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

Hi all. Me again. Trying to get this done by Monday. Sorry to keep bothering everyone!

I drafted the following letter to the IEP team regarding modifying the vague accommodations in DS' IEP. This is just a draft (and I will be adding more to regarding jumping through the hoops to get district to cover/provide vision therapy but i thought I'd just burden you all with this part as this is the part with which I really need some help. Let me know what you think, please! And special thanks to Polarbear, as I lifted a lot of it from one of her posts! Here it is:

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It was a pleasure meeting with all of you on Friday. DH and I are so impressed with what an amazing and dedicated group of professionals we have at (Elementary School name} and in the [School District name]! We feel so very fortunate to have such a dedicated team working with DS.

As I mentioned at the meeting, we are, however, uncomfortable with the way just a few of the accommodations are worded presently. Specifically, the accommodation listed under the section titled "Participation in State and Local Assessments" on page 13 in IEP. This accommodation currently reads as follows:

"Student will participate in local assessments with the following accommodations: - Schedule extended time, provide opportunities for breaks and movement, chunk into smaller segments, monitor the need for a scribe, consider alternate forms of assessment such as oral response, consider reducing the number of responses required."

While we certainly see the positives of leaving some flexibility in the document, DH and I are concerned about the practical problems that could arise when attempting to implement accommodations so vague. We may have a teacher and assistants who are doing the "right" thing and finding the right “balance” now, but what about next year? What happens when a substitute is in the classroom? We are concerned that letting DS use handwriting for an extended written response until he gets tired would trigger anxiety and cause a negative impact on the entire test. I also think that putting the burden on DS to ask for an accommodation, particularly during a testing situation, is not fair and runs the risk that the accommodation will not be given. Although the IEP does not state "student must ask," DS is somewhat being put into that position as the accomodation is written currently - if he gets tired while writing and a teacher or test monitor does not notice, he has to ask for his accommodations. While we realize that this is the first time we are drafting an IEP for DS and, consequently, we are all trying to figure out exactly what he needs and finding that “balance” about which you spoke at the meeting, state/local standardized testing time is not the time to experiment with finding a balance; rather, it is about allowing DS, while using appropriate accommodations, to demonstrate his knowledge and true abilities without the interference from his disabilities.

Therefore, we propose modifying said accommodation to read as follows:

"Student will participate in local assessments with the following accommodations:
- Schedule extended time (at least time and a half), provide opportunities for breaks and movement, chunk into smaller segments, use test formats with reduced written output formats (e.g. multiple choice, matching) to accommodate for slow writing fluency, provide a scribe or provide oral response as an alternate forms of assessment for any assessment that may require written answers of more than five words, and , consider reducing the number of responses required."


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Certainly not an expert here so take this with a grain of salt. I think your fourth paragraph explains and justfies too much. Maybe just state "Flexibility can work in many cases. We would like the accommodations to be more specific". Or, just skip that altogether and go from the current wording to your suggestion (and leave out the "therefore"). I'm assuming that they already know your concerns, right?

Hope this helps.

Thank you for your response, Petunia! Hmmm... I hear you. On the one hand I guess it's too verbose but I just like (actually feel almost compelled) to have my concerns memoralized and clearly spelled out to everyone. I did express them at the meeting but am unsure if I did so well enough. The they came back with their long justification for the bvagueness and I just said "okay" and nodded. I feel like I consented at the meeting. So, I feel like this is my way of saying "I thought more about your argument and it is not acceptable - this is why..." And give them a more eleoquent and substanital argument. YKIM?

Maybe I will do what you suggest and if they push back or give me problems, I can then send my fourth paragraph to them. That may be the way to go!

Okay new revised letter incorporating petunia's good advice (thanks Petunia):

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It was a pleasure meeting with all of you on Friday. DH and I are so impressed with the amazing and dedicated group of professionals we have at [Elementary School]and in the [School District]! We feel so very fortunate to have such a dedicated team working with DS.

As I mentioned at the meeting, however, we are uncomfortable with the way just a few of the accommodations are worded presently. Specifically, the accommodation listed under the section titled "Participation in State and Local Assessments" on page 13 in the IEP. This accommodation currently reads as follows:

"Student will participate in local assessments with the following accommodations: - Schedule extended time, provide opportunities for breaks and movement, chunk into smaller segments, monitor the need for a scribe, consider alternate forms of assessment such as oral response, consider reducing the number of responses required."

While we certainly see the positives of leaving some flexibility in the document, DH and I would like the accommodations to be more specific. While we realize that this is the first time we are drafting an IEP for DS and, consequently, we are all trying to figure out his needs as well as finding that “balance” about which you spoke at the meeting, state/local standardized testing time is not the time to experiment with finding a balance. Rather, it is about allowing DS, while using appropriate accommodations, to demonstrate his knowledge and true abilities without the interference from his disabilities.

Therefore, we propose modifying said accommodation to read as follows:

"Student will participate in local assessments with the following accommodations:
- Schedule extended time (at least time and a half), provide opportunities for breaks and movement, chunk into smaller segments, use test formats with reduced written output formats (e.g. multiple choice, matching, etc.) to accommodate for slow writing fluency, provide a scribe or provide oral response as an alternate forms of assessment for any assessment that may require written answers of more than five words, and consider reducing the number of responses required."

Additionally, we think similar modifications would be beneficial in similarly vaguely worded accommodations contained in the “Modifications and SDI” sections of the IEP. Under the SDI section, on page 16 of the IEP, it reads, “Allow additional time to complete written work.” We propose modifying that accommodation to read, “Allow additional time (at least time and half) to complete written work.” And modify the accommodation “Monitor the need for a scribe” to read, “Provide a scribe for written assignments of more than two sentences.” On page 18, we would to modify the accommodation that currently reads, “Consider oral forms of response when assessing math-fact fluency” to “Provide oral response as an alternate form of assessment when assessing math-fact fluency.” Additionally, on page 19, we would like to change the accommodation that says, “Schedule extended time” to “Schedule extended time (at least time and half) for assessments.” We would also like to modify the accommodation that reads, “Consider alternate forms of assessment such as oral response” to “Use test formats with reduced written output formats (e.g. multiple choice, matching, etc.) to accommodate for slow writing fluency.”

Finally, we would like to go ahead and get an evaluation by Dr. S--- and pursue getting DS’s vision therapy through the school district. What do we have to do to put those wheels in motion? Do we need to put this in the IEP? I know that you mentioned that Dr. S---- needs to be ‘re-certified’ by your board – do DH and I need to formally request that be done? I assume the doctor’s certification needs to be valid before we schedule the evaluation.

Thank you so much for everything you are doing to help us in this process. It is very clear to us that you are very committed to DS’s success and we deeply appreciate that.
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How's that? Better?

Bumping this to see if anyone has any imput before I send it!

Just one last thought - why are you putting balance in quotes? It seems a little snarky.

Good luck!

Thanks to both of you! And please I want feedback so your thoughts are valued and welcome!

I said at the meeting, not very strongly, "These accomodations seem vague to me." (DH actually said nothing.) They (school people) did most of the talking and, in response to my saying that, three of them (Asst Dir of Special Ed, DS' teacher and Special ED aid to DS' class) all spoke about how we do not want to "enable" and how we need to find that balance between "supporting and not enabling." That was all I said about the vagueness of the accomodations. After each person defended the vagueness. I kept silent and nodded.

Talk of "enabling" by school staff honestly sort-of makes me cringe - as if his handwriting/vision problems are some sort of addiction that Ds and us, as his parents, are in charge of. DS WANTS to do things like other kids.... He wants to keep up and do things by himself. He does work on handwriting a lot - he gets OT at school and private OT weekly plus he writes for homework, etc. I don't think anyone is enabling him at this point. I have had to talk a lot with DS about being able to accept help and be okay with needing therapy for his challenges, etc. BUT I did not say that - I simply kept silent and nodded.

But I do agree the first draft was too verbose. MON - do you think the second version is still too much in light of what I am posting now about what I said at the meeting? I could scale it down more I suppose!

Also put balance in quotes just becasue I was quoting them - they used that word... not meaning to be snarky...I guess I was just sort of indicating 'I heard you, I know you are concerned with balance, BUT...'

I can certainly remove the quotes if it helps the overall tone - I think they're worth removing rather than come off snarky!

Also when they defended the vagueness of the accomodations they said "this is a living breathing document, we can change it if we need to." And I nodded and said "okay, that's true." But as I mulled it over and discussed it here, I realize that with DS' anxiety I would rather start off specific and doing more and then tweaking it down as we realize he doesn't need as much; rather than putting the onerous on DS to "fall apart" (my words b/c that is exactly what happened) again like he did last year before soemthing is done, YKIM? DS really had a bit of a break down last year (and he was only in kindergarten!) It was awful to watch and as far as I am concerned he nor I can go through that again! It seems a bit like the school would rather err (if they can get away with it) on the side of 'let's just sit back and see if he deteriorates again and then we will know he needs more specific support and we'll step in and tighten things up.' Whereas, I would rather start out making sure he is supported and start eliminating things and loosening things as we see he is really okay. "Fade with success" is kind of my motto apparently and theirs seems to be a kind-of 'introduce if/when DS starts deteriorating again' or 'if we happen to notice that he is actually capable of so much more but is being held back because it takes him several minutes to write a 9 (and often he has to erase and re-write until he thinks he has it facing the right way or even risk getting it marked wrng because he accidently wrote a 6 (and I have seen him do several times at home with homework))

I agree with mon. I would include an "executive summary" in bullet format of the changes you want. You don't want the staff to have to work too hard to find the changes. I would consider eliminating the explicit statement that their accommodations are "vague." It sounds like you accusing them of something. I would offer your changes as "clarifying" language or something similar. If you feel that the explanation portion is necessary, keep the longer version after the exec summary.

LOL I have no idea! That's my assumption - i.e., I have to 'back-up' what I want to change with a strong argument as to why it is necessary. But, never having done this before anywhere, I really have no idea. I just assume that is how our world works in general - I am just opertating on that premise because, well, that is how it works in the law!



Again, I have no idea how it works! Hopefully, I'll get some leeway in how they see me (i.e., whether they get offended by me) as they know this is our first time doing this.

Well, that is a bit of problem too - because of his vision. His visual-motor integration is very poor so he is bad at the keyboard. He still can't dial a phone - eg he thinks he is hitting an 8 but is hitting the number next to it over and over and just can't get it. Same with keyboard. It's his poor visual sequencing and tracking skills. However, vision therapist says that is improving. I realize when you learn to type you learn by not looking at the keyboard but I personally don't see DS being able to do that this year at all. And he has got enough on his plate or I would try maybe typing class or something.

We do have dictation software (the dragon one) we just got it and haven't started it yet.

FWIW I do believe his handwriitng will continue to improve and he'll be relatively fine. Eventually. The combination of vision therapy with the OT has made everyhting really take off. Really. However, he is still well over a year behind his peers (almost two years actually) on his fine motor and even more on his visual motor integration.

And he will be able to keyboard I am sure in the coming years.

Hmmmm good point and very true.

Okay I sent it. I changed the format to be more bullet format but the content is the same. I mean, from my research, these accomodations that I am requesting are very, very standard for DS' disability. It's not like they are getting hit with "out there" requests from us. It took a lot of work and time on my part and they really should have done this themselves. - at least some of it. I left the word vague, because their accomodations really are just that - vague.

I never got the formal invite and the draft IEP before the meeting (I just got it today in the mail). I did get the school psych report regarding the IEP (it looks like authorizing the IEP and making recommnedations). The actual draft IEP I never received before the meeting (which they knew); so, the first time I was looking at it was right then. That's why DH and I were not more prepared and more able to debate and discuss it.

I got a response back relatively quickly form the Ass Dir of Special Ed that simply said:

"Mr. & Mrs. ______,

I will look into the board certification for Dr. S----. The team will review your requests and get back to you both. It was a pleasure seeing you again. I am glad that [DS] has had such a wonderful transition to first grade. "


Seems fine to me. I am not signing until this is ironed out and I assume they realize that. I responded to the Ass. Dir. with a "Great! Thank you so much!"

I guess we will see. I am thinking we will at least get something more specific than the way it is now. Hopefully, we'll get all of it! But they must realize it really should be more specific.

Oh and the other part of the IEP that is weak, imo, is "goals" - we have one goal from the OT... That's it. I am not as concerned about that because I just want to see DS get his accomodations... But I am not sure if that will be a problem in the future.

Just a quick update.

Special Ed Asst. Dir. called me. She included the "time and a half" for tests as I requested (made it "up to time and half" which I was totally fine with basically if he finishes and he doesn't need all of that time then he finishes and doesn't need it ). But she is fussing at the scribe and/or allowing oral answers accomodations... Her suggestions are "have DS ask for help," and have him tell the teachers/monitors when he is tired/fatigued, etc., which, for reasons previously discussed in this thread, I don't think is the way to go. (And I am kind-of disappointed that she would suggest something like that - I thought she'd have more understanding). She then said she thinks he's been doing a great job speaking up for and advocating himself lately so she's sure it would be okay to put the burden on him. (sigh). I still said "thanks nice to hear but no" to that. Her next argument was that she has been hearing that "he's been doing so well he really doesn't need these accommodations." She argued that he recently had an assessment (name of tests began with a "D" and it was a 'local assessment' - not sure what it was but it isn't given again till next year at the start of 2nd grade) and he scored like 14 out 20someting writing the test himself without any help or being allowed to answer orally and they all acted like he scored sooooo HIGH and this is proof he doesn't need a scribe or alternate/oral output. But I just wonder how well would he have done had he not had to write? I KNOW how much processing time and energy his having to write chews up. Again, I am disappointed that she would attempt this argument. I came back by pointing out it has been well-documented that he has hypotonia and struggles a great deal with fine motor as a result and it is obvious from doc reports and OT evals and the problems we had last year that he does indeed need accommodations (thanks again for the great advice onthis thread I was kind of ready with that answer). I mean, I love hearing how well he is doing (and he is imrpoving, I can see) but, really, the reality is at the OT eval two months ago he was still almost TWO years behind his peers in fine motor/writing skills (I mean is that a lot or am I crazy? seems like a lot to me!). That's so much, imo, and I pointed that out. I have also seen the effect writing has on him with the WISC and when he does homework. Her last argument was that these accomodations don't pertain to first grade b/c all of the assessments one takes in first grade he has already done (then why is she even arguing on the first place, I wonder? And why give me the itme and half, then? and I was told he gets a test in February to screen for the gifted program) so I "shouldn't even be worried about this stuff." I pointed out then it will be in place for next year. And she said 'well we re-do next year we can put them in then.' But it's October now and we still don't have an iep for this year, that means that next year this IEP that we are writing right now will be the one to govern until a new one takes over and so yes I want the accommodations in this one. And that s what I said.

Sigh.

I explained all that I typed here about how I'd rather start off supporting and not sitting back and waiting for him to deteriorate etc etc etc.

The converation was pleasant don't get me wrong. And I hung up thinking I would get most of what I want. She said she is re-drafting and will email with wording closer to what I want and see if I am comfortable with that. She said we'll work it out and get it more specific and she understands where I am coming from .

But, I am a bit disappointed that she made the types of arguments that she did against the accommodations. Just left me with the impression that her job really is to push for as little accommodation as I, the parent, will let her get away with. And that made me sad - made her and the school seem a bit disingenuous to me.

MON, thank you so much. That is exactly what is going on! Thank you for breaking it down for me. Love the parapelic analogy.

This is the fundamental problem I run into all of the time in one way or another with DS disabilities. Hypontonia and the vision disorder are hidden disabilities for the most part... they are real but invisible. People, including teachers, aids, psychologists eve, simply do not understand or truly 'see' them. No matter how much I tell people about them, they have a hard time really grasping that DS has an actual physical weakness that other children (that do not have the disability) do not have. It is ignored and not understood and often not accommodated for which leads to all sorts of anxiety and problem behaviors. I don;t understand how many times this has to be explained to educators before they truly 'get it.' And I do not beleive they are at all malicious - it is like they just have this 'mental block' to it.

Anyway, I love how you lay out the disablity vs. grade level/iep. I will probably need it and use it in future dealings...so thank you! I'd love to write out an email and explain it to her right now, but I will wait and see what she comes back with, I suppose... I just feel compelled to educate them because they really need it and I'd like them to truly understand. YKIM? I guess we'll see what she comes back with!

My DD10 does not have an IEP but she does have a 504 for dyslexia/dysgraphia. Like your child, her struggles are often misunderstood and staff thinks that we are a bit crazy to characterize her struggles as a disability. We found that the school readily agreed to extra time but pulled out every excuse possible not to allow for a scribe and/or a reader for standardized tests.

Unofficially, I learned from a staff person that it is a space/staffing issue. Currently, they group all of the kids who need extra time into one room with one proctor for state testing. That proctor is not allowed to speak with the kids outside of a set script. Allowing my kid to have a scribe/reader would mean extra staff in an extra room. In tough budget times, they will not agree to this without a fight. You may have something similar going on in your school/district.

Also, although we all want the best for our kids, remember under IDEA you are entitled to an "appropriate" not the "the best" or a "maximum potential" education. You may want to review this Wrightslaw article on FAPE versus Best: http://www.wrightslaw.com/info/fape.notbest.htm

Thanks Knute!


Yes, I know.


Yes, I think that is what is going on here. Although it annoys me because as I have said before we are in a very wealthy district. I pay an absolute colossal amount in school taxes alone (over ten grand per year). So I am not going to go quietly. I will fight for this. This district is known for being a good district for special needs (albeit their big emphasis is on autism and autism spectrum disorders). I believe if I can get this anywhere it will be here!

I do have good documentation of his condition (CHOP neurologist) and several reports documenting him almost two years delayed in fine motor skills. I am hoping that is good enough amunition if they are gonna keep pulling this "he doesn't really need the accomodations stuff."

I don't have the link at the moment, but there is a letter on the wrightslaw website which addresses the issue of what is "appropriate" for gifted students with respect to FAPE.

polarbear

marytheres, I haven't got time at the moment to reply to everything I'd like to comment on with respect to the follow-up you've had from the school district. I agree with what mon and knute have added.

We were always met with a ton of resistance over scribing, even though we did ultimately get the accommodation written into our ds' IEP accommodations for fluency tests. I am sure the issue was time/staff limitations and I totally understand that. I just want to give you a thumbs-up for the advocacy you've done so far and an encouraging hug to keep going - it's not going to be over once you have the IEP in place, most of us have found that we are still advocating for quite some time - making sure teachers understand why the IEP and accommodations are necessary, making sure accommodations are followed, getting ready for next year's IEP update. It's definitely a journey. A journey that happens to be keeping me unusually busy this week in particular... hence not much time to reply in detail.

Hang in there!

polarbear

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

Lori, I'll second the recommendation for Efofex - it's great software, and the company provides a free 10-year license to students with disabilities. I think the website is www.efofex.com but don't remember for sure - you should be able to find it by googling efofex.

We're Mac users btw, and our ds uses Efofex. He runs most of the modules under some version of Windows (sorry I can't remember which!), accesses it using Parallels. He does use the module on the Mac side that's available, and another (I think Stat?) just came out in Beta form for Macs which he hasn't had a chance to try yet.

FWIW, he's using the iPad in school this year and he has a nice equation editor on the iPad that he likes just as much as he likes Efofex. I can't remember the name of it either, and the iPad is at school at the moment. If you have an iPad you might try searching in the app store - I think it was relatively easy to find.

polarbear

MON and Zen - wow thanks...I know you directed your posts priniarily to Lori but I worry about what will happen with my DS in a few years as math get more involved and simple scribing and giving oral answers isn't enough or gets in the way of DS really participating and learning the material. These are wonderful ideas.

Lori, I am so glad I found you on here. Like I said before, it seems to me to be really really difficult to find other children like our sons... I know some other kids with hypotonia but it usually part of a something else - ASD or some other disability, and it isn't quite the same. Finding another child who is bright/grifted and just has hypontonia only really affecting fine motor skills and posture seems rare. I am on another board for hyponia specifically but those kids have different issues - gross motor issues, speech issues, etc... and while it's supportive again it isn't quite the same. Finding you and the "Jim" in the link that I linked about assistive technology to help a gifted kid with hypotonia really has made me feel more hopeful

This is how schools and teachers seem to approach my child and I did too - until recently. Pushing him to work despite the pain of his disability thinking that is somehow helping instead of causing way more harm than good. I have been a real pain in the butt to the school lately forcing them to wrap their minds around the fact that is is a permanent disability not going anywhere... and forcing writing is like focing a parapalegic to crawl around instead of use his chair b/c he "can" and we don't want to "enable" [love love love that analogy MON :)]


Yup. It's hard to get to this very realization with this type of disability (I guess b/c of the invisibility of it and it's even more invisible when the child is not only okay cognitively but gifted even) and so so so hard to get others to 'get it' as well.

Oh my Gosh - what morons. (sorry)

Thank you. I will try to get the free trial to try it out.

My son's disability was totally invisible until he was 11 and developed scoliosis which required bracing. His hypotonia was mild and I had no idea that he would be more at risk for scoliosis because of the hypotonia. He could hide the first two braces he wore underneath his clothes but the one he has been wearing for the last year is more painful and makes it harder for him to walk or stand or even sit for long periods. It is too hard to go anywhere so we stay home. The isolation is very difficult. The anxiety and sleep deprivation is very hard. I pray every day that the brace will work and he will be able to stop wearing it. We have an appointment soon.

Lori, I had no idea a child is more at risk for scoliosis because of hypotonia. I wonder how I monitor for this? I am taking him to CHOP neuromuscular clinic first week in December so I will ask them to look at him to make sure he doesn't have scoliosis now, etc. But just wondering what the red flags/signs are? How do we avoid/prevent the scoliosis?

It is more common during the adolescent growth spurt. That is when my son developed scoliosis. My son had always been very slender and there was no evidence of a problem until he went to a routine checkup when he had just turned 11. Nobody in our family had scoliosis as far as we knew, but then nobody else had hypotonia either. Most members of our family were athletic, which made it more difficult to fit in even in his own extended family.

http://www.scoliosisnutty.com/adam-test.php

We were told that there was a good chance he could avoid surgery if he wore the brace the required number of hours. This was after months of the doctor saying lets wait and watch to see if it gets worse. It did. If I could go back in time I would insist on earlier bracing and I would fight my insurance company (government insurance) to pay for a doctor more experienced in pediatric orthopedics. The doctor we were sent to was the only one who would accept the low rate our insurance would pay. It wasn't until it was almost too late that we were allowed to see a pediatric orthopedic surgeon who told us there was still a chance that a different brace would work but it is a more difficult brace to wear. My son had been told by the first scoliosis doctor about how his spine would have to be fused to a metal rod if he did not follow the treatment plan, so my son did exactly as he was told. Even though he was sensitive to clothing tags when he was younger he managed to live in a very uncomfortable brace and give up doing things that other kids get to do for three years and it absolutely makes learning more difficult. It is harder for him to concentrate when he is uncomfortable and can't get enough sleep.

Early treatment with the right brace is so important. It is extremely difficult to see a child go through treatment with the wrong brace and then experience setbacks after doing what he was told to do. Our anxiety level is so high right now.