that is around 30 percentile points lower, and another group that is significantly lower than that. The difference between the groups is in the type of response. The high scores are subtests that have oral responses. The middle scores are subtests that have written responses but are untimed. The low scores are subtests that have written responses and are also timed. That one graph was something the school couldn't argue. (Note: they still tried to not give accommodations, but the graph usually shut down the argument that handwriting didn't impact ds)."

I haven't figure out the quote boxes, yet, but this is from polarbear's page 1 response.

Polarbear could you point me to where I can find the WJ-III information for which subtests fall into which catagories? The chart is a brilliant idea and since I have all of DS7's subtests I'd like to borrow the idea for future school meetings!

Mary'sthere, I love how you schooled the school - I hope it helps.

Yes! Please! This would be good info for me too.

Marytheres, I applaud you for maintaining a professional, facts-based tone when the school was clearly personalizing the issue and failing in its core responsibilities. That the principal and team have the gall to presume to administer medical advice as administrators is astonishing. They are so clearly overreaching their expertise and taking a CYA approach to obfuscate their negligence.

I still can't get over their condescending to lecture you about tone, as if you're in a personal relationship and owe them the courtesy of sugar coated language after being blatantly called a liar. That's just hypocritical bull. I like to think I would have been as collected as you, though it's mighty unlikely.

I'm not the parent of a 2E child, but it seems plain to me that a medically necessary accommodation should neither be a source of contention nor parental guilt, as the school seems to believe.

Kudos to you. I'm excited to hear about your son's ongoing success. Maybe I should send the principal some salt to make eating his hat more palatable.