Back to School... again

School started a few weeks ago for my children. As usual, at our elementary school, we met with our children’s teachers a few days before school began for parent-teacher-student conferences. Because one teacher was behind and another one was ahead, I was still visiting with Spencer’s teacher when Nate’s teacher was ready for his appointment. Dave went on to that one. I joined them just as they were finishing up and therefore missed the entire conference. I asked Dave if he told Nate’s teacher about Nate and PC. Dave said yes, but we had forgotten to bring the PC Project “Back to School – PC Basics” brochure. We said to each other that we’d send it later and then just let it slip.

However, a few weeks into school, with high temperatures and no air-conditioning, Nate’s feet were very sore at school. His class was doing dance – something Nate enjoys. But, on this day, he told his teacher – as he was supposed to – that his feet were bad. She told him to just go ahead and dance anyway. So he did. He’s a pretty compliant kid, which is a mother’s dream at home, but sometimes, I’ve wished he’d be a little less compliant in certain situations. This was one of them

I’ve no doubt Nate’s teacher has seen him play at recess, running around playing football and other sports. He looks perfectly fine. Not too many people get that sometimes he can run around and other times he can’t. And it’s true, sometimes Nate – like all of us with PC – chooses to “run around” and then pay for it later with blistering and increased pain. And in the case of the dancing day, Nate paid dearly when he came home from school with terrible pain in his feet.

We need to help our teachers understand that our PC kids are affected by many things – infections, the weather, shoes, socks, activities from the day before, even too much activity from the recess before – and sometimes for no reason that I can always tell, our feet just hurt extra badly.

It’s been my experience that teachers are kind and compassionate. They are willing to help our kids. They just need a little knowledge. I blame myself completely for the dance incident. The brochure would have gone a long way in helping her understand. Even if Dave did an excellent job of explaining Nate’s PC to his teacher – which I’m sure he did – it still doesn’t mean she got it. Sorry fellow PCers – but again, in my experience, PC just seems too strange for many people to really grasp.

So I just did what I should have done before school ever started. I picked up some brochures from PC Project. I wrote a little note, explaining a little more about Nate’s feet. I didn’t address the “dance day” – because it’s wasn’t her fault at all. But I did let her know that Nate is the only one who can tell if he can walk or run on any given day. Or even at a given time during a day. This whole experience is just another reminder to me that educating others about our rare PC is a lifelong process.

NOTE: Jan's presentation given at the 2008 Patient Support Meeting on her clinical trial experiences is now posted with the IPCRR Videos & Presentations.