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    Joined: May 2012
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    Irena Offline OP
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    "Between the low tone in her trunk muscles and her double vision, she fell off of most chairs (repeatedly... to be honest I think she sorta enjoyed falling off chairs...)... at home she usually stood up to eat instead of sitting in her chair."


    LOL - this is my son... seriously. In the YMCA aftercare he gets in trouble for falling out of his chair (it doesn't help that he also does seem to kind of enjoy it... he makes it funny)... He will often stand or pace around while eating or doing anything really - he simply is not comfortable sitting.

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    Irena Offline OP
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    Thank you so much for all of your help, Polarbear. You are very helpful! I truly appreciate it and the time you have taken.

    "By feeding his disability, I think you mean will he become dependent on this at the expense of developing his handwriting skills etc? I don't think so - you can have him work specifically on handwriting at a time that *isn't* a test-taking time. "

    Yes exactly! This is good info and a good way of expressing it! I didn't even realize that this is what I am looking for, basically. He needs to work on writing but I don't want him to be 'disabled' by his poor writing during tests/assessments when his writign skils are like well over a year behind his peers! I could not articulate it, though! Thank you! I could push for this, I assume, at the IEP or 504 (whichever we get) - that he could and should work specifically on handwriting at a time that *isn't* a test-taking time. But that for assessments, etc, he should be allowed to answer orally. Or maybe be given extra time? Can I ask for that, do you think? Can I push for that? Should I? I think he does need that. But it feels so foreign for me to ask a school for something like that (I am a product of catholic schools where you did what you were told and and NO ONE got any special treatment LOL).

    "You mentioned fatigue when answering questions - do you have any gut feeling re what causes the fatigue? Is it sitting too long? Something else? One thing I wonder about from your description - would it help your ds to have breaks where he can get up and walk around?"

    It is sitting still and writing, I am pretty sure. It takes him double energy to hold his posture AND then simutaneously write legibly. It tires him. And it makes him almost temper-tantrumey, ya know? Like he gets to the "end of his rope."


    Have you asked his pediatrician and his OT what they think he needs in the classroom?
    No. His ped is super nice but I feel like he is pretty much clueless about hypotonia as well as eveyrone else and he doesn't even know Ben well. I guess I just don't go to him with this stuff b/c I think he has less info than I. The OT may be helpful. She and I have emailed back and forth. I like her a lot an she seems to be a very good therapist. I think she'd have some good imput perhaps. I could ask her. Do you think I could go to his teacher tp get sugestions? He's the one who is always "concerned" about how Ben will do because "Ben is hard to get on task and needs prompting (sometimes significant) to do worksheets and writing even though he knows the answers and has no trouble with the actual work once he gets to it." I think the teacher isn't sure why Ben does this ... I am pretty sure at this point that it is the hypotonia. Although, he can be a spacey kid in general.

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    Geez, I can relate to this with my eg/pg 6.5 yr old son. He's in kindergarten too. He spent 5 years, though, in special needs, but over the last year has been in two different private gifted schools - both of which haven't been able to accommodate/accelerate him.

    My DS was born with torticollis/hypotonia (trunk - from waist up)/severe plagiocephaly/severe sensory integration/visual processing deficits due to torticollis and uterine constraints during the pregnancy. He had global developmental delays - gross/fine/speech/oral/feeding/vision. He had 5 years of pt/ot; 4 yrs of speech/feeding. Fine motor skills were particularly problematic.

    Ds had vision therapy for 2.5 yrs. It took us 6-8 months before we had a flood of results; some results with posture and attention we noticed immediately. When he started vt at 4.5 yrs old, DS was barely scribbling and unable to draw a circle or square, though he knew all his letters/shapes. Since vt, I cannot begin to tell you how far he's advanced with reading, writing, math, etc. Optometrist did warn us that once the neural pathways were unlocked that he would start making some great leaps in learning - still some attentional issues though.

    DS got tested with WPSSI last summer at 5.5 years old. The test results came back too scattered and inconsistent. Neuropsych said he had ADD/ADHD and possible Asperger's, but nothing about giftedness though he went through a private gifted school's pre-k/k/1st grade curriculum in 2 1/2 months.

    OT evals have come back saying that his muscle tone is now at the low end of the normal range, though he can tire quickly with tests/writing/strenuous activities at times. OT says sensory issues are now in the mild-moderate and therefore doesn't qualify for services.

    Agree medical profession is generally clueless on hypotonia and a lot of special needs/2e kids. Not sure if you're going to get any results from teachers.

    I'm in the process of seeing Dr. Lovecky, who wrote Different Minds, to get some answers. Not sure where you live, but is there someone you can see for more expertise on 2e? I would suggest it. I've found many therapists, evaluators, and teachers are pretty clueless on how to deal with 2e issues and my DS.

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    Irena Offline OP
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    UPDATE!

    I just wanted to let you know that I took my DS for an eye exam and developmental eye evaluation today and it turns out he has something called "intermittent convergent strabismus" http://www.strabismus.org/intermittent_strabismus.html (I really wish they had caught this last year). I am thinking now that it is likely that he doesn't have a learning disability at all - the symptoms I am seeing and the difficulties he is encountering with reading and doing worksheets, etc. are likely due to the intermittent convergent strabismus. What are people's thoughts on this? Polarbear, expecially! I am thinking of maybe not going forward with the learning disability testing just yet but waiting to see what improvements occur with the vision therapy. Or should I still go ahead with LD testing, do you think? I am not sure what to do.

    Also, when I asked about getting him retested privatley next year, his therapist was like no they don't test/eval in a year unless something has "changed" warranting a re-eval. I'd really like him tested again especially after he has had a decent year of vision therapy done. I know the school will test but I'd love to waive school testing and do it provately again. I asked if the discovery of an LD was consideried a "change" enough to warrant a re-eval and retesting in one year and she was not encouraging about that at all!!! Which completely surprised me. I wuld think a change like the discovery of a LD or even the discover of a vision problem would be enough of a "change." What are peoples' thoughts on this? Would the vision diagnosis and subsequent therapy be enough of a "change" to warrant retest and re-eval in a year? What are peoples' experiences with this sort of thing? Thanks so much!

    OH and should I move this post somewhere else? or Open a new thread about this in a different place? or can I stay here... I realize we're kind of off-topic now for being in ID/testing!

    Last edited by marytheres; 06/19/12 04:06 PM.
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    Good for you for getting his eyes checked! As I posted in another thread, this is one of my major "soap box" issues. My DD7 has worn glasses since 8 months old due to strabismus (the constant kind). We work with a terrific pediatric specialist who has done wonders with her through glasses (even bifocals!) and patching. For my DD, wearing her glasses makes a huge difference in her ability to focus and understand her school assignments. She never wants to take them off. You might find that the vision therapy has a really positive impact on your son. I sure hope so!

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    What kind of therapist are you talking about?

    If you were in my school district, I would encourage you to ask the principal for a consultation with the itinerant teacher of the visually impaired. In your school district, there is probably a different title for that position, if it exists.

    Certainly, we try to address vision problems before testing for a learning disability, since those can affect testing.

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    Irena Offline OP
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    What is an "itinerant teacher of the visually impaired?" what does he/she do? Maybe we have someone similar but a different name. What would he or she do with/for my DS?

    So, does this statement "Certainly, we try to address vision problems before testing for a learning disability, since those can affect testing" mean I should wait on the dysgraphia/dyslexia testing till after some vision therapy? I have that battery of neutrological tests coming up next week and wonderign if I should put it off till after several months of vision therapy.

    The therapist I am referring to is one he was seeing for OCD/anxiety. I starting taking him to the local childrens hospital for therapy in the winter because he was having OCD type symptoms. We decided to do an eval and testing - the testing was the WISC IV. He was diagnosed with anxiety NOS, got the above WISC scores (see above posts for why I am concerned about those), and they hinted around, imo, at him being on the spectrum (I completely with disagree with that btw - he has almost none of the symptms of that and never has)... Incidently they acted like I was way off base when I mentioned that I think someone thing is off with his vision.

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    I just saw this thread, and thought it would be helpful to add the accomodations that my DS8 had in grade 2 for his hypotonia and fine motor skill problems. We haven't moved to keyboarding yet, but might do this next year when he needs to write more. This year we had the following accomodations:

    -special cushion on his chair - wedge-shaped and textured to help with posture and sitting still

    -a slanted surface to write on (like a 2 inch binder), sometimes with the paper taped to the surface so it doesn't move around. The slanted surface helps with posture and gives a place to rest his arm

    -graph paper(with big squares) for math to help line up numbers

    -larger spaced paper for handwriting, with the area where the letters should go highlighted (done by hand in advance by teacher or parents)

    -a 0.9mm mechanical pencil (teaches appropriate pressure to apply when writing)

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    Irena Offline OP
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    Thank you, Verona!! Very helpful!

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    Irena Offline OP
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    I am wondering will DS need accomodatiosn for eye issues too? I assume so... I just wonder what?

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