I’d like to see kids that have to cath get together. Some of the support groups are for kids with exstrophy but they don’t all cath. The exstrophy part of it hasn’t been a problem yet, it’s more this daily, every three hours, and carrying your supplies, that affects him right now. So I’d like to see more of that, with the kids actually talking to each other rather than talking to the parents, because I think sometimes if they hear it from people other than their parents, it clicks quicker, or reinforces.
Otherwise, just focus on the positive, and let them know it’s just a teeny part of who they are, it’s not what they’re all about.
Mother of Eric, age 8
Keep them in the loop
I really think unless the kid is cognitively compromised, significantly cognitively compromised, keep them in the loop. Don’t lie to them. Do not lie to your kids, do not. I learned that many kids ago! …
We did a lot of prep to get her ready, just talked, used the words and just explained it very matter of factly. “This is what we are doing and this is why we are doing it. Do you have questions? Do you want to learn how”? As much as I’ve been able to I’ve tried to empower her from day one. Sometimes it’s worked and sometimes it hasn’t, but the general habits are there. The approach has been to empower her to take responsibility for her medical care.
Mother of Amalia, age 9
It really helped
I think when Elizabeth started the Coping Clinic that was helpful too. We started because she couldn’t cath. And the nurse said, “You know, she’s so anxious, maybe relaxation therapy, that kind of a thing…” So that’s how we got introduced to Lauren.
Elizabeth learned some relaxation techniques and breathing, not to be afraid to cath…and then it really just overlapped in her life. We’d see Lauren off and on. It really helped, I found out. Since she started high school, she sees Lauren a lot.
Mother of Elizabeth, age 16
Mother of Manny, age 10
Trying to deal with the emotional side
I would always say to the teachers, “You worry about his academics. I’m not caring about that right now. I’m worried about his emotional state.” That was always my thing. “You’re not getting that if he’s emotionally upset, he’s not going to learn!”
So I’m trying to deal with the emotional side that I’m seeing, and to me, the academics will come. Like now, he’s in the 12th grade and since he’s had his transplant, he’s free to put his mind to the books where he couldn’t do it before! The teachers would say, “Oh, he’s daydreaming.” Well, Isaiah would verbally talk about living, dying. I think he was worried about that, and if you’re a kid, you’re going to be thinking about that!
I used to try to get Isaiah to go talk to a psychologist but that’s another story in itself, because Isaiah, he’s not talkative. Well, he’s talkative, but it’s with people he feels comfortable with. I used to always say, “You need to have another outlet. You need to be able to talk to somebody,” and he’d say, “Well, I talk to you!” And I was like, no, because now as he gets older, I’m seeing that as a boy, there’s some things you’re not going to want to tell your mom! And catheterizing, you know, as you’re a teenager, that must bring a whole lot of other issues! So I know there’s things he probably wants to talk about, but I could not get him to. He saw a few psychologists but it was very short-lived.
Mother of Isaiah, age 17
Support and love and understanding
Of course it affected his social life, but he turned that attention to something else; he became a very and friendly person instead of being closed in. We helped him a lot by opening our home to all his friends so he would feel comfortable, played sports that were not long, and we were honest with coaches and teachers, and everyone around him was very understanding and helpful. But we kept it away from all cousins and friends…I think patience and perseverance are major and every child with any need should have the support and love and understanding from his immediate family, and I think it should be private to the patient and his family only.
Mother of Peter, age 13
All you can do
All you basically can do is just try to support them and try to be there with them when they’re upset or crying, or when Alexa said, “I don’t want to do this anymore!” Just trying to support them and hold them, and whatever they’re having trouble with, just trying to reiterate what we were taught together so that we can do it together and move forward.
Mother of Alexa, age 16
To be honest with you, I don’t think that she’s really thought about it a whole lot. This is kind of how her life is – this is one of the things in her life that she just does because they’re necessary. So I think it sort of fits into that category now. As she gets older and starts analyzing, thinking about it more, that may change, but it’s not really an area that I have pushed her in.
Mother of Siobhan, age 9
Just very resilient
He is just very resilient, I have to say, very resilient. He doesn’t react a lot to it, he didn’t complain too much about it. There were very few occasions of “Why me?” – very few. And we were still holding out hope at that point that things were going to get better. It was still only a few months, and then as time passed and things weren’t getting better, it became a little bit more frustrating.
I’d say fifth grade was a little bit better, and he started to have just a little bit more – he didn’t have accidents as much. He just had a little bit more self-awareness. He still lacks sensation; he doesn’t know necessarily when he needs to go, but he’s starting to know his system a little bit better as he gets older.
Mother of Henry, age 12
I did what he does for himself
When he was younger, he always had his bottle and pacifier. I found that if I rubbed the bottom of the back of his neck and I rubbed his head, it was always soothing. I kind of did what he does for himself to soothe and calm him. When he’s tired and he’s relaxed, he would rub his hand in his hair and he would spin his hair. So to kind of soothe him I would mimic what he does to himself, and that would usually help.
The other thing I would do as he got a little bit older was I just would talk to him and try to have him look at me. I found that if I distracted him by making him do visual eye contact, he was able to pay attention to me and listen to what I was saying, and it would help calm him down.
Mother of Ethan, age 13