Wanted to pass this along - State 504 plans for students

[MicroByte]

I wanted to share something my wife and I setup for our son at his school as it will help him greatly and ease our minds of another issue that comes up concerning Crohn's kids and education.

Since he was diagnosed this past February, our son has missed a number of days from school. Last semester, it was to the point where we received a letter that he had missed enough to be considered being held back. He was in Kindergarten at that time so it was dismissed, but this concerned us going forward and put additional stress on our family on top of everything else going on.

My wife discovered something called a State 504 plan which is a federal statute setup as part of the Rehabilitation Act of 1973. It allows a family to declare that their child suffers from a disability which Crohn's qualifies for. We were able to work with our school to setup a plan that would assist our son with his needs - e.g. small snacks if needed, immediate access to bathrooms without question (anytime including testing where the clock stops for him and restarts when he is able to continue), and most importantly - no penalty for missed absences if he is unable to attend school due to his Crohn's symptoms.

I wanted to pass this along to any other parents that were unaware that this is an option. We had never been suggested this before by the school or anyone else and found it out just by word of mouth. My wife had inquired about it on Facebook to see if anyone else could had a plan like this and came to find out that several other parents had a plan in place for things like diabetes, dyslexia, autism, etc.

If you are interested to learn more about it, I would Google search "State 504 plan for students". There's a wealth of information online as well as sample plans for students with Crohn's disease as well. Also, please feel free to PM me if you have any specific questions or just ask here.

 

[my little penguin]

http://www.ccfa.org/resources/template-section-504-plan.html

Here is the 504 template from ccfa

Very easy process we have one for our DS.

 

[MicroByte]

I apologize if this is a little redundant and is well known on this forum. I had done a search and did not find anything related.

Then I check on my message's/quotes and found that momoftwinboys had actually recommended me this information back in May. I don't think I was in the right mindset and just missed the connection, so thank you so much momoftwinboys for pointing to the 504 information so long ago.

 

[Farmwife]

No need to apologize.
We have new parents coming on here all the time.
It's good for them to know about this also!

How is you son doing now?

 

[MicroByte]

Thanks Farmwife. I guess it's a learning experience and sometimes it just feels right to want to share something major, not realizing it might be something that's actually pretty well known.

Son is doing okay at this point. It looks like he's going through a flare up and we have a follow up next week for a blood test to see if he is doing any better. The GI also increased is Asa dose from 1 mg to 1.5 mg for now.

I need to research more, but my wife and I are looking into a diet we heard about called the Specific Carbohydrate diet. I'm sure it's already been mentioned on this site somewhere so I'm going to research more into it. From what I've seen, it seems very regimented and very limiting which is good and bad - getting a 6 year old to eat some of these foods will be a challenge...

*edit*

and a simple search yielded a thread by you asking about the SCD. I need to bring this to my wife's attention since I had wondered about calorie intake and the effects on a developing child. There has to be a happy medium somewhere...

 

[my little penguin]

Have you tried EEN or just plain en?
That really helps kids grow with Ibd.
DS drinks peptamen jr.
Others take vital jr.
There is an enteral nutrition link

 

[Farmwife]

Yup you'll find out a lot about the SCD diet here.
We decided not to do that one because of how limiting it is for Grace
and weight issues or should I say lack of weight issues.
We're doing the Clean Eating Diet. It's been great. She's gained a total of 3 lbs and is keeping it there. Right now she's ill so I still give her a shake (EN) a day.

 

[MicroByte]

I need to look more into the CED and EN, the SCD looks really constraining and seems a bit extreme at this point. My wife is set on this approach though, so we may need a discussion once I learn more about the other options.

SCD would work if we could just have bread. The meats, cheeses, options are easy, but lack of any bread like food really impacts our options.

Thanks again everyone.

 

[Jenn]

Thanks microbyte, always good to bring up! We just started a 504 plan for my son this year. It really gave me a good feeling to have this in place as a safety net. Should lower the overall stress level, especially the permission to turn in work late! His grade-school teachers have accomodated everything on it already, but I'm more worried as he'll head to middle school next year and high school after since I now see with my older (non-Crohn's) son just how challenging it may be.