The last blog I wrote for you was about the basics of a 504 plan. Today’s blog comes from the heart. It isn’t your happy, feel-good story either. When I think about it, I get mad all over again.

You see, getting my son’s 504 was not all that easy.

At the end of my son’s 5th grade year, we finally got in to see a GI specialist. It was decided that he should have a endoscopy and colonoscopy. I remember telling one of the school staff that he was going to miss a few days of school because of the procedure. I was surprised that she asked me why he needed it – a teacher that has know him since preschool. Really? Because he hasn’t eaten anything for years and he complains to you of being sick EVERY DAY!!

Scoping = You’ve got Crohn’s.

We spent the summer scrambling trying to figure out just what is this Crohn’s disease. One helpful outlet was the CCFA support group we joined. They told us that we needed to get him a 504. Also that summer we switched him from a charter school to the public middle school. This proved to be our first mistake. Before the school year even started, I contacted the school about getting the 504. I did not receive any response. Two weeks into the school year, I again talked to the school about the 504.

Let me stop for a moment and just explain what kind of condition my son was in. He had been sick for years before he finally got diagnosed. And the only reason he did get in to see a specialist was because he was a wreck. Of course the first medication they gave him was. . . you guessed it! PREDNISONE!! They also put him on 6mp and pentasa. All of which was not working well. Now he is going into a new school (middle school mind you). He is super sick and can hardly get out of bed. He is having to leave school early and is missing lots of school. And he has gone from being a skeleton boy in May to packing on the pounds in August.

So back to my pleas for a simple 504 plan. I cannot recall exact dates, but for the story’s sake, lets just guess it was about September that I finally get to have a meeting with someone. The first meeting I think was just meant to humor me. I didn’t want to be confrontational either. I discussed all of my son’s medical issues and some of the needs he had. I remember telling the principal that my son needed a low fiber diet. The principal’s response was to tell me that the cafeteria has lots of healthy food including a salad bar. Remember, prednisone fat kid. Needless to say, still wasn’t given a 504.

As the semester wore on, he still would miss a ton of school. There was a project in science the 6th graders all had to do. It had three parts to it – a report, a model and a presentation. The science teacher kept raving about how good his report and model were, but he was missing so much school that he was unable to do the presentation. They wouldn’t give him a grade for the work because he didn’t do the presentation. Kind of appalling.

Truthfully, I feel that they simply thought my son was faking it and playing me. It didn’t matter that I sent letters from his doctor stating his diagnosis and the seriousness of it. In the next meeting I had with the principal, I brought a friend with me who also has a child with Crohn’s. We went over all of his needs again in the meeting. But I don’t think that I was ever going to get through. He said something to me that day that still gets my blood boiling. He looked at me and said, “Why do you want to label your child?” Label my child!!!! My son has a serious illness with no cure! I would give ANYTHING to take that away from him! I would rather have this disease than my son!

After that we were done talking to the principal. We sent a several page letter to the school board. We had our 504 within the month. Unfortunately, that wasn’t the happy end of the story. My son missed 3/4 of the school year that year. It was a struggle trying to get the school to help us with anything. We tried starting him out at this same school for his 7th grade year. The school did everything they could to avoid following the 504 plan. They treating him very badly. Finally about a month into the school year, when they blatantly failed to follow the plan, we just pulled him and never looked back.

Since then, he has never had a problem with schools or 504s. My son’s has helped him out in many ways through school. Now that people are listening and following it, he doesn’t have to worry so much about how his IBD will affect his education. In all my experiences with other IBD families I have never heard anyone have anything but good experiences getting their 504s. I get jealous sometimes. I’m sure we are not alone, but I think horror stories like mine must be few and far between.

504s are completely necessary and worth it. Are they perfect? Does everyone follow them? No. Definitely not. But get one anyway.

Editor’s Note: Cheryl Hentz is a monthly contributor to our blog. You can find Cheryl on Facebook at Mother of a Crohnie, on her blog at Mother of a Crohnie, and also on Google+