Dealing with the School

504 Plan
Vocational School
Working with the School
Key People

Crohn’s Disease          Ulcerative Colitis

504 plan

My son got on a 504 plan, which is a federal program that helps children who have disabilities of any kind. You need to be open and honest with the schools, and to tell them that you will work with them to get your child’s homework, because there could be days when your child may not be able to go to school. My son lost 35 days last semester, and they decided, because we had doctors’ notes and because of what was going on, to get this program set up that will stay with him right through college. We set up the plan. You can set it up with your doctors the way you feel it should be, but set it up with the schools especially because depending on what grade your child is in, the school’s flexibility varies. In elementary school they’re a little more lenient with the number of days and number of hours kids are supposed to be spending in school, but in middle school and high school it’s a whole different story. So being on this program can help. Also, what we did was we got all of the extra school books that they could give us and kept them at home, so that if there are days when he is out due to an ailment with his stomach, or due to a headache, all he needs to do is get whatever the homework is through email, and he doesn’t have to say, “Well, I don’t have the books to do it,” because we have the books at home.

Work with the teachers, work with the guidance counselor, work with the nurse, and have them know the do’s and don’ts and understand that it may be that he can only do a half day of school, or that he is in school the whole day but for two hours of it he is in the nurse’s office lying down. It’s very important to let the school know and have them understand that you’ll work with the them, but they have to work with you too and set up things like bathroom breaks for your child, because he may have to go to the bathroom two or three times during class, and he shouldn’t have to ask each time. Some schools can be very cooperative if you’re lucky and get the right teachers and principal, but what we did is not depend on the school system to do anything for us; we initiated everything. In September when he was having the problems again, I was the one who initiated a meeting with the school. Because it’s not that he’s lazy and doesn’t want to deal with school. My son’s been on the honor roll, and he even won an award, the presidential educational award, last year even with all of his sicknesses. And he got all A’s and B’s this first quarter, even as sick as he is. But that’s not why this plan worked for us— because he’s a kid who’s good with school. It doesn’t matter what your child’s grades are, you as a parent need to be involved with the school and say, “No, this is what’s wrong with my child, this is the program I got him set up on, and this is how I want things done.” And tell them, “We will work with you; you work with us.” Get the doctors involved, and have them advocating and sending the right letters, so the school knows this isn’t something you are making up, because anybody can say they went to the doctor. If you don’t want your kid needing to have notes every single time he leaves the building, you need to have this plan set up so that the school understands what’s going on.

One thing I did was I took a calendar for the months of September through December, and since I had all of his doctor’s appointments written down in my agenda book, I made a calendar that I keep just with his appointments on it. Nothing else is written there, so I can show it to people, and I sent it to the school nurse so the school is aware of what’s coming up and what classes he’s going to be missing through the month of December. And don’t be afraid to say, “My son’s not going to be here for two days; give someone his homework and have him bring it home.” We have it set up so that if he has a lot of work and he is still not well, he may not get all of the homework done by the very next day he goes back to school. We can have him do it over the next weekend, because you don’t want a child to get overwhelmed. If they’re out for three days and they’ve only been in to school one day on Monday and then come back on Friday, and then they’ve got all this homework to do to turn in on Friday, that’s only going to make the kid sicker, because it’s going to get them nervous. It’ll aggravate their stomach, the cramping will start, and the diarrhea will start. Have an understanding with the teachers that you will have them do whatever homework they can do, and then they will finish the rest over the weekend. And that’s what we’ve been doing, so he doesn’t end up stressed out, because stress just triggers everything.

I think the best thing to do is this. Before school starts, before any of the semester has started, usually the day before, or two days before classes begin, they open the school to parents if they want to go and look around. That’s a good time to get whatever notes you have from doctors and have everything in place before your child starts school. And then during that first month, have a meeting with the nurse, the principal, the teachers or whoever, so everyone is on the same page.

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Vocational School

School was not an easy thing. When my son was first diagnosed, they provided him with a tutor at home, which was wonderful. He actually ended up getting a very well suited tutor— she was a special needs coordinator, so she had already dealt with special needs children. Mentally he didn’t need that, but it was helpful because of his physical needs. This tutor came to our house and she was great. He ended up being promoted into eighth grade, and he actually received the faculty student of the year award, which showed me that the teachers and staff did care a lot about him and did see the effort that he was putting into his schoolwork, even though he was at home. During eight grade he was in school for a couple of months, then out of school for a couple of months, then in school for a couple of months… and it just fluctuated as we were learning the medications and trying to strike a balance with them. But he did get promoted again— he worked really hard and continued with the same tutor off and on and he was promoted to ninth grade.

But being home affected him socially, and in ninth grade things stayed the same— he would be in school for a couple of months, then out of school for a couple of months. The winter is always the worst for him; according to his doctors it is for a lot of people. For some reason the winter months seem to kick the illness right into high gear. So that winter we sent him to a vocational school, thinking a trade school would be better for him because he was so sick. I thought this was going to be a good experience for him because he would be able to learn a trade such as electrical or air conditioner refrigeration, where if you don’t feel good one day you can stay home. Or I thought he could learn to be something like a computer tech, where he could work from home. I thought that would be better physically for him. Well, it was the wrong decision. They were very concerned with him being in school and learning the trade, and they weren’t able to accommodate him in his academic education. But they also couldn’t accommodate him with the vocational aspect, because you need to be in the building, in the different shops, to learn a trade. So he ended up staying back in ninth grade. He tried ninth grade again, but got really, really sick again and ended up losing another whole year. He basically lost two years of school, and the school ended up saying that they could not accommodate him anymore after that. They said he had to go back to the high school in our city. But because of the vocational aspect, he did not have enough educational credits for the local high school to promote him, so they wanted him to repeat ninth grade again. So he’s supposed to be a junior this year, and they wanted him to be a freshman again. So he quit. It’s something I’ll never get over.

But now we’re trying to motivate him again. He just painted my bathroom last week. Doing nothing is not an option, so he’s been doing some landscaping for a friend of ours, and he’s going to go clean my mother’s oven, things like that. So that’s where we are right now. But he’s healthy, he’s feeling good, and he’s got his sense of humor back.

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Working with the School

Here’s what we did: we obtained all of the CCFA brochures and books from his doctors and from the mail, and before he returned to school, I actually made an appointment with his headmaster. I typed up a one-page summary of the disease, the treatment, and what had been going on. For instance, at the time, he was on Prednisone, and I thought it was important for them to know what Prednisone does for you and what its side effects are. It’s important for them to know that if a child in this situation asks to use a bathroom, it means they need to use a bathroom. What I did was to prepare the brochure and a one or two-page document, and brought it to the head before school began. I asked him to share it with whomever he felt he needed to. We asked him also to keep the situation confidential, and we believe that he did to a certain extent. That’s what we chose to do for school.

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Key People

I had to talk to all of her schools. I told a couple of key people at the school, so they understood that when she said, “I have to go to the bathroom,” she had to go. My daughter also courageously went to school with a pouch. She is so incredible about it. She laughs about it, but that is hard in high school.

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