In less than a month we'll be having Bug's yearly staffing. Usually by now I'm combing the internet searching for answers to problems we're having or trying to find new ideas of things to try that might be helpful for her. However, this time not only am I sitting back just killing time, but I actually did something wonderful yesterday. I spoke to Bug's occupational therapist from the school and asked her directly where we were at. I said "please tell me honestly how you feel, I will not be upset if you don't think we need serviced any longer." If you have ever dealt with "the system" before, you know how risky a statement like this can be!
I think I took her a bit by surprise. She replied to me that she could continue to work with Bug on the Dragon Naturally Speaking, but beyond that she didn't see a need for OT services. I agree with this, and see it as a good thing! I told her I was perfectly happy to continue the Dragon at home on our own (especially since we are luckily not at point where Bug needs it). So - she is going to check with the Physical Therapist and see where Bug is with her. If she still needs servicing, we'll continue the IEP. If she does not, then we'll put together a health plan that addresses her medical needs and then they will keep an eye on her in case anything crops up.
I suspect if I had just shown-up for the meeting that the servicing and IEP would have just continued. But I honestly don't want to waste resources we don't need. I see it as a good thing if Bug is at a point where we can move beyond the IEP - as long as we are still able to have her medical needs met. I love her school and feel comfortable at this point whichever way it goes.
So what does this mean? It means that Bug is doing well! Yes, we are still having bumps in the road, but overall this is the best school year that she has had to date. She is keeping up with her peers, not needing a bunch of snacks or breaks, and hasn't missed much school at all. I hope that continues all winter! LOL We are not due back at the GI until near the end of school, we don't see the geneticist this year, her ring splints are still fitting great - so no need to see the hospital OT, we haven't needed any phyical therapy at the hospital, her allergies and asthma are under control, and while she is still seeing a therapist to deal with the medical anxiety - she is making lots of progress. All wonderful news!
Of course, we're not "home free", but I am so thankful that we seem to have gotten to a point where things are under control. The accomodations at school (special chair, beanbag for resting, grips for writing and coloring) help, her tummy hasn't acted up even though we reduced her medications, and her energy levels are up. We are still struggling a little with how much lactose she can tolerate (she is trying lactaid at school for the first time today with some milk) but that's easy compared to what we have been through!
So - I see this staffing as a milestone. It is the first time I have seen my daughter thriving to the point where I don't feel I need to be researching and preparing for this meeting. I am SO thankful for that, and I have faith that her support team will help make the right choice as to what she needs now. :)
Thursday, November 13, 2008 | | 1 Comments
Tonight Bug was sitting playing a video game when she suddenly said "ouch - my thumb just popped out". To my amazement, she then tried to bite the joint. When asked why, she informed me that "this is what I usually do when this happens." Mind you - this is all new news to me!
Apparently the gnawing on her thumb wasn't working as she came and sat on my lap telling me how much it was hurting/bothering her. I tried to gently manipulate it, but gosh darn-it, I have no idea how to relocate a thumb! Where is the instruction manual for that? LOL Anyway, she took her thumb back, rubbed it a little, put it back in her mouth and said "got it!" So I guess she knows better than I how to handle the situation. It's a weird way of doing it, but if it works, I guess that's ok, right?
I was surprised by two things. First of all that this has been happening for awhile and that I had no idea! Secondly, that she knew how to deal with it and thought it wasn't a big deal. Painful, yes, but something to freak out about? No. To her, it's annoying, but "normal".