Daughter recently diagnosed. Wondering if anyone has a 504 plan for their child.

[Meggy1]

After six different doctors, my daughter who is 11 has just been diagnosed with Interstitial Cystitis after suffering with the pain since December 1st. I'm wondering if anyone had a 504 plan developed with their child's school to help them make it through the day and so they are not penalized for what their school may consider "excessive" absences due to doctor appointments or just bad pain days. Any advice would be appreciated.

[kadi]

I'm a teacher & a 504 plan sounds like a good idea. The main thing is to provide a letter from the doctor explaining that your daughter has interstitial cystitis and that she may require immediate restroom access during class and that she may have absences due to the condition.

If the absences become disruptive to her ability to learn, you might request home instruction with a teacher sent to your house for her to have an hour per day of lessons there & independent work to complete. It's no substitute for a "real" classroom with a fulltime teacher & classmates, but it is better than falling too far behind. This may not be so much a problem in 5th or 6th grade, but it can be a significant problem in high school when if standards are not met, credits are lost &/or courses have to be repeated.

Please also find out from the school how safety in the bathroom is managed if your daughter has to go during class when there are no teachers & other students in the halls. If the school has gang issues or is very "open" to the public (not securely closed campus, ie an outsider could get into the building easily), you might request she use the restroom in the office.

A plan should be created with your daughter's teacher/s as to a signal she can use to indicate she needs to use the bathroom so it can be handled discreetly rather than having to ask publicly.

Good luck! Your daughter should receive the services she requires to continue attending school.

[ICNDonna]

Thank you, Kadi. You have given excellent advice.

Donna

[Meggy1]

Thank you Kadi,
Fortunately the teachers she has this year have been very understanding throughout this ordeal and have allowed her to get up and go when needed without drawing attention to herself. Her school is as safe as it can be since all doors are locked barring entrance during the school day except by being buzzed in through the main office. We are also lucky to have a great nurse at her school who has been comforting to Megan when she goes down there. My plan for establishing the plan now is so it is in place for next year since I know the process takes time. I have requested the information you suggested from Megan's doctor and will be submitting the request soon.

Thanks again!

[Brielle]

I was diagnosed with IC at age 12, and I had to go through quite a few doctors in order to get a diagnosis also. I am now 18, and I am a senior in high school; I got an IEP (individualized education plan) at the beginning of high school, and I am now on a 504.

Before I got an IEP I had a lot of problems with teachers and my absences, although I had a doctor's notes about my IC. In middle school, my mom had to be really involved with my education; at the beginning of the year, she would always visit the teachers and explain to them that I need bathroom breaks, that I would be absent, and when I am absent, I wasn't sitting on the sofa, watching TV; it was hard for the teachers to understand IC once they heard "bladder" because they only think that I need bathroom access...they don't understand the chronic pain and it seemed to help when my mom and I brought in pamphlets about IC at the beginning of each school year. When teachers wouldn't let me use the restroom, or would lowering my grade for absences, I would just tell my mom; what seemed to be the must effective way to prevent further problems with teachers was by contacting the guidance counselor and asking them to talk to the "problem" teacher and then, (this is my favorite part hahaha) e-mail all the teachers (even the music teachers, art teachers, and gym teachers) and explain the incident and IC once again; most of the time this results in the teacher being really embarrassed , and then none of the school staff would mess with me for the rest of the year LOL.

In high school my IC got much worse, and I missed much more school. I had to begin new medications, and the side effects further prevented me from attending school . In addition, at one point in my high school career, I also began getting bladder instillations once a week, and because my doctor’s office is two and a half hours away, I had to get out of school early. Eventually my guidance counselor suggested an IEP, and my parents, my guidance counselor, the adjustment counselor, the school doctor, and I developed one. I was provided with out home tutoring (whether I was in school or not) and my tutor was able to proctor tests, so I could take them at home. My guidance counselor was also able to change my schedule, so that I had more study periods. For a little while, I even had my schedule altered so that I could go into school late and leave early; when this was the case, the school said they could even provide me transportation or compensation for transportation because a public education is suppose to be free.

Now I am on a 504, which I transferred over to this fall. But the only reason I switched was because I am doing dual-enrollment (…I am taking all of my courses at a college). I am not familiar with the differences between IEP’s and 504’s, other than the fact that most colleges do not recognize an IEP. Overall, I definitely recommend developing an IEP/504 with the school sooner than later. Being able to learn at home has significantly improved my grades and having an IEP/504 has also seemed to help teachers understand that IC is a serious disease. I hope that helps! Sorry its so long haha!

[Meggy1]

Hi Brielle,
Thanks for replying. Since this is rarely diagnosed in kids it was great to hear from someone who suffered this as young as my daughter to give me their point of view. You give me encouragement that my daughter will make it through this and stay the wonderfull person she already is. Enrolling in college courses while in high school, good for you!
We have started the process to develop the 504. I'm right there with your mom and the email. I've been emailing Megan's teachers, the school nurse, the guidance counselor and even the principal when it didn't seem like the counselor was helping. Luckily I used to work in the school district my daugher attends so I still know people there I can harrass until we get Megan situated. She also has great teachers this year that have been very sympathetic as has the school nurse. We did get the call from the school secretary about all the days she had missed and she would need a doctor's note for any further absences or we'd be fined. This really upset me since at that point we had been running to at least one doctor each week with no relief. After a call to the principal the school secretary doesn't bother with me anymore :lmao: Hope all continues to go well with your education and health. Thanks again for replying.