I have posted a few times about my struggles trying to get our schools to provide the most basic diabetes care to my kid. Since then, I have gotten them to start giving insulin consistently, and it only took 1) daily emails documenting noncompliance for months; 2) contacting a council person; 3) contacting the school board; and 4) speaking at one of the new CEO's listening tour sessions. Of course, they are still not consistently giving the right amount of insulin, still have non of the plans they are required to write, and are still refusing to cross train the medical staff in autism-awareness, because they don't expect my kid to be both diabetic and autistic at the same time--she'll oscillate between her disabilities depending on who is around.
But now, last week I tried to reach out to see if any other parents would have thoughts about this water bottle announcement I got. I am not going to blanket disagree with this kind of school-wide decision, but my worry were about how different the written and phone announcements were, how there was no period to ask questions between receiving the announcement and it going into affect, and that it was going to just create another thing that single's out disabled kids as different. I don't think they're going to not let kids with medical needs not drink water, but I do think they'll set up an environment where a kid realizes that their peers aren't getting water the same way as them, and if they use their accommodation everyone will see.
It turns out, that someone showed my post to the principal, who sent me this long email--like 10 paragraphs--about how disappointed he is in me for posting on social media. After all, I should have just known that sending out a announcement after school ended for the week before a long weekend, that didn't mean he wasn't open to hearing my concerns.
The day I posted that, I had been sending out emails about how my daughter wasn't safe for months, after years of going through this. That morning, I had been held in an IEP meeting for 2 and half hours because I was the only one who did the pre-reading, so they had to read their reports aloud to each other one at a time. That meeting had blown up right at the end when I pointed out that their behavioral data included a lot of dates that were weekends/holidays. Even after that meeting let out, they emailed me dates for a follow up meeting which were all the same day of the week. I asked them to give me options that included a variety of days because that happened to be my most busy day at work and I'm out of PTO, and they straight up said no. My advocate had to point out that the law says they have to try to work with my schedule--but then they just flipped it and told me to come up with dates. (still haven't replied to any of the dates I offered).
I am so exhausted. I spend meeting after meeting trying to regulate the emotions of these people who barely even try to collect data, these people who will not collaborate across departments. I hate the person this makes me be. I hate having to make scenes in public and fact check every single thing the school tells me. The district is just so hostile and they will just abandon any kid who's parent isn't willing to put themselves through these humiliation rituals.
