My 10yo son was diagnosed with brain cancer this summer. When school started he was not doing great, and school pushed for wheel chair and (as we learned last week) made his aide check water intake, bathroom breaks, etc - none of that was requested by us or listed in the doctor’s note. My kid has been feeling better, and he (with support of his medical team) wants to participate in school more, does not need the wheelchair, can attend PE at his discretion, etc. School has been extremely reluctant to easen the restrictions they themselves put in the first place and even reached out to the medical team over my head asking about my son’s prognosis (!) and advocating for physical restrictions. They received no such information because the medical team refused to provide it, but this is when I really lost all trust. Of note, there is neither 504 nor IEP in place as of today. We called them out on multiple improper acts; all of a sudden last week they started saying that my kid needs 504 vs. IEP. I have now educated myself about both to a certain degree. I have a couple of large concerns: (1) right now he is feeling better, and he does not need help with instructions - but this may change very fast; (2) even more concerning, 504 does not require parents’ participation. I am afraid they will bound my child to wheelchair and refuse to allow him to group settings on their own demise regardless of what I or his doctors say. I don’t know how many good days he has - hopefully a lifetime, but that’s just hope. So, I really want him to be able to live while he can and not be isolated because school is trying to minimize their liability. All insights would be very much appreciated!
