Archive for August, 2011

One of many

One of the many things I have been stressed with this summer is Max’s 504 plan. He has had a 504 through the elementary school since 3rd grade for access to the bathroom, water, and nurse, and breaks from tests if needed. In May I started talking to the learning facilitator (LF) about how it would work since he was moving to middle school. She blew me off for a while and told me not to worry about it and finally told me the week before the last week of school we would have our meeting the next Monday. I show up for the meeting and the only people who are present are the LF from the elementary school who is not the same one for the middle school and the elementary school vice principal. We start the meeting and the LF says she spoke to Max’s teacher and there were no issues this year so we can continue with the same plan for next year. I said I wanted to add for him to have “access to a controlled temperature environment” since he was moving from an air conditioned school to an unconditioned one, except for the library, nurses office, and main office. I want him to be able to say it is too hot for him and he needs to cool off in one of the air conditioned rooms. The VP immediately said that is not something they typically put on 504 plans. Now in my head I’m thinking I don’t really care what you “typically” put on a plan and really I only care what is on my son’s plan. And besides the fact that ARPKD really isn’t a typical disease! So I said that Max really cannot tolerate the heat. The VP then said that most kids cannot tolerate the heat. Huh??? I had to bite my tongue and I looked at her and said I wasn’t sure she understood the seriousness of Max’s medical condition. So we ended the meeting with the LF saying I needed to get a letter from the doctor. So I had the pediatrician write it on the medical which was not enough so the last day of school our nephrologist emailed in a letter. The LF again stated the VP was very against adding this to the 504 and also I needed to deal with the people at the district office. So on July 1st I emailed the person at the district office and the district nurse. On July 11th I called and she claimed she hadn’t read my email yet. She said she would look into it and get back to me but the district nurse might have to call the doctor, even though they had his note. I personally think that is a waste of everyone’s time but whatever. Also at that time I told her the LF from the elementary school had put the wrong dates on the 504. Scary, huh? A few days later in the mail I get both Max and Gabe’s 504’s with the corrected dates but Max’s has nothing about the “controlled temperature”. I left a message for the district person the next day. The next week a man from her office called me and said his supervisor had told him to call me to discuss everything. He said he would look into and get back to me. I finally called him the next week and he said he had nothing to do with it and I needed to call his supervisor (the person I had originally dealt with who then outsourced me to him). Huh??? Then I went out of town for a week and finally last week I left a message on Monday and then on Tuesday. Then I emailed an old friend of Matt’s who just happens to be the secretary to our superintendent. She said the district person said it was all set but if I had any more questions I could just ask the LF at the middle school when school started. NO WAY was I waiting for school to start. So I left another message and emailed with all of the above and all of the dates and how this had been going on for so long. She wrote me back that she has been very busy and does not like to make changes to a document she did not generate so she was referring it back to the LF who generated it. Um….hello….. that was at the elementary school and now he is going to the middle school. I finally got ahold of her this week on Monday. I told her that the LF who generated it said I needed to deal with her and that I wanted it finished before the first day of school. Then she told me how busy she was and I told her that was not my concern and my only concern was getting this 504 accomplished for my child who has a serious medical condition. Then she tried to give me the run around of when I would actually receive it. So finally I calmly said that I wanted all of the changes made and expected it to be in my hands by a week from tomorrow and if it wasn’t that I would be calling the superintendent. And guess what?? I received it the very next day. How ironic is that? And how very frustrating is that as well. Now can you imagine a parent who doesn’t speak English or maybe isn’t as educated as I am trying to fight this bureaucratic crap for  something that is pretty simple like typing up a document like that one.

And that is just one very small thing I have been dealing with this summer….. more to come soon!


August 18, 2011 at 10:06 pm Leave a comment

Monday Memories

our recent trip to Canada


In honor of not posting all summer long I am posting a recent picture of the boys! They are getting so big and have been keeping me quite busy this summer. I am hoping to get back into blogging. I have a lot to catch up on….Gabe’s appointments to a GI doctor, the urologist, and soon new endocrinologist. Max’s 504 issues. Nate’s emotional stuff. Me in general:) My two appointments with possible new nephrologists. But for now just a cute picture of them.

August 14, 2011 at 8:47 pm Leave a comment

August 2011
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