Announcement

Collapse
No announcement yet.

Need a Game Plan

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Need a Game Plan

    Alright. As some of you know (maybe) I am homeschooled and have been for the past year because of my IC. Well, I am planning on returning to school next year for my senior year and need a game plan.

    Things that are a factor:

    -my IC
    -I am classified as "special education" under the "emotionaly disabled" catigory (I am not sure if that's the real name but you get the idea).
    -my attendance record SUCKED

    I was classified when in 8th grade because they thought I was depresses (turns out it was an adrenal problem) but they didn't think so. So the classification stuck with me.

    For 9th and some of 10th grade (before IC) I was in a "gifted special ed" program that was at a different school than my district. It was an hour south of me. I'm trying to give enough info with out going into the whole sorted story, so if I jump around I'm sorry. Anyway, I got counciling as part of the progran and there was a BOCES teacher there who taught the kids in the program who taught English and Social Studies (I was "mainstreamed" for the other classes). The kids were nice, so were the teachers. My attendance was good.

    Then it all go shot to sunshine when I developed IC. Nobody believed me. They thought I was faking so I could get out of going to school. Well, in late October I had a bad flare while in school. I was in SO much pain that I went to the nurse (who knew what was going on and was on my side). Well, when I went she wasn't there. So I sat outside her door, in tears, in pain, and I felt like I had NO ONE. The English/SS teacher walked by and saw me in tears and found the nurse. I was given Uristat (the stuff that turns your urine blue) and they called for a bus to pick me up early. That was the last time I was in school.

    Anyway, I went through the Home Tutoring experience from HELL. And my mom decided to Home School me this year. And the situation isn't much better education wise.


    Here's what I'd like input on...

    I need a game plan to take to the Committee on Special Education (CSE). They are the ones who decide wether I am classified as "emotional" or "physical" impairment. Here's the thing:

    I REALLY want to go back to the program I was in. BUT I need to be classified as "emotional" and I don't think that's a fair classification anymore.

    NOW, I fall under the "physical" imairment classification. But if I get it changed to that, I can't attend the program. I would be put into my local high school (which has 39 kids to a class, not enough books, and the kids are rude-crude-and just a pain). In total there are 12 schools in my "home district" and only ONE highschool. So it's way over crowded needless to say.

    Anyone have any ideas?

    Thanks!
    gabby

    PS> sorry if I rambled

    Medical "Issues":
    IC
    GERD
    Tachycardia(resting rate is 125-130 )
    Medicastions:
    Tramadol-as needed (IC)-50mg
    Elmiron 200mg twice a day
    Levsin .125mg 1-2 pills 4 times a day

  • #2
    The only thing I can think of is to talk with the counselor at your school for help with placement.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      What does your IEP say? If your IEP classifies you as gifted or as a student with a high IQ, your school should put you in all gifted classes even if it means sending you to a school in another district. If your IEP specifies you have IC then the school MUST provide appropriate accommodations. I left high school after 10th grade but I have an IEP to take the Georgia State Graduation tests. I have ADHD, a high IQ, and IC. My IEP states:
      1. I get as many bathroom breaks as needed without having to ask permission to leave the classroom
      2. I get time and a half on tests
      3. I get tutoring when needed
      4. I have to be in AP or gifted classes
      5. I am not allowed to take ANY P.E. class
      6. I can have my meds (including my controlled substances) in my backpack
      7. I get extra time to transfer classes
      8. I can go to the nurse's office to lie down if I don't feel well
      Most of my accommodations don't apply because I don't take any classes in high school. If you don't have an IEP, you will need to ask your school to write one for you. You will need a signed note from you doc stating you have IC. If you haven't been tested for the gifted program, you school needs to test you.
      As far as the emotional or physical disability goes, you most likely have both. IC patients often have depression and physical limitations. If you take an anti-depressant, you will be labeled as having an emotional disability. Don't worry about it. The college you go to will never see your IEP. Your school CANNOT tell anyone besides the person writing your IEP about your disabilities, even your teachers. The other kids will only know about your physical/emotional disabilities if you tell them. It will be easier to apply to colleges if you graduate from a public/private high school instead of home school.

      Comment


      • #4
        catlover,

        Thank you so much for posting your IEP accomidations. I am definatly going to see if they can make all those accomidations for me (except number 4 because my grades bite :P). I don't see why they wouldn't (although they have done some strange and underhanded things before).

        My IEP states I am a student who has depression/anxiety (which I no longer have). It makes no mention of IC because they didn't belive me. But I am going to push to be classified as "Other Health Impared" and IC damn better fall under that carigory wether they think I have it or not. They aren't doctors (no matter how much they think they are). And I have an official diagnosis. Also, since I am no longer on antidepressants I don't think the emotinal disability is fair to me.

        My meeting is actually sceduled for the 18th of May, but chances are it's going to need to be rescheduled because it was on too short of notice to get my ducks in a row.

        I plan to call my uro either today or tomarrow and ask him to write a letter stating I have IC and require this-than-and these accomidations. And not to take any calls from the school district as it is a HIPPA violation to speak with them w/o consent (he did this once before, on accident, and screwed up everything).

        Anyways, I will update when I know more.

        Thanks again!

        Medical "Issues":
        IC
        GERD
        Tachycardia(resting rate is 125-130 )
        Medicastions:
        Tramadol-as needed (IC)-50mg
        Elmiron 200mg twice a day
        Levsin .125mg 1-2 pills 4 times a day

        Comment


        • #5
          Your school district CANNOT refuse accommodations for IC as long as your Uro/Urogyn writes a letter stating you do. IC is a disability covered by the Social Security Administration (SSA), and if you are attending a public school and the school refuses accommodations for IC, they can loose their federal funding. Hand written letters are best, but some docs do not have legible handwriting. If the letter isn't handwritten, make sure your doc signs the letter in BLUE or RED ink. Also, make sure that your doc DOES NOT use a stamp to sign the letter. Your school doesn't have to accept a letter that has been signed with a stamp because they can claim that your doc didn't write or see the letter.
          Your IEP needs to clearly state that you have IC, not a "not otherwise specified" disability. A "not otherwise specified" disability will not necessarily get you frequent bathroom breaks, access to a room to lie down, or the ability to miss school due to doctor's appointments or a flare without penalty. Most schools have a policy about the number of days you can miss per year/semester before you receive a failing grade in your classes. No matter what you think or your parents tell you, there will be days where a flare keeps you from going to class or you have to miss class to go to a doctor's appointment. If your IEP states you have IC and need frequent doctor's appointments (you DO NOT need to specify how many extra days per year you might miss), your school will have a hard time failing you due to legitimate absences. This does not mean you can miss school because you want to spend the day at the mall or because you just don't feel like going. If you abuse your accommodations, you will get them taken away with no notice. I'm not saying you will take advantage of your accommodations. I have seen a few kids with learning disabilities/illnesses/cancer get accommodations, abuse them because they think no one will notice or punish the sick kid, and get them taken away without notice or explanation for why they were taken away.
          Your accommodations will level the playing field at school. They will help you succeed. They are also a privilege, not a right. Use them wisely and to the full extent possible.
          Your school probably scheduled your IEP meeting for May 18 because your IEP needs to written before the school year is over. It is really hard to get an IEP written during the summer. Your class schedule might need to be adjusted after your IEP is written or the school might need to make adjustments to the school building. (I forgot to mention that I can't climb stairs during a flare. You might want to think about this. Can you climb stairs during a flare? Does it hurt your bladder to climb stairs? If so, you will need access to an elevator. I was lucky in that the college I was at for the past 2 years have elevators in all of the buildings. The college I'm going to next year doesn't have elevators in most if not all of the buildings. The science/math building is in the process of being rebuilt, so an elevator was added to the building plans. In the other buildings all of my classes have been moved to the first floor.)

          Here is a link about IC, disability from IC, and the SSA ruling
          http://www.disabilitydoc.com/interstitial-cystitis/
          Feel free to send me a pm if you have any more questions.

          Comment


          • #6
            Hey catlover:
            You never fail to amaze me with your level of intelligence. I will be getting my bachelor's degree in psychology tomorrow. I am oh so horribly proud that I made it through, especially since I have spent the last 14 years heavily medicated. I just turned 44 and was raised to be a wife and mommy so it kind of seems surreal. So this is where I want to both brag and ask advice, I am receiving the President's Award, isn't that wonderful?:woohoo:
            Ok here's the problem, I will be sitting on the stage with the "dignitaries". Short of "percing" myself up on Percocet so that I am not feeling the discomfort and need to run to the bathroom, and taking some klonopine so that I don't have a panic attack thinking that I might have to get up and run off the stage (or sit there and pee on the stage ) is there anything else I might do.
            I actually held up my daughters funeral procession twice, first because I had to go back into the church to pee and second when we got to the cemetery (I had to go in the ucky place where the workers go, but I was so grateful) As you can imagine I can't even tell you how many klonopine I had taken that morning, I was a total zombie, but the bladder stepped right up into overdrive. My big concern is that the people at the school will not be nearly as sympathetic to my "antics" as those at the funeral. They had me right a speech a few months ago for graduation, and I am so thanking God that they did not choose it. I would love some advice, or even someone to pretend to be me at graduation.
            I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

            DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


            I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

            Comment


            • #7
              If you need to use the bathroom, please get up and go. You will be more embarrassed if there is a puddle on the floor or if you are squirming in your seat trying to hold off going to the bathroom. If you need your meds, I would take them. You have worked hard for your degree. You deserve to be comfortable, and if that means you need to take your pain meds, don't feel bad about taking them. Don't worry about what everybody else thinks. The only thing that matters is that you enjoy your graduation.

              Comment


              • #8
                Thanks! I hope it's that easy. I went to Shrek 3 tonight and had to get up 5 times. I am a pain, not a frequency girl. The movie is only an hour and a half long and I went before and after as well. I can't wait until you find the cure.
                I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                Comment


                • #9
                  I'm a pain not so much frequency person as well. I just started on Avinza on Friday and I'm almost pain free for the first time in over a year. :woohoo: I hope I find a cure, but you never know, somebody might beat me to it.

                  Comment

                  Working...
                  X