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~School Disscussion~ Come here to find support, advice, or share stories relating to going to school (all levels of education) and your EDS!

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EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 02-12-2010   #1
vampirefan
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High School and 504

Hi,

I live in a small school district so while I am in the 7th grade, it is part of the High school.

Anyway, my "notes" started last year when I was still in elementary school, and there wasn't a problem at ALL.

This year, before I started 7th, I had a few more notes from Dr. Keitz. I had one for Unlimited bathroom breaks (which I had before because I have IBS and other stuff) one for having extra time to do assignments (due to my hands), and one for self-limiting in Gym.

Within about a month, he also wanted to send a note to let me keep a set of books at home so that I wouldn't have to carry the big textbooks everywhere. Especially after I fell down the stairs.

This was like a big thing. My mom had to bug the school constantly until finally they decided on the 504...which took till November!

Then, of course, the 1/2 year classes ended a few weeks ago and I got a new health class, an Art class and a Computer class to replace what i had done the first two marking periods. Again, my mom had to call because one of my teachers said we got one bathroom break a week.

Does anyone else have to deal with this all the time??????

Its embarrassing. Not only do I not want to have special treatment, but it can never be easy, you know?
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Old 02-12-2010   #2
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I also now get extra time in exams, and a break if needed. I'm now in year 10 and we have been trying to get this sorted since year 7! It bugs me because when I tell a teacher about this, they have to get back to me so they can find out what EDS actually is. But I guess that's because it is uncommon.
Hang in there, and keep trying at it (:
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Old 02-12-2010   #3
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Thanks for understanding. My mom even had to get mad for anything to happen. I mean,how should it really be???
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Old 02-12-2010   #4
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Personally, i think that the teachers should have more understanding about things they don't know about, or even to look into it to help their students
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Old 02-13-2010   #5
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Actually, the teachers have been cool with it. My math teacher even told my mom he would be willing to give me less homework. Of course, my mom didn't like that idea. Its just the office that's the problem. My principal is, I don't know, very strange. And scary. Though I think he might be afraid of my mom now.

The special needs lady and the principal and the guidance counsellor are the ones who are supposed to take care of it. They don't until my mom gets really mad and yells at them and sends email. She even had to go to the superintendant (who is nice) Once the teachers know, none of them give me a problem, though some might forget at times.

Are your teachers the problem?
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Old 02-13-2010   #6
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Some of them are, but most of them are cool with it
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Old 02-13-2010   #7
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Hi there, I'm Johnna and I'm 20 years old. When I was in 11th grade my counselor suggested a 504. I truly wouldn't have graduated without it.

Most of my teachers were really good about it; all but one. She was very angry that I was allowed to turn in work late, but she really had no choice, haha. Use it, don't abuse it, it's a great tool!

Remember no one knows your body better than you!

-Johnna
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Old 02-13-2010   #8
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What is this 502?
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Old 02-14-2010   #9
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A 504 plan is a plan put in place by the federal government for disabled students.

With it I was able to:

-Use the elevator
-Have a set of textbooks for both school and home so I wouldn't hurt myself carrying them
-Be late to class by up to 5 minutes if I was having a hard time walking
-Turn in assignments as late as I needed as long as they got turned in
-Miss as many days of school as I needed without being held back
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Adrenal Insufficiency! =]
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Old 02-14-2010   #10
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Oh awesome
Never even heard of it before now, thank you
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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