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GI Parent Partner: School and IBD

Transcript


It's really hard to wrap your head around sending your child to school especially when they've first been diagnosed.  You know, whether you've been newly diagnosed or whether you're a veteran of this disease like I am, there's no doubt in my mind that you are going to hit a bump in the road.  So it's really important, especially with schools, to know how to handle that.  When you go to your school after you've been diagnosed, you need to put in place what's called a 504 plan and that is your government state right of care, care that you are receiving through your school, they can't leave you behind.  They have to provide quality care.  They have to provide tutoring.  They have to get you caught up to speed, that's what your 504 plan is.

What your plan of action is, should anything happen.  Boys Town Hospital has one.  All you have to do is ask for it and fill in your name and maybe any extra details that you might possibly need that go along with it, but it doesn't matter if your school is really really great and is accommodating to everything, because sometimes when push comes to shove and if you've had a lot of missed absences and the state gets involved, you have to have that documentation to back yourself up.  Documentation also includes every time you go to the doctor's and you miss school or you go for an infusion or you're out sick that you have a doctor's note to back it up, make a copy give it to the school, keep the original.  Along with that 504 plan you need to have nurses pack.  You need to have something comforting in that nurse's office, your plug-in hot pack, your Tylenol, things to make you feel better, a full change of clothes, extra underwear, things like that that you keep just in the nurse's office that you know if something happens because things just happen, that you can run there quick the nurse knows you can change you can get right back to school, or she can help you call your parent if needed.

 Then everything also in your locker, things to make you feel better, an extra change of clothes.  Maybe something happens and you can quickly change in the bathroom and get right back to your class as needed.  You also need to set in place with your school a bathroom policy so you need to talk to your teachers, your school counselor, your principal, and your nurse and they need to know that your child needs to go to the bathroom whenever they can.  Sometimes when you have to raise your hand and ask to go to the bathroom and wait for the teacher to ask it's already too late and that can be really embarrassing especially for a small child. The other thing I suggest is a really cool thing that my school did, so I always suggest talk to your school counselor because there's a chance that there's quite a few other kids at your school with chronic illness, whether it be diabetes or something else and have your school counselor get a group together where you can meet other kids that have chronic illnesses.  It might not be your chronic illness but you know that there's other kids going through some things as well.  They can all get together.  They can all share stories and become friends and it's just plain nice to know that there's other people who have some things going on.  It makes everybody feel a little better. 

Sending your child to school when they're initially diagnosed with IBD can be worrisome.  Joanna Hagedorn, a Parent Partner with the Pediatric GI team at Boys Town Pediatrics talks about her experiences and offers advice to other parents going through this transition.

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