The Daughter Chronicles

Tuesday, May 10, 2005

Mia's IFSP meeting, plus she gets a new OT!

Yesterday was Mia's Individualized Family Service Plan (IFSP) meeting, which she has every few months (it's supposed to be every three months, I think, but it varies). At these meetings as many of her therapists as are able show up to discuss her progress with her support coordinator from the Division of Developmental Disabilities (DDD), who coordinates (wow - fancy that!) her treatment and advocates on her behalf with any recalcitrant (read: pain in the ass) insurance types. Yesterday's meeting was actually well attended - all three of her therapists showed up, which doesn't always happen (therapists are in short supply, and often they simply don't have the free time when it's not their scheduled time with Mia). These meetings are nice, because it allows her therapists to show how she has met the goals they set at the last meeting, but they're also depressing, because they remind me once again how far she has to go.

Her physical therapist is happy that she can sit up almost by herself. He showed me today how he only has to put a little pressure on her left hip when she's pushing herself up from her right side. She initiates that a lot, too, and we're hoping it won't be too much longer until she can actually sit up on her own. (By too much longer, I mean by the end of the year. Baby steps are required with disabled kids.) He has also seen a lot of improvement both in her posture when she stands and in her ability to straighten up. She used to lean forward and push her butt back, because her center of gravity was lower. Recently he's been forcing her to stand taller, and she's been adjusting to that. When he makes her walk (as seen in this picture), she is taking some of the steps spontaneously, which is a nice thing. So she's making progress there.

Her speech therapist mentioned that she would like to see Mia increase her spoken words to 10 or more over the next six months, and her signs to 20-25. She seems to have lost some words over the last six months, which is frustrating, and her signing is sloppy, since she knows that we know what she means. Her speech is something both Krys and I have neglected, and we feel bad about it. We can understand her for the most part, and she can understand us, and as her physical skills are more lacking, we tend to focus on that. That doesn't mean we should ignore her cognitive development, but we don't focus on it as much, and we have to change. We still have not figured out her AugCom device, because it's complicated and takes a long time, which we don't have (yes, yes, excuses, excuses). Her support coordinator and speech therapist mentioned that Southwest Human Development has a tutorial, and they'll come to your house to give it. They said it could be done while her speech therapist is there, so that we can all learn together! I'm keen to get going on it, and I'll find out more about that tomorrow (when her speech therapist is here).

Mia's new occupational therapist showed up as well. She saw Mia for the first time last Friday, and yesterday she stayed after the meeting and worked the child some more. We haven't had an OT in a couple of months, so we're very happy to have one again. PTs, for those who don't know, work on gross motor skills, while OTs deal with fine motor skills. The new OT is right off the turnip truck in terms of experience - I think she said that Mia was one of her first patients. She's very nice and she was working well with the Demon Child, so I hope she works out. It's pretty important for Mia to have an OT, and we're glad this one showed up and that she could come twice a week, since that's what all her therapists recommend. When DDD called and asked if we still wanted twice a week for Mia, I simply chuckled and said yes instead of giving my standard answer - if we had the money, we would pay a therapist to live with us and work her 12 hours a day.

So that's nice. The meeting still depressed me, and I spent the rest of the day in a funk (it didn't help that I'm getting over the flu). People who haven't seen Mia in a long time marvel at how far she's come, but for someone who sees her every day, it's frustrating. She achieves little milestones, and then regresses a bit or doesn't make any more progress in that area. As her PT put it today, once she achieves something, we as care-givers think she has internalized it, but with her condition, it takes her a lot longer to internalize something than the rest of us. So even if she does something a few times, we can't stop reinforcing it. For the most part, Krys and I do reinforce stuff, but we're not perfect, and we forget to reinforce stuff as well, so she loses it. It's a pain.

I mentioned this over on my other blog, and I'll mention it here too. I'm looking for easy recipes that a moron like me can prepare in less than 30 minutes. They should have lots of protein, low carbs (my cholesterol is horrid), and be somewhat light (Arizona in the summertime - 120 degrees in the shade!). Now that Krys is back to work, I feel like I should pick up the slack in the cooking department. It's only fair. You can leave the recipes as a comment or E-mail me. Thanks.


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