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 At first, she had a nurse go into the classroom with her. That lasted about a week. That made me absolutely crazy, it made her crazy and it was just too much. So when she was at school we did nothing at all. Even though the school wants to do medical stuff and the nurse really wants to be involved, nuh-uh, because her life is medicalized enough.
Now she just goes to school so seldom that it’s not an issue. She’s on a modified schedule and it’s modified so she goes two days a week, Tuesdays and Thursdays, and for example she went to school yesterday so she is totally wiped today.

 

Mother of Amalia, age 9

 

You never told me you weren’t going!
A couple times he had difficulties with the cathing, and that’s when we discovered he wasn’t cathing at school. Once he said that the nurse’s office wasn’t sanitary, so I said, “But you never told me that you weren’t going to the nurse’s office!” He said that was because he knew I would go up there.

So I went the next day: you could smell the bleach when you walked into the building – he just didn’t want to leave! Because then we found out the time he needed to catheterize was around his lunch time, and that’s the only time he gets to be with his friends. So they worked out some system, a male teacher’s bathroom he could go to, and then he worked out the time he could go. I think it was the transitioning from a class to another class that was close to the time he needed to cath.

Mother of Isaiah, age 17

 

 School was the biggest obstacle
My husband learned, her sitter (who luckily we’ve had since she was two) learned, and my mother learned, and she would allow any of us to cath her. The one person who never did learn and could never actually do it was the school nurse. That was our biggest obstacle – school was the biggest obstacle.

The nurse made the attempts, to pretend like she was learning, but I would say things to her, like, “No, you have to get down on your knees and you have to wear this light on your forehead. I know it’s goofy-looking but it’s so dark!” We had a friend who was a nurse and she had recommended that light, and it was a saving grace because that’s the only way we could see. And my husband said the same thing: “If it wasn’t for the light, I couldn’t find it.” But the nurse would crouch and have someone behind her hold the light. And I kept telling her, “You’re not going to be able to do it that way!” And she would try to have Meghan lie down, the lying down never worked, and I was leaving work every day at ten to help cath…She would call Children’s Hospital and try to talk to the nurses and it was almost to the point where they were going to have her come in and do a training with her, but by the time we doing it for a month, Meghan was doing it all by herself, every single time.

Mother of Meghan, age 8

 

Making people understand the routine
The nurse knows and the teachers know she needs to go to the bathroom, but always at the beginning it’s tough. And then she changed schools in elementary school – she was so sick she couldn’t make a lot of stuff, so she changed. And now she’s going to change again, because she finishes elementary and goes to middle school. So it’s going to be again a new change, and making people understand the routine.

Mother of Naomi, age 10

 

Alexa and I went and spoke with the school nurses, and she packed her own catheters and all her equipment that she needed and brought it to the school every week, and brought the bag home on Fridays, and then brought it back on Mondays with her supply. And she always had everything packed. She was very, very independent with that, because she wanted to get better and she understood. She was excited every time the amount of her catheterization (because she had to measure it) got smaller and smaller, and also excited that she was peeing more frequently than she was before.

 

Mother of Alexa, age 16

 

That was a hurdle for us
Dad: We’re in private school. Otherwise public school would have a nurse, a fully trained nurse, so that was a hurdle for us. The school was very accommodating as long as it wasn’t an imposition for them. Now I guess we gained their confidence: they actually send a nurse over to just supervise. So that’s working out really well. It turns out to be a neighbor, so Ellie is comfortable with it.

Ellie: Being with another person that I actually know, it’s okay, and I know they’re a nurse. But if they’re just a random person that I barely know? No way, I’m not getting near them!

Ellie, age 8, and father

 

Taking the time to educate her
When we started kindergarten and I first spoke to the nurse, she was a little hesitant, like it’s been a long time since she’s cathed anybody, and I said, “Oh, we’re going to do it on the toilet.” She was like, “Oh my gosh…” But I went in and showed her how to do it and she had mastered it within like a day and thought it was great and was very supportive after that. It was just really taking the time to kind of educate her and go in and say, “This is how we do it, it’s really easy, here are the tricks.” And after that they were really on board with it… When we first started teaching her, they were still cathing her at school, and basically we were working on having her doing all the cathing at home. Because I didn’t want for her to go into the bathroom on her own, not be able to get it, get frustrated and be on her own, so we said, “You know what, at school, let the nurses do it for you.” But this year she’s in fifth grade, she goes in and all her supplies are in the bathroom in a little cubby, and she takes care of it on her own now.

Mother of Siobhan, age 9

 

 The nurse in school had some problems, so for a couple weeks, I actually would take an early lunch so I could go to the school and help him, because she was just having a lot of difficulty with it. And then it was at that same time frame that he was starting to pick it up on his own. She only helped him with it for a couple weeks before he started trying to do it on his own.

 

Mother of Ethan, age 13

 

You’re not the first kid who has had to do this.
He caths on his own. He’s very responsible in terms of setting things up with the nurse. We have a system – we have his materials at the nurse’s office. Every day at the same time, he goes to the nurse’s office, he does his business, and he gets back to class. The teachers are aware of it, the nurse is aware of it and it’s fine. That works very well. And even the nurse said, “Listen, you’re not the first kid who has had to do this.”

Mother of Henry, age 12

 

Encouraging her not to need me
When it came to having to be cathed, I could have let the school nurse do it, but I was not really sure how often they had done that, so I was just really hesitant to leave that to someone who may have not done it…and I just had visions of cross contamination. I said, “You know what, I’m not doing this.” So I had to go to school every day at 11:30 and cath her after lunch. And then second grade, by that time she was cathing herself, but she still wanted me to come every day to school because I think she just liked seeing me! So I told her, “Well, I’ll come, but you need to do the cathing.” So I would come every day to make sure everything went okay, and if she was having problems or anything, I would just pop in. And then periodically I started saying, “Well, I can’t make it today because I have an appointment, so just call me and let me know if everything’s okay, and if not I’ll stop by school.” And the nurse there was really good at really encouraging her not to need me in the building. And then by third grade she would just call me. She would cath herself, then call and say, “I’m all done!” But I think she just wanted to chit-chat with me during the day. It had nothing to do with if she cathed, it was just an excuse so she could call me in the middle of the day! And after that I never heard from her all day.

Mother of Kayla, age 14