Our clinic has a really good program for kids called 'Goals of Self-Management' to help kids start becoming more independent that we talk about at each visit with the social worker. There is a nice chart that breaks down various aspects of their care into fairly broad categories based on age- starting at about age 4- and it leads up to their 3-step program of transition (age 12ish through when kids move on to adult care.) Our clinic website has links for the transition information but I've never been able to find what they use for younger kids there. I'll see if I can get a copy of it at Emily's next clinic appt to share more here. As kids reach goals they are working on they are rewarded at clinic. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Emily is 9; developmentally about 6. Like Dana's daughter she is (thankfully!!!) able to take everything in pill form and so is able to fill her own pill box under supervision and enjoys doing this. She knows the real names of everything she takes and what each one does in basic terms. If anything 'different' should show up in her daily pile she gives it the hairy eyeball and demands to know what is that thing and WHY do I have to take that- and I think that is an important developmental step towards responsibility as well.
She also is responsible for getting her nebs set up before doing her vest, because she likes squirting them into the cups. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It takes soooo much longer, I agree, but I try to let her do it because it's important!! She knows the order to do the nebs in while vesting and what 'minutes' on the vest to switch out each one (she always pauses both the vest and the neb when she has to cough so it's easy to keep track.) I made a chart and stuck it to the cabinet next to where the vest is, showing her AM and PM vest routines (and another for when she's sick) showing the order of her treatments (including a drawing of each vial & name for it), how long it takes for each one and the corresponding numbers that will show on the vest, etc. She referenced the chart for a long time and now she knows it cold. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Now that she had the new vest she can also get into and out of it on her own- the old black one she couldn't manage the buckles on her own. She hangs it up when she's done right next to the compressor and we leave the hoses all attached.
We have tried for a long time to get her to initiate doing the vest completely on her own but that has not worked out really well. We tried a while back with a sticker chart (which usually works well for her) and it didn't- it wasn't that she was UNcooperative- it just didn't work. I don't think she was ready. And then she ran into months and months of constant sickness where it seemed like all she was doing all day long was vest and nebs. Maybe we'll try for this again in a couple months with another chart and she'll be more ready. Right now, the feeding tube is brand new to her and she is interested in helping keep the site clean and in learning how to hook herself up to it, etc. So I am involving her in that whole thing.
We've definitely learned with her that the more involved she is, the more cooperative she is. And that we won't know what kids are truly capable of until we challenge them a bit! Some parents I know that have healthy, typical kids (Emily has developmental disabilities) are horrified that I let her handle rx medications. Well, she takes 10 rx meds, this number will only grow- she HAS to learn how to handle them responsibly. And she's proven she can do so! Obviously if all she did was throw them around or try to stuff handfuls in her mouth I would not let her! But she thrives when given responsibility she can handle.
