Wow - time is flying! Suddenly it is the middle of June - how did that happen???

Bug is now in her second week of summer school. She is loving every second of it! We tried skipping the mid-morning protein bars since they are only in class 3 hours and have a snack during that time, but it didn't work. So, back to protein bars it is.

It's really interesting seeing the amount of work she is bringing home, completed! What a difference the change in schedule makes. Most of summer school here is reading based - so there isn't a lot of written work at all. Because of this, Bug is able to complete more assignments when they do have them - which is wonderful! Just goes to show once again that she does enjoy doing the work and will do it on her own when she feels well.

We saw our allergist last week and he agreed that the rash around her mouth (see earlier blog posts) does look to be some kind of reaction to food. So now we're scheduled to do blood allergy tests for food in August. I hate to do that to Bug, but I've put it off as long as I can and I still can't figure out what is causing the problem. So - hopefully we'll get a couple of answers when the tests are done.

We were also able to get squeezed in with our hospital OT while we were there. He made us three new rings to replace some that have been lost the last month. He was amazed at how much her fingers have grown over the year - she will need an entire new set of rings this August. We could have gotten them now but decided it would be best to wait to see if she grows more since these are small but she still says they are comfortable. Since we had just been up to allergy I had gotten a copy of her growth chart and was able to tell the OT that she's grown a whole *3 inches* since he made those splints last August! WOW! So he was validated in his guess she'd grown a lot.

Summer is going well for us so far. Bug is loving the lazy afternoons after school, and we've been going to the pool a lot in the evening. One thing that is kind of sad is that her swimming has regressed so much after not doing it for several months. I am hoping after another week in the pool she'll get some of her strength back, but if not, I have the number of a new person to do private lessons with. Our old swim teacher is just too busy these days. :(

This weekend Bug had a "normal kid" schedule - she played all day Sat. in the sprinkler, and spent the night with a friend. Then she went to church early on Sunday and hung out over there for most of the afternoon. By the time I got her at 4:30, she was beat. So much so that she and her brother went up to play the computer and she fell asleep sitting at it, head down on the computer desk!!! I moved her to her bed, and she slept from 5:00 pm Sunday until 8:00 AM Monday. I had a really hard time getting her up too! However, we made it to school, just a few minutes late. I'd like to give her a more lazy day today, but we have vocal lessons this afternoon and then we plan to swim some. (I want her to swim at least a little each day) So, we'll see. It might be a busy day just with early bedtime.

One great thing about summer is that she is able to play and we can take the time to re coop! During the regular school year we just don't have the time to do that. If she plays like a "normal kid" then she is struggling all week in class. At the same time, it's so unfair to not let her play much - after all, she is a 6 year old! Maybe this summer I'll be able to figure out a better balance so that we can still do some fun stuff even during school.

I wanted to update that we are not doing any jungle gym stuff - I just don't think there is a good reason to. I think that the main concern the PT had was that we have these domes made from bars on the playground that Bug just won't even go near - and that is where most of the little girls hang out. This summer instead of teaching her jungle gym stuff I think I am going to try to get her comfortable on the school playground, and help her find activities there that she enjoys and are safe for her. I'd like to see her at least go under the dome, (no climbing required for that) but I could care less if she ever climbs it. I am also trying to do some research on getting a bench for the playground so that this year maybe she could sit outside during recess instead of inside. That way she gets fresh air and can socialize more. If anyone knows anything about park benches, or if there is somewhere that might donate one, let me know. :)

Finally (for now) I wanted to let you know that we got to bring the iBook home for the summer - and Bug has been playing it daily! When I say play, I mean playing the TYPING PROGRAM! She *loves* it, and has been practicing like crazy! I am so proud of her - every time she does that she is helping herself become just a little more independent! WOO-HOO!!!

I can't remember what I have posted here recently, so I'm going to go back and see if I've written my IEP stuff, summer goals, and the like. I also still want to get her accommodations posted, as well as the things we've modified at school and home, and the pictures/info from how her OT makes her rings. Hopefully summer will give me a chance to get caught-up on some of that.

Thanks for continuing to read and comment - you guys have given me some great ideas and strength over the last few months!

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. :)

Finally, warm weather!!! It's been a great week here, warm but not hot, and the kids are on break. Bug has done great so far, no tummy aches, lots of rest, and playtime with friends. Who could ask for more?

I saw her PT last week at the school, and asked for her thoughts about the fatigue and stomach aches at school. She was really pro-protein, and was thrilled we've already added two high protein snacks into her school day. She also suggested some supplements, which she has been taking for years, and I am awaiting more info on that when school starts back up. She seemed to be on the same page about the fatigue being the root of our problems (stomach included) but wasn't as enthused about my seating theory. However, I'm going to run that by the OT's since I think that might be more of their thing. But in the end, as we eliminate each of these potential causes, that gets us closer to more solutions. So if we keep trying what they suggest, and still have problems, I'm thinking that they will be more receptive to some of my more "off-beat" suggestions. ;)

After having a taste of Spring Break, I just can't wait for summer! It is so nice to see Bug getting lots of rest, having time to play, and enjoying herself. School just wears her out so much... It's amazing how much of a difference it makes just having the leisure of being able to stop and rest as needed instead of being on someone else's schedule.

I'm also looking forward to lots of lazy days at the pool. I just wish I had a laptop so I could actually get work done while she plays and swims. We spend so much time there I could accomplish a lot!

That's about it for today - like I said, it's so much less stressful when we are completely on our own schedule. Of course, we aren't doing any school work right now either, which gets tiring. Breaks are so nice...

Today was the warmest it's been in months - yipiee! 72 degrees, sunny, and clear. Bug told me she went out for two recesses today, as well as for a special reward time outside they had earned. She hasn't been out that much in a single day since fall. So, I asked her, why she went out so much today. She told me because she wanted to. So I asked why she doesn't go out when it's colder out. And she said "because when it's cold my body hurts more." So - note to myself to share that with our Dr's. It makes sense in many ways - and rings true of what I remember from last year. Of course, last year we were just beginning our journey and I wasn't keeping notes like this yet, but from what I can remember winter was really hard on her compared to the warmer months.

That's it for today!