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Please Help With A 504 Plan For Hyper Pots, Eds For Middle School?

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Hello-- I was wondering if anyone might be able to help with samples/ideas to include in a 504 plan for my middle schooler-- 8th grade. She has been out of school since thanksgiving 2010 and is very anxious about her return. We are trying to make is as supportive as possible. Have a meeting with the Principal and head of guidance this coming Wednesday to set something up-- I am looking for ANY things that others have found helpful in cases of Hyper POTS, EDS hypermobility, and suspected ADHD. Thanks SO MUCH!! Dawn

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My daughter has just POTS so I don't have experience with her other issues and illnesses but I do know that the school district should have a special education coordinator to help you put a plan into place? If you go on the Dynakids website, they have some excellent information on educating the school and what to do with 504 plans. Check it out. It was very helpful for us and the school.

Let me know if you have any other questions. We've been through quite a bit with our daughter in the past 4 and a half years.


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My son had a 504 plan until we got him an IEP. His 504 plan had the following accommodations listed in it:

2 sets of books, one for home-one for school so he didn't have to carry them home and so they were already at home if he missed school

Can have a water bottle with him at all times

Can have extra restroom breaks as needed

Can go to the nurse without any questions being asked

Extra time on assignments when he missed school

Assignment modifications if necessary (he has hand tremors so it is easier for him to type the write)

No points taken off for penmanship (due to the tremors)

Fire drills were not to be spent outside standing in the sun(they would provide seating if they could and under a tree in shade)

I can't remember any more, but there might have been. Did you check the Dynakids.org website? I think they have something about 504 plans on it.

Also, all of his teachers were given a pamphlet/booklet that I printed out from dynakids so they were all aware of the condition.


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Christy, that is a good idea about not standing in the son. My son also has huge issues with temp control, even in the summer he has been freezing. What in the world are they going to do with him in the winter? Last year just going outside could send him into seizure like jerking!

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Let me contribute this then-- the things I have gathered-- Please note that we are brand new to this and I have NO IDEA if these will fly. Maybe they will help you. Let me know if you have any ideas!

I have this pamphlet to give them for all of the teachers


Here are the things we have been able to gather from online resources

as being helpful to address in accommodating POTS and EDS

Unlimited access to restroom

Place to rest/recover during the day if necessary-- nurses office? Library?

Unlimited access to drinking water during the day.

Extra time on testing

Extra time on homework/assignments

Modifications of assignments of she misses any extended periods of

time due to illness.

Additional Excused absences

Tardiness forgiveness.

Tutoring for catch up work (@ school & @ home)

Snacks if needed during day.

Modifications/Waiver of Physical education for units she feels are

too exhausting-- ie Track and field or in the case of her feeling

especially weak/fatigued.

Limited exposure to extremes in temperature-- heat, direct sunlight, cold.

Limit time standing in-line or standing up

Extra time to and from classes

Extra time to get to buss in afternoon.

Locker that is close to her homeroom

An extra set of textbooks that she can keep at home to avoid

carrying them home.

Increased teacher and guidance communication with parents to keep

her on track with class and home work.

Some ideas we've had ( some specific to her middle school) are--

* allowing her to keep her cell phone on her during the day for

emergency use only.

* Having some sort of "flash-pass" that she can show a teacher during

class in order to leave the classroom immediately without drawing

added attention to herself.

* She'll have to take medications twice during the school day at least.

* She should be exempt from physical behavioral consequences to the

class/group for individuals misbehavior. For instance on at least one

occasion last fall/winter Ms. Copenhaver made the entire class do

laps in the hallways and on the steps as a consequence for some errant

classmates behavior.

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My son had 2 lockers, our school is fairly large. One was in front of the building and the other in the back of the building. That way he didn't have to carry excess books around.

Since my son is in high school, for his PE credits they are allowing me to log his water jogging at home to count as his credit. Also, when we go to the Mayo in October for physical therapy, this will be counted towards his PE credits needed. He won't get a grade for the class, just credit.


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Christy, I am wondering how the 2 lockers would help. If it was ME I would probably always have what I needed in the other locker ;) But I am wondering if I can arrange to keep the text books in each classroom then he would not even have to carry them from room to room during the day, only his binder or a workbook.

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Sorry this is only off the top of my memory and I wasn't on it for very long before I got my GED. Another thing to note is that I was from a small town/school. (About 500 kids in my high school and my appt. was in walking distance or my mother would take time off to drive me home.)

A few things that my 504 plan included were:

  • Being able to put my feet up on the chair in front of me.
  • Being able to carry around any type of liquid with me wherever I went.
  • Only having to attend a few classes per day. (For example, I could start school with 3rd period, go home, and then come back for 5-7th period.)
  • They had an online program, I believe it was called Dynamic 2020, that I took a few classes on to make up for the ones I wasn't going to physically. (This program was very easy for me, you could go at your own pace and could do classes while laying in bed.)
  • Being able to carry my medicine with me. (Keeping it at the office, we didn't have a nurse's office, wasn't an option if I had an attack and couldn't get to it easily.)
  • Extra time on homework, projects, and tests if needed. (I just had to talk to my teacher and say I needed extra time.)

(We didn't have any extra lockers or books to spare, so I used a roller back pack or asked someone to carry it for me. I also already finished all my p.e. credits by then, so I didn't need to worry about that.)

I wish you luck in setting up a plan that works for your child.

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I feel terrible for any teenager with POTS. I was lucky in that I didnt develop it until I was 26.

The main thing Id suggest is that she be given time out - maybe a 10 minute break every hour or so.

In POTS quite often there is heightened sensitivity to adrenaline because the body is attempting to use it to reregulate blood flow (when there is alpha system disfunction or circulatory abnormalities, the bodies last defense is using adrenaline to try and activate b1 receptors). This may result in feelings of overstimulation and sensitivity to stress.

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Rama, thanks for that explaination. My son definately gets really bad adrenaline surges and then jerks. He also gets so hypersensitive to sound, I think even rustling papers much less all the talking, alarms, bells, smells, hot room, cold room, and so much more, it is all going to be a big challenge for him.

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