Getting a 504 plan

purple_IBD_Crohns Importance of a 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.