Mae (22, living with a chronic condition): One of the biggest challenges growing up is trying to gain independence. You want to be able to drive, you want to be able to go where you need to go, you just want to do your own thing. I guess when you have a medical condition, it’s always a bit harder.
Rosie (17, living with a chronic condition): Independence might be getting dressed by yourself in the morning. Or eating your food without needing someone to cut it up for you. You know, it’s – there’s different levels of independence. A lot of people think independence is moving out of home or something but even a little thing like cutting up food by yourself can be really encouraging to accomplish.
Katie Wagner (coordinator, peer support group for teens with chronic conditions): There is a big thing around letting go. For parents. I think generally it’s a hard thing. You know, you see a child grow up and go through school and finish school and everything. So it’s a big change for the patient and the parent, but I think when there’s a chronic illness involved, it makes it extra hard because they’ve had to be there for everything. Appointments and staying overnight at the hospital and giving medications and things like that. So it’s a big thing for the parent to try and let go, and quite often it’s a delayed letting go.
Marlene (mother of 2, 1 with a chronic condition): I am allowing Scott to be independent. He goes out by himself on public transport and I have always asked him to ring me or text me when you get to wherever you’re going. Now, he may only be going to a shopping centre, or he may be going to a peer support meeting that he goes to quite frequently, and I’d say, 'Scott, text me when you get there.' 'Yes, Mum.' And he was very good, he always did it, but I’ve even drawn back from that now, because I’ve said to myself, I have an older son, he’s 23, and I have to stop myself and think, would I ask him to do the same thing. Do I expect him to ring me when he gets somewhere or to text me when he gets there? And the answer is no, of course you don’t. So I apply that principle to Scott too, which he’s very happy about that.
Mae: Being independent, I think, for any teenager is a challenge for their parents. Just because they’re always used to giving you care and just being there to support you. But by being independent, it doesn’t mean that you don’t require their support or their care, you just want to take care of yourself. And sort of give them a break as well.
Katie Wagner: I think it’s good to start early and just take baby steps towards transferring the taking of medications, that responsibility onto the team.
Marlene: He very much wants to go to his doctor’s appointments himself, without me now, and again, I think back to myself and I think, ok, he’s 19. When I was 19, would I have wanted my mum doing these things with me? And the answer is no.
Mae: Gaining independence and being proactive in your care gives you a sense of – a little bit of sense of freedom, I guess. It also enables you to be a bit more independent in other areas of your life, because you’ve realised that you can take care of yourself.
Marlene: We did a bit of a trade off and we had to discuss it, where he at times was getting annoyed with me for being too overbearing or too involved in things, so we did actually talk about it and said, well, ok, if you don’t want me involved so much in talking to your doctors and that kind of thing, then you’re really the one that has to instigate things. When you need things instead of saying, Mum, can you ring up such and such, you have to do it. And he has. He’s taken it all on board.
Samira (mother of 5, 2 with a chronic condition): The few times I’ve had to let them make their mistakes and that’s the only way that they get up now, and they look for the things, instead of me, and tell me, instead of me looking for them and following them around. So the hardest part was just letting go.
Marlene: Teens do need to take risks. It is a part of growing up. That’s been harder. I think in my case, because he’s always had mum hovering over him. So that’s something that we’re working on. But I think risks in our case may be different from what risks are for other people. In that for us a risk was letting him catch public transport by himself. That was huge. And that’s really independence. That may have been as big a risk as for some other kid getting their license and going out on their own.
Samira: Louis wanted to drive, and my husband said, “No, we’ve got to let him, we can’t just not.” And I used to think, oh, what if he has a lull and he’s not aware and it’s still too early and what not, and my husband said, “No, he’s got to learn.” So we made a deal that my husband would take them and teach them how to drive.
Marlene: They’re big achievements too. When he achieves something like that by himself, something he hasn’t done before, it’s huge. It’s huge for all of us. And it makes us all – gives us all a lift. Basically. Makes us all really happy that he’s achieved another step. And while it’s hard to let go, it’s very worthwhile.