We did start to teach Jared to cath right before his fifth birthday, before we knew that he would start urinating on his own. We figured the earlier the better. It was a problem because I probably should have even done it even earlier. It was harder because I had always done it. Why should he learn it if I did it? But I had waited because he was so young! So in that case, if I could say anything, it would be don’t think that someone’s too young. Have him at least help you and go from there and see if you can get him to try.
Mother of Jared, age 6
A big, big deal for her
I’d say in the past two months we have been able to discontinue nighttime diapers. That was her decision to try and she is exceedingly proud of having done it. It’s a big, big deal for her.
Mother of Amalia, age 9
He’s happy with it!
He’s happy with it! We went back to the doctor’s for follow-up, and I said, “He’s using it once a day, and we put a cath in overnight to let it drain into a Foley bag so he doesn’t have to worry about being wet.” Because with all the saline he used to get up a couple times a night, and you can’t really get a good night’s sleep if you’re up two or three times a night, so we leave it draining into a Foley bag.
And Robert came back with, “No, Mom, I go to the nurse’s office twice a day and do it,” he said, “I don’t just do it once.” He has a bag of stuff in the nurse’s office, so when he needs to use it, he just goes down, grabs his stuff, and goes back to class. Very independent with it.
Mother of Robert, age 16
He learned the same way I learned
He learned how to do it on his own. When he was in kindergarten, he went to Early Childhood. It was a half day, and it was me or my mom that went and got him, so he was getting cathed at the times that he needed to get cathed. But when he started school, it was first grade full time, he knew how to do it.
I think it was when we were meeting with the urologist, and we were talking about how he was going to start school and I was starting work, and the nurse said, “Oh, other kids have learned how to do it. Try to teach him.” And Isaiah caught on really quick. He learned the same way I learned: going through the steps, and then watching them, and then trying to do it on his own.
Mother of Isaiah, age 17
We tried to make her independent in all this
It’s the chronic concern, that she will not remember to do them herself. So until now, I needed to remember to make sure that this is going on. It’s a lot of stress! That’s why I finally got tired – I was the one doing it all the time and remembering. But now this year we tried to make her independent in all this, so she does it by herself.
But she needs to write it up, and we just write up everything in this notebook, every time she voids and caths, and what’s going on. Maybe we don’t record as carefully as we did before, but we try more or less to do that. And she does now cath herself. Generally she’s become very independent to the point that even at home she does it herself.
Mother of Naomi, age 10
As a family, it was hard to get used to. And it was hard – Ellie was scared when we first would cath her. We started out by cathing on the bed, because that was easiest for everyone. Then eventually after about a year, we moved toward cathing on the john. That was a step up. And then Ellie got pretty comfortable with that. Starting around age six she started cathing by herself. She was supervised, but once in a while she’d do it herself, and we moved towards independence. Now she’s eight, almost nine, and she can take care of herself for the full day. We keep the nurse around because there’s the obvious: hygiene is the biggest hurdle to get over, to make sure that she’s not introducing too much bacteria to the bladder, so using Purell, washing hands. That’s as hard a process to learn and get good at as cathing itself.
Father of Ellie, age 8
As much responsibility as possible
We tried to give her as much responsibility as possible, so going into the bathroom she was responsible for getting her little seat on the toilet. She had to get undressed, pull her pants down, and I would kind of get the materials together, and she would open up the catheter package, she would dip it in the KY, and then she would hand it to me at first and I would do the cathing. And then she would take the cath back and put it back in the package and throw it away and kind of clean up. So she was really independent except for that last step there… We started teaching her once and it didn’t go so well when she was younger (six or seven), so I kind of backed off on it. She did have a little bit of OT and fine motor issues, and I felt maybe I had pushed it too soon…
She’d be trying to insert the catheter, it wouldn’t be working, and she would be in tears or shouting and frustrated, “I can’t do this!” And I didn’t want it to become this huge battle or a big self-confidence thing, like, “Oh, I’ll just never get this down!” So I said, “Okay, well, we’ll stop. I’ll go back to doing it.” And I did try to solicit opinions from people I knew in a support group whose kids were doing it – “Well, how did you teach them?” And I went down to Boston to the nurse coordinator that they had there, and we did a session with her at some point, so I was trying to collect ideas for how to make it easier.
We tried a couple different things. First we were doing it with a mirror because that was sort of suggested, but I don’t think it worked for Siobhan. It’s like if you hold up a mirror and try to tie your shoes looking in the mirror, it’s a little weird because you’re looking at the reflection. I felt like it was a little bit like that for her – she needed to go in one direction but it was actually the opposite because of the mirror. So we kind of quit that, and I said, “Well, eventually you’re going to get to do this without the mirror. Let’s see if we can kind of do it by feel.”
Mother of Siobhan, age 9
That takes more time
Because of her personality, once she got it once, she figured, “I should be able to get it again, every single time. I’ve done it once!” – which is just not the learning curve for anything. So she’d get it, she’d be very happy and proud of herself, and go back and not get it the next time and have a complete fit.
I likened it to some things that I had learned in my life, and how simply because you can do something once means you’re lucky. Doing it over and over again takes skill and that takes more time then getting lucky…
Basically, we figured sooner or later she’s going to have to do it to if she wants to not go somewhere with somebody all the time! We figured about the middle of third grade that she had reached the point where she was mature enough to be responsible for that and starting trying to teach her, and that was a big frustrating experience for her. But over three to six months, she finally got it down, and now I don’t know how long it’s been since I’ve had to actually jump in and cath her because she couldn’t. It’s been a long, long time…
When she finally got it she thought it was fantastic. She is now very much more confident in herself as an independent person. We’re looking at going to the point of getting her her own little purse so she has a place to stash all this stuff and be able to carry her own caths around and so on. But we haven’t quite gotten there yet.
Father of Siobhan, age 9
Bringing-home moment
I would say the biggest thing was over the summer. At school there was always a nurse there during the day. If there was an after school activity, she could go by the nurse’s office at the end of the day and stay for whatever that was. But over the summer there are a lot of camps. She’s really into art, she wanted to go to an art camp, and then also, she rides horses therapeutically and they had a camp over the summer, but they didn’t have a nurse available. It was a far drive, I couldn’t drive there to drop her off and then go home, come back in the middle of the day to cath her, and then come back to pick her up, so we just didn’t do it. But this past summer she was actually able to do the camp, because they did have a bathroom she could use for her supplies so she was able to go cath herself and go back to the activities and stuff, and she had a great time!
I think that was, for me too, the big bringing-home moment of independence, because here was something we just couldn’t figure out how to do easily before and now she’s able to take care of that.
Mother of Siobhan, age 9
And you know, I still feel like I am much more involved in my son’s bodily functions than is ideal when you have a son who is twelve years old and on the cusp of adolescence, but it’s hard, because I’m protective and I want to make sure he’s clean and he’s not smelly and that he’s taking care of everything.
Mother of Henry, age 12
The ability to do it on his own
When he was about five is when he learned how to do it. And the first time he did it, he was at school. The nurse called and said, “Hey, he did it all by himself!” and I was like, “Oh, that’s great!” Because I told her we’d been working with him, to let him get it in as far as he could go, and then when it gets to a point where he can’t do it, help him then. But we let him get it in as far as he could go. And it took him two weeks doing that before he was able to pick it up and do it all by himself.
It was about that time that me and his father were getting a divorce, so there was a lot of stuff going on. It was discussed probably for about four months: “Do you want to try it?” and he would say, “No.” “Just go ahead and hold the tube. I’m going to hold it with you, and we’re going to do it together,” and we would start it that way. It was just positive reinforcement. He didn’t get any type of incentives with it, it was more, “You’re going to do this, and it’s going to help, and then you’ll be able to do it all by yourself. You don’t have to worry about someone helping you, you can do it by yourself!” And I think the ability to do it on his own is really what encouraged him to do it. It wasn’t something he needed to have an incentive for, just the mere personal satisfaction he was able to do it on his own.
Mother of Ethan, age 13
It was good we did it as early as we did
When she was seven, the doctor said, “She needs to start teaching herself.” I said, “She’s only seven!” and he goes, “She can do it. She can do it.”
Once she learned to do it, then my husband never did it again. I would sometimes cath her at night but once she learned to cath herself, he never had to do anything for her anymore. So that was good timing, because she was starting to get a little older and you know, the whole privacy thing and the age and stuff, so that was really good that we did it as early as we did…
She goes to a physical therapist that works mostly with kids, and this little boy who comes has spina bifida. I was talking to his mom, and I said, “Has he started self-cathing yet?” And she said, “No, that’s our project for the summer,” and I said, “Well, Kayla self-caths, and I would really recommended it because it gives them so much freedom. I can send her to an overnight, I don’t have to worry about her in school, and she takes care of everything. If I had to be there all the time it would be so annoying – when they’re 14 years old they don’t want their mothers around all the time!” So I tell people that it’s the best thing we did, pushing her to learn to cath herself.
Mother of Kayla, age 14
I take less and less responsibility everyday
I take less and less responsibility every day. He’s grown up and he really does his thing. I get nervous every once in a while because of course when this first started happening, I took all the responsibility – or most of it, I would say – as far as his meds. The poor kid, every two minutes it was, “Did you cath?” or “Did you go?” But now I find myself being able to step back a couple paces, and he is like, “Mom, I am doing this,” and he does.
I was nervous the last visit we had because he is taking so much responsibility and I thought to myself, “I hope he has been taking his medication! I know I do the refills but I hope he’s really keeping up with it…” And his levels were so good, and he actually decreased some of his meds and because he is doing so well on it! He is really taking it all on his own here…
I do think that it’s important to talk straight to the kid and be as honest as possible with them and to give them some responsibility. I think that’s the best thing that the doctors have done with my son: not make it seem like he is somebody that has to be taken care of, but he is somebody that has to take care of himself, and a lot of it is in his hands. Particularly with Dylan, where this is something that he could not take care of himself and lose his kidneys anytime, but if he continues to take care of himself they’ll last. They have done such a good job reiterating that and giving him ownership of his health.
Mother of Dylan, age 16
I might do the overnight one
I was a stay-at-home mom. I just went back to work three years ago, because then he didn’t need me anymore, so I was like, I have to go to work!
Before I used to even have to be on call to go to school. They would call me to come, “There was an accident, we ran out of clothes…” There was just always something.
But now actually his school has a summer program, which is a Skills For Life type of thing. They have an overnight component – they go to some hotel suite or something and spend the whole weekend. In the past he chose not to do the overnight, but this year he thinks, “Oh, I might do the overnight one.” …
It makes life so much more manageable because we can say, “Okay, Sunday we’re going to a party. Let’s make sure even if he doesn’t have a bowel flush Friday night, we do it then Saturday night so that he can be free on Sunday, you know, have a great time.”
And actually he did his first sleepover! Because that was another thing, sleeping over at people’s houses with all his gear? And you know, he has me come in there! He’ll call me, “Mom, I had an accident, come help me quickly!” from bed I make him stay there so I can clean him, so the mess isn’t everywhere getting to the bathroom. And it was just too embarrassing to go to someone’s house.
So last summer he did his first sleepover with his cousin up in New Hampshire and he had all his stuff and his bag and he kept it in the bathroom and he was fine. So it was like, that is quite a deal, really, and I never thought that we would see that day, just for him to be able to take care of everything himself!
Mother of Alex, age 17