view from behind of white mother walking T1D child to school as they are cross a bridge holding hands
a boy holds his insulin pump and light reflects on the tubing
young boy with his head down on an open book on the kitchen table, medical devices and toys on the table to his left

If you know the Big Freedia lyric above, you probably know that 504 is a New Orleans area code and not a medical accommodations plan for school. But "3rd Ward Bounce" was stuck in my head during a very serious 504 planning meeting with the principal, his teacher and several county administrators and there was nothing I could do about it. I kept checking my Zoom window just to make sure my head wasn't bopping: advocacy is 100% bid-nis.

The goal was to use protections provided under the Americans with Disabilities Act to ask for accommodations when he goes to middle school next year. It will assure that he can freely manage blood sugar without impacting his grades or behavioral standing at school. The plan goes into effect now and follows him through high school.

By the end of the meeting it hit me hard. Most families do this early on but we never felt like we needed a 504 in place.  We attend a small, community oriented public school. I have always trusted the professionals at our elementary school to follow the Diabetes Medical Manangement Plan (DMMP) and they trust me too. Even when we disagreed or a mistake was made I never once doubted their dedication and they in turn know my momma-bear heart. It feels like we're leaving a safe, warm cocoon in a few short weeks.

Some of the accommodations we put into place are necessary: his phone is also a medical device so he needs access. His ability to think is impaired when he is low or high because he feels so drained and ill - not the best time to take a midterm. And if he acts erratic they'll make sure his levels are normal before punitive measures. But others are... weird. Why wouldn't you let any student make up their work after medical appointments or when they are out sick? Why are lunch periods so short that you might need to be at the front of the line just to make sure you finish eating? Why would you restrict any students' bathroom breaks or drinking water?  We padded our asks, assuming someone might think the worst.

If you're seen as a good kid you will likely be trusted to self manage. But it made me wonder...who is seen as a good kid? Who isn't? 

Protections for kids with disabilities are necessary. There was nothing shielding us in a private preschool when we almost lost his seat during a board vote over whether M could stay on the following year. We were lucky to have a teacher attend the meeting and advocate for us, making the exactly-right argument: he adds value to a class of able bodied children by teaching them about difference. Not everyone gets lucky: one friend's T1D child was kicked out of their church-run preschool in the weeks following diagnosis, leaving a child without early education and two working parents without childcare. And camp? It's sticky. Camp is a privilege, not a right. But M is sad to miss an overnight Scouting camp this summer in part because they could not accommodate a sleeping arrangement where his dad could effectively monitor his sugars through the night. He presents as "normal" but does have different needs. So having laws, at least when it comes to school, that say YOU MUST __ _, even if its inconvenient or costs money, is critical just in case....

...someone doesn't operate from the belief that every child adds value to the classroom.

So it's necessary. It's just strange that the same paperwork inherently divides kids into categories of normal, medically impaired or learning impaired. It assures rights while also assuming system abuse is likely on one side or the other.  

I don't think he will use most of what we wrote. I fear he will push through tests regardless, not wanting to be seen as special (ponder that) and then beating himself up when the result isn't what he was capable of achieving. I know he's not likely to go to the front of the lunch line, afternoon blood sugar be damned, because in addition to the possibility of getting his ass kicked he knows everyone else is hungry too.  

It's nice to think that a buddy who knows his needs might usher him into the lunch line or trade places.  It's nice to think a teacher might look at him, make a hand signal that means, "sugar good?" before passing out the exam. Its a future I can see but still feels just out of reach: one where different is just different and not an aberration from the norm. Aberration from the norm is where our humanity gets twisted.  There's this moment in "Atypical" when Sam (autistic) says he just wishes he could be normal and Evan says, "dude, nobody's normal."  It's dismissive of Sam's feelings but there's an underlying truth. (Maybe I just like how Zaheed handles a similar situation in the same episode: "Ya, man, you are weird, but the French eat snails and that's weird as hell and they still get laid.")

I wish every school was like Wakefield Forest.  I wish everyone had friends like the fictional Evan or Zaheed. I wish every kid felt like they belonged at school, was accepted just as they are and given what they need to learn, all over our country, preschool and all the way through, no questions asked.  I wish every parent trusted that teachers and administrators are doing the very best they can within a system that wasn't built to benefit every child and with so few resources. (Maybe we would rebuild and pay teachers a fair wage if we did). 

I like to imagine all this.

But then I remember.... It's hard to blame an adorable kindergartener, wearing a Pokemon tee and a giant medical pack around his waist, for having a disease like diabetes. It's different when that same kid, now with acne and looking more adult than child, smelling a bit like BO and Axe body spray, buys five brownies in the high school cafeteria and lays waste to them. No one thinks the cute little guy got what he deserved. But even in the best of school systems, even among the most educated people, that can change. We are conditioned to judge bodies and behaviors, even though all kids make choices we wish they didn't because they are kids. We're just not that far, historically speaking, from either segregation or a eugenics movements in our country so....

we do it for the N-O

we do it for the 504

we do it for the bounce

we're bringing down the house

we do it for the N-O

Are you writing a 504 for a child with T1D? Need help or advice? Reach out - our school is so so good and took the time to think through every possibility. And a special thanks to the moms who led me through the process before that call, outlining what we had the right to ask for and sharing their kids' experiences in school. The one thing I know I can count on day to day while parenting with T1D is the strength of our diabetes community and our supporters.

two photos side by side of the same T1D boy wearing a medical pack & posing on the first day of school, K and 6th grade