Teaching independance

One of those things as a parent is that your job is to work yourself out of a job. But what the looks like for different kids is different. As the school year has started for Jillian we have looked at what ways can we help her learn more independence skills. For here there are going to be things that need to be modified but it is asking the question of how she can best succeed not by worrying about what is "typical" but what is going to help her the most so here is some of the things we are working on:

-clothing: last week I went through Jilli's clothes and sorted out what fits and what doesn't (she helped with this project too). Then I organized everything into outfits. I got a small bin that fits under Lydia's bed and put all of the outfits in the bin and now when she gets up in the morning she picks out an outfit from the bin and puts it on by herself.

- shoes: Before she got leg braces she was putting her shoes and socks on by herself but leg braces make things harder however we have worked hard and she is now able to put on her shoes and leg braces by herself. Sometimes I need to make the leg braces tighter but she can get them on. We also found a pair of shoes from Carters that she can get on by herself with her braces on and now we are working on finding other shoes she can get on by herself and helping her learn with the shoes that she already has. There are going to be some shoes that we will still need to put on for her (there are a couple that can be tricky for me) but this is an area we are working to help her learn.

- bathroom: Jilli is not potty trained and not close to being potty trained. She can sometimes tell you after the fact that she pooped but often will tell us she pooped when her diaper is wet. This morning was a reminder that she still doesn't feel when things are coming because she was getting dressed and accidentally peed on the floor and she was so sad about it. However she wants to be more independent in this area so she has transitioned to mainly wearing "stand up" diapers. With reminders she is able to change a stand up diaper on her own.

-Meds: Jilli gets a lot of meds in a day and that means we use a lot of syringes. She has been working on learning how to match up syringe parts to put them back together and what size syringe we need for which med and then I draw the med up. She hands me the meds in the order she wants me to put them in.

-car seat: she knows how to undo the chest clip and we have talked about car seat safety (yes we are those crazy parents who has a 4yr old still rear facing) so the rule is that once we open her door she can undo her chest clip. We are also working on her to be able to get in the car by climbing in, it is one of her PT goals.

-School work: Jilli is able to write her name in a legible way by herself. After she gets dressed in the morning she heads down and goes to the table to start school time.

-Pulse ox: Jilli is still on overnight pulse ox and in the morning after I turn the pulse ox off she takes the sensor off of her foot. A couple of weeks ago we forgot to put the sensor on her before she fell asleep so she put it on herself.

-Pump: we are working on teaching her how to turn off the pump herself if it is erroring and I am busy (It likes to error while I am getting Lydia down for a nap) This is still a work in progress but it is something she is working on

I am so proud of all of her hard work. She is really growing up!