Looking at children like they’re all the same
When I had a meeting with the teachers, one of them said, “If one kid asks to go to the bathroom, everyone is going to want to be going to the bathroom!” So I said, “You should know your kids! If somebody is going to ask to go the bathroom because someone else is asking, you should have already picked that pattern up for that particular kid. But Isaiah has a medical reason why he has to go to the bathroom!”
I don’t think that the teachers themselves know much about the social emotional impact that a chronic illness has on a child. And when they bring them into a setting where the teachers aren’t looking at children individually, and they’re looked at like they are all the same – they get equal everything, if one can’t do this then one can’t do that – they’re setting up the child who is ill to feel awkward and different…
The other thing I would say as advice to give to parents is that schools are not always going to do the right thing. Having a good team, like even here at Children’s Hospital, is phenomenal. And if you have to pull the team together to go to the school to hammer them, then do it. But there’s lots of support out there – it’s just really tapping into them to get what you need.
Mother of Isaiah, age 17
She put all this pressure on herself
She dropped a course – Honors Chemistry, I guess it was? Biochemistry? I don’t know what it was, but nothing I could help with, I know that! She was doing well but she missed so much school. She had a tutor and she was getting 90’s on the tests, I remember she was doing really well – but she hadn’t done labs and all this work was piling up and she was starting to freak out. And thank God the counselor said, “You know what? Why don’t you just drop it?” I mean, she leapt to take this course! And she can take it next year or take it this summer somewhere, but she put all this pressure on herself…She was in AP English (she writes wonderfully), and she found again the work building up, building up. So she went down to Honors, which is fine! Why are you taking these APs? You don’t have to, and you’re out sick so much!
Mother of Elizabeth, age 16
Separation anxiety
When she was in kindergarten, I volunteered in the school. I didn’t go back to working full-time; I worked three or four days a week, mostly three. But I volunteered at the school, and I would have to walk her to the bathroom, because she wouldn’t go by herself, to have her go and to change the pull-up. And she could care less, looked forward to seeing me! I remember she had separation anxiety issues there, maybe because then I had to be with her so often. If she joined something – let’s say she took Spanish after school for grammar school – I had to be there, wait for her in the school, just had to be around. First and second grade, third grade…She took ice skating lessons when she was young, I had to be at the door looking in, oh yeah, all those things! I forgot about that. But it didn’t last, obviously.
Mother of Elizabeth, age 16
Introduce it during the summer
It fits my family fine, and quite honestly, the only thing I wish is that we had done it a little sooner. I wish we had skipped the biofeedback, because at that point we would have had the full summer on our own to do it and then we wouldn’t have had the problems with the school. I think if it’s a kid who has had long-term issues and there is a summer coming up, then introduce it during the summer, because although they’re required to help, you can see being a school nurse, it’s not what you deal with. You deal with stomachaches and a head bump and anything more serious than that you send them home and they go to their own doctor.
Mother of Meghan, age 8
Give and take
Especially now because Ellie is part of the process, it works out well. When she was in kindergarten and first grade, we always had a pow-wow at the beginning of the school year, a big meeting with the teacher about when we could get the cathing in without disrupting the process. And so we’d have to go over what’s the schedule for fall semester, “Okay, we’ll work it in here,” and it was give and take on both sides. Now it’s not a problem at all. The quicker she gets the less noticeable it is – she’s in, she’s out.
Father of Ellie, age 8
More than accommodating
When she goes to school she always takes a long-sleeved sweatshirt, so if worse comes to worse she ties it around her waist. And she has an extra set of clothes at school. But the nurses there were just really, really great. I’ve been really lucky with the nurses that we’ve run into there. You know, “Whatever I need to do to help,” whatever they can do. If she wants to come cath herself in their office, that’s fine. I mean, they’re really more than accommodating to whatever needs to be done… It does require planning. When she was spasming a lot, I don’t think she was learning a lot, because all she was thinking about was, “Am I going to wet? Am I going to wet? Am I going to wet?” Now that that’s better and we seem to have a way to handle that with the Ibuprofen, I think that she worries about that less. But she does worry about having accidents. She’s already planning – she looked at her schedule and she just said to me the other day, “I think I can cath myself here, and I can cath myself there,” because she caths herself more frequently during school. She tries to do it on her breaks between classes, and they’re great. She has no late problems, she has a free hallway pass – she can leave to go to the bathroom whenever she wants to. They’ve been really accommodating as far as that goes.
Mother of Kayla, age 14
How can you overwhelm them?
He would have surgery and he would flip out, because he’d go back to public school and he was three weeks behind and it was MCAS,* MCAS, MCAS – a ton of work. He’d be like, “Ahh!!” Whereas at this school, it’s like you pick up where you left off, you know what I mean? How can you overwhelm them? They’re going to shut down even more. They’re very into knowing what these kids’ schedules are outside of school, where public school is like the homework, the homework, the homework!
Mother of Alex, age 17
* Massachusetts Comprehensive Assessment System, a state standardized test