Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-23-2013, 08:19 PM #1
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Default the 504 program - help for kids in school with RSD

I posted this info on another board and several users found it very helpful, so I thought I would start a thread on it here, because it is something that has been very useful to me in managing my daughter's RSD.

With all the surgical procedures my daughter went through (spinal blocks and Bier blocks), she obviously missed a lot of school. Before the RSD, she was a straight-A student. After RSD hit, she missed a lot of school, and the missed homework assignments and tests just started piling up, which made the stress pile up, even though we tried to say it didn't matter and we would deal with it somehow. We had to get doctor notes and various other documentation whenever she would miss a day, and one awful day, she was pulled out of class (embarrassing!) and forced to walk all the way across a very large campus to the admin building (the worst possible thing for her - and she was in a surgery boot with crutches!) and made to sign a piece of paper saying that she knew that she was missing a lot of days. Thank you, Captain Obvious!

I vented my frustration to my neighbor, and she said "Why don't you get a 504 plan?"

To shorten a long post, a 504 plan is a federal statute that helps people with disabilities. In a school, what they generally do is set up a meeting with all of your teachers and some administrators in the same room (it usually takes several weeks to set this up) and you fill in the necessary paperwork that explains what she has and what she needs to cope with school better. You all sit down and discuss things, and then everyone signs a paper with what you agreed on. And then you don't need to keep getting doctor's notes; you have a permanent doctor note on file - all you do is call to the absence line when she's out.

In my daughter's case, we agreed that she could do things like leave class 5 minutes early so she wouldn't have to rush to get to her next class, elevate her foot or quietly get up and stand when needed, and that she could do homework until she got the concept (instead of having to do, say, all 50 assigned math problems, she could stop at 10 if she understood it by then). We also explained that for her, half-days were extremely helpful, and we would be doing a lot of them. We could get much more school in if we did half-days, instead of doing a whole day that bombed her out for 2 days after that.

I have teachers in my family, and they advised me that this is a very serious procedure and it means more work for the teachers, so we need to be sensitive to them, too - they actually have to sign a paper agreeing to do those things, as I mentioned. And also, I made sure to turn it around and ask the teachers how WE could help THEM deal with this. They said that me sending them emails helped quite a bit, because then they could plan better.

Anyway, it took a tremendous amount of stress off of us, it helped the teachers understand the severity of the problem, and it helped us all to help her at school. You can find out plenty of information via a Google search, then ask your school about it. Most should be happy to help you, but a small percentage might be defensive about it, so just be patient and persistent.

I'd love to hear if anyone here has had experience with this.
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Old 04-23-2013, 08:28 PM #2
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Default

Another option is full time online school.
It can be a good thing for kids having many kinds of school issues.

Most states have some online school choices and they fall under the local district school so no extra fees or costs.

I know of Connections Academy, and I'm sure there are many more now, when I was looking into online options it was 8 yrs ago or so.
http://www.connectionsacademy.com/home.aspx
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Old 04-23-2013, 09:27 PM #3
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Online school is definitely a very good option, too. My neighbor had a mixed experience with it - there was one teacher that was really a pain - but most teachers were good.
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