School and Crohns?

[nicumom]

Any tips for how to talk with the school about having a child with Crohns, and for the times when the pain might suddenly come on? I can't imagine sitting there in class with some sort of pain like this - that comes and goes. I don't know what it feels like, the frequency or intensity - but I do know that my son experiences his pain randomly. And during school hours.
Can this become a problem? Do they just have to suck it up and participate in class the best they can and ignore the pain and discomfort?

 

[my little penguin]

There is a booklet from ccfa

Have your Gi write a letter to get a 504 plan.
The. They can rest in the nurses office as needed.
Leave to go to the bathroom
Self limits as needed.


http://www.ccfa.org/assets/pdfs/teachers_guide_brochure_final.pdf

 

[Mehita]

You will want to look into creating 504 plan for him at school. Children with IBD are covered under the Americans with Disabilities Act and he can be allowed certain accommodations at school. Lots of kids here have a 504 plan in place. Things like unlimited bathroom access, stop clock testing, extra days to make up homework, etc.

Here's the link to the CCFA template:
http://www.ccfa.org/resources/template-section-504-plan.html

When thinking about this plan, the template may seem extreme, especially since he's newly dx'd, but it's something you'll want to have in place BEFORE anything major happens. Also, definately in place before middle school when you start having multiple teachers.

Some schools may say you don't need one, but really, you do. Take a look and come back with questions.

IBD kids should never have to or be asked to suck it up.

 

[archaeodani]

my DD was diagnosed about a month ago, after MONTHS of pain, bleeding, etc.. it was awful. She missed the first 3 weeks of school, and damned near didn't make it to her 13th birthday.. it was THAT bad.

the school getting the 504 in place was the easiest, quickest thing I've dealt with in all of this - even quicker than getting a doc to get a blood panel done.

Work with your son's school counselor, nurse, principal = they MAY say a 504 isn't necessary, that all that needs to happen is his teacher needs to know, and all is good, like someone :up: pointed out.. And that very well may be true - for this year alone.

but a 504 is a FEDERAL law, requiring, FEDERALLY, that a child's education is protected = by allowing a little more time to get school assignments in, by allowing timed tests to be "paused" while the child needs to bolt to the bathroom if needed, by allowing extra tutoring time if needed due to missed school because of medical appointments, etc..

DEFINITELY get that plan in place. I would place bets on every doc out there is familiar with doing a 504 for their patients, and it's not a big deal to bring the paperwork to the office, even if there's no appointment scheduled, to get them signed

 

[CrohnsKidMom]

I wrote a lengthy email to the principal and teachers explaining what Crohn's is, how it has affected my son, and things to look for in my son. We are fortunate to have a small, understanding school, so I didn't feel I needed to do more than that. My son is feeling quite well right now, but I've told him that if he just has a little discomfort to try to work through it. If it is more than that to tell the teacher. The teacher has already chatted with him and asked him to talk to her if he's having trouble. I'm not sure if 504's are available in Canada, but I'll have to investigate it. Sounds like a really good safety net to have.

 

[archaeodani]

I'm not sure if 504's are available in Canada, but I'll have to investigate it. Sounds like a really good safety net to have.

Because down here in the states, IBD (crohn's & ulcerative colitis) is considered a disability, it is required of the school to provide accommodations for it == http://www2.ed.gov/about/offices/list/ocr/504faq.html

Does Canada have other accommodations for other disabled folks? ie - wheelchair access to public buildings - that kind of thing.. Our (united states) protections are found in the same general "area" of the Civil Rights laws down here

 

[ChampsMom]

This is one of the topics that I am extremely passionate about as I've worked in the disability field for over 25 years.

Get a 504 Plan in place. Here's the link to the CCFA Template: http://www.ccfa.org/resources/template-section-504-plan.html

Once in place it is legally binding. As much as we want to believe that teachers and Administrators will do the right thing - during the day there are many "right things" that must be done. One of my son's worst experiences was in a classroom with a teacher who was legally blind - you would THINK she would have been one of the more compassionate people - however she was one of the biggest bullies.

There is so much you can put in the template or take out of the template depending on your son's individual needs. A few we added: No bathroom passes, permission required. Access to any bathroom (teachers, students, nurses). Seat near the door (so he could up and leave without making a big to-do about it). Test forgiveness (if he's in the middle of a test and has to go - he has to go - no penalty). Food/drink permissions (he could eat/drink in class at any time). Make up work forgiveness (he got extended time to make up work).

Eventually my son missed a lot of school (most of 3rd quarter of 7th grade and all of 4th quarter; most of first semester 8th grade and then I pulled him). Eventually because we had everything documented so well our pediatrician recommended that he be homeschool through our county's Home and Hospital Instruction Program (HHIP) it has been the greatest blessing! NO stress for him regarding school - EVER! <3 it!! He is now a Junior in High school and has one teacher for most of his classes and a separate Spanish Teacher. He takes all honors courses without the additional stress of being in the class, worrying about his stomach, taking breaks, eating, etc., and he's a straight A student. Because he is a county educated student he also has access to all of the school activities and as long as our doctor agrees he can still participate in activities (he plays ice hockey and baseball).

Good luck!!

 

[Patricia56]

If he has intermittent pain that is not disabling (i.e. he can't walk) then I would encourage him to stay in class. You want him to lead as normal a life as possible. This is part of his life that, unfortunately, he has to live with right now and it would probably be best, for the long term, to help him see himself as able to manage or overcome these problems.

At the same time you should go forward with 504 plan in the event he becomes sicker and needs supports in place.

It's a fine balancing act and not always easy to manage. But for the long haul you want him to see himself as able to over come whatever life throws at him.

 

[CrohnsKidMom]

archaeodani; yes, Crohn's is considered a disability here too, if your doc confirms it disables you from working. As far as school goes, I know there's some kind of provincial law built in whereby the school must accomodate a child with medical issues. To what extent, I'm not sure. Gotta do some research. I don't really know what the laws are for wheelchair accessibility, as far as I recall any public building I go to is wheelchair accessible.
(My son's school had a meet-and-greet ice cream social last night. They purchased Popsicles for my son in case he couldn't have the ice cream. They did this without me asking them, which I considered very thoughtful!)