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Thread: school with flutuating moibilty and health issues?

  1. #1

    school with flutuating moibilty and health issues?

    OK so I know, this is not really the right website for this... it's just I know there's folks on here who will understand...which most folks with my condition do not....I 'm not paralyzed, but I have a movement disorder that can land me flat on my back with involuntary movements of any part of my body at any moment...so I can go from being perfectly AB to being spastic quadriplegic (minus the head control) in about two seconds flat. Lately, I, the staff of my hihgs chool (student, senior, chair user due to crazy episodes of spasms which are incurable and pretty much ahve no tratment left but brain surgery and/or electroshock...although I am intriguied by intrathecal baclofen and would wnat to see if any surgeon would do that with me before I move on to zapping my brain) have been expecting more of myself than my body and my brain can do. I also have severe anxiety and depression which gets worse when I get stressed. And my physical symptoms get worse when I'm stressed...which makes everyhting worse, and I get more and more behind in school, more depressed, more miserable, and strss my family and friends out yet more.

    And it varies from moment to moment. And everything, particularly life in general, makes it worse.

    So what do I do? I may have one bad day and really need my attendant that day...but for the next two months not need her at all. And vice versa...and I never know when or how it's going to be, and my school is convinced it's their responsibility to make me succeed without an attendant...regardless of whether or not that's actually possible! 'because there won't be an attendant for you at college next year." Yeah...well, give me a break, if I lose my mind and/or flunk twelfth grade, I don't think college is going to be a possiblity then, either, attendant or no. I'm failing, I've had a major bout with bronchitis which kept me out of school for almost a month, and now that I'm back, my symptoms are sucking the life out of my efforts to get caught up, making me miss yet more class, and I'm just about dying from stressing over it...even when I can physically do it, I'm so overwhelmed that mentally, I can't.

    OK so I want advice on what kind of level of attendant help you think I need...(other possibility is doing homeschool or dropping all the classes for this semester) I want to be reasonable, not hog resources, not be dramatic and overstate my needs... But also I don't wnat to shortchange myself (again) on assistance that is going to be vital to getting me through school and passing. I mean, right now I'm failing high school due to absences due to myriad health issues.

    Any advice of any sort would be very, very greatly appreciated. I figure, you guys helped me choose my chair (which is awesome) you might have some insight to dealing with chronic illness/debility.
    Tourette's Syndrome - motor tics of the legs, feet and back, which can make it difficult or impossible to walk

  2. #2
    Senior Member
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    Voxina-

    Are you on a 504 plan or an IEP? If so, the school has to abide by the accommodations outlined. If not, you may want to consider this (particularly the 504 plan) as it will follow you to college and you'll have access to those accommodations in college too. You also may want to consider contacting your VR as it gets closer to college time as they may provide assistance.

    E
    There is no such thing as a stupid question but there sure are a lot of inquisitive idiots. -modified from despair.com

  3. #3
    I am moving this thread to our Work, School, & Money Forum.
    The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
    --General George Patton

    Complex problems need to be solved collectively.
    ––Paul Nussbaum
    usc87.blogspot.com

  4. #4
    Thanks, Essie. Yes, I have an IEP. We had a meeting yesterday, and a doctor's letter got the IEP comittee straight on what I need. I've transitioned to homebound to hopefully help me catch up and get over this speedbump in my symptoms, which the stress wasn't helping. So, Voc Rehab, what kind of stuff do they do?
    Tourette's Syndrome - motor tics of the legs, feet and back, which can make it difficult or impossible to walk

  5. #5
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    In 1992 my state's VR purchased all of my books, paid for my room and board, and provided NCR paper (carbon paper) for a note taker. I believe they would have helped with the cost of college (don't remember) but I was already on a full scholarship. If I remember correctly they also helped with transportation costs. Regardless, it is something to look into.
    E
    There is no such thing as a stupid question but there sure are a lot of inquisitive idiots. -modified from despair.com

  6. #6
    Wow, Essie, thanks! That's great to hear, it's definitely something I'll look into!
    Tourette's Syndrome - motor tics of the legs, feet and back, which can make it difficult or impossible to walk

  7. #7
    Senior Member ~Lin's Avatar
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    Vocational rehab mostly does finance type assistance and support to get in, or stay in, work or school. How much they cover seems to vary greatly, my counselor told me I probably wont get the new wheelchair cushion I need through them when others here have gotten all new chairs.

    Attendant type stuff would be handled by the individual school. There will be a department for this, when I went to Purdue University it was called Adaptive Programs. I met with a counselor prior to starting classes to arrange what was needed. I did not live on campus so I don't know about those sorts of things. My classes were set up as close together as possible and always on the first floor if the building did not have an elevator. Allowed to use special equipment, could have a note taker accompany me, type handwritten things, extra time for non multiple choice tests. In high school I had fought with my school over accommodations, in an unusual way where they tried to force accommodations on me I did not want. They were afraid of my being injured on property, I didn't want to stand out even more. But I was ready to accept the assistance later, and the adaptive programs counselor stressed setting things up for my worst possible days so that I could still attend class.

    Sometimes you have to do what you have to do. The second half of my junior year and my senior year were very difficult and I had to finish by homeschool. I missed way too much school and they were not happy about the Dr excused days which aren't supposed to count against you. They didn't understand that I had some specialists an hour away in Chicago and a single appointment was a whole day affair! I honestly have a lot of regrets from those years, but its true that high school is such a small part of your life and seems so much more important while you're in it. Do whatever is needed to best take care of yourself and your needs, don't regret it, and power on through so you can move on to the next phase of your life.
    Last edited by ~Lin; 11-07-2012 at 06:04 AM.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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