JT starts Kindergarten this fall (in 3 weeks….eeek!) and I’m a nervous wreck. I think I’ve got all of the concerns that any parent would have plus the concerns of a parent whose child has life threatening allergies. I’m really comfortable with the school nurse and his classroom teacher. The discussions we have had have comforted me some, nonetheless, I worry. I’m worried about him making friends, being safe, being a good student and of course I worry about his allergies and asthma. What kinds of lunches will the other children at his lunch table have? Will there be other children at his lunch table or will he feel left out? What if there is a substitute teacher that doesn’t know JT? What if there is a substitute nurse? I could go on and on!
Mostly these have been MY concerns. I worry enough for both my husband, Chris, and I combined (don’t think he doesn’t worry, just not as much as I do). And JT doesn’t really know to be concerned about any of this stuff. Of course, he is fully aware of his allergies and his medications. He knows to never trade or share food and never eat anything without asking first. He knows that food can make him very, very sick. But, he’s never really known that it could affect him socially or that it would mean he would have to miss out. Anything in our power that we can do to help him to not have to miss out on an experience, we do. Anything we can’t control, we don’t really tell him about. No need for him to be disappointed by something he never could have done in the first place. But now, i feel like he’s going to see that he’s different.
And so, for the second time ever he cried because he is missing out on something specifically due to his allergies (he once cried at a birthday party when he couldn’t have the cake, he was only 3). The school bus. Every kindergartener gets to ride the school bus right? Not so. In our town epi-pens and inhalers are not allowed on the school bus and in JT’s life, he’s not allowed to be without his epi-pen. Ever. Period. I was hoping the town would work with us on figuring out another option but it doesn’t seem at this point that it’s going to happen. I’ve spoken to whom I believe to be the appropriate people and I’ve been told that he either has to be be driven or we have to “hope for the best on the bus”…without his medications. JT’s health is not something that I take chances with, crossing our fingers and hoping is not going to happen. But, we don’t really have an easy and clear plan for how he will get to school. And when i told him that he couldn’t ride the school bus he cried :(, and then I cried, which I don’t do very often. It seems to me that he has a special health concern and should be allowed the same opportunities as all the other children. I asked if the school has ever seen another situation where a child was bused and had medication for something life-threatening and the answer was “no”. Is JT really the first kid who wants to ride the big yellow bus and also needs to have medication with him at all times? I kind of doubt it.
I’ve done a little research and there are parents in other areas where the policies are similar to our town’s who are fighting for change. You can read about some of them here, here and here. There are also towns around who allow epipens on buses. I’ve been told by friends and former coworkers to fight for a 504 plan or an IEP. I’ve read that I should keep going up the chain all the way to the superintendent. I know the squeaky wheel gets the grease. I just don’t know that I have enough information to arm myself against a school system. And if we figure out how he’s going to get to school and that something works, I probably won’t send him on the bus anyway. But still, he should have the opportunity to ride the bus just like everyone else and that is my biggest issue. Anyone else ever deal with this before?