Ok, this might sound like a no-brainer, but today the school's PT called to remind me about our end of the year meeting to discuss summer. During the call, she mentioned wanting me to meet her at a playground that has a low jungle gym so that Bug could be taught how to use it. She said "she told me the only thing she doesn't play on at recess are the bars, because they hurt their hands. I told her that she needs to develop calluses on her hands, that everyone does, and we just need to practice them to get those." I must admit, I was shocked and didn't have a response. After we hung-up, I called the Geneticist and left a message to get a go ahead or a "heck no!". My daughters hands hurt her more than any other part of her body, I cannot understand how it is good for her to be hanging from them on Monkey Bars... Even the OT from our school doesn't do too many strengthening exercises with her right now because they get sore and tired so easily - so why we'd push her to do Monkey Bars is beyond me.

I think I'm going to say no regardless - but it would be great to have the Dr's backing me up on this. Since children do not have to do Monkey Bars, I don't see why we should take a risk and have her do them. She doesn't miss doing them, or wish she could. So I would rather focus on other things. However, this really makes me wonder what is going to happen when I ask for adaptive PE for next year. After all, the PT is the same person who typically recommends an adaptive PE program in our district. Unfortunately, we just don't have the resources that bigger areas have and so several of the specialists actually do multiple jobs. I really hate the idea of having to step on toes and request a Adaptive PE specialist be brought in from another area, but I think I might have to. I guess I'll know more after our appointment this week.

Seven more days of school - yippee! We are all looking forward to a change of pace for awhile, although Bug will be doing summer school 5 days a week for 3 hours. I'm hoping that goes well and gets her a little more practice on some of the things she learned this year. I also am hoping I can talk them into putting some programs on her iBook before summer for us to get started practicing before fall when she has real work to do. Crossing my fingers...

I cannot believe that it's been almost 2 months since I posted here. So much has changed, and yet so much has remained the same.

Bug is doing pretty well, her problems remain the same with no real solutions. We have missed almost no school since the weather became warm, a total 360 from winter time. We only have three weeks of school left and we're busy trying to catch-up on work that's been piling up during those tough days. We've made great progress these last couple of weeks and should finish no problem by the time grades are due.

As the year is about to end, I've spent a lot of time reflecting on the things that we did this year, trying to decide which modifications will work for next year, and what will need to be added. I realized that while our IEP does not come up to be renewed/rewritten until Dec '07 all of the goals are written to be completed as of the end of this school year. I have gone back and forth on whether to recall a meeting before school is out or not, but have yet to make a decision. I have a call out to the OT to pick her brain and depending on how that goes I will either push for the meeting now, or wait and push for it the first two weeks of school.

Things at the top of my list for next year are 1) a commitment on which assistive technology she will be using, and making sure it is decked out in any available programming to make schoolwork easier for her. Currently they still have her with an iBook, which is fine, but there is no way for her to do any of her work on it except free writing. Most of the day is worksheets and math, so the iBook isn't as helpful as it should be. 2) A new chair. She needs a chair that provides additional support for her body and correct posture. I am trying to research this right now so I can enter the meeting with ideas and suggestions. 3) Adaptive PE. Physical therapy once a month is not replacing PE for her, and this year she sat out of PE more than she was allowed to join in. At the beginning of the year she was not bothered by this, but as the year is ending more and more often she is sad and upset about it.

Due to the fact we live in a small town, our AEA does not have an Adaptive PE Specialist. Also, the person in charge of Adaptive Technology is our OT. While she is wonderful as a OT, and has been helpful with the technology, I would really like a specialist to come out and do an evaluation and make some recommendations since this will effect Bug most of her schooling career. These are things that I plan on talking to the OT about when she calls.

Also on the list is that she get instruction on using her AT equipment. If she continues with the iBook, I am going to insist that she be given typing time. I will not accept the "she is too young" argument anymore, I spent this year trying their way and now it's time to be more assertive in trying mine. Since she still misses most recesses, there is no reason she can't have typing time during one of those periods a couple of times a week.

Another thing that the ASK Resource center said we need to talk about is what kind of instruction will be provided should she continue to come home early most of the winter. They think that she should qualify for home instruction if this is the case. I don't know if she does or not, but I am going to ask. Regardless we need a plan in place for when she is missing a lot of school or coming home early. We have spent a lot of time at home this year doing school work that was meant to be done in class.

Finally, I am going to request that the OT do more strengthening work with Bug. This year they didn't want to wear her out since she was already so tired at school and limited how much work they did because of that. Next year I think I want to push that they do more strengthening in hopes that it will help build her endurance. If we have an appropriate plan in place for when she is coming home, this should be a risk worth taking. She is not gaining any endurance at this point and still is bringing work home, so why not at least try to build the endurance if that is the case?

I have so much more to share, but my son is ill and calling. I hope to share more later, and still plan to get to the accommodations that are currently in her class as well as share the pictures of how her ring splints are made. :)