One of the tougher challenges we faced -and are still facing- is the need for accommodations at school and/or work. Most parents of T1D kids understand that it is a disability, and sometimes we can’t know about emergencies ahead of time to make good plans. My daughter normally fits in the range of “non-compliant” diabetic, like many other teenagers. So, before she went to high school, we started the process of putting together a 504 plan. This is something I recommend – even if your child is 100% compliant. We just never know when the carb count is off a little, or the activity is too much. Or, lord help me, she gets a cold, has her period, or just plain forgets to bolus or eat. The 504 is there for all of the occasions – it’s there to help with the juggling.
Most of the time my daughter looks normal, acts normal, and keeps up with her work. She is an advanced student, and when she is in class, she does really well on the work. HOWEVER, when she’s out of class, she has a hard time juggling everything she missed. And while she can get notes from other kids, it gets really old to keep asking friends for notes from class. She went through times of feeling like a burden to her friends, to feeling like a burden to a teacher and just feeling overwhelmed. Teachers have forced her to take tests where she never received the study guide because that was handed out in the 10 minutes she was in the nurses office. Or, perhaps that is the exact moment where homework was collected, and she didn’t know until she sees a zero in the gradebook. Even with a 504 plan laid out, she can turn in 90% of her work on time and miss something due to a moment of diabetes care, and then get pushback that “she can’t always be using diabetes as an excuse or a crutch”. It’s infuriating.
The thing about the 504 plan is that teachers don’t expect a smart kid to need help. They would have preferred her to drop to general classes so it would be easier to keep up with the work. We, as parents, knew our daughter would get bored in the general classes. The accommodations are there because she has moments where she needs to turn things in late. It doesn’t mean she is incapable of learning! Teachers and professors want to be notified ahead of time – or immediately notified of anything. I’m thinking, sure thing, just as soon as she moves off a 40 blood sugar, you are the first call I’m making. Or, heaven forbid the high blood sugar, requiring an adjustment every 2 hours. I have seen the messages from my daughter to the teachers. She’s so apologetic – “I’m sorry for the inconvenience,” “I’m sorry I missed this deadline”. I’m so angry and frustrated that the entire education environment makes her feel like she is constantly apologizing for having a disability. I wonder if it were something more visible, if they would still be jerks about it. Its like they don’t realize their role is EDUCATE, and she needs a little extra help getting a complete education.
One thing we battled with many times, is that “it wouldn’t be fair to the other students” to give her extra time. Even though there is a 504 plan telling them its required to give the time. We consulted with an ADA attorney, who reminded us that life is never fair, if it were, our child wouldn’t have diabetes. Best money I’ve ever spent. The attorney told us that if the school didn’t want to take our suggestions for accommodations, then they needed to offer a reasonable remedy for the issues. Once we mentioned this, all of our requests were granted.
Things that we requested is a small but important list. There are unlimited bathroom breaks, ability to have food and drink in the classroom, ability to have electronics out and available (phone for CGM, insulin pump, etc.), extra time to make up assignments. The extra time became very important when she missed a full week in the hospital. Classes stack up, the work stacks up and sometimes it just plain hard to catch up. We also had other accommodations for her ADHD. One accommodation we had that she very rarely used – the ability to retake a test. If she got a D or lower and had been out of class prior to the test, she could retake it. This was a big fight with teachers. HOWEVER, it is their job to educate and if she isn’t competent in the subject, she clearly wasn’t educated well enough on it (and likely missed something important while out of the classroom). I really thought hard on this one. I’m all for consequences, but allowing a kid to move along without learning is a pretty dire consequence. It creates a society of only self-motivated kids becoming educated. I realize people may thing I am being too soft with this. Everyone is entitled to an opinion. The role of school – the primary role – is to educate. With respect to school, my job as a parent, is to ensure my child receives that education, no matter how much effort it takes all of us.
For those that think that teachers are just trying to teach our child to be responsible, and so accommodations aren’t helpful to them. I would counter with the fact that T1D kids have more responsibility than ANY of their classmates. They don’t need more lessons in responsibility. Thank you, but no. Life has provided them an abundance of things to be responsible for. The fact is, school is not a top priority – though it is still high on the list. But for these kids, their number one responsibility is health, and when they don’t handle that, the consequences are far greater than a zero in the gradebook.