Protecting my child’s privacy

self-cathing key


 

yellow_sc_ana He has a lot of learning disabilities, so he is in a tenth grade class with other kids that all have issues. When I said one day something about it, “You don’t have to say anything to your classmates,” he said, “We don’t have secrets in my class. Everybody knows I just go to the nurse to do my catheter.” I said, “Is it a big deal?” He said “No.” I said, “Okay!”
So that’s the kind of group that he’s in. They all have issues, they all have some kind of problem, so there are no secrets. Everybody has issues and you don’t lie, you don’t make up stories. I said, “There are times when you don’t have to tell people,” and he said, “I know.” So there are certain people he is comfortable with and other people I don’t think he would be very comfortable telling. He kind of knows where his comfort level is.

 

Mother of Robert, age 16

 

yellow_sc_ana He was afraid that everybody would know
I remember picking Isaiah up in elementary school and we were coming to the clinic, and I picked him up and he was in the back street bawling, crying his eyes out. I kept saying,

“What’s the matter, what’s the matter?” He said, “You wrote that note to the teacher!” And one of his friends came and asked him, “You have kidney –” he called it something else because he couldn’t read what I wrote. But he said his friend came and asked him and now everybody’s going to know! And that was his fear, that everybody would know. I talked to him about how there some friends that you can share everything with and then there’s some friends that you don’t share everything with, and that this friend would probably not tell anybody, because he talked to him and told him. Later he did find that that friend didn’t tell. So then when he went to high school, I would ask, “Okay, so you have some friends. Do they know about your situation?” He had certain people he told, so he learned certain people he could tell and certain people he can’t tell.

Mother of Isaiah, age 17

 

blue_sc_func Keeping it private
Mom: We discussed a lot at the very beginning how this was private and personal and shouldn’t be discussed with the kids on the playground and it’s not anybody’s business why she’s going down to the nurse once a day.

Meghan: I know, I don’t tell anybody!

Mom: She really doesn’t, and I think it’s really better that way

Meghan: Then across the school, it would be “Oooh, bathroom!” like in second grade before catheterization. I would never want that to happen again!

Meghan, age 8, and mother

 

blue_sc_func We didn’t have a lot of help to help her get independent on this cathing. I needed to find out about the SpeediCath. I don’t even know if they know about them at Children’s, but as they grow, they need that. They cannot carry that bag that says Lofric, and the 16 inch cath and all that, you know! You need to kind of give them options that you can hide better, because it’s a big issue. It would be a big issue for me, for people to know that. I don’t know how other kids will discriminate – you know, they are mean if they know. I told some friends, and it’s like, wow, they think it’s like a horrible thing! So I can’t imagine for people that are not in the medical field and don’t really understand the problem.

 

Mother of Naomi, age 10

 

green_sc_neuro A private thing
It’s not something that she really advertises to her friends or anything. At the beginning of every school year, she goes in with her dad and he kind of helps her talk to her classmates about, “Oh, I’ve got braces on, and I’ve got a shunt and yeah, you can see the tubing in my neck, isn’t it cool?” and about spina bifida and everything, so they kind of understand. And it also helps so that she doesn’t have to answer the same questions fifty times with everybody. But we’ve always kept the cathing part a private thing. Most normal kids don’t go around saying, “Well, this is how I pee!” But we have discussed with her in terms of if it comes up and somebody asks about it, like “Why do you go to the nurse’s office?” what would you say and things like that. But so far it hasn’t really been an issue…basically, we sort of came up with, if it’s a casual acquaintance or whatever, to come up with a non-answer, you know what I mean? “I just need to go by there.” It’s not something you’d explain. But if it’s a good friend and they ask about it, you could say, “Well, I take medication to keep my kidneys protected and everything, and it makes it hard to use the bathroom, so I go and use a cath.” And then if she wants to discuss that with her close friends, she can just keep it really simple.

Mother of Siobhan, age 9

 

green_sc_neuro No one’s going to ask
At one of the spina bifida meetings people talked about this, and we said, “Don’t people get self-conscious about cathing?” And they said to us, “Well, when was the last time someone asked you how you went to the bathroom?” So the answer there is, if you don’t bring it up, no one’s going to ask. You go into the bathroom, they just figure you’re going to the bathroom. Nobody asks. So we had mentioned that concept to her and I think she’s decided that she’s going to keep it that way, that no one else knows.

Father of Siobhan, age 9

 

green_sc_neuro I don’t go everywhere talking about Ryan’s problems
I never mention Ryan’s problems to my friends because it would make him embarrassed. If you knew that your friend had bathroom problems, you probably wouldn’t think that he was so cool anymore. Likewise I don’t go everywhere talking about Ryan’s problems.

Brother of Ryan, age 11

 

green_sc_neuro He’s still really shy about the whole thing. His cousins don’t really know. They know that he has something medical going on, but they don’t know that he caths himself, they don’t know that he wears pull-ups or anything like that when he goes to bed. He’s very private about that. He’s private about that with his friends, even with aunts and uncles. The only people he’s really comfortable with that around would be me and his father, his stepmother, my parents and his grandparents.

 

Mother of Ethan, age 13

 

green_sc_neuro Not really quite ready to share that
She’s been a little reluctant to share that with too many people, and mainly because I think most of them don’t even understand their own bodies enough to know, “What do you do? I don’t understand!” I don’t think they have enough basic knowledge of anatomy to even get what she would be talking about, like what your bladder is. They’re basically just learning about getting their periods and stuff.

She was really okay to talk to this little boy with spina bifida about cathing herself. But I think with her peers, you know, they’re fourteen, it’s a tough age. You know, it’s a tough age for healthy normal kids, it’s a REALLY tough age for kids who are four inches shorter then everybody else, who can’t play sports, who use crutches…and throw cathing in the mix, and I think she’s not really quite ready to share that too much with anybody else.

Mother of Kayla, age 14

 

green_sc_neuro He feels like people would know
I do know for sure when he is out he has a really tough time cathing. There are times we send him with a cath and they come back and he hasn’t used them because he feels awkward and strange doing that. He is always allowed to cath at school. As far as privacy, they give him a bathroom. He can go to a bathroom that no one really uses and they are really understanding, but I really don’t think he caths much at school. I just think he feels like people would know and that’s still hard for him, I know it is.

Mother of Dylan, age 16

 

green_sc_neuro We had to be really secret about it
There’d be times when I’d say, “Don’t you want to do something?” and he’d say, “No, not really, because how am I going to go to the bathroom?” He’d be embarrassed. When he got older, we had to be really secret about it. When he was younger, the good thing was, they wore those baggy shirts so he never tucked in his shirt, he got the baggy t-shirt with the pants. When he was younger he didn’t care, like, oh yeah, talk about a diaper change! But as he got older, it was more of a “Shh, don’t let them know! Hide that bag!”
-type thing, remember? Because you don’t want the other kids to know that he’s different. And really, most people don’t know, just immediate family. Even kids at school don’t know. They just know that he gets up and leaves, but they have no idea that he’s going to the bathroom or if he’s going to medical or where he’s going.

Mother of Alex, age 17