Gifted Issues Discussion homepage Forums Twice Exceptional Taking Away Accommodations

... 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.