Yesterday was Sadie's annual IFSP meeting. This stands for Individual Family Service Plan. It's basically where our service coordinator from the state (I don't know why they call her that, she's more like our service gatekeeper) comes to our house and meets with us as a family, and any therapists who can come, to talk about the services Sadie's receiving and if they're helping her meet her goals. Then we revisit the goals we wrote last year and discuss if we're still working on them, if they need to be revised, or if we should completely toss them and write new ones. If you've ever been to an IEP meeting at a school (either as a teacher or a parent) it's very similar, only the goals aren't school related, they're more developmentally related.
This was our first meeting with our new service coordinator. Since we moved across town, and they're assigned by where you live, we got a new service coordinator...which is sort of sad because I really like our old one. And it's not that anything is wrong with who we have now, she does a fine job. But I really liked Annie, who was our old one, and I miss her.
Usually, the meeting starts out with me signing a bunch of papers and the service coordinator giving me a bunch of booklets and printouts that I've gotten a million times about privacy and procedural safeguards, etc. Then we go through what Sadie's day looks like. Here's kind of what I told her:
Sadie's day starts before she even wakes up. She gets medicine through her tube while she's still sleeping sometime between 7:30-8:00. Then she gets a tube feeding while she's still sleeping sometime between 8:30-9:00. Sometimes she wakes up then, but she's usually awake by 9:00. If not, I usually go in there and wake her up before 9:30...no sense in sleeping the day away!!
Then we get up, get dressed, comb her hair, brush her teeth, and we're ready for the day. She gets to choose what shirt she wants to wear from 2 choices I give her. You can read more about how we do that here. We've been giving Sadie choices of jammies at bedtime and shirts in the morning, and even though we've only been doing this about a month, we can already see progress. We not only ask her to look at her choices, we ask her to smile at the one she wants, she can do this about half of the time. Sometimes she even tries to reach for one or the other!!
Our days are different throughout the week, but everyday we try to do her eye patching for a half hour (which usually means watching Sesame St) and the stander for 20-30 minutes, which we try to do when the therapist is here. We have at least one therapy a day, so using that time to put her in the stander is good. Plus, she's not real keen on the stander yet, it's still awkward and a lot of hard work, so you have to really sit with her and entertain her for that entire time she's in it...which I'd rather her do with the therapist!!
She also gets 5 meals by mouth throughout the day (after that initial tube feeding while she's still sleeping), and water through her tube along with those meals. We feed her about every 2 or 2.5 hours. After she eats at 6:00, we usually start our bed time routine. Sometimes between 6:30-7:00 she gets a bath, then she gets to choose which jammies she's going to wear. She definitely has favorites and will almost always choose either the Tinkerbell footies or the Ariel jammies, but if we offer her both of those at the same time, Ariel usually wins. She also likes the Hello Kitty jammies!
She eats her last meal at 8:00, then gets bedtime medicines around 8:20. Those take about 20 minutes to kick in, so during those 20 minutes we brush teeth and get her feeding pump (which just gives her water overnight) all primed and set up for the night. Then we lay her down, kiss her good night and usually don't see her again until the next morning when we start all over again!!
After we went over Sadie's routines, we talked about her goals. We changed her feeding goal to say that she'll be able to eat age appropriate food and drink from a straw. We've seen a lot of progress in her eating over the last year, and especially over the last few months! But we do want her to chew and graduate from purees. A lot of her goals were related to communication, which is good. And she has some about sitting independently and playing with toys goals as well. We also changed one of her vision goals to instead of just reaching for a toy (which she sort of does already) to actually choosing a toy and exploring it with her vision while she's holding it.
Overall, I think it was a good meeting and I think that Sadie has some very good, reachable goals for this year. Maybe once we get a copy of the officially written-up IFSP, I will write each goal on a big piece of paper and tape it to the wall in the playroom. It'll be a good reminder of what we're working toward!!