At the meeting you need to make it very clear that while not being confrontational about it you feel your child's needs are not being met.
Explain what you need to each teacher and each subject. Some classes will need different accomodations than others. Our daughter had different needs for her advanced spanish class than for her english class (one could provide work for home the other truly had to be done before school when she returned because I couldn't tutor her in Spanish).
There should be someone provided by the school at this meeting to take minutes. At the end of the meeting make sure a follow up date is documented. It should be somewhere between 14-30 days. I know that sounds like a long time but setting this in motion will not happen overnight. Just like the PID diagnosis didn't happen overnight. What you are doing though is setting in motion a plan that will follow through high school when it most matters.
These plans are something that parents should set up right away once a PID is diagnosed. It is only a matter of time with this disease when your child will need it. Don't wait until the illness takes them out of school and you're already stressed with hospital stays and doctor visits to try and haggle out this plan too.
The school will try to tell you your child is not sick enough or "delayed" enough for this plan. This isn't true. A physicians update is all that is needed to document the need for accommodations.
These plans are not just good for the sick times but also good for at school times in order to cut down on sickness. We've talked before about the accommodations of having HEPA filters in the classroom for lung/asthma patients (easier to do in the early grades when they don't change classrooms, Middle/High school virtually impossible). Also being made aware of not only contagious illness in their own classroom but grade level (any type of contact). Each day in elementary school Macey's class got to "play" in shaving cream on their desk (because it cleaned and sanitized the desk for the teacher automatically). But it was a written accommodation.
Older students can cut down on fatigue by not carrying large textbooks back and forth to school each day. Have it written that two sets will be assigned each year (one set for home and one set for school). Their books can be kept in each classroom so they don't even have to be toted from the locker.
Accommodations for the allowed amount of time to make up work. The time needs to start after they have met with the teacher and reviewed what they missed.
Bathroom trips, water access, breaks on the playground (Macey's school did not permit younger students on the playground to sit on the benches, they were required to "play" their entire recess. Impossible for her), somewhere to go in the office if symptoms are present but might be fought off and the child can stay at school (better for middle/high schoolers). Macey has salvaged many a day in high school by going to the office for 20 or so minutes and resting.
You basically have to make them understand that this is expected to be a lifelong medical illness that will need to be accommodated to make him a productive citizen when he is an adult. It does fall under ADA and is recognized as a medical disability.
But setting it all up will take time and a great deal of patience.
